CMT Awareness Month 2017
Another year, another chapter, another post about Charcot Marie Tooth Disease. I suppose it makes sense that CMT manages to stay impactful in families, yet virtually unknown to the public. CMT is like that. A story inside, rewriting chapters, mostly invisible. Yet tremendously powerful for those who live with it.
Lately, I've overheard my kids explaining CMT to their friends. "My mom has this disease so she has to park closer to the store. It's a foot problem."
So I have found the simple ways to communicate to the age-old question. What is CMT?
First of all, Charcot Marie Tooth has nothing to do with teeth. It's named after the doctors who first discovered the disease. It's genetic (except I seem to be the first of my family). It's a nerve problem, not just a foot problem. It makes nerves not work as well. So the muscles attached to those nerves think, "Oh, awesome, no one needs us anymore," and they get weaker. Then the tendons tighten up. Other muscles step up to help the weaker ones, except they aren't supposed to work so hard. They get sore and tired quickly. Weaker muscles also struggle to support joints, so joints may slip more easily, causing sprains.
CMT is a foot problem. But it's also a balance problem and a weakness problem and a tiredness problem. The fatigue is real.
The body is an amazing miracle where everything depends on everything else. It's like a game with a glitch, a computer with a kooky line of code, a house with erratic wiring.
And, in many ways, the CMT body is an even-more-amazing miracle. Because even with the glitch and the damaged coding and erratic wiring, life carries on. And things that should be massive challenges became part of everyday life. We carry on.
The next part of the story freaks out all of the kids, especially my kids. "Well, what happens next? How do doctors fix you?"
The answer freaks them out
Doctors can't fix me. CMT does not have a cure.
Yet.
I rest when possible. I visit my neurologist and podiatrist regularly. I eat healthy and exercise (being careful not to overdo it). I make my life work for me.
The kids may have questions, and I'm happy to answer them. CMT is treated with braces, surgery, lifestyle changes, and (possibly) medications to take the edge of off pain and fatigue. CMT demands creativity, strength, and resourcefulness. People with CMT are some of the bravest people that I know. The CMTA and the Hereditary Neuropathy Association are great at sharing all the complexities of CMT. Such as that CMT patients are helped by the Muscular Dystrophy Association, but instead of causing muscles to atrophy directly, CMT affects the nerves which in turn affects the muscles.
Living with CMT has so many challenges. Many, many, many challenges. Our nerves, the wiring inside us, is important in so many ways.
Yet, within the challenges, I find opportunities to appreciate the skills that remain. I find immense respect for Here and Now. I empathize with people who face challenges of their own through no fault of their own. I learn patience everyday with myself, and in turn with others. I question established assumptions about Disability. In these times, people with differences may be made to feel "less than" or unable to contribute enough to justify their healthcare or value to society. I question disability representation in media and film. I learn creative ways to solve old problems, bringing that creativity to new places, such as my technique for making Forest Fairies* with kids that avoids needles and fine motor skills. I connect with a community of people likewise affected by CMT.
CMT may be rewriting the story of my physical skills, but I write the story of my life. I choose how those changes are written into my story.
We can change the world. One storyteller at a time.
*the link to Forest Fairy Crafts is an affiliate link. Should you choose to purchase the book, a small amount supports my family while your price remains the same. Thank you.
