Living with CMT, Day 14,665

Time since injury: 1 month, 1 week, 5 daysPrognosis: Good..I hope

I am in the borderland, between healed and broken. And, in a weird way, broken was easier. The days and weeks after an acute injury bring a clarity of focus. They strip away the little things and leave simple plans. Rest. Heal. Rest.

And it isn't fun, the pain and stress. But it's also easier.

How is that possible? Because this in-between space is so tricky. I am not intensely broken anymore. And each little freedom brings new responsibilities. I am back to cooking meals (heating them up, anyway) and folding laundry and entertaining kids. I am teaching and editing. And the consequences of my weeks of bed rest... Oh, the clutter and dust. The toys everywhere. Chores left neglected for weeks. I can hobble on one crutch but it kinks my knee so I try not to do that very much.

And this ankle flares up quickly. I feel slightly better, so I do more, then I feel worse. It's a troublesome cycle. Life doesn't wait.

On the positive side, I am making a conscious effort this school year to slow down with my family. Shelve my usual long to-do list in favor of dedicated time with my children. We spend so much time distracted by chores and activities. I asked Ian, "What do you want to do?"

We played Candy Land and trains. We set up a castle game with dragons and an orange car. Oh, and a zombie in the forest. We laughed together. It was lovely to sit and be with him. Not pulled in ten other directions (except those neglected chores).

The downside was that I was up and down, sitting on the floor, crawling to protect the dragon from the zombie, not elevating my leg. At all.

The cycle. Again. *sigh*

I see the specialist on Thursday. Hopefully he had some insights or predictions for me. This limbo is difficult for my entire family. Patience wears thin. Except there is nothing that I can do. Except wait. I heal so slowly. Argh.

On another path, a much happier path, I had a random moment that showed me why awareness is so important. Next month is CMT awareness month and my online friends and I have awesome plans.

Anyway, this CMT moment was at Anika's Nutcracker rehearsal. I was with my crutches and I overheard the choreographer's mother share with another mom that she had broken her arm in three places. A fall. And she has to be more careful because of her neuropathy.

"Me too," I said.

And I became the first person that she has ever met with CMT. I have known her for two years. I have been frustrated with myself that I couldn't volunteer more. I just never spoke to anyone in the Nutcracker show because CMT feels like such a tangle, so hard to explain.

I have a new idea. I am in a rural community and I've met two people within my little town. So I have a very spontaneous theory.

We are not rare. Not nearly as rare as the anonymity of our never-heard-of disease implies. No, we are not rare. We are hidden. We cope so well. We have compensation strategies and accommodations and we are right here, yet no one knows.

And our greatest strength is each other. It's wonderful to feel understood. So I hope we can connect more, though the internet and in our communities.

I'm excited to help with Awareness month. We have fun plans. Stay tuned. Now, I better get rest. I will close with a few rainbow images of Anika. She downloaded iBooth all on her own (asking my permission of course). I love discovering these playful images on my phone, especially since school isn't going easy for her right now. That's another post, though. I love these. Bright girl :)

Wishing you rainbows today :)