"If we are open to breathing into our fear and being vulnerable with those systems and people who challenge us, our power as changemakers grows exponentially.

When we all accept that working on our inner life is working on our outer life AND outer work is inner work, we get down to what is real and shit gets done. There is no limit to what we can accomplish together."

1 Million Views for my TED Talk - I am Amazed!

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.

July 31, 2017 - I have long outgrown the skewed view of the universe...

Today is the 31st anniversary of my husband and my marriage. It is remarkable to me to think of that day, so hot and humid, 31 years ago and where we are now.

Sometimes people ask us if we feel badly that our union literally resulted in our kids having a disease - because their disease is autosomal recessive, we are 'responsible' for it. In an autosomal disease, each parent passes on a gene with a mutation, and not the gene without the mutation (we each have one of each). So yes, Pat and I each passed on an ABCC6 gene with a mutation in it. Two mutations, and no 'normal' copy of the gene, gives our children pseudoxanthoma elasticum (PXE). Not only did we do this once, we did it twice. 100% of our kids have PXE.

I am do not feel good or happy that we passed these genes on. And, I also don't feel badly about it either. These seemingly contradictory feelings are allowed - in fact, what is often called confusing feelings, are multiple different feelings.

There was a terrible moment (that lasted weeks) in which I couldn't comprehend the world having this glitch or bump in it. I kept thinking that we would be able to reverse time and not have to accept this piece as our reality. That never happened - time marches on - and here we are in 2017.

Journey to TedMed

Preparing for this TEDMED talk gave me a wonderful occasion to pause and reflect. With the release of the talk I have the space to give more color to experiences and ideas I shared there.

When my husband Pat and I were faced with the pseudoxanthoma elasticum (PXE) diagnosis of our children, we were shocked. The linear, idyllic, progression of life that we expected was derailed. Instead, a surreal unfolding ensued. Day by day we realized that we couldn't go backwards to BEFORE. We also realized that we would have to go ahead into a space we never knew existed. This foray into biomedical research was beyond groping in the dark for a light switch to illuminate our world; it was like having to find the source of electricity to power us through.

Pat and I had no reference points, no landmarks, no understanding of genes, multi-systemic disease, or the fact that many conditions simply do not have treatments. We were attempting to plot solutions using tools we had never seen nor heard of before. As Pat said, "We didn't know a gene from a hubcap".

Because we were neophytes, we had beginner's mind and heart. For us, there was immense space around each of the problems we encountered and many opportunities for considering novel solutions.