HeartStrung

It was a cold night, late in fall or early winter. We all sat in the "Sunday room" together, each in our own cozy spots around the fire. My girlfriend sat in the corner with her knitting needles and a blanket. The metal needles clacked against each other as she moved rhythmically through the motions. I watched, as mesmerized by the flow of it as I was by the fire in the fireplace.  "I always wished I could learn to knit," I said. She looked up, smiled, and said, "I will teach you." That night, she gave me the basics: a pair of straight long needles, hemp yarn from her basket, and the how-to of the knit stitch. I awkwardly practiced the stitch over and over, my elbows stuck out to the sides, twisting my fingers and sticking my tongue out while I tried to learn this new thing. She gave me tips while I sat near her and reminded me that with time, I would naturally find comfortable ways to hold the yarn and keep a steady tension. It was months before I finishe...

  Photo by Fred Kearney on Unsplash The colors bleed together     into a mass of indistinguishable shapes a swirl, like the background     when you spin on a tilt-a-whirl the rising discomfort, straight from the belly, the pressure at the back of the head, a chorus of discomfort     singing above a symphony of symptoms.

  I reach, right arm across,      twisting paraspinal muscles,          stretching but only succeed     in straining          inflamed tissue.

 Everyone is so excited to be sort of, possibly, probably, in small ways, coming out of pandemic life and "getting back to normal." I want to punch something or cry every time I hear, read, or otherwise take in someone else's feelings about this. As I inspect these feelings, I've come to realize that I've got layers on layers of trauma surrounding the pandemic. My trauma differs from the trauma that all the "normal" people talk about because it's compounded trauma. For example, pandemic isolation for me comes on top of a growing isolation that had already been happening for 9.5 years before the pandemic started. And my isolation won't end when pandemic isolation ends for all the healthy able-bodied people in my life. It won't end probably ever. And that's just one example.  I feel trapped a lot lately. This isn't a new feeling for me. I have a sense that I've felt imprisoned more often than not in my life, penned in on all sides a...

  Dear Reader, Are you out there?  This month in my writing group our theme is "Trust" and I have so much to say on this theme. First off though, I wanted to address you because I have failed you by disappearing, again . I remember when I first got sick and I was desperately searching for answers and connections and really just anyone or anything that could relate, blogs were such a safe haven for me. Every once in a while I would find one that sounded like me and I would devour it, post by post, hoping for answers for myself. There was one I will never forget. The writer described almost exactly the same symptoms and progressions as me. It was incredible. But then the posts just stopped. The writer never said if they got a diagnosis. They never said if they got resolution. They never said if they got sicker or more well. I was left just hanging there wondering, which was all too similar to the same experience I was having with my body. It was so...disappointing and discourag...

At my last appointment, my doctor said my blood work looks good. All of my numbers were in the normal range including my inflammation markers. "This is good news," he said. "I think we should lower your dose of * medication* ." If you've been around my blog, you probably know how I feel about taking medications. I'm not afraid or "anti" about it, but in general, if I can make do without it or with less, that is what I will choose. So I agreed. And he sent the new Rx in to the pharmacy and Mr. Amazing and I left the appointment feeling proud and satisfied. I was all, Look at me over here, improving. Didn't I tell you I was doing really well? I knew I was doing really well. I could feel it. ~ Since the beginning of June, I've been taking half the dose I was taking. (Side note: for reasons I'll never understand, the cost of the Rx at this dose is the same as the cost for double this dose. What kind of trick does the pharmacy thi...

Hope made visible In the tiny buds of spring Giving us new life

This has been a big year for me so far, but I've failed to keep up my blog, so let's catch up, shall we? Most of you probably already know that I started a business in January, selling my hand made goods. It's growing slowly, and I'm okay with that. It has given me at least a small sense of purpose which is so helpful for my mental health. Many of you also already know that I had an article published in a magazine. Being published has been a long time dream of mine and it felt incredible to have the opportunity.              (My article was published in the April issue of Holl & Lane magazine.) Now for the stuff most of you don't know: I had decided to take some time off from going to doctor's offices at the beginning of this year. But during the last days of December, a rather large, ominous looking mass was discovered and all the doctor-y people got up in a tizzy and had me running around to a bunch of different locations, getting ult...