A Matter of Dignity

by Andrew Potok

  “I bet it was a whole lot easier when all they did was make a peg leg.”

  “As a matter of fact, sometimes a wooden leg is still preferable,” Dave says. “I made one for a farmer because it was perfect for walking in furrows and plowed fields.”

  At Danny's next appointment, they try on the new check socket now attached to his old prosthesis. For Danny, putting the leg on is an exhausting process. He puts a big sock on over his stump, all the way up to his crotch. Then he takes a valve out of the socket and feeds the sock into the hole and pulls it through. The valve goes back inside so that his stump is held in place by suction.

  “Do you have to go through all that every time you put the leg on?”

  “Yeah, but the prosthesis stays in all day unless something breaks the suction. When I get in my car, one leg in, one leg out, that'll sometimes do it.”

  Dave Loney glides around Danny on a rolling chair, observing, prodding, reaching for a tool, adjusting. Danny walks all around the room, then up and down the hall. “It hurts,” Danny says.

  “Yeah,” Dave says. “I can see it.” He turns to me. “It's blanching right there and that's my clue. It tells me that the femur, the long leg bone, which was cut for the amputation, is pressing up against the side of the socket and all the blood is being flushed out. Sometimes, the weight of the leg pulling on it creates negative pressure. The socket's letting air in. And this,” he says, “is one reason why the transparency of this diagnostic socket is so important.” He fiddles some more. “You never get a very good seal with these check sockets.”

  “It feels a little short too,” Danny says.

  “That's easy to fix.” He extends the rod. “Are you feeling pulling in the back? If I open it here, you'll drop in more and then I'll come back and tighten it.”

  Danny walks from one end of the room to the other. To me, the sound of his steps seems even. “It's a little snug,” he reports. “It torques me counterclockwise.”

  “You have so much limb length that you don't need all this weight on the ischial tuberosity,” Dave says. “Let's put in some padding. We also have to look out for too much weight on the pelvic bone and groin. If I get too low on the inside, then the soft tissue starts to spill out and that really hurts.”

  There is a comical edge to all this tailor talk. Instead of letting the pants out a little here, a little there, the next size up in a shoe, it's a matter of ischial tuberosities and the pubic ramus.

  “When I was fifteen, I worked in a shoe store,” Dave says, laughing. “I never saw the connection until now.”

  “Might you be more needed elsewhere rather than in rural New Hampshire?” I ask him.

  “Of course. In war there is more need, but also among populations where there is more diabetes than elsewhere, as in the Indian populations of New Mexico and Arizona. Diabetes and other cardiovascular diseases are the biggest causes of amputation.”

  “Have you ever thought of going to a war zone?”

  “Quite a bit. When we hire a third practitioner, we'll have a little more time off and I'd like to take a month or two every year to work in the field.”

  “Where?”

  “Not in places where I might be fixing people up so they could be soldiers again. I would like to go to Vietnam to treat victims of land mines. In Cambodia alone, over twelve thousand people have lost legs for this reason.”

  I ask Dave if he could have easily done something else with his life.

  “In hindsight, yes,” he says, “because the older I get, and I am now thirty-nine, the larger the list of human activities that I consider as performing a useful human service, including people who are seen as greedy such as stockbrokers, financial consultants, all kinds of professionals, not just those who can more obviously be recognized as performing a service for humanity. I guess I should include artists and writers,” he adds, smiling.

  “How did you get into prosthetics in the first place?”

  “My parents always taught us that there was no happiness in looking out for yourself—-as a matter of fact, that it was the root of all evil. My father was a missionary. When he was older he pastured a church, then ran a retreat for burnt-out church people. My mother was very involved in all this. My oldest sister was a nurse until she bought a round-the-world plane ticket, went away for six months and came back to go to mission school. All the other siblings are more or less involved in the helping professions. My parents’ philosophy was that if you want to save your life, you have to lose it, you have to give it away.”

  Originally, Dave wanted to go into medicine, but even though he was a good student, he couldn't bear the thought ofthat many years in school. He did a year in general science, then began to concentrate on human kinetics, which included classes in physiology, anatomy and chemistry. He particularly loved biomechanics, the study of human movement and the physics of motion. In his last year, he attended a lecture in prosthetics and orthotics. Even though it interested him, he realized that it required working primarily with his hands, and never having done so to any extent, he discounted it as a viable course for his life. Dave married in his last year at college and moved with Georgia to Oregon, where her family lived. There they bought and began to restore an old house and he discovered that he was not only good with his hands but loved using them. It was then he decided to go into prosthetics. “I apprenticed in a wonderful, old-fashioned place called the Oregon Artificial Limb Company. It was owned by two World War II veterans and one Korean vet, all of whom had lost limbs.”

  The prosthetists taught Dave an unforgettable lesson, namely, that to be really good at what he did, he needed above all to care, to really care. And if the job wasn't done perfectly, to do it over and over again, until it was.

  Dave learned a lot about caring and community working in that atmosphere. In the facility, founded in 1911, everything happened in one big room. The patients, mostly veterans, would come in, often without appointments, sit down, take off their pants, take off their legs, talk, smoke or read while their limbs were altered or repaired at work stations all around them. “It was a great learning environment,” he says. He then went on to do graduate work, moved to New Hampshire, pulled together various degrees and certificates and set up shop.

  “During the first five years of my practice, I could really get down on myself. I felt very stressed until I figured out what I was doing wrong, which was promising people too much. I thought I had all the answers, that a new limb would quickly solve all my patients’ problems. It turned out not to be so. For some people, the going was very slow. I had to learn to allow people to heal in their own time, their own inner schedule.”

  “What promises would you make?”

  “I often saw patients who were not in the best of health and I would promise that they would be up walking without a cane long before they actually could. Usually their difficulties began when they neglected their stumps, never touched them. A stump really needs contact and pressure to heal properly. When I put a prosthesis on these patients, their pain was enormous. They wouldn't have had the pain if they hadn't ignored their residual limbs for so long. I got better at what I did. I learned what the limits were.”

  Before Danny's next visit, Dave had taken the corrected check socket and replaced it with the permanent one, made of a flexible, high-density polyethylene plastic, softer and more pliable and thus more comfortable than the one before. To accomplish this, he took the check socket and bolted the prosthesis into an alignment jig, a series of pipes and clamps on the workbench that can capture strategic placements or parts of the prosthesis in order to preserve the relationship between the socket on top, the knee and the foot below. The jig has a yoke that lines up with the axis of the knee and actually holds that axis. Thus, he was able to capture in every plane, x, y and z, the rotation, flexion, extension, adduction and abduction of the leg. The knee was then mounted in the yoke, which holds its height and its relationship to the socket.

  After making the polyethylene socke
t with a hardened carbon fiber frame on the outside, he cut, trimmed and buffed all the edges and once again bolted everything onto it in the proper position. For those patients who want an approximation of a real leg rather than metal pipes and plastic, he would have pulled some foam over the outside of the prosthesis, carved a semblance of a leg in the foam, put the foot on and pulled a couple of heavy-duty nylons over the whole thing. And finally the leg would be done.

  I have to fight a surge of envy as I begin to fantasize surrogate eyes, a dream I don't allow myself too often, partly because it's as improbable as replacement heads. But with prosthetic legs there is reason for good cheer, for as difficult as it undoubtedly is to lose a limb, the thing can be manufactured, fitted and lo, we are almost whole again, almost as if nothing had ever happened to interrupt the flow of life. Strange to contemplate, but at home Danny has spare legs, what he calls “parts legs.” In his bedroom closet there's a pile of knee frames and hydraulic units he can tinker with.

  As Dave runs up and down the stairs to the shop, whittling, filing, pushing and pulling, Danny and I talk about being found out in our disabilities, brought out of denial, exposed. “My first above-the-knee leg was liberating,” Danny says. “I was good at it almost from the start. I have great balance, a good proprioceptive sense.”

  “Can you pass?”

  “Unless I develop a sore, which always gives me away. It hurts and I limp.”

  “Is passing important?”

  “Not anymore,” he says. “Back then, it was. The legs I used to get back then were very different than now. They were all dolled up, cosmetic, made to look like real legs. You could almost not have told even when I was in shorts. Now it's all metal and plastic without a cosmetic cover so there's no question about what it is, but I'm cool with it. I prefer less weight, which means having the stark no-frills model.”

  “What's it like to wear shorts with all the rods and bushings and hydraulics in full view?”

  “No problem.”

  “Do people stare?”

  “Just kids, but I don't mind. They respond to it as it is, a special leg. I had Mickey Mouse put all over the last one to make it more fun for my nephews.

  “If anyone had told me before the accident what was to happen to me,” he says, “I wouldn't have wanted to live like that. Now, seventeen years later, I see the whole thing with very different eyes. My life has been strangely enriched by all this.”

  “What about women?”

  “Ah,” he says, “women. That's where it really hurt. Where women were concerned it was huge.”

  “They were turned off?”

  “Sex is still an issue sometimes,” he says, “but I think just one woman was revolted knowing I had a stump. Maybe there were others but I'll never know. At first, I dreaded being naked in front of a woman.”

  I had read in a magazine Dave Loney had given me about people who call themselves “devotees” and are particularly attracted to residual limbs. The article warns amputees that sexual attraction is sometimes inexplicable. The very reason why many of the magazine's readers might be struggling with self-esteem problems, caused by the unsightliness of their stumps, is a turn-on to some others. What whips and chains are to a sadomasochist, so the remains of someone's leg are to these “devotees.”

  “Did anyone ever want a piece of you because of your amputation?”

  “Nah,” he says. “But this is Vermont.”

  Stranger still than the “devotees,” I have since read about “pretenders,” who mimic amputees, craving what they see as disability challenges and, weirder yet, “wannabes,” some of whom seem to be driven by the kind of identity issues that make transsexuals feel that they were born into the wrong body. These wannabes feel that they can only truly be themselves with a limb or limbs missing. Some actually have their healthy limbs amputated.

  Dave skips cheerily down the stairs with the altered socket. “Listen,” Danny tells him, “I've decided that I want to be six feet tall.”

  “Okay, but of course only on one side.”

  “I saw a rodeo star on That's Incredible who lost one leg,” Danny says, “and a couple of years later he lost the other one. His dream had always been to be six feet tall, and with two prosthetic legs, it was possible.”

  “I recently fitted a patient with two prosthetic legs,” Dave tells us, “and I made him two inches shorter than he had been to lower his center of gravity. I figured that it would make it easier for him to walk and balance. But the man was miserable because he has one of those huge sports utility vans and he couldn't reach the pedals. Instead of getting another car, he wanted his couple of inches back.”

  These issues are of course different for everyone, because of people's anatomical differences, the different ways they walk, the ways their skeletal frames are aligned, their weight and height. But our bodies are constantly changing in one way or another. Diabetics are particularly difficult because of their frequent changes. “I have to try to be aware to make my most crucial fittings on an anatomically average day rather than an anomalous one,” Dave says. “The easiest patient I can imagine would probably be Asian because he is usually short, lanky and active, say five-foot-six and at most 130 pounds. In America, we're giants and overweight and underexercised compared to this.

  “If someone has just had a motorcycle accident, lost a limb,” Dave says, “hey, those are the breaks. Those people are fun to work with. They get over it within a year and move on. But I see some people like a guy yesterday whose foot was crushed by a backhoe. When he first lost the front of his foot, he said he'd never go outside again. That's when the hospital called me in.” He laughs. “There, outside his room, his girlfriend told me that he said to her that she wasn't going to think him good-looking anymore. Now, that's pretty foolish. It's hard for me to have sympathy for patients with an attitude like that.”

  “Isn't that the same kind of conceit as the person who doesn't want to be seen by his wife without his false teeth?”

  “I don't understand that kind of thing very well,” Dave admits.

  “Our imperfections, slight as they are at times, can threaten our whole equilibrium,” I say, perhaps a bit pompously, but from a wealth of experience on the subject.

  “I do know that patients who have lost limbs face that,” Dave says. “People who have lost arms are generally more distraught than those who lose legs. Your legs get you there but your arms make things. My contact with people who have been wounded has made me realize that we are all disabled in some way. Most of us can't do everything we want to do. We have our limitations. The losses my patients suffer seem to have nothing to do with their happiness. Sure, it does for a time, maybe a year, maybe less, but their capacity for happiness and unhappiness is the same as anyone's. Except for pain. That changes life totally and I feel terrible when I see pain.” He pauses. “Sometimes I realize that I really need a sabbatical, a full year off. Today I worked on a diabetic who was losing body parts. He was on kidney dialysis. He'd already lost his left leg, his right hand, and now it looks like he's going to lose his right foot. He's forty years old and will only be with us for another year or so. I had to fight back the tears. All this reminds me how fragile we are and that this is all temporal, it has a limit.”

  We take a break. Georgia has made coffee and we sit in the large examining room, sipping it. The light is very bright. Even with my superdark sunglasses on, it's painful. Little by little, Dave and Dan begin working on some final adjustments, including the hydraulics of the knee joint. “We need to adjust the flexion and extension resistance,” Dave says to me. “You don't want the foot to swing up too high in the back or he'll have to wait for it to come back down again.”

  A pneumatic unit resists the acceleration until it hits the back of its swing. It engages and keeps the foot from swinging out too fast and too far, and decelerates rather than having it hit a stop. The extension unit does the same thing, making the foot slow down, preventing it from clunking. Danny tries to walk agai
n. “Look,” says Dave, “now he's goose-stepping. His left foot is still swinging way too fast.”

  As Tobias sniffs at a few different feet laid on the floor not far from him, Dave and Dan get into a discussion of the available feet. One is high maintenance and also makes noise. One needs special tools to take it apart, making it hard to fix at home should it begin to squeak. “That's its only drawback,” Dave says. “Otherwise it's lightweight and walks beautifully.” Some are more springy than others, some have bumpers. They discuss the rebound quality of the natural foot and claims of stored energy in artificial ones.

  Danny's current foot is called a flex-foot, designed as a high-performance athlete's foot, and it provides a significant amount of stored energy. “It's better if you still have your knee, the knee being important in controlling that motion,” Danny says. “These are a bit stiff for just walking and they don't handle rough terrain as well.”

  When you run with your normal foot, you spring off the toe, while flex-feet act as the leaf spring in a car does. As you land on it, it flexes, and as you come off it, it provides a little bit of lift. “The new foot I'm getting will be better for me,” Danny says. “I like spring on the heel, because that affects how I'm able to roll off the toe. Just as I'm coming off my foot, my good foot is ready to take the next step. With this new foot, the heel compresses really nicely when it strikes and there's enough stiffness in the toe. I don't run, and this gives me a nice smooth gait, which I like.”

  All the while, Tobias is considering chewing on one of Dave Loney's expensive feet. Dave notices and informs me that the feet cost as much as Tobias. This is not quite true, the price of the entire leg, all the visits and fittings, being about $15,000. All things considered, Tobias figures to be about $50,000.

  “Hey, Tobias,” Dave says, jumping up from his rolling chair, “I'll give you a couple of old feet to take home with you.” He kicks over a foot that for some reason is no longer functional. “Tobias, it's yours,” he says, and my dog puts a paw on top of it to begin his sniffing probes, eventually giving it a lick or two, then taking a quick snooze with his chin resting on it. We take the foot home, where Tobias stashes it among his other toys in a wicker basket in the kitchen and brings it out occasionally for me to throw.