Dropped Threads 2 (15 page)

They Didn’t Come
                    with Instructions

C.J. Papoutsis

When I was five, someone gave me a toy iron and ironing board for Christmas. That was in the 1950s, when we played with gender-specific toys—dolls, toy stoves and tiny plastic dishes—and little girls expected to get married, have babies and be homemakers.

My mother said that one day I would find a kind, generous man to look after me. We would get married, I would clean his house, cook and have babies. That’s what women did. It never occurred to me, or my mother, that I might not enjoy cleaning, cooking or babies, or that there might be other choices.

I did marry a kind, generous man. He came from Athens, Greece, with strong opinions about who in the family did what, but time passed and our roles became blurred. Laundry, housework and cooking got done—by whom didn’t matter after a while.

Growing up as an only child, I’d never had much to do with babies. My mother’s stories about the miracle of birth and instant bonding didn’t prepare me for reality. I bombed out of motherhood when the delivery room nurse gave me our daughter to hold, moments after her birth. My frail self-esteem crumpled when she scowled and pushed me away with the strength of a wrestler. The veins on her head stood out and her face turned bright red. She opened her mouth back to her ears and shrieked like a dentist’s drill with sporadic gasping noises. By the end of my first week of mothering, my main impressions were that babies were loud, smelly, sticky and felt as if they were broken. I also discovered that although my talents were many, non-stop nurturing and caregiving weren’t among them.

Our new family member forced us to live without sleep. Every night around eleven-thirty we bundled her up and hit the road in our drafty 1961 Buick Electra convertible. It had a hole in its muffler and sounded like footage from a Hell’s Angels movie. The little despot slept as long as we kept moving and started screaming again the minute we returned home and shut off the engine. Our landlord disliked our wailing baby and our raucous Buick, so he evicted us.

I had given up trying to pacify our daughter. My husband had no luck either. Everyone said she had colic, but nobody could tell me what colic was or what to do about it. Woodward’s Gripe Water was supposed to help, but dipping her soother in wine was the only thing that worked.

I lived in fear of Sudden Infant Death Syndrome. If the baby wasn’t screaming, I’d jiggle the pram to make sure she was breathing. Then she’d wake up and howl for another two hours. The kid had me figured out. She knew I was frightened and incompetent. Her job was to expose me as an impostor, and she took her work seriously.

I cried, raged and hated myself. I felt like a tired, used-up loser in a saggy, stretched-out body and wanted my pre-baby figure back. My husband wondered who this woman from hell was and what I’d done with his wife. He loved me. We had a healthy, beautiful daughter. What
was
my problem?

I hated being a mother. Being responsible for someone’s life gave me anxiety attacks and a dependency on Rolaids. I was a spoiled, immature twenty-year-old and scared stiff something awful would happen to my child and everyone would blame me. Motherhood was the final exam; I hadn’t studied and got caught cheating. My emotions terrified me, but I couldn’t tell anyone because such feelings were considered unnatural back then.

When I arrived for my six-week checkup in tears, raving about suicide as a community service, my doctor decided I had “baby blues,” a euphemism for post-natal depression. He prescribed Valium. That’s what doctors did in 1969. Valium didn’t cure post-natal depression. I still had it. I just didn’t care.

Nobody told me that babies start growing teeth at three months with a whole new repertoire of symptoms. We tried teething rings and oral jellies, but an old Greek lady told me to dip my finger in brandy and rub it on the baby’s gums. There’s probably something in the Criminal Code now for people who do that. Brandy wasn’t an instant cure, but it gave me a chance to gather my frayed wits occasionally and may have saved our daughter from shaken baby syndrome, something we hear about often these days. She hasn’t become an alcoholic either.

It took me eight months to recover from post-natal depression. Just in time to get pregnant again. Our daughter was seventeen months old when our son joined the family. His arrival was less traumatic because our daughter had already broken us in. We had surrendered to sleep deprivation and were sliding toward full-on psychosis, but then this little guy liked to sleep and only cried when he had a good reason. My post-natal depression lasted three months. This time I took up yoga, not Valium.

Meanwhile our eldest, not to be upstaged by her baby brother, developed a red, scaly diaper rash that conjured up images of jungle body rot. She was allergic to the first two creams the dermatologist prescribed, and in a few days the rash covered her entire body. Strangers peering into the pram jumped back, demanding to know if she was infectious. It took three weeks to get the rash under control so we could take her out in public without attracting a crowd.

Our daughter was allergic to dust, animals, some drugs and many foods. My husband, who grew up hungry during wartime in Greece, couldn’t understand anyone, especially his child, being allergic to food and thought it was downright ungrateful to be allergic to medicine.

The year our children were four and five, we decided to give our first family portrait as Christmas gifts. Both kids woke up with pink eye the day of our photographer’s appointment. My husband thought we should admit defeat and cancel, but I spent all morning applying warm camomile tea bags to the children’s crusty, swollen eyes, hoping they might look human by picture time. A few distant relatives still remember us as those rumpled people with their two sad children squinting at the camera through red, half-closed eyes. It took us twenty-five years to gather enough courage to sit for another family portrait.

By the time our son was two, I’d been a homemaker long enough. Never good at repetitive tasks, I completely lost it over potty training. Spending two months teaching someone to pee in a container wasn’t mentally stimulating enough, so I got an entry-level government job, which was kind of like potty training but with pay. My first year working, half of my monthly salary paid for daycare. Since I enjoyed the social contact, I justified the economic disaster by calling it an investment in mental health. It was, except for the guilt. Dropping the children at daycare every morning made me feel I was abandoning them so I could have fun and get paid for it. It was like saying, Here, I don’t want these kids any more. You take them and I’ll give you money.

My guilt never went away. It roiled just below the surface, then washed over me without warning. When the children were older and we left them at school, I felt bereft when our little shapeless bundles of winter clothing waved goodbye from behind the chain-link fence in the schoolyard. They could have been poster children for a refugee camp.

As a supporter of the women’s liberation movement, I had earned myself the right to work full-time, keep a perfect house, cook gourmet meals and raise exceptional kids. I was a pioneer. One of the first generation of superwomen raising the first generation of superchildren. To ease my guilt and prove my kids weren’t disadvantaged because their mother worked, I nagged, tricked and bribed them to swim before they walked, read before they started school, excel at sports, play musical instruments, look good in designer clothes and graduate in the top 10 percent of their class, even if it was only kindergarten. I wanted to give them a head start in this cutthroat world, to give them a competitive edge—hopefully without pushing them over one.

When my mother cautioned, “Children whose mothers work spend all their time on street corners and become criminals,” I had to prove her wrong. Our kids were twelve years old before they ever crossed a street by themselves.

Our daughter started ballet lessons when she was three. Our son was a member at two golf courses when he was ten. They played soccer, hockey, basketball, baseball, volleyball—if it was round, they chased it, threw it, kicked it or hit it with a stick. Our kids had no time to daydream or gaze into space. Their lives were so structured that we only saw them in the car on the way to and from school, games or classes. We lived like gypsies, except instead of a caravan we drove around in an old station wagon full of ballet costumes, sports equipment, fast-food wrappers and half-eaten fruit. When our son’s teacher complained about the messy handwriting in his homework assignments, he told her, “I can’t help it, my dad takes the corners too fast.”

I loved my kids but never enjoyed them—their vulnerability intimidated me. I wanted to do everything right but didn’t know how. They didn’t come with instructions.

I had no idea what fear was until I had children. Fear for someone you love is a thousand times worse than fear for yourself.

Some people are born with a strong nurturing instinct. Some of us have to learn it. When I finally grew up and stopped beating myself over the head for not being wife and mother of the year, I realized we had been blessed.

Our adult children are gifted in different ways; one is artistic, one is business-minded. More important, they are loving, kind and never miss a chance to laugh. How this happened is both a miracle and a mystery. You need a licence to drive a car, own a dog or buy a gun. Any fool can have a baby. Many have three or four. Some parents do everything right and their children grow up to be axe murderers. We had no idea what we were doing, and ours turned out just fine.

Glimpses

On the
                    Water’s Edge

Ingeborg Boyens

Monday morning at an aging public pool in Winnipeg. I am wearing a black polyester bathing suit, built for functionality if not style. The chlorine vapours envelop me as I walk along the pool’s edge, diligently focused on the business of not falling on the damp tiles. With one hand skimming the wall—nonchalantly, I hope—I pick my way through the neon-coloured Styrofoam “noodles” abandoned by the last aquasize class. As I walk down the stairs into the water, I feel its liquid coolness inching up my ankles … calves … knees … thighs…. In my imagination, my serviceable black suit is transformed into a diaphanous silk skirt pooling on the surface of the water. I slide in, elegance personified, as the water flushes away the pain and awkwardness of my former dry-land stumbling.

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.