It’s amazing what two nights of very little sleep, followed by a bit of travel did to me. Was it all worthwhile? Maybe that’s the wrong question to ask. But travel, adventure, meeting other people, listening to stories, making new connections has to be good.
An ‘event’ I will remember is the short ‘concert‘ Stephan Völker gave. His brother Klaus suffered a brain injury and after their parents couldn’t continue to look after his brother he did. He told us about their story and it was deep, moving and, hard to believe, funny.
One of the very interesting people I met was a man whose son had suffered a severe brain injury. They live in the North of Germany. And guess what? He’s planning to set up a rehab centre using robotic equipment. We decided to stay in touch and exchange reports on progress. Another one was a woman whose son had suffered an injury when he was 6, 20 years ago. Every word she said was precious and wise. It really highlighted the need of people coming together to share their experiences and to learn from each other. One of the many points she made was that fighting the system is just really tiring and creating so much negative energy. Much better to focus on what can be done, focus on how to progress things and then, if needs be, take decisive action to remind everybody of their obligations. One of the many details she shared was that her son spent 5 years getting about 5 hours of therapy a day over 4 weeks, followed by a one week break. When I heard that it nearly made me cry.
The one-and-a-half-day congress also reminded me that everything has to start with the needs of the survivors and their families. Talking about legislation, about care plans, about path ways, about equipment and therapies only makes sense if the starting point is the help that the survivors and their families require. Everything else is abstract and self-centred. The problem is that this is, in very many cases, not being done.
One thing I also realised when listening and talking to people at the congress is that when they talked about severe acquired brain injuries, they were not talking about survivors like Pádraig. They were talking about people with a significant level and ability of independence.
Pádraig today used his voice to a point where we thought he was using it repeatedly on purpose. We spent some time trying to find and then to use apps for brain rehab and training. Haven’t really found something great and convincing yet but keep looking. He’ll also have to get out of the house soon. It’s nice looking out at the snow, but not forever.
We’ll have to plan our next trip. Together.