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My Withered Limb

Why I Chose It: Michigan Quarterly Review Intern Lillian Pearce introduces Tobin Siebers’ essay “My Withered Limb ” from our Winter 2021 issue.

“To be crippled in America is not the American way.” 

In Tobin Siebers’ “My Withered Limb,” Seibers  gives us an image, a flicker, of what his life is like living with poliomyelitis. He begins by bringing us back to when he was two years old and first diagnosed. Siebers speaks candidly about his experiences; he does not attempt to comfort the reader by belittling his pain. “I am the luckiest in my acquaintance—lungs intact, no arms affected, one leg not two—except for everyone in my acquaintance who was not struck down.” 

As Siebers details the timeline of his life, we are exposed to his earliest memories of physical therapy, his obligatory solitude and his acknowledgement of how history treats the disabled:  “History is not on our side. Neither is God. He will not pluck a rib from me and set it free as womanly flesh.” Speaking about illness is a difficult thing to do. As Siebers states, “We live in an age some have called the Age of the Victim, where we all want to be identified with the long suffering, as long as we aren’t really in pain.” Such an age guarantees naysayers, people who oppose those who are sick for shining light on their sickness. In the telling of his individual experience, Siebers resists this condemnation beautifully. 

Siebers tells us who he is without shame. His writing provokes sincere reflection and confrontation from the readers while simultaneously providing us a piece of him—of his wit, frankness and truth. “I am not like any of you, and I don’t want to be like any of them. I am who I am.”

My Withered Limb

I am told that most people require an act of imagination to tell their right side from their left. My wife Jill, on whom I rely in matters of the imagination, transports herself to another time and another place and another body. She imagines herself a young girl again returned to her first school where they lined up the children with their left side to the curved wooden wall of the gymnasium and their right side to the open court. My daughter has been tutored by experts, like so many children today. The left hand, she tells me, is the one that makes true the letter L with index finger and thumb. Hold a hand aloft and know yourself. 

I require neither trick of experts nor transport of imagination to tell my right from my left. My withered limb is my compass. It points right infallibly, although I fear sometimes that the meaning of rightness is hobbled by it. I think of it as my chicken-bone leg because it has grown longer over time but not thicker and looks like a leftover on a plate. It is meatless, thinner at points than the wrist of my right hand, and deformed by years of exertion. The neat little cap that most people know as their ankle begins where it should on the inside of my foot but exits where it shouldn’t on the outside at the Achilles tendon. To the untutored eye, it looks as if I have no ankle bone at all. My toes are curled under, some beneath the others, the toenails thin and milky white, like a newborn’s, always with rotting skin. I know which side is my right because this is what God has attached to me.

Poliomyelitis struck during my second year of life. It struck down a lot of small children and adults that year, the same year Dr. Jonas Salk perfected his vaccination, and wide-scale immunization began. The vaccination didn’t get to me in time, but I have a small consolation. I am the luckiest in my acquaintance—lungs intact, no arms affected, one leg not two—except for everyone in my acquaintance who was not struck down. 1955 knew one of the hottest summers on record, and heat breeds polio. I was in the kitchen with my mother. Chocolate chip cookies were sizzling on a flat pan in the oven, the linoleum floor was cool, and I could not get up off of it. The doctor said I was only pretending. My mother said I wasn’t that kind of child. Later he ate his words and made the diagnosis. They took me to the hospital and put me in quarantine. I screamed at the slammed door all night long, “Daddy! Daddy! I want to go home!” On the other side, my father listened to my muffled cries, giving him his first taste of impotent rage. Me, too. Speculation was that I had caught it at a backyard cookout where fish guts were too much in evidence. My mother also remembered finding me playing jacks in the dirt on the corner of Eden and Whitney. She should have known better, she felt. Or maybe she should have breastfed me. That’s what the doctor said.

This last bit of history I report by hearsay. The rest of what I will tell you I know because I remember it. I will try not to wallow in self-pity, fool you with false machismo, or get too philosophical—all temptations when you are exhibiting your own wounds—but I will likely succumb to all three. This is because what I have to tell you is understandable only in these terms. There are no other models of explanation, at least not in the America I know. To be crippled in America is not the American way. In a country where image is everything, it is hard to find an example for growing up crippled and hardly worth it when you do. The icon of the cripple is paralytic, a double-edged sword, but we desire role models all the same. They tried to make one of FDR last year, setting him in stone upon his wheelchair, condemning him to a double immobility. A wheelchair made of stone is an interesting object for any paralyzed person to contemplate. My example was Chester, the crippled sidekick of Marshall Dillon in Gunsmoke. Not often but often enough, throughout grade school, “Chester” was my nickname. Boys from strange neighborhoods who made incursions into ours would mock me across an open field or yard with exaggerated stumbles while yelling in their best Western accent, “Mr. Dillon! Mr. Dillon!” That should have made me the Marshall, but my own hobbled gait proved that I was more the sidekick than they.

I was a role model myself for a short time. Never the exalted poster child for the March of Dimes, I was nevertheless the poster child of choice for the newsletter at my father’s workplace. I don’t know what effect this had on other polio victims. I still have a picture of myself in physical therapy with Dr. Veracka, whom I remember most for the electrical tickles he gave me and his surprising bow ties. I am sporting my favorite T-shirt of the era, featuring a drawing of Pinky Lee, another bumbling sidekick of a Western hero, this time of Roy Rogers, who is exclaiming, “Yoo-Hoo! It’s me, Pinky Lee!” In my own caption, I am informing Dr. Veracka, “That tickles!” When he wasn’t using electrodes on me, he would run a closed ball-point pen against the bottom of my foot, the underside of my knee, and other tender spots. I liked Dr. Veracka and much preferred this trick to the technique of other doctors who used a safety pin to jab me and still do to this day.

When I was twelve I made the headlines again. It was my last time as an exemplum for the lame. I was on the frozen Fox River with my brother and friends. We were making holes in the ice. The preferred method was to find a very large rock, run out onto the ice, and dash it against the surface. My brother bragged that he was going to make the biggest hole in the ice. But his rock was too big to handle, and he threw it down at his own feet. The rock broke through the ice with a splash, and so did he. While the other boys gawked, I ran over to help him out of the fast and freezing waters. He was already on his way to safety and only required my hand on his wet mitten. Nevertheless, the headline, “Kaukauna Boy Pulls Brother from Fox River,” fed to the newspaper by the mother of a cowardly witness, made me the hero, although the article added a cautionary note in its final sentence about the limits of hobbled heroism: “Tobin has polio of the right leg and fortunately was relatively close to his brother when the accident occurred.” To this day, I remind my brother when he gets testy that I saved his life. “But only because you were relatively close,” he retorts.

I wonder whether my fellow handicappers identified at the time with my brush with fame, whether they found some consolation in my appearance on a small world stage. Perhaps they viewed it with the same irony that I do now. Probably not, since irony requires a certain knowledge of the self, and those searching for images of self lack this knowledge or they wouldn’t be looking so hard. 

The human eye is fascinated by the powerful lines of the hero. We love in America what is beautiful and perfect and healthy. We hate the rest and tolerate it only with unease. But the human eye is fascinated as well by the broken curves of the cripple. The latter is actually the more natural impulse. The unfit die, Darwin found, when they are made visible to the predator. The cruel eye of the lioness on the hot savannah targets the zebra whose wobbling gait breaks the dizzying pattern of black and white, and he falls prey to her hunger and ferocity, scarlet splattered on his stripes at the feasting. Human beings have no hunger for their own kind, lame or not, but their eyes are no less cruel, even when they are trying to be kind. An armless man enters the elevator where I am standing. It is winter, but he is wearing a sleeveless T-shirt, his blunt, fleshy fins protruding to either side. I understand immediately that he stands atop artificial limbs because he is covered in sweat and breathing hard. The exertion of movement is so strenuous for him, so beyond the human body and its capacity to cool itself down, that he requires no protection against the cold and must pray at times for the frost to form. I stare at him transfixed and then look down at the floor quickly when he meets my eyes, like everyone else in the elevator. The key is the “like everyone else.” I have been rendered instantly more normal by my friend’s presence. We are never more normal than when we catch sight of a cripple. This applies to the fit and unfit alike.

A week later I am walking into the building, jammed with people, where I have my office. Walking just ahead of me is another cripple, limping exactly with my trademark rhythm, rocking from side to side, like a metronome. Now we are two. Tick tock, tick tock. Into the door we go. Tick tock, tick tock. Down the hall one after the other in a row. Tick tock, tick tock. One cripple is invisible compared to two cripples. Two cripples walking in a line are a comedy act. We are today’s show. He doesn’t know I am behind him, but he knows something is wrong. The people crowding past him and streaming toward me have that strange expression on their face, an expression that he and I know only too well, but what has caused such an epidemic today, he wonders? Finally, he looks over his shoulder, sees me, and figures it out. “Take a hike,” his look tells me. The same message he reads on my face. I have never had another cripple seek me out for company in a crowded room, the way women flock to women, men to men, children to children, and human stripe to human stripe, whether black, white, yellow, or red. We are strangers to each other. 

The solitude of the disabled is crushing. We are barred from gathering among ourselves by the laws of human physics, which declare that gravity exerts five times its influence where two cripples stand in one place, ten times its influence where four of us gather. All objects slump close to the horizon and threaten to crash to the earth where the burden of weight finds its final rest. Gravity is shifting, but there is no danger of earthquakes. No faults will crack and churn the earth. A new landscape is in the process of being formed, and it has its own vastness and glory, like the beauty of the western states of America where the land is low and the sky has more air to fill with light. And yet the upright and the healthy fear the leveling of the horizon. They are afraid they will be brought low themselves and swallowed by the dirt. They forbid our gathering with looks and ridicule; we accept their judgment and drive ourselves into seclusion. A motorized wheelchair, its withered inhabitant inclining forward in determination of movement, inches snail-like along the wall of a hallway crowded with people. They are gesturing and telling stories, laughing and arguing in a celebration of everything human, but not one of them will notice, let alone speak to, the boy in the wheelchair who waits with virtuoso patience for the human sea to part for him. His inertia immerses him day in and day out in the colors and details of other human lives, but he is always alone. 

People see the crippled other as other than themselves no matter who they are and experience irony at this fact only after repeated bouts of self-consciousness. The more immediate response is revulsion that can lead in a fraction of a second to real violence. Every disabled person has been the victim of it at one time or another. We live in an age some have called the Age of the Victim, where we all want to be identified with the long suffering, as long as we aren’t really in pain, so let’s be clear for a moment about what history teaches us about the disabled. No human group has ever been so subject to violence, none so marginalized. In ancient Greece we were left to die on the cold mountain hillsides, in Africa we were food for beasts, in Europe dropped down a well. People forget the Nazis perfected their death machine on the disabled before they moved on to the Gypsies and Jews. Visit an orphanage in any civilized country today, and see who is abandoned there: the deformed, the maimed, the diseased, the mentally impaired. 

A white man will lynch a black man to favor his own color. A man will rape a woman for the sport of other men. Nations will destroy other nations for no reason other than self-love. It is only a matter of turning our kind against their kind. The disabled fall out of the orbit of mundane prejudice because everyone agrees about their contemptibility: white men beat up white cripples, women of all kinds and colors desert their own children if maimed, the only nation of the disabled is the nation of the abandoned and the dead. History is not on our side. Neither is God. He will not pluck a rib from me and set it free as womanly flesh. 

So much for the truth. But since this truth comes with heavy doses of self-pity, I say, “Down with the truth.” Let no one know or think about it. Pity is more loathsome to the cripple than anything else. We have spent all of our lives trying to be normal, trying to pass the test, trying to run with the pack, to be liked and not pitied. To show self-pity is to add defect to defect, and more defect we do not want. That is why you do not see much of it. No special favors is the rule of the day. Gym class was the only time as a boy when I could remove my brace. They said my street shoes would ruin the gym floor, so with delight I donned tennis shoes like the other children. The morning exercise was to leap over a jump rope, time after time, as it was raised higher and higher. No problem at the lower levels. But the higher levels presented a quandary. If I pushed off with my dead leg and led with my good, I would fall on my face in front of everyone. If I pushed off with my good leg, I would land with full force on my bad leg and hurt myself. Of course, I could jump with both feet at the same time, but that would not be leaping, and leaping I wanted to be. So I leapt and cracked my bad ankle against the floor. Later in the office, where the call to my mother was being made, the gym teacher explained to the principal, “They want so to be like the other children and don’t like to be left out.”

And so for years I went on forced marches, stumbling for miles and miles. When my father asked if I wanted the family car, I said my brother could have it. I took the stairs and shunned elevators. I cut my own lawn, hung my own storm windows, dangled on ladders, and stood on the roof. I was the first to give up my seat on buses and the subway. I still walk ten feet ahead of my own family when we are en route anywhere, leading the way and setting the pace. 

But I have been fooling myself. It has all been an elaborate sight gag staged for my own ego. And I am beginning to pay the price for it. Years of overexertion and bravado have taken their toll on my muscles and joints. I first noticed it when I had small children. Children need to be carried. I could once carry a suitcase for a mile, if I had to, through sheer determination. But I could not carry a two-year old for three blocks, no matter how hard I tried, because I need my arms for balance and the added weight turns my legs to stone. I especially could not carry children up staircases, this being one thing they most need you to do. I began to notice that other people were picking up my children and carrying them around. Then I found myself begging out of evening walks with the family. Ladders became fearsome objects. Two-story house tours at dinner parties are no longer fun. My backyard is currently full of unraked leaves. My daughter raked the front lawn two weeks ago. The hoax is over.

I believe I have been in denial for forty years and even now invent little lies to explain my “new” condition to myself. I know how it happened to me, I think. It was because my lucky shoes wore out. I had them for ten years, and they made me unstoppable, but the minute I threw them away, my legs gave way. Or, perhaps, it was those round silver panels embossed with the blue wheelchair that you now see next to so many doors. I started to get lazy, and I pushed them whenever I could. They open the door automatically for you, and you walk through like a king. But they also do something else. They cut the legs out from under you. I pushed that panel when I didn’t have to, and I didn’t realize I was placing an order for my own wheelchair. 

It looks like I am going to be needing some help with my life. The leaves keep falling from the trees, and the grass is growing by the minute. There are things upstairs that I need when I am downstairs, and vice versa. How to go about asking for help with dignity? How to accept charity when it is offered? Twenty-five years ago I witnessed one of the most bizarre lessons in charity I have ever seen. I was walking in the street. It was a sunny January day but bitterly cold. A blind man was standing with his cane on a busy corner, hoping to make a safe crossing. He was hatless, had short-cropped hair, and his large ears were turning from blue to bloodless white. I walked over to him and asked if he needed help crossing the street. “No!” he said bluntly. So I crossed and left him behind. But I was feeling a little worried about him, so I looked back over my shoulder to assure myself. Someone else was helping him cross the street. I paused to watch them make the crossing. His savior left him and pursued her own course. Then I saw the blind man position himself to cross back to his previous location. People came up to him and offered assistance. He refused them. Then he accepted someone and crossed to the other corner, where within moments he repositioned himself to make the crossing again. I watched him replay this little drama until my own endurance failed against the cold. He had made a ritual out of charity. Those who thought he was powerless and stopped to offer their help would discover who had the last word about power. I now understand this man, but I don’t want to become him.

I am reading the Handbook on the Late Effects of Poliomyelitis for Physiciansand Survivors. Perhaps it will teach me something about my current condition. It is full of valuable facts about polio survivors, and I am one of them. Physics: The muscles of polio survivors cannot meet daily demands, so they are regularly assisted by some “substitutive posturing.” Consequently, polio survivors work abnormally hard (2.5 times as hard as normal) to accomplish the same activity: walking, sports, etc. The added strain may result in “overuse damage.” Chronic strain on joints being used in abnormal ways often leads to early degenerative changes. Common musculoskeletal problems include osteoarthritis of the spine and of peripheral joints, scoliosis, bursitis, tendonitis, osteoporosis, myofascial pain syndromes, foot and toe deformities, carpal tunnel syndrome, and chronic postural strain to back and neck muscles producing chronic pain. Biology: In polio survivors, who already have reduced cell populations, age-related loss of cells may produce enough weakness to interfere with normal activities such as walking. Muscles weakened by polio cannot in general be strengthened by an exercise program, which may only enhance “cell death” and create “a cycle of ever-increasing weakness.” Psychology: Polio survivors often have a low tolerance for gadgetry. And yet a person who has walked normally may begin to need a cane, a person who has used braces and crutches may need to use a wheelchair, a manual wheelchair user may need to change to a motorized wheelchair, and a power chair user may need “further adaptive equipment.” These changes require an open mind. When a person’s “level of functional independence” is changed, depression and sadness are normal. Medical Ethics: Many polio survivors have been labeled “hypochondriac” or “neurotic,” have been given inappropriate prescriptions, or have been sent off for seemingly endless, expensive referrals. A frequent complaint of polio survivors is that the doctors do not appear to listen to them. Conclusion: It is imperative that polio survivors educate themselves about their condition and learn to conserve energy.

I am back in physical therapy again after forty years of freedom. My therapist is named Maryanne. She is teaching me low-impact exercises, like back extensions, hip abductions, and hip extensions, and trying to talk me into wading in a swimming pool for ten minutes every day. I like her almost as much as Dr. Veracka, even though she doesn’t wear bow ties, because she is coy and ferociously honest at the same time. When I arrive for my appointment, she meets me at the door, hiding something behind her back and smiling like a lover. It is a cane. I am hesitant to try it, so she tells me a story about her grandfather. He refused to wear a hearing aid because he was afraid it would make him look too old. “But Grandpa,” the punch line goes, “you’re eighty and you have no hair.” The moral of the story is easily applied to me: “You’re used to the way you look when you walk and probably think a cane will make you look funny. But most people already think you look funny.” I take the cane from her, even though I don’t want to touch it. As far as I’m concerned, this staff has already turned into a serpent. She moves it gently from my right to my left hand, which is surprising. I have always dreaded using a cane because I thought I wouldn’t be able to keep my right hand free. I realize that I know nothing about the physics of impaired walking, although I’ve been doing it for some time. Maryanne explains how the cane works. I make my way awkwardly around the room, trying to get the feel of the cane and synchronizing it with the steps of my right foot. She tells me to speed up, and I find I can walk as fast as I want. My frame no longer crumples at the waist with each step. My back is no longer in pain—an odd sensation since I had not realized that I was previously in pain. The pain of forty years from a wound I was pretending not to have quiets to a whisper in my body.

The self is a scar, Freud said. Everyone is a different wound healed over. But the wounds of the disabled often refuse to heal. They are not like cuts or bruises or broken bones. They are disabled wounds—that is what makes them so hard to accept by the firm and infirm alike—but they define who we are, nevertheless. My withered limb is who I am. It is right for me. This is no idle pun but flesh of my being. The meaning of rightness would not be the same for me if God had not taken my right leg from me. My leg is right because it is everything I am and everything I could not be.

I am not like any of you, and I don’t want to be like any of them. I am who I am.

I am my withered limb.