Poliomyelitis | Paralysis | Iron Lungs | Death from a Wasting Disease

My sister! My teacher! In 1952 she had two weeks' advance knowledge of the theory and practice of the wasting disease. I want you to see her. She is my companion-in-arms.
No goddess, nor villain. A child of twenty-nine. Two years of college. Presented to society in late 1943. A woman of great sport and warmth.
She likes sailing, and tennis. She is a good swimmer, with a broad fine stroke in the school of the Australian Crawl. She loves cooking, and from time to time I would hear her in the kitchen, humming tunelessly to herself.
Of all the unlikely people, of all the unlikely people to be kissed by the gray disease: who would have guessed? As of the second of September, she is laid in the hospital bed by poliomyelitis. By the sixth of September, they have laid her in an iron lung so that she can continue to breathe. And on the 29th of December, of the same year, they lay her in the grave.
She has never thought about the functioning of her body. She has no idea in the world how her various muscles combine in their workings with bone in a magic way to carry her through the range of motion: the complex interface of muscle and bone and nerves, the action and reaction of dendrons, axons, neurons, cytons that makes it possible for her to climb into a sailboat and spend a day racing before the wind on the St. Johns River. I am sure that the knowledge of how it is done never comes to her. Nor the importance of it. It never occurs to her. At least, not until late summer 1952.
She a naïf who spends twenty-nine years of her life harming no one and loving, to the depths she is able, a few close family members and a husband. She is an innocent, slightly freckled child who plays a fair game of tennis, and who trails her red hair behind her like a fire.
She contracts polio in late August, and in the intense stage it moves slowly over the entire field of her body. When the fever departs, she has one muscle remaining: in her left foot. Because of the loss of her ability to breathe, she is fitted with a machine that breathes for her. "Whoosh" it goes, fifteen times a minute, nine hundred times an hour.
She cannot scratch her knee should it itch. She cannot bring food to her own mouth. She cannot brush back her fine red hair. She cannot wash nor wipe herself. She cannot reach out to hold another's hands.
In her respirator, she is flat on her back. She is turned every hour or so to prevent bedsores, which can become malignant and score the body down all the way to white bone. The regularity of the bellows punctuates her every moment, asleep or awake. "Whoosh." "Whoosh." A submarine: she is lying in a submarine. Warm. Protected. With light bulbs festooning the iron lung; like a newly constructed building, or a Christmas tree. A submarine with portholes all along the side, so you can peer in and see where the muscles have disappeared from bone.
She, my sister, the originator and founder of all this pain, is now quite thin. Bones show beneath flesh, a picture out of Dachau. A woman's once graceful body now has knobby knees, knobby elbows, celery root. The hip bones jut up from a wasted stomach. The entire skeletal frame is pushing to get out, to get born, to be done with this painful flesh.
Her eyes are quite large now. Her face so shrunken and drawn that the eyes start out as if she were some night creature, startled in her submarine body. "Whoosh." She views you, the room, the world, upside down through a mirror. People stand outside her new breathing machine, up near the head, and wonder what to say. If they stand, she looks at their legs, legs that move. If they sit, she sees their faces backwards. Friends' faces are turned around, turned obverse.
She who never thought seriously about sickness, nor her body, nor death, is thinking on them now, thinking hard on them. And she wonders what to say to the reversed faces of her old friends who cannot imagine who cannot imagine what it is like to be in the pale tan submarine, with all the dials and meters, and the bellows that go "whoosh" fifteen times a minute, nine hundred times an hour.
And if they talk, and they do talk, and if she replies, and she does reply, her words are turned wispy, hard to hear, for the talking mechanism is dependent on lungs and air, and her lungs have been deprived of power to push air and words.
And when she talks, and she talks so that you can barely hear her, she talks on the exhale, because she cannot talk on the inhale (one does not fight the submarine), which means that her sentences are interrupted fifteen times each minute, for the breathing machine to make her breathe, which makes conversations with her quite leisurely, long pauses in the sentences, and everyone learns to be patient, very patient, with this new woman in her new submarine, who has become very patient.
Very, very patient. Doesn't demand too much, really. Can't demand too much. Except that you feed her when hungry (she is not very hungry) and bathe her when dirty (she is not very dirty, doesn't play in the mud too much) and dry off that place near the corners of her eyes when sad (she is sad very much because she doesn't know what has happened to her, nor why) and be with her when she thinks on the things that are gone now, like body and arms and legs and motion which are gone now, so soon now, things that she loved, gone so soon now, like sailing and tennis and running into the surf at the beach on the Atlantic Coast, and most of all, the ability, that important ability to scratch her knee, when it begins to itch, or turn over in her sleep, which she doesn't do very much any-more, sleep that is, because of the noise, and confusion, and the strange change that has come over her body, which with the six nurses and orderlies and nurse's aides and the eight doctors and technicians and physical therapists, which with all these people working at her body, somehow doesn't seem to be her body any-more at all, at all.
They give her a mirror, over her face, turned at a forty-five-degree angle, attached to the submarine, the submarine that pumps away, with its engine pumping away. They give her a mirror so that she can see the world, so she doesn't have to look at the ceiling, the light-green institutional ceiling, with the flies, and the single naked light bulb. She is given a mirror, her own mirror, so that she can watch the world go by outside her door, there in her hospital room. She doesn't know if her room has a view out the window, because she isn't turned that way, but rather, turned so that she can see out into the hall, see the nurses and orderlies and doctors, who come in to do things to her body, her new body, a body which has come up with such new experiences of pain, of new pain. She never thought she would be capable of surviving such pain. She never thought she would, my sister didn't: but she did. For a while, for a while.
They bring in a television set, into her room, and she becomes a fan of baseball, watching baseball through her mirror, on the new fangled television set. She never cared for baseball before, before all this happened. She cared for sailing, and tennis, and some golf, from time to time (she was very good at the long stroke, in the first, fourth, and eighth holes at Timuquana Country Club), but she never really cared for baseball, at least not until now, but the afternoon nurse, Miss Butts, likes baseball, so they watch it together, and my sister can watch the Dodgers (whom she had never heard of before) playing the Pirates (whom she had never heard of before) and she watches the occasional home run in the mirror, when the batter hits the ball, and takes off, and runs to third base, then to second, then to first, and finally to home. It is comforting, in a funny sort of way, to know that people still play, think of, watch, write on, report on, worry about something like baseball.
They never taught her very much about life, and the body, and muscles and things, before this. When she was at Stephens College, they taught her dance, and music, and a smattering of literature courses, and some math, and a little chemistry. But they never taught her about the catheter stuck into her urinary tract, which stays there to drain the piss that won't come out on its own, and how urine crystals grow, so that when they pull the catheter out, it is like they are ripping out the whole of her insides, her entire urethra shredded to ribbons by these crystals that come out of her, and no pain-killers, they give her no pain-killers, because this is a disease of the nervous system, and it might affect the regeneration of nerves. They taught her some math, and a little chemistry, and how to dance, at Stephens College, but they never taught her the new dimensions of pain, which she never ever thought she could bear, never, in a thousand years, but she does, she does, even though she never thought she could.
They taught her how to diagram sentences; and they taught her about Mozart, and Beethoven. They showed her the difference between the Samba and the Rumba, and between the Waltz and the Foxtrot, she remembers her teacher played "Besame Mucho" over and over again, so they could learn the Samba - - - but they never taught her about her lungs, the beautiful rich red alveoli that lose the ability to aspirate themselves, so that one night they think she is clogging up, suffocating, and the doctor comes, with all the lights, and slices into the pink flesh, at the base of her neck, the blood jets up all over, and she can see the reflection of her neck in the mirror of his glasses, as he cuts into her neck (no anesthetics permitted because they affect the dark gray nerves nestled in the aitch of the spinal column, and polio got there first) the blood goes all over his smock, a drop of her blood even flecks his glasses, and of a sudden no air comes through nostrils or mouth, and she is sure she is suffocating, the very breath has been cut out of her, and her doctor punches a three-inch silver tube down into her lungs, so that every two hours they can pump out the mucus that collects in her lungs: they never taught her what it feels like to breathe through a little silver navel in her throat, never taught her about the feel of mucus being pumped from her lungs. They never taught her about the kiss of the trachea, the silver kiss, at the base of the neck, the kiss of this silver circle, the silver circle of the moon.
She was quite good at chemistry, my sister was: quite good. She got special honorable mention, at graduation, from Stephens College, there in central Missouri. What she remembers most about Stephens is the spring evenings, when the smell of hay would drift into the classrooms, make her feel so alive, in the rich fecundity of central Missouri, the rich hayfields, and the people moving so slowly, on a spring day, through the fields, those rich fields of hay. Or in the fall, when the moon would peer up over the fields come hush by midnight: the moon growing a silver medallion, hanging there in the sky, the sky so black, the moon so white-dust-silver. They gave her a silver medallion, for her chemistry (she was surprisingly good at it) but not so good at literature, she never cared for Dickens, or Jane Austen, but she was so good at H₂SO₄, and NaCl, and MnO₂ that they gave her a special ribbon, with a silver moon on it, which she hung on her neck, which hung where the new silver moon of the tracheotomy hangs now, her badge, the badge of a job well done --- a job well done in the education on the nature of the body, and its diseases, and the way the body will try to kill off its own, because of the diseases, and the deterioration of the kidney, bladder, lungs, heart, mind, under the sweet kiss of the disease, under the sweet new kiss of the disease.
My sister: the new student! A student of the body, and a student of disease, and perhaps even a student of sainthood: Sainthood. The questions of the nuns and priests and ministers of all religions of all times. If a tree falls in the forest, and no one is around, and no one hears it, was there really a sound? Or, can God create a rock, such a huge rock that He Himself cannot lift it? Or, can God create a disease, such a painful awful burning disease of the nervous system that invades the tender spinal cord, scars the nerves therein so completely, with such pain that one can wish not to live any-more? To live no more.
My sister. An innocent saint. For slightly less than four months, from 2 September 1952 to 29 December 1952, she will have ample time to work on her sainthood. She will have hours to recall growing up in the sun of Florida, her shadow a black hole on the burning white sands of the beach.
She will have so much time to remember running for a fast lob on the white-line tennis courts at the Timuquana Country Club, she, there in her new submarine, time to remember that for twenty-nine years she had a constant companion, her body. A companion that asked little and gave much and, of a sudden, in the early fall of that year, turned a dead weight ... like a tree that has had the life leached out of it. So dead, so weighted, that she must ask the good nurse to scratch her forehead, move a leg, adjust the hair, brush away the wetness that forms of its own accord at the corner of her blue-gray eyes, just below those beautiful ruddy lashes that match her beautiful ruddy skin - - - turning quite pale now even as she remembers a spectacular day from last summer with the sun coming down over the water, a spectacular day on the St. Johns River running before the wind in a White Star sailboat. She remembers the wind in her hair, and her body riding the swells from the great dark Atlantic near the jetties, that great flowing expansive feeling of having all of life before her, of having the wind and the river and the freedom to ride them, to be alive, to be so full of life.
"This is not happening to me," she thinks. She cannot believe the termination of self and being in this dark room of clanking machines on a snow-dawn in North Carolina. "This is not happening to me," she thinks, but she is wrong. She is drowning in the liquids of her own body, and there is no way she can call out, to tell the nurse what is happening.
My sister, quite alone in her struggle as the sun begins to break through to the gray waste outside. She tries to breathe in; cannot; and suddenly there is no spirit in her. My sister. Eyes, mouth, heart, single moving muscle in foot cease. There is no more warmth within or without, beyond the artificial heater placed inside the submarine which, as of now, has discharged its last patient.
The iron maiden continues to pump dead lungs for over an hour before the night nurse discovers the drowned creature, gray froth on blue lips. My sister, who never did anyone any harm, who only wished joy for those around her, now lies ice and bone, the good spirit fled from her.