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Facing the fleshmovers.

He knew if she really wanted to, she could do it. Slowly, the attractive woman pulled herself out of her wheelchair, eyebrows arched upward, legs wobbily and heart palpitating. The man who loved her had tears in his eyes but a smile on his face. She faltered, limped haltingly to him, and did indeed walk. It didn't matter that her spinal cord was severed or that she had been a wheelchair user for twenty years, she had walked into the arms of her loved one.

How many times have we, the disabled, seen this scenario in everything from movies of the week to romance novels? We've cringed inside, rolled our eyes, and frankly gotten nauseous at the sheer silliness of it. The old cliche, right?

An epidural abscess raged in my spinal canal twenty-two years ago. At the pivotal age of sixteen, a complete paraplegic, I acquired my first wheelchair, graduated vocational rehab as a clerk/typist, vegetated for awhile at home, then met a guy I thought I could love. He was a professional, treated me with respect, and like me, loved the simplest things in life. However, what attracted me the most was an attitude I was warned against from the time I first sat down so long ago. From disabled activists to athletes and advocates, one necessity for a successful relationship was drummed into my head; I had to be accepted "as is." The man I loved couldn't accept me as a "sit down artist" twenty-four hours a day.

It was the little things that drove him crazy. He missed being able to put his arm around my waist when we conversed at parties in those little semicircles of standing people. Holding my hand as we walked, walking on a beach or trail, talking eye to eye, in fact, my merely being four feet tall all of the time seemed to weigh on him. Yet one thing separated him from other men I had dated. In lieu of the non-acceptance speech and rejection, or worse, the "I never see the chair when I see you, darling" nonsense, five words came out of his mouth that I had never heard spoken to me before. He simply said, "Let's do something about it."

I had been an activist for quite some time, lobbying to bring the reality of equal access before the law to my rural community. My nomenclature had evolved long ago. I wasn't "confined to a wheelchair," I was a rider, a wheeler, a person with special needs, and my all time favorite: a physically challenged individual. I was proud to be a survivor but was never made aware what part of my peace of mind was the result of the brilliance of my acting ability, not true acceptance, until confronted in an innocent, romantic way by my boyfriend.

One evening, he put our favorite country and western tune on the stereo and asked me to dance. For a brief moment, I felt like a little fifteen-year-old at her first prom. I could swing a mean step with my chair but he didn't want that. He stood me up with my feet flat on the floor, pressed his knees gently against mine, took a firm grip on my butt, and there I was. I only weighed about 118 and after all these years, there was still muscle in my legs. H e swayed me back and forth taking tiny steps, slow dancing for the next twenty minutes. He was merely acting like a lower "body brace," but with my head on his shoulder, I was in fantasy land. I was five feet ten and three quarter inches tall again and quite simply had forgotten what the view was like from up there. Arm in arm, (with him walking a little funny, of course) we started down this road.

We began by spending the next year, off and on, studying spinal cord injury (SCI) and gathering information solely from injured people. Sifting through everything from exercise programs to electric walking, (Functional Electrical Stimulation; (FES) we found one indisputable fact. No one injured above the level of T-12 (just below the waist) functioned as an independent walking person whether utilizing braces, crutches, or FES therapy. Undaunted, we concluded that a new brace called a reciprocating gait orthosis (RGO) might be the ticket. It possessed a built in springlike action that walked you. I wanted to walk normally, one foot in front of the other, not drag myself around. I wanted to dust the top of my refrigerator and change shelf paper on my top kitchen shelf. I wanted to stand before a full length mirror.

We had to operate under the assumption that no friend or relative would be doing back-flips in appreciation of what I was trying to accomplish. After all, they never had. Our biggest fear was facing the fleshmovers. You know, the people that operate under a variety of aliases: physiatrists, physical therapists, rehab doctors and the like. We didn't expect any handsprings from them either, but were unprepared for their ridicule. My boyfriend had studied SCI far more intently than I had. When I questioned his passion for this, he explained that he would be the one who would enjoy holding me in his arms, on my own feet, while we danced. He also envisioned sneaking up behind me and putting his arms around my waist while kissing my neck. Where did I find this guy?

He had gotten me to quit smoking and exercise regularly. He talked me into finishing a bachelor's degree in education and introduced me to the arts. Even my family became impressed but failed to comprehend the one thing he taught me that towered above all else. For twenty years there was one aggravating aspect of wheelchair use that would constantly surface in day to day living. I was never able to get back into the chair from the floor by myself. Whether I made a transferring mistake or just wanted to sit with my friends on the rug, I detested being carried so I'd avoid it like the plague. I tried to get my therapists to allow me to work at it in the beginning. But after several tries, even coming close, they would openly discourage me. It was simply not in their "program" or "agenda" and deemed unnecessary. My motivation had to be focused on moving my flesh efficiently and confidently in my pretty chrome chair. That was to be my goal. I was to be made a good sitter and skilled wheelchair wheelie popper. Fifteen minutes was all it took for my boyfriend to teach me how to climb in. My lifestyle changed instantly that day. I comparably felt I had been given wings. Why could he do it when the pros couldn't come close?

He thought it to be what he called an "embarrassment factor." I took pride in my appearance and always wanted to look good to everyone. I was never anxious to allow anyone to sit staring at me as I made my attempts to pull myself into the chair. I thought I knew how crippled and ugly I looked so I never gave it my all. I never strained every sinew and gut I had left, knowing how foolish I would appear trying to crawl back into a wheelchair with only half a moving body. I wanted it to be over. This guy convinced me he loved me from head to toe. He had helped me with every personal aspect of SCI you could think of and never flinched. I believed him, was not embarrassed, and with him yelling, cursing, and cheering "at the sidelines," slid into my chair on the first try. What a team we made.

Wheeling into my orthopedist's office, I felt just great. Clutching a detailed description of the Douglass RGO in my hot little hand, I presented it for his scrutiny. He had never heard of the brace (Why should he? He was only an orthopedist.), but devoted one whole minute to skim the material. He asked me how long ago I was injured and after receiving the twenty year answer, actually started to giggle.

"Just because you read something in a medical journal doesn't mean it necessarily applies to you, Katherine," he chastised. He spent five more minutes making me feel ashamed and stupid for asking him to allow me to try to walk a little. Depressed but not demolished, my next visit to a physiatrist was far more pleasant. No giggling or laughing, just an eloquent, "No way."

I called my boyfriend up that night and didn't believe what I was hearing coming out of my own mouth. I was hysterical. I the survivor? I the activist? I, Miss Acceptance was hysterical. I certainly never came close before. Not when I was told in a soap opera monotone that there was a zero chance of my ever walking again. Not when I couldn't propel my first forty five pound wheelchair up a slight incline. Frustrated, depressed, perhaps even a bit suicidal, but hysterical? He calmed me down, cheered me up, and helped me hatch a twofold plan.

Locating a pair of old long leg braces, (remember the type featured in the old polio posters?) that had been tried out on me the year after I was hurt, we polished and oiled them, discovering they still fit. For two months, three times a week, I attempted to drag myself around on crutches. Walking just twenty feet was like running a marathon in 90% humidity. I dripped like a faucet but he wouldn't let me give up. At the same time, we played doctor/patient scenarios to rehearse for our confrontations.

"How can I help you, Katherine?" my boyfriend would utter in his best pompous, physiatrist overtone.

"I'd like to try to walk a little and I think this brace might make it possible," I confidently responded.

"How long have you been confined to that chair, Kathy?" my fleshmover questioned.

"Twenty years this August," I sighed.

"You see Kathy, it's not quite that simple, although I admire your courage and determination. Because of being off your feet for so long, the normal development of osteoporosis might seriously cost you broken bones if you even attempted to walk on a semiregular basis. Coupled with this physically challenged position, the spasms you have, no matter how minor, would throw off your gait, affect your balance, and cause you to fall. Is it really worth the risk of breaking an arm or spraining a wrist to ambulate once in awhile? Can you imagine trying to transfer yourself out of your wheelchair with one hand? Bathing, driving, wheeling yourself

My boyfriend would sound more like a doctor than the doctors did, but he was doing his job. He would leave me shaking. He made me doubt, hesitate and stutter. If I didn't rise above the image of the "poor little girl" who wanted to walk again, I would get nowhere. I had to be prepared with great answers.

An appointment was made at a rehab clinic in Columbus with a doctor familiar with the RGO. Old braces in my hand, I wheeled in with my boyfriend, prepared for the grilling. I knew I walked terribly. If I was breathed on too hard, I would lose my balance. The cross examination started but it was a fair cross examination. No giggling, no preconceived ideas about me. When the questions about osteoporosis and spasticity flew, I handled them in one, rehearsed, breath.

"But doctor, I've been walking around on these old braces for fifteen years. If spasms didn't bother me in these, why would they bother me in the new brace?"

He never asked me to walk and wrote out a prescription for an RGO ten seconds later. He only asked that once I got good on the RGO, that I come back and take a picture standing next to him. Even my boyfriend wanted to kiss him.

The Columbus orthotist (brace maker) assigned to us had only made RGOs for preadolescent children. He told us if we permitted him to make mine, he would do his utmost to make it perfect. He took it as a challenge and made molds of my legs and pelvis that very afternoon. Six weeks later, I had my RGO. These people were anything but fleshmovers. They looked at me in a way that seemed to be saying, "We wouldn't have the guts to even try. We're behind you."

My neighborhood hospital's head physical therapist had also never heard of the brace. However, being my age, she also seemed to admire my efforts. Six months of three times a week, two hours a day, followed. An instructional videotape provided by L.S.U. Medical Center guided us.

It was damned harder than anything I had ever attempted in my life. Just trying to learn to stand in one spot, without crutches, was like tightrope walking. (The RGO is balanced to allow you to stand without crutches, in one spot, without leaning on, or against, anything. You walk with half crutches.) I didn't want to walk outside until I was good, but my boyfriend forced me to. Any excuse I had for not walking with him into a food store or restaurant, he always had an answer for.

Living in a rural area of Eastern Kentucky, I had always been locked out of 90% of the stores, buildings, parks, and the like, since my injury. Unlike the big cities where scores of stairs would loom up to the entrance of office buildings, here in Pikeville, it would only be a stair or two that would bar my way. That's what helped motivate me past those people who move flesh with only wheels. I felt I was being realistic. I wanted over those two lousy stairs.

As the months passed, I walked slowly but confidently. I even received an added reward I had not thought of. My legs looked better. It seemed even passive exercise could build you up a little. A small pot belly I had completely disappeared. I felt stronger than I had in years. I still walked too slowly to keep up with my friends. If I fell, I knew I could never get up by myself. The closer I got to walking normally, the more frustrated I became. At one point, I even threw the brace across the room at my boyfriend and cursed him to the ground. He would respond by giving me a piggyback ride up a trail I had played on as a child, allow me to cry my eyes out, then take me to a nice dinner. We knew each other inside out.

The therapists assured me that I would never be able to climb stairs. My best buddy taught me to climb them backward, ascending with the guard rail in one hand and my crutches in the other. That was my personal payoff. The day I met him in a restaurant on the second level. I was ready for an oxygen tent by the time I walked up to him, but I then knew I could always do it when I had to. That's the choice that was denied me through the years. My twenty-four hour wheelchair use was decided for me, as it still is today for the thousands injured each year. I could say nothing.

When I walked up to my boyfriend's table, I thought I saw a tear in his eye. My heart was palpitating, but I did indeed, walk. The old cliche.

I am now true to myself with regard to singing the praises of standing and walking regularly to any injured person I meet whose legs are not affected by contracture and whose spasms have kept them alive. I haven't seen a bedsore, bladder infection, or backache for two years. My brace is now in New York being modified with a greater spring action to allow me a normal walking speed.

If that cure capability comes along in my lifetime, I'll be ready. And although I love my boyfriend with all my heart, I must truly thank the fleshmovers with all my soul. You see, without them there would never have been a metamorphosis of a complacent little girl who would never make waves, to a ballbuster whose conscience can never again have an on/off switch.
COPYRIGHT 1990 National Rehabilitation Association
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1990, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

Article Details
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Author:Thacker, Kathy
Publication:The Journal of Rehabilitation
Article Type:editorial
Date:Jan 1, 1990
Previous Article:American College of Sports Medicine Resource Manual for Guidelines for Exercise Testing and Prescription.
Next Article:Survival, struggle, and success.

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