Posts

Image
Corkscrewed! Me and My Lyme! Just when I thought there were no other ways to be pathogenically screwed, I have been corkscrewed. I have spent most recent months in what Pamela Weintraub called, "the gullies of sleep so black that, except for the nightmares, I thought I might be dead," except for me most of this was waking sleep. It's hard to describe the vacuity of my days and nights, except to say this much illness is like losing time while being exceptionally present to it, not a bit dissociated from the torture. On November 1, I received a diagnosis of Lyme disease in addition to my other ailments, and my latest Western Blot test was positive, indicating the spirochetes have taken hold. With Lyme compounding the already-debilitating brain dysfunction of CFIDS and MCS, my writing has become flat and pragmatic when it comes out at all. One doctor noted "Dead Creativity" as a common personality change of Lyme, but the cognitive problems go beyond that. As A...
Image
A Normal Reunion I had on a peach rayon dress under the black robe and I was about to address the class of 1987. It was my idea for the three valedictorians to talk about the past, present, and future. Rob, whose best friend had died several years before of a rare disease, covered the past. He and I emailed years later about his lymphoma and my CFIDS (we both got sick in our twenties) but first my friend Kim was talking about the present. There were over 400 kids in cap and gown and at least a thousand people in the bleachers and I was terrified to stand in front of them and talk about the future. I had such severe stage fright, in fact, that I had been liberally using over-the-counter sleeping pills in the months before. My hair was big and lacquered that night. My sister once talked about how she never saw adulthood as some great thing. We both felt a sense of dread about it. I was uneasy that night, as if I knew the cliff in front of me – knew it like a Wile E. Coyote who h...
Image
Who Is That Bubble Girl? I have to live a life immaculately free of chemicals: a bubble life. And by chemicals, I mean, the crap that has infiltrated almost every known product since WWII: the fragrance in other people's shampoo, the Tide and Bounce embedded in clothes, the formaldehyde in cabinet wood, the adhesive holding the imaginary world in place. I'm talking about modernity, and post-modernity, and air fresheners hanging from rearview mirrors; cigarette smoke and wood smoke. In the Tarot deck of access, I'm talking about: The World. That's why I live a life of virtual exile, down a dirt road far, far away. After contracting chronic fatigue immune dysfunction syndrome/myalgic encephalopathy (CFIDS/ME) at age 23 – a gripping, crushing, suffocating illness that seized me by the ankles and dragged me under – I thought it could not get any worse. In the year before, I had been riding my bike between cornfields in Ohio, miles uncoiling behind me. I had prodrome symp...