Out of Calamity
Preface
What do you do when someone you love leaves home for work or a night out and that person you knew never returns? They’re still very much alive but the man or woman who comes back through your door maybe months later, is not the same and they need your care, attention and maybe years of rehabilitation. This is what happens to thousands of Australian families every year. It’s hidden and rarely talked about but it’s common and devastating: a calamity.
And it could affect you or me in our lifetimes. In fact it already has affected me but more of that later.
When you say the phrase ‘brain injury’ to someone, they think of car crashes, motorcycle accidents or a big knock to the head in sport. It’s much more than that. Strokes are brain injuries, diseases like multiple sclerosis cause brain injuries and meningitis can produce a brain injury. Any insult to the brain can damage your ability to think, remember, see, speak, walk and feel, as well as who you are personality-wise.
While the impact on the person experiencing a brain injury can’t be minimised, it’s those around them who must never be forgotten. They see what the injured person sometimes lacks the insight to see. Carers have to motivate, prod, cajole and protect and in so doing often neglect themselves.
The good news is that work by Roger Rees and others around the world has shown that our brains have a much greater capacity to heal than anyone ever imagined. But it’s a long time scale measured in years rather than weeks to re- form nerve connections where they never existed before in order to bypass damaged areas.
In the bad old days they used to say (and some still do for people with stroke) that after a few months rehabilitation, you’re going to get virtually all the gains you ever will. A lot of research has found that’s simply not true. You can’t expect that neural networks which took a childhood and adolescence to be built, can be re-built in six months. Our brains never developed like that even when they weren’t damaged. The difference when the brain is damaged is that rehabilitation has to find ways to create intense learning pressure on the healing brain so it forges new pathways.
My story is that 25 years ago, my father fell and hit his head, required emergency neurosurgery to remove a clot and was in a coma for a week. This was in Scotland and I rushed back thinking he may die. He didn’t but all the effort in the health care system was on the acute life saving side, not the aftermath and obtaining rehabilitation for him was a nightmare. I even resorted to exposing the appalling state of Scottish rehabilitation services in the media there.
A man who was a teacher and a musician, never worked again. He was left with double vision and a personality change which made a gentle man, even more gentle. His intellectual powers were undiminished but 25 years later, in his late 80s, he is still confined to a wheelchair, tended to by my mother at home. They have a hoist to get him out of bed in the morning and back into bed in the evening and he requires community services for what to you or me would be the smallest of things.
It became my mother’s life – a life which I’m sure would have been easier had he been able to have state of the art rehabilitation.
The stories in this book are a testament to love, perseverance, creativity and downright doggedness.
They’re worth reading because there but for the grace of god, go you or me.
Dr Norman Swan
Host The Health Report
ABC Radio National