Earlier this year, CMTA asked for people to organize walks all around the country for CMT awareness. “It would be so great to get Julianna out for something like this,” I thought. I knew she’d love it, but it was the same old story: stupid CMT. It was hard to even leave her room.
After she died, I contacted CMTA. “We want to walk,” I told them. We didn’t have the energy to organize it, but if someone stepped up, we would be there. We’d bring Awkward Unicorn (a Julianna surrogate?) and walk – for her, and because of her.
And it happened. Yesterday, in a park with soaring trees, we gathered for Portland’s first ever CMTA walk.
The weather last week was quintessential gray and rainy Pacific Northwest — but yesterday we got a break.
I said a few things, and learned many more:
Believe it or not, this was the first time we came together — in person — with the CMT community. We’ve known for years that Julianna had CMT, but didn’t think to reach out. Yes, we were very busy keeping Julianna alive, but it was more than that.
Our CMT is like a freak of nature. In two generations, it went from almost nothing (Steve) to deadly (Julianna). What does that? (We will have an answer soon – I know it). So even though we had a diagnosis, I didn’t feel that we fit in with the CMT community.
Yesterday, I met and learned of others with CMT who also don’t feel like they fit in. There are over eighty different types of CMT, and there is a wide range of severity even within the same type. Many are the first in their family to be diagnosed. So…none of us “fit in.” We are all awkward unicorns.
CMT is a frustrating disease. It’s hard to explain, hard to predict, hard to diagnose — and I say this as a neurologist and a mother who has suffered the ultimate loss because of this awful disease. I have wanted to throw my hands up in the air many, many times. Except that it killed our daughter — so I can’t. I won’t.
My plea (to the world, but especially to the CMT community) is this: We are each other’s best hope. If we come together, we can beat this thing. If we don’t act, who will?
Whatever you can do — walk, talk, write, give, get people to give, educate, be educated, dye your hair blue — do it. Even if it feels awkward.
Huge thanks to Ori and Debbie (and family) for all the work you did to make this walk possible.