A Life Defined by Losses and Delights
TUCSON — I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are “handicapped” or “disabled.” I made the choice a number of years ago, unaware of my motives for doing so. People--crippled or not--wince at the word “cripple,” as they do not at “handicapped” or “disabled.” Perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind, but who can face the truth of her existence squarely. As a cripple, I swagger.
“Cripple” seems to me a clean word, straightforward and precise. As a lover of words, I like the accuracy with which it describes my condition: I have lost the full use of my limbs. “Disabled,” by contrast, suggests any incapacity, physical or mental. And I certainly don’t like “handicapped,” which implies that I have deliberately been put at a disadvantage, by whom I can’t imagine, in order to equalize chances in the great race of life. These words seem to me to be moving away from my condition, to be widening the gap between word and reality. Most remote is the recently coined euphemism “differently abled,” which strikes me as pure verbal garbage designed, by its ability to describe anyone, to describe no one.
I haven’t always been crippled, a fact for which I am grateful. To be whole of limb is, I know from experience, infinitely more pleasant and useful than to be crippled; and if that knowledge leaves me open to bitterness at my loss, the physical soundness I once enjoyed (though I did not enjoy it half enough) is well worth the occasional stab of regret.
When I was 28 I started to trip and drop things. What at first seemed my natural clumsiness soon became too pronounced to shrug off. I consulted a neurologist, who told me that I had a brain tumor. About a year and a half later I developed a blurred spot in one eye. I had, at last, the episodes requisite for a diagnosis: multiple sclerosis. I have never been sorry for the doctor’s initial misdiagnosis, however. For almost a week, until the negative results of the tests were in, I thought that I was going to die right away. Every day for the past nearly 10 years, then, has been a kind of gift. I accept all gifts.
Multiple sclerosis is a chronic degenerative disease of the central nervous system; during its course, which is unpredictable and uncontrollable, one may lose vision, hearing, speech, the ability to walk, control of bladder and/or bowels, strength in any or all extremities, sensitivity to touch, vibration, and/or pain, potency, coordination of movements--the list of possibilities is lengthy and, yes, horrifying. One may also lose one’s sense of humor. That’s the easiest to lose and the hardest to survive without.
In the past 10 years, I have sustained some of these losses; my disease has been slowly progressive. My left leg is now so weak that I walk with the aid of a brace and a cane. I no longer have much use of my left hand. Now my right side is weakening as well. Overall, though, I’ve been lucky so far; the terrain left me has been ample enough to continue many activities that absorb me: writing, teaching, raising children and plants and snakes, reading, speaking publicly about MS and depression, even playing bridge with people honorable enough to let me scatter cards without sneaking a peek.
Lest I begin to sound like Pollyanna, however, let me say that I don’t like having MS. I hate it. My life holds realities--harsh ones, some of them--that no right-minded human being ought to accept without grumbling: One of them is fatigue. I know of no one with MS who does not complain of bone-weariness; I wake up in the morning feeling the way most people do at the end of a bad day, and I take it from there.
I lead, on the whole, an ordinary life, probably rather like the one I would have led had I not had MS. I am lucky that my predilections were already solitary, sedentary, and bookish. I am a superb, if messy, cook. I play a fiendish game of Scrabble. I like to sit on my front steps with my husband as we make sure that the sun gets down once more behind the sharp childish scrawl of the Tucson Mountains.
This lively plenty has its bleak complement, of course, in all the things I can no longer do. I will never run again, except in dreams, and I can no longer pick up babies, play the piano, braid my hair. I am immobilized by acute attacks of depression, which may or may not be related to MS.
These two elements, the plenty and the privation, are never pure, nor are the delight and wretchedness that accompany them. The most important struts in the framework of my existence, of course, are my husband and children. Dismayingly few marriages survive the MS test, and why should they? Most 22 and 19-year-olds, like George and me, can vow in clear conscience, after a childhood of chicken pox and summer colds, to keep one another in sickness and in health so long as they both shall live. Not many are equipped for the dismay, the extra work, the boredom that a degenerative disease can insinuate into a relationship. Children experience similar stresses when faced with a crippled parent, and they are more helpless, since parents and children can’t usually get divorced. Deprived of legal divorce, the child can at least deny the mother’s disability, even her existence, forgetting to tell her about recitals and PTA meetings, never inviting friends to the house. Many do.
But I’ve been limping along for 10 years now, and so far George and the children are still at my left elbow, holding tight. Anne and Matthew vacuum floors and dust furniture and rake up dog droppings with just enough grumbling so I know that they don’t have brain fever. And far from hiding me, they’re forever welcoming gaggles of friends while I’m wandering through the house in Anne’s filmy pink baby doll pajamas. And they all yell at me, laugh at some of my jokes, in short, treat me as an ordinary human being. I think they like me. Unless they’re faking . . . .
Faking. There’s the rub. Tugging at the fringes of my consciousness always is the terror that people are kind to me only because I’m a cripple. My mother almost shattered me once, with that instinct mothers have for striking blows along the fault-lines of their children’s hearts, by telling me, in an attack on my selfishness, “We all have to make allowances for you, of course, because of the way you are.” She was awfully angry but at the time I felt my worst fear, suddenly realized. I could bear being called selfish: I am. But I couldn’t bear the corroboration that those around me were doing what I’d always suspected them of doing, professing fondness while silently putting up with me because of the way I am. A cripple. I’ve been a little cracked ever since.
Along with this fear comes a relentless pressure to please. Part of the pressure arises from social expectations. In our society, anyone who deviates from the norm had better find some way to compensate. Like fat people, who are expected to be jolly, cripples must bear their lot meekly and cheerfully. A grumpy cripple isn’t playing by the rules. And much of the pressure is self-generated. Early on I vowed that, if I had to have MS, by God I was going to do it well. This is a class act, ladies and gentlemen.
Because I hate being crippled, I sometimes hate myself for being a cripple. Over the years I have come to expect--even accept--attacks of violent self-loathing. Physical imperfection, even freed of moral disapprobation, still defies and violates the ideal, especially for women, whose confinement in their bodies as objects of desire is far from over. Today’s ideal woman, who lives on the glossy pages of dozens of magazines, seems to be between the ages of 18 and 25; her hair has body, her underarms are dry; she has a career but is still a fabulous cook, especially of meals that take less than 20 minutes to prepare; she jogs, swims, plays tennis, sails, but does not bowl. Though usually white and often blonde, she may be black, Hispanic, Asian, or Native American, so long as she is unusually sleek. She may be old, provided she is selling a laxative or is Lauren Bacall. But she is never a cripple.
Like many women I know, I have always had an uneasy relationship with my body. As I entered adolescence, I believed myself unpopular because I was homely: my breasts too flat, my mouth too wide, my hips too narrow. I carried this sense of self-alienation with me into adulthood, where it regenerated in response to the depredations of MS. Even with my brace I walk with a limp so pronounced that, seeing myself on the videotape of a television program on the disabled, I couldn’t believe that anything but an inchworm could make progress humping along like that.
At my age, however, I don’t spend much time thinking about my appearance. The burning egocentricity of adolescence, which assures one that all the world is looking all the time, has passed; I’m also too old to believe in the accuracy of self-image. I know, in fact, that when I’m rested, well dressed, and well made up, I look fine. The self-loathing I feel is neither physically nor intellectually substantial. What I hate is not me but a disease.
I am not a disease.
And a disease is not--at least not single-handedly--going to determine who I am.
At the beginning, I thought about having MS almost incessantly. Each night I’d get into bed wondering whether I’d get out again the next morning, whether I’d be able to see, to speak, to hold a pen between my fingers. Knowing that the day might come when I’d be physically incapable of killing myself, I thought perhaps I ought to do so right away. Gradually I came to understand that the Nancy who might one day lie inert under a bed sheet, arms and legs paralyzed, unable to reach out for a gun, a bottle of pills, was not the Nancy I was at present, and that I could not presume to make decisions for that future Nancy.
I learned that one never finishes adjusting to MS. One does not, after all, finish adjusting to life, and MS is simply a fact of my life--not my favorite fact, of course--but as ordinary as my nose and my yellow Mazda station wagon. It may at any time get worse, but no amount of worry can prepare me for a new loss. My life is a lesson in losses. I learn one at a time.
Researchers have made some progress toward understanding the mechanism of the disease but they are nowhere near its prevention, control, or cure. And most of us want to be cured.
The absence of a cure often makes MS patients bitter toward their doctors. Doctors are, after all, the priests of modern society whose business is to heal. Doctors too think of themselves as healers, and for this reason many have trouble dealing with MS patients, whose disease in its intransigence defeats their aims and mocks their skills. Too few doctors, it is true, treat their patients as whole human beings, but the reverse is also true. I have always tried to be gentle with my doctors, who often have more at stake in terms of ego than I do. I may be frustrated by the incurability of my disease, but I am not diminished by it, and they are. When I push myself up in the waiting room and stumble toward them, I incarnate the limitation of their powers. The least I can do is refuse to press on their most tender spots.
This gentleness is part of the reason that I’m not sorry to be a cripple. I didn’t have it before. It has opened my life enormously, this sense that my frailty and need must be mirrored in others.
If a cure were found, would I take it? In a minute. I may be a cripple, but I’m only occasionally a loony and never a saint. Anyway, in my brand of theology God doesn’t give bonus points for a limp.
