It started when I was very young—a girl four years old, in fact. I developed a fever, and my mother—not wanting to take any chances—rushed me to the doctor’s office. My usual pediatrician was not in, but his business partner, who shared the same rooms, was willing to see me. After much probing and thumping (what was I, a melon?) he came to the conclusion that my illness was not life-threatening, and that with some aspirin and fluids and rest I would recover.
Then he scrutinized my toes.
“I don’t like what I see down here at all,” he murmured. “If you don’t mind, as soon as her fever abates, I wonder if you shouldn’t see a specialist. I can recommend one.”
“What’s wrong?” my mother asked in a panicky whisper.
“Probably nothing,” he evaded, putting away his instruments. “But just to be on the safe side . . .”
A week later another strange doctor was conducting a battery of tests, some superficial, some painful and frightening to a preschooler. Shortly after that, he confirmed the pediatrician’s suspicion: “Your daughter has tronchetaphochoniahediardosis. I think an operation is called for. Sooner rather than later.”
Just like that, after a trip to the local hospital, a surgeon sliced off my little toe. Didn’t really need that appendage anyway, they told me.
But it didn’t end there. During a follow-up assessment, I was diagnosed with LaPlace-Vendôme Syndrome. No immediate action was taken, but the latest physician advised that we let him monitor the condition with quarterly checkups.
I should point out that I have an identical twin, a sister. We were born together, we grew up together, and—by the time we entered first grade, apart from my missing toe—we shared every visible trait. She continued to see our initial pediatrician, who never found fault with her. Nor did she suffer any of the outrages I had to bear.
When I turned eight, the LaPlace-Vendôme Syndrome took a nasty turn, or so the supervising doctor at that time decided. I underwent another operation. There were complications. As the stethoscope-wielders wrote in my record: “The patient’s gastromellerio abnormalities have intensified, with deleterious long-term consequences to the thromboguimetical system and overall functioning of the achroocambonic processes,” or something like that; my grasp of medical jargon has never been secure.
From then on—through elementary, middle, and well into high school—my daily development and semblance of normality was frequently interrupted by stints in one clinic or another, followed by more abstruse tests, tinkerings with my body, and tut-tut pronouncements on how clearing one hurdle had set up a dozen more to overcome. I was given a bewildering assortment of medications, a veritable rainbow (like candy, almost!) of pills which inevitably interacted on a chemical level to distort whatever was really wrong with me . . . if anything ever was. In my sophomore year, my hair fell out. As a junior, I was urged to use a wheelchair—lest I faint, collapse, and injure myself. Senior prom was a dour event for me: while my sister danced with the boyfriend of her dreams, I watched from the sidelines and tried to imagine the day when I would be rid of my malady and could rejoin the ranks of the happily wholesome.
That day was always getting postponed. The ever-burgeoning league of practitioners who practiced on me wrote up a preliminary article concerning my unique state of non-health. I had become a case study! Somehow I managed to get accepted into a community college; perhaps pity-parcels traded among the admissions committee members had something to do with that.
With all the interruptions to study brought on by my various disorders, it was a sort of miracle that I managed to graduate. Even more miraculous: a young man by the name of Marasmo, or just Moe for short, courted me in a very shy and oblique way. My sister, who got married directly after her graduation, facilitated the wooing. Moe proposed to me as I lay in a hospital bed, about to undergo my umpteenth procedure. I accepted his offer, and I think that his attentiveness propped me up enough to survive the most harrowing series of bodily invasions to date.
For in the course of six weeks full of cutting and scraping and irradiating, I lost most of my sight and all sensation below my knees. That did not prevent us from getting wed. We held the ceremony in my parents’ house, in a brief window of time when I was free of treatments. My father strangled back his tears. My mother broke down completely. I was touched. Our honeymoon amounted to four days spent at a local hotel; luxurious as it was, I felt disconnected and dejected, and destined to drag Moe down with me, all the way into the depths of damnation I knew I had yet to experience.
And I was right. Within two years, the complexities of my affliction overruled any hope of independence I had left. I was not surprised to hear that I’d never be able to have children, and if I did conceive, my life would be in peril. The experts, using that excuse to act preemptively, and always in my best interests, yanked out my uterus. Next on the schedule: various other internal organs. The vital ones were supplanted by artificial copies. External features were deemed either corrupted—to be pared away—or inessential: slated for outright immediate elimination. Somewhere along the way, I gave Moe permission to divorce me. When he balked, I initiated the proceedings myself, and instructed an attorney to force the mercy killing through no matter what. As I anticipated, one morning he failed to show up in his bunny suit (a hygienic requirement of visiting my quarters) at the usual hour. I never received word about him from then on.
Currently I reside in a clear glass cylinder approximately two feet in diameter and three in length. I am on full life support. I have no motor capabilities. I am fed intravenously. My prognosis looks good: they tell me I shouldn’t lose any more ground, and—with continuing therapy, research, and advances in science—I should live a “normal” (albeit nonambulatory) existence with the standard life expectancy for a middle-class female in this country. But I have severe reservations about that existence. I mean . . . even an amoeba can slug itself around the neighborhood on its pseudopods; it can explore, react, change, and adapt. Am I less than an amoeba?
The Patient
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