September is Charcot-Marie-Tooth Awareness Month. And this month — this year — I’ve never been more aware of CMT.
I was diagnosed when I was 19, after a series of falls and half a semester of college note-taking during which I suddenly couldn’t hold a pen. I couldn’t tie my shoes. I struggled with buttons. Two electromyograms, a DNA study and a spinal tap later, I was told I have an unknown variant of CMT — something that presents like CMT but doesn’t have an official series of letters and numbers to identify it.
This is how we explained my early wrist drop and finger contraction — something that usually happens much later in CMT’s progression. It’s how we explained the atrophy of one of my pupils — another quirk that took a summer of tests to work out. It’s why, when my hands and feet went completely numb six or seven years ago, I believed my mystery CMT was to blame.
That time, it wasn’t — though I do, like a lot of people with CMT, experience intermittent periods of prolonged numbness in a finger or an ear or a calf. That time, it turned out I had a severe B12 deficiency — something my doctors at the time kept missing, and something finally treated (successfully, I’m happy to say) by the neurologist at my local MDA Care Center in Omaha, Neb.
For most of my life — even before I knew I had it — CMT had set me apart. I was always a generally uncoordinated kid, and I dreaded P.E. My small, narrow, high-arched feet had always been (and continue to be) hard to shop for. My fingers started to kink up when I was in high school. And after, when I had a name for all the reasons why I was different, I had a two-sentence summary to explain the funny name to friends, to strangers, to doctors.
The MDA Care Center was the first place I felt known. By the time I ended up there, I was sorry I hadn’t known it myself sooner.
I’ve had help there, from my neurologist and occupational and physical therapists, learning what’s happening to my limbs and re-learning how to do things like tying my shoes and stepping off of curbs and holding pens and pencils.
There’s a lot I’ve been able to teach myself over and over as small changes have changed the way I do things.
This year, 15 years into my diagnosis, there are some things, for the first time, I can’t re-learn.
I use a button hooker and zipper pull to get dressed in the morning, and I use thick-handled utensils and rocker knives in the kitchen because my thumbs no longer flex well. I use a walker now that foot drop has reached my toes, which I mostly can’t flex on my own, either. I’ve stopped driving because I can’t bend my ankles, or feel the pedals even if I do get my feet on them.
This is not to say I don’t do new things, or can’t.
In March this year, a journalist friend of mine forwarded a job posting she’d received in her inbox — a digital communications position for MDA’s National Office. She thought I might be interested.
I have a degree in news-editorial journalism; I’ve worked for numerous papers and publications since I got it. I built a freelance writing career on the side of my editing career, and in the last few years, I built a marketing resume as well. I’ve published a small chapbook of poems, taught adult and high school poetry writing workshops, and last year won a literary fellowship from my state arts council.
Writing is something I can do, something I love.
It also has set me apart.
MDA, gratefully, thought so, too.
I started my position as MDA’s Digital Marketing Manager on June 20, the day our summer Live Unlimited campaign launched. That day, I created my own #LiveUnlimited image — me, buttoning my top button with my button hooker as I got ready for work. Doing things I can do.
At MDA, again, I feel known. And more than that, I’ve come to know an entire community of people like me — people set apart not by diseases, after all, but by knowing that each life is different, and every day is lived differently, and that’s OK. Every day we learn or re-learn, accept what we can’t do, and find — and grow from — the new challenges and opportunities that still, after all, do come. The MDA community teaches me that now, every day — a life line to me as I help send what I hope are life lines back out.
This month — this year — I am aware of CMT. I am aware of what it takes away. But I am also aware of how it played a part, unexpectedly, in bringing my life together.
We’re looking for talented and passionate individuals to join us in helping kids and adults live longer and grow stronger. Want to be part of the MDA team?