Today, my TEDMED talk, viewable on both TEDMED’s and TED’s websites, reached one million views. I am stunned. How can this be?
My questioning is not rooted in false humility. I am not questioning that what I said is interesting to a million or so people. After all, I spoke about the millions of people who suffer health problems on this planet. I spoke from my heart. I spoke with the support of my tribe, and hence had the chance to tell some truth.
I am surprised, nevertheless. I am a warrior in the health space because of a rare disease that affects my two children. It is rare. Very rare. No healthcare provider ever knows anything about it. The 4,160 people affected by PXE we have found worldwide all face bewilderment when they sit in front of their doctor or nurse. “You have what? I have never heard of it.” And so people with PXE, and any one of the 7000 rare diseases, live in a world where we feel very alone. We celebrate giving a talk to 10 doctors, or a grand rounds for 100 clinicians. We are excited when a handful of people are interested. One million people? No way.
This interest is a testimony to the heart of people, as we all seek to come into meaningful community. I have received many messages thanking me. Some have thanked me for describing the fight to get researchers to share data, and institutions to find ways to incentivize that. Some have rallied behind the idea of the individual as the expert – about their disease, their health, their lives.
Pat and I consistently and persistently showed up and faced the opportunities and challenges with the support of the other. Our children, Elizabeth and Ian, blessed our work as we expanded it to include all diseases in Genetic Alliance and many other organizations to which we gave our skills and resources. They worked to make PXE International better, and still do today. They have roped in their wives Erin and Michelle to do the same.
As I say in the talk, we turned toward our fear of the unknown with curiosity. It is only in opening to that fear - opening wide -that we could see some options. This awareness led to choices, a lot of them. We learned to trust our instincts and to march forward. Along the way there were many people who share the wealth of this talk hitting 1 million views. Too numerous to name, they include Lionel Bercovitch, Martha Rich, Cathy Dunning, Bob Dunning, Marnie Bolstad, Tom Hanold, Chris Vocke, Diane Baker, Francis Collins, Kathleen Deignan, Jessica Harper, Tom Rothman, Sam Harper, Kemp and Kerissa Battle, Shantanu Gaur, Chris Price, Nancy Pereau, Al and Jo Ditheridge, the PXE International and GeneticAlliance Staff and boards. Gratitude for Pat: what a journey, impossible without each other. Onward!