|Doctor Notes and Plan||60 to 90 days - a stroke blog recovery site||
"What's the recovery time? Three weeks?"
He laughs, "60 to 90 days, my friend, then we'll talk."
The Shakey Milks latest CD is available at CDBaby. Click the link! Tell your friends!
Cast of Characters
Milks (Best band ever?)
Three tunes with new meaning:
Do you know what to means (to miss New Orleans)?
I Drink Beer
Brain / Heart Info
PFO (Patent Foramen Ovale)
TEE (transesophageal echocardiogram)
Coumadin (blood thinner)
January 12th 2010 - The end of the blog!
I gave you fair warning, stroke-heads, this blog is over. I can't write about being dizzy all the time. Frankly, the subject bores even me now. I already have a quasi-daily blog at 4.0 the new non-web. Check that out!
I also created a collection of songs which I am releasing as an album called Hold My Elbow. You can download the tunes at that link. The CD will be sent to those who think they are deserving. Send me an email if you want a CD.
I'm back at work, started yesterday. I head to the 835 Market office later today. My first day? Lots of phone calls. I joke with colleagues that I may just open up a flower shop. I'm not sure why I pick flower shop. Perhaps I could sell tulips by day and gig by night? I bet the pay is fantastic.
I'm going to stand right in the same spot at Microsoft office at 835 Market street, by the copy machine and the humming server room. I'm going to stand there and say: 'I survive.' I'll be a little nervous, stomach all tingling. But fate serves us as she serves us. Our reaction dictates who we are. I never liked 835 Market, but I go there when I have to. The boxing analogy goes like this:
Mr Crusher versus Mr Bad News
Round 1 - Mr Bad News
Round 2 - Mr Crusher
Round 3 - TBD
Stuff I have learned:
- If you're going to have a stroke, have one in August. It's not a bad stroke month. I didn't ruin any holidays and appeared only slightly stoned at my 40th birthday (September).
- There is no money in blogging. Don't let these web sites fool you. You have to do this only if you love it. That's why I'm getting out of this business while I can. A career in Jazz piano looks lucrative by comparison.
- Crosswords can help calm you down. If you can do a crossword - GOOD NEWS! - you are probably not having a stroke. If you can't do a crossword, it might be Friday and those Friday crosswords are killer - so don't panic! You're probably not having a stroke. If it's Monday and you're struggling, take two aspirin and call 911. I don't know why I find crosswords so satisfying and I can't believe I have never done crosswords before in my life. It's also fun because Mon and I can do this together. It's also amazing how bad I am at crosswords.
- It takes a village to have a stroke. All my friends who reached out to me, took care of the kids, made us meals, sent cards, dropped by, talked, didn't talk. Everyone who visited me and Mon, called, sent cards, listened to me, smiled at me when I walked towards them - slowly... slowly... slowly... here he comes! - everyone who laughed when I joked about it, or met me and talked about everything except the stroke (what a relief!). Time with you has healed me.
- Monique. You often hear couples talk of how their love has been 'tested' or 'proven.' Unfortunately, this usually involves some terrible thing, like separation. But Mon and I didn't have to go through that. The stroke happened to both of us, and Mon saved me. I never want to help her through something like this, but if it happens, I hope I can show up like she did.
- The boys. Kids will save your life if you let them. More than anyone, the boys taught me that life is worth living. Pain and old age are just part of growing younger. Youth is not wasted on the young - that's what unhappy old people say. Youth is wasted. Period. That's the way it should be. Only children can teach you how to be children.
My name is Simon Donovan. I had a stroke on August 11th, 2009. I am the luckiest man alive.
January 3rd, 4th, 5th and 6th 2010
At first, I left the January 2nd post to ensure people would listen to my music. Then I just got lazy. But fear not stroke-heads! This blog is ending. We're counting down the days until 'end of the 60-to-90 blog that actually is 120 days.'
Sunday is Dec's birthday bash at 1622. The Gibbons family shows up in full force, including Teddy, our littlest cousin. It's great to be with family in our house and the boys are pretty proud of their 'new digs' with desks and a fish bowl and everything.
Monday AM I walk Dec to school again. It feels like years since I've done this. I'm going to walk Dec to school every Monday morning, so this tradition will continue. I take a long nap Monday, which worries me. I also get my blood drawn by a 13-year-old, which is interesting.
Today we leave Dec off at school and he has to walk by himself up the ramp to watch kick-ball. I tell Mon: 'This is almost as bad as the first day...' but he makes it fine. He waves, blows us some kisses and heads out. We see him later and he has a huge bruise and goose egg on his forehead. 'What's this?' says Mon. 'Nothing. Fell. Against the bench down there.'
I spend this morning with Dash at Miraloma, but Dash barely acknowledges me. But when it comes time for 'circle time' he's all a bout Dads. Dash and I head to the playground down the street for a little break. He meets some friends there and even makes friends with a new one. The older boy says: 'How old are you, Dash?' He replies: 'My brother is six.'
We play football, soccer and baseball in the backyard. Dash hits well and Declan launches the Red Sox ball ON TOP of Martha's roof! Gabriel, Martha's son, is in his backyard while we're playing. Dash yells over the fence: 'Hey Baby Bel! Do you have a tall ladder? Can you help get our ball down off your roof?' Gabriel says: 'Ummm.' Dec says: 'Maybe the next time someone fixes your roof they'll find it up there and they can throw it over.' Gabriel says: 'Ummm. Sure guys...' They are big SF Giants fans next door. I always tell them that Dec and Dash are my two left-handed 401-K investment strategies! I pitched Dec low and outside but he extended the bat and nailed that one.
It's been a bit rough around the edges with Dec. Am I tired? Is he a pain? Am I worried about work? My priorities for work are:
- Take myself even less seriously than I did before. I'm not sure this is possible. But I'm going to try really hard.
- Never bring the tension home. I was pretty good about this, but I think I'll need more transition time (piano perhaps?) between work and 'life upstairs.'
- Spend less time on stuff that bothers me. No one notices anyway.
- Work 8 hours and then put it away. I really like what I do, but I might try to work less. I'll 'do less with more' as they say.
January 2nd 2010
Today I cut and stack cardboard boxes in the garage. We head to Noe Valley for Dash to buy a present for Dec. He convinces me to buy him a special present as well because life is short and Transformers are actually pretty cool.
My crossword addition is out-of-hand, but perfect for long lines at Safeway. I record two songs tonight. This is a sneak peek at the up-coming cover album. Note that this is not the up-coming stroke album, but another list of covers I'm working on.
All live, no over-dubs and no mixing. Recorded from my portable mic in the dining room. Listen closely and you can hear Mon's knitting needles.
You can also hear Dashi singing Speed Racer and me saying 'clothes in hamper' twenty times and Dec whining about taking a shower first. I finally bribe Dec with 'bubble burster' - a game he plays on my phone. No shame over here in Donovanland!
December 29th, 30th, 31st and January 1st 2010
I left the 28th post for a long time, so people could read about the remote control airplane incident. That is perhaps the funniest thing to happen to me in a long time. Fear not, strokeheads, this blog is ending, and soon. But not just yet...
Ikea has owned my ass for the past few days. That store is amazing, and while they didn't directly sponsor this blog, they did provide me with some pretty juicy sales items. For that, they get a big 60-to-90 thumbs up! We buy:
- 2 desks for the boys - with chairs they pick out. Dashi later claims his chair is 'very umformtable' but I think he's just jealous of Declan's red brigade of desk material.
- 2 wire file cabinets for the boys. These are great for storing toys.
- 3 bookcases for Mon. 1 for yarn, 2 for cookbooks.
- 1 shelf for the boys' big trucks
I get through Ikea no problem. While I wait for the boys and Mon at lunch, the spins get me a bit. So I unfold my trusty crossword and get to work. Crosswords are better than Xanax! (Although I've never actually tried Xanax).
The next two days for me are a blur of waking up super-late and constructing this Ikea stuff. Dec helps; Dash plays. I love the focus of the construction, but lose tools all the time. The second day, I develop a system of putting the tools in the same place - no matter where I am. This sometimes leads to me walking across the house just to put the hammer down, but it does greatly decrease tool loss. My friend Adam laughs when I tell him how 'hard this work is.'
Cortney, Adam, Mon and I head out to see the Heavenly States and X. If I can stand the crowd and Slim's then I can do anything. Truthfully, the floor moves all night. It gets to a point where I simply ignore it. I trip over some people on my way to the men's room. They wave to me. These old punk rockers are so... nice? That's not how it was in the 80's at TT the Bear's place, I can assure you. At dinner, Cortney shows me the artwork for the up-coming MLR album and it gets me all thrilled again. Stroke-heads, this is not just a blog that changes your life. It's a blog, with a sing-along album that will also change your life. You are in for TWO life-changing events.
New Year's we're with the coolest friends ever. Deb and Al host the dinner with Adam, Cortney, Chris and Sara (and us). All kids are in full force, but they pretty much play amongst themselves. We talk, eat dinner. It reminds me of my parent's parties long ago. I once charged people two dollars to get their coats from my bedroom (where they were deposited as guests arrived earlier in the evening). One of Dad's friends couldn't stop laughing: 'This little one! He gets it! He's charging us to get our coats back!'
The New Year brings a fear conquest, and Georgio's pizza, so we're staring things off right. We buy Dec an early birthday present: fish, fish tank and sundry add-ons. It's pretty fun setting the thing up, and Dec chooses the fish and names them right away. The fish are:
- Bridge. The orange one, named for the day we crossed the Golden Gate Bridge.
- Don't catch me. A freaky looking one - all white with what looks like an orange fish baseball cap on.
- Choo Choo. Charcoal - like steam from the engine - and sneaky.
As we all look at the fish in their new home, I'm reminded of how we can see others and know where they are headed (or how they're trapped) but how they themselves are completely oblivious. I remember reading about a woman who had a religious epiphany while watching ants crawl on her leg. She realized that as these ants could be on her, indeed, almost a part of her, they could be completely oblivious to what she saw - and even the fact that she existed.
Is my fear of heights, my lingering stroke symptoms, all that - is that my fishbowl?
When it's not good, but we're not sure if it's bad, it's coffee. That Wall Street Journal article on coffee is a microcosm of what I've gone through. I'm a firm believer in science. I believe, most of the time, it's all we've got. But science will not save you. Science simply points the direction. It's up to you to decide. Reading that article I thought: 'This is exactly how I feel. Maybe I'm super-healthy with this incredibly random thing that happened to me. Maybe I have a congenital defect and without Coumadin I'd be 'stroking' all the time. Maybe it's just the PFO. Maybe... Maybe I should drink 6 cups of coffee and worry about my prostate more.'
The good news is that I can skate. No. Problem. At. All. When we first arrive at the rink at Union Square, I skate around by myself a couple laps. I'm doing so well, I smugly think: 'I hope Mon has the video out for this turn...' at which point I fall flat on my a.. and twist my knee! I look up - nope - she's saying hello to the Andersen crew. Lucky me.
We then head to Aptos to fly Dec's remote control plane he got from uncle Ed. I say: 'Let me try this thing out a couple times to get the feel for it.' I launch the plane up, up, up! It must be 200 feet above us - at least - and the wind drives it over the park fence into traffic. Dec and Dash are dumbfounded. I'm hauling on that remote control like it's a fishing reel, yelling: 'Com'on baby! Come ON!' It lands on the edge of the park. Dec has to climb under the park fence through some kind of gopher hole (an action which I sanction) and come back with the plane. Dash insists on following him, and then gets stuck in the fence. This is D minus parenting at it's most eventful. But it gets worse! I say: 'Let me try that thing one more time...' This time, the plane ascends to 300 feet at least. It is waaaaaaay up there. I have no control whatsoever on this thing. It's looping and looping. But worse than the last time, it now floats above the street with heavy traffic and MUNI trains. Dec looks at me with that kid expression: 'I thought you were invincible. Now you have proven to me you are not only fallible, but a bit of a jack-ass as well.' I'm shouting at the plane: 'No! No! No!' but it falls, falls... spinning down. It dips below the hill, so I cannot see it. Dec runs to the edge of the park. 'Ahhhhhh!' he cries. I'm expecting to hear the screech of car tires as cars avoid this tiny red UFO loop-deee-looping through the streets. Instead, Dec stops, looks, looks back at me. Finally he says:
-- 'It's trapped in a house!' he shouts across the park to me.
-- 'In a house?' I shout, 'On a roof?'
-- 'No. Not on a roof. In a... yard. Maybe.'
He does a great job of explaining to me where the plane has landed. It's on the other side of the street, in someone's postage-stamp front yard. I tell Dec: 'Go swing Dashi on the tire swing and do not leave this park!' I run across the street - avoiding MUNI cars and traffic (I told you the parenting got worse) until I get to the house. I knock on the gate (can't see over it, so I don't know if the plane is there). No answer. I look around, discreetly trying the gate latch. My Sherlock Holmesiness discovers that the gate is unlocked. I slip in, see the red plane behind a flower pot, snatch it, and run out. I run back; both boys are safe. I say: 'I'm not sure we should fly this thing today. Too much wind.' Dec says: 'Com'on Dad, give me one try....'
Dec flies the plane flawlessly for the rest of the day. He doesn't even need instruction from me and generally ignores my direction. Except for starting on the pitcher's mound each take-off (my idea) he's on his own. He figures out that you need to cut the engine so the plane can drift down. Otherwise, the plane rises to stratospheric heights.
I'm humbled. But I wasn't that high up to begin with. I will never forget the looks on the boys faces as that plane climbed higher and higher. I swear, that thing was 400 feet in the air. We must have made quite a spectacle, the three of us. Me, pulling at the remote and shouting: 'Com'on baby. Come ON!' while Dec and Dash sand, mouths agape, looking upward at this little red plane growing smaller and smaller.
Nothing cures existential anxiety better than a day with Legos. I think Pascal wrote: 'Give a sad man a ball to throw and he'll be happy in an hour.' It's something like that (too late to find the quote on the inter-web). We hit Lego town in Palo Alto and we hit it hard. Great pics and even a video. They're running a sale on sandwich bags full of Legos and of course I indulge - it's a deal ($1 per bag). An easy day, but oddly enough, it's the Lobster shack that gives me the shakes. My family has Lobster on Christmas night so Mon thought it best to try this place near the Lego exhibit. It's a great place - the roll is hugely expensive and delicious. I feel decadent, eating that Maine Lobster roll in sunny Palo Alto. But the place gives me the spins - maybe it's the noise, or the Lobster. I dated a girl from Auburn, ME a long time ago. Maybe it's that? The key is, I power through it. And that will be my theme for many days to come.
Many of you have asked how my crosswords are coming along. Keep in mind that I have started crosswords, but that doesn't mean I'm any good at them. I couldn't finish them if Mon weren't around. Den spoke to me about his strategy on crosswords the other day - there's no way I'm in Denny or Monica's league. But oddly enough, I feel happiest when cross wording. This worries me a little, as I hardly have time for music and reading as it is. But crosswords help immensely. My neuro guy said they would, and he's right. Our brains are problem-solvers, that's why we have them. Give a sad man a cross word and he'll be happy in an hour (provided he gets 37-across.
I also have my first 'why me' moment. It's more a 'why-not-him' moment than a 'why me' moment, but they amount to the same thing. This guy crosses the street in front of our car. This is San Francisco, where pedestrians actually believe your car will splinter into 1000's of little peace signs and cascade across their universe if you hit them - doing them no harm whatsoever. So pedestrians and bikers own the roads. So this guy saunters across the crosswalk in front of us, cigarette dangling from his lips, belly hanging over the edge of this belt. I mean him no harm or ill will and I would never wish anything like Mr Crusher on anyone. But the thought did occur to me. Why me? Why not him? If the stroke doesn't change me then what was its purpose?
If you haven't read my sister Lea's blog, check it out. You can also check out my spoof of her family photo. She has a great post about how the holidays get her down, not because she doesn't like the holidays (and if you don't like double negatives, read Steven Pinker) but because she loves the holidays too much. She doesn't want them to end - and the holidays remind us of two things: first, that they end, and second, that our lives end.
This is why I push through dizziness or ignore my fatigue. I've always been a bit of a fatalist, but now I'm even more so. We all should be.
I love the holidays too much. I love life too much!
December 24th and 25th
This marks the fist time 4.0, the new non-web site has been updated, while I skipped a day on the 60-90 site. When you're self-absorbed like me, stuff like that really counts.
We build trains at the Randall Museum. I roll this up and smoke it! I make the coolest TGV ever. All other kids trains are lame! I rule Christmas! Truthfully, I get a little over-involved in my train-making. Good times are had by all. We then head to pizza with the Fab 4 minus the Burduli (who are skating). At one point, I take all the boys outside because they're too crazy. First one gets hurt, then another (neither one ours) and they run back into the restaurant. I think: 'My friends must think I am the WORST FATHER EVER.' Let me watch your kids, and by 'watch your kids' I mean 'watch your kids... die!' Not my best showing, but no one is seriously hurt.
We head to grandma's, a tradition. I love the fact that we can walk a couple city blocks to our Christmas dinner. That's cool. I'm hit with some serious fatigue at grandma's. Not sure if this is holiday sloth or Coumadin laziness, or a combo-platter, but I'm racked. Papa notices. 'You tired?' he asks. It's touching, and worrisome that he notices. No matter how much I gripe and complain here in blog-land, I would never want to appear gloomy, not in person. I don't lie, but I bust through diner as best I can. While Mon and her folks are at Mass, I wrap presents. The boys have quite a haul. I check on Dec after putting them down and his head pops above the bunk railing (Dash is snoring LOUDLY). 'Dad?!?' he says. 'Did you think it was Santa?' I ask. 'No,' he laughs, 'I thought it was Nana...' Nana and Papa stay over Christmas night, which is hugely special.
The stage is set.
Boys are wheels up at 5:55AM. Mon shoos them away from the front room and amazingly, they comply. But not for long. The whole morning I'm spinning (literally and figuratively) with Lego directions ('constructions' as Declan calls them) race tracks and unpacking presents. Everything is so tightly tied in kids toys today; I guess it's a long, rough boat ride from China. I love the focus of Legos. If didn't love crosswords so much, I'd probably seriously take up lego-ing. With Dec's new obsession, I probably will.
Dash says: 'Daddy this is the best Christmas ever? Even better than the first one.' It's the ultimate pagan day.
We cannot control what fortune brings us, but we alone rule our reaction.
Dan and Wellington come over in the morning and we talk. These guys seem bigger and bigger to me. Am I getting skinnier? We play football in the backyard and W says to me: 'Jesus you're kids are tough.' Dec and Dash definitely throw down in backyard football. Nothing to mess with. Dashi loves having W and Dan as 'blockers' on his team. They over-power me and Dec. Sometimes, I can't believe all the crazy stuff we did in Paris years ago. I look at Dan (a doctor now) and W (a filmmaker) and think: 'Was that us?' Too many stories there...
I should still probably take a nap during the day, but I don't. I'm now wondering if Coumadin makes me tired and a bit 'out of it.' In all, this isn't bad news. I'm more impatient to get the PFO fixed and get off Coumadin than I was before.
We head to the Japanese Tea Garden in Golden Gate Park. Declan saw this last night in a kids book we have called This is San Francisco. He says: 'I want to go to these Japan Gardens.' We love having the kids lead us, so this is top of our list. In all, these gardens are pretty tame. Bonsai's cool, but for 5 bucks I can get a killer latte and a biscuit. the SF Japan Gardens are well-paved and not much else. But we love the bridge.
Tonight, we eat at Fog City Diner. After I asked Mon to marry me (11 years ago!) we went here. I try to cop a free glass of champagne, which we usually do successfully, but this waitress is not falling for it. Like it or not, I find most women, when working, to be very un-romantic.
We ride around, looking at Christmas lights. We call them 'Bonanzas' in this family.
Taking with Chris of Microsoft about one of our customers today, I feel this thing has aged me. Maybe I'm 10 years older. Maybe I need to sleep more. In any case, I can listen to him fine; we talk numbers. He's a very intense guy, so if I can hang with him I can hang with anyone. I walk past the place where the stroke hit me. 'It's over there,' I say, and keep walking.
The boys hang at the house with their friends Nate and Matthew. The boys play office, which is cool. I'm working with an HR guy from Microsoft who's name is Steve Couch. Dec and Dash think this is the funniest thing. They sit on the couch, in front of one of the computer keyboards I setup for them, and say: 'Dad? Did you get that email from STEVE COUCH?' They bust up laughing. They don't know that Mr Couch decides how much I get paid while on STD. Crack one more Mr Couch joke, boys, and maybe the other Mr C might not carry such a heavy load this year
I shop for Mon today at a store I went to long ago - right after the stroke. It amazes me what I can do, and what still bothers me. I eat at the mall with Mon and the boys. We see Santa. He looks tired: 'It'll get crowded later,' he says. Tell me about it, I think, tell me about it...
December 20th and 21st
There are still those days, usually in the shower for reasons unknown, where I think: 'Wow. I have had a stroke. My chances of having another are much greater than anyone else I know. How am I ever going to function normally?' I can either push these thoughts away or 'deal' with them. Nietzsche says: 'And if you gaze for long into an abyss, the abyss gazes also into you.' Little comfort there, but FN was not a big 'comfort man' now was he?
On Sunday, I get a visit from an old friend, Rich. He and his family drop by, unexpected but welcomed. I admit, I am a bit anxious before the visit, thinking: 'I should call him and tell him I'm busy.' But I hold off and I'm glad for it. We talk a little about the old times at Extreme Logic and about business. The boys climb all over me while the guests are here. Rich's daughter Rachel says: 'Rich always wanted boys. He's so jealous of you right now!' Rich is a great guest. He doesn't grill me on 'What happened? How did you feel? What was your recovery like?' Blah blah blah. We just talk about the here and now. I do worry a little about my return to work, as telling (and re-telling) 'the big story' is taxing. Do people really want to hear the details?
Dec says: 'My Mom is a great chef. She really knows how to cook well. We're lucky.'
Monday's crossword is tough - even for Mon. This is vexing, as Monday is supposed to be my big confidence builder. I'm doing so poorly with the crossword at one point, I think: 'Am I having a stroke right here?' Al, Deb, Jack and Sophie come over for a visit and the house is mayhem. Little things like this are great for me because they show me that I HAVE improved. I remember a while back when we had a bunch of kids over and I had to retreat to the office. But today, I'm fine.
Dec, Dash and I head downstairs (lots of rain these days) to do some construction in the garage. We end up building a bridge, what Dec calls 'The Red Pacific.' Check out 4.0 the new non-web for details.
December 17th, 18th, 19th
When will this blogging end? I have an idea, but I'm not going to share right now. It's a surprise. Someday, this blog will actually end (and I'll probably start another one) but there are a couple dates out there I'm thinking through. Rest assured, tired stroke-heads, the end (of this blog, at least) is approaching.
As I tap this, Dash sits on my left arm, so typos are
Thursday Jack and Dash play together in the morning. They are two great buddies. You just wind them up and watch them go. Today is a big day for me. I meet with my friends from Microsoft: Ted, Annette and Chris at the Silicon Valley Campus. It's wild being back there. We talk more about life, personal stuff, kids, etc. But we do talk business. They ask all the questions: 'What was it like? What happened?' Etc. I haven't shared this blog with folks at work, not sure why. My position is not to bother people too much. But I might send out the link to Microsoft friends eventually. It is nice having the blog. Some people really want to know all the details - as if they don't realize that talking through every single second of my stroke might make me feel a little anxious. Still, these are great folks. We laugh about some of our customers and our up-coming H2 (second half of the year). Business-wise, I'm way behind.
Friday I head to Toys R Us because one of our Amazon packages ended up at our old house in San Francisco and the people there took two of our gifts. I then head to see Al, who's in the hospital after a heart procedure! Unbelievable. Al told me once: 'Next year, I want NOTHING to happen for you and me!' I'll be brutally honest here: It's nice being in a hospital and NOT being a patient. Al and I talk through his procedure, which is similar to my PFO fix. We talk about Sonos, work, etc. He introduces me to one of the nurses as 'my brother.' He does this so she won't cause issues with me being there, which is smart. But then she starts asking questions about 'our family.' We struggle to answer questions, which cracks us up. I do fine in the room and the hospital. It brings back that strange hospital feeling - dread and hope all wrapped up. Al's surgeon comes in with great news - his procedure went great. My first impression is: 'My god this kid is young!' As time goes by, I'll probably think that more and more often.
Saturday we skip swimming. This is huge for us, and we lounge all morning, building a combo Thomas - HO train set complete with a Lego town. It's good for all of us. We have lunch with Adam, Nate and Matthew and then head to a dog park / playground for some kick ball. This is a huge mistake. My advice to you is: no matter what your heart condition, never, under any circumstances take your kids to play anywhere near a dog park. And why do people own dogs? And why do they take them to dog parks? This place is filthy. You can smell it two blocks away. The ground - even the ground not piled high with dog sh.t - is a kind of muddy, crap-smelling goop. We end up playing basketball and climbing trees. Adam offers Mon his credit card to go Christmas shopping for Cortney (his wife). I think this is a brilliant idea; Mon demurs.
We re-name the dog part: 'Sh.tty Hill Park' and head home.
Saturday night, Adam, Al and I watch football. This is a huge night for me. Last time I was at Al's with the guys, I felt a little anxious. Tonight, no issues. I enjoy gingerbread cookies and chat through Coumadin issues with Al, now my 'Coumadin brother.'
Nothing major to report today, stroke-heads. The right side of my face is numb all day, but this has happened before. No need to be alarmed. Dec forgets to kiss me good-bye at the door to his classroom. I'm floored and more than a little disappointed. But as I turn, I hear: 'Hey Dad!' and he runs out and gives me a hug and kiss.
I talk to my new boss at work, chatting about what Microsoft calls the Rhythm of the Business (ROB). This is a nice term for all the stuff you have to do to make sure everyone knows what you're doing. He's a great guy who, as chance would have it, had a pretty serious head injury only a year ago. Amazingly, he has a firm grasp on how crowds and stimulation generally reek havoc on the sensitive, post-stroke mind. No joke, I appreciate it. The point is that I handle the call. There's a lot 'to fix' in the second half of the year, but I feel up to the task, if somewhat unclear on how exactly I'm going to be successful.
Mon and I are full-on, crossword puzzle do-ers. I remember her doing them and having no interest whatsoever. Now, I'm the main contributor. I seem to get the longer words more easily. I struggle with things like four letter word for 'organ pipe part.' How could I not get STOP? Anyway, it's great. I am (again) intimidated by my wife's intelligence.
But I'd rather be intimidated by a smart wife than bored by a dumb one.
Managing the insurance part of this ordeal is a part-time job. It'll be exciting to be back at work where I can at least pretend not to worry about who's paying for what. But I do finish the Charfunkles 09 first mix. There is still some work to do on these songs, but they're close. I'll cut and send CDs tomorrow.
We eat at Pasta Pamador's tonight. This place is, hands-down, the boys favorite. We see some friends there and run around Noe Valley, looking at Christmas lights. Dec loses another tooth today. He says: 'It may have fallen out. I may have pulled it.' Like me, he can't wait for things to happen.
December 13th and 14th
Scoot on over to the all-new 4.0 non-web blog. There's a new post on brothers and the mall!
Sunday, I sleep in. Those 1.7 beers I drank Saturday really hit me. I have a headache all day - even my morning walk doesn't shake it. Most people have a headache and think: 'Ah. I have a headache, I'll take an aspirin.' I have a headache and think: 'AHHHHhhhhhhh!!! Brain hemmorrhaging!' But I know it's not a stroke, I mean, I can do a crossword puzzle so I'm fine. Charles and I lay down tracks for the up-coming Charfunkles release. Declan joins in for two recordings, so this year's CD is shaping up nicely. If you're not on the Charfunkles' mailing list, send me an email. Dec says: 'Is uncle Charley staying for a sleep-over?' Charles is really touched by this, as am I. It's great having him here all day. I do not think Dec would have recorded music without Charles here. I said: 'Do you want me to play piano on this one?' 'No,' he says, 'Can uncle Charley play guitar with me?'
Monday, I walk to school with Dec. He says: 'Hey Dad. What's the school I'll go to after Jefferson?' I say: 'There's middle school, then high school, then college.' He says - completely unprovoked - 'That's right. I want to go to Boston College!' I really wish Grampy could have heard that one. Although after some questions, I think Dec wants to go to BC to play football. I bet he'll be embarrassed to learn his old man played in the marching band! Today I head to a new doctor's office to drop off my MRI DVDs. People give me strange looks, but all goes well. I return our coffee maker (which has broken 3 times) to the mall. Wow. The mall. I remember walking in the Stonestown Galleria just a few days after my stroke. Mon left me alone for a couple minutes on the bottom floor. I walk around there now, amazed that I can simply walk along - and look at stuff. Look at all this stuff! It's ridiculous. Anyway, in Brookstone, I have a little 'episode.' It's a pretty minor one. Sometimes, it feels like the floor is tilted one way or the other. It feels like there's a ramp, sometimes up, sometimes down. It's a bit freaky, but I muscle through. My trusty crossword puzzle comes in handy and I take a break on one of the benches.
It's a bit like a workday because I don't see the boys until late afternoon. We watch the 49ers - both boys on my lap until Dec says he loves his moms and sits with her. I don't suppose it'll ever feel like I've never had the stroke. But some days get close.
I sleep in and take a long nap today. Is this week-end rainy laziness or something else? I'll go with the former. We work in the garage today to keep warm. The boys repair their wooden boats, which are left-over 2-by-fours from when Den made the tree fort. I give Dash the glue bottle 'You know how to use this?' 'Oh yeah! Of course Dad!' He runs downstairs. They work diligently, and end up gluing one of the boats to the floor downstairs. They use an entire bottle of glue. I'm lucky they're not stuck to the floor. This is what happens when Mon leaves us alone.
We head to swimming, and we even look for the hot dog stand afterward, but those folks are long gone. It's pouring out, and windy too. We also do some serious puddle jumping.
And tonight it's the Fab Four! Chris and Sara, Cortney and Adam, Al and Deb, all head to dinner. We talk through all the parent subjects, and some subjects that might not be so parent-y. We give Al a Pat Metheny poster and one from the Tour de France 96. He seems very touched. Adam engineered the whole gift thing, so it's great all around. Sara says: 'Wow. Men ARE capable of listening. Ladies, why can't we get them to listen to us?' I say: 'Well, if you ladies talked about interesting stuff, we'd listen...'
All those terms like 'it takes a village' or 'you can't do it without friends and family' seem very trite to me. But this whole 'experience' has made me look at things differently. Obviously, I valued people before I had a stroke. But now it's different. These people we had dinner with all really helped me and Mon out. They stood right with me, when I couldn't stand. It's the same way Nana and Papa have. But these guys aren't family. It's not expected of them. It's different. I gives me a profound sense of two-way street belonging. We joke; we laugh. We make fun of each other. But if someone's hurt, we help. We're a tribe.
This must be close to that feeling we all seek. We're all trying to belong to something, it's just a question of what (or whom) you're going to belong to.
Surfing around the web, I find this great post by Laird Hamilton, world-class surfer and friend of Buzzy Kerbox (whom I have taken surfing lessons from!). He talks about 'the scariest wave' he ever took. At the end, he talks a lot about death and how the living worry about death. When you're dead, I imagine the death thing won't bother you much anymore.
Today I visit Dashi's school. Dash is very independent and basically ignores me. However, he doesn't want me to leave and insists that I stay for circle time. At one point, I approach him to ask him about the project he's working on (some play doe) and he says: 'Ok. Bye dad!' I stammer: 'Ah... I wasn't actually leaving right now...' He says: "Oh yeah. Right. Circle time.' We have fun, though. And he does like sitting on my lap and bragging to friends that his daddy is here.
I lunch with my friend Chris, whom I haven't seen in a long time. Chris runs his own M&A business, and I'm jealous of all the risks he's taking. He talks me through some of his business. It gets me thinking about work and I find I can handle it. We have lunch in this bar and the first few minutes are rough for me, but I even things out. Focusing on the person talking helps - which is what I do most of the time anyway. I wonder if I'll take business risks like Chris does - go it alone, start my own thing - or will I have to stick with the big company and the insurance perks? Tough to say.
It's raining but I don't mind. I walk around, thinking that surviving the next stroke is not an option. Miranda says you cannot prepare for a stroke, you can only prevent. Early in this process, I got an an email from a stroke survivor (friend of a friend). He wrote: 'Heart attacks kill you. Strokes make you wish you were dead.' I read that email and thought: 'I gotta steer clear of this guy.' But he's right, in a way. I don't want to be too dramatic, but stroke prevention is top of my list because I'm not surviving a second one. I don't have it in me. But who knows, maybe I do... No one likes a quitter. And like Cesar (and Liard the surfer) says: 'It is better to die once, than to fear death constantly.'
This blog is such a downer! Head over the 4.0, the new non-web, for news on how to take pictures of tar trucks.
December 10th - 4 month anniversary
My notes from the visit with Dr Miranda are updated. Scroll towards the end of the page on Miranda. Lea sends me this quote today:
Sometimes it proves the highest understanding, not to understand.
Good ol' Gracian never had a PFO though, did he?
Looking over yesterday's post, it probably wouldn't be a good idea to have the doctors wrestle. Perhaps Scrabble, with Tara as referee?
Believe it or not, it just hit me that today is my 4 month anniversary. I always think of my stroke as happening on the 11th, but that's the day I awoke after the stroke. My stroke happened on August 10th, 2009 at 1:35pm. Exactly four months ago.
I walk a long time after dropping Dec off at school. I really want to continue my AM walks, even when I restart work in January. I'll have to push to make that happen.
We have dinner at a Chinese restaurant down the street since part of tonight's proceeds go to Jefferson Elementary - where Dec goes. The food is great, but way beyond the pasta-loving Donovan boys. At one point, Dec is telling me something, motioning with his hand and -- WHAM! -- I get hit with a bad spins. It's only a second or so, but wow, it's a big one. I recover, and I'm calm. It's not a stroke - most likely my next stroke (which is not going to happen because I'm never having another one) would not be in the cerebellum region. The whole table lurches for a split second, then flips back. I barely flinch. Dec continues his story. Steve, a nice guy sitting next to me, keeps right on talking about how music programs in California are shot and gee it's great that my son takes drum lessons across the street.
After a few minutes, Dash has to get out of there. He and I head off to find Christmas lights (what we call 'Bonanzas' in the SF-Donovan family). I'm fine; I adjust. But I wonder how much this thing has changed me. Has it affected my ability to tell jokes, or get people to feel comfortable around me? Since some things 'take more work' will I simply avoid them in the future?
I don't know.
If this post was too much of a downer, then head on over to 4.0, the new non-web blog. The post tonight is, I daresay, exceptionally funny.
I'd like to get Dr. Miranda and Dr. Tuzcu in a smack-down, death-cage match. I'd like to see those two little doctors battle it out - mano-a-mano. It wouldn't matter how much they discussed medicine; they're beyond that. They need to go at it. As the boys from Lynn used to say: 'You wanna go? You wanna go?'
Miranda disagrees with Tuzcu. 'You want to stay safe?' he says, 'Then stay on Coumadin and get this thing fixed in a couple years. You want to screw around with percentages and odds, then take Plavix and Aspirin.' I like Miranda. No punches pulled.
We buy a Christmas tree. We try to convince Dec and Dash that the tree is going in the truck and they're going to ride on the roof. But they don't fall for it - not even for a second. We get home and, after some adjustments, get the tree decorated. Dash says: 'This is the best Christmas ever Dad!' He says this every year, and every year I believe him. The boys put most of the ornaments on, saving 'special' ones for me and Mon. They do a great job. Dec sings absent-mindedly in Chinese. I say: 'Ah... Dec... What's that song?' 'It's a Chinese new year's song. Want to hear Spanish Christmas?' I look at Mon. She says: 'It's Kindergarten, baby, get used to it.'
I drop Dash at Cortney's and meet with Dr Teng; the notes are updated (look for the post-Cleveland visit notes towards the end). He's a great human being and a great doctor. I think he also likes me because I'm not 140 years old with faulty valves. Seriously, most of the people in his office are stone-deaf, and barely coherent. It must be refreshing for him to talk to someone who talks back. He says: 'You're the best patient ever! I have never had a patient send me notes, and now you've done it about 5 times.' Like I wrote earlier in the blog, he's one of those people you want worrying about your heart, but not someone you want telling a joke at the Christmas party. Anyway, he's a fantastic person - and a great doctor. With my obsessive questions and his emphatic knowledge, we make a great pair.
We talk for a long time. He brings up excellent points about why Tuzcu would think my PFO is so small. 'He probably sees the 100 worst PFO's every year. Yours probably looks small to him. Let's get back to our original goals. First, what caused your stroke? Second, no more strokes! For the first point, there's nothing else that we could know that caused your stroke besides the PFO. Secondly, if you really don't want a stroke, Coumadin is the way to go. That said, let's talk about Plavix. I do not think you should just go on Aspirin.'
That's where it stands. I'm getting one more neuro opinion (besides Miranda) and then we might move to Plavix from Coumadin. I still think we're going to fix this thing, probably in a couple years. This has been Teng's position all along.
I get a Taco while waiting to pick up Dec from school. I get a case of the spins walking down Irving to the Wells ATM. What is it with this ATM? It's my spin nemesis. The ramp might be the main issue. Anyway, I survive. In Nick's, the Taco Shop, the crossword puzzle helps me tune out the crowd and the noise.
I take a nap at home, maybe the Teng meeting wore me thin. I did get a chance to cheat the parking at St. Mary's, which brings a modicum of satisfaction. In all, I'm used to the ambiguity, it's the reality that bugs me sometimes.
December 6th and 7th
The 6th we arrive back on the west coast. I now do crossword puzzles on take-off and landing and I'm fine. So my anxiety is down, but I think I'm now addicted to crosswords. I never knew these things were so interesting! I can feel my frontal cortex engage and try to find the associations. I think I could walk a tightrope across the Twin Towers so long as I had one of those easy, confidence-building crosswords they sell at the airport in hand. Anyway, I smoke through two of them.
Then it's time to see those boys! It's like a shock of happiness to see them. They climb all over us. It feels great. Sometimes, I can't believe Mon is the one who convinced me to have kids. It amazes me. She talked me into it! I still can't believe that. Where would we be without those boys? They don't even ask where we went. 'Cleveland? OK! A Rock n' Roll truck for each of us? OK! We went to Pixieland! We rode a roller-coaster! We saw toy trains at Mr Greenfield's! Nana Papa let us watch that Rudolph show on TV. We weren't scared by the Adomanable Snow Guy! He went like this: 'EEerrrrrgggghhhaaaaahhhhh!'
Then it's off to see Santa. Every year, Santa drops by the Diablo Country Club. I'm not sure if this has to do with me and Monica getting married there, or if it's a regular stop. But every year, there he is. I'm sure the club covers his dinner. There's a big crowd, but I do OK. Waiting for Santa, I have to sit down. There is still something about crowds, maybe noise and standing... But it's a slight set-back, nothing big. I sit with Dash for a few minutes and I'm fine. It feels like the building has suddenly 'left the dock' and we're awash in some storm. But it passes, or maybe I just suck it up. Sometimes, it's tough to tell which.
The boys do great with Santa. Last year, Dashi asked Santa for a fire truck. We forgot to explain to Dash that the gift wasn't coming immediately, that our goal was to review with Santa what was coming up for Christmas Eve. Anyway, Dash says: 'Fire Truck' then stands there, waiting for Santa to deliver. He's looking at him, thinking: 'OK Mr Magic Toy Man, make some you-know-what appear if you're all that...' It was a rough night. And Santa's brand definitely suffered. But this year, we explain things while waiting in line. Santa is just listening. We'll get the toys later - much later. It all goes well.
Dec plays a trick on me. I'm getting some food and he walks around the corner. I didn't realize it, but there's an open door between the food buffet and the next room. 'Hey Dad!' he yells. I turn, he's there smiling at me, waving. I laugh: 'You got me!' And like that, Christmas arrives.
December 5th - finding my Inner Rock Star Captain Ahab
We hit the Rock n Roll Hall of Fame.
Look at these guys! Mick Jagger. Joe Strummer. Little Richard. The King. Huskur Du. Chuck Berry. The New York Dolls. What would they do if they had a stroke? I can't help but look at the videos and pictures and think: 'How can these guys do what they do, act like they act, drink like they drink, drug like they drug, and not have a stroke?' Maybe lots of illicit sex decreases dramatically your chance of stroke. Interesting theory. Should I tell the wife?
We arrive pretty early, so the crowd is not too bad. The display is circular, so we walk around and around. The spins set in a little bit; the floor starts moving. Then I think: 'Where's my inner Rock Star? What would Joe Strummer do?' Who cares if the floor is moving? Let's go check out The King's Cadillac and his dad's working permit. I have to walk all the way around the first floor exhibit one time, getting my bearings. After that, I'm fine. The key to long-term recovery is recognizing what's scary and what's different - and then crushing it. I'm going to Pete Townsend wind mill my vertigo away.
The Hall of Fame is an interesting experience. I'm not a big rock paraphernalia guy, unless it's yard sale material (already discussed earlier in the blog). But I'm pretty impressed with what's here. I listen to Huskur Du's Zen Arcade, track 'Turn on the News.' I'm pretty shocked this tune is on the '100 songs that shaped Rock n Roll' wall. Andy Phillips introduced the Du to me, by way of his brother Pete. This was years ago, maybe 1986? I had no idea these guys were so well known. This makes me strangely happy. I flip over to Fleetwood Mac's Rumors, then skim through the others. Mon says: 'Don't you own most of these albums?' She and I have a great discussion about music while eating mac and cheese. Bottom line: I like it all. The HOF shows how 'Rock' really is a mix of everything. Louis Armstrong plays on one of the first Will Rogers albums! And Bob Wills sits across from Nirvana. The only disappointment is Eric Clapton. That dude is in here three times! This proves my point that he is the most over-rated musician ever.
And these doctors! No straight answers! Even if I could nail the gold doubloon to the mast and shout 'This gold piece for the first doctor to give a definite answer!' no one could take it. They'd stand there, my mute crew of lab-coat-clad mates. Let's go get that big whale, swabbies, let's figure out what's actually wrong with me. They'd stand there, shoulders perpetually shrugged. 'Maybe... take aspirin?' they'd say. Someone else would shout: 'Be brave! Get that device implanted!' But if there were 20 crew members, I'd have 20 opinions, and the white whale would still be swimming around my blood stream.
We head to a 'vintage stuff and record show.' I plunk down 50 bucks for two Clash 45's. This is typical vacation behavior for me. If it's a pink elephant coat hanger that doubles as a foot rest and I'm on vacation, I'll buy it. We head outside, where it's snowing a little. I tell Mon: 'It's snowing, let's get a latte or something...'
At dinner, the parents next to us talk to their teen-age daughter about pregnancy. There are too many classic quotes to cite here, but we're both happy with boys. How do Dads talk with their daughters about the 'heat of the moment'? I could never do it.
And what about Cleveland? What about this town that broadcast the term 'Rock n' Roll' over te air waves? For all it's Rock n' Roll history, Cleveland is quiet. I felt like I was at the library the whole time. There is simply not a lot going on, and fewer people. Buildings are beautiful, old, in ruin and empty. The houses stand majestic in money that left town a long time ago. I tried to think of several ways Cleveland could recover - just brainstorming - but nothing really came to mind. I won't forget those steel baron mansions - so many of them - lined up like a McSuburb of the 1920's.
December 4th - the big day at the BIG C
It's dark when we wake. The alarm sounds three times (Mon patiently hitting snooze). Finally, I say: "Yup. I'm up! Helloooo Cleveland." I had a dream I ran for mayor of San Francisco. Everyone told me: 'You'll never beat Newsom.' But I said: 'That guy is never here! I promise I'll stay in San Francisco. I have no ambition beyond getting rid of homeless people and making Fisherman's Warf less embarrassing.' In a strange twist, I end up running along Pier 39 in a jogging outfit. Some creepy old Russian car is following me and finally heads me off. The dream ends with the headlights blaring in my eyes. In the shower, I think: 'Should I run for mayor?' It's one of those ideas in between sleep and reality that seem so good, so simple. The idea lingers. Should I run for mayor? Self-editing note: We're watching Season 4 of The Wire, in which a lead character runs for mayor of Baltimore; this could be an influence.
Under the crisp, blue sky and crystallized buildings, the Cleveland Clinic (aka 'The Big C') reminds me of Las Vegas. Everything here is clean and new. But if you venture 1/2 mile away, it's the same old rust belt buildings in a row and lonely blinking stop lights. No one even tries to hide the fact that this group of buildings looks like it was planted here by some alien race bent on curing humankind. Like Vegas, people come here to bet. The big bet here, the roulette of all roulettes, is science. It's certainly my new god. If your heart ails you, if you need a new lease on life, hey - if you need a new heart - come place your bets at the Big C.
The moon watches us - a silver coin - while we trudge over to J1-5 to check-in. The moon says: 'Good luck on the wheel, I'll see you later.' Tests and blood draws are uneventful, clean, and quick. It's like getting shot. If I were to get shot, I'd want a clean one, right between the eyes. No mess, no fuss, no long recovery period. The Echo room is very warm, I'm talking 85 degrees at least. I take my shirt off and lie on the table. The Echo nurse laughs at the heat and we talk about the weather. When the nurse with the saline comes in and comments on the heat, I say: 'It's so hot in here, we've all decided to take our shirts off!' That's my funny comment for the day. The nurses (both women) do not comply. When I finish my EKG, blood draw and Echo, I meet Mon at the waiting area. The moon is fading, but still there. 'How'd you do, man?' he says 'That roulette treating you well?'
Next up, Dr. Tuzcu, aka 'Dr T.' He pities the fool!
We wait for a long time, which I don't mind. If he's spending quality time with other patients that means he'll do the same for me. I have updated he doctors notes, so check them out. Look in the Tuzcu page at the end for details. Mon and I talk, and surf the web on the Big C's network. The Summary:
The PFO is very small and the 'totality of the evidence' does not tell Tuzcu to 'close this thing right now.' While the PFO may have been the cause of the stroke, it's such a small PFO and the blood traveling from right-to-left is so minimal, this doesn't warrant an immediate closure. Rather, Tuzcu said we should check with a stroke-focused neurologist and ask two questions:
- What's the recurrence of stroke in PFO fixes? What's the safety of these devices versus simply taking medication?
- Do they recommend aspirin, Plavix or Coumadin long-term?
He said: 'If the neurology guys say you must stay on Coumadin, then come back and see me and we'll close this thing. But if all you need is aspirin, then just take aspirin.' He is very confident the devices are safe, but thinks that my PFO doesn't warrant a device implant. He's very surprised at my acceptance of long-term Coumadin use. The risk of bleeding is not insignificant and the drug does introduce life-style changes. He believes that I'd be fine on aspirin, or maybe Plavix.
He shows me the details of the Echo from this morning. 'See the bubbles,' he says, 'You have maybe one or two. Most people, they have a HUGE wave of blood going the wrong way in the heart. Yours - bah! - it's nothing. Half the time, I don't even see it.'
He has an accent (maybe Hungarian? 'leetle leetle bubbles...') and listens intently. He seems surprised I came all this way. 'You travelled 6 thousand miles,' he says, 'Ask me all the questions you want.' And then later, says: 'I'm trying to give you an answer I think will make your trip worthwhile. But you can find 10 doctors and 10 different opinions on PFO. From 'close it now it's a time-bomb' to 'don't close it you fool.' You deal well with unclear answers, but not everyone does.' About the only thing he's sure of is that I do NOT get surgery. The funniest moment is when he says: 'Surgery? Surgery is crazy! For a PFO only? No. No. No. Don't say that again. Why are you thinking that?'
We go back to his office and watch the TEE videos. I tell him my theory about my long flights to Atlanta, SF and back to Boston. He shakes his head, 'perhaps...' he says, but he's not convinced.
So is this stroke a random event? If I get the PFO fix, they'll put me on aspirin for life anyway. If I talk to some neuro guys and they say go on aspirin for life, then I'm done. At least unless and until I have another 'event.' Or do I get the PFO fix, go on aspirin, and be double-sure? But then I have to deal with the procedure - not risk free.
The moon is coming back up. I haven't lost here in science-Vegas, but I'm not showing Aces either. It's a well-informed push.
I'm worried about my first plane trip since 'day of infamy. But the flight goes by without any major events. I discover that doing crossword puzzles really helps the nervousness at take-off. By 'doing crosswords' I mean that Mon helps me find 50% of the answers, I struggle through another 20% and then look up the answers for the rest. I'm hoping we find a 'Rock n' Roll Crossword' at the Hall of Fame in Cleveland this week-end. I read an article in Newsweek about the Cleveland Clinic. I'm relieved to read that doctors here are salaried and therefore not necessarily motivated to 'push' you to have procedures.
It's a travel day, which reminds me of working. I don't travel much at all with Microsoft, but before Mr Softie I travelled a ton. It's great having Mon along because I can build my confidence while still knowing she's right there. We get on the plane, do some crosswords, hit Avis upon landing; I drive all the way to the hotel - no problems. Later, after dinner and some supremely cheesey Christmas music, lying in bed, I get some vertigo. The spins accompany stress, or new environments - and this trip has plenty of both. But they're not too bad. I talk myself through them.
It's cold here. Streetlights blink on and off. Steam from a generator at the Clinic puffs away. Cleveland.
We head to Danville for our pre-Cleveland trip. The boys love going to Nana and Papa's. They love it so much here in Danville, they don't even ask where we're going. 'You guys? Going? Ah... OK... See ya..." It's so great having N&P close. Mon and I are spoiled. How would we organize a trip to Cleveland without them? Leave our kids with uncle Charles? Hellllllooo! We want them non-emaciated when we return!
Today at school Dec and I watch kick-ball - some of these kids can really kick it. I check in with Kathy, the woman behind the glass window we walk by every day. I say: 'Declan won't be here tomorrow and the next day.' She says: 'More than 3 days in a year constitutes truancy. To avoid that, you'll have to fill out this form... let me get it... yes. You have to check with the teacher, create a list-' I say: 'What if... Dec's not here because... I'm sick. We have to go to a doctor far away to check on... something for me.' 'Ah,' she says, 'Then I'll mark him sick tomorrow and Friday. We're done.' She smiles. 'I didn't know how much information you wanted,' I say, 'I'm a minimum info kind of guy.'
I pick up Dash at Miraloma. I catch him kicking a girl's book while she reads it. He gets a real tongue-lashing from one of the teachers - and he catches me smiling! Ooops.
We eat dinner with N&P. Dec counts from 10 to 100 by 10's. Nana says: 'Where did you learn that?' Dec says: 'It's called Kindergarten baby!'
December 1st - sales of 'Grow Roots' shock the folks at CDBaby.
Nothing says recovery like a trip to the SF Zoo. As some of you may recall, the SF Zoo likes its patrons to get real close to the animals. So after downing a 5th of Kettle One and smoking three joints, I drove Dash to the zoo and yelled as loud as I could at the tiger. Unfortunately, the new fence they have really cuts the sound off. No luck provoking the tiger! I sure was hungry (after those joints) but I resisted the temptation of the corn dogs and drove Dash home. We did see two different kinds of Rhinos. Dash loves the monkeys and the swing set. He regrets not riding the train.
At Gymnastics, I try my spin jumps off the small trampoline and realize that spinning in general is going to be one rough road for me. I think I should install that bouncy floor all over the house. It makes things easier. I take some notes about a daily regiment of exercise and set my alarm clock for early tomorrow. We'll report on that later...
Declan has his drum lesson after school (which he rocks). I walk around the neighborhood. As ironic as it sounds, my own motion (and looking far away) is the best thing for any 'balance issue.' The toughest thing for me is standing in a line at a busy place. Since I like coffee shops, this definitely poses life-long challenges. I get at coffee at hallow, and have to wait outside while the woman makes my cappuccino. She thinks this is strange, as do I, but there's no need to share details.
Dec and I walk home in the fog. We setup some Christmas decorations at home, which is fun. I'm tired, but I hear those boys laughing upstairs...
November 25th, 26th, 27th, 28th, 29th, 30th
Hello there Rip Van Bloggerhead! I'm thankful for the turkey-induced stupor from which I know awake. I'm very thankful for the new Shakey Milks CD! (Sorry, couldn't resist one last self-promotion). I'm getting a play-by-play on the garbage man from Dash as I write this. He just dropped a can, now he's picking it up. Dash is shouting out the window to him. He says: 'Hey! You dropped one! Where? Right THERE!' Dash also knows his letter really well. He just spelled ZOO on his little type-writer translator (purchased at a Yard Sale for 50 cents!). He finishes spelling Zoo, then asks: 'How do you spell Santa Fe?' Hmmm... Did he read that off one of his trains?
Yesterday, we head to Ocean Beach. Contrary to what some non-San Franciscans think, the Sunset has great weather. Mon and I get a Christmas picture of the boys, digging sand and running in the water. Mon names the picture 'A Winter Wonderland.' Adam, Cortney, Nate and Matthew join us. Adam and I kick the soccer ball back and forth - this is great for me. A bulldog named Charlie (of all names) steals our soccer ball and puts a hole in it with one of his teeth. The dog owner says: 'I'm so sorry!' 'No big deal,' I say, 'I have a brother named Charlie. He looks just like this guy!' The beach is great for the boys, so much wide open space. Putting Dash to bed, he says: 'Daddy, I like this house. But... It's a little small.'
Saturday is swimming. I'm getting to that point where I now enjoy activities. I'm not constantly struggling with spins or anxiety. I sit at the edge of the pool on a bench with Mon and Dash and wonder 'When did this bother me so much?' I simply enjoy watching Dec in the pool. He's pretty amazing. And today he wins his White Ribbon! Some refer to his swim school as the 'Swim Nazis.' But we love 'zee prograhhhm,' as it keeps Dec focused on swimming, not singing sons and saying 'la la la I'm in the watah.' Dec dives really well now and can swim almost the length of the pool under water (which worries me slightly). We celebrate with a hamburger lunch at Barney's. Dec is proud of his white ribbon, and I realize that most kids love awards. Perhaps because it validates their activity in the adult world? I remember when I won an award at work, and Dec was so interested. He wanted to know every detail of how, why, etc. He might have been amazed that his dad could actually win anything. Or maybe he wanted to know what this strange world really was. I'm generally luke-warm on awards. The cynic in me says that anyone who gives you an award wants something in return, and the bargain does not favor your side. But who knows...
Friday, I have one little incident, which, in a string of good days, isn't so bad. I'm at the ATM depositing insurance checks (long story - and you guys are lucky I don't bore you with all the insurance company junk I have to manage). I get hit with a pretty large dose of the spins. These on-sets definitely have to do with switching tasks. I'm running alongside Dec as he rides his bike - everything is fine. But when I quickly stop at the ATM, enter my code, read the options, etc. I get a heavy case of the spins. It's not so heavy that I'm scared, but it's pretty bad. And I'm on a busy street corner with Dec. I tell Dec to stay close and I watch the horizon for a bit. It fades. Once I'm running again, I'm fine.
On the big TG, we cross the bay on that rickety ol' bridge and head to Nana and Papa's place. We end up with 25 people at dinner - like the Donovans! It's a great time, and the boys love their cousin Teddy (1 year old). My 'thankful' list goes something like this:
I am thankful for...
- The luck that put this stroke in the posterior of my cerebellum. While a pretty geeky 'thankful item', trust me, this one is important. Anywhere else and I would have lost control of my right arm and hand and I'd probably be walking with a cane right now.
- For Monica.
- For Music. I guess Meme should be thanked as well, as she's the one who convinced me to take my first piano lesson, which I did not want to do.
- For the boys. Nothing lifts the ruminations like a little voice saying: 'Heyyyyyyy! Street Cleaner!!!!!'
How do you like that new red ink up there at the top of the page? That's right! Just in time for the holidays, we're announcing the new Shakey Milks album. This blog has never been about self-promotion. It's more self-indulgent retrospection with a splash of narcissistic neurosis. But hey, I'm always up for new skills. As we head into Black Friday, why not stock up on Shakey Milk CDs? They're cheap, make great drink coasters and you don't have to leave the comfort of your own chair to buy the tunes. If you feel that reading this blog is payment enough, well, send me an email. We can talk. If you do listen to the music, be sure to write a review on CDBaby!
Today is busy, and this makes me worry again about life at work. But I start out like a racehorse. I meet an old friend from Microsoft for coffee at the Ferry Building's Blue Bottle. We talk work, this year's numbers, next year's plans. It's all great. I still have to look away from time to time while listening, but not big deal. Charles comes down for a visit after. He and I have a great chat about fatherhood, being supportive of your kids, music, etc. It's great having Charles close by. He and I don't hang out as much as one might think. But he's always there. We sit on one of the benches outside the Ferry Building, and catch glimpses of tug boats and even a crab boat, going by. He still drinks drip coffee, which amazes me.
After getting a $63 ticket even after paying the parking meter, I head to gymnastics. Today, I'm a bit weary and the work is tough. Spinning around is tough for me, period. Not sure if this a post-stroke symptom or something from the 'old me.'
Mon, Dec, Dash and I head to the SF Conservatory of Flowers for the 2009 train exhibit. This year's display is pretty amazing. They have an AT&T Field replica, made of shower shelves and a pool table. The Japanese Garden entrance made of motherboards is always my favorite. I also like the Mint Building, made of cassette tapes. The boys love it, and take pictures all over the place. I get the swoons here and there. Towards the end of the day, every floor feels tilted to me.
November 22nd and 23rd
Sunday we head to JP Murphy playground to visit with friends, take a yoga lessons and eat snacks, all provided by the US Government! Outside, I have one of those 'this used to bother me but now I'm fine moments.' The last time I was here, I couldn't even look at the kids merry-go-round ride. Now I push Dec and Dash around it! I chat with Al, Drew, old friends. It's cloudy and cool, but a great day.
Inside - a whole different story. I believe rooms with curves bother me. Non-linear architecture is out for me. I'm a FL Wright guy, for sure. This floor slopes up... down... up... down... While I have never fallen due to my balance issues, I simply cannot believe I remain standing. Very strange. Dash and I do some yoga, but he mainly runs off to get chips while all the other kids are on their mats, practicing poses.
When talking with people inside, I find it very stabilizing to look far away. I wonder if this bothers people, or if they think I'm not listening. I still listen intently, but I definitely need to 'look away' while I listen from time to time. I practice this with Drew and Al. They don't seem offended. Outside, Drew, Dec, Dash, Anabelle, William, Joey and I play basketball with a tennis ball. I'm fine with the motion, the jumping.
Today it's back to business. I always try to simulate a workday downstairs. I read, research, play music :) I pick up Dec and we stop by Starbucks (because it's so close to his school!). Inside, that curved architecture gets me again. It might have been the sloping entrance, or the fact that the guy took so long with the gingerbread latte, but I have to really focus to stay put. Dec has his spot by the window, cookie dribbling down his chin. I don't want to, but I say: 'Let's go, man.'
Whenever the spins prevents me from letting the kids doing something or when I have to shift goals with them around, it bums me out. I don't want to be the 'Dad that can't go into small places' or the 'Dad that can't stand non-FL-Wright architecture.'
Otherwise, this is a solid day. I manage the spins, they don't manage me. Now we're fine tuning the adjustments.
Mike Donovan calls me about some new music his friends have him onto. We chat for a while, about music, recording, different bands. Robert Wyatt is good, but strange. Mike is one of those great people who understands the best questions to ask are not 'How you doing?' and 'Are you feeling better?' but 'What are you up to?' and 'What are you listening to?'
The stroke is dead. Long live the stroke.
Today we head to Hyde Street near Fisherman's Warf. This is Mon's idea and frankly I'm skeptical. The In-and-Out Burger is nearby, so we try it. The swimmers from the aquatic park next door really freak us out. The sea lions and seals we're used to, but people. In this water? Some guy rounds a buoy - swimming! - while a sea lion croaks on a dock twenty feet away. We board the Balclutha, which proves challenging for me. This boat is swaying back and forth, even while docked. I'm fine top-side but cannot go down below. No way. The boys run around, finding stuff on a list so they can earn their Park Ranger Badges (a nice ploy by this place, by the way). I like looking at faraway landmarks (GGB, Alcatraz, etc) but sometimes the motion really gets me. I'm also beat-tired at the end of this excursion. Not sure why, but this outing really lays me out.
At home, the boys build a harbor with blocks next to the latest train tracks. Dec draws numbers on the blocks. I play for a while, then have a nap. Dash wakes me, peeking in the room: 'Daddy? Want to wear my Ranger Badge?' he says.
It's always great fun to do something that bothered me before, and now I simply waltz right through it. Declan's school yard is a perfect example. This crowd of kids, the pledge of allegiance, used to really throw me off. I could barely stand it. Sometimes on Fridays, Dec and I stop by Starbucks. This used to be really hellish, with me trying to calmly convince Dec we needed to leave. Now I can sit there, look out the window, wasting time and money like everyone else. The motion bothers me, but not nearly as much.
Today we go to Hallow, a small coffee shop near where Dec takes piano/drum lessons. This place is tiny - a hallway, basically. It's a bit thin for my taste and at one point, I ask Mon: 'This floor is not right. I mean, do you feel a little slant?' She demurs, saying: 'There might be a little tilt here and there...' But I hang in there. Something about high tables and thin hallways definitely gets to me.
I never fought depression like I saw my sisters do. I never had that kind of battle. But there must be some difference in serotonin levels now. When I used to play Broken by Jack Johnson, I would cry halfway through. I'd get all cracked up. Now I blow through the tune. It's a great tune, very simple. In a strange way, I miss that sadness. To be able to connect that deeply. To play a song that makes you cry while you play it. That's heavy. Is it strange to be sad that I'm not sad? One time, I played that song and for Mon and said: 'I'm definitely broken down. But you got me through thick and thin, so this is one of those parts.'
There also must be some dream-processing going on as well. I have dreams that I'm hanging off the edge of the earth, or stuck in this really complex cave where the walls constantly change shapes. It's freaky.
I head to 835 Market today (Microsoft building). I meet some old friends. The team really has taken me on and everyone wants to know status. It's cool. I do fine, which is a huge confidence builder. I don't mind talking business, although we tend to keep that to a minimum. I walk around the mall - the same mall that freaked me out last week. Anyway, this is a great day for me. Lots of changes going on with the team, but thinking about customers got the work juices flowing and it was OK. I did have a couple minutes, standing in the hallway, talking with people. And, generally, people talk too much. I thought that before, but now when I think that, the floor starts moving too. Over-all, this is a good step.
At one point, I'm talking to this one person and I'm wondering 'why is he acting so strangely?' I know him pretty well, and he's acting very stand-offish. I'm pretty miffed, actually. It's only much later, sitting at home, that I realize this was a different guy - someone I barely know! Pretty funny.
At home, Dash is still unwell. Dec and I go for a bike ride, which means I run after him while he rides. We find streets we don't know, right here in the Sunset. A good work out.
Interesting article on how exercise helps reduce stress and anxiety in rats. This is great news for rats everywhere! But most rats I see are already running around, so... not sure how this helps. But seriously, I have started a regiment of yoga, Pilates, etc. I might even job, maybe get a pair of those funky foot-gloves.
I'm trying to simulate some work activity. I meet Adam for lunch at one of his worksites. His company, CEI, is doing all the electrical work for the new stem cell research building at UCSF. We walk through the work site, staying away from the really high spots. The building is pretty interesting, the way it hugs the hill. I'm fine the entire time, with maybe some shakes as Adam asks 'You want to walk on the scaffolding? No? Really?' We eat lunch at UCSF and one of the general contractors sits down with us. I'm thinking of really trying to embarrass Adam here, but I stay quiet. Ruining a friend's career could be fun, but also cumbersome. At one point, the guy says: 'You work for Microsoft?' and moves his chair away. I'm thinking: 'Bring it on, baby. It's gonna be like that, is it?' But he's a funny guy, really nice. It's interesting to hear work terms that mean absolutely nothing to me. Is this how Mon feels?
Lunch is touchy at first - lots of people. But I ease into it. Noise is noise, after all. This is a great confidence builder for me. Driving off to Radio Shack, I start thinking maybe I can work again. Maybe the over-stimulus is simply a new reality.
I walk Dec home and work on building my new computer. It's actually not a new computer, but a bunch of spare parts. I plug the thing in, all the fans come on, but nothing else. This is what happens when you send a software guy to do a hardware guy's job.
Dash wakes up, gasping for air. He has some 'croupe' (French for 'really bad cold') and can't breathe. I panic and call Mon who is out at the Miraloma board meeting. I turn on a steam shower and sit with him for a couple minutes. The cough subsides. I do fine with the intensity, but the room definitely spins a bit. Stress educes roller-coaster-like feelings. This might be because in stressful situations, our eyes dart around the room, thinking of solutions. This might set me off a bit. Not sure. But I hold it together and get Dash back to bed. His intake of breath frightens me. Man! It sounds bad.
Mon brings home a humidifier, which we setup next to Dash. I have to hit the sack early because I'm going to up a few times tonight I am sure.
I hit the balance beam today at gymnastics. I'm up on that thing like Nadia Cominawhatchamacallit (thanks Sara for correcting my earlier mistake!). We have actually trained on the lower one before, but today I move up to the high one. It's pretty fun, no big issues. The only couple things that still really trouble me are:
- Spinning. I'm supposed to pick a spot and spin 180 or 360 degrees. This is very, very tough for me. I tilt over, fall down. Strange. I get dizzy very quickly.
- Summersaults or forward rolls. The after effect reminds me of the stroke, so this obviously doesn't score high on my list.
Dash, Dec and I build an elevated Thomas track in the front room. I can tell I'm tired because I keep telling Dec 'this won't work, this won't work...' It ends up working great. It's amazing how the kids think. I head for a nap after that - gymnastics day is always a tired day...
Updated doctor notes. I generally made them neater, so have a look if you like. Mon and I are waiting on the Cleveland Clinic visit in early December to finalize the decision and setup a long-term plan. Right now, I'm thinking I'll get a fix next year, but I might wait a couple years.
These days, I'm focusing on what still bothers me (crowds, lots of motion) and figuring out ways to 'test' myself. I'm trying to simulate a work week, albeit a shorter one. The key, as always, is to understand what's different and what's 'lost' and adapt.
You get what you get, and you don't get upset.
What bothers me?
- Large crowds. This sets off a swaying back-and-forth of the floor. I'm less anxious, but the motion effect is still pretty strong. I can work through this. Sitting helps. Talking helps (as you can imagine with me). I do well at a business meeting with our attorney today, even with a large window looking onto the Bay.
- Shifting focus / Changing tasks. I'm fine working on a given task or talking with multiple people. No real issue there. But it's the change in 'task' that sometimes throws me off. I drive to my friend's house - no problem. But when I get there, open the door, sit down in a new room, etc, it feels like I'm on a boat. This is especially true if the task is involved. For example, reading. I can read fine, no attention-span issues. But when I put the book down and play with Dash, there's a couple minutes of 'transition time' that throws me off a bit.
- Confidence. Can I get back to work? Can I handle a work week? Will I still get tired like I do now? Will I always need a nap? Life is better, but this stuff worries me...
Today I have a pretty major revelation. We relax at home all morning, playing volley ball with a balloon in the front room (my idea). Dec suggests that we wash the car. Is this a role-reversal day or what? Dashi feels pretty sick (high fever) so he hangs out upstairs while Dec and I go to town on the Prius. We get that baby sparklin'! The guy down the street, who washes he car every week-end, peers down at us while we're vacuuming, scrubbing, etc. Actually, Dec does most of the work, since he can reach the tough spots. And just in case anyone thinks I'm running a child labor camp over here, we also play soccer and Frisbee in the backyard.
But my revelation comes later. Adam, Cortney, Nate and Matthew come over in the afternoon to hang out. We have a long discussion about art, music, creative process, etc. If you want cabinets, you hire a carpenter. Don't hire an artist to build you cabinets. Cortney knows this. She does all the artwork for my albums.
But my big revelation comes even later... Dash is heading off to the bathroom and he says: 'Hey Dad! I'm goin' potty! OK?' I say: 'Sure Dash! Go for it!' I think: 'Why does he always tell me he's going to the bathroom?!' But then it hits me. Dash doesn't tell me he's going potty because he wants me to know, or because he's proud of it. Dash tells me he's going potty so that I stop asking him: 'Do you need to go potty? Have you gone yet? When was the last time you went?' Dash tells me he's going to the bathroom because he's thinking: 'I have to let this dude know every time I take a leak, otherwise, he'll be asking me all day long.'
I'm stunned. My youngest kid is manipulating me for my own good. My eldest is helping guide me with household chores. But isn't this how we all operate? Getting what you want from people is part of interacting with them. If I told everyone every strange thing that happened to me since the stroke, every weird feeling or 'upside-down' sensation, I'd need 20 blogs and a radio talk show. So we smile, we wave. Someone says: 'You doing better?' Well of course I'm doing better! The Cerebellum is over-rated! I'm better without that damn thing, especially the right side! Do you really want to know the truth?
Like Dash, I let everyone know just enough so they don't want to know more. With that, I have to go potty!
November 13th and 14th
Should I call this blog: 60 to however-many-days-I-feel-like-blogging?
I'm glad I waited a day before writing about November 12th. Recovery is not a nice, clean trajectory. It's more like a bumpy take off with heavy cloud cover. Thursday I head down to 835 Market, the Microsoft building. Already that morning, my balance bothers me a little. The morning shower-and-shave is still the toughest for me. This is most likely due to the shower (confined space) lots of motion (scrub, scrub, scrub) and, well, holding a sharp object (razor) to my face. Anyway, the morning is a little rough around the edges. I meet my friend Atul at the Peete's coffee in the food court. The place is packed and noisy. Picture any mall-in-America type setting and you've got the picture. I'm fine, no panic. But the floor is moving. It feels like I'm walking up-hill all the time. Walking actually helps. Waiting in line is impossible. I tell Atul: 'Mind if we take a stroll?' He says fine and we walk around the mall, then outside. We talk business, how messed up things are on various projects I sold last year. The thought of work doesn't over-whelm me, but I'm tired after about 30 minutes. We walk outside to Blue Bottle cafe and then part ways. He's a great guy, a beautiful human being. He sent me a statue of Ganesha to watch over me as I recover. He has two sons as well, and we talk about a family trip to Train Town.
So what did I learn? Crowds still bother me. Something 'happens' when I'm in a large crowd. It's no longer panic, but more balance. Perhaps my brain is still firing extra cycles to keep the balance issues at bay. When I enter a large crowd or 'an environmentally stressful' situation, these extra cycles are diverted elsewhere. Therefore, the balance issues return. I test this theory at the Glenridge Charity Auction on Saturday night. I'm fine talking in the crowd of people and can walk around. But there are times when I swear the floor is moving. If I step outside, or focus on talking with someone, the issues disappear - or nearly so. Sitting down helps. Leaning against something helps. Holding tightly to a chair or side of the wall helps.
I ask Mon: 'Is there any incline on this floor whatsoever?' She says: 'It's a little bumpy.'
This will be my focus for the week, trying to 'test' this issue and see what I come up with. Is this my real introduction to 'real world' interaction?
November 11th and 12th
Dash has a rough day. I know how that feels! He doesn't want me to leave school, so I hang around Miraloma in the morning. They have balancing exercises, which I try with some limited success. It's basically a skateboard without the wheels and you have to balance on a round wooden block. It's pretty tough, but I don't seem to be any worse than most. At circle time, sitting down is tough for me. I get the spins looking around, but I hide it from Dash and the other kids. Looking far away always helps. Sitting down helps too. Lying down is the best (but not always possible).
Alexander, my nephew, comes to visit! He surprises us at Declan's soccer class. Dec really gets mad at the end. His friend Cooper scores a mid-field goal, which irks Dec to no end. I try not to pull the old 'don't be a poor sport' thing because, let's face it, a mid-field goal is pretty outrageous. Even I'm a little ticked off.
Today is back to business. I'm trying to simulate a workday (at least a little). I work in the AM, organizing Quicken, trading some stocks. I run some errands for Mon and pick up Dash. It's a nice combo. Maybe I'll work 3 hours a day after this! Dash refuses to get his picture taken at school. He's coming into his own. I love his 'NO!' - it's not just a 'no,' it's a statement, a lifestyle, a complete rejection of everything we stand for.
Our kids reflect ourselves. If we're mad at them, we need to look inside for the answer. I think about this, as Dash does lay-down circles on the kitchen floor, screaming something about ABC pasta and not getting his picture taken, Would you rather be remembered as the father who spoiled your kids, or as the disciplinarian? I'm thinking the former.
Speed Racer has become another theme song for me. This is Dec, Dash and Dad singing Speed Racer. Dec is on guitar (tuned to a steady D). Dash is on ukulele. I'm on piano. The first time through, it's mainly me. Dec and Dash step up the second time through. At the end, Dec drops his pick into his guitar (a fairly common event, actually. This causes some delays.
November 10th - 90 day celebration?
I often think of my stroke as happening on the 11th, perhaps because that's when I awoke in the hospital, or maybe it's the fact that the 11th is easier to remember, given the terrorist attack anniversary. In any case, my big sis Maureen reminds me today in an email that today is, in fact, my 90-day 'anniversary.' She sent a poem to my sister Ailis for her birthday, which I will hijack, because I love it!
The big question: Should I stop blogging? I'm thinking of writing a book called The Luckiest Man Alive. It'll be a memoir, meaning I'll only exaggerate for dramatic effect. I've given myself the goal of starting the book on November 11th. We'll see...
But today is rough. Not sure why. Dropping Dec off at school, I'm fine. In fact, Dec wins an award for eating fruit every day (amazing the awards you win here in Cali) and gets a present from the principal in front of all 400 students. He runs up there, shakes the principal's hand. It's a great morning. On the way back home, I get some 'quick spins.' That's my new term for that sudden loss of orientation and balance. Ironically, my own motion seems to help. If I slow my pace, but keep walking, things seem to work out fine.
We head to Dashi's school to discuss his pre-school status with his school's directors. They love Dash! But the room bothers me. Man! The couch swallows me up, and the leaves outside the window move around and around and around. It takes me a full 5 minutes to get comfortable. I must have made-out with the Blarney stone, because I keep yapping away through it all. Listening to the directors, listening to Mon, offering my opinion (which no one really values, I mean, com'on, the father, having an opinion on his kids?). Anyway, I make it through. I think Moira (the senior director) can tell something is up with me, but she doesn't say anything. Mon says I was fine.
At gymnastics, we do some turns and it really throws me off. Whoa! The dizziness bothers me more because it reminds me of August 10th. I recover fine, but after a few attempted circles, we stop. It's a little strange because I felt like I was better at this before. I might be over-thinking it...
I play with Dash for a bit at home, but then I have to lie down for a nap. After the nap, I'm good.
Here's what still bothers me:
- 'Quick spins' happen from time to time. This is a loss of balance. More accurately, the floor feels like it's moving. I have never fallen due to these spins. I don't want to try walking with a cane, because I'm worried I'll love it too much.
- Fatigue. I still nap. But Mom told me that's OK, so I'm listening to my Mom! It's true I probably stay up too late (go to bed around midnight) but I can't hit the sack any earlier.
- My left eye sometimes 'drags' behind my right and it causes this strange focus/double-vision thing. It's very slight, and improving. The docs say part of the cerebellum helps visual processing, so this could be it.
- I have numbness on the right side of my face that is, frankly, weird. It just feels odd.
Here's what has dramatically improved:
- I can walk fine. I even run short distances.
- The balance training (gymnastics) has really helped. Above all else, this builds my confidence.
- The panic. I haven't had a 'serious' bout with panic in over 8 weeks.
Top 5 reasons you know you've made it through 90 days of stroke recovery.
5. You eat kale and think 'I hope that Coumadin holds up!' (Kale is very rich in vitamin K, which absorbs Coumadin, making your blood 'thicker')
4. The term 'you have a hole in your head' bothers you. You think: 'So what if I do have a hole in my head?'
3. You envy people who walk with canes. Man! It must be nice to have something to balance you all the time.
2. You watch a child play on a 'spin seat' at the playground and think: 'How can that kid walk after that?'
1. You are relieved to discover that everything important to you before the stroke is still important. You have very few regrets - none that can't be fixed with a couple yard sales and a perusal of the craigslist musical instruments section.
I am lucky. I am alive. I am the luckiest man alive!!
Signs of progress: I don't even think about walking with Dec to school. That schoolyard used to be hell for me. Way too much motion. I couldn't even stand up. Now I check out the kick-ball game, chat with Dec. We saw Anabelle, who informed us that she made 300 dollars yesterday on her lemonade stand.
I run errands today, short little to-do's that build my confidence. Pick up a new pump (done) mail Mon's knitting (done, but I messed it up), deposit some checks (done) pick up Dec at school (done, forgot snack). The spins hit me in the post office, but nothing big. We head to Pasta Pamadoro for a Miraloma benefit dinner. Here's the formula:
Donovan Boys + Spillane Boys = Mayhem at the Table. Dec, Nate, Matthew and Dash are all way out there. Did they put meth in the pasta? We escape alive, Adam wolfing down his chicken parm as they head for the door.
Today I put together Dark Hallow, with Den on lead vocal. The song still has room for Mike, Charles and Neal but it's not a bad first cut. Wait until you hear the new stroke album! Email me (upper right corner) if you want a CD copy.
Den sent me updates on the Travelall (see below). He also has me reading a great book, The Sea Runners, about four Swedes who escape from a Russian fur-trading camp. That almost sounds like the beginning of a bad joke, but the story is great. But the book brings up a much more personal (and yes, you guessed it) stroke-related issue. The story of taking off into the wild with only enough food for a few weeks makes me wonder how much I can really be independent from society. What if I needed to 'take off' and live away from Coumadin for a while? What if Walgreens loses a bunch of the big C in a strange Coumadin shake-down by the global mafia? It could happen... Or maybe I worry to much. My point is that staying on Coumadin 'chains' me to the infrastructure that supports me getting Coumadin. I couldn't be one of the Swedes leaving the Russian fishing village. I'd say: 'Hey guys. I hate being an indentured slave too, but the Walgreens here is excellent, and I cannot survive in a canoe for 20 days without my Coumadin. Furthermore, if there's no room for my guitar, then I'm simply not up for it.' While it's true I wasn't exactly Jack London (also a big fake) before the event, the C pills hang around my adventurous spirit, the albatross of my ailment. Unless I get a PFO fix...
But 'there will always be yard sales.' Out here, they call them 'garage sales' I guess because no one in SF has a front yard. Technically, they should be called 'sidewalk sales' but that's silly. Anyway, my serotonin levels must be back up near normal because I'm hitting the yard sales hard. Saturday morning before swimming, the boys and I hit one just up the hill. Here's the break-down:
- Train set, with all the tracks and trains - 8 bucks. Dec sees this beauty as we're leaving and asks the lady himself how much it costs! It's the same model as the one we have but all different trains. Bonanza!
- A model of a stegosaurs (held together by magnets, pretty cool) - 2 bucks. Dash loves this thing, I can't remember what he names him.
Sunday, before heading to Joey's train birthday party, we make a quick stop at a 3-family sale. Over-all, it's disappointing. I'm really proud of the boys because they see this Hotwheels race track (even I think the thing is pretty cool with the retractable race track and tower) but they both decide it's 'not really for them.' I'm stunned. I almost say: 'Who cares if you don't like it, you get the bag of cars for free and the track goes up and down when you touch that button! 10 bucks. This baby is priced to mooooove.' But I hold off. We walk away with:
- Lightening McQueen Shirt - 50 cents
- Tyrannosaurus Rex - 2 bucks. This thing roars when you pull its tail and it's almost as tall as Dashi who says: 'Dad, are you sure we can fit this in the car?'
After the train party we stop by Anabelle and Lexi's lemonade stand up the hill. We all joke at the brisk business the girls are doing while we sip our 50 cent lemonade. Talking with Drew and Juan, I get a little bit of the spins. This might be the hill or maybe the kids jumping all over Drew's truck. But anyway, I recover.
And that's life on Coumadin, my albatross.
November 7th - Mon's Birthday!
Let's sing those praises to Monique! Let's let that sappy I-love-my-wife stuff flow forth from this great blog like syrup off a maple in New Hampshire. Listening to my Bob Wills records (on vinyl, no less) provides the perfect background.
Top Ten Reasons you know you have a great wife (after a stroke)
- She acts very calmly, as you're throwing up after a 45-minute MRI session. She says: 'Let's get you home so you can lie down.'
- When you first learn that this is a stroke, you laugh, then you cry a little bit. She laughs, and hides her tears a little and says: 'You are a crazy man.'
- The neurologist gives her the creeps and she lets you know. 'He's a pill-pushin' neuro guy.' This is true.
- She stands by you, even when the crazy part comes. She never laughs at your panic; she never questions how you feel. She listens.
- You bring her along to almost all your doctor visits because you know she listens better than you do and she's super-smart.
- You still stay up late, which is a bad habit. She reminds you, softly, not to play music all night long, that you need your rest. But she's snoozing when you creep back into bed. You sneak to her side of the bed, nice and cozy.
To celebrate, we eat dinner at Lupa, one of our old favorites. The boys are great, even though the wait for dessert is long. They bring Tiramisu with a candle. The boys dive in, and Mon says: 'Let's make sure there's not too much booze in there.'
On the way to school, Dec says: "What's it like being a grown-up?" I say: "Well, it's great when you have kids like you around." He says: "Yes. I know that."
Mon, Cortney and I head to scrap - an artist junk re-use center. It's cheap stuff that no one really wants. Some of it is strange (film reels on moving continents) and some very practical (a box full of in refills). I get some Bob Wills vinyl. The place bothers me a bit, but not much more than it would the 'old me.' They're blasting Velvet Underground tunes, which is great.
What goes on might be my new theme song. Perhaps as part of the Charfunkles release this year?
what goes on in your mind
i think that i am falling down
what goes on in your mind
i think that i am upside-down
baby be good
do what you should
you know it'll work alright
I think of a conversation I had with Den and Meme about the boys. We were at Pirate Cat Radio, enjoying the maple bacon latte. The beverage didn't change Den or Meme's life, unfortunately. But that latte changes my life every time I drink it. I was talking with Meme and Den about how lucky I was to have a great family - Mon, Dec and Dash. The boys brought me out of the depths of worry many times. It's easy to obsess about things, but it's a lot easier and more fun to play baseball in the backyard. I learned that lesson over and over again over the past few weeks.
I don't want this to be some sappy blog about how lucky I am, but there is definitely some truth to it. I'm a big fan of the TV show Dexter. Without getting too much into the plot, the character is hiding behind the facade of a great family life, in the burbs, great kids, etc. He says he'll 'do anything to protect his family.' His dad says: 'Dexter. You don't protect your family; they protect you.' Big realization.
What goes on in your mind...
Back to the every day thing. Nice. Today I meet Thomas the phlebotomist. He's a young man who claims to have done a whopping 60 blood pulls since Monday. I didn't ask whether or not this was his first week on the job. Anyway, he does a stellar job and my INR is 2.0 - exactly where Dr Teng likes me to be. So all's well in the anti-coagulation department.
Mon and I are still basking in the glory that is our new cabinet / bookcase, built by our friend Drew Carter - a damn good carpenter. Plus, it's cool being a carpenter because you can say 'I do the same thing Jesus did.' People don't mess with that. Are you going to be late on a payment to a dude in Jesus' union? Good luck.
But the project was my baby, and now we simply bask in the greatness of the front room. The boys love how the drawers shut automatically, and they're already so used to the new room. Dec says: "I like how you organized the toys, Dad. Good job!" I'm so glad Mom and Den got to see this room. Mon says: 'It seems so... grown-up.'
I'm reading Restak's Poe's Heart and the Mountain Climber. Good book on anxiety and fear but Restak is not as organized as Damsio is. Still, he's more practical. I'll post notes when I'm finished.
October 26th to November 4th --
The longest I have gone without a blog entry! This reminds me of a paper I wrote in college that got smaller with each successive section. My professor called it 'the incredible shrinking thesis!'
Doctor notes are updated. Miranda and Ivry offer some interesting points.
The big news over the past week-end is Den and Meme coming to visit. We have a great week-end. It's great to see my mom. I get the same feeling as when Ed and Grant came by. I like having them around and I wonder 'will I be this strong when they leave?' Den and I walk Dec to school. A man answers his mobile phone during the pledge of allegiance. Den and I shake our heads. Mom is such a confidence builder. She says: 'You attitude is so great. You're just powering through this thing.' It feels great to know my mom likes what she sees. I hide some stuff - I don't tell them when things feel a little upside-down. But that's part of the test too. Again, half of recovery is letting go without losing. We take the elevator to the top of the D Young museum (it's free!). I do fine (much better than the last time up there with Ed). But mid-way through, I turn from the huge satellite map up there and get the swoons. Den and Meme hold my arms and we walk around. I feel a bit like an old man, but I'm grateful. After a minute or so, I don't even need them holding me. But I don't tell them. We walk around the floor, the three of us, looking across Golden Gate Park and the city. Charles and Doreen come for dinner and we tell some old family stories. Den tells the legendary 'end of the travel-all' story that has us all laughing with tears. It feels great to laugh with Charles, Den and Meme. All this, while eating lobsters! Sunday we have a big party for Mon, as her birthday is coming up! I do fine with all the people here, and even play some guitar for my nephew Teddy - who seems to love music. Over the course of the week-end, talking with family, I catch myself thinking: 'I'm going to actually survive this thing. I'm going to get back to thinking about regular stuff. There's going to be a day when the numbness in my cheek feels normal. I have a future.'
My visit with Miranda is... interesting. There's so much he doesn't know about this subtle things that still bother me. Why is my right arm achy all the time? What's this numbness in my right cheek? Are my eyes tired, do I need bi-focals, or is this something else to do with the stroke? He simply doesn't know. Cerebellar strokes are rare. The only guy who really answers my questions directly is Rich Ivry. In fact, there are parts of the Cerebellum involved in right-arm movement and visual orientation. Today I sit in a booth and work in a virtual world. I have to match up these spheres, using robotic arms that activate the visual interface. It's pretty fascinating. When I get the spheres lined up just right, they explode. It's like I'm Luke Skywalker destroying the Death Star! Yeah! He tells me my score is 'off the charts.' Again, Rich has a knack for making me feel great about my current condition, while also scaring the bah-jeeeeesus out of me for what could have happened (or what could still happen). I'm not going to write about what other cerebellar stroke survivors deal with, it frightens me too much. But the sessions with him and Jordan (his post-doc) are always very informative. He knows exactly what part of the cerebellum my stroke hit and the areas responsible. I can't believe these people pay me 25 bucks an hour. But they do! Go Luke Skywalker!
Chris A invites me to his ACG meeting. The meeting just happens to be on the 52nd floor of 555 California! I leave my stomach on the floor of the express elevator, but arrive unhurt (but late). The speaker, Alvaro Fernandez of SharpBrains, walks through some cognitive tests I have taken as part of my over-all review. He makes a key point in keeping our brains fit: there is a big difference between 'activity' and 'exercise.' Activity is what you do. Exercise is how you train and improve your brain. It's how we push ourselves and 'fire those new neurons.' I vow to:
- learn another language
- pursue some continued education (music)
- practice meditation - those Buddhists appear to be onto something
- read more science mags
I'll probably get 1/4 done, but lists are always good. It's good to put a list on your blog, so people ask you about it and you can make up some inspirational story about how blogging really motivated you to 'get it all done'!
And of course, Halloween. Dec is a magician - fantastic outfit. Dash is a fighter pilot. He wanted a real airplane as part of the costume, but we ran into budget issues on that one. The boys are both very into it this year. We go out with a troop of friends and hit a great neighborhood not far from here. This year, I totally space out on getting a costume. Dash says: 'Are you just going as a plain old daddy?' I say: 'Yes. That's my costume this year.' He says: 'Well, that's alright, Dad.'
October 23rd, 24th, 25th
Perhaps this blog has shifted a bit, as I recover. The wild stories used to be about the spins, headaches, Coumadin. Now I'm focused more on accepting what's wrong, and just dealing with it. Maybe strangeness is the new normal. Dr Teng and I talk Friday - now he says I should get the PFO fix! He still thinks we should wait, at least a year or so. The PFO devices used now are not specifically designed for the PFO. The surgeons use them to fix the PFO, but they're meant for ASD and other 'more serious' ailments. With my INR now hovering between 1.8 and 2.3, we're all happy in the blood department.
I realize, while talking to Teng, how alone we all are. No one can make this decision for me. Well, maybe Mon, but that'd be it. As Teng says: 'You're in the zone in science where we just don't have a 100% certain answer. So no one wants to take risks.' The surgeons all say 'I wouldn't do it' but that's because they don't want to say 'Hell Yeah!' and then have something go wrong. I'm lucky, but I'm also caught in a science vacuum. Bottom line, it's like this:
Strategy = No More Strokes.
- PFO fixes, while keeping me off Coumadin, are not a slam-dunk for stopping strokes. People with devices still get strokes to the tune of about 4%
- Coumadin is a pain and there's a small risk of hemorrhaging, and not a stroke killer 100% either. About 4% of people on Coumadin have strokes. But of course, I avoid a 'procedure.'
So the final decision still awaits our trip to Cleveland. I buy tickets Monday.
Sunday morning I sleep in (my new, bad habit). I have wild dreams where I'm riding a bike up this impossibly steep hill, constantly falling over. When I awake, no spins, but that dream must have been related to a balance thing. In the dream, the earth moves, trees bend, wild stuff. At one point, I'm hanging onto a tree growing out of the side of this hill. Strange. But again, pretty normal when I awake.
Today I play music for Dash's pre-school (Miraloma). There's a lot of ABCD, and Twinkle Twinkly and Wheels on the Bus, etc. Speed Racer is also a hot one this year. I do fine, and only have a slight incident when I try to look at the kids behind me climbing the tree. Earlier, Dec walks in Jefferson's first annual walk-a-thon and does 17 laps. I cannot belieeeeeve the tunes the DJ is spinning. He's like the close personal friend I never met. Anyway, the tunes are great, the sun is blazing... Dash does exactly zero laps. He rides on my back for one. Dec won't stop running. He loves it.
As I told my Mom once when she called, I'm going to be a great retiree.
October 21st and 22nd
Windows 7 baby! Yeah! Advantage of working at Microsoft when we release Windows 7
- People feel good about the company again
- Everyone says 'wow this looks good...'
Disadvantages of working at Microsoft:
- Your family wants free copies - LOTS of free copies.
October 19th and 20th
Does it prove anything that I can balance a pumpkin on my head? Look at Dec - no hands! The patch doesn't bug me much. I find out that if I look faraway, I can pretty much survive motion and people talking to me. So if you're chatting with me, and I keep looking over your shoulder, or far away somewhere, don't worry. I'm still listening! (Technical note: You can click on the image below to see a full view of the picture).
Gymnastics update: Any kind of forward rolling is very tough for me. Wow. I do a jump and summersault and it really throws me. I recover in a couple seconds, but it's scary. Over-all, though, the PT I'm getting continues to build confidence.
I have a very slight tremor in my right hand that comes and goes. This is a bit worrisome, but doesn't affect my ability to play music - at least I don't think it does. My main worry for stuff like this is long-term.
I learn Puff the Magic Dragon and Dash is mesmerized by the song. He asks me to play it again and again. He likes it better than Monster Mash - which has been a huge hit. He gets very quiet when I play. 'Do you understand the story?' I ask. He shakes his head. 'Do you want to understand the story?' I ask. He whispers 'No. Play it again please Daddy.'
Like him, I'm learning to let some mysteries remain mysteries.
I updated and greatly neatened up the doctor notes. Dr Merrick's and Richard Ivry's notes are particularly relevant. Below is a paragraph I wrote while waiting for Dr Merrick.
The lion trainer knows the lion can kill him. He holds his whip and chair, making noise, dominating. The lion has the ability to crush the trainer, but he hesitates. He walks back and forth, studying the chair and the noisy whip. He weighs his odds, second guessing. The whip and chair do not master the lion. Without the tamer, they sit silent in a corner, harmless objects. Without his tools, the lion tamer is simply a man, no match for the lion. The lion tamer masters by misdirection and fear (the chair and the whip). The lion focuses on exactly what doesn't matter, and he is scared by something he could crush like a twig.
Am I focused on the whip and the chair? Am I being mastered by misdirection?
I have written before about 'recovery' and what it really means. To update my status and comment on my view, below are the stages
Stage 1 - 1-3 weeks after 'event'
The over-all shock of the event envelopes you, but your mind is actually quite calm. I remember thinking: 'Hey. I walked down the hallway without throwing up today. Awesome!' Putting one foot in front of the other and achieving the goal of walking is so monumental, so exhilarating, the process absorbs me. And improvement is pretty dramatic. The first week, I can't walk without throwing up and I can't sit up in bed without major spins. By week two, I can walk, albeit very slowly.
Progress is fast, but the feats are minimal and there are no thoughts of the future.
Stage 2 - 2nd month
This was really my panic period. There's major stuff I cannot do and I think 'When When When can I do this again?' New things happen - the spins, numbness - and this sets me off into a worry mode. Also, a truck drives by and I'm dizzy. The world is full of motion and noise.
Progress is slow and frustrating.
Stage 3 - 3rd month
Panic subsides, as I realize that not all scary things are another stroke. I also realize that, by and large, I'll be able to function. Getting back to work worries me. I can't do it, yet. The big word is 'yet' as I do believe I can do it, but still not sure. I pro-actively 'test' myself. Work on Quicken, climb the D Young Tower, take gymnastics. These things frighten me - the fear is real and so are the spins - but when I'm done I feel damn good.
Progress is slow, but my mind is clearer.
Stage 4 - life (this is a guess...)
I begin to accept what I cannot do - or at least what will be very difficult. 'Surprises' happen but I start to think through them. Since I'll be on Coumadin, there are things I cannot do. I accept this and move on.
October 12th, 13th, 14th, 15th and 16th - this post has pics of my stroke!
Strokeheads, once again I have gone a few days without posting. But I got a new music studio! I have a brand new machine (which is an absolute MONSTER). The software is loaded and the hardware installed. It took a couple days of tinkering down here in the Groove Lounge, but the new studio is fantastic. My first tune is dedicated to all my friends. In a blatant attempt to get you to listen, I have included Declan, Dashiell and a bunch of their friends. In addition to DecDash, this recording features:
- Cooper and Beckett Andersen
- Nate and Matthew Spillane
- Jack (very softly, at the beginning) and Sophia (very loudly, at the end) Burdulis
This tune is for all you who have visited, called, written, hung out, and somehow been a part of my battle with Mr Bad News. To say I could repay you would be silly; I cannot. But if you're reading this blog, you really made a difference in my life. We all get by with a little help from our friends. (Technical note: My WAV to MP3 converter software is not working, so this baby is a huge file. The advantage is that you get that full 24-bit sound and those Abbey Road keyboards I have simply shine...)
Back to blogging...
Gymnastics this week goes well. We avoid the trampoline because that thing is freaky. Did I ever do well on a trampoline? Doubtful. Dash has taken to saying 'for real life' for something that's not 'for pretend.' It also has a connotative meaning 'hey I'm not kidding' or 'for real.' I love that saying. He says: 'Dad. I threw the ball over the wall for real life.' 'Really?' I say. He says: 'Yeah. For real life!' What a great saying. This resonates loudly with me. You either live for real life or not. There's no in-between.
Wednesday I head to Berkeley. Mon and I discuss the long drive - my only real long drive in the car. As usual, I'm pretty lackadaisical about the whole thing. It can't be that bad. The drive over is uneventful, but mid-way through the Bay Bridge, I start to look at those steel girders. Is that Mr Bad News or an earthquake? Let's face it, the ride from San Francisco to Oakland on the Bay Bridge is like flying in a plane with blinders on. You know the view is there, but you can't see it. It's a tube, with lots of trucks. On this day, water drips from above. Water? How did that get there? I stay to the right lane, keeping cool. I make it to Berkeley. Jordan, the post-doc assistant to Richard Ivry, greets me in the parking garage. He says: 'Do you have your cane?' 'I don't use one,' I reply. He says: 'Really? Would you like one?' And this is why my Berkeley visit is such an eye-opener. I'm thankful. But I'm also scared silly.
We sit in an impossibly tiny 'conference room.' When people in academia say 'conference room' they mean 'a closet that has been converted to a room where three people can meet but we still kinda use it for a closet.' There are, literally, brooms in the corner. I buckle down and 'deal' with this situation, although the curving hallways, elevator rides and cramped quarters do not do well for my half-cracked cerebellum.
We get down to business. They ask me to slap my hands together, back-hand, then palm, then back-hand. I do this. They are amazed. I start to get the creeps. He tests my eyes with his finger, the old 'follow me' game. Again, he says: 'Wow. You're a-symptomatic.' This is great news - and I should keep my mouth shut but of course I don't. I say: 'Are other stroke survivors... worse?' This is the 64K question for sure. They two look at each other. The older professor thinking 'can my post-doc help here' and the post-doc thinking 'you're the old dude, come up with an answer...' Finally, Ivry says: 'In a word... yes. A lot of our studies cannot move their right arms or legs. Their balance is way off. Or they can move their hands, but to pick up a pen takes two or three times.' I gulp. Is this good or bad news? Obviously, good. But, how close was that bullet? He continues: 'Most celebellar stroke victims need a cane, most have long-term balance problems, many have language issues and hand or arm coordination issues.' I think: 'Are you f..kin' kidding me?' He adds: 'But I have seen people with half a cerebellum that do just fine.'
He draws me an interesting picture, stating that they have traced parts of the cerebellum to very specific parts of the body (right side, mostly). This is actually great news because it helps me understand something very strange that has happened to me. I get numbness in my right arm, hand and leg sometimes. It comes and goes, and some days doesn't appear at all. It never affects my fine-motor skills (fingers are always fine) but the top of my hand will go numb, or my right calf, or I'll wonder, only half-joking 'where did my right arm go?' I don't tell Mon much - she has enough to worry about - and I know it's not another stroke. Anyway, this is probably damage from my cerebellum. Since the cerebellum is not inverted (like the rest of the brain) my right-side cerebellum affects the right-side of the body. The vermis, also affected by my stroke, is slightly different.
He draws two stick figures, one inverted. They believe that damage to the cerebellum affects these different areas. Where he draws the lower stick figure is almost exactly where my stroke hit. Below is my interpretation of his drawing, along with my MRI/MRA from the day after my stroke. This explains the numbness in my right arm and leg at times.
After the discussion, I take some tests. These are different than ones I have taken before. I have to line up dots, with my right hand connected to a computer input device taped to my finger. I smoke some of the tests, but others puzzle me. Looking forward to discussing these.
Dr Ivry invites me to log onto the Berkeley web site and listen to all his lectures on podcasts. This is great! I say 'What does it take to get a masters degree around here?' He says: 'Not much.' After the drive back, I'm beat, and feeling a little woozy. These are not the spins written about before - not nearly that bad - but they're still unsettling. Is it the long drive? The tests? Is this a long-term condition I have to get used to? I go to bed worried.
Dr Ivry writes an email follow-up, saying he's happy with my recovery and using the term 'medical miracle.' Now let's get things straight. Between being called a 'medical miracle' and a 'medical tragedy,' I'll take the former any day. But the thought is unsettling.
Grant arrives Thursday morning! It's great to see him and he's very sensitive about my needing to take things slowly. We talk in the morning. He says 'It looks like you're... careful.' The word is well-chosen. With Wednesday's dizziness still fresh in my mind, Thursday I spend Thursday adjusting. Nothing happens, in particular. But I almost feel like I've taken a couple steps backward. This recovery is not the nice hockey-stick trajectory we all wanted. It's up and down and might be for a while.
Friday I meet with Dr Merrick of UCSF. He's a very well respected heart surgeon. Soft-spoken and wise, he reminds me of a turtle. This is not in a bad way. I want a turtle operating on my heart, not the fast-thinking rabbit who thinks he can get everything done in a flash. I want that slow, wise turtle 'dude' from Finding Nemo. He takes his time with me, while his German fellow (forgotten her name) nods and smiles. I'll update the complete notes in a day or so, but the gist is exactly the same as Dr Moore, with an added twist. It's like this:
Wait and see. There is new evidence to suggest that fixing the PFO (with a device or surgery) does not decrease the chances of a second stroke. Between taking thinners and getting a PFO fix, the stroke recurrence rate is about 4%. That's about 400% higher than I want it, but the good news is that we can avoid a procedure, take Coumadin, and achieve about the same results. What does this mean? Maybe there's a genetic blood defect we're not testing for. Maybe the Coumadin takers forget to take their pills one day. Maybe the clots come from an area of the body not normally examined. Maybe...
In addition to this fantastic news, Dr Merrick's office is on the 6th floor at the building I refer to as 'trou d'enfer' (hell hole). Except this time I have to walk along the edge of the building to get to the office. One of the nurses and I joke about the heights issue. She says: 'The first time I walked down that hallway, I wanted to crawl along...'
With no time to waste, I head to Dr Miranda's office for my EEG. They feed my lunch (kebabs) and a brownie. Christoper, the lab tech, asks me to sit in a lazy boy. 'It'd be great if you could sleep for a while during the test.' 'Sleep?' I say, 'I don't think so...' then I promptly stack Z's for about an hour. The La-Z-Boy takes me down for sure. When I awake, I'm still shocked I slept at all and half-think they drugged me or something. But that would be incredibly unethical. Anyway, Christopher says: 'I saw lots of interesting things happening there in your sleep.' Can't wait for that follow-up meeting!
Today Grant comes with us to swimming and Declan flat-out refuses to get in the pool. It's amazing, and a bit frustrating. I say 'He's never been like this before...' 'Sure,' says Grant, 'Sure.' It's great seeing Grant and I'm glad he stayed a couple days. I feel like I was in a rough way on Thursday morning and it's great he got to see me a little 'better.' We also watch Across the Universe together. A great movie that he recommends. It's nice talking about Lennon and McCartney and the music, trying to guess who wrote which song. The movie is fantastic - really takes me in. There's not pressure with Grant. I can say whatever I want and even admit to being tired. This is very important for me. The visit is a success because Grant and I often talk about 'big ideas' - healthcare, music, the economy. Sometimes, while talking with him, I catch myself thinking: 'Does he think I'm different? Am I doing OK here?' In some ways, this question will always bother me.
But he says something that really shocks me. Right before leaving, I walk him through the decision process and how we're in 'wait and see mode.' I walk him through what Merrick says about thinners versus procedures. He says: 'For me, that decision is easy. I would take thinners and stop skiing.' I almost fall over. 'YOU? You would STOP skiing?' Then Grant shows me how he really gets it. 'Life for me now is about being with my kids, my family. If I have to stop skiing, then I stop. I spend time with them. I watch them ski. Who cares about skiing? If you can stay alive, and be well and be with your family, then that's all you need.' All I can say is 'Wow I agree...' We talk for a while longer. We both agree Charley would get the operation done, because he's truly a ski nut.
We head to Cooper's birthday party. I drink half a beer in the afternoon. Life is good. The Fab Four is in full effect. I haven't seen Al, Adam and Chris in a while. The boys go nuts in the bounce house, and I have no spin issues. We talk about parent things. We get home and I'm exhausted. But Dash wants to play soccer and Dec has this idea of a chalk city he wants to draw in the back patio. So I don't sleep. I think of what Grant said. I'll sleep later.
October 10th and 11th - 2-month anniversary
Reading back on September 10th, I don't say much in the way of anniversary. We have officially passed the 60-day spot as far as the stroke goes. In some ways, it seems so soon. I can't believe only two months ago Mr Bad News came to town. Only 8 weeks ago, I was calling my brothers from the hospital bed, telling them I had benign inner ear verti-whatever. Now I'm popping 7.5mg of Coumadin a day and thinking about heart surgery! I think of Mon, watching me throw up outside the doctor's office, and me grabbing both sides of the hallway to walk to the bathroom (and I do mean GRAB). I think of riding in a wheel chair, not knowing where I was. I remember Dec asking me: "Can you run?" when he first saw me. I think of Dash saying: "Daddy. You had too much meetings now your head hurts." Dec's school yard doesn't bother me much anymore. I even went the Dash's school all Friday morning. At circle time, I had some rough, spots, but hung in there. Two months went by fast!
And then there's the flip side. Some stuff still bothers me. I worry about the parts of the memory and psych test that didn't go well. I walk down steep stairs and hang on tight with my left hand. My PFO is bleeding drops of blood as we speak, "just little ones" says Dr Teng, "but every heart beat." I worry sometimes about work - can I do it again? What will real stress do to me? How's my Vitamin K intake? Will Coumadin (the cure) become the biggest hassle of all? Should I stay on this drug a long time? And of course, we have to make a decision about the PFO "fix."
Lately, I simply ignore any symptom that doesn't stop me. My arm hurts from the beginner nurse who hacked my viens to test the INR - but who cares? If the stroke changes my perspective, then I just deal with the new perspective. This is why I'm thinking of getting into Zen. What does it matter if the room feels like it's upside down? Maybe it is!
And what about Monique? As I think on these past two months, I simply cannot believe Mon. Some of this stuff scares her, even when I'm joking. I try to downplay most stuff, but I get scared too. She's right there with me, either way. When I'm joking, she laughs (at least a little). When I'm worried, she listens. She amazes me. She is in my corner, a true partner. While we never truly know each other (we barely know ourselves), Mon understands the 'new me.' She knows who I am. Our friend from Miraloma, Gretchen, spoke some very wise words. She recently fought off cancer, and told Mon the first day she heard about my stroke: "Remember that this stroke happened to both of you." The stroke happened to both of us. So true! If you see Mon, give her money! Buy her clothes! Better yet, throw her big bales of yarn! I would be dead without her. Husbands sometimes say that figuratively. For me, it's literal.
We go to Nana and Papa's on Saturday and have a great time. The boys love it over there. Frankly, it's the only part of the East Bay I enjoy. The psych doctor said something interesting this week. We talked about work stress and my concern that stress would be different for me. She says: "The most stressful situations are crying children and dealing with a family." I say: "Really?" "Oh yeah!" she says, "For sure." "I disagree," I say. But we leave it at that. Even when the boys bug me, they're not really stressing me out. But today I'm impatient with the boys, and it bums me out. I'm after them about cleaning up, blah, blah blah. Stupid stuff. I think: "Is this my stroke, or is it because I watched 4 hours of Red Sox losing to the Angels to start my morning?" Probably the latter.
Sunday we also watch the Blue Angels from Grand View. This is a local's spot for watching the blue man group. Dec meets an 8-year-old girl and promptly loses all interest in the planes. His wing man, Nate, plays the role beautifully. His new friend, Ruby, gives him a penny. Dash and his friend Matthew play bad guys. I walk up and down a steep set of stairs, clinging, but not panicking. At one point, I turn to see the jets go by and get a big spin, but I steady myself by the Golden Gate bridge (not a bad point to pick). All in all, a B+ showing.
Tomorrow we get up and do it all over again. And I can't wait!
October 8th and 9th
I just found this other guy's blog on PFO and stroke. Oh man, what a snoozer! That dude needs to lighten up! Oprah? The dude has a stroke and wants to get on Oprah? What a joke! And his blog isn't funny like mine. It's boring. He also didn't have a real stroke - they're not even sure he had a stroke! He is, however, much more organized in explaining what happened. I respect that. People sometimes ask me: "So, what happened?" I say: "Read the blog." They say: "I did." I say: "Hmmm. Read it again. It's better the second time." Just for the record, I'd go on Oprah (if asked), but I would rock that show. I'd have those housewives crying and laughing at the same time. It'd be great. Maybe I should post to his site and send him a link to mine and say: "Let's arm wrestle on Oprah! PFO to PFO!" Let's get me on Oprah!
This 'raise awareness' thing is a bunch of hooey too. We need to be very careful about PFO (see sidebar). It's true that 20% of people have PFO. This means a lot of people could make a lot of money convincing a lot of people to either 1) take medication or 2) have elective surgery. A side note about elective surgery here, folks. Don't do it! People close to me (namely my brother who just visited) might resent that comment, but I say unless you're on the gurney bleeding to death, hold out for a little longer. As my brother Ed says: "It's nice not to have to have a procedure." While common, no one should have a PFO fix done or even go on thinners without first having a stroke. And make it real one for crying out loud!
I get my blood drawn today by a beginner. I'm not sure she knows which end of the needle to stick in my arm. Anyway, my arm is bleeding as I walk to the elevator. I think: "Wow. My arm feels kinda cool and what's that liquid feeling?..." Nice! I run back and get the bandage re-applied. On the street, I'm holding my right arm (ouch!) and accidently bump my left arm into a parking meter (double ouch!). I feel like a Marx Brothers version of 'Simon gets his INR checked.'
Yesterday, I finish the IQ and memory tests. I smoke the memory tests. I can tell they're surprised by what I can remember - so that feels great. That's the one where they tell you a story and ask for details right after, 1/2 hour later and an hour later. One story is about a woman who gets mugged on State Street in Boston! But the one where I have to hold two numbers, add them, get a third number and add that to the second to last number bugs me. She finishes the test and says: "Well, Simon, that was pretty average." I say: "At work, I delegate all the math stuff to... other people." It does trouble me that this test didn't go well. But we'll have to wait for the full results before panicking.
I still know 2+2=4 and am free to state that (Orwell fans rejoice). I know I have to save for retirement (a lot) and for college for the kids (a lot). I know it's better if my wife gets what she wants, so this happens most of the time. I love my kids. I love my wife. I know it's better to laugh than to cry, but crying is OK if you have to.
In other words, I'm fine.
October 5th, 6th and 7th
Stroke-heads, I'm stretching the days between posts. It's hard to make jokes when things go well. It's best to have some real tragedy in life in order to laugh. But I have already discussed that earlier.
Today I take the psych / IQ test at Miranda's office. I arrange blocks, figure out patterns with circles inside squares and answer True-False questions like: "I get really mad at my family and wish they were all dead - True or False?" I think: "Have you met my family?" My favorite one is: "All husbands cheat on their wives a little bit - True or False." I laugh at that one, and tell Mon later. She raises an eyebrow: "What answer did YOU give?" I think these tests are fun. Some of the questions are off. For example, "name the continents." Do you know that our so-called division of continents is completely arbitrary? Why is Europe separate from Asia? I read a book written by Jim Bartholomew's friend that really opened my eyes to this. Anyway, as you can tell, I get a little caught-up in the questions. This probably hurts my score, but who cares? Charles Darwin's dad almost took him out of school due to poor grades. He ended up OK. Two or three times I say: "I wish my wife were here, she'd kill this one..." The moderator laughs. No wives allowed.
Tuesday night Drew comes by the measure the bookcase for the front room. I'm feeling a bit anxious, probably due to my cold. I don't even sing a full song to the boys. Good thing I know the difference between a sinus cold and a stroke headache. Trust me folks, strokes aren't subtle. It's not the kind of thing you have to think about. You don't wonder: Am I having a stroke? It's more like: What the hell is going on? I read a book on the Beatles, then talk to Drew about the dream bookcase. Tuesday we also get flu shots with the boys. I'm feeling iffy, but decide to go anyway. Mon doesn't need me, but it's good to go together. Surprisingly, Dash gets his shot first and without problem. Dec has a freak-out moment, but eventually gets it done.
Gymnastics class brings more confidence. I'm jumping around this place like a crazy man. It's also quite a workout. No hand stands due to my cold, but otherwise a great routine. Sometimes when I have spin episode, I think back to gymnastics class. If I can survive a trampoline, I can survive this.
Monday I finalize my Cleveland Clinic visit (December 4th) and keep after my doctors generally. My only advice to those who go through this kind of 'trauma' is to take your health into your own hands. Doctors are busy and most people have stuff that's more serious than your ailment. If you want to be taken seriously, show up with a notepad and questions. There's a great ad on the TV showing this guy buying a cell phone. He asks 100's of questions about the phone, the carrier plan, the price, etc. They cut to him with his doctor at a check-up. The doc says: "Any questions?" The guy thinks for second and says: "Nope."
That ain't me. Never will be.
I have once again updated my doctor notes and plan. Check it out if you like! We lounge in the morning, building a train track that runs through a tunnel in the front room - cool stuff. We head to Aptos to see friends. Deb and Al, Cortney and Adam are there with kids in toe. No vertigo for me this time, so all's well. But when we're leaving, I say to myself: "I don't remember this hill here on the playground..." I don't remember it, because there is no hill. This troubles me, but not like before. It reminds me I need to take some Buddhism classes on reality perception. It feels like a hill, but it's not a hill. Is that Zen? So the spins are much less 'spinny' and the surprises seem more like odd ways of looking at reality, not things that scare me outright.
Since Adam and Cortney missed the surprise party at Bix, they take us to Darla's. The boys love this, and down their milk shakes pronto. We talk about housing prices, music and the art that hangs on the wall. I catch myself not thinking about not thinking about my stroke and heart.
Mon and I let the boys wake Ed up in the front room. If you stay at 1622, this is an added bonus. By the time I'm out front, Dec has already built a train under Ed's bed.
Ed and I have a nice talk about my decision-making process before he takes off. He expressed surprise that I don't have tremors. When I ask him later about this he says: "I have to be cautious what I tell you something, because you'll go research it and ask my 1,000 questions!" He continues, referring to my decision process: "This is a tough decision. But you're doing the right thing." I say: "I'm not sure. Sometimes I wish I had gone in there and told everyone to 'just fix this thing.'" Ed says he prefers patients who are involved in the decision. While I agree, the aspect that bothers me the most is how much we don't know. We don't know how the brain works (I've only read 3 brain books so far, but trust me, no one really knows). We know how the mechanics of the heart work (it's pretty simple, really). But no one knows - for sure - that the PFO caused the stroke. We know that Coumadin is good for knocking out clots, but no one knows if it'll really work for me long-term. No one even knows, for sure, that Coumadin is actually solving the problem I have. There is even some disagreement on whether or not the PFO had anything to do with the stroke. Teng insists the PFO did not cause the stroke. The clot came from somewhere else in my body. The PFO potentially greatly aided the clot's path, but it might also have had nothing to do with it.
Despite what this rant might indicate, I'm getting very used to this situation. I wrote something before that I now add to:
No one has more or less. We all have today. When you think you know something, remember that thought is merely a bunch of guesses strung together.
September 30th, October 1st and 2nd
Wednesday is 'organize Quicken' day. I pains me to write about a non-Microsoft software product. This is by no means an official endorsement, but we do use Quicken. I'm happy to report that, although we went on hiatus for quite some time, we are back in charge of our financials. At least we know how much money we've been losing on the stock market this year. I'm also very proud of all the update setups I do, and I walk Mon through some long-term planning stuff. I do obsess over this a bit, as I consider it a test. Can I do this anymore? Do I become confused when thinking of college payments in the year 2024? The answer is yes. But at least I'm no more confused than anyone else. Mon yawns her way through my Quicken explanations, but says: "This looks good." So I know I'm OK. It is tough to impress girls with technology.
Thursday we pick up Ed at the airport. Man it's great to see him! Ed, Mon and I see A Midsummer Night's Dream presented by CalShakes. Stroke-heads, this is an outside amphitheatre in Orinda - in the middle of the woods! Not only do I survive, I thrive. In cozy socks Mon knitted for me, peeking from behind wrapped blankets, I watch the show. At first I wonder if this is such a good idea. We eat dinner on picnic tables that are titled on a hill. This worries me. In addition, a team of wasps decides that the salmon burgers Ed and I ordered look mighty tasty. They descend upon us, like a Puck-lead prank. At one point, we leave our food on the table and sit a few feet away. I say: "People here think we're part of some strange religion. We must approach our food cautiously, eat a few bites and the run away! We should speak in iambic pentameter too!"
The play is fantastic, truly transporting. At times, I gaze above into the stairs, enjoying the words and fancies of a butcher's son. It's a great story - great because Shakespeare makes such fun of himself. Only truly great people can laugh at their own expense. If you can't laugh at yourself then you simply cannot laugh. That's my new rule. It's not that new, but anyway...
Friday Ed and I walk with Dec to school. Ed says: "This place is huge!" Dec is pretty proud of his school. He shows Ed his locker and kindergarten room. Unfortunately, no kick ball game, so Ed doesn't see that. Ed, Mon and I hit the de Young museum. I ride to the top of the observation tower and walk once around - about as good as it gets! It's a great view from up there and we point out what buildings we know to Ed. But I leave after about 3 minutes. When the floor moves, I make my exit.
Ed comes with me to Dr Teng's office. I'm really glad he came along. First of all, it's nice having someone with you in the doctor's office. Secondly, Ed is the closest I have to Dad. He's family and a doctor. I like my docs, but I do sometimes miss Dad and his council. When we leave Teng's office, Ed says: "That guy is really good." This makes me feel confident. It validates what I believe.
Teng, Ed and I walk through all the options. I tell Teng I'm surprised that all the surgeons and "intrusive" medical people I know (Teng, Dr Moore and Ed) are all telling me not to have surgery. The general practitioner (Dr Levy) is the only one who thinks I should! I say: "Don't you guys want to do your jobs?" They laugh. Teng makes a great point: "We always want an intrusive measure to be the patient's choice. He has to be with us 110%."
It's so cool have Teng and Ed in the same room! I also joke with them about doctors. I say: "Dr Moor was surprised to hear that I didn't have an ultra-sound on my legs to see if they could locate the source of the clot." Then I add: "Of course, you doctors are trained not to show any surprise..." Teng interrupts me: "Ed. Did you take that course? The one where we're taught not to show surprise?" Ed laughs. I say: "Look guys, if I told you both I had blood spilling from my right ear yesterday, you'd both nod, take some notes and ask questions. You wouldn't even flinch." Teng laughs: "Something like blood from the ear I think I'd register surprise..." As a follow-up from the visit, I'm going to:
- Get an ultra sound of my legs and hips
- Meet with Dr Merrick - a heart surgeon
- Move to a wait-and-see mode and stay on Coumadin - at least for a while
Ed, Dec and I head to Ocean beach. Dash stays home because "the beach is too sandy." We play soccer and Declan draws a race track. I think wearing a hat helps me in wide open places. Anyway, I do fine. The surf crashes in. We kick the ball. We head to dinner.
At dinner, I'm in the bathroom with Dash and Dec. Dec finishes washing his hands first and decides to turn the lights out. No fault of his, as I often laugh at this joke. But none of us three expects the utter blackness that descends. I cannot see a thing. I say: "Dec. Turn that light back on right now." He responds: "Dad. I can't find the switch." I fumble around, trying not to curse but cursing a little. I find the switch, and promptly get a 9-volt HELLLLLOOOOOOOO shock. "Argh!" I yell (I might have said "DAMNit"). I fumble with the door but finally get it open. I try to talk slowly. "Boys. Get out of here. Get up those stairs. Straight to the table with your mom. No fooling around." The boys obediently disappear. There's a guy waiting for the bathroom. I say: "We switched the lights out. I tried to switch them on, but got shocked." The man smiles, "I'll just wait for the other bathroom."
Back at our table, Mon says: "You should tell the waiter you got shocked. We might get some free food."
Oddly enough, this whole thing reminds me of Ed's visit. I like having him around. It's like a security blanket. Of course, Charles is already like this. But it's the doctor factor. He's family and he's a doctor. That means a lot to people in my family - I know it does. It's because we had Dad there all the time, making sure our doctors met his criteria. I know Dad would like and respect Dr Teng because Ed knows and respects Dr Teng. Dad would say: "Hey Ed. What do you think of Simon's cardio guy out there in San Francisco?" Ed would say: "He's really good. Really good." And that would be the end of it.
I wonder if my boys will think of me like I think of Dad or Ed Or Charles. Are they waiting for me to calmly find the light switch when the joke has gone too far and the room is pitch black?
Dash and I play with Legos in the morning and then it's time for gymnastics! This is my second session and it's pretty fun. A couple moments on the trampoline are tough, and I cannot do summersaults. Otherwise, this class really builds my confidence. But it wears me thin. Reading with the boys at night, I almost doze off.
- sideways jumps, ski jumps, plunges
- active stretching with legs
- 1 summersault - ONLY one
- low trampoline: stretch jumps, 1/2 turn and full turn jumps
- balance beam: plunges, walking, etc.
- trampoline: 1/2 jumps, full turn jumps, stretch jumps with "stop" (where I have to land and freeze)
- hand stand with feet on wall - this was wild but do-able
- end with killer Pilates stretching
I also drive downtown! I hit Market Street like Michael Douglas in Streets of SF. My hair is also approaching that 70's Buffon style, so things match perfectly. Pedestrians in this town are crazy. These people wouldn't last 10 minutes in New York. I think: If these folks knew my cognitive condition, they wouldn't be jumping in front of my car as the light turns green...
I pick up Dec and play with the boys in the backyard. This worries me slightly because the last time I played with them I had the massive migraine. But today, nothing. So that's how it works sometimes.
It's nice writing about a day where nothing happens. The new me is different, a slower walker.
I often think of this guy I met in Michigan back when I was up there a lot, working on the pen software project. He was a union guy, an electrician. Very cool guy. He used to laugh at the software development team because we'd be working 18 hour days, no sleep. We loved our work, but it was obvious we were pushing too hard. He said to me: "Man. You guys have no idea what life is." I said: "Do you know what life is?" He said: "I learned what life is the day my doctor told me I was going to die."
He had survived lymphoma cancer. The survival rate on his advanced stage was 8%, maybe... Every doctor he met told him he had 2-6 months. But that dude survived. He told me his story and laughed so hard, it made me laugh - but it scared me too. He said: "Man. Every day since I finally got out of the hospital is extra. Every single day is one more extra for me. I walk around thinking 'I shouldn't even be here, so what the f..k?' That's what life is, man. The trick is to figure that out without having to get cancer first." He said that and laughed. We both laughed. I was lucky to meet that guy, but cannot remember his name. I hope he's well. If I met him I'd say: "Hey man. I KNOW what you're talking about. I learned it the hard way, but I learned it just the same. I'm enjoying my 'extras' immensely."
Walking to school, Dec says: "Why do you go to the doctor's so much?" It's the first time he has mentioned anything related to the stroke since the first day he saw me and asked: "Dad? Can you run?" I stammer a bit. "I fell better," trying to show some confidence. "I had something happen to my head and my heart and the doctors need to look at it. But I feel much better now." He says: "If you're tired, you don't have to pick me up from school. But if you feel like it, it'd be nice."
A kid practices drums in his garage at the corner of 22nd avenue and Judah. We stop every day and watch. Dec says: "I want to take drum lessons. Spanish lessons and drum lessons." Man. That kid can drum!
Mon and I watch Jill Bolte Taylor's Ted presentation. If you have 18 minutes, check it out. If you have a few hours, check out her book. But if you're sick of strokes, panic attacks and PFO's (like me), you should definitely check out Ken Robinson's TED presentation. This is a great one, folks. It's so good, I almost want to quit blogging.
September 25th, 26th, 27th
It's Rip Van Blogger Head here! I haven't been sleeping these past three days, I've been turning 40. Lots to write about!
The big day, September 25th, starts with presents. Dec says: "Your only job today is to open presents. That's it!" There were 40 presents in total. That's a nice bag o' birthday fun. Mon and I drop Dec and school and Dash at Miraloma and head to Pirate Cat Radio. I get their signature "pig latte" which has maple syrup and bacon. I do fine at the cafe, listening to the radio host blab on about euthanasia and kids. A jazz trio shows up, but we have to hit the library book sale. The warehouse worries me, but if I hang onto the shopping cart I can make it through alright. That's a funny image: me, walking with a shopping cart full of books through a warehouse. The more weight I put in the cart, the better I feel. Mon and I buy tons of books we don't need, which is fun.
But the big event on Friday has to be dinner. Mon tells me we're headed to Bix. I'm not sure if the bar is named for Bix Beiderbecke, but the vibe is all Jazz. We walk in and I'm simply not sure. It's pretty crowded and noisy. The hostess leads us into the main room and I notice in the corner of my eye a group sitting at a table. I think: "Man. They have the best table here." And it's our friends Deb and Al and Sara and Chris! Surprise! This is exactly what I need (no sarcasm here). The place is a bit scary for me, but these guys make it all warm and fuzzy. They have cool presents for me, but Sara thought it would be hilarious to give me the gifts in an Apple bag. This stings my fingers as I touch it, but I survive.
Dinner is not without challenges. After twenty minutes or so, I'm so certain the floor is moving, I consider asking anyone if they feel it. I look around. Everyone is chatting away. I simply cannot believe that the floor isn't shifting back and forth back and forth. I force myself to ignore it, but it never goes away. The reflection on the glass mirror behind the table throws me off, too. It's as if anything that's not straight lines mixes me up. After about 30 minutes this stuff fades. It comes back now and again, but over-all, I can listen, talk, focus on the conversations. I ask Mon later: "I felt wobbly in the first 30 minutes, how do you think it went?" She says: "Wobbly. In the first 30 minutes." We have a night cap with Al and Deb at our place. I show Deb Sonos, but she remains unimpressed. Why am I the only person in America who loves Sonos??
It's a great night. The more things I do that are 'normal' but feel challenging to me the better things go. I want to go back to Bix and see if my first 30 minutes would be better. It's still such a mystery why certain environments set me off. It's comforting, in a way, because things are more predictable now. I can tell where, how and why an episode will come on. I can usually work through it. Of course, I'm worried about the future - will I always be this way? Will these episodes stop?
Saturday we head to swimming class. Dash decides, quite emphatically, that he does not like organized sports. He takes one swimming lesson and then states: "I took the class ONE TIME and ONE TIME only." He does the same with soccer. He loves it, but explains to us quite clearly that he only wants one lesson. Mon and I aren't really into pushing him. If he doesn't want to go, he doesn't have to. Aren't we all a bit like that? I love the way he explains things to us, very slowly. "I took the class, that's all I need."
Saturday is Sunset Fair day. We head to the rec center. Dec goes nuts in the bouncy house. I can't even watch him, too much. My motion processing is definitely challenged. We have a great time, petting a snake and iguana. Dec likes the Judo show; Dash and I split a pizza. We see friends. I think: "Wow. I'm outside in a big crowd and I'm loving the sunshine."
Sunday brings another challenge. Muni. I'm writing a song about Muni that is very complimentary - which means it's a bold face lie. Why do Muni drivers slam on the brakes? Can't they stop normally like the rest of us? Anyway, Dec has had an idea for weeks now that we should take Muni to the Ferry Building and watch the ferries. We call this "Dec's Adventure Day" and it is awesome! From a stroke-recovery standpoint, I do OK, not great. When Muni slams to a stop inside the tunnel I switch to 'survival mode.' Man, that sets me off. It's interesting to note (again) that the motion is not the issue. It's the stopping that gets me. It's the anticipation of motion that sets me off. Walking out of Muni at Embarcadero, the long stairway makes me swoon. I hold Dashi's hand - who's comforting whom?
We watch ferries, eat food, walk around. I talk to an old man playing clarinet on the pier. I say: "My boys don't know Charlie Parker yet." He says: "Man. I'm glad you recognized that." I tell Dash: "You should always talk to old musicians." Then I think: Should I encourage my boy to talk to strangers? The blimp sails over-head. Dash chases pigeons.
Over the week-end, I buy myself a very expensive PC. It's a 'silent' PC which means it's designed to make no noise. This is ideal for recording music. Other than that (and some music software) my 40-year-old-now-it's-time-to-drive-a-sports-car-and-get-rid-of-the-grey-hairs syndrome is pretty light. I'm happy to be alive. Really, really happy. I'm also not a big 'life reflector' kind of person. I'm a forward momentum kind of guy. But I will attempt a brief summary.
- Not many. I do think I should have tried my hand at being a musician. This decision will always haunt me. But it's better to be haunted and have money than it is to be haunted and not have money.
Best Days EVER
- Marrying Mon. I think choosing the right person is more important than anything. We all must decide if we believe in God, or have kids, all the 'big stuff.' But if you marry the wrong person, man, all that other stuff is impossible. At least with Mon, I know I'm set. You should always marry someone smarter than you.
- Watching Dec hit the ball over the roof of our house. I can see his face and his eyes - that realization: "I CAN do it. I CAN do anything I set my mind to."
- Hugging Dash. He's still in the young age and I love it when my kids crawl all over me. Dash grabs a football, charges into me and says: "Daddy I'm TACKin you!"
- Meeting Alan Dawson at the The Willow Jazz Club. I used to work for Brian Walkley at the Willow. One night, I chatted with Alan D about being a musician. I said: "When did you decide you were a musician?" He said: "I never decided. You simply are a musician. Everything else you do is just what you do."
- Stealing a row boat and riding down the Seine with my friends Mike D and Dave A. It was so quiet on the water, and all of Paris shone above us. It felt like being in the bottom of a gold-flaked snow shaker. Silent. Golden. All this skidded to a stop when a fireman aboard one of the barges saw us and said: "Putain de merde! Arretez!"
- The Frick Museum in New York City, in the fountain room with Mon, daydreaming.
Blogging live from Miranda's office. They're working on sending my stuff to the Cleveland Clinic. Miranda is worried about my migraine when I tell him. This worries me, of course. We discuss it. I'm getting a brain wave (Electroencephalography) done in a couple weeks. He's not worried about another stroke, more worried about the migraines themselves. I just want to get to a point where I'm not worried about my head, brain, mind, etc.
Anyway, I make the psych doctors laugh. She asks how many kids in my immediate family. I say: "My parents tried 10 times before they got it right." She leans over to her assistant and says: "Note that humor is intact." I say: "Maybe too intact?" I feel confident when I come to Miranda's office now, like I'm a fighter headed to the ring and I know I'm going to crush some heads. But I don't get too cocky. They plan on running me through some "pretty tough" psyche tests in a couple weeks.
Since Dash wakes me up three times during the night, we both sleep in. He and I work on a puzzle together and build a Thomas train track. Good times in the front room!
Reading books in bed, we talk about family. We read Big Brother, Little Brother. I say: "I didn't have a brother close to my age growing up. Isn't it cool you guys have each other?" No response there, but Dec says: "How many brothers and sisters did you have?" I say: "I had 4 brothers and 6 sisters!" Dec says: "How did your parents take care of so many kids!?!"
When in trouble, keep busy. Keep smilin'. In a crass attempt to increase blog traffic, I'm including recordings of Declan and Dashiell. We're playing Route 66 together. Mon joins us for a cameo, so check it out!
News Hour - Dash, Dec and Mom (cameo)
As I get better, is this blog less funny? Does the old formula hold true:
Tragedy + Time = Comedy
Or should I amend it:
Cerebellar Stroke + A Little Time (but not too much) = Solid Blog Writing
At the suggestion of my neurologist (Miranda), I take a gymnastics class. Dash and Mon come with me. They sit up in the stands and wave to me as I jump along a trampoline and roll along the matted floor. I'm surprised at what I can do, but some things definitely worry me. It's after each activity that I feel the spins a bit, but not too much. All in all, my confidence is sky high. Maggie, my instructor, is great. Everything I do, she says: "Great. Looking great." But I can tell the difference between my left and right hand. I can feel the wobbles. The exercises are:
- Warm up: lunge steps (backwards, forwards), skips, ski jumps, hockey skating
- Long trampoline: stretch jumps, ski jumps, skips, jump turns (clockwise and counter-clockwise)
- Floor: Pilates, leg circles (clockwise, counter-clockwise), stretch with a wheel,
Dash says: "Dad, can I always come see your nymnastics?" Dash has no clue why I'm around so much. He seems to love it, and I do too. We read books. We go for walks. After nymnastics, he asks for a shakey milk and he gets one, because life is short. I eat lunch with Dash and Mon, pick up Dec, and have a very long nap.
The fatigue still worries me. I can't function without my 2.5 hour nap in the middle of the day. When will this leave me? Serotonin levels are low in the brain for at least 90 days after any "event." But my fatigue is almost shocking sometimes. I'm going to keep active, and keep napping.
Dec wakes me up at 5pm. "Sorry man," I say, "I'm not playing with you much after school." He nods, smiles. We talk about having a play date with Luca because Luca rides the train - not once - but TWICE every day. He gets to ride Muni to and from school. This amazes Declan. It is jaw-dropping stuff. I can almost see him think: "Should we move, so I can ride the train too?" I say: "Would you ever get tired of riding the train, if you had to ride it twice each day?" "Nah," he says, "I don't even get tired of hopper cars."
Tragedy + Time = Hopper Cars
September 20th and 21st
Notes from the Dr Moore visit are updated and are probably more understandable now. Dr Moor puts in PFO devices for a living and his recommendation to me is:
- Stay on thinners for the next 3-5 years. There are a lot of studies going on right now that will provide very specific data related to my situation. While they are 99% sure it's the PFO, they are not 99.99% sure. I might have a congenital defect we simply don't test for yet. Why not wait for new devices, new blood-testing methods and stay on Coumadin for a while? It's the "stop whining put on that helmet and go skiing (but watch out for trees, seriously)" prognosis. As Dr Moore says: "You should always wear a helmet skiing. With Coumadin, if you hit a tree you might be in trouble. But the key is: avoid the tree." He says this with a straight face. No Zen. No joke.
I have also updated the Doctor Notes and Plan for your perusal. You can see what all the doctors say, and even read my favorite poem. I also have notes from reading Looking for Spinoza. Once again, this blog is saving you time! No need to read books, just come on over to "60 to 90."
Sunday I watch the various baseball games with Charles and Al. It's nice not talking about anything except baseball, and maybe some stroke stuff thrown in there. Mon and the boys head to the beach, but I stay home with Charles watching baseball.
Monday morning I discover Kickin Grass. A great band. Life is not a Guarantee is a good tune apropos my situation. Sparrow is also great.
That which does not kill us, makes us stronger. But that which kills us, definitely kills us. I wake today in the Palace Hotel in San Francisco. I feel calm, strangely calm. Somehow, my right-brain has taken over and everything is nice and even. I have never liked the term "at one with the universe." I like the universe well enough. But I like me too. And I want these two things to remain separate for a long while. Of course, technically, I'm part of the universe already, but that confuses thing. There's me. There's the universe. The two are separate. Let's keep it that way. Why would anyone want to be at one with the universe? What is enlightenment? Sometimes I think my panic episodes are actually heightened enlightenment, where I see everything clearly for exactly what it is. It's terrifying. If I can learn to not fear this, then, I fear nothing. I will essentially "glue" the left-brain (ego, me) with the right brain (continuity, universe). This is why I'm suddenly interested in Buddhism and reality perception. What's the difference between seeing life for exactly what it is, and being at one with the universe? Are the two the same? Parts of the same? Contradictory?
When meeting with Dr. Moore earlier, he's walking me through how they're going to put this device in my heart to fix the hole. He says: "You want this device to last, maybe... 50 or 60 years." I say: "I like 60 better than 50." He says: "OK. We'll use 60 then..." You bet we'll use 60! How about 70 while we're at it, smart guy? He's the kind of guy you want operating on your heart, not hosting your kid's birthday party.
We walk to the Ferry Building and shop around the Farmer's Market. When I look at the water, things spin a bit, but otherwise I do fine in the crowd. We buy the boys some Amos Goldbaum MUNI t-shirts (and I buy a sweat shirt). That kid is fantastic. I'm going to lay down some cash for his artwork for sure.
Back home, we now get YouTube directly onto the new TV, so we can watch all the Lego Train videos upstairs. The boys love this. I'm not sure Mon does, but she puts up with 20 minutes or so. We all talk about cool Lego trains we want and how Santa sure will be busy this year. We play football outside. I play a bit more conservatively because I'm still in post-migraine worry mode. Dashi is phenomenal. He has no fear of Declan whatsoever. He takes him down, no problem, knowing just how to use his weight to carry Dec over. It's a little scary to watch. Dec just laughs it off (he's a good big brother), but once in a while he lets Dash have it - just to make sure the little one knows he's still the little one. In the end, there are some tears (I forget why) and we cancel the nonsensical, three-team "Donovan" football. Dash and I lay on our backs and watch the fog roll over our roof. An ostrich. An elephant. A crocodile. Dec busily hoists his bike onto the top of the tree house uncle Denny built. (How? I have no idea.) I guess Dash is a cloud-watcher and Dec is a doer. On this day, that's the way they line up.
Blogging live from Dr. Moore's office! I decide to call this place "Trou d'enfer" which is French for "hell hole." It's a nice place, and I certainly mean no ill will. But the kids in the waiting room and the angled walls are too much. Compared to Wednesday, I do fine. But why do people think kids like angled walls? Anyway, Moore is a nice guy. Very serious. No humor here. I do crack him up once or twice, but it takes all my Jedi-humor effort. If these were Make me Laugh (I found Frank Zappa on Make Me Laugh, because that's how I roll), I'd walk home with a voucher for Sears and nothing more (get it? Moore? More?). Anyway...
I'm here tapping away at my computer. He seems a little put-off that I brought my own TEE program and can show him the TEE test from my laptop. He asks "Where do you work?" He wants to leave the room and look at the TEE by himself. Well, OK then, Dr. Wanna-have-a-time-out. He leaves, comes back. All business. You can read the notes if you like (special thanks to Al and Deb for the questions).
Today is a good day. It's warm in the city and it's our 10th wedding anniversary. The sun shines. The waves roll in. Dash and Dec are in full Seminole regalia - thanks to Tara and Chris. It is a bit strange explaining to friends why our children are such big FSU fans, but hey, the uniforms look great!
Today goes well until wham! I get an optic migraine at about 3pm. The boys and I are tossing the football around in the backyard, and suddenly I can't see their faces. Time to lie down! This is scary. I'm thinking: "This is not a stroke, but maybe this swimming fish thing will just stay here." The aura ends in about 30 minutes, but my head feels awful, stretched out. I thought the advantage of Coumadin would be no more migraines. Hélas mes amis, this is not the case. I take a couple warm towels from Mon and read The Naked Brain and I'm out.
September 15th and 16th
Sometimes I think this blog is too positive, other times, too negative. These two days are rough, very rough. Recovery is not a hockey stick trajectory, it's more like a road that gets less bumpy but can still pack a punch.
Today Mon and I head to Dr. Moore's office. UCSF (the 7th best hospital in the nation) has a parking garage that would make a trapeze artist dizzy. I can't take it. I have to let Mon park the car while I find my way to the elevators. The crammed elevator ride is no fun for me. We're packed in there, and then some huge woman gets on - to my left side. I'm spinning, panicking, trying to find something to read backwards.
The waiting room is filled with kids. The room opens onto a pristine foggy view of the city. The room has slanted walls and multi-colored murals. This is tough on me. I can't believe people come to work here every day. I'm amazed I survived the elevator ride. I fill out some insurance forms. The woman has a tough time finding my name on the appointment list. We play the "Is it D-O-N-O-V-A-N or D-O-N-A-V-A-N?" game. A game I find Californians love to play.
Pedantic aside: No one in Boston ever asks me how to spell my name. No one. I tell my friend Adam that I considered myself a Californian. A native San Franciscan, he squints at me, "I'm not sure about that one," he says.
But here's the kicker, folks:
We are at Dr. Moore's office on the wrong day! My appointment is Friday, not today. They hunt down Dr. Moore for me, but he's busy in a day-long procedure. I had put the wrong date in my calendar! No problem. I have to get out of here anyway. I gulp and face the elevator again, wondering: "Can I survive this one? Can I fit into this space?" I hold Mon's arm: "I'm alright," I say. A doctor in the elevator looks at me, and I can tell he's trying to diagnose. What does he have?
Driving back home, questions run through my mind. Why did this set me off? Will I always have to "practice" going somewhere new? If I'm this worried about an elevator ride, how can I survive a plane ride without a bucket full of Xanax? All questions that need answering. The interesting note about these episodes is that they bring on what I would call "hyper-memory." I can remember (or at least I think I can) every detail of that room. I can remember the color of the flowers on the admin's shirt (alternating blue and red roses), or the motion of the hand of the guy in the wheel chair next to me (a clock-wise flinch).
Earlier, walking back from dropping Dec at Kindergarten, I stop by Walgreens. The aisles bring on my hyper-reality. They're so tall! They reach to the sky! Wait! That doesn't make sense! Am I as tall as these aisles? Is my head going to hit the ceiling in here? Should I crouch down? I buy some tissues. At the front, two cashiers argue about the pricing on my box of tissues.
- Is this 109 or 99? I thought we had a special.
- Not 99! 109 for sure.
- You sure?
- I need a price check.
She evaporates without looking at me, gone to search for 10 cents. I'm thinking, while the room spins, 10 cents is a lot of money to someone, perhaps someone who lived in the latter part of the 19th century. And do I look like a guy who needs an extra dime? Maybe my angst expression gives the wrong impression. Instead of "please hurry up before my brain explodes" it sends the message "10 cents is really what I need right now." In any case, I wait. As it turns out, I do not save 10 cents.
Later, on the way home, Dec says: "Dad. I'm certain that Mom said we are getting a fish. She's allergic to cats and we can't have a dog, so it's a fish. For sure. But you have to be careful not to feed the fish too much..." I start thinking a fish tank in that new counter in the front room might look nice.
Special Announcement. My friend Al provided an excellent explanation of the difference between Squirrels and Chipmunks. For this interested, check it out. Al and Deb have helped me a lot with Coumadin, PFO, LED TV and TV Controller conversations. Now we can add small animals to the list!
I spend part of the morning on the phone with Cleveland Clinic and a gymnastics school down the street. I also spend time re-learning one of my favorite poems, Terence this is stupid stuff, but AE Houseman. This is a great poem. It has several different levels, and teaches us a valuable life lesson. It also mentions beer quite a bit!
Today I also drive the car! We're Prius-lovin', tree-huggin' right-brained fools out here in SF, but it's still a car. Some guy actually honks at me because he thinks I'm closing in on his lane. Truth be told, I'm munching on a piece of Giorgio's pizza while driving. Probably not smart, but how can you resist that huge slice of deliciousness staring at you on the passenger seat? I drive up to Geary to get the new Comcast cable box and then head to do some anniversary shopping (don't tell Mon, but this year's gift is pretty cool).
I do fine driving, but some things bother me. I can't stand stopping at red lights. For some reason, the lack of motion really gets to me. I read signs backwards, do some math in my head. Otherwise, I take it real easy. My trip starts with the Heavenly States but I quickly change to Bach. I have to work on my lack of motion after motion. Maybe gymnastics will help.
A great Sunday. We take the boys to Aptos with Cortney and Sara. I get out of the car and feel 20 feet tall. The handle to the car door seems to be very, very far away. Miranda tells me about this Buddhist camp in Colorado where they have reality perception tests. These tests are designed to show that our perception of reality is just that, a perception. In the new me, my brain might tell my mind something that doesn't logically make sense. At one point, walking down the street, I I walk around the block several times, leaving Mon and the boys with friends. I'm fine, not panicking, but definitely... intrigued. Some of the twists and turns in the neighborhood by Aptos throw me, but otherwise, I'm just walking.
I read signs backwards and do math in my head. The vertigo passes after a while. That's when I get to thinking of letting go. Fear has three options:
- Conquer the fear. This is unlikely and can often cause frustration.
- Manage the fear, live with the fear. This is better, but might pitch You vs. The Fear in a life-long battle.
- Let go of the fear. This is tough, but the most rewarding. I'm starting to do this.
Potential causes for vertigo at Aptos:
- Before arriving at the park, I was talking on the mobile phone while riding in the car.
- I didn't really "prep" for Aptos. We sort of ran out.
- It was morning, time I am used to getting to myself.
Reading a NY Times article about Wagner joining the Red Sox and the chance that he would upset Papelbon's ego bings an interesting quote from Wagner. This guy has come back from surgery (Tommy John) and shouldn't even be pitching until next year. Yet he's doing an amazing job.
Wagner has been a star closer all his career. He now has to play on a team where someone else does this. He simply cannot throw like he used to. He now has to change for "super-star closer" to "setup man." No doubt about it. This is tough. He's also getting older and knows it. His quote:
“Try learning to pitch at 38 years old,” said Wagner, sticking a wad of chewing tobacco in his lip. “Ain’t no fun.”
I just laugh and laugh at that quote. It makes me think of my own situation. I can analyze, dissect, read books, search the web, talk to doctors, [insert task here], but the bottom line is that this ain't no fun. No need to complain about it. It is what it is. I can sit around and feel sorry for myself, or I can simply go do my job. So what if things feel like they're upside-down (literally)?
Like Wagner, I plan to keep pitching.
At Dec's school, all the students say the pledge of allegiance together every morning. We gather in the concrete play yard, lined up in our class lines. The principal (Mr. Tam) recites the pledge, while a kid holds the flag. Mr. Tam says: "Students, today is September 11th. Today we remember those who are dear to us. That's why the flag is at half-mast." It's a crisp morning, and a clear blue sky.
As many of you know, I was very close to the World Trade Center on September 11th. Our office was three blocks away. After the events, Mon suggested I write everything down. Below is my journal entry. I copied word-for-word, changing only abbreviations and some some sentence structure. There are a couple swear words - I apologize. Since this blog is about recovery, maybe this helps?
Journal Entry - 09/16/2001
Sunday. Sunny. I'm sitting in our comfortable chair at 300 Mercer Street, finally with time and desire to write about the week's events. I used to write in my journal almost every day when I lived in Paris; now that desire is so foreign to me. It's almost like crawling again. But the sound of the 2nd plane hitting triggered something in me. I'm having those 'let's-live-life-to-the-fullest' moments, been having them all week. But I digress... I woke tired Tuesday. Work has been tough, and solutions scarce. With this tech bubble everyone loves to describe not just how burst the bubble is, but to what exact degree. They also like to describe where, how and how much they knew it was all going wrong. These are the same pundits who sang tech's praises only months before. But as bad Dad always said: After the war, no one was a bad guy. In a self-righteous nutshell, that's what I've been dealing with and what I awake to on Tuesday AM. Mon actually had to push me out of bed. I dressed, put on a nice shirt because I had to interview a sales guy from Plural - a competitor - that morning. I caught the N/R at probably 8:15am. I read my Harvard Biz Review on some management technique. Back up. Before getting on the subway, I talked to Chris Paradise on the mobile. I stood at 8th and Broadway. our VP of Sales was up to no good. Chris wanted to hire the wrong guy. I think I calmed Chris down. Strange, all those thoughts that filled my head seem so silly now. But are they silly? Isn't that what life is? Like a C Parker riff, it flies and floats, screams, is beautiful and is gone.
Before Courtland Street, the subway stopped. This happens often enough. But the length of this stop was noticeable. I looked up from my HBR article, thinking "I'll miss that call..." (some meeting I had). We stopped at Courtland and just now I'm thinking that those people who got off, some went to their death. But possibly not, because we were on the street level (or just below) but certainly the man in the ticket booth. In any case, someone got buried alive. As soon as I Walked up the Rector Station Exit, something didn't jive. It smelled like gun powder, or brunt paper. The way I exit the subway, I have my back to the World Trade Center (WTC). Had I turned, I would have seen the smoke from the first plane. But I didn't turn. The only specific thing I can say about the crowd was that it was business as usual. The smell as there. I thought: "Maybe street work. Maybe." My head ached. I had work to do. I cut through Exchange Place the alley that runs between Trinity Place to Broadway. That's how I get to 50 Broadway every morning. When I hit Broadway, things were in the Twilight Zone. But it was still business as usual. I saw some crowds by Trinity pointing up, but I'm not a rubber-necker, so I continued down Broadway to our office. Some people ran by, strange but no big deal.
Chris P was at the door. "A plane hit the World Trade Center," he said, "Let's go check it out." The events from here run together like wild horses in some corral (my mind). I'm not a rubber-necker, sites of crowds peering at disaster make me think of public hangings - are you watching because you're glad, sad, lucky or all of the above? "A plane?" I said, "What kind of plane?" "No idea," he said, "I've heard it's a commercial jet." I said something like "No way." I pictured a Cessna, some drunk tourist out of control. We walked from 50 Broadway - right by the bull - to Liberty and Broadway. As we walked, the slope of life pitched. I knew this was big. I knew it, but somehow was still above it, in control. Objects: Paper. Paper. Dust. Paper. Not nearly as bad as later, and not even noticeable. Had you come up from the subway, you might have thought that some business had a party on the street and NYC sanitation didn't clean properly. Chris picked up a piece of paper. It read: "Marsh McClendon - Technology Budget for FY2001". We also picked up addressed envelopes, some letters. He said: "This stuff can't be from the WTC." We looked up. The paper floated above, 100's of feet. It looked like super-sized confetti. Against the clear blue sky it fluttered. It looked like a school of fish, swimming up there. At Broadway and Rector Street we stopped. Above Trinity Church the towers rose, two square swords. The North Tower, the one farther from us, was on fire. "This is bad," I said, "Those flames are, maybe, 40 feet high." We were on the opposite side of where the first plane hit. Had we seen the gaping hole in the other side, we probably would have started running. Crowds gathered. But most people still couldn't be bothered. They were on their way to work. Many, like me, had only recently come up from the subway and probably hadn't heard the first plane hit.
"Let's try to get by the old office," said Chris [our old office was 150 Broadway, closer to the Towers]. We walked further uptown. Now the crowd was thicker. Broadway had become a pedestrian thoroughfare. Co cars could fit, or maybe they squeezed by. At Broadway and Cedar Street we stopped again. You could really see the flames from here and the edge of what must have been the gaping hole left from the first plane. In a word, the building looked "cracked."
Now things speed up.
I was nearby, I was "there" when the 2nd plane hit, but I didn't see it. The sound - probably the jet engine? - was so intense. That was before the explosion - or maybe part of it. The collision and explosion was long, it had many subtle parts to it. I turned and ran before I could see the burst of flames from the building. Now was all panic. People forgot jobs and calls, money and bosses. I helped a trader who had fallen. "Shit thanks!" he said. The chances of getting trampled were real, probably not huge, but real. The many voices screaming. The paper. The dust. I held onto my computer bag because my wallet was inside. If I died, I wanted to be ID'd. Crazy. But as I ran, that entire thought process when through my head. The collision and explosion had a beginning, it was a swoosh and the sound of a giant's back breaking. A "crunch" to end all "crunches." But this was only a split second. The middle part was a rumbling, a meandering boom here and there. Then the big boom - but this wasn't so much "boom" as it was "splash." It sounded like water - maybe all the glass breaking? After the boom or splash came the hissing echoes. These were slithering sounds of snakes and they echoed and down Broadway. The entire explosion was probably three seconds. Swoosh. Crunch. Splash. Hiss. Echo. Repeat softly over human screams, like horror opera.
I made it back to the 50 Broadway entrance. Anna was there, tears in her eyes. She said in that thick Brooklyn accent, "I dun know what we gonna do..." A guy standing next to me said "What happened?" "A plane hit the WTC," I said, "And then a bomb went off." "No," said Anna, "Two planes hit!" Chris came back and we all headed up to the 19th floor. Jason had the radio on in his office, we all gathered. I went to my office and sent an email to the company, giving details, telling them we were almost all accounted for. Adam came back to tell his story: "Whoooosh! The plane came in, and Bam! It hit the South Tower." "But what kind of plane?" "It was at least an airbus." I couldn't believe it. A plane. Two planes. Michael arrived; we had been worried about him. Then details from the radio started getting out of hand. Two planes. One more in the air. The Pentagon was bombed or possible hit by an airplane as well. More details. More emails. I called Mom and told her I was OK. I think I woke her. "I'm so glad you called. I would have worried. Is it bad?" "Turn on the TV," I said. I called Mon and said "I'm at work and I'm OK." She said: "OK..." "You haven't heard? Two planes hit the World Trade Center." I talked. She listened. I told her to get me on IM if needed, as phones were sketchy but internet was fine. "If I'm away, I may not respond immediately, but don't worry. It just means I'm with the team." I called Grant, woke him. He asked what kind of plane (this seemed so important to all, me included). More calls and emails. Alicia called from Atlanta. Bad time, but she wanted a witness, I guess. While on the phone with her I heard a noise that was somewhere between a truck engine and a garbage disposal. It screeched metal, but was also muffled. "I don't know what that was, but I have to go." People in the offices across the alley from my window were pointing and panicking, waving arms and screaming into mobile phones. The North Tower had collapsed. I called Chris on his line and said "Come join the team. Don't be by yourself."
Of all the moments, the next 20 were, far and away, the worst. The debris came in cloudy waves that looked like smoke, clouds, snow, paper (always paper), soot and dirt all mixed. The first soot cloud came over my window and within seconds we could not see 6 inches out the window. The worst snow blizzard times ten. It was dark. The sun was gone. Mon called: "Are you OK? The cloud has covered lower Manhattan." "We're fine," I said, "It's not bad here." I gulped. it was night dark and seemed to be getting darker. "No problem, really," I said, "I have to get back to the team." "OK..." she said. The team had begun to panic, but only slightly. Whit and David had left earlier to get back to Brooklyn. We were worried - and had reason to be. Calin, Ray, Matt hadn't called in yet. Then the dust started getting inside the office. "Turn off the air conditioner," someone shouted. I pulled Jason aside (he's a volunteer fireman), "how much time do we have to live through this dust? I mean, does this stuff go away or is it smoke?" He said: "This looks like soot to me, so it'll probably settle. Of course, I've never seen anything like this before." I went to a window and took a mental picture. 10 minutes later, I walked back and could see outlines of buildings. We were going to live, provided the air wasn't contaminated. The west side of the office was getting very sooty. I was having some difficulty breathing. Just nerves and the soot. We created a "barricade" by the hallway to the west side of the office, to keep the soot away. The Broadway side of the office is dust-covered.
The soot cleared. We saw daylight, changed maybe due to dust particles still in the air. out my window, the office across the alley was empty. The team wanted to leave. Sean spent more time under his desk than at his seat. "Let's just get the fuck of out of dodge," said Arthur. Jason, Chris and I met in my office. Jason wanted to stay, we were always safer inside and as a group. Chris and I concurred. Then tower two came down only twenty minutes later (or so it seemed). The dust cloud didn't seem as bad the second time. I kept saying: "It'll settle This will settle." I said it repeatedly, nervously. Dinesh wanted to go to the basement. Arthur wanted to leave. We conferenced again. For some reason, Arthur's brother could reach him on his mobile constantly. He told Arthur there was a bomb at Stuyvesant High School. "I want to leave ground fucking zero!" he kept saying. I didn't like the idea, but it made sense on one level. We were 1.5 blocks from the NYSE, itself a prime target. What if these guys had big plans to blow us all into next Thursday? We gathered the team. We told them the plan: take the stairs down. Stay together. Come back if we felt any danger. We stocked some Cokes and donuts in a backpack Sean had. I lead, Chris held the rear. The fire door only opened after we kicked it several times (comforting thought). We must have looked like train robbers with our makeshift face covers for the soot. 19, 18....15...10...8....6...5... It started getting warm. The final door was before me. It wouldn't budge. I kicked hard. A voice from outside said: "Kick it hard!!" I laid into it. And we were in our brave new world. Two guys in uniform whom Jason knew said: "Hey! Why did you leave?!" Jason was mad: "After the first message, you said nothing! Actually, after we began our descent, the super came on the speaker, telling everyone to stay put. The alarm from the door must have woken him to action.
Outside, it was quiet. A silent Manhattan. The dust was everywhere. Picture a warm, snow-filled day.
The walk home. We waited for Dinesh who went "checking on a friend" with Chris. After what seemed hours, with Arthur nagging me to leave them, they appeared. We walked down Broadway and then took Water to the Brooklyn bridge, where crowds of people were crossing. Along the way, some offices had people outside with signs that read: "Water. Phones. Food." Before all the damn flag-waving that began recently, this was a nice, human touch. No fervor. No zealots. No kill slogans. No revenge. Just "Phones. Food. Water." Comfort. We walked in silence. Past 4th you could hardly tell it was a different day in NYC. A woman in front of me was walking too slowly, I moved to go around her, slightly annoyed as I often am. I thought then, how quickly we revert to our lives, our stupid lives. Is this good or bad? I think neither, it just is so. Mon hugged me - as she does every day - and the shampoo smell or her hair was so good. It smelled like something so foreign and new, but so familiar. "I was scared," I said. She said: "But you're here now." And I am here now. I am a witness. Our jobs, as witnesses, is to honor those who are gone by living. Some smoke still comes from the Towers. The markets open tomorrow - actually today in 8 hours. I would not wish on anyone what happened (murderers included). I wish on them: Phones. Food. Water.
September 10th - one month anniversary
To celebrate my one month, I have updated my doctor notes and plan, which you are welcome to check out and send ideas, questions or comments. I neatened them up a bit. If there are questions you think I should ask, let me know!
Today Mon, Dash and I head to the Academy of Science building in Golden Gate Park. It's a great way to celebrate the one month anniversary. Dashi loves looking at butterflies and frogs. We buy him a white alligator stuffed animal modeled after Claude, the in-house albino alligator. Dashi calls it "alla-ma-gator". I do fine throughout the visit, but the heights of the ramp in the rainforest are too much. I have to move quickly up the ramp. "Wait up Daddy!" yells Dash. Sorry man.
New Treatment for Vertigo
Later in the day, Miranda gives me an idea to combat my vertigo issue. We're in his office and I say: "Looking out the window behind you doesn't bother me at all, but if you were to ask me to walk towards the window-" he cuts me off: "Let's try it! Come on over here!" I hesitate. He promises to hold my hand. I stand there with him, 3 stories up from Hyde Street, looking at a steep hill and cars whizzing by. He says: "See that sign over there? Read it for me - backwards." I read: "Nob Hill Recreation Center" and pronounce it: "Retnec Noitearcer Llih Bon." "Perfect," he says, "Find another sign to read backwards, and then tell me what 468 minus 327 equals." It takes time, but I read one sign backwards and do the math. He says: "You still have vertigo?"
AND I DON'T!
But as soon as I start thinking about the fact that I'm fine, I start having vertigo again. He says: "It's like this. Your brain only has so much it can do. Your brain activity may fluctuate but your brain can only do so much. If you're scared, if you have vertigo, if you're confused, use your cognition. Perform 'mental tricks.' These have to be more complicated than 2+2, but not so complicated that you end up getting frustrated. Read a sign backwards, recite a poem, do some complex math - your brain must dedicate resources to this. This processing takes away the fear or anxiety because your brain almost always favors cognition and logical thought. It can't resist solving problems and it'll dump the fear/anxiety mechanism in a flash.
We also take this test. Let's just say that I am right-brain dominant in a big way. Try this test and let me know how it comes out for you.
If you're reading this blog and don't like heights, we just cured you! If you're reading this and wondering which side of your brain is dominant, we just showed you!
Blogs are not a waste of time!
Certain songs have taken on a different meaning for me. As I get used to the new me, these songs I have known for years suddenly have new meaning. These recordings are pretty rough, so you don't have to click the link. They are all "one take" shots. I just learned Rocky Top today. Also, I recorded the guitar tunes on my trusty mobile mic, no mixing. Enough with the excuses, if you want the original artist, I give you enough info to search.
- Do you know what it means to miss New Orleans? Great tune done by many greats. But the song has a slightly different meaning for me now. "New Orleans" is the old me. I'm never going back; I can't. As the song says, I miss the old me, but can't really explain how or why. I have images and memories, but is that what I miss? The song and I are not sure. I take a short solo on the last verse and outro.
- Rocky Top. The Osborne Brothers are truly unsung heroes (one of the first bands to use electric instruments). But that's another story entirely. I have never been to Rocky Top, Tenn. I'm not sure it exists. But it's where I'm headed. Undoubtedly the only time you'll hear me say "reckon" and "ain't" - and I say it in the same verse!
- I Drink Beer. Dan Reeder is a great songwriter. Please be advised that some of his other songs are pretty "raw" (maybe NC-17). This song is funny, and it calms me. The three men meeting are a very clear image for me. I have even sung this to my boys as a good-night lullaby. They're Irish, after all. Sometimes I substitute "milk" for "beer" (Mon likes it that way). Maybe the simple act of drinking a beer and talking is a calming image to me. You'll never surf again is also good. That song reminds me of my first meeting with the neurologist.
September 7th and 8th
Sloat gives me a replacement automatic sprinkler for watering the backyard lawn (the old one broke). For that, Sloat gets a free plug on the stroke blog! Go buy that new rake you've been thinking about. Order ferns and grass seed from Sloat! I didn't even need pull the old: "I've just had a stroke and don't understand you" routine. Long live Sloat! Yeah baby!
Radio Shack? Radio Shack is a different story. Radio Shack reminds me of me. People ask me: "How are you?" I... Don't... Have... An.... Answer. Mon says: "Should we have chicken for dinner?" Dinner? Chicken? Can I have a nap then answer? This is Radio Shack.
Jack (Dashi's friend) has a birthday at a bouncy house. I don't want to go, but we want to show off the new car. Can't resist showing a shiny car to friends. This is an interesting experience. The whole place is a bouncy-house heaven. And I go in the bouncy houses! I'm not saying I'm a bouncy-house groupie, but I go down the slide with Dec. Even he seems surprised. Dash takes me through some bumper pole field. The floor, however, is a different story. This place has multi-colored linoleum squares. To me, these floors go on forever. It's not a hallucination, it's more of a feeling. The red, yellow and blue squares mix around a lot. It's a psychedelic square soup. I munch some pizza, eat some Scooby-Doo cake and stare at the floor.
My new, new passion is projects. These projects are great because they are concise and quite rewarding. Here is a list of things I'm working on:
- Fix the backyard automatic sprinkler. Done! Thanks to (once again) our FRIENDS AT SLOAT!
- Garage door opener. We lost our garage door opener, so now I have to figure out a way to make the Highlander work without me falling over and without actually having a remote to program the truck. This is tricky. I might not make it through.
- Bluetooth working in Highlander. Are you kidding me? I crushed this. I even updated the BIOS on the bluetooth device in the car!
- Front room bookshelf. I'm not actually doing anything, but it's fun talking with Drew, our friend and carpenter. I'm definitely the idea man. The front room is going to look great.
- Albums. Shakey Milks and Monica's Living Room both have albums coming out. I'll announce on this site and pull the old: "listen to my album because I've had a stroke" routine.
- Bach. I'm learning more Bach. I'm not at the well-tempered-clavier level, but moving my slow way through inventions and sinfonias. It's rough when the 8-year-old girl on YouTube is better than you. (Although I think my playing is more soulful)
Everyday at the Zoo is a good one. Dashi likes the train and the playground. I'm not sure if he realizes the Zoo is a place where you go to see animals. But I LOVE time with the boys. I'd feel depressed without them. I'd have Mon, that's true. But something about the boys makes life worth living. Mon convinced me to have kids and now I can't imagine a day without them. You truly live life twice with kids. It goes like this:
- Something new happens (a baseball game, a new book, a train, a cloud that looks like your pre-school teacher - ANYthing)
- Your kid spots it and says something that wakes you up.
- You have experienced this thing before and part of you (the young, kid-part inside you) recognizes it. All that magic flows back into you. Clouds CAN look like people! I haven't looked at clouds in years! Or... There IS a lot of green in a baseball field. Or... That "Cat in the Hat" dude is really funny. Could I stand on a ball and balance all that stuff?
- Your kid gets pumped because he sees that you're into it - the thing he originally spotted.
- You get pumped because you see your kid getting pumped.
- Your kid thinks: "Wow. I make my dad happy."
- You think: "Wow. My kid just re-taught me something. I had forgotten that. Did I ever ask that question?"
- It's this virtuous circle of life magic. Corny but true. Something you never thought of comes right back at you. Dashi says: "Polar bears are all white. Why are they all white? Shouldn't they have some black?"
I walk Dec back from Kindergarten. We stop for pizza and pink milk because hey, life is short. At home, we play the card-matching game Nana gave us. A silver fish hits me in the right eye. I'm worried, but more tired than worried. I'm proud of myself because I don't get all lit up and fretful. I simply head to bed. I sleep until dinner. It feels great.
"Today was a good day," says Mon. I reply: "When you buy a car and an LED TV in one day, it's a damn good day." I'm not sure if I throw money around any more or less than I did before. I don't have any new sense of carpe diem. In all, I live the same way I did before. But it's always fun spending money and I have found I certainly excel at it.
I do fine at the busy car lot. Sometimes, having the boys around really helps. I focus on them when I feel a spin coming on. At one point, Tony the sales guy hits us with this elaborate plan whereby he's going to drive with us back to our house, bring the new car, and pick up my RSX for a trade in. I suddenly realize he's thinking that I'll drive him back. I say: "It's complicated. But... I can't drive. I mean, I can drive. But I can't drive right now." I start to explain and Mon says: "It's alright. He simply can't drive." Tony understands. Of course he understands, we're about to drop 30 large with the man. If I had told him I suddenly spoke Swahili and therefore couldn't understand the traffic signs, he would have been fine with that. "You got that check with your social on it?" Anyway, he's a nice man. He lives in our neighborhood - two blocks away! I feel he's honest. I feel this mainly because I gave him a rock-bottom price that I thought we'd never get, and he agreed.
We go to a party at Chris and Sara's. I worry on the way there. Will I freak out? Will it be too loud? But I'm fine the whole time. I probably shouldn't walk up the steep stairs, but I do, and it's OK. The kids play in a hot tub behind me, which bothers me, but less than I expect. Maybe because I'm laughing with friends? I drink Chimay beer. In fact, I take my Coumadin pill with a swill of beer! The jokes are funny, particularly because I'm not drinking that much. It feels great to make fun of people and be made fun of. Chris and Adam compete for the "idiot husband" award - and I'm not sure how that started because I think their jokes are hilarious. Al and I talk music. Sophie runs out to see us - the only girl in the small people gang, she likes seeing her mom. Besides a crack about mixing Coumadin and beer and a brief discussion about Xanax (which I am not taking), it's simply an evening with friends.
Driving home, I tell Dec and Dash the "Distribution Center" story. While I'm not a huge fan of this story (not my best work), Declan loves it.
I can feel myself focus more on the decision about my heart, and less on the stroke recovery. The spins still come - sometimes hard - but sometimes I catch myself thinking I'm going to live through this. I have been so focused on the day-by-day method. Everyone says: "Take it day-by-day." But that's all I do! I've had enough of day-by-day. I'd like to think about "next year" or "when Dec goes to college." But I stop myself. A couple big decisions are between me and "next year."
The morning appears to be tougher for me, no surprises there. My least favorite place is the shower. It's still hell in there for me. Maybe I should dress like Pigpen from Peanuts. I'm already married, so it's not like I'm headed out on the prowl.
We head to Nana and Papa's. On the drive over, we play Johnny B Good in the car. Declan loves it. He loves the part about the kid listening to the railroad. When we arrive, I nap on the couch, watching the Giants. The boys swim in the pool and I sleep through the whole thing!
Later, Dash digs dirt and puts it in the back of his tricycle. Above us, branches fall from the trees in a clatter of activity. I say: "What's that?" Dash: "Chipmunks! No... Squirrels! Daddy, what's the difference between a chipmunk and a squirrel?" I draw a blank. Why do kids think we have the answer to everything? I'm thinking and thinking. Chipmunk. Squirrel. What IS the difference? "Not sure," I say, "Maybe... They live in different places?" This satisfies Dash, besides, he's busy digging. "Well," he sighs, "Let's get this dirt back over to the construction site."
I'm re-instating my afternoon nap. It's a bummer to "end" the day in the middle, but man, I feel a lot better afterward. My spins appear to "re-set" if I rest. I'm certain napping is good for all of us.
Is Labor Day the celebration of Labor, or the celebration of not having to do labor?
September 3rd and 4th (doubling up again)
I'm reminded of this part of Ayn Rand's Atlas Shrugged (I searched but can't find the exact page). She talks about Hank Rearden doing something he didn't expect of himself. He surprises himself and wonders how he ever could do something like that. She talks about someone who has a heart attack and for the rest of their life, they think: "Is that thing still in me? What part of me was that?" Nowadays, if my arm hurts, I don't think "bruise," I think "stroke." Sometimes the spins stay with me and I think: "Is this it? Does this simply not stop?" or "Is this the beginning of this thing getting worse?"
Now I think talking to people is tough because I move my hands too much. When I'm animated and making a point (two things that often come up for me), I now believe my own hands make me sick. So will I become quiet and stoic? A laconic Simon? Doubtful. But possible. Al, Adam, Chris come over for beers and a fantastic Giants game. In the kitchen beforehand, the room is moving around, the floor shifting beneath my feet. This doesn't make sense. Mr Bad News doesn't come in here and rough me up. This is my house! But he walks around like he owns the place.
I run errands with Mon. I'm beginning to worry that me being around so much will drive her crazy. I definitely have plans and want to get stuff done. I have essentially translated my job into my life. The bonus is that I get to spend time with the boys and Mon. The downside is that they have to spend time with me.
First errand: new TV?
Mon and I visit the Video Only store. Folks, this is a GREAT store. Perhaps I can swing a deal for them to sponsor this blog (free TV). They deserve the exposure!. TV displays everywhere, showing these cool nature shows (not like the ultra-violence at Best Buy). Prices are rock-bottom, jaw-dropping, even-a-Donovan-would-buy-it type prices. Elias, the sales guy, helps me out. But I can't take these videos everywhere! The screens suck me in and fear spreads across me. I mean, what IS that thing on the screen? A fish? A clam? A seahorse? It's an HD freak show and the colors are vibrant. Is it too beautiful? Is my amygdala firing fear signals?
Second errand: used Highlander?
Let me stop here and make sure everyone knows one thing. You should never ask your spouse what he/she really needs. The answer will always disappoint you. After talking about spending some money, I ask Mon: "What do you think we really need?" Answer: New Car. My thought: She's right, but if I had never asked, we wouldn't be shopping. Mon test drives a Highlander. I don't mind the bumps and accelerations. I try to talk Tony down from the asking price. He smiles. I'm making progress.
Dr Levy, my potential primary care doctor, thinks I should avoid life on Coumadin. "One of my Coumadin guys walked into a tree yesterday. Now he's in the hospital." So it's the John Wayne hairdo for me, folks. I got my hair cut Friday. I'm keeping it long, in case I want to switch to a Joe Strummer Mohawk (see Sep 2nd).
Lots of important things to write about, but none more important than my hair. Most of you know me pretty well and it may be surprising to discover how vain I am. But Mon knows this. I am very, very vain. Besides confidence, vanity might be my strongest character flaw (or strength, depending on how you look at it).
My hair is getting out there, folks. It's approaching pompadour excellence. And I'm thinking of going with it. The table below summarizes my hairdos, depending on which plan I follow. I currently look like that guy from Twilight.
Rules for Being on Short-term Disability
- You can grow your hair long, but make sure you shave every day. If your neighbors see you clean-shaven and well-dressed, but walking a little slowly and with long hair, they'll think: "Maybe he's taking a home vacation. He might have had too much to drink last night." But if you're unshaven, sloppily dressed and walking slowly, your neighbors think: "Where's the meth lab?" Or here in the Sunset: "Where's the Pot House?"
- Don't stoop over. Stand up straight.
- Smile and wave.
- Whistle if you can. Whistling tells people you're calm and know exactly what's going on. Broadway melodies and Burt Bacharach covers are perfect. No classical music (too snobby) no punk rock (too suspicious). Here in San Francisco, I prefer "Do you know the way to San Jose?" I'm not a Burt B fan, but this tune is great. Also a subtle jibe at those folks paying way too much for a house in the city.
I buy new software for my recording studio. I'm down in the Groove Lounge tonight, tinkering with the sound. This stuff is amazing! In digital studio recording, we have latency. Latency is the enemy. It's the time it takes for the software to process the input from a given musical device. The more latency you have, the more time between hitting the key and hearing the sound. It can be maddening. If the settings aren't right (and most of the time, I'm guessing), it feels like I'm 1 millisecond ahead of the sound. It's a strange brain trick. I play Bach and some Oscar Peterson licks to see where things are. It twists me up inside to hear this. Great sound. But. It's. Off.
And I realize: Yet another stroke analogy! You hit a piano key, and a second later you hear sound. You play more and more, until the sound is a looping cacophony of noise.
The mothers at the Kindergarten playground look at me strangely ("Is he unemployed? Maybe... a drunkard?"). I smile and sit down. The motion here is tough on me, but I have to get used to it. Kelly, my friend, who's mom had a stroke a couple years ago, says: "Hi Simon. Seems like you're better and better." Another mother, misunderstanding our conversation, says: "That's right. I'm sure Declan is better and better. He cried much less today when Monica dropped him off." We dive into a conversation about separation anxiety, remedies. We shrug our shoulders, commiserate with each other. This is so tough! Dec runs down the stairs to me and I can't help but feel a rush. I hope my kids always call me. I hope they live at home until they're 40. I hope they let me help them the way others are helping me now. I hope I never complain about them sticking around.
Dec is having a rough time at Kindergarten. No way around that. I wonder how much my ordeal affects him. Is he worried about me? It sickens me to think that he is, but he might be. Today, Dash says: "Daddy. Your head almost better today?" I say: "Almost 100 percent." "Ah ha!" he says, holding up 10 fingers, "THIS is one hundred!" Does he sense that I'm not the same? We read books on the couch while Dec is at school. We do a puzzle. Does he wonder: "Why isn't Daddy working?"
I have posted a link to my notes in the upper-left corner of the website. I will be updating them regularly. They give a full picture of what the doctors say, what I think, the general "plan."
I had written a really boring post. This thing was a sleeper express coming straight outta snoozeville. You guys should thank me I just erased it. Let's face it folks, sometimes a brain is just a brain. So what to do?
When in doubt, come up with a top-10 list. It gave Dave Letterman a career, why not me?
Top 10 Reasons You Know You've had a stroke
10. Your brother Charley's jokes suddenly become funny.
9. Your friend tells you she's recovering from skin cancer. You reply: "Skin cancer? Skin cancer is for wimps! Get a real health problem!"
8. You drink one beer and think: "I'm such a rebel! Look at me drink!"
7. Since you're on Coumadin, green leafy foods worry you. The vitamin K will absorb the Coumadin, making your blood "thick" again thereby increasing the risk of stroke. You now look at the salad bar at Denny's and think: "Ah ha! The death train!"
6. While playing baseball with your kids, you say to another father (a friend): "Hey Adam, if I get hit in the head with a ball, be sure to tell the EMT's I need a shot of Vitamin K. Make sure they get here within a 1/2 hour or I'll be dead. OK?" He replies: "Ah... What?"
5. You tell your wife: "I'm headed in for a 10-minute snooze" and return 2.5 hours later, smiling and slightly drowsy. She smiles and says: "Dinner time."
4. Kindergarten appeals to you. There are many interesting things in there. You remember your old job, but it's foggy now. Kindergarten seems much more compelling. How much do they pay Kindergarten students these days?
3. Your wife holds your left elbow and suddenly the world swings back to normal. This might be love. But it might also be the fact that the area affected by your stroke really likes steadiness on the left side. A held left elbow is a beautiful thing.
2. You ask your neurologist: "I can't help but feel sometimes that something is a little... off." He replies: "Long before your stroke, something was off. Let's face it, you've always been a little off. I'm not going to fix that. We don't want to!"
1. Your brother calls you. Your friend calls you. People check in on you. Sometimes there's a canyon between you and other people, but sometimes the canyon is bridged. Sometimes panic and sadness creep in - craftily - but you ward them off. Kids voices wake you. You think: "No one has more or less. Today is all we have."
August 29th and 30th (doubling up on days because that's what happens when you have half a cerebellum)
Please note the nifty "feedback" link above. Don't be shy, folks. I'm sharing some pretty heavy-duty post-stroke ruminations here! An email won't kill you. There is certainly no causal evidence to suggest emailing stroke survivors actually gives YOU a stroke.Lots of good friends out here. Amazing people. People cook us dinner, call us, take the kids. I want to say: "I'll pay you back" but it'd be a lie. We never will. It'd be impossible. They literally save my life. Al and Adam come over Friday night and I drink TWO beers (actually about 1.5). The Giants game is on in the background. I always tell myself I won't talk about the stroke or PFO but this recovery is like being a former drug addict. You simply want people to KNOW. Not sure why.... Since Al has experience in this domain, I want his opinion on everything. They listen to my ramblings and questions. They are great friends.
We also spend a lot of time discussing "normal" subjects, like baseball, music, bookcases and how they would fit into the front room. This amazes me. I sit there thinking: "I'm following along here. I appear to be understanding everything just fine..." I have often feared that the only person who understands me is Monica. And she's so patient, she doesn't really count. If I were speaking old-English backwards, she'd nod and say: "Can you try again?" But I know no one else would be like that. So friends are a "test." Strangers are another test. And this week-end I get tested.
Saturday we lounge in the morning like true Donovans. It's train sets, the paper, the web, and coffee. Dec takes a break from Kindergarten. I take a brake from the stroke. In the afternoon, we take the boys with Adam, Cortney and their friends - NEW people. These new people have two kids, and at one point I'm in the house with 6 kids and 2 guys. I only know Dec and Dash! I'm a bit panicked. The motion is sickening and I can't get the sunscreen on Dec's face. I ask Adam to please help Dec find the baseball toys in the garage, because the stairs yawn at me when I open the door. I put my crocks on and my mind says: "Oh no! No hippie gardening shoes for us!" Every time I move my foot, the floor expands. Crocks are out - maybe forever. I put on regular shoes and geek socks. We walk to the Sunset rec center down the street and play baseball. I pitch! I love it! It's hot and sunny and I'm pitching to the kids. A couple times, my footing eludes me, but otherwise, I'm fine. I can't wait for Mon to get there - she's a security blanket. I'm now one of those old men who can't function unless he sees his wife. Pauvre Monique!
Driving in the car Sunday, a conversation.
- Declan: "Daddy. I'm thinking about what I want to be when I grow up, but I'm still just a kid, so I have time."
- Me: "That's right. You have plenty of time to think and discover what you really like to do."
- Declan: "Yep. I sure do. Daddy, when are you going to decide what you're going to be when you grow up?"
- Me: "Well. I decided a long time ago that I like working with computers. So that's what I do."
- Dash: "I'm going to be a buffalo!"
- Mon: "A buffalo?"
- Dash: "Yep. A buffalo. They have horns."
- Declan: "Well. If I had to choose right now, I'd be a train conductor. He's the boss of the train."
- Dash: "I'm going to be a buffalo."
At Aptos Park, Dash has a big wipe-out in the mud. Some big kids (his brother included) have been chasing him. I run over to help him and (WHAM!) have a cerebellum moment. While kneeling down to talk with him, my sense of direction suddenly alters. The expanse of the park to my left stretches out (telephoto effect). Mon and my friends are to my right, I know this. But my sense of direction tells me to go straight. I even start moving that way. But there's nothing that way. I close my eyes and think. Then I try not to think. I look over toward Mon and my friends. I can see them. They're on my right. But every time I look left, it feels like I should head that way. This is not a spinning sensation. It's disorientation. My brain tells me something my eyes don't agree with. The world doesn't spin, but it feels... off, like looking at geometry you don't understand.
Perhaps an example would help. Let's say you're at a party. You're talking to someone and you put your glass down on the table without looking. Now you finish talking and - still without looking - you move your hand to pick up your glass. But here's the catch. While you weren't looking, someone has moved your glass. Your hand closes on exactly the right spot where you expect the glass to be. That instant disorientation you feel - even before you think: "Hey, I thought my glass was here..." That instant of complete and utter disorientation is what I feel. Except for me, it appears that the instant lasts longer and my brain doesn't care what my eyes are reporting. Even when I walk back towards Mon and my friends, I feel I'm headed the wrong way. I can't stop looking left, checking.
Dash is crying, but he walks with me. He says: "Daddy! I don't like being chased!"
Me neither, man, me neither.
August 28thSomeone should slap me (lightly) on the face for how self-absorbed this blog is! What a joke! I hope this actually helps me, because I read these pages and sometimes I think: "That's not exactly true..." But it was at that moment. So I leave things unedited.
Tough day for Dec at Kindergarten. He clings to me, saying: "Don't go!" In a strange way, I'm glad my eyes well up and my throat tightens. I have felt a bit removed lately, so I'm very glad I still have emotions. I still care!
Why is Kindergarten exactly like having a stroke?
- You never signed up for this. It was assigned to you.
- Everything is exactly the same, except that everything has changed. This confuses you.
- The days are way too long.
- All your old friends are somewhere else, and they're super-busy.
- New people in your life (teachers, doctors) are important. Their opinions matter (life/death). But you hardly know these people. You just met them! They calmly discuss your fate and pretend your opinion matters to them.
- You miss being home. When you're home, it feels different. Distant.
- You wonder if people understand you. Some people speak a different language.
- You feel alone, even in a crowd.
- You make a new friend. Your past doesn't matter to him.
- You feel proud at the end of the week. I DID IT!
- You're interested in this new life. There are new things to do, which intrigue you.
- The schedule appeals to you. You feel yourself getting used to it.
He does not want to stay at Kindergarten. It takes some convincing (and reading a book) to get him back in the room. But he stays. I leave, close to crying. When I pick him up, the teacher gives us a big thumbs up. She says: "No problem after you left. He was great all day."
I'm so proud of Declan. He inspires me.
August 27thTwo intense doctor visits. I'm now seeing Dr. Perry and Dr. Miranda. Perry focuses on the emotional side of stroke recovery. I like her. We talk through my fear and sense of over-whelmed-ness that occurs from time to time. Recovery from stroke (and probably any recovery) has three distinct phases. This is my non-medical, non-professional and not-so-humble opinion:
Phase 1 - deep recovery (week 1, for me)
Your body is in such a state of shock, it actually helps you focus on simple things. Left foot forward. Good. Now right foot. Good! Drink water. Good. Don't throw up. Great!
Thoughts are simple. The right-brain has stepped in and you feel strangely 'at one' with things. Death is fleeting, but not your enemy. You remember it as a calm fog coming across the beach. A little cool, but pleasant.
You make huge progress. From day to day you jump from not being able to stand to walking, albeit slowly. The future is your next thought. The past is your last idea. You're trapped, but the bars are gilded and the floor is a nice, tasteful shag.
Phase 2 - middle earth (week 2-4, right now, for me)
This is the scary part. You feel well enough to do certain things, but the more you reach, the longer the road feels. The telephoto lens stretches your recovery out and you think: "When can I get back to normal? What is normal? Have I changed? How?" Sometimes, you're fine. Sometimes, the thing you did yesterday is impossible today. You have setbacks. This frightens you into thinking the 'new you' is not the 'old you' - which is actually true.
You start to really think about how close death was and it doesn't feel like a cool fog on a beach. It feels like some jerk cut you off and made you miss the exit - and you're late! You blast your horn! But it doesn't matter. The exit flies by. It feels like the time you showed up to get tix for your favorite band and the line stretched around the corner and down the street - no tickets tonight! You're home listening to a record while your band makes history.
Thoughts come quickly to your mind, questions about how 'effective' you are now. Is this confusion? Is it emotional? Is my mind working extra hard because my cerebellum is weak? Can I handle a discussion that goes beyond Lego construction?
Phase 3 - on-going (future for me?)
You accept the new you. It's better and worse and not better and not worse. It's simply a new you. Your mind frightens you from time to time, and you try to learn from this. You refuse medication, because you know you can consciously choose your reaction. Chemicals run our brain, but your mind is not a slave to them. However, your mind is not the master either. These are not things you 'crush' but rather things you 'manage.' I'm thinking less like a boxer and more like an animal trainer. You eat bananas, turkey and drink milk - these foods calm the brain.
Some people say: "You've changed." You reply: "I know." And move on.
August 26thLinear thought gets a bum rap. Our ability to say "This. Then that. Then this (might be a slightly different 'this')" is often considered "Western" or unenlightened. Today, I lose my linear thought and experience terror. I'm talking you-just-took-off-and-the-pilot-comes-on-with-bad-news terror. For about 20 minutes (maybe less) I feel like I can't hold a thought in my head. Beforehand, I do the following:
- Walk Dec to Kindergarten (Day 3!). No issues there at all.
- Get a ride with Mon and Dash to Miraloma and visit the pre-school for about 5 minutes. No problem!
- Get blood drawn at St. Mary's. Hospital hallways are terrible for me. Not having a far-away vantage point, something to focus on, is really rough. My sense of direction, never my strong suit, is now pretty much non-existent. The lady who draws blood is a pro! She says: "I'm taking you on a trip to Hawaii" I didn't even feel the needle. At the end I say: "Where's my skirt and hula dance?" She laughs, forgetting to hand me my post-blood-draw snack.
- We drive back home, listening to a great podcast about the history of Rome. No issues.
- Mon drops me off by Jefferson school so I can try to see Dec on recess break (unsuccessful). No issues, but I check email on my phone on the way home and think "big mistake." Something about looking up from the small phone and seeing the depth of the street throws me off. Way off.
- At home, I really want to put the mini-SDRAM into my new phone, so I walk down the garage stairs to my office. Hello Big Spins! I turn around and head to the bedroom to lie down.
And that's where I lose linear thought. "This. Then that. Then This." Turns into: "When? Who? Why? What? Where? and Huh?" It's anxiety mixed with some reality-changing cerebellum tricks. Part-way through, I think: maybe this is another stroke...
Never at a loss for strange a brilliant ideas, I think : "I'll go play piano. No one can have a stroke and play piano at the same time..." So I play:
- St. Louis Blues
- Sunny Side of the Street (moderato, almost ballad-style)
- Waltz for Debby
- All of Me
I also sing the Dan Reeder song I Drink Beer. This calms me, but whenever I stop playing, the panic returns. Mon arrives and talking to her (about yarn, of all things) sooths me. After a while, I fall asleep on the couch.
After talking with Miranda and having a nap, I'm over this, but jittery. We're meeting tomorrow and we're going in-depth. But I realize recovery is not going to be simply balance training and aspirin. Recovery is going to change me. Recovery is recognizing the new limits (after testing them). Recovery is liking the new me, even if others don't.
The key is letting go without losing.
August 25thIf it's terror you want, this blog has it. Shall we introduce the psychology articles that talk about post-cerebellum stroke victims with psychological disorders, including schizophrenia? How about studies that show the cerebellum helps us with strategic thought processing, abstract notions and cognition? There's a dandy one that discusses how "right-side cerebellum strokes, while rare, are MUCH WORSE than left-side cerebellum strokes." This focuses on children, but discusses in-depth the cerebellum and cognition.
Miranda is going to get an earful this week, for sure. I finished My Stroke of Insight. A good book, but her stroke is more like my sister Oren's. In some ways, my stroke is a subtle hindrance with some long-term effects. Will I always get dizzy and have to sit down when I speak to people taller than I am?
Dec leans against my back at the Kindergarten playground. That feels great. He gives me an earful about how if you're bad at Kindergarten your name gets written in green. You also get check-marks next to your name for "really bad stuff." This worries me. I say: "How do you feel about this?" He says: "I didn't get an green or check marks." I say: "How do you feel about these colors and check-marks." Dec says: "I think people should obey rules."
I think: Does this kid even need parents? Maybe he should go back to Microsoft for me.
The boys don't seem to notice too much, but they know. In the backyard, we play soccer. I can kick and pass pretty well. I tell them: "I'm going to try to run a bit. Can you guys help me count my laps?" They agree. Dash is the race starter. Declan holds a stick (my starting gate).
- Dash: "Ready. Setgo!"
I race across the grass (about 10 feet), turn, and race back. I do this five times! The count goes something like this:
- [first lap]
- Me: "One!"
- Dash: "Daddy, isn't that two?"
- Dec: "No. It's just one. You have to go there and back to make it a lap."
- [second lap]
- Me: "Two!"
- Dash: "Four?"
- Dec: "Um. I think that was three, actually."
This is great for me, as I am not only supposed to work on balance but also cognition and short-term memory. It's tough holding a number in your mind while two other people shout out different numbers. Great training!
Next we setup an obstacle course in a circle. I cannot run in a circle! Dec does this 10 times. I last two laps and have to sit down.
Dec says: "You're not fast like you were before. But you're not slow either. You're now what I would call 'medium fast.'"
I need fewer psychology articles and more training with Dec and Dash.
August 24thI am torn from my family and taken to a completely new place - with strangers. We line up at the door, single file. A woman holds a sign with a number - that's my group number. People there are my age, mostly. I think they picked the group this way, but I'm not sure. The big guys run the place. I'm told what to do when and where to go how. Here's my seat; sit it in. Look this way. Pay attention. I listen, terrified. No one explains this to me; no one preps me. We sit in the middle of the room. They force us to introduce ourselves. It's my turn, so I say a little story. No one laughs. No one gets it. There's blank sheets of paper and pens on the table. One guy sits there, doodling while I talk.
Is this a stroke support group? A torture session at the hospital? No! It's Declan's first day of Kindergarten!! Congratulations Declan!
He tells me: "I was happy all day." He also says they have "two pretty long recesses." The Russian kid Alex (called "Zander") is nice but a little quiet.
How can I continue this self-absorbed blog with two great kids who teach me every day how easy it is to be me?
August 23rdThis blog is not all about death. Besides, the only guy to make death funny is Woody Allen. And I really want to be funny. While I may wonder about death a bit more, now that I've "seen" it, I'm not sure what that makes me. I'm worried my friends look at me and think: "Better you than me, old scab." My time in the hallway (see below) and my rejection of life seem foggy to me now, soft around the edges. Time has past. We say we'll keep our intensity, we make ourselves promise not to forget a moment. But inevitably, the moment fades. How can we keep that intensity? We'd have to practice dying every day, and then one day get it right. But who would want to hang with that dude? He'd be the guy in the room with the gothic hairdo and the incense.
So has this changed me? I'm definitely more of a "why not?" guy than a "why?" guy. But I was already a "why not?" guy before. Now I more of a "why the hell not?" guy. At Declan's pre-Kindergarten parents day, I meet Ken who was rear-ended by a drunk driver on I-280. I say: "You're just like me! Every day since then is bonus material!"
We drive back from Danville and go straight to Jefferson's kindergarten get-together at Mother's Meadow park (which I call "Mother's Milk" to Monica's endless dismay). We meet Drew and Kelly. Annabelle (their daughter) and Declan successfully ignore each other. "You're in the same class!" We shout. They look at us: "So what?" Kids make their own rules. But Dashi waves to me from atop a slide, eyebrows raised. I wave back and think: "Why the hell not, kid. Why the hell not?"
Talking with Ken, he tells me his mom had a stroke a couple years ago. I hadn't told him about my condition, but Kelly had beforehand. I'm fine with this. At the end of the day, I'd rather impress people by my ability to talk and move my hands than I would have them worried about meeting me. Next time I have a new friend over, I'm going to sit down at the piano and play Bach's Invention #13 and say: "Before my stroke, I couldn't even read music. NOW LOOK AT ME!" People will be chopping out their cerebellums left and right! Maybe I could market some vitamin juice and a "cerebellum bracelet" on the side...
While talking with Ken, I get some heavy spins. Not on the same level as Day of Infamy, but worrisome. I focus on a tree up the hill. Ken knows something's up, but he plays along, just keeps talking. I walk to Mon and ask to round up the boys. By the time I'm back at the car, they have faded. It's a simple reminder this is not done yet. Strange days await. The spins come back and forth tonight - too much driving?
Charles comes over and we watch the Red Sox, who still matter to me. Dash is a Yankees fan and a Dodgers fan. He likes our shocked expressions when he tells us. But that's how it goes. You love them, feed them and read them stories and they end up liking the Yankees.
Every day is bonus material.
August 22ndAnother Dr. Miranda quote: "Part of your recovery is understanding what you went through and coming back on the positive side of it. We all face death every day, philosophically. It's a metaphysical question. But we ALL think we live forever. You have seen this in a different way. The question now is: Did you understand it? You can't jump back into work, swinging from one tree to another. You have to stop and understand what happened to you - really - in order for it to be a positive experience."
Miranda's words come back to me all day. People talk to me - good people, people I trust and love. I look at them and think: "Am I different? Are YOU different? Do you know what death is? Do I know?" Beer still tastes good. Jokes are still funny (mostly mine). I'm more tired and my head hurts. But sooner or later everyone's head hurts. Deb asks if we have some Advil at the end of the day and I'm literally shocked. I think: "Someone else's head hurts. Wow." How self-centered but true!
To escape the Sunset fog, Mon and I invite all our friends to her parent's house in Danville, CA. The guest list is great. This is top-notch, heavy-duty friend power. Teng said to me: "Although you're tired, you should spend time with friends and family. There's no doubt this increases strength. You should also take more Coumadin." The guest list is:
- Adam, Cortney with Nate and Matthew
- Chris and Sara with Cooper and Beckett (Wellington says to me: "Beckett? Damn. Cool name."
- Wellington with Akira
- Dan with Ali and her friend Denali
- Al and Deb with Sophie and Jack
- Keara with her new used car she's driving across country!
The Geotrax train set is huge and the kids are great. Dec and I talk about what a pain it is when others play with your special toys Nana has given just to you. He says: "I don't mind them playing with the toys, but the train track they made was ridiculous. Did you see where they put the dead end?" I can't help but respect this. My new philosophy: I'll share, but you better amaze me.
I don't swim, but dip my feet into the pool. Kids are screaming, throwing stuff. The water churns around my legs. Akira shoots a basketball into the floating hoop-net. The world spins a bit. Not too bad, though. It's the kind of thing I can discuss and people say: "Ah. Interesting..."
Chris makes melted butter, oregano and garlic dip sauce for some clams he bought at the farmer's market. I drink Al's beer, eat some clams. We laugh. We talk. A kid cries, another laughs. A parent is alarmed.
Do I know anything about death these people don't? Is my brain different? What if my clot were two inches to the right or left? Does it matter?
I'll share, but you better amaze me.
August 21stWe head to St. Mary's to draw blood for a test to see my INR. This tells the effectiveness of the Coumadin in my system. You don't want Coumadin to be too effective, otherwise you'll spontaneously bleed. No one has told me, but I'm guessing spontaneous bleeding is right up there with eye-ball-bulging-out-of-head on the fun meter.
The guy drawing my blood is named "D." He closes the curtain on our little booth of blood and says: "I have some great news! This is my last day of internship. I get my license tomorrow!" "Congratulations!" I say, despite my sardonic blog tone, I'm actually quite nice and sincere. "D" proceeds to tell me (this is not made-up) that he was laid off from one hospital, sold used cars for a few years, and then figured it was time to get back into the medical business. He's been at it for the past year, studying at night and getting his physicians assistant certification. I love this story. In fact, I would rather have a used car salesman pulling blood than some MIT stuck-up know-it-all. He found that vein and I filled that vial like I was the smoothie machine at 7-11. Dependable and delicious! "D" gives me a little lunch bag with a rice crispy snack and apple juice.
I exit my booth and say to Monica: "Are strokes fun or what!? Free snacks!" She smiles and eats the rice crispy treat.
We have a good visit with Dr. Miranda. Despite the fact that his office is filled to the gills with Macintosh machines, I'm beginning to really like this guy. He's more arrogant that Dr. Teng, much more sure of himself. He tells me: "You DO NOT want open heart surgery. No. No. No." He asks me to run down the hallway. I told him 5 minutes previously that flapping my arms and flying seemed easier than running to me. So he said: "OK then. Let's try it." He has a matter-of-fact way of talking and an accent I can't place (Spanish? Italian?). If you met him at a cocktail party, you'd be charmed. He'd be the guy with the hot chick on his arm, him minus 20 years and female. Teng wouldn't even be at the cocktail party. Teng's at home studying, thinking about your heart problem that doesn't exist yet.
My "run" is anti-climactic. It's more of a slow-motion jog and I keep my eyes focused dead ahead. The hallway zooms by. Anyone reading this could zip by me. But when the 30 feet are up, I have conquered something. The Cerebellum (I think) can make us hesitate. Since the rest of the brain is checking in, sometimes the Cerebellum is the "wait a minute!" guy. When you're collecting money for a beer run, the cerebellum is the guy at the party who says: "Do you think anyone here needs MORE beer?" My goal is not to conquer the cerebellum. That's silly. My goal is to welcome him back, get him comfy and hold his hand when the plane takes off. My goal is to have a cerebellum who says: "Ah OK. Let's buy more beer."
This whole experience makes me want to drive again. THAT will be more eventful. I watch Monica drive and think: "How can you steer with all that stuff going on outside the window?"
August 20thToday Dan and Wellington came by. Dan gives me some links for exercises to help my Cerebellar ataxia, which is doctor-speak for "can't walk because I'm falling over." The exercises are interesting, and only take a 1/2 hour. I like the Frenkel, but you have to focus. The Cawthorne-Cooksey seems shorter.
We walk down the street for tacos at Underdog's, never disappointing there. At the table, I chew my taco and wonder: "How am I going to walk out the door?" Dec plays with his Lego truck on the table. Dan tells me: "If they're going to by-pass your heart during this operation, you may want to think about it."
Dan talks me through some main points:
- During open-heart surgery, they "by-pass" your heart. Your blood pumps through some machines. For me, my operation would be short, but this raises concerns. Some patients have depression - or even diminished IQ. And I need all the Q I can get!
- The device operation is completely non-invasive. Slip through the vein, wham-bam, we're done.
More to think about as Mr. Crusher defeats Mr. Bad News.
August 19thDash and I decide today that a very cool last name would be "Crusher."
"Hi there, what's your name?"
"Crusher. Simon Crusher. And that's Mister Crusher to you. Any other questions?"
"Nope. No questions here."
That would certainly be cool. As it goes, our last name is fine. Although I forgot to mention that on the Day of Infamy, the hospital spelled my last name Donavan. This wouldn't be so bad, except for the fact that I gave them my license. All my CT scans and MRIs have my last name misspelled. I'm thinking of calling them and saying: "Hey. Change that last name to Crusher. Since the insurance companies are going to give me the runaround anyway, we may as well have some fun with it."
Insurance rep: "I'm sorry, Mister Crusher. You're not covered for the hospital CT scan. We can't find any coverage plan for a Simon Crusher."
Me: "Really? You sure you want to deny coverage to a dude named Crusher? I'm going to let you think about that. I'll call back later."
I'm out for a walk today by myself. I walk in front of a car and actually hustle to the sidewalk. You know that fake run you do when a car is waiting on you to cross the street? Yeah. That one you thought no one knew about. Anyway, today I pull the "I'm hustling along to get by you Mr. Car Driver; I'm doing the best I can." I stop on the sidewalk and the driver gives me a wave - young kid with a Giants cap. He takes a long, long look at me. I can't help but think it's pity. After all, I'm hanging onto the Stop sign pole, panting. Heavy case of the spins.
Mr. Crusher defeats Mr. Bad News!
August 18thToday I realize that this road is a bit longer than I had expected. Since I can walk and generally function, the stroke symptoms are tougher to define. Strange, no-warning "spin cycles" hit me. Someone drops a coffee cup and the whole room bounces a few times. Stuff like that. The fatigue is strange too. It's double-espresso fatigue. I feel sleep and sleep denial at the same time.
Today Mon takes the boys after breakfast. I'm alone in the house and reasonably conscious for the first time since Day of Infamy. I look around, turn on some music. I'm not claiming Michael-Jackson-like abilities before Mr. Bad News, but I could shake it. I knew how to dance. My moves were perhaps stolen, but they were heart-felt and (generally) on beat.
But I can't move when I hear music. It's like an engine that cannot start. I move my head, get the spins. I'm thankful I can still play music.
I love you sunshine - a song I wrote Friday. I wondered if the stroke would change me and imagined myself before and after the stroke as two different people.
August 17thWaiting in the cardiologist's office, Mon says: "When we were here last week-" "Wait a second! We were here last week?" I say, cutting her off. "Oh Yeah," she says, "You sat right over there..."
I can't believe it. This is the same office I had the TEE procedure done. Not only have I forgotten the procedure, I have forgotten the entire visit. Mon jokes about how I told the nurse I could walk by myself and then slowly, slowly, SLOWLY made my way to the door. She turned to Mon and said: "I think I'll just run and get that wheel chair now."
The visit with Dr. Teng goes great. I love this guy. If I were a cardiologist, I'd be exactly like him. He's very intense. When he laughs, you're not sure if he thinks it's funny, or if he's being nice. But he listens really well. He also doesn't talk down to you (like some doctors). He always says: "Ah good question..." or "I like that thought there..." This makes a huge difference for me. It is, after all, my heart we're talking about. My Dad would be proud of Teng. He spends 2 and half hours with us.
I start the meeting with a plan. I lay out my thought process and decision tree.
- Find out if I some crazy genetic predisposition to clotting.
-- RESULT - If yes, shut up and start that Coumadin! Continue living.
-- RESULT - If no, then move onto PHASE 2:
-- DECISION - three pronged:
-- 1. Stay on blood thinners anyway. Live life, but wear a helmet skiing and pray you don't get head trauma.
-- 2. Get PFO device implanted. There are pluses and minuses here. Teng agrees to setup time with one of the device surgeons.
-- 3. Get open-heart surgery and suture the pesky hole-in-the-heart. Again, there are pluses and minuses. I like this way at first blush because it smacks of a let's-get-this-damn-thing-fixed attitude. I picture John Wayne saying: "That goddamn PFO device is for commies! Now get the doc in here and cut me open!"
After the doctor's visit, Mon and I go to a yarn store. Not working doesn't mean more independence. Not working means doing more of what your wife wants to do! But she does promise to knit me a new scull cap. The back reads: "If cerebellum falls out, please return to:"
Mon has trouble reaching some yarn on a top shelf. I whisper: "Let me try to reach that." BIG MISTAKE. Going up is fine, coming down feels like the never ending bookcase of yarn. It's an infinity of nicely colored, high-quality, happy-sheep yarn and a bad case of the spins. Have to close my eyes. Breathe. In. Out. In. Breathe. Eyes closed.
The store manager - a nice woman with a finely knit sweater - says: "You OK?" I smile and say nothing.
August 16thThe house is once again a mess with toys. I have to step over trucks and a half-built train track in the front parlor. Hearing Dashi say: "Daddy! Come play with me!" sends a rush through my body.
Today we see our good friends Adam and Cortney and their two boys Nathan and Matthew. At the Aptos Playground, I walk slowly up the ramp. I'm holding the railing. Adam hugs me. I can tell he's surprised to see me and that I can talk. "You seem to be," he says, "able to..." "Talk?" I say.
I talk with Adam and Mon. At Aptos, the wind blows across the bike track. The 4 boys play on the tire swing. I can watch them if I sit down. If I watch them standing or while walking, the spins set in.
Adam, Cortney, Mon and I and all the boys go to the taco place down the street. All goes well. At one point, my watermelon juice drink teeters on the edge of the wooden table. It feels like the glass of juice is steady and the whole room tilts back and forth.
I say: "Let me explain to you guys what the cerebellum feels like..."
August 15thDeclan sees me walking down the hallway and says: "Dad. Can you run?" I smile, shake my head and say: "Not yet." Dashi says: "Dad. You're just a little bit sick, right? You take your medicine! Do I have to take medicine?" I explain that no, Dashi doesn't have to take medicine. I'm the same as before, just a little slow walking. Dashi says: "Daddy! You're slow like Tommy Turtle!"
Through all this dizziness and regaining my balance, I can somehow manage to pitch the ball to Dec and Dash in the backyard. No problem. I can catch a ball - and even make some fairly spectacular catches. But my boys remind me how far I have to go. They run so fast, it gives me spins. I have to look away. We can't have our normal, nonsensical three-team football games that end with me on the bottom of a pig-pile. I remain standing. Dec says: "Well. I'm going to play in the tree house." He's not upset, more matter-of-fact. Dash and I "garden" which means we kill plants slowly and with great precision.
Reading that night, they're both close. We're reading a book where a frog has to decide whether to read or play. I ask Dec: "Would you rather read or play?" Dash says: "Hey Declan! What about 'watch tv'?" Dec says: "If 'watch tv' is a choice, then I'd rather watch tv." Dash says: "Me too. Daddy, that's my favorite thing to do in all the world." Dec agrees.
I laugh so hard my head hurts again. We give these kids one hour of TV a day and you'd think it was the only thing they did.
Having the kids back helps so much. I was worried beforehand, wondering if I could handle the motion. Sometimes, I do have to look away, it's true. But kids don't care how you've changed. They want you to love them so much. It's easy. It's the easiest tough thing in the world.
I don't tell my kids the details. Somehow, I let slip that I was in the hospital. Declan picks up on this immediately (he knows something's up). "You were in the HOSPITAL?" he says. "Yes," I say, "I needed to go there to check on something in my heart and head." I can see the wheels turning in Dec's head. He's putting things together, not coming up with a straight answer. I almost SEE him wonder: "Why was I at nana and papa's with daddy in the hospital?" But he doesn't ask the question. He turns away, picks up a train.
Should I have tried to explain more?
August 14thStrokes teach us that life is fragile and sacred. But strokes also show us that life can be downright ugly. Strokes say to us: "You think you tough? Try this!" Strokes lay us low. They're also steely-eyed. Strokes don't care how we react or how sad people are. Strokes are death's cousin. They are thoughtless, emotionless and unblinking.
It's our reaction to a stroke that matters. Before my stroke I was a lover of life. I love it! Don't want to change it! Don't want to leave it!
Since Monday, I had grown very unsure. In fact, I had fallen out of love with life. There were more than a couple times when I had thought: "If I'm going to go now. Let's get it done." If life meant continuing like I was, then I wanted no more of it. I wanted to walk. I wanted to not throw up after making it to the edge of the bed. I wanted to not be amazed at people walking by (SO FAST!). I wanted for my head not to hurt. I wanted a bunch of basic things and if I didn't get them, then life wasn't worth it. I didn't feel cheated. I didn't say: "Why me?" I had had so much good in my life, frankly, I was due for a rough patch. I simply was tired of my aching head and the spins. I no longer loved life and didn't care if life left me or not. Good riddance.
Today I fell in love with life again. I was so happy because I fell back in love with life while I was with Monica. Since I love her so much, this felt great. The big epiphany came at Ocean Beach. When I woke I said: "Hey. Let's go to Ocean Beach for a walk today." It was sunny, very windy, but warm behind the dunes and in the sun. White caps multiplied like double-helixes on the surf. Man! I love that view. A red speck of an oil tanker sat on the horizon. "I can't believe I live here!" I shouted over the wind. Mon said: "You're welcome!" Smiling, because she's the one who convinced me to move here.
In this instant, I fell back in love with life. And life welcomed me back! Life said: "Hey no hard feelings! I know you can't see anyone else!" Life is great. We're back together again. I'm never leaving and I'm sorry about all those dumb things I said while throwing up in the hallway. Life is sorry too, sorry about the stroke - but hey - I can walk now and the spins are fading. Head still hurts but it's manageable.
Today was the first day of my recovery. Today I decided I would not die from a stroke - at least not today.
From a medical perspective, it's interesting to note that the brain stops swelling 72 hours after a stroke. This may have coincided with the very instant that life and fell back in love.
August 13thSleep. Wake. Sleep.
The mirror in the bedroom scares me. I sit on the edge of the bed and watch myself spin. Around I go. I grab both sides of the hallway and head to the bathroom. I rush to the kitchen to get a pot. Mon isn't home when I take a shower. I plan it this way. I don't want her to hear my cry in there.
Today we see the neurologist, Dr. Fernando Miranda. I like this guy. He gives the straight story. At the beginning of the meeting, I'm still thinking that I may not have a stroke. Dr. Miranda chuckles: "You have had a large stroke, my friend. Look at this!" He shows me the scan of my brain, with a large, grey cloud in the bottom-right section. "You don't even need a medical degree to see something's drastically wrong here!"
I officially name my stroke "Mr. Bad News."
We talk through the options, and my history of migraines. He says: "You also have had a smaller stroke earlier in your life. But we'll talk about that next week when you're better. Let's focus on the big one now." He explains how I'll have trouble turning left and with objects on my left. This is because the stroke affected the right-hand side of my cerebellum.
When I leave his office, he grabs my left elbow. This feels FANTASTIC! It's like the world is suddenly set straight on its axis. Wow! What a feeling. I fall in love with this 3 1/2 foot genius and say: "Wow. That feels good." He laughs: "I knew it would." I tell Mon: "Please hold my left elbow when you feel like it."
On the way out, I see the kids section of the waiting room: "Thanks for setting up the toys for me!" I shout. The admins smile at me. They all looked a little freaked out by me. I'm this man who can barely walk and who looks around, holding on tightly to the couch, saying: "What floor are we on?" They smile.
Mr. Bad News.
August 11thI wake up in the hospital room. The nurse comes in smiling. "You have low blood pressure!" She shouts. I think: "I'm not DEAF, lady." The corner of the bed jumps up and down. Spins.
More tests. Things are foggy. Some tests I remember, others not too much. Lots of MRI's (two, I think). Lots of wheel chairs. I cover my face when I ride in the wheel chair, like I'm some self-conscious rock-star. I simply cannot believe that I'm getting a ride in a wheel chair, or, more importantly, that I would NEVER make it to my destination without being wheeled there. I'm ashamed. I'm tired. Is this just a pre-cursor to death?
Mon arrives in the afternoon. She's all business. I can tell she's scared of me like this. I barely talk. No stories to tell. She takes me home. In the car, I cover my eyes.
August 10th 2009 - Day of Infamy
Today starts differently, right off the bat. Maybe I should pay attention, but I don't. I don't have the two bucks in change for the MUNI ride downtown and I have to get in early. I head up the hill to Henry's and buy a cappuccino. It's an early start for me, I'm on my way to the 23rd avenue stop at 6AM.
I feel 10 feet tall. Interesting note: most migraine sufferers have a stage in their migraine before the headache called the aura. I have this usually pretty bad. This morning, it's more of a feeling. I. Feel. Ten. Feet. Tall.
The morning goes well, meetings, getting things in line. We're working up to a pretty big proposal and there are bumps in the road. 2PM is my big meeting. The account team for a large customer wants me to present on our new service offerings. While my presentation is not yet squeaky clean, it's close. I can dance through the rest.
I finally get a room reserved, but I don't have a projector. Patrick from facilities rolls his eyes at me: "Today? With all these planning meetings, I'm not sure I can get you one... Hang on. Follow me!"
I round the corner of cubicle farm, take a sharp left turn and everything spins. Who put the ice pick in my head? Who flashed that blind spot? The room spins. I'm not talking he-he-he-I've-had-three-beers-on-Friday-aren't-I-just-a-rebel-Dad spins. I'm talking hands and knees on the floor, cannot open eyes, sprawled in some Spiderman stance. floor feels upside-down spins.
"Patrick," I say, "I need some help."
He's on it. After a few more minutes of talking Patrick to death about my symptoms, the paramedics arrive. These guys are good, intense. Two of them ask me questions, while one watches me, typing on a tablet pc. I tell them: "I'm pretty sure this is inner ear vertigo, my brother had it." They seem happy with someone who can self-diagnose.
The problem is, of course, that I'm wrong.
At the ER, Dr. Deb doesn't buy my "my dad was a doctor so listen to me pontificate" pitch. She says: "Your head hurts? Let's get a CT scan and put you on some migraine stuff." "Ah," I say, "I don't like taking aspirin, let's skip the IV." The nurse, Russell, a big Texan, shakes his head. "Sir," he says, "Let's not be non-compliant."
I give in, mainly because my head really starts to hurt. I call two of my brothers, tell them not to worry. Deb comes back: "Your CT has something, just a little something we're not sure yet."
They hit me with Benadryl and the rest of the night I'm wheeling from one room to the next. I think something's wrong. The tests are numerous. I begin to worry, then forget, then sleep.
Later, I'll write the email to friends below.
Hello friends, family and colleagues,
What you are about to read may surprise you. The news certainly surprised me and Monica. If you’re drinking coffee (or beer) take a couple swigs before reading further. The most important thing to remember is that I am alive. I can talk, walk (with some difficulty) and can still play music. I also wrote this email myself, although it took a while (and some help from Mon).
August 10th – day of infamy
I was preparing for a meeting at the Microsoft office, following Patrick from facilities management, to get a projector, when suddenly everything spun. My head hurt like you would not believe. I could not stand, but I maintained consciousness and could speak throughout the entire ordeal. I was laughing with the paramedics and joking about excuses to get out of the meeting. It was great to see my teammates (Jeff, Jeremiah, Eileen and Atul) there looking after me). I laughed: “Look what you guys did to me!” I really thought this was no big deal. I thought it was benign inner ear vertigo, something my brother Grant had experienced.
At the ER, I was trying to explain my symptoms and get out of taking all the medication the doctor there wanted to give me. Dr. Deb (a good woman) said: “Listen! Your headache really worries me. And you’re spinning hasn’t stopped in over 4 hours. We’re getting you a CT scan.” She’s a good doctor. After this came many tests and two days in the hospital.
I have had a stroke (focal lesion) in the lower right-hand side of my cerebellum. (I am told by professionals that this the best place to get strokes). It is 4 by 5 by 5 centimeters in size (the neurologist said: “pretty damn big”). The cerebellum helps us balance (more on this later), which explained my dizziness. There’s also fascinating stuff. Since the right-hand side of my cerebellum is affected, left-hand turns make me swoon. Also, if I close my eyes and stand still, I’ll sway over to the left. Crazy stuff They are still running tests on genetic blood deficiencies, but the cardio and neurologist both think it’s PFO. This is basically a small hole in my heart that caused the clot to go to my brain. I’m currently taking aspirin and the blood thinner Plavix.
How am i?
I walk slowly. I mean. Slow. Slow. Slow. Snails zip by me and said: “Hey dude keep to the right!” My head hurts. As far as balance goes, I feel, essentially, seasick. I am also very tired. My brain is asking my cerebellum: “Everything OK on the left?” And my cerebellum says: “I’m givn’ er all she’s GOT capt’n!!! Half this place is blown to hell!” Today I sat in the back-yard and enjoyed the breeze. Tomorrow I’m going to walk up to the top of the hill.
Mon and I are taking it slow. The boys are at nana and papa’s place. We’ll see them Saturday! Otherwise, I’ll see about work and getting back to normal, but the estimated recovery time is 30-60 days. The doctors strongly suggest I have the PFO fix done, but that’s in the future.
There’s no need to run out and call me, but you can always reach me at 415 665 5210 or on the mobile 415 269 8454. I’m pretty exhausted and won’t always pick up. I also will not be checking email regularly.
Simon Donovan | Services Executive | Microsoft Services
|Simon Donovan -
your humble blogger
Dr. Moore - cardio cath surgeon
Dr. Merrick - cardio surgeon
Mr Bad News - nickname for stroke
Mr Crusher - nickname for Simon
Dr. Peter Teng - cardiologist
Dr. Fernando Miranda - neurologist
Dr Richard Ivry - professor Berkeley
Monica ("Mon") - wife
Declan ("Dec") - eldest son
Dashiell ("Dashi" or "Dash") - youngest son
Adam - friend
Cortney - friend
Dan - friend and doctor
Wellington - friend
Al and Deb - friends
Chris and Sara - friends
Drew and Kelly - friends
Ken and Christi - new friends
Charles - brother
Dr Levy - cardiologist, internist