At 57, I am now entering yet another phase as I age with spastic diplegic cerebral palsy, a fixed neurological condition affecting, in my case, mobility. More and more, I am experiencing the irritating, annoying and most assuredly painful implications of this lifelong condition. I am still uprightly mobile, much to the consternation of many around me who felt I should have taken a seat (use of a wheelchair) years ago. But I continue to stand and move, one clumsy foot at a time, at a cost—a cost to my physical comfort. I contribute to my pain so that I may maintain independence in my own home, in my own space, with my own stuff around me. Each day I wake and pray that this is not the day it’s all going to be taken away, though if it is, all will not be lost. One misstep—a drag of a foot catching on a stray piece of dog kibble, a hand missing a counter, table or chair that I sought for balance-and I could fall and forever and always be paralyzed, with an already acutely compromised spine suffering a permanent blow.
Then, believing they know what is best, a parade of specialists will attend to me: doctors of rehab medicine, orthopedic surgeons, physiotherapists, occupational therapists and social workers. They consult to develop a plan for me, but do they consult me? Perhaps in a very peripheral way because, after all, they’re the professionals. Therein lies the dilemma of growing old with a since-birth disability. We’re once again treated like the children we left behind years before. What is overlooked by the so-called specialists is that the aging person with disability is grieving—grieving a loss of independence, a loss of freedom. In their efforts to be helpful, those specialists, those professionals, unwittingly alter the landscape: “Let’s move her here.” “No, let’s move her there.” But I don’t want to move out of my home, dammit!
Jean Vanier, in Our Journey Home, writes, “Our task is not to shape reality, but to accept and discover within it a light, a new love, a presence. Many transitions that imply grief can become easier if we prepare for them and choose them, rather than allowing ourselves to become subject to them.”
Parents, upon learning their child is and will forever be disabled, are thrust into a transition, going from all those dreams for their child—baseball, soccer, ballet classes, figure skating, piano lessons and on and on—all those pursuits that require a sound body, to a place where challenges to the spirit and the will are the order of the day, not just for them as the adults, but also for the child, who must live a life of struggle. A child, until he is able to comprehend intent and action, doesn’t fully appreciate what “transition” means. He simply adapts to what surrounds him or, if that doesn’t work, adapts what surrounds him to meet what he lacks. Such was the way of things for the child I once was, one who grew up with, lives with and grows old with cerebral palsy.
I have been transitioning for some time. For the first 13 years there was daily physiotherapy at the hands mostly of my mother until I terminated her contract to put me on my feet. Then there was shuffling my way through grade school, high school and university. From there, I began doing what everyone else does: working, paying my own way. Often that work was designed to accommodate my limited mobility, to reduce physical stress and, most importantly, to provide me control, when for years I had so little.
While plotting my course to greater independence, which required the financial freedom that employment provides, I rediscovered a dormant gift: writing, which I had abandoned in childhood. God only knows why I left it behind. Then another major transition took place in my 30s: I got married. I was a late starter by the standards of the day, but for the next 20 years I got to experience the ups and downs of married life with a man who had to adjust his view of the world because of me. I taught him to appreciate the joy in solitude, in being still.
I was used to being still; I was used to solitude, but I was never lonely, because I was never alone. I had myself, then I had the companionship of a man who claimed to hate breakfast until I introduced him to my French toast, a man who saw beyond the spastic legs to appreciate what those legs moving around the kitchen were really doing—the moving here to there to there. Onion soup and French bread were created with hands—no feet required! My husband was charged with carrying the soup; I was not and still am not able to carry soup in a bowl. He often told friends that carrying soup in a bowl was one of the few things I could not do. I tried once and it most assuredly was not pretty! ...
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by Carla MacInnis Rockwell