During the last few years, I’ve been periodically absent from places and activities due to being overwhelmed and needing to spend time refocusing and healing. My absence during the last few months has been a very different and terrifying creature.
In the few years since the diagnosis of the Very Serious Illness, I’ve experienced a slow cognitive decline unrelated to that illness. Initially, it took the form of being more absent-minded than usual. Over time, I began to lose my ability for deductive reasoning, visualization, and creative thinking. The losses occurred slowly in small increments and were attributed to stress and illness.
During late April and early May, the symptoms improved markedly and suddenly and I felt like my normal self for the first time in months. The improvement was short-lived, however, and by the end of May, the cognitive issues had returned, worse than they’d ever been. A host of other symptoms accompanied the rapid decline – debilitating stomach pain after meals, skin rashes, nausea, terrible fatigue, vomiting, panic attacks, and sudden, stabbing joint and muscle pains.
Right around that time, a friend who lives out of state reached out to ask how I was doing and how my writing was going. I responded with the text that serves as the title of this post: words gone, self lost. It wasn’t hyperbole. I literally couldn’t find the words to tell him how much of myself I’d lost. I slept, I ate, I went through the motions at work, but the characteristics that make me who I am were absent.
In my more lucid moments, I questioned why I was experiencing these symptoms that had no apparent clear cause. I asked how it could be that I could pick up a story that I had written and wonder who the author might be . I wondered how it was that I could lose an object that I was, in fact, holding in my hand. I wondered how I’d gone from being able to rattle off questions while watching Jeopardy to struggling to remember the host’s name and how the show works. I pondered the possibility that it could be a relapse in the Very Serious Illness or that it might be early-onset Alzhiemers. Mostly though, when my thoughts were clear enough to consider the situation, I just worried that my life, as I’d known it, had ended.
It wasn’t until I began asking why mid-spring had seen such drastic improvements that I stumbled on the source of my misery. Circumstances, including traveling with a vegan co-worker, created a situation in which my diet changed radically and most of my choices were whole foods, with very little processed foods or baked goods. It took some digging and several medical appointments to confirm what I’d slowly begun to suspect – wheat and gluten, a protein found in some grains, are not my friends.
Cue some radical dietary changes – nothing with gluten again. Ever. In other words, 2/3 of a standard American grocery store is now off-limits. I am cultivating a whole new level of paitience as I find myself reading every food label when grocery shopping. I am also learning to cook favorite dishes differently. I am learning that eating out can be a minefield and that getting ‘glutened’ means being out of commisison for several days. (For a depressing but enlightening indication of how much gluten there is in our diets, check out this Sources of Gluten list.)
I could bemoan these dietary changes, but after a full season of careful eating, I am instead throwing confetti in celebration. The physical symptoms I’d experienced are largely gone and the cognitive ones are much less severe. While I struggle at times to recall things and to find the correct words, I am writing (obviously), doing creative work, and actively path-working again. I am not yet at 100%, but I will get fully back to myself – words flowing, self restored.