I haven’t written in a while. Not since January in fact. Lately I’ve been spending some time thinking about why that is.
It’s definitely not for lack of difficult or painful experiences related to living with HIBM. I have come to realize that such experiences are built into my daily life and will continue to be a part of my daily life, for the rest of my life. In some ways, these last few months have been harder than most- I have attended a conference where I met a handful of other HIBM patients, all of whom were wheelchair-bound, except one. I have stepped out into the world now on numerous occasions using my new cane, forcing me to not only confront the fact that I am getting physically weaker, but also forcing me to endure extreme levels of self-consciousness and emotional discomfort. A level of vulnerability I have not experienced until now. And I recently returned from an annual vacation destination where evidence of my progression, as manifested by my difficulty in climbing up the same little hill I’d been able to climb so much more easily in years past, made it extremely challenging to stay calm and not fast forward to the day I won’t be able to climb it at all.