Living with CMT, Day Forever

Living with CMT, Day Forever

Back in the day, I chronicled my days with CMT. Until the entries faded away. Because I grew tired of saying I’m tired. Again. I’m frustrated. Again. I’m overwhelmed. Again.

Right now is CMT Awareness Month. I want to add to the story. Raise awareness for all the people living with these challenges every single day. Yet I feel like I say the same words over and over. It’s hard to add newness to a story that doesn't seem to change (except maybe for the worse as symptoms increase).

CMT is no joke. It’s every day on shifting sands. Never knowing what the next day will bring, except for limits and loss and frustration. It’s putting out a happier story to the world, because you don’t want to throw epic pity parties, you don’t want financial fallout, you don't want to dwell in darkness. 

So day to day, I say I'm fine. 

And yet CMT is everywhere. A sense of unease. The clatter of another dropped lid or fork. The blanket of fatigue that muffles ideas.

Managing CMT is a long haul. Facing similar challenges and over.

I ask myself, what do I need? How can I make this situation turn around?

And the answers aren’t as easy as the questions. Rest isn’t enough (never enough rest). Activity is important for distraction and inspiration. Yet it can trigger flares. Financial help would be enormous. Yet how to get financial help while trying to endlessly rest? Stress aggravates everything.

I scatter to the wind. And feel all the edges unraveling. 

So I take a deep breath. Because the challenges that I face are not unique to me. It’s just that CMT turns up the volume. Disability adds to the intensity. And I must personalize my ideas about success. Because I cannot do what everyone else does. That is the shadow, and also the light. I cannot do what everyone else does. That leads me to empowerment.

Empowerment is everything.

I do have to say, I feel scared any time I talk about CMT. I worry that people won’t hire me for photography or writing projects. My family is already in crazy financial stress after my husband’s unemployment and my changing employment circumstances. I love the creative life and it’s a gift to make art. 

At the same time, I need everyone to know that I manage CMT so that I can be present for important moments. I clear my schedule in the days before an event, and after the event. I show up with a sense of gratitude and investment. I never, never take clients for granted. I appreciate your faith in me.

And, when you support me, you support my family and my health. Because having financial security allows me to rest, take my kids to a movie, and, hopefully, once those debts are paid down, get help with housework or yardwork. Artistic quests distract me from constant disease-management. 

Life needs living.

I appreciate your support as I try to live with authenticity. To share challenges in a way that shows wholeness. Thank you for supporting my journey.

Now, let’s cure CMT. Learn more about the efforts towards a cure at the Charcot Marie Tooth Association and the Hereditary Neuropathy Foundation.