What a week. Highs and lows. I started so strong with reaching out to our community. The conversations with my new friends gave me such inspiration. I had big plans for follow-up posts. Then, reality. It was a busy weekend. I did push pretty hard. And got sick. Really sick. I'm finally getting relief after a couple of days with antibiotics. One day I was fine, the next slammed-down with bronchitis and sinus infection. I feel so fragile sometimes. Frustrating. The sort-of nice thing about it was I shelved everything for a few days. I even took a day off from teaching. Really slowed down.
Of course, as I feel better, the postponement only feels bigger. More to get to now than ever. All in good time.
The big message that sank in this week for me was how we write the CMT story. I forget what is out there as facts for the public. And I found CMT described as a hands and feet challenge. That it affects mobility, dexterity, and may lead to wheelchair-use.
And that sounds small. How can I say that?
Because CMT is so much more than feet and hands. I'm not scared of wheelchairs anymore. What scares me with CMT is bigger than mobility.
CMT is a whole-body experience. Fatigue, emotional stability, general health are all affected by this condition. The nerves may fray more quickly (fray is my word- in reality the insulation starts breaking down) around the hands and feet, but it affects nerves everywhere. Affects more than nerves. It affects muscles, joints, tendons, circulation.
Now, I don't want to be alarming. I would just love if we could get the mainstream attention, the media blast that would propel research forward even faster.
I am a disability advocate. And being that, I would not change my abilities. Really. I am fine with my life. But the pain. The cost for my family as I need more and more time for recovery. The uncertain future. Those are the big problems with CMT. This is no small, rare disease. This is real, powerful, and important. I send my message to the universal energies. Notice us. Let us change the story.
Thanks for the well-wishes this week! All strength to my community :)
At school we raised caterpillars. Last week we did a big release of the butterflies. Anika was lucky enough to have one stretch its wings on her hands. So much work, that transformation. Such magic!