A New Leg and the New Friends for the Professor
Which gives better results? Costly professional rehabilitation services in the United States? Or a small backwoods rehabilitation program run on a shoestring by disabled villagers? The answer depends on many factors, as the following example—which concerns my own brother—poignantly illustrates. It goes to show that money isn’t everything, at least for people who care.
On a dark, stormy evening in November, 1999, my sixty-seven-year old brother, Frederick G. Werner—better known as the Professor—suffered a tragic accident. As he left a church supper and began to cross the street on his crutches, he was run over by a passing car. One leg was mangled beyond repair, the other fractured in 20 places. At the hospital, his right leg was amputated slightly below the knee. The bone fragments in his left leg were set around metal rods inserted above and below the knee. Two months later a prosthesis was made for his stump and a full length plastic brace was fabricated to stabilize the other leg. A long, slow process of rehabilitation was begun to help him get back to walking. But for various reasons, things did not work out as planned. The whole process of providing a functional prosthesis and getting Frederick walking was fraught with an endless series of delays and frustrations.
The underlying problem was financial and bureaucratic. If he had been able to pay for private services, he would have been served more quickly and competently. But in the US, as increasingly elsewhere, health care is not a human right. You get what you can pay for. My brother is poor. Although he has a PhD in physics and was a university professor decades ago, he has long been unemployed, partly because of his hereditary disability (the same progressive muscular atrophy that I have but which has affected him more). Unfortunately, Frederick received no money from the driver’s insurance company. Witnesses say he stepped from between two parked cars directly into the path of the vehicle, so the driver could not react. The investigating policeman did not hold the driver responsible, so the insurance company did not cover medical costs.
Fortunately, being over 65, my brother was entitled to Medicare. And shortly after the accident, I and other relatives bought him a supplementary insurance plan. But unfortunately, the bureaucracy and delays in getting the services he needed led to to poor results. The prosthesis was essentially well-made but needed minor adjustments. But according to the regulations, the prosthetist was not permitted to make any adjustments until he got authorization from the case physician who was based at the hospital in Maine (and frequently, it seemed, on extended vacation). The physician, in turn, could not approve the adjustments without prior approval for Medicare.
This runaround and red tape caused delays of two months or more for adjustments that should have been completed the day the need arose, so my brother developed ulcerations and failed to progress. Because he was not progressing, the decision was made to discontinue his rehabilitation—Medicare, he was told, only covers rehabilitation for those who are showing improvement. A whole year went by and my brother was still unable to use his prosthesis well or to manage his self-care adequately. Complicating the picture was the pre-existing disability that caused weakness and severe contractures in his hands. In addition, he had a chronic prostate problem for which surgery had been delayed until he was up and walking on his prosthesis. In the meantime he used an indwelling catheter. It was always getting plugged up and had to be constantly flushed or changed. This made it very difficult for him to meet his basic needs. He was then living in a small trailer in the woods with winter coming on. To make things worse, in November, a year after his accident, the town’s sanitation officer condemned his trailer and ordered him to vacate it at once. He had no money and no place to go.
When I learned about this (I was in California at the time) I offered to arrange for my brother to go to PROJIMO, the small community-based rehabilitation program run by disabled villagers in rural Mexico. I had suggested this before, but my brother had always refused. He could not believe that poor disabled Mexican villagers could possibly help resolve his needs. But his alternatives had run out. A nursing aide from the hospital in Maine voluntarily accompanied him to Mexico.
For the PROJIMO team, my brother’s rehabilitation proved a big challenge. Within the first days, Marcelo Acevedo, the village prosthetic technician, took a mold of “Federico’s” stump and began to make a new prosthesis. Marcelo, whose legs are paralyzed from polio, has incredible skill matched only by his patience and good nature. Making a workable prosthesis for my brother was more difficult because of my brother’s preexisting disability. Also, whenever Marcelo or anyone else wanted to work with Federico he was always “occupied” with his urinary or bowel problems and other personal difficulties, which filled most of his waking hours. Nevertheless, with admirable patience, Marcelo persevered. By trying four different sockets and with dozens of adjustments, he managed to create a functional, comfortable prosthesis which my brother can easily attach and unattach himself, despite his disabled hands.
The team also helped my brother integrate into the community. He was tutored in Spanish by Julio Pena, a quadriplegic young man who runs PROJIMO’s intensive Spanish language training program for visitors from other countries (see the announcement). Julio devoted a lot of time, energy, and patience to this task. But “El Professor” would say jokingly that, like Reagan, he had “a Teflon mind: nothing sticks to it.” Nevertheless, Federico learned some daily basics of Spanish.
As it turned out, while he was at PROJIMO Federico helped to engender closer interaction between the rehabilitation program and the local community. The rehabilitation program recently moved from a more remote village (Ajoya) to the larger and more accessible village of Coyotitan, so it still does not have as close a bond with the community as it had in Ajoya. However, Federico helped build closer ties to the community by teaching English to a group of village children. In the early days of his teaching as many as 20 children would come eagerly to his classes. Federico would throw himself into his teaching with such energy and enthusiasm that the children would cling to each other in wide-eyed amazement. Sometimes my brother would become so carried away by telling wild stories in English, he would forget that none of the children could understand him. Julio, who has learned something of the art of teaching a second language from Sarah Werner, a cousin of ours from Cincinnati, did his best to share with el Profesor what he had learned.
My brother, who stayed at PROJIMO from December until June, has now returned to New Hampshire. On looking back at his experience in Mexico, in spite of the rustic conditions and sweltering weather, he speaks of PROJIMO as a “paradise” and of the disabled workers as “angels.” Above all, he praises Marcelo for having designed and built for him a prosthesis that works much better for him than the state-of-the-art limb made by a specialist in the United States. And it all cost only about 1/20th of what that specialist would have charged.
Marcelo was willing to work with me as a partner and equal in the problem solving process.
The Professor has come to realize that the biggest difference in quality of services is not so much a question of money or skills. It is a question of people to who genuinely care, and who are there willingly and cheerfully when they are needed. Without the sea of red tape.
For me it was no surprise that Marcelo Acevado, the disabled village rehabilitation worker in Mexico, succeeded in making a well-fitting prosthesis for my brother when a highly-skilled prosthetist in the United States had been unable to accomplish this in nearly a year’s time. For me it was deja vu. Over ten years before, Marcelo had created highly functional plastic orthopedic leg braces for me which work better than the appliances made by specialists in the United States when I was a child. Marcelo succeeded when they had not because, rather than simply prescribing what he thought I needed, he was willing to work with me as a partner and equal in the problem solving process. The story of my childhood frustrations with specialists who would not listen to me, and the way Marcelo got better results by working closely with me, is told in the chapter called “Braces for David” in the book Nothing About Us Without Us, available through HealthWrights (please see the flyer on our publications).