Editor’s Note: Some may call it courage, while others call it stubbornness. Regardless of your perspective, Carla MacInnis Rockwell chooses to face her condition in a manner affording the most independence and clarity of mind—despite the fact that this path rejects many of the conventional protocols that make life with cerebral palsy more tolerable. “Transitions” reveals Rockwell’s perspective on living with disability in her own words. As the circumstances of her life evolve around her, new challenges posed by her aging body and the progression of her condition continually threaten to extinguish the very ideals she values most. And yet, time and time again, she chooses to meet them head on—on her own terms.
At 57, I now enter into yet another phase of aging with spastic diplegic cerebral palsy, a fixed neurological condition affecting, in my case, mobility. More than ever, I experience the irritating and most assuredly painful implications of this life-long condition. I am still uprightly mobile, much to the consternation of many around me who feel I should have taken a seat (in a wheelchair) years ago. But I continue to stand and move, one clumsy foot at a time—at cost to my physical comfort. I contribute to my pain so that I can 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 was, all would not be lost. One misstep—my foot stumbling on a stray piece of dog kibble or my hand slipping on a table or chair meant for balance—and I could fall and forever be paralyzed. I will not, however, fixate on what could happen, for it’s possible that it may never be—at least not for a very long time.
Parades of specialists 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? Therein lies the dilemma of growing old with a since-birth disability. We’re once again treated like a child—even though we left that mindset long ago. The so-called “specialists” overlook the fact that the disabled, aging person is grieving—grieving a loss of independence and freedom. In their efforts to be helpful, those specialists unwittingly alter the life of the patient.
Jean Vanier, author of 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 an immediate transition and are often unable to acknowledge their grief. They suffer a loss and upended dreams for their child. Baseball and soccer games, ballet classes, figure skating, and piano lessons are all pursuits that require a sound body and spirit. Now, adults must guide the child in a new direction while still managing their grief for the child, who must live a life of struggle and cannot lead a carefree and fun-filled childhood. A child 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 in terms of accommodation. It was similar for the child I once was, who grew up with, lives with, and grows old with cerebral palsy.
I have been transitioning for some time—for the first thirteen years of my life, there was daily physiotherapy, mostly at the hands of my mother, until I terminated her contract and shuffled my way through grade school, high school, and university. From there, I transitioned to doing what everyone else does—working and paying my own way. Often my bread-and-butter earning situations were self-created to accommodate my limited mobility and to reduce physical stress, but more importantly, they were created to give me control when, for years, so little was granted to me.
While I plotted my course to greater independence, which required the financial freedom that employment so obviously gave, I rediscovered a dormant gift—the gift of writing abandoned in childhood. 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 of being still. I was used to solitude and being still, but I was never lonely because I was never alone—I had myself to keep me occupied. 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 leg movements and appreciated what those legs were really doing—moving me around the kitchen so I could make onion soup and French bread. These were tasks that I could do with my hands; no feet required! My husband was in charge of carrying the soup; I am still 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. Cooking and baking was therapeutic—not only in the preparation process, but also in sharing the fruits of my labor with others. We enjoyed a common interest in books, music, and a love of old movies.
During my marriage, my husband, though older, didn’t experience the same health issues as I did. He was, however, a witness to disturbances in my mobility and balance, a couple of worrisome cardiac events, and my diagnosis of fibromyalgia, a connective tissue disease. Still, I didn’t sit down. I must have been crazy, or simply so tenacious that I was bent on proving that I could do it. The pain 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 would practically scream at me to stop, slow down, or sit down.
The headaches were more frequent; he massaged away the tension. The searing pain in my neck and back were sometimes unbearable, and I would go to bed for a few hours every day to take a nap. 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 supplementation, along with alternative medicine that worked well. I was back on track and feeling well enough to at least tolerate the subtle changes that were signals of 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 reached our 20th wedding anniversary. Neither of us ever gave thought to that year being our last together; he was diagnosed with a very rare form of cancer and was hospitalized within weeks of my birthday. There he stayed, for almost five months, until he passed away. I was alone with our elderly dog, a 16-year-old Cairn terrier, who thankfully got to see his master one last time at the hospital. Both doctors and nurses stood in the doorway of my husband’s room to witness the reunion—all had tears in their eyes. Within two months, the dog was gone, too. I suspect the dog’s grief hastened his own passing. For a little while, 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 spiritually I had myself, just as before. I would always have myself.
One day, the good doctor paid a call and issued a directive to 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.
I’ve been on my own for almost four years and my mobility is changing. I know I’m getting clumsier, and I must rest more, which I hate. 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 through all those British dramas my husband and I enjoyed, and I will always enjoy the mental aerobics online scrabble provides. Scrabble board open, word processing program open, browser open with an array of newspapers at the click of a mouse—do I need a sound back and moving legs to continue to enjoy those things? No, I do not.
My message to parents as they raise infants with cerebral palsy is not to become disheartened. You have been charged with guiding your child through an array of life’s transitional phases until he or she is ready to be on his or her own. Things do get better. If your child never walks, never kicks a soccer ball, or never executes a perfect plié, don’t forget there are other dreams; there are dreams for the son who goes to law school and fights on behalf of those who have no fight left and dreams for the daughter who studies medicine to research the many causes of the condition that challenged her own toddlerhood.
I am slowly preparing for my next transition. Will I be happy about it? Probably not, but I’ll press on, one stumbling step at time until I decide that I can step no more and sit myself down—but not out! Never out!
Transitions are a part of life, and I am still alive and living and enjoying!
Nutrition for Life
Carla shares helpful dietary tips for those living with a disability.
Regarding diet and nutrition, I, like most with cerebral palsy—young or old—have what is called “failure to thrive.” I couldn’t gain an ounce if you paid me. I eat like three lumberjacks and three farmers!
When I was a child, my mother gave me a milkshake made with instant-breakfast powder, fruit, and ice cream along with my meals to help put on weight. It didn’t work.
Today, I eat what I call “staggered meals.” Breakfast is oatmeal with homemade cran-raisin applesauce, a cup of yogurt, and a banana. Then I do a bit of tidying around the house. Within an hour of the oatmeal, I’m eating poached eggs on homemade multigrain toast and maybe some bacon. A few hours later, it’s chicken Caesar salad with homemade croutons (lemon-herb are a favorite). Between 6 and 7 p.m. I have dinner—often fish or chicken along with three or four veggies and rice.
First thing in the morning, and either immediately before or immediately after dinner, I take a B-complex vitamin, a kelp tablet, and a magnesium oxide tablet. That trio ensures that I am energized through the day. I take them at night so I don’t sleep the evening away. The kelp tends to jump-start a sluggish thyroid. Though I present a classic sluggish thyroid based on symptoms, a full panel of thyroid tests suggest there is nothing clinically wrong. My doctor wanted me to try Synthroid, but I opted to go with kelp tablets—so far, so good! The magnesium oxide controls both the tachycardia associated with grade-two aortic insufficiency, in addition to controlling the muscle spasticity of the cerebral palsy and the joint and muscle pain of fibromyalgia.
Over a typical weekend, I might roast a chicken, then roast the bones for bone broth. Have you read the literature on the benefits of bone broth? I’ve been making broth from scratch for years. The canned stuff doesn’t come close! A splash of wine beautifully finishes a slow cooker full of bone broth: One for the pot and one for the cook. Truly a wonderful medicine for whatever might plague a body.
Counter-top appliances are far safer for me to use than the traditional oven. Later today, for example, I’ll be making a batch of yogurt. Normally, I incubate in my 8-cup yogurt maker, but today, I’m incubating in newly acquired Pyrex, 1-cup glass containers. Four hours in the micro-convection oven, set to 100 degrees, and the yogurt will be ready for the fridge.
As you may guess, nutrition is only one facet of living life with cerebral palsy. The desire to preserve my independence has pushed me to examine many areas of my life. Each year, because I am a pet owner, I undertake an internal parasite cleanse. For dental care, the benefits of homeopathic plaque softener are significant. Persons with cerebral palsy typically do not tolerate dental procedures, given most of us have an exaggerated gag-choke reflex. Thankfully, I don’t rely on sedation dentistry to accommodate my situation. Exercise is also important. Today, I still do a lot of those same exercises that therapists performed “on” me as a child, though in a modified format. Many parents of children with spastic diplegic cerebral palsy use my protocol.
Within the links of Carla’s Place (home.netscape.ca/~terrier) I share my strategies for living and aging with cerebral palsy. Please come and visit!