CMT Alphabet: C D E

Days rush so quickly! This week had Back-to-School for my kids, and my first grader wanted him to walk him into the room and help for awhile every morning. And we celebrated his birthday in class on Friday. I had a paid photography shoot (hurrah!) for a dear friend and lovely baby. All good things. All making the clock tick very quick. We get three letters in the CMT Alphabet today.

First, creativity.

Chronic challenges require creativity. Want to know five ways to finish a (seemingly) simple task? Such as opening a jar?

First, try the normal way. You might get lucky. Without hurting yourself of course. That twinge could actually be a nerve pinching that will make your fingers go numb for weeks.

Not open yet? Tap the lid on the counter. Gently. Without breaking the jar. Or dropping it because that happens a lot. Dropping things.

Jar still not open? Get a butter knife (sharp knives are dangerous) and tap the lid with that. Try to dent it. Without missing and bashing the counter by accident because that eye-hand-coordination thing can be tricky.

Still not open? Find the jar-opening-tool that adds leverage. As long as you can grip it tight enough and twist without dropping the jar. Curse at the jar a few times because that might do the trick.

Still not open? Find someone else in the family, even your ten-year-old, and ask for help. They can probably manage it on the first step :)

We all have our work-arounds. Our compensation strategies that can make the journey look easy from the outside. We are so creative!

And we're good dreamers.

Dream of good days. Simple dreams that can feel far away sometimes. Days without pain. Or struggle. Or fatigue (more on that later :)). Days that have family and laughter and success. Dreams of days when CMT (or any chronic challenges) feel small. Personal dreams.

Then the bigger dreams. Understanding. Oh, please understand my story. Dreams of awareness. Especially with doctors. Beyond "I read a page about CMT in my residency," or, "What is CMT, exactly?" Dreams of acceptance. What a lovely dream.

And the biggest dream of all. Cure. Cure this aching, tired, weakness. Cure the genetic chance of passing these challenges onto our children. Cure the fears of degenerative symptoms. A cure is the greatest, loveliest dream of all. Make CMT history.

Because enough is enough.

The idea of Enough is big for me. As a child with an undiagnosed, invisible illness, I felt that I had to work twice as hard to get half as far. Yet I worked and worked. I wanted to believe. Even while I snuck to the back of the kickball line and hoped that our team got three outs before I had to kick. I wanted to believe that I just needed to 'keep my eye on the ball' and 'try harder.'

I tried harder. Did I ever. And now I struggle with overcompensating. If I'm not pushing to my limits, I must not be trying hard enough. So I walk a razor-edge of overwhelm. I want to prove that CMT won't hold me back. And I have an age-old motivation of "The better I hide these challenges, the more successfully I am managing them." I want to achieve everything that feels 'normal'. Except I'm not 'normal'.

I need to be enough. Feel enough. Even when I'm broken. Even when I'm damaged. I need to believe that I can be whole and broken all at once. Validate my limits. Honor them. Thrive within the world that I create. And not measure it against outside expectations of Enough.

We all struggle with Enough. Needing to do more. Be more. Have more. Enough never feels like Enough.

So today I am going to take my breath. Let the moment be enough.

Which is a good dream :)