In Life With Chronic Illness, Your Days Are Lettered
I live in a world of acronyms. At first, they were purely medical. EDS, POTS, PCOS, UC, MCAS, CPTSD, IBD, etc. They, along with their cousins who insist on being called by their full names like some pretentious teenager after returning from a semester abroad, would accompany me to doctors’ offices. Once there, I’d rattle them off in a jumbled version of the alphabet that almost sounded like a beat poet with an even more than usual preoccupation with death and suffering.
Soon, as these all caps conditions began to morph from a cluster of words into unbearable clusters of symptoms, I became surrounded by even more acronyms, this time representing other humans and the systems and organizations they worked under. I was led to believe these abbreviations were designed to take care of their corresponding conditions that were in turn taking up space in my body without paying rent, much like the folders of test results, paperwork, and imaging discs stored in moving boxes around the house.
As the looks on caregivers’ faces became more and more confused as I tossed them around, beginning to forget that not everyone spoke this Language of Disability, I began to pray for something, anything, that would make my inner reality visible to the world at large. I desperately wanted an interpreter so my labels could be recognized, expanded, researched, and dealt with. Anyone with a disability who has gotten this far through life and this perverted Sesame Street lesson is no doubt already emotionally shaking their head at such naiveté, or just laughing. They know what I now do. That no amount of time is enough to engage someone in a lesson semantics, intricate medically dynamic systems, social service blind spots, and what symptom or person corresponds with what tile of Satan’s Scrabble.
To this day, I am honestly not sure which is more painful, the betrayal of my body and the community I thought was supposed to protect me, or that of the letters that brought me books, pen-pals, and subtitles to foreign films. Normally so helpful in communication, these simple little symbols that used to be my friends, my tools, my means of navigating the world with compassion turned on me with all the fury a font could muster. Instead of helping me with survival by giving names to pain, they refused to act as guides. Instead, they laid themselves out on a page, making me look more like a car than a human. A prisoner whose real name was stripped away long ago by illness and insufficient government programs and ironically replaced by a string of meaningless lines on a hospital wristband or stuck to a tube of blood.
Was it my fault? Did the repetition, and ultimately subsequent TED-Talk-long explanation of their true meaning insult them? Were they pissed off that their power was stripped away by constantly having to repeat them as shorthand for galaxy-sized complex experiences of disease? Did they choose to rebel against a system not built to care for actual, nuanced souls, but dissected them into little bits of a whole, just like themselves? Could it have hurt them to see their own reflection as nearly useless to anyone without a translator? Or did they just become simply as confused as me?
I still hope my letters come back as friends. That the alphabet I learned as a child will combine and recombine in more of the glorious possibilities we were promised, in the forms of stories full of life instead of languishing on a chart or stuck in a file cabinet. Not reviled, misunderstood, or short-changed. That they return to their nature as incantations, anecdotes, lyrics, poems, and even if a death sentence, at least a full goddamn phrase. Maybe it’s time to save my darlings. The world hasn’t been kind to either of us. Let’s go show them what we stand for.
Getty image by Cold Snow Storm.