Dropped Threads 2: More of What We Aren't Told

by Carol Shields

  Welcome to my weekly Aquasize for MS class. I was diagnosed with multiple sclerosis about fifteen years ago. The orders my brain issues to my errant body misfire and lurch down nerves scarred where their protective sheathing has worn away. My body, which is supposed to be lithe and beautiful in its feminine prime, is mere ballast outside this pool. I am in my mid-forties, but I totter and stumble through life like one of those frail women in her mid-eighties we used to see timidly teetering along the aisles of the old Eaton’s. I walk on invisible stilts; the mere flapping of a butterfly’s wings a mile away will inexplicably upset my precarious balance. My hands are muffled in oven mitts; my handwriting has deteriorated to an awkward scrawl that even I can no longer read. My mouth is filled with marbles; the words I try to enunciate come out rattled and slurred.

  It wasn’t always like this. I used to swim laps, ride bicycles and dance until I dropped. In the flush of youthful conceit, I used to stride about with never a thought for the simple task of locomotion. I took my body for granted, assumed it would pilot me on an adventuresome course through life. However, the hazards of unseen geological events have detoured my route. Yawning, volcanic fissures often split the sidewalk, mountain ranges dredged up by the snowplough appear along winter streets and giant rolling hills emerge from a buckled carpet. Daily life with chronic illness has become a course in extreme adventuring.

  It is some small consolation that I am not alone. I know there are thousands of victims of chronic disease who, like me, muddle along trying to figure out how to live a life largely defined by its losses. My medical encyclopedia lists with numbing repetition how chronic illness—usually auto-immune disease—affects women more frequently than men, and typically in the prime of their lives: arthritis, irritable bowel syndrome, scleroderma, systemic lupus erythematosus, fibromyalgia, chronic fatigue syndrome, seasonal affective disorder and my own personal brand of disability, MS.

  I wish there were comfort in the sisterhood of the sick. But even if there were, I still would yearn to fit into a society that doesn’t really have a place for me. It’s a society that celebrates youth, beauty and sexiness. The ugly walking shoes and the unsightly industrial canes that are the backdrop of my life are a reminder that someone whose body is flawed by chronic illness has no business thinking of herself in those terms. Our society also expects a woman to be the chief caregiver, the one who kisses the skinned knee and applies the Band-Aid. What happens when it is the caregiver who needs the care? And in a society that encourages women to “do it all,” a woman is also supposed to be the household manager and a productive member of the working world. How can I be a part of this world? I have no children and no job, and I have always been an unenthusiastic housekeeper.

  I remember how life with my illness began. I was in my early thirties, with a new husband and a stimulating job as a television reporter. My life was ordinary in every way. Like many other women, I had walked down the aisle, gone camping in the rain, backpacked through Europe. But then I began to feel an odd tingling in my hands and feet. On the courts, my racquet missed the ball more than usual. I was curiously dizzy as I tried to write my TV scripts in the passenger seat of the CBC van as the camera operator raced us back to the station. Stress, I thought, in that familiar chorus of dismissal. But then came the day when my weekly game of racquetball fell apart completely. Not only did I lose—which was indignity enough—but I collapsed. My hands and feet simply refused to obey the commands I issued.

  My neurologist knew something was wrong when he called on me to do a simple dexterity test. My task was to touch my finger to his and then touch my nose. I managed to reach his fingertip just fine, but the return trip was more problematic. I stuck my finger directly into my eye. That triggered a round of those high-tech tests with the peculiar acronyms. And then came the diagnosis. “It is not fatal,” the doctor said, no doubt thinking he was passing on good news. He told me MS was an incurable chronic degenerative disorder of the central nervous system in which the myelin sheath that coats the nerves like insulation on a wire is eaten away and replaced by scar tissue that interrupts the nerves’ signals. The menu of symptoms I could expect included pain, malaise, fatigue, dizziness, numbness, slurring, tremours, lack of co-ordination and balance, visual problems, paralysis, loss of bladder and bowel control, sexual disability and maybe cognitive dysfunction. He told me the disease could be virtually benign or could put me in a wheelchair for life. It could come and go or it could relentlessly progress. We would know its course better in about five years. “Good luck,” he said.

  After those not-so-consoling words came the assignment of learning to live with the solitary reality of chronic illness. At first I thought about it incessantly, worrying about the unpredictable nature of the disease, wondering if I would be able to walk the next morning. But that grew tiresome. MS didn’t land me in hospital or a wheelchair. Instead, it became my private torment, something I was unwilling to share with my employers or my acquaintances.

  Five years later, I still walked the four blocks to work, though I arrived sweaty and exhausted. I still lived in a two-storey house, though I had to clutch the handrail going down the stairs. But I felt it could have been so much worse. I played the Pollyanna Glad Game. Oh, I’m glad I’m not in a wheelchair, I thought. I can do this.

  But there were inevitable costs. Five years of limbo, of marking time, ruined the chance of having a family. I hadn’t wanted to saddle my husband with children if I should be too disabled to play a full role in their care. By the time we had both adjusted to my illness, most of my thirties were behind me. We could not defy nature. I was fated to look at other people’s children playing outside the front window. I would never hold a newborn of mine in my untrustworthy hands.

  The next casualty was my job. By then I was a documentary producer and I had convinced myself—and my bosses—that I was doing okay. But all that self-deception collapsed when a friend told me a colleague of mine had asked her if I had a drinking problem. A few days later, while I was on an out-of-town shoot, a farmer bluntly asked me what was wrong with me. I found myself sobbing uncontrollably. It was obvious that it was time to begin weaning myself off the working world. I started by reducing my hours. And then, with the guidance of a sympathetic human resources officer at the CBC, I finally admitted to myself I could no longer manage.

  Family, career—that’s how many women measure their self-worth. Those were now gone for me. However, the story of chronic disease is also told in smaller losses. It hurt that I had to give away my bike after admitting to myself that not even training wheels would help me keep my balance. And I hated having to abandon those early-morning neighbourhood jaunts with the dog. I finally recognized the problem was not that Brigadier couldn’t walk on a lead, the problem was I couldn’t walk on the other end of it.

  I have been spared those horrible attacks that some people with relapsing-remitting MS suffer. Instead, my version of the disease has seen a slow and steady worsening punctuated only by periods of crippling self-pity. These days, I have an uneasy relationship with my disobedient body. I can no longer sew on a button, pick up a toddler, or braid my hair. I walk with a cane, equipped with a macabre spike for Winnipeg winters. My eyes are cast down, focused on my feet and the sudden challenge a crack in the sidewalk or swell in the snow might pose. I pick my way down the stairs, clinging desperately to the handrail, legs wide for stability. I bounce off walls, miss doorways and smash into doorframes in a fashion worthy of The Three Stooges. I try to remember to laugh.

  Spontaneity has disappeared from my life. I visualize what I am going to wear, how I am going to get to where I am going and where the bathrooms are. Much to the toe-tapping frustration of my husband, it takes forever to fasten my jacket zipper or to tie my recalcitrant shoelaces.

  My adventures are small these days, limited to the unexplained falls that leave onlookers perplexed and me embarrassed. Like the other night at the dog park when I unceremoniously tipped over. Solicitous hands reached
out to hoist me up. There were the inevitable questions: “Did you trip?” “Did some dog bump you?” From my vantage point prone on the snow I saw my dog, ridiculously sturdy on his four feet, turning his snooty Airedale head away. Could that be canine embarrassment?

  Like my dog, our human society also operates on the principle of denial. People don’t want to confront my failings, so they apply a quick, dismissive label in their minds. The simple stamp (“she has MS!”) renders me essentially invisible. MS looms large in my life, but I am not the personification of a disease. I want to shout out, I still buy sanitary napkins, fuss about “good fats” and “bad fats” and worry about the ever-deepening wrinkles around my eyes … just like everyone else! However, I resolved years ago that I would play by the rules. After all, nobody likes a grumpy cripple. I’ve learned the correct answer to the question “How are you doing?” is a simple, bright “Fine. And you?”

  It is only the children, who have yet to learn the rules of polite discourse, who are direct in acknowledging my frailties. It is the precocious five-year-old next door who asks with admirable curiosity, “Why do you have that cane?” At a suburban restaurant, I find the three-year-old at the next table staring at me with unchecked, round-eyed inquisitiveness. I am an oddity: sitting alone at a table for four that typically would be occupied by a mother, a grandmother and two kids. His brown eyes widen into open fascination as I heave myself up with my trusty cane and wobble out of the restaurant. I can hear his mother hissing at him, “Sshh. Don’t say anything.”

  The fact is, I am an ordinary person trying hard not to let this stupid condition overwhelm my life. I have tried all of those pointless and desperate attempts at a “cure.” I have applied good nutrition, moderate exercise, a healthy lifestyle and old-fashioned determination to my “problem.” I have taken all the “wellness” courses. I have seen naturopaths, homeopaths, physical therapists, massage therapists—the works. I know the comfortable clichés that are supposed to banish the troubles of chronic illness: “the glass is half full,” “live each day as if it is your last,” “take pleasure in the small things.” There is some truth in all these philosophical encouragements. Yet the bitter reality is that every new symptom brings another flush of panic, along with the cold fear of the further loss of independence and the requirement for yet another accommodation. A friend with MS told me she had managed to find relief from her symptoms … when she was undergoing chemotherapy for breast cancer.

  I have learned—sort of—to accept the frailties of my blemished body. Not to love the embarrassments they cause me but perhaps to accept them. I recognize there are compensations. The forced immobility of MS has brought me to this computer and re-awakened my love of writing. I doubt I ever could have written two books if I was galloping from adventure to adventure, without a thought for the more reflective moments that make up a life examined.

  I think my physical failings have softened the brittle edges of my personality and made me more open to the shortcomings in others. I am more sympathetic, thanks to MS, and less easily disappointed. Are these the qualities, I wonder, that have convinced my husband to overlook the tedium, the worry and the extra work that MS brings to a relationship? I am well aware that dismally few marriages survive the test of chronic disease. I am so grateful that mine, somehow, has beaten the odds.

  I have come to recognize that other people can be just as awkward, clumsy or gauche as I. Just this bleary-eyed morning, in an effort to open a new pack of coffee, my husband, Gregg, speared the scissors into it, spraying ground coffee across the sink, counter, stove, toaster and coffee maker. Hours later, when I found still more coffee on the kitchen floor, I realized I didn’t have a monopoly on MS-style blunders.

  Chronic disease defies normal storytelling principles. There may be a beginning, but there is no climax or satisfying ending. MS is just a long, boring accumulation of losses that no one wants to hear about. I still hope for a cure, a chance to re-engage a life as a participant rather than an observer. But I would settle for learning how to live life—particularly a downsized one—well.

  And once a week, at my aquasize class, I shed the awkward body that has redefined my life. In the pool, my twitching muscles are salved by the grace of water. In the pool, we victims become athletes—the canes, walkers and wheelchairs of dry land left behind. Freed of the constraints of gravity, I reclaim the form I lost. Strong. Subtle. Lithe. In my element, I am a mermaid cutting fluidly through the water, my legs turned tail, slapping the water in pure exuberance.

  Nobody

  Needs to Know

  Mary J. Breen

  I started out as a nine-month secret. It was 1944, and my mother at forty-one discovered she was pregnant with me, her first and only child. Instead of openly rejoicing, my parents decided to tell no one but the village doctor—not one person in their families, not one of their friends. So well did my mother fool people by standing very straight and continuing to wear her sturdy corset that when I was born, the village busybody travelled all the way to the city hospital to see for herself; she couldn’t believe that Mrs. Breen was in the maternity ward.

  My mother considered their close-mouthed behaviour a perfect model for me to follow. Secrets were the norm; “nobody needs to know” was the rule. There were no end of things I was not to mention, from who had been over playing bridge the night before, to what my father’s family had done for a living, to where we’d gone on a holiday. The one really big thing I was never, ever to tell anyone was this: my parents had owned and run a prosperous movie theatre for six years when I was a young child. Then television arrived, and everyone stopped coming because they preferred staying home to watch Hockey Night in Canada and I Love Lucy. Our theatre, like thousands across North America, closed its doors. Soon afterwards, we moved to another town, where my father returned to high school teaching, and I was told to keep my vivid memories of the theatre to myself. It was as if I’d been put in a witness protection program, and my real past had been erased. So strong was this taboo that as I write these words now, forty-five years later, my stomach tightens up, and I want to beg you never to tell a soul.

  None of the other things I was forbidden to speak of seemed at all important. They weren’t the “good” secrets I had heard whispered in the schoolyard, the kind that are irresistibly better passed on than kept to oneself. Nor were they the life-or-death ones I read about in books—no murders or spies or mad relatives in the attic—but just stories of ordinary people doing ordinary things. I couldn’t understand how we could be hurt by anyone knowing that the Breens had been farmers, or that my father had been scouted by a major league baseball team (but had turned it down for some unspoken reason), or that he had had a job other than teaching. It was like being told to hold my breath forever.

  I obeyed their secrecy rule, but I didn’t like it, and I certainly didn’t understand it. I assumed it was somehow connected to their ominous reminders that since we were Catholics in a Protestant town, we needed to keep things close to the chest. Perhaps “they” weren’t exactly the enemy, but on the other hand, “they” didn’t need to know our business. (This old kind of Irish Catholicism may seem strange now, but just thirty years earlier, my parents had experienced the bigotry of Toronto’s “No Irish Need Apply” signs, and for them, your religion was still the test of whose side you were on.)

  Gradually it became clear to me that not only was I to keep many things secret but many things were being kept secret from me as well, especially about my father. “She doesn’t need to know” was the other half of their rule. Although I heard many stories about my mother’s family, I learned next to nothing about my father’s. Every evening when we said the rosary, we prayed for the repose of the souls of his parents, aunts and uncles, and a sister, people he spoke of with great fondness—but little detail. The only contacts with his two brothers and one sister were Christmas cards and occasional letters that, of course, I wasn’t allowed to read. We didn’t visit them, and they didn’t visit us. O
nce, and only once, a brother came for a short visit. Even though I was only eight or nine at the time, I couldn’t help sensing the tangle of love and pity my father felt toward his favourite brother. Of course, I wasn’t told why; I was just told not to ask any questions.

  I loved my father in the unconditional way children do when they are with someone who gives them endless approval. He was a gentle, handsome, loving man who always had time for me. We spent hours and hours together—playing cards, painting, playing ball, going for walks, fishing, making up math quizzes, doing homework, reading bedtime stories, as well as going to daily Mass and saying our prayers. I have a photo of the two of us, me about eight, my father close to fifty. My hand is in his, and I’m grinning up at the camera, certain that life is full of only good things. That’s how I felt around him—except when I’d ask him about his early life. Then his manner would change. Instead of his usual comfortable way, his answers would become brief and uninformative. He wouldn’t get cross with me, but until the topic changed, I felt as if a door had closed between us. I was always left hungry to know more.

  Of course, memories have a way of popping up unbidden, and sometimes little things did come out. I remember he started calling me Genevieve, his sister’s name, when we played cards because he said I teased him exactly as she had done. And once he told me about taking out a new Arabian horse against his father’s orders, an unbroken stallion that had thrown and nearly killed him. I also remember one Christmas, as I sat surrounded by gifts, his telling me that when he was young, he and his siblings had received only one orange each. Then there was the story, one he and I both loved, of a boarding house where the woman owner would tuck a loaf of bread right up into her armpit while she cut off chunks and then flung them off the end of her knife to the men. These are not remarkable stories in themselves; what’s remarkable is that despite how much time I spent with my father, this was almost all I knew of his past.