When we began this project, we expected that most of the lessons to be learned would be related to the earlier stages of living with a brain injury: rehabilitation, returning home, reentering the community, going back to school or work, and learning to cope with the cognitive, physical, communication, emotional, behavioral, and social impairments caused by a brain injury.
We were saddened to discover that many longtime survivors are still struggling mightily. Far too many feel isolated from the rest of the world. Their social contacts are limited to the people who attend their support group meetings. Their lives are far from meaningful, productive, and happy. They feel abandoned by the medical community that saved their lives. “Now what?” they ask. “How are we supposed to live with a brain injury?”
These unsuccessful survivors could benefit from the wide variety of helpful resources available in bookstores, on the Internet, and from the brain injury associations. But, for a number of reasons, they don't. Some are unaware of the wealth of material available. Others have difficulty reading. Many are overwhelmed by the superabundance of information and misinformation on the Internet.
Some folks living with a brain injury are exhausted by the challenges of daily living. Their confidence is shattered. Their motivation is gone. They are too depressed and/or anxious to act on their own behalf. Far too many survivors believe that any further improvement in their condition is unlikely. They have given up.
The most unfortunate people living with a brain injury are those in a persistent vegetative state or so severely disabled that they don’t recognize their impairments and are unable to set goals for themselves. By one measure, 15% of survivors fall into these two categories.
For the remaining 85% of people living with a brain injury, their goals might be to
We believe that most survivors can, with some effort, achieve a more successful recovery. But what is a successful recovery from a brain injury?