I went into college thinking I would be an art major, and then could not understand why I felt so spaced out in my printmaking class and wasn't able to function. I did not realize I was already having prodrome symptoms that foreshadowed what would happen in a few years, that my life would change dramatically and forever when I contracted the bizarre, viral illness that led to severe ME/CFS just before I left Oberlin, Ohio - but this same reality has been replayed in millions of people who have contracted enteroviruses, Covid, SARS, H1N1, and even the flu and developed a chronic, postviral illness in the decades since then. After that reaction to the printmaking chemicals, I just packed up my brushes, left my painted canvases in the art studio, and walked away -- determined to remake myself as a writer.
Over the next few years, I was very high-functioning, but used a clever trick when I could not read the thick volumes of books the literature majors read, due to my still-prodromal cognitive dysfunction: I took classes that allowed me to focus on reading poetry, and write it, along with short stories. I got into the small, selective creative writing program at Oberlin College, and managed to complete my Bachelor's degree before I was felled by the horrible virus, just before I walked (really, staggered) at commencement in 1992. I managed to visit Columbia University's MFA program when I was accepted there, but could never enroll.
In my 20s until I hit 30, I was able to live the "push-and-crash" lifestyle of early ME/CFS patients, where I could do a little bit more (though I was still moderate-to-severe) and then crash for weeks, months, or years with far-worsened illness. During that time, I got several artist fellowships as a poet and fiction writer - at Cottages at Hedgebrook, the Ragdale Foundation (where I went three times), and the MacDowell Colony. Because I was well-cared for at these residencies and meals were prepared for me, I was able to lounge around in a private room or studio and get a lot of work done - but after each residency, I crashed for six months to a year.
Then I began having what my friend Nicole (RIP) dubbed "perma-crashes," and I became fully unable to travel, dependent on full-time caregiving, and on top of that, I contracted Lyme and multiple coinfections in 2004 and 2007 from a dog and tick bite that turned cardiac and neurological and were repeatedly ignored by local doctors. In 2008, my life changed forever when I was in a terrible ice storm and spent over seven months trapped in the corner of my bedroom and the adjoining bathroom, going into respiratory failure and begging for caregiving the whole time. These events form the basis for my forthcoming book about the US caregiving crisis, about my gripping survival story when my loved ones tried to end my life for being severely disabled, to avoid the familial duty of caregiving.
My writing has always focused on bodily awareness, from my early days of being a lit. theory geek at Oberlin when I poured over theorists who centered the body and the physicality of language. Writing expends so much physical energy for me - the brain in particular draws a massive percentage of the body's mitochondrial energy, known to be dysfunctional and depleted in ME/CFS (and in me, I've had the tests). So, my work reflects both this harsh physical expenditure and my desire to infuse language with lifeforce. My symptoms inevitably impact and wend their way into my writing, so I have found ways to capitalize on that -- for example, my novel Origami Striptease is written mostly in iambic verse, as I tricked my brain into flowing better with a heartbeat-like backbeat. My poetry book Pathogenesis is a hyper-exposed vision of my symptoms and body parts. I published a lot of erotica for years, as it's a natural fit for writing while lying down, and allows beautiful, direct language the writer and reader don't have to cogitate about.
I have also published on other bodily topics, including intimate partner violence and disability - because social and cultural violence is an ever-present part of being a disabled person today. Research for my forthcoming book involves additional explorations of violent ableism including filicide (the murders of disabled children and adults, generally by family members - as the term is used by disabled people) and the mass abandoning of disabled people in natural disasters (as well as wartime and public health emergencies). Now that work has come to include family estrangement and scapegoating tactics, something I and so many people with serious illnesses experience, as we are gaslit and blamed for our own misfortune.
I am now a severe ME/CFS patients with accompanying chronic Lyme and coinfections, as well as multiple chemical and sensory stimulation hypersensitivities and POTS that go along with all of the above. I had a bout of probable Covid in the first months of the pandemic when there were no tests, and that compounded some of my issues. I live most of my life lying down. With ME/CFS, there is no passion or pleasure without prolonged pain and suffering. An acupuncturist who used me as a test subject once declared to the class, "this illness is like constant punishment." ME/CFS is tyrannical, maniacal, and punitive, so my passion and pleasure have to be cut into tiny bites now. I will never lose either one though, as they drive me both to write, to do a gazillion other random creative projects (like redesign my rooms, learn to fly on a drone on extra-good days so I can finally see the area around where I live, and make weird little stuffed animal outfits to have something fashionable to cuddle with). I remain ever-optimistic that future ME/CFS, Lyme, and Long Covid patients will suffer less and live more, and hope that my creative work will contribute to that progress in some small way.
More About My Work
I am a Midwest-raised, Massachusetts-based poet and writer and have been a Lambda literary award finalist, a winner of the San Francisco Bay Guardian fiction contest, a selectee in Best American Poetry, and a fellow at the MacDowell Colony, the Ragdale Foundation, and Cottages at Hedgebrook. I have been a finalist or semifinalist for numerous literary awards, and have been interviewed on radio programs nationwide. I have also given readings by video or phone at places like UCLA and Cornell University and at Sins Invalid and The Femme Show. My work has been included in literature, women’s studies, and disability studies coursework at Stanford University, UCLA, and other places, and is recommended on resource lists by NAMI (National Alliance on Mental Illness) SUA and SWDCC (Students with Disabilities and Chronic Conditions), the Asian Mental Health Project, the Directory of People Working in Disability and Sexuality, and other places I have not yet tracked down. My writing has been translated into Italian and German, and I have published in many a bunch of anthologies, magazines, and other venues.
Writing the shadow spaces of ME/CFS, chronic Lyme, and Long Covid