When the word Duchenne enters our home, we are often stuck in the mud of negativity. It feels like the diagnosis removes all of the hopes and dreams we had attached to our son’s life. We search the internet, speak with doctors and researchers, connect with other families, and find that the predictions and statistics of Duchenne are the only lyrics on the iPod of our brain. For some families, life feels like it is over, that the rest of this journey will be filled with tears.
Through social networking, we are now more connected than ever. It is not unusual to see a ‘friend request’ in your inbox from an adult with Duchenne. In the US, we have more than 400 adults over the age of 30. Really? 40-something with Duchenne? You’re still here?
It is time for the community to stop advertising: Duchenne, the genetic killer of children, as it is not true and hurtful to the adults with Duchenne living their lives and contributing to society.
Jos Hendriksen, PhD a neuropsychologist from the Netherlands has spent considerable time interviewing adults with Duchenne and learning from them. Jos and colleagues recently completed a documentary on ‘Success Factors’ – looking at life through the lens of an adult with Duchenne. 3D – Duchenne in the Third Decade.
Last weekend in Amsterdam, Jos premiered the documentary to a small group of experts. The film starts with a quotation from Paul Watzlawick, PhD. Dr. Watzlawick was a psychologist and philosopher and one of the most influential figures at the Mental Research Institute in Palo Alto, California. Dr. Watzlawick said: “The belief that one’s own view of reality is the only reality is the most dangerous of all delusions.” We cannot judge the value of another life through our eyes. Only the individual living their life has the ability and insight to discuss their quality of their life.
Jos interviewed adults with Duchenne in Belgium, Denmark, Amsterdam, and the US, and each of these men were asked to rank their quality from 0-10 (10 being excellent/perfect) and without exception, life was good – 8.5 to 10. These men talked about hopes, dreams, relationships, friends, education, and employment. They talked about frustrations – policies that prevent gainful employment, the difficulties of coordinating care, referring to themselves as the “unforeseen generation” – whoops you are still here?! And they talked about doctors unprepared to care for adults with Duchenne.
These men described few barriers to their successful lives. In fact, they shared that because of the diagnosis, they had a greater appreciation of time, of family and friends, of the meaning of love. One young man said, “You cannot make people happier than they want to be, and I want to be happy, I have only one life.” Another said, “I can do anything, I just do it sitting down.”
If you are attending the 2011 Connect Conference in Baltimore in July – and we hope that you are! – you will have the opportunity to watch this extraordinary film. The film gives voice to a previously quieted generation and it teaches us parents a thing or two about the value of optimism.