Sunday, October 26, 2014

Never Tell Me the Odds

For many of you, I probably don't need to clarify that movie reference. In fact, I probably don't even need to add that the possibility of successfully navigating an asteroid field is approximately 3,720 to 1. This time of year (the anniversary of my brain surgery, hemorrhage, craniotomy, and stroke [to borrow a term from someone at my support group,  my "craniversary"]) I do tend to get reflective and flip through my chapter in the Jewish Book of "Why Me?"

This year -- armed with some stats from the Brain Aneurysm Foundation and the recollection of my first neurosurgeon's mention that my long-stable aneurysm was 4% more likely to rupture with each passing year -- I took my fruitless contemplation to even greater lengths and started calculating probabilities of what has or could have happened to me.

I and a mathy friend (thanks, Wilk!) estimated the following likelihood of rupture had I taken no action to remove the squid (assuming a baseline risk of .5%, based on the BAF numbers):

Likelihood of rupture (uncompounded)
Likelihood of rupture (compounded)






I mentioned this was a pointless exercise, right? Depending on your risk tolerance, the odds don't look so bad; but it doesn't matter, because what happened happened. And if it was going to happen, I was certainly much better off in bed at the MGH ICU than falling to the ground wherever I happened to be. There's very little value in trying to predict all the ways our lives can go wrong, based on statistical analysis or neuroses. In my own private Hunger Games, the odds were ever in my favor.

Ignoring that reasonable perspective entirely, I also went back to a medical disabilty calculator I have access to at work and did some searches on my past and Jamie's upcoming procedures (tomorrow):


Estimated Days of Recovery
subarachnoid hemorrhage


Estimated Days of Recovery
28-42; 82.9 for a man
Hernia repair

Mind you, these predictions are all based on return to work for a "sedentary" occupation (more true for me than Jamie); and ability to work is only one definition of disability.  Case in point, me: The Americans with Disabilities Act defines Disability very broadly as, " a physical or mental impairment that substantially limits one or more major life activities, including major bodily functions such as the functions of the immune system; has a record of such an impairment; or has an actual or perceived mental or physical impairment that is not transitory and minor."

By that definition, I am disabled when it comes to driving and parking but not working. Not to mention what a sticky wicket the "perception of impairment" is.

The calculated days of disability can be adjusted based on age, gender, and geography (I can't tell you how many times I was told my relative youth was an advantage), though I think family obligations should also be factored in. When Jamie looks at these numbers, she's determined that failure is not an option, and I know that sense of responsibility encouraged me to get back to work within nine months. On the other side of that coin, Jamie keeps recounting a story she heard once about a single mother who opted for time in jail over paying off old parking tickets, just to get away from her kids for a few days ("three hots and a cot").

I don't want to be defined by my disability, but I know I've come to identify myself as part of the disabled community.

Terms like "Handicapable" and "Differently Abled" used to seem saccharine to me; now I'm trying to come up with my own:  Misabled, Deabled, Reabled, Creabled, Crumbled. Anyone? It's interesting that in golf, a handicap is intended to even the playing field. I guess my handicap would be a 72, so -- as in War Games -- the only winning move is not to play.

The Recovery Curve

Another critical piece of data served to me in the hospital was a fuzzy graph of stroke recovery progress, showing that improvements tended to "plateau" (another way of saying there's nowhere else to go) after one year. I know that suggestion made 2010-11 especially stressful for me and my family. And while Year One did get me home, back to work, and walking, Years 2-4 have been far more accomplished in that they've shown me the flaw in the very notion of "recovery," because it is predicated on the faulty bias that I was in a pedestal-worthy state pre-stroke and that the true measure of progress is a return to "normal". While it is true that I feel safer having balanced my center of gravity and healthier about my improved stamina (though I still have plenty of mental fatigue), my real sense of physical satisfaction comes from my improvement in putting on coats; walking without a cane and carrying things; and just generally doing things one handed (is "compensation" functionally the same as "recovery"?). Not to mention that beyond the one-year plateau, I got my driver's license back, did the Maine Brain Aneurysm walk,
and started using my injury to educate others (speaking at last year's Maine Brain Injury conference, participating in a panel discussion this year), becoming a member of Brain Injury Voices, joining the  board of the Brain Injury Association of Maine, and having the privilege of speaking recently to a University of Maine class on the psychology of disability).

I don't know that I can quite call it progress, but I've also gained back all the weight I lost in the hospital -- plus forty pounds (I carry it mostly in my artistic integrity).  What else? I've also developed a bit of an online shopping habit

So, hokily, I'd say the past three years have been about moving from recovery into discovery. There are times I'm actually glad this has happened to me, for the people I've met and the purpose it's provided. Take that, Plateau.

Now What? 

I've had some setbacks this year on social and work etiquette. So I know I've still got a ways to go. I'm very happy with my volunteer and advocacy work and hope to expand that. And then there's always the Unknown. I'm still curious about how my brain has rewired and/or healed and would like to get a picture of that, either by fMRI or Brain Mapping. I also might try out the MindWave.

Of course, much of the Unknown has nothing to do with me, as we await the outcome of Jamie's surgery. We've done our best to prepare: Jamie's mother will be staying with us for awhile, I've set up a separate blog and planner space here, and the boys and I have been practicing our bedtime and morning readiness routines.

Problem is, Jamie runs a tight ship and I row a pretty leaky dinghy, in a circle. Our focus has to be on reversing our roles a bit: Helping her, helping each other, and helping ourselves. And she's going to have to let us. The only certainty is change.

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