A South African man who was misdiagnosed with meningitis at the age of twelve spent over a decade of his life unable to communicate with those around him. As a young boy, Martin Pistorious’ condition grew so dire that doctors told his parents that there was no hope for his life. He was not expected to live long as a result of what doctors wrongly believed was Cryptococci Meningitis.
Taking the advice of the boy’s physicians, Martin’s parents brought him home and kept him comfortable, thinking their son would die soon after leaving the hospital. To their shock, he continued to live. Years passed, and although Martin did not noticeably emerge from his unresponsive state, he did not die.
Defying doctors’ prognosis by living, the boy suffered from a second misdiagnosis – that he was a “vegetable,” or in a permanent “vegetative state.” This demeaning term has been used to describe human beings who are thought to have no brain function. Consequently, they are treated as shells of people rather than respected and valued as all humans – regardless of their awareness – should be.
Even Martin’s mother believed her son was beyond recovery. NPR reports:
Joan vividly remembers looking at Martin one day and saying: “‘I hope you die.' I know that's a horrible thing to say,” she says now. “I just wanted some sort of relief.”
Martin heard his mother say this to him, and fell into a deep depression. “As time passed, I gradually learned to understand my mother's desperation. Every time she looked at me, she could see only a cruel parody of the once-healthy child she had loved so much,” he said. Martin became convinced that he would never experience love or tenderness again, because no one could see that he was aware of his surroundings:
The stark reality hit me that I was going to spend the rest of my life like that — totally alone.
Despite his fear and depression, Martin gradually recovered over the course of several years. First he began to engage his own thoughts, and then he began slowly to regain control of his own body.
The medical community can be incorrect when doctors assert that patients are unable to perceive their surroundings or use at least some of their senses. This was tragically the case with Martin Pistorious. Thankfully, Pistorious lived to tell of his experience in his book, Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body.
When considering how we care for people with severe disabilities, stories like Martin’s should help us in defining our priorities.