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!
I introduced my husband to fruit smoothies prepared with homemade yogurt, to Greek this and Italian that. Cooking and baking were talents I developed not out of necessity but because they were therapeutic—not only in the preparation of distinctive breads and vegetables, but also in sharing the fruits of my labor with others. He and I enjoyed a common interest in books and in music and a love of old movies.
During my marriage, my husband, though older, didn’t experience the same health issues as I. He was, however, witness to disturbances in my mobility and balance, a couple of worrisome cardiac events, then the diagnosis of fibromyalgia, a connective-tissue disease in which genetics plays a role. (In fact, a brother and sister of mine have rheumatoid arthritis, with that same sister having lupus.)
Still, I didn’t sit down. I must have been crazy or simply so tenacious that I was bent on proving I could “do it.” The pain that was often etched on my face was testament to the fact that moving was becoming more and more difficult. With each step it hurt to breathe. But I did it. I had to.
More than once, my husband practically screamed at me to stop, to slow down, to sit down. The headaches became more frequent, but he massaged away the tension. The searing pain in my neck and back were sometimes unbearable, and I would take to our bed for a few hours. Sometimes every day I took a nap, but I hated it. Naps meant failure. Defeat. Resignation.
I couldn’t resign. Through all of this I took no drugs. Drugs made me mentally dull. I couldn’t walk, let alone write if I was stupefied with pain medication. After much research and trial and error, I found a protocol of vitamin and mineral supplementing, along with alternative medicine, that worked well. I was back on track and feeling well, at least able to tolerate the subtle changes that were signals to decline. But I hadn’t hit bottom yet. The goal was to stay afloat, whatever it took.
Several years passed, and my husband and I found ourselves reaching our 20th year of marriage, with neither of us ever giving thought to that year being our last together. He was diagnosed with a very rare cancer and was taken to hospital within weeks of my birthday. There he would stay for almost five months, until he passed away. I was alone with myself and an elderly dog, a 16-year-old cairn terrier, who thankfully got to see his daddy one last time after the palliative care staff insisted the dog be brought into the hospital. Nurses and a few doctors stood in the doorway of my husband’s room to witness the reunion. All had tears. I have photographs of the scene, of dog and master. Within two months, the dog was gone, too. I suspect the dog’s passing was hastened by his own grief. Shortly after both my husband and our canine companion passed away, I couldn’t look at the photos without collapsing in a puddle of tears. Now I can look at them and smile.
A huge transition would define the next phase of my life. I was physically on my own but still not alone. I had myself, just as before. I would always have myself.
The good doctor pays a call. A directive is issued: take all requisite medications as required. Early on, it became clear to him that I was never going to be a compliant patient when I knew compliance would compromise my mobility. He didn’t know my body and he respected the fact that I did. That was important to me, and I’m going to be so distressed when he finally hangs up his stethoscope for good as I’m not a fan of the corporate style of medicine that’s practiced today. To maintain the quality of health I’ve enjoyed for many years, I may buy stock in a few Scottish distilleries and have my special “medicine” shipped in on a regular basis.
I’ve been on my own for almost four years, and there have been many changes in my mobility. I know I’m getting clumsier, and I truly hate it. I must rest more and more, and I feel like I’m sleeping my life away. I hate that, too! During those blocks of time when I’m energized, I bake and cook in bulk to ensure that I eat well each and every day; proper nutrition is critical. I continue to watch—and invariably fall asleep during—all those British dramas my husband and I enjoyed. I expect I will always enjoy the mental aerobics online Scrabble provides. (“Crumbles,” crossing two triple word scores for 179 points was my greatest play.) Scrabble board open, word-processing program open, browser open with an array of newspapers at the click of a mouse—do I need a strong back and moving legs to enjoy those things? No, I do not.
My message to parents as they raise the infant with the flailing limbs and the Raggedy Ann body is this: don’t be disheartened. You have been charged with guiding your child through an array of transitional phases of life until he is ready to go it on his own. Things do get better. If your child never walks, never kicks a soccer ball or never executes a perfect plié or plays piano concertos at Carnegie Hall, don’t forget there are other dreams— the son who goes to law school and fights on behalf of those who have no fight left, the daughter who studies medicine to research the causes of the condition that challenged her own toddlerhood.
Am I prepared for the next transition? Getting there slowly. Will I be happy about it? Probably not, but I’ll press on, one stumbling step at a time until I decide that I can step no more and sit myself down—but not out! Never out.
by Carla MacInnis Rockwell