Synapse - reconnecting lives

Survivors of a brain injury often make excellent recoveries through a positive attitude, hard work and family support. But once the rehabilitation is over there is often a sudden slump, leaving the survivor with depression, despair and suicidal thoughts.

The crash came three years later. I'd always been a really positive person and I threw myself into rehab. The doctors were amazed at how well I did. Even after two years I kept working on new strategies, although my brain had ceased to improve at that point. Then suddenly I came to a point where I couldn't bother any more.

I tried to kill myself last year, and my family got me to counselling. I don't think it's helped-there's just no point really if I can't work or have friends. During my rehabilitation I was pretty positive about the future but there's nothing now. This is it. No more improvement.

I know I should be happy, and I was for a long time. I'm one of the lucky ones. A mild brain injury, a big recovery and I'm even back at work, my family is supportive and most of my friends still hang around. But I've lost big parts of me forever: my memory, energy to do things, and my sense of taste and smell. A year after discharge the loss hit me and I've lost the plot since then.

Why?

The major reason for the post-rehab slump is psychological. The individual with the brain injury is told that a positive commitment to rehabilitation will maximise results. This is a clear goal, and more importantly it is usually easy to see the progress resulting from hard work.

The brain does its best to heal itself to a limited extent for a year or two after the injury, which contributes to a sense of progress. Even beyond this point, improvement can still be made by working on the strategies that will compensate for the cognitive deficits-memory prompts, anger management, pacing themselves and relaxation techniques.

But inevitably there comes a point where visible progress tapers off, and it is apparent that this is as good as it gets. The survivor has been focusing so much of their time and energy on this goal of recovery, and now it has been reached. The logical step is to set a new goal, and this is the point where the limitations of the injury are so apparent.

Where to from here?

No matter what the new goal is, it will be limited by the effects of the brain injury. Employment may not be possible, or only on a drastically reduced level. Any big project will be difficult due to the impaired ability to plan, concentrate and remember. Goals involving social activities will be hampered by reduced self-confidence, social skills and energy levels.

Who is this stranger?

Particularly for those who have done well in their rehabilitation, this new self can be very difficult to accept. Despite being told things will never be the same again, there is the secret hope that possibly enough hard work during rehabilitation may still make good things happen. So being confronted by the reality of this new self can be a crushing disappointment after many months of measurable progress. Some describe the new self as a stranger living in their skin, and knowing that this will not change can be hard to accept. The brain injury itself can add to the impact of this disappointment as anger, depression and intolerance of stress are often much harder to handle post-injury.

Accepting the New Self

Particularly for those who have done well in their recovery, this new self can be very difficult to accept. In a way this is the final stage of rehabilitation and often the hardest. Coming to grips with this new identity and even learning to appreciate it is a very difficult step, and many people are unable to make it.

For some, the answer is focusing on a positive attitude. Cognitive deficits are viewed in a different way to see the strengths that can arise. An inability to work means opportunities to develop hobbies such as art or gardening. Lack of energy means taking more time to 'smell the roses'. Wrestling with depression gives an insight into the pain and suffering of others.

Other survivors have made sense of their experience by seeing how they can help others. They may attend or even initiate a support group where they can share their hard-won lessons with others, or write of their experiences. For those who can work, an option is casual work supporting others with a brain injury.

For others, a spiritual approach or commitment to self-improvement may be the key. Each cognitive deficit is seen as an opportunity for self-growth and further development, not just as a disability. Remarkably, people often find that even many years post-injury, they still find themselves gradually improving in some areas with this approach. Some even come to appreciate how a brain injury has made them a more thoughtful, stronger person because of the many challenges they have faced and worked through.

What Can the Family Do?

Families can help their loved one by putting strategies in place to avoid or lessen the post-rehabilitation slump. Work with them on developing new goals and activities before rehabilitation tapers off. Contact your State Brain Injury Association for support groups and activities that may exist in your area. A counsellor can also help the survivor with their new identity. As one survivor put it, "For survival we must let go of what was, in order to become what we will be".