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 grey 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 naif 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 that 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.