“I regret to tell you that you’re going to be in a wheelchair, now that you had six falls in the space of four years, until you build up your leg muscles,” said the social worker, who was surrounded by a physical therapist, an occupational therapist, my caregiver, the nursing coordinator, and a student nurse who was looking sorrowfully at me.
I thought the social worker was smug and must have said those words to other stroke survivors, and actually eleven falls in three years, to be precise, and I scoffed at the idea. Me, in a wheelchair. I was using the cane at the time, but with every fall, I regressed in my ability to walk, and my narrative followed.
“I just want to be where I was before the fall,” I pleaded every time. But every time, my ability to walk was further back than it was the previous time.
“It will be safer,” the social worker continued. Safer, a favorite word of every PT. Nobody asked me if I’d rather be safer. Maybe I don’t want it to be safer, I thought, obstinate, stubborn to a fault. Maybe I’ll take my chances, see where things end up.
Fast forward five years. I’m still in the chair, actually a transport chair, which a person behind me has to push once my legs get tired after 10 minutes of propelling myself.
But when I took yet another ambulance to the Emergency Room and needed thirty stitches to close the tear on my good leg right down to the joint after hitting my leg on the dresser which had sharp brackets, leaving behind a bloody mess in the bedroom, I knew, at that moment five seconds after the fall, I would have no more. No more of any of it.
While I was in the hospital for three days, three things happened. First, my son and my aide rearranged the bedroom where my leg could hit nothing. The dresser was moved to the opposite wall.
Second, I got a floor-to-ceiling which my younger son installed that helps me with both exercise and transfers.
And third, Sara and I founded Brain Exchange, exclusively for stroke and other TBI survivors to write ongoing emails in a 1:1 partnership which keeps me busy throughout the day and is helping me forget about the nursing home hellhole I was situated in for five weeks.
The renowned Daniel Gu who had a stroke, the founder of Strokefocus, developed the sign-in form and logistical meetings among Daniel, Sara, and me, and ever-pleasant Anne Tillinghast, who didn’t have a stroke, the musical director of The Backstrokes (a band of stroke and other TBI survivors of which I am a member playing keyboard, the others mostly string and percussion, singing and playing every week) assists the effort.
So all of this is to say, I’m better now, still having physical therapy at home, and thankful for the Thanksgiving that I will attend later today with my sons and son’s girlfriend.
I haven’t fallen for four months. Will I fall again? How the hell should I know! After every fall, I said it would be the last, and you see how well that turned out.