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A Life Defined by Losses and Delights

March 16, 1986|Nancy Mairs | This is an excerpt from author Nancy Mairs' "Plaintext , " to be published in April by the University of Arizona Press

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.

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