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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 I transfer myself from my wheelchair to the toilet? Would I wet myself instead or in the process? Would I void completely enough to prevent the antibiotic- resistant bacteria that have colonized my bladder from proliferating into a full- blown urinary tract infection? No such luck, and so I've wound up sporting a drainage bag. Will it hold, or will it disgorge its yellow contents all over someone's new wall-to-wall carpeting? Will my bowels move today? With what kind of assistance? Because urination and defecation once formed the site for a highly charged struggle between infant and mother, and since part of mother's victory consisted in ensuring that one carried out these "duties" while thinking and speaking of them as little as possible, attention devoted to them is tainted in a way that hours spent coloring and styling one's hair or polishing one's fingernails would not be, even though these too involve managing waste matter. "Deaath with dignity," which has become a catchphrase now that dying can be prolonged almost indefinitely, provides a polite means of expressssssing what a student in a class on death and loss recently listed as her greatest end-of-life fear: "having somebody wipe my butt." The spirit eroded by effortful trivia is expended utterly in a waste of shame at these infantile concerns. I'm ready to leave them behind.
On the morning my mother decided that the few weeks her highly aggressive lung cancer could offer her would hold nothing of value to her, she mouthed to her pulmonologist, "I'm ready." Shortly thereafter, the resident covering for her primary-care physician came in. Fresh out of medical school and visibly shaken, he began to protest her decision, listing various weapons that might still be deployed. Prevented by a tracheostomy from uttering a sound, Mother regarded him implacably.
"I know this is hard for you," I said to him. "I'm sure you went into medicine to make people well, not to let them die. But you have to understand that for some of us, death is not an enemy." He couldn't understand. He went away, and we didn't see him again.
Fight or flight: a common enough response to an event that is literally unfathomable, since it extinguishes the being who does the knowing, and therefore dreadful, as any threat to our existence must be. For protection, and for comfort when protection fails, we huddle together in social formations that cope variously with the ineluctable and destabilizing fact that every individual member, regardless of station or merit, will at some point cease to be. Small wonder so many societies function as though perched on the brink of dissolution: they are, from the perspective of those members engaged in death and birth, dissolving and reforming at every instant. The corruption and imminent demise so lamented by every age in relation to its golden past is not the world's but our own. Pace the doomsayers, the cosmos seems likely to putter along all but forever, not discernibly the worse for wear; even humankind may prove surprisingly durable; but each one of us will not.
The whole of psychological development and cultural production occurs not merely in the context of but in response to the certainty of individual death: the sole absolute in the flux and welter of human experience. "Of all the wonders that I yet have heard," Shakespeare's Julius Caesar ruminates as his own end looms,
It seems to me most strange that men should fear;
Seeing that death, a necessary end,
Will come when it will come .
At least until now, death remains the ultimate necessity.
'Twas ever thus, though it may not always be. The stunning scientific advances of the twentieth century, if they continue in this one, may lead to the fulfillment of humanity's (and, as far as we can tell, only humanity's) dearest wish: to live forever. I'm not talking about the "everlasting life" of an "immortal soul" or any other such myth constructed to allay anxiety about What Comes Next (and indubitably, we reassure ourselves, something always has and therefore something will come next). I mean living on just as you live now-taking out the rubbish and the compost, changing the bedsheets on Sundays, buying new flea collars for the dogs, toasting the new year with champagne every January 1-forever. "Immortalists," people with such plans sometimes call themselves. I once knew one, quite a famous one, but he died some years back. Using nanotechnology to repair physical damage at the molecular level; freezing the body until a cure has been developed for whatever ails it, including mortality itself; downloading "personness" onto a microchip: the schemes for self-perpetuation are many and mostly fantastical. But then, a century ago, so was swooping through the air between San Francisco and Boston, not to mention through the vacuum of space .
I feel neither doubt about the ability of scientists to invent physical immortality nor qualms about the propriety of their doing so. I've never seen the point of bleating about violations of natural law, whether these involve inserting fish genes into tomatoes to improve their shelf life or using fetal stem cells to grow new organs. After all, we eat both fish and tomatoes in some form or other. And in view of the difficulty we have dissuading adolescent girls from keeping their babies instead of permitting them to be adopted by mature infertile couples, the chance seems remote that we'll ever see, queued up outside abortion clinics, hordes of women who got pregnant solely to sell their fetuses to organ farms. New discoveries clearly and continually demonstrate our feeble grasp of natural law, which may be in itself inviolable (though certainly open to human discovery and interpretation) or, on the contrary, subject to infinite revision. One way or the other-that is, whether we've always been able to live forever but haven't learned how, or whether we've never been able to live forever until we learned how-immortality, if or when we achieve it, will be a thoroughly natural state .
What it will not be is a human state, not in any way that we might recognize those living in it as human. Not merely our physical but our psychosocial selves rest in the reality that we don't have all the time in the world. We mold our fables into life's shape: beginning, middle, end (death for tragedy, death deferred for comedy, but the reference point is the same). So too our music, which bursts forth from silence and dies away into silence again. Our paintings and photographs freeze moments out of time and suspend them against the blank space of eternity. Our relationships gain much of their piquancy from our awareness that every beloved is frail, imperfect, and subject to loss. We rear children who will bear our essence forward into a world we can never enter. Our gods differ from us in that they never die or, dying, rise again. If we lived forever, we might well go on creating, loving, worshiping, but the impetus for and the premises of these activities would be wholly alien to the ones we have now. Death makes us who we are.
© 2001 by Nancy Mairs. All rights reserved.