A Long Season in Hell

If you have read The Diving Bell and the Butterfly by Jean Dominique Bauby, you will know what amazing things a human being is capable of, even when almost totally paralysed. Bauby was Editor-in-chief of the French magazine, Elle, when he suffered a massive stroke. The only voluntary movements he retained were a slight turn of the head and a blink of his left eye. He was lucky that a colleague noticed his purposeful blinking and devised a code by which he could communicate. So, dictating with blinks of his eye, composing, revising and remembering sentences in his head, he wrote his imaginative, rich and moving book.

It seems that Bauby was lucky, too, that there were facilities in France where he was treated well. After my review of his book was published, Dr Gail Graham wrote to me: Did I know, she asked, that there were no facilities in Australia like the one in France where Bauby was treated? Did I know that in Australia Bauby would most likely have been classified as being in a persistent vegetative state and given no rehabilitation treatment at all.

I did not know these things, and I was not sure that I wanted to know them. But I decided to read Gail Graham's book anyway. It was harrowing, shocking and compulsive reading, because any one of us might be in Gail's situation.

In 1983, Gail's son, Jim, suffered severe head injuries in a car crash in Queensland. Gail and her husband, Rollyn, were told that he was unconscious, in a coma, and dying. They were advised not to travel from their home in Victoria to see him, because he would be dead before they arrived. But he did not die. So they brought him home to Victoria where, although he appeared to them to be awake, and even responsive, most doctors believed there was no chance of rehabilitation and that he should receive no therapy.

Gail is sure that a determining factor in this decision was that, in Jim's case, there was no possibility of a compensation claim and hence no money to pay for treatment and rehabilitation. The patient was, she says, unprofitable".

Gail Graham disagreed with the diagnosis and has fought the system ever since in order to provide her son with therapy and a better quality of life. But she tells a story of struggle against almost unbelievable opposition. Of doctors, therapists, lawyers and politicians who closed ranks, got cold feet, or seemed to be plainly incompetent.

Every success for Gail was clawed from an unyielding system which she fears may still take it back at any moment. And the cost to her, in terms of her own life and that of other members of her family has been more than most people could bear.

In a system where there is a limited amount of money and where politicians constantly juggle the need to gain votes and stay in power against the needs of the community, hard decisions have to be made. As Gail Graham's book shows, individuals will suffer. We all know this and accept it in a general way, but few of us have to experience the most extreme consequences directly, as Jim and his family have.

What is shocking, is that so often the book tells of Gail and Rollyn fighting petty bureaucracy and power-mongering in order to do things which were of no cost to anyone but themselves. Simple things, like paying privately for therapists to treat Jim.

Gail Graham writes well, and this book is gripping, if shocking, reading. But we should all take note of her experiences, for they show how powerless an individual can seem to be when faced with an entrenched and imperfect system, but how those who are determined enough and persistent enough can sometimes win through.

Gail's book ends with a message written by Jim. It is barely legible, but it is an achievement which many thought impossible. It reads: "I still could get better Please help me. Jim".