DEPARTMENTS

MAY 2006 – NO. 6

At the far end of the workout room a space was left where a woman in an iron lung could be rolled in for a little therapy. I don't know who this woman was, and I never saw anything done to her.

This woman's fate was the fate of one in ten of those who were crippled by the polio virus: the disease struck the muscles of their diaphragms so that they couldn't breathe under their own power. Once the initial onslaught of polio stabilized, some people found they still had sufficient strength so that gradually, over a period of weeks or months, they could emerge from the iron lung — at first for a few hours at a time, then for longer periods, then forever. To help them in the transition, some of these people would be placed on a rocking bed, which slowly rocked like a teeter-totter: first the feet went up and the head went down, then the feet went down and the head went up, and in this way, the guts sloshed back and forth against the lungs and pushed air in and out to help them breathe.

Some of these people recovered sufficiently that they were able to leave both iron lung and rocking bed permanently behind. But some few never emerged from the iron lung, whether they lived for another few months or another 40 years — and this woman in the therapy department was one of those few. Her fate was the grimmest of any of the polio patients in the hospital. When she was rolled in to the therapy department, all activity stopped. There was silence. All of us had to think for a moment: That could have been my fate.

If you were in an iron lung and you wanted help, you couldn't reach for a bell, and chances were your voice wasn't loud enough for anyone to hear. So the woman in the iron lung developed a technique of making clicking sounds with her mouth, the sort of tch-tch you use to urge a horse along. The sharp clicking would cut through the wheezing sighs of the iron lung itself and carry through a ward or down a hall. I knew the woman in the lung was still alive if occasionally I heard her click. Or gulp. Sometimes, she would be taken out of the iron lung to see if she could make the escape to a rocking bed. And while she was out of the lung, she would also practice her frog breathing — swallowing air to force it down into her lungs, gulping it down, to try to learn to breathe in this way — until she started to fall behind and turn blue, and then she would be put back in the lung. I got to the point that I felt reassured when I came into the physical therapy room and heard either clicking or gulping.

The only time I saw the woman in the iron lung move was when she squirmed and squirmed for half an hour. All the muscles she had left were her neck muscles, and she managed to work her head and neck up further and further out of the iron lung until she got one of her shoulders partway out of the neck hole — which was when Mrs. Jones's assistants spotted her and stuffed her back in. Mrs. Jones went over to talk to her quietly for a while, gently, putting her hand in through one of the portholes on the side of the tank to stroke the woman's motionless arm. I never saw the woman try to escape again. Or maybe she was trying to commit suicide. After a couple of months, she died.

*

I had often seen visitors gather around the iron lung and talk to one another as though no one else were present. They would talk about her, and they would talk about others:

"Well, it looks as though he'll be able to get around pretty well on crutches; he's lucky not to end up in a wheelchair."

Or "Well, he's one of the lucky ones — at least he can get around in a wheelchair, you know; he's not in an iron lung."

Or "Well, probably she won't stay in that iron lung forever, and she's lucky to be alive."

Or "Well, it's lucky in a way — at least she didn't live on and have to spend the rest of her life in an iron lung."

This was my brief, but definitive, course in the absurdity of comparing my own life, and my own circumstances, to those of anyone else. We all have the experience of life in common, but the lives we all have are incomparable.

For sure, as President Kennedy liked to say, life is not fair. But it's even worse than that.

*

For those of us who had polio, it seemed inconceivable that such a life-transforming event could be random. If that were true, then no one is safe. Surely, some thought, something could have been done to prevent it; those who caught it must have been inattentive, or must have done something wrong, or — even more speculatively — perhaps they were being punished for having done something else wrong. That our lives could be so fragile, so subject to pure unreasoning luck, that our lives could be so far out of our control, that we could be so defenseless — this is unacceptable. Any cause is better than no cause at all. If there is no rational cause for what befalls us, if luck can begin and change and end our lives, then nothing lies beneath our feet but an abyss of complete meaninglessness: no pattern, no design, no logic, no coherence, nothing to count on, nothing to understand and master, no program to get with, no hope to shape our destinies. If this is true, then we are all absolutely vulnerable — and to accept that is horrifying. And yes this is exactly what I've come to believe is true.

*

The lives of others at the time I got polio:

At the age of six, Edmund Sass was given injections of curare — the stuff South American jungle hunters dipped the tips of their arrows in to paralyze the animals they shot. Years later, Sass asked a doctor why anyone would have injected him with curare. The doctor smiled and said, "Well, it gave them something to do."

A nine-year-old girl named Marilynne Rogers, who got polio several years before I did, was given hot wax treatments. Children were covered with hot wax — presumably in a variation of the Sister Kenny method — and, to be sure, they screamed when the wax was removed and took all their body hair with it.

David Kangas, who got polio in 1952 at the age of 15 and was still in the hospital doing physical therapy in the summer of '53, declined an invitation to go with a group of his companions when they managed to extricate themselves from the hospital to visit a faith healer who had come to town. "I remember them coming back from the healing tent and telling us what happened. They said that the preacher had put his hands on them and told them to rise and walk. But, of course, they couldn't. They were still in their wheelchairs when they got back."

But the medical profession is no more ready to give up on patients than faith healers are. It may even be that the urge to do something, the refusal to acknowledge that there is nothing to be done, is a universal human instinct. It used to be said of Anthony Eden, who became prime minister of Great Britain for two years in 1955, that he could never resist the impulse to do something, even when doing nothing was clearly the better choice.

Around the same time I was in the hospital, Gail Bias, who got polio at the age of two, had her first reconstructive surgery at age six, not knowing what it was for — something having to do with her feet. At the age of ten, she had her second surgery: to the top of her foot, to give her some lift for her toes when she walked. For her third surgery, "all the bones," she said, in her left foot were broken so that her foot would be "normal." Her fourth surgery came two weeks later, on her right leg: a "bond block," to keep that leg from growing more quickly than her polio-impaired left leg.

Kay Brutger had polio at the age of nine months. She had her first surgery for a drop foot when she was six years old. A plate was put in her right leg, an ivory screw in her right knee, and a cord was run down to her right foot to pull the toe up. After she recovered from the surgery, she still had a drop foot. She had her second surgery when she was 11. Her right leg was not growing as quickly as her left leg, so they put staples in her left knee to slow the growth of her left leg. They also attempted to reposition her inward-turning left foot. After that surgery, she had a "trick" knee, and so, when she was 17, she was taken back into surgery to repair the knee. Eight screws and two plates were put in her knee and thigh. When she came out of the body cast six months later, she found her left foot had been set at the wrong angle so that she now had trouble walking both because of her drop foot and because of her inward turning left foot.

Bill Van Cleve, when he was able to get out of bed, where he'd been for about a year after contracting polio at age ten, found that his toes pointed outward, but the orthopedic surgeons at his hospital said, "Gee, we can fix this up. With a slice in the inner side of the arch we can remove a little bit of the tendon there, and that will cause the arch to curve up again." So the surgeons performed the procedure, but the surgery did not go quite as planned, and some complications ensued so that one leg grew to be a couple of inches shorter than the other one.

Pat Zahler, who had surgery at age six to fuse a bone in the left ankle, to "freeze" the ankle and prevent the characteristic polio drop foot, found that her left leg grew more slowly than her right leg. So she was taken back in for a second surgery, and her right knee was stapled to stunt the growth of her right leg, a procedure that was partially successful.

Sharon Kimball, who got polio at summer camp in 1953, when she was nine, was taken in to surgery to cut loose a piece of the tensor fascia lata from the upper thigh, split it into two parts, bring one part up and tie it to a rib, and take the other part across her abdomen and tie it to her opposite hip arch. The idea was that this procedure would stabilize her torso to compensate for her weakened stomach muscles, so that she could lift her legs more easily to walk. Although the wounds healed, she said, the surgery wasn't especially successful, "unless you always intend to inhale. When you breathe in, the rib cage pulls back. But you also have to exhale." So, eventually, her surgeon suggested she wear a girdle.

For a curvature of her spine, Sharon was put into a body cast for a couple of months. This was done by suspending her from her head to stretch out her spine, then putting on the plaster cast from her chin to below her hips. In order to eat, she had to stretch her chin up over the cast, doing which, her doctors explained, would stretch out her spine every time she ate.

After a few months, she was taken out of the cast for surgery, which involved chipping out little bits of pelvic bone and jamming them in between her vertebrae. One surgical procedure fused her lower spine; a second fused her upper spine.

Unfortunately, several months after surgery, her body cast cracked; the doctor suggested Sharon's mother patch it as best she could, and so her spinal fusion did not heal properly. She was taken in for surgery again and spent the next five months in a cast in a hospital bed. When she was discharged from the hospital, having been in bed for a year, of course she couldn't walk at all — though, in time, she taught herself to walk at home, pushing a chair around the kitchen.

Barb Johnson, who had polio at the age of three, had her first surgery at age five — for what, she doesn't know, although she has scars along the sides of her feet. She had her second surgery at age ten, to have pins inserted in her left knee to slow the growth of that leg. For her third surgery, she had a "V-fistula" to increase the rate of growth in her right leg. This was done by taking a vein and attaching it to an artery to enhance the blood flow in that leg. A couple of years later, she had surgery to undo the V-fistula, because it was judged to be putting an undue strain on her heart. When she woke up from the anesthetic after one of these surgeries — she doesn't remember which one — she does remember that the first thing she said was, "I'm not crying, Mom!"

When she was 15, some surgery was done on the bones of her right foot, and something was done with the tendons of that foot to try to give some lift to her toes. When the toe surgery failed, she returned to the hospital to have a bone chip taken from her shin, to be fused into her toe to keep it straight. Now, "even though the surgeries were successful," she says, she walks with a slight limp, has different-size feet — she wears a size six shoe on one foot and a size four and a half on the other — and different-length legs, and she tends to stub the fused toe quite a lot. "I think I got through high school pretty well," she says. "I didn't date, and I didn't go to school dances … but otherwise, I did pretty much everything everyone else did."

I think about these stories, and I thank God my parents didn't let one surgeon after another try his luck on me.

From the book A Nearly Normal Life. Copyright © 1999 by Charles L. Mee. Reprinted by permission of Little, Brown and Company Inc.

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AUTHOR BIO:

Charles L. Mee is a playwright and historian, and the author of more than a dozen highly praised books. He lives in Brooklyn.

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