It’s with a feeling of quiet achievement and sadness that I continue putting my Patreon and my website together. The achievement feels quiet because everything takes longer. Sometimes, it feels like I’m writing and developing the website through a sheet of nearly opaque glass. The sadness is about the time
Sometimes, I drive myself away from the page with the expectation that my thoughts and writing “should” be profound and uplifting. I come here now to remind myself that my creative work, whether sacred or profane, is what I live for. My body is wracked by pain and exhaustion. I
Hello Dear Ones, To those of you who deal with fatigue on an ongoing basis, the phrase objective fatigue scale might create cognitive dissonance. I get it. However, when I talk to Carmen (my dear wife) about how tired I feel, I throw about numbers like 2 or 3 out
I find it so hard to trust – to trust doctors and even to trust myself. I’m not sure which of these came first. I understand that my long-term difficulties in working with doctors stem from the first four years of my illness when they didn’t believe me. It was
Hello Dear Ones, Alienation feels okay, until it isn’t. I walk in a half world: on the outside, looking in. I want to speak, to tell someone what it’s like. It seems I only get to this place when depression has yanked the floor out from under my feet. It’s
Hello Dear Ones, There’s nothing worse than feeling powerless. Obviously — at least to those who are chronically ill — this is the cornerstone of our problems, greater than any pain or symptom our body/mind can throw up. It’s the reason I started this Patreon – to reclaim my power.