Thank you, followers and friends, for patience. If you’re chronically ill, interruptions can derail your routine, even your life. Or the interruption itself becomes a change, much to your surprise. I tried to achieve a new “normal” after the mothball episode and anniversary “processing.” With Lyme disease, Epstein Barr, and Ehlers Danlos Syndrome, I achieve an appearance of normalcy with great effort and lots of cover-up. “But you don’t look sick,” I hear. “But you’re driving again, but you went to the store, but …. but…” Some of this comes from friends who want to believe I’m well, and I love them that much more for wanting wellness for me. The truth, though, is that there’s a thin line between wishing and denial. I may get better, and I work on getting better every day, but well isn’t within reach. I’d be in deep denial myself if I believed that, as I used to, about a decade ago. My selective interactions in public contribute to the well-wishing, too. No one sees the worst moments: when I can’t quite stand up in the morning; when a jar slips from my swollen hand onto the floor and I spill out too many cuss words; when the full-body muscle pain has me gritting my teeth and once again wondering if my writing will go to the large trash bin around the corner if I die soon. I’m not alone, I know. Wouldn’t it be great if there were some alchemy that made the crowd of folks with chronic illness better simply because we knew we had this suffering in common? It informs our perspective, but such awareness does nothing to alleviate symptoms. Then, without warning, some of us had to add Covid and its aftermath to other conditions, illnesses, or disabilities. I would have told you it was impossible, that Covid would simply mean death for people like us, but it didn’t. I could not have known that it was possible to add even more strange symptoms to the host I already had, but it is. It’s okay. It’s the price for being alive. I pay it gladly.
It took me a long time post-Covid to start writing again, and the world has moved quickly with its own cascade of interrupting factors, during that time and even in the weeks since my last post. I still want and plan to post a recording of my experience with Covid, because to date, I have been unable to find someone else who lived through what I did and survived. If you’ve read my posts and you went through something similar, feel free to message me.
Although we are not yet in a post-Covid period, our society and country keep pressing to live as though we are. In my small city, 12 people died last week. I had hoped, by leaving a record of Covid with details, I might increase the number of people who wanted to prevent it, who would see the saving grace in vaccines, or failing that, in simple masks. It’s too late for that. Covid will become endemic. It will be with us for years, if not forever. When I tell people what happened to me with Covid, as briefly as possible, but also letting them know how grateful I am to be alive, they stare. It means nothing to them. Their faces go blank, I’m not sure if they don’t believe me or they simply prevent their brain from processing the information. Six months ago, the responses were different, and, well, responsive.
I may turn my posts here in two different directions. I’ve collected a lot of information about post-Covid recovery. A great quantity of helpful information, I believe, is not reaching people. Long haulers are suffering in isolation and without adequate information. There’s a need for simple tips for coping, recovering, things to ask the doctor, times to see a physical therapist, and much, much more that needs to be shared.
I continue to believe that this illness needs to be documented, in the same way the Brits wrote diaries during WWII. There simply needs to be a record. It won’t be short. It will be useful. With Covid, as with most of life, details matter. Mies Van der Rohe is usually credited with saying, “God is in the details,” and who knows who first said, “The devil is in the details.”? The details are indeed where success and failure lurk.
As for powerful interruptions, the coma takes first place. I think what we like least, perhaps resent most, about any illness or limiting physical condition are the interruptions they cause. Sometimes we can catch up again. Sometimes we lose our place in the linear movement of time, of life, left to watch as those who were once with us move on, move ahead.
I’m climbing out of my most recent life interruption after I happily volunteered to help with local nonprofit arts activities, with said activities having wiped me out physically and energetically. It was the first time in three years I’d attempted that level of activity, reading poetry, viewing art, and helping things run smoothly at events. No one saw my undoing afterward, except my cats. For as many days as needed, I’ll stay still, to the point of big boredom, and stay home alone until getting in a car doesn’t involve risk. Post-interruptions, I’m still climbing toward the possible, if not another new normal. I’ll make it back here sooner than later. In the meantime, I’m grateful to you, fellow reader and life traveler. Words are everywhere in over-abundance. Thank you for reading these.