The Brace God of India

by Melanie Reitzel


I still wear a brace. So does the new technician who calls me from the waiting room of the orthotic office. He has a limp-each step a lurch and sway, hard to ignore.

I'll be damned, I think, another polio, as we call ourselves.

I was two and a half when I got my limp in 1950, two years before Jonas Salk began testing his vaccine against the virus.

Polio, or "infantile paralysis," as it was also called because most of its victims were children, was at its peak in the United States in 1952-that year's epidemic struck 59,000 people and killed 3,000.

The epidemics hit in the warm months. In the absence of a cure, prevention seemed essential: Movie theaters, camps, and swimming pools were closed; public drinking fountains were avoided; children were kept at home. Public health officials advised cleanliness, healthy meals, and rest; no one know that a century of advances in sanitation had probably decreased our natural immunity.

Fear and shame ran rampant. Families struck by polio were shunned. Some families hid members who limped or were deformed; a few abandoned their children in hospitals and never saw them again. Others worried that polio would not just cripple their children, but would prevent them from marrying or finding jobs.

Many children recovered, seemingly unscathed. Some adults contracted it...and also made a good recovery.

You know quite a few polios: Alan Alda, Ben Bradlee, Arthur C. Clarke, Judy Collins, Francis Ford Coppola, Mia Farrow, Frida Kahlo, Dorothea Lange, Robert McNamara, Jack Nicklaus, Itzak Perlman, Wilma Rudolph, Dinah Shore, Donald Sutherland, Emmett Till....

And, of course, FDR, although he tried to hide his disability...and retrospective studies indicate he may have had Guillain-Barré syndrome.

His annual Birthday Ball eventually turned into a fundraiser for the March of Dimes, the first mass-culture fundraising effort against a disease. And the proceeds eventually helped fund Dr. Salk...and paid for my first brace and part of my hospitalization. Today, the March of Dimes works to prevent premature births.

I notice my technician's brace: a black Velcro-fastened, foot-to-knee bit of hardware over his left pant's leg. No big deal, that's temporary. On his right leg, however, I see he's wearing a knee-to-foot brace: two metal sidebars bolted to a molded plastic foot-bed show between hem and shoe. That appliance is solid, made-to-order, and permanent. Attached to the bottom of the shoe is a lift; his right leg's at least two inches shorter than his left.

I remember those lifts. I needed one throughout grade school-ugly, dense reddish foam glued to the bottom of my left shoe. White bucks. Saddle shoes. Or whatever sturdy, clunky Oxfords were chosen for me for practicality sake.

In two surgeries before I was 13, future bone growth was scraped from the cartilage in my right knee, and now my legs are nearly even in length. I've avoided lace-up shoes ever since, but I still limp.
As a child, I was stared at, sometimes teased. Now, however, when a child stares, tugs at her mother's sleeve, and asks: "Mommy, what's wrong with that lady's leg?" I ask if I may explain. I smile, lean over, and whisper conspiratorially: "This is a brace. It was made specially for me to help me walk. Isn't it cool? I'm kind of bionic."

That's called reframing.

Ours is an age of increased awareness and political correctness-The Center for Independent Living, the Americans with Disabilities Act, the Special Olympics, ads like Wal-Mart's featuring wheelchair-bound shoppers, magazine cover shots of Iraq veterans wearing shorts to show their artificial limbs....

Mainstreaming has helped dilute fear down to curiosity and acceptance. A few months ago, a friend's three-year-old nephew pointed at my brace and instead of looking to his mother for answers, exclaimed to me: "Wow, that's a really big band-aid!"

My brace repairman introduces himself: "My name is Syid."

Mid-to-late forties, wire-rimmed glasses, close-cropped hair, neatly trimmed, just-graying moustache, probably East Indian. I want to get his name right; I take a stab at spelling it.

"No." He smiles and shakes his head: "S-Y-I-D."

I'm a maternity nurse, a lactation specialist-my East Indian patients have taught me that their children's names are chosen for their meaning. "And what does Syid mean," I ask, taking care to pronounce it as he did.

He stands a bit straighter, tilts his chin. His left hand scoops through the air in a small, courtly flourish. The hint of a bow, of a smile. "It means Sir."

Yes, Sir, you have every right to be proud. Despite society's kinder, gentler attitudes, those of us who grew up swinging a couple of pounds of metal, who still lurch with each step, temper our dignity with a little self-mockery-it's a preemptive maneuver against pity, an offensive play against the normal team.

Syid seems young for a polio. He must have been a child and still growing when he contracted it-otherwise his right leg would be withered, but not necessarily shorter than the left. The corrective surgeries I had at one of the country's leading centers for polio-Children's Hospital in San Francisco-must not have been available to him.

Despite good care, my first hospitalization made me both curious and fearful. From my wheelchair, I looked up at the rows and rows of people in iron lungs-those huge body-length breathing machines, tubes of steel that whooshed and hummed all day and night and that swallowed all but the heads of their inmates. I used to wonder: "What happened to their arms and legs? What do I have to do so that doesn't happen to me?" I became a very compliant patient-most polios did.

After six months in the hospital, I lived for a year with my father's parents-managing my daily physical therapy session would have been a strain for my single, working mother.

One day, my grandfather, an internist, took me along on a home visit. There, I saw a woman sitting in a rocking chair, holding a newborn to her breast. I didn't know what they were doing. "She's feeding her baby from her breast," Granddad explained, and I remember feeling how much I missed my mother.

Granddad talked with enthusiasm about his satisfaction in diagnosing a patient correctly and helping people heal. As a patient, in waiting rooms, I tried out my own diagnostic skills. I sneaked peeks at the others in braces or casts or wheelchairs. I looked up as the doctors pointed to the backlit x-rays of my mismatched bones, and tried to guess what they would want to do in my next surgery.

As a result, I became comfortable and curious in hospitals-and, eventually, inspired. I can point to the very vein in my left wrist where my nurse started my IV when I was in labor with my first son. As she taped it in place, I told her: "I want your job."

Syid asks me how I am. I say I'm fine, but point to my brace and tell him I've popped a few rivets. They're copper-too soft and weak for me. Other technicians have told me that I load my brace. How nervy, you actually use your brace, then it wears out and we have to make repairs. I'm not going to get any of that from Syid, as he uses his brace, too.

"And how are you," I ask. The temporary brace makes it all right to ask. In some unwritten rule, I've learned, people feel more comfortable asking about something temporary, something that doesn't look like a permanent disability.

Syid points first to his left foot, the one in the temporary brace. He shrugs: "I pulled the Achilles tendon."

He then uses both hands to reach around to the back of his brace and unlocks his knee joints so his leg can bend when he sits down on the typical black rolling stool of the health-care practitioner.
"This, however, is post-polio; I have a right-leg paralysis." This comes across as both challenge and explanation.

I nod and smile. I point to my left leg: "This is, too."

He furrows his brow a bit, pulls his chin in, the way people do when they're a little surprised. I guess he hadn't yet read my chart-there are, after all, other reasons people wear braces. Maybe he hadn't scrutinized my limp as closely as I had his. But surprise quickly turns to camaraderie, Syid leans forward: "I am 45. There was vaccine then, but not yet everywhere in India."

"I got mine in 1950." I got mine- listen to me, as if we were talking about our possessions.

"You know what is crazy," he says, forearms on his thighs, "what some people believe. In India, some said I must have done something bad for God to let me get polio. It's fatalism."

He leans back and wrinkles his nose as if smelling something distasteful.

"I don't agree with it. Some people think God is in control of everything that happens to us."

"Some people in this country think that way, too." I say. Then I point to my forehead: "I thought God gave us brains so we could solve problems like polio-"

"Did you know," he says, shaking his head, "there were between one thousand and fifteen hundred cases of polio last year?"

"Ignorance," I say, "helps keep this virus alive. And it's not just a Third World problem-I've had patients who have refused all vaccines for their children. What do we call that, magical thinking?"

"What will it take to end polio, to eradicate it, like smallpox?"

That's not a question either of us can answer.

I take off my left shoe, and Syid leans over and examines the rivets attaching my sidebars to my foot-bed: "You're right, the failed rivets are copper. I will put in stainless steel. As the old rivets fail, we'll replace them."

That's it. No scolding for actually walking in my brace. In fact, Syid tells me he is training for his certification as a brace maker. Apparently, he understands that my job is to use the appliance; his is to make or repair it.

I'd worn a long skirt so I could remove my brace quickly, without having to undress. Again, that dignity. I reach up under my hem and undo the straps and buckles and then slip the brace off and hand it to him. Then I wiggle my right shoe under my left foot to protect it from the cold linoleum floor. Today's a good day; my leg's actually pink rather than the more usual cold blue.

Syid takes my bent brace from me and clicks it straight, locking the knee joints-they were developed after WWII by the Germans, so many wounded soldiers needed to be braced. Daily, I thank German engineering for inventing this option-and Blue Cross for covering it.

Then Syid reaches out and props my brace against the wall. He stands up, reaches down, and manually locks the knee joints on his brace in a two-handed maneuver. The diagnostician in me wonders: Who made his brace? Why the hell doesn't he have the automatic locks and the hip trigger release that I do? With one hand, I pull the lever: both joints unlock and I just sit down. When I stand, I straighten my leg and both joints lock: Look, Ma, no hands.

Syid goes back to the workroom with my appliance. I sit and knit, read old issues of House & Garden, make out my shopping list.

I hear lots of pounding. Out with soft copper, in with steel screws.

When he returns, my repairs completed, I ask if he would mind talking to me about his experience sometime. I want to give him an out, in case he doesn't care to elaborate.

He launches right in: "Polio doesn't keep me from doing anything. I am highly educated."

His hands fly up as if he is showing me how he has caught the biggest fish possible. "I have a master's degree and a doctorate in engineering. I hold a patent in digital imaging and am a certified orthotist. Next, I will certify in prosthetics. I was a champion swimmer in college, on a normal team, not a disabled team, in a school of 20,000 students. All this, I have done. The only trouble I have had in life is with girls."

Here, now, the confession. Something about being a polio, a little damaged, therefore, different, removed, and safe-makes people, even another polio, feel free to confess: "My only trouble? Getting wives. In India, you don't date. You don't go out and meet girls and choose for yourself; marriages are arranged."

I think about how I met my husband. He had been the only boy in seventh-grade cotillion not afraid of my brace; he didn't hold me at arms' length. He made me laugh. We dated in college, had three engagements-to each other-and finally married a year after graduation. I had dated other men off and on through high school and college-a little suspicious of the motives of anyone who pursued me too earnestly...and a bit resentful of men I was attracted to who did not. While I loved my husband when we married, I also believed no one else would have chosen me.

After 34 years of marriage, we'd started holding each other too often at arms' length, and I told him I couldn't be married any longer. He asked if there was someone else. "No," I said. Then I corrected myself: "Yes, there is. Me."

If I was to marry someone again, I would want more than to be chosen; I would want confidence in myself to choose.

In part, I credit my career in nursing for giving me that confidence. At some point, I realized I was a success at something: working with nursing mothers and their babies.

Does my patient notice my brace or my limp when I walk into the room and introduce myself? Rarely. She just wants someone to help her baby latch, to make the pain in her breasts go away. And if she does notice? I explain about having had polio...and by doing so state my case for vaccines.

I tell Syid a little about my online dating experiences after my divorce-what I call My Year of Serial Frog Dating. Computer dating enabled me to both screen potential dates and demonstrate that I had some smarts before I limped into Starbucks for a coffee date.

After a year of browsing, I read the profile of a man named Wyatt. He seemed grounded, self-assured. I might have a prince here, I thought, and contacted him. He responded, and a flurry of e-mails and phone calls followed.

One evening, on the phone, before meeting in person, I told him about having had polio, needing to wear a brace-you don't mess with princes. His pause was palpable, then he changed the topic and the conversation continued. He didn't seem fazed, but I wasn't sure...and I was afraid to ask.

We met for dinner a week later, and then we closed down our computer dating accounts.

Soon after, Wyatt and I were sitting on my couch and he reached over and patted my left leg, that is, he patted the brace on my left leg. I must have flinched a bit, because he said that after that phone conversation he had researched everything he could find online about polio and braces. My stomach churned. Oh, God, here it comes; he can't handle it, after all.

Then he explained: "Melanie, I didn't want anything to come between us, least of all my ignorance." That was three years ago. Thank you, Wyatt, for your substance, for our life together. Thank you, Chemistry.com.

Syid continued, pointed at the air. "A man who comes back to India from America, educated as I am, he is like a god. Half of India is illiterate. Men with education are very desirable as husbands."

Pause.

"But this..." he stabs now at his right leg, "this is not desirable."

My stomach tightens; I'm looking into an emotional mirror at anger and the shared desperate need for pride in accomplishment.

In a phone conference some years ago, a writing teacher asked why I was so driven. I was glad he couldn't see me flush-do I thank him or apologize? I usually assume such remarks are criticism. Mea culpa, mea culpa, mea maxima culpa. I could never be Catholic; I assign myself enough guilt, I don't need God's help, thank you. He said: "Go a little easier on yourself, Melanie. Develop some patience."

At the wise old age of 18, I announced to my mother that I didn't think having polio had made all that much difference to me-other than the obvious, the physical-that I really hadn't been affected by it, personality-wise.

Mom responded very quickly: "Don't fool yourself."

Graciously, she didn't accuse me outright of naive denial; she subtly let the media do her work for her and sent me a newspaper article that described the polio personality-we're Doers-developed from years of being told by others and eventually telling ourselves: Get normal; act normal. Basically, we're Type-A people stuck in Type-B bodies. How's that for essential tension?

One night when I was in junior high, I looked at my mother all dressed for a night out on the town with my stepfather. Mom with her long, gorgeous (and matching) legs, her feet (again, matching) in spike heels, and I thought: "Melanie, get your own game."

And so, here I am, at 61, with a rewarding career, 15 years of college and nursing school, with graduate school in progress-Syid, would you say we are driven?

He continues: "My first wife walked a block ahead of me because she was ashamed to have people see me with her. I divorced her within 35 days."

I remember how my ex would refuse to park in a handicap spot-even though I have a placard-while I went into a store. He'd drop me off and go park anywhere else in the lot. Did he think parking in a blue zone reflected on him? Did he think I was a slacker?

I never got an answer.

Once, my youngest and I were running late for a movie when a spot in a blue zone opened up. I slid the car in and whipped out my hangtag. "Mom," he said, pumping his fist: "it's so cool you're lame!"


He now has a tattoo on his calf of a Victorian iron gate-to remind him of the challenges his mother faced and, as far as he and his brother are concerned, as much as possible, overcame.
Syid continues: "With my second wife it was a little better, although I had to walk back and forth before her parents-back and forth, back and forth-before I could meet her. They even gave me advice-can you imagine?-suggestions on how I could walk better."

We laugh and shake our heads. Right, no problem, let me just dial up Lourdes-I'll get right on that.

"It was like an audition?"

"Yes, exactly! An audition!" He bounces a bit on the black stool: somebody gets it.

"Like the way they run the dogs in front of the judges at the Kennel Club shows?"

"Yes," he laughs, "just like a dog. Just like a dog!"

Only another polio could say this and understand how humiliating, how stupid...and now we're allies.
Feeling a little superior, we deplore such ignorance and lack of respect. All the boys who stared at me in grade school, high school, college. All the technicians, physicians, therapists who examined me, stripped down to underwear, brace, and shoes, who made me try to climb, bend, kick, or swing, who seemed personally disappointed by my paralysis. We would never treat others this way. Oh, Syid, you and I-so defiantly wise.

Syid continues: "My second wife and I div

orced for other reasons. I have three daughters, one from the first marriage, two from the second."
I know the tactic-how to convey normalcy without explaining-or screaming. He is saying: If he has daughters, he is sexually successful.

I remember how I loved being in public when I was pregnant. "See?" my body said, as I pushed the cart through Safeway, shoulders back, maternity smock draped a little more obviously over my belly as I paused before picking out apples: "Someone wanted me. I've had sex. My body works."

"I do not care so much now," Syid continues. "I do not need to marry." He wipes an imaginary slate clean with his arm. "I am not desperate. If I meet a girl I like, who likes me, I will not beg, I will decide."

The man whose name means Sir turns his head with disdain, and with that gesture, rebuffs hundreds of people in his life. He pushes his glasses up, sits up straight on the stool, and lifts his chin. I can see the outline of his shoulders, square and strong, muscles taught. His stomach is flat, his neck well developed. A champion swimmer: more than normal, exemplary. The upper body becomes strong, it compensates for what the weaker lower body cannot do.

My upper body developed as well. I used to swim, too-my body moving almost normally, my arms pulling me through the cool water. One leg kicking, the other one unburdened, not even trying, disappointing no one. My college roommate told me that after her father and I met, he told her: "Good God, I've never seen such well-developed shoulders on a woman before."

Was this an accomplishment or was I a freak?

Maybe just a little ubernormal.

Syid tells me that in six months he will return to India.

"Braces there are terrible," he says. "The prosthetics, too. With my degree and experience here, I can make much better devices than they have. But first, I will go to Germany and learn from their brace makers; Otto Bock is the best in the world."

"Then you'll make better braces for all of India?"

He smiles, "Yes, for all of India."

The scope of this grandiose, Type-A plan pleases us. I think, "Syid, the Brace God of India."

"How do you like your hip trigger," Syid asks as I put on my brace, sneaking it under the folds of my long skirt, deftly fastening the straps and buckles, barely having to look. I don't like taking my appliance off in front of someone, or putting it back on-even in front of another polio.

"It's perfect," I tell him. "At work, I need to be able to sit down or stand up with a baby in my arms."

He needed this, too; he had been unable to stand or sit with anything in his hands.

"It's a very good design," he says. "Very clever. Yes."

I'm sure this innovation, the contribution of one orthotist who never said, as others had, "You post-polio patients are so damned picky," will make its way to Syid's own brace, and eventually, to those of his patients in India.

I know I'm foolish, but when Syid is making a brace somewhere back home, I want him not to be paying attention to anything but helping another patient walk and do his or her job more easily. As he incorporates the designs of a post-WWII, rehabilitated, German attitude toward disabilities, I want him to be worried about nothing but doing good work.

And I want some woman to realize he is so much more than just a man with a limp. And I want her to surprise him with the man she can see.



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Contact the editor: Howard Junker