Communion Of Dreams

Just thought I’d post a bit of an update on how things are going.

In May, I wrote this:

After all, this has changed my life in some significant ways. I’ve had to quit as a practicing conservator, a profession I loved and was very good at. I have more physical problems related to the disease: more pain, hand spasms, Restless Leg & Arm Syndrome, episodes of dizziness/vertigo, and some annoying lower GI and bladder issues.

But all of those symptoms are relatively minor, and there are things I can do to help deal with them. My usual Rx meds manage these new pains well. The hand spasms are rare, and I can usually just stop doing whatever it is that sets them off. Low-dose THC edibles help control the RLS/RAS and help me sleep better at night. Meclizine manages the balance and dizziness fairly well. And I’ve just learned new cues from my body to manage the GI/bladder issues. I mean, it’s not ideal, it wears me out each day and I’d rather not have to worry about it, but all in all it’s mostly just an annoyance at this point, rather than a debilitating diagnosis.

As this article presents very well, having what is called a “dynamic disability” (one that has symptoms that change in severity from day to day) means never quite being certain of where things stand. Some days are OK, and I can get along with minimal fuss. Other days come with more vertigo, or pain, or hand/leg spasms that limit my functionality. It keeps you off balance, and means that all plans have to be somewhat tentative.

But one thing I’ve really come to understand in the last few months is that I’m not fragile, not broken.

See, I spent a lot of last year feeling … fragile. I had just come to understand that I had something akin to the genetic disease that runs in my family. And yet, not. It left me feeling uncertain, somewhat abandoned. And, having lost both my parents in early adolescence, feelings of abandonment/insecurity tend to hit me pretty hard.

But having lived with this for a while, I’ve adjusted. It’s a dynamic disease, but I know the general outlines of what to expect, and how to manage the symptoms reasonably well. Yeah, the disease has progressed — I have more pain, more problems with my hands cramping after use, more instances of dizziness and clumsiness. But I’m better able to cope with those problems when they occur, and for the most part I feel much more settled, much more stable.

So, life continues. As do changes. I recently donated all my bookbinding models, artist’s books, and other related materials to Special Collections at MU. I’m making steady (and very satisfying) progress on repairing/repainting our historic home, though I now realize that it’ll likely be next year before I finish that project. There’s no hurry — I plan to be here for a while, yet.

Jim Downey