CMT and Questions

Life is one question after another. And we hope for answers. We find some answers. They may be smaller questions, like, “What’s for dinner?”. Or larger, “Like how will chemo medications affect my genetic nerve condition?”

And there are no studies to help with answers. Because some diseases are too vague or difficult to structure studies around. How would you gather similar stage patients with one rare disease when they get another life changing disease? How about that??

So, anyway, big questions. And days pass while we wait for answers. Or we answer as best we can. Or we wish for other answers that are out of reach.

I do my best with the answers I can hold. I forgive past answers. And, maybe, just maybe, I can pass along a few of the answers I found along the way. It’s tough, all of it is tough. But I’m also filled with gratutitude to be here to discover more questions. I’m angry that the numbness in my hands that started after chemo seems to be for keeps. I hoped it would go away, and it hasn’t. But I’m grateful they still manage to type and take photos.

The past few years brough so many questions. And I don’t have all the answers. I cannot help everyone. But it’s never been about everyone. It’s about one. One person I might be able to help. One question that I might be able to answer.

Regardless, it’s important for me to document some of my experiences because there are other people with CMT (hereditary neuropathy) that need chemo. Or take this new medication that I’m one week into taking. Or mange insomnia. I would have appreciated words of someone that went through any of those things as I faced the questions. Wait, I am facing the questions. One day, one question, at a time.