Monday, May 25, 2015

A Stroke of Luck

When I was fourteen or fifteen, I wrote an O. Henry-esque short story called, "A Stroke of Luck". Set in the early Twentieth Century, it shared a wealthy man's recounting to his barber about the day he was inspired to make his fortune in the newborn aerospace industry after hearing hawkish cries of, "Buy plane, or you're nuts!" out on the street. Upon leaving the barber, he curiously hears the very same call. He follows the sound and is led to a small candy shop, merely promoting its sale on plain chocolate (Oh, the irony!).

Yes, it's horrible, but that tale -- confected on the phone while helping a friend spitball ideas for a story she had to write -- was my one of my first forays into literary competitions and the label, "writer" and won me a trip to the state capitol to meet Governor Thomas Kean (R-NJ, 1982-90), chaperoned by my ninth grade English teacher and crush. Good times.

That chapter of my life and how that story's title has been turned on its ear by the events of the last five years (Oh, the irony!), was evoked by my recent attendance of a stroke conference at the University of Southern Maine, which reminded me of both how fortunate I was to have been where I was when I had my stroke (in the Massachusetts General Hospital Neuro Intensive Care Unit, as opposed to my living room) and how much I still struggle with the aftermath of that event. Much of the conference -- primarily designed for medical professionals -- centered on education about immediate intervention for emergent care givers. Generally, I have not been drawn to advocating for prevention measures or education around recognizing when someone is having a stroke because I had a hemorrhagic stroke (caused by bleeding), not an ischemic stroke (caused by a blood clot blocking blood flow to the brain). So my prevention pitch goes a little like this: "Don't get an aneurysm; don't have brain surgery". It's certainly not that I don't empathize with anyone who's had an ischemic stroke (in fact, according to one surgeon who reviewed my MRI pre-surgery, it's possible I did have undiagnosed strokes caused by clotting in my aneurysm).  Sharing Brain Injury Voices' table at the conference with Maine Brain Aneurysm Awareness, I certainly felt the poster child for The Cautionary Tale. I also fit the description for another theme at the conference: "Young" strokes (depending on who you ask, covering ages 18-65). That's a categorization I've struggled with in part because being a youngish stroke survivor brought with it some high expectations for improved recovery. Whenever I see other young survivors, it's hard not to compare my recovery to theirs (two speakers had ischemic strokes in their twenties and eloquently told their stories while gesturing with both hands (something I cannot do). Then I have to remind myself that every stroke is like a snowflake, every recovery yet another. I learned a lot about the difficulties a young person suffering a stroke may have just getting first responders to recognize the symptoms when they take place in an unexpectedly young body (especially one that isn't stereotypically overweight and linked to cardiovascular disease). I learned that there's actually a Stroke Belt in the Southeastern U.S., tied to those sorts of health risks. I also realized the stigma of ischemic stroke has led to a subtle bias on my part, whereby I always preface telling of my stroke with,"...after brain surgery to clip and remove an aneurysm...", lest someone get the impression I brought it on myself through poor diet and lack of exercise. Blame is lame. Or that I somehow haven't done enough to fully recover from my stroke (something else I get to beat myself up about on an ongoing basis). Jamie was kind enough to point out that she was told that along with the stroke, I had to battle the consequences of swelling in my brain. Much as I appreciate the excuse, studies actually show that while there's higher mortality with hemorrhagic strokes, recovery tends to be better. So I'm beating all the odds by surviving the event and refusing to regain fine motor control. But recovery is subjective. That's been my biggest lesson nearly five years out: defining a satisfactory recovery has less to do with reclaiming former abilities than with finding the right balance of ability, adaptation, and letting go/moving on. In that way, I'm very lucky.