A Troubled Guest: Life and Death Stories

Because in 1972 I learned that I have multiple sclerosis, I have reflected for more than quarter of a century on the issues that confront a person who, because of physical and/or mental deviance(s) from the nondisabled norm, tends to be viewed by society at large with the classical tragic emotions of pity and terror and deemed to be stuck in a life not worth living. A logical next step seemed to entail reflecting upon social attitudes toward the only available alternative. Although many people are quick enough to sanction death for others-in such forms as abortion, euthanasia, and capital punishment-few seem capable of contemplating their own end, or that of anyone with whom they are intimate, with anything like equanimity. I thought I might try. Beneath my interest in death, as in disability before it, lay my desire to understand the role of affliction in perfecting human experience. Although suffering is a state often considered scandalous in modern society, a mark of illness to be cured or moral deviance to be corrected, from a spiritual perspective it is simply an element in the human condition, to be neither courted nor combated. To refuse to suffer is to refuse fully to live. Doing so leads not only to risky behaviors (self-mutilation, anorexia nervosa, and addiction all stem from an inauthentic relation to suffering) but also to an anesthesia of the soul which renders play all but impossible. In short, suffering needs to be redeemed and reincorporated into the framework we use to ascribe meaning to otherwise chaotic experience. Without death to round our little lives, they have neither shape nor sweetness nor significance. When I was offered a contract to write a book about death, however, I replied that I might just as soon do the dying itself. I wasn't speaking figuratively or facetiously. I meant simply that I had reached the point in my crippled life where, my losses hugely outweighing my gains, death seemed less like subject matter than like an act to be got on with and out of the way. Then my condition began to suggest that I might in fact get my half-heedless wish. I might never complete such a book. I might never even get it fairly started. And I discovered that I am perhaps nowhere near as scornful of my rubbishy existence as I've often made myself out to be. I'm willing enough to die. Some mornings I have waked weeping to find myself still alive. I no longer face the challenge of living a new day well, to which my spirit might rise, but daunting hours of struggle to accomplish the most basic tasks: capturing food on a fork and then raising it to my lips, turning the pages of a book or magazine, scratching my nose or grasping a pencil, pressing the button on my speakerphone or the joystick on my wheelchair. I have found no way to describe the attentive effort these gestures require to those who perform hundreds of them every day without notice. It used to feel like moving under water; now, like moving through aspic; one day, like moving through amber: like a prehistoric insect, not at all. Because my fatigue set in more than forty years ago, well before other symptoms of MS appeared, I've long since forgotten what unforced activity at the most mundane level feels like. I've lost the ability to formulate any plan more elaborate than wheeling from my studio to the house, retrieving my lunch from the refrigerator, and eating it-unless I upend it during the transfer, in which case the dogs will eat it while I rage. This ever-narrowing focus wears away my spirit, which feels thinner now and more likely to tear than the page on which these words appear. My most arduous undertakings in recent years have involved the toilet, so that much of my attention each day focused on rudimentary issues: Could IMairs, Nancy is the author of 'A Troubled Guest: Life and Death Stories' with ISBN 9780807062487 and ISBN 0807062480.