BMJ 2002;325:1181 ( 16 November )

Reviews

Personal views

Young patients

"Those young patients are in a mess." That's what nurses and doctors often tell me. "Those" are the many young people coming for physiotherapy in our rehabilitation centre. Many are imprudent youngsters with traumatic brain injury after motorcycle crashes, and some have neurodegenerative diseases. All have severe motor limitations, but they all have great expectations for their future. Often I try to act as soft interface between the paramedics and them, to try to avoid the arguments that frequently arise.


(Credit: TONY DEJAK/AP PHOTO)

It is possible to live a life that is different from most people's

Dealing with young patients is a peculiar experience. They require not just constant attention and sympathy, but also understanding of their needs and thoughts. Trying to understand them is exactly what bothers some of my colleagues who see themselves as too busy doing sophisticated research or making money to waste time chatting with a teenager in a wheelchair.

Younger patients in rehabilitation are different from elderly patients. Elderly patients need smiles and reassuring words. They just ask for a quiet time and for the easiest way to cope with their disease. They let the therapists do their job. The young ones don't complain, nor do they want us to commiserate with them. They ask for attention and yet argue every prescription. They often want to know the "why?" and "how?" of the treatments they are being given and ask about their real, practical usefulness.

This attitude leads inevitably to a deeper and more sincere dialogue on the meaning of life in a wheelchair and of how it is possible to live a life so different from most people's. It is like working with a class of students who have to learn a difficult lesson through constant hard work and frequent tests. Some are good, attentive, and respectful; others are angry rebels. Doctors have to be good teachers and carry them all to the end of their school year.

With these young patients, the usual prescriptions and attitudes often seem inappropriate and sometimes even cruel. "Don't smoke" may be right for a patient with vascular disease, but smoking, even a little marijuana, may be therapeutic for a young, smart girl in a wheelchair who cries daily for her "fiancé," who has run off after hearing her diagnosis. To preach chastity is also nonsense to a sports champion with a rapidly devastating disease, which will kill him more rapidly than any sexually transmitted disease.

Physiotherapy is often seen as a boring sequence of movements. Doctors and therapists therefore have to invent exercises and games to entertain these patients and stop them from getting frustrated. Races on wheelchairs are fun. Dancing is the most special form of exercise---in wheelchairs the two young people touch each other's hands, and they say that it's really romantic.

Dreams are the same for any youngster across the world. In a rehabilitation centre they have to make them come true while doing therapy or learning self catheterisation. Like any boy or girl, these young patients like to flirt, full of shy smiles and giggles.

Sometimes the flirting leads to love. The doctor then has to turn a blind eye and sometimes take the side of the two lovers against their families, who are often too worried about the lovers' health to consider their happiness. Sexuality in these people is not considered an option---it is even considered a dirty thing.

A couple of times I have even been asked to be the best man, to help arrange a wedding ceremony in a church or buy a king size bed with special supports. Unfortunately I also attend the funerals of those who have had too few years of happiness and who had made crazy projects for the future.

Young patients remind us that we have a soul.

Claudio Crisci, Salvatore Maugeri Foundation

Rehabilitation Center of Telese Terme, Italy


© BMJ 2002

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