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
Jan 20, 2020 Here we are, twenty days into a new decade and weariness remains, settling over me and dragging my heavy bones into the earth. We enjoyed a few days of snow, then a couple of days of chaos as snow alternately melted, froze, and fell again, making
December 11, 2019 I wake, tired and nauseous, knowing I will have to go back to bed to get more rest. A few broken hours of sleep won’t cut it. But I come from the shower – the heat having warmed my bones, settled the pain, and opened my
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
Carmen drove us into the sun this evening to show me something beautiful. I’ve always found the ocean revives my soul. Although I could see the beauty this evening, I had trouble feeling it. You still have to try. I had this other-worldly feeling of dreams I had when I
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.