Loss is the softest word.
It’s tufts of hopeful grass on the hardest ground. It’s the sound of an eclipse slipping behind the clouds. It’s what we reach out to when we find our hands are as small as a two-year-old’s. It’s a rough fold in the soul. And for most people, it is something inextricably caught up with death. But some six years ago, loss became a part of my life. The softest word became a constant murmur, then a roar—a susurration of sobbing flies I could neither bat away nor hide behind. Because when you get sick—proper, chronically sick—loss is not something you go through. It’s something you become.
I was first crippled by illness in 2009. I say crippled because I experienced episodes of illness throughout my adult life, harbingers of the real thing, little Cassandras standing in the dips and drifts of my life shouting warnings to no one. I was battling depression back when my friends were battling Pokemon. I suffered from constant, violent panic attacks which cost me a degree, several jobs, and a fiancé. But it wasn’t until 2009 that the big one hit. Here is what I was back then: a mostly manic 23-year-old studying three degrees at once. I was completing a dissertation on John Cage, I was writing poetry at the rate of breathing in and out, I was going to translate Chinese literature for the masses. I already had a diploma in operatic performance. I was actively and wholeheartedly unemployable.
It didn’t vanish overnight. Rather, it peeled away slowly, like a temporary tattoo, until all that was left of me was bare skin. To this day I don’t know what caused it. Maybe it was the tap water I drank in rural China. Maybe it was that bout of swine flu. Maybe my body was protesting stress in the only way it knew how. But by September of that year I was sleeping twenty hours a day without rest and my brain was filled with a fog that belonged back in San Francisco. At first I fought it, I built barricades of books around my bed, my dissertation a breath away if I could just pick one up. All they did was make it harder for me to climb out.
And so loss began to become me, in both elegant senses of the word. Looking back, it seems strange how long I held on, how slowly I stripped my life to the bones. I dropped the dissertation; I dropped the English major. I scraped through the degree in Chinese, but only because I abused pseudoephedrine to get through the exams. I translated a few poems and stories, but working through the fatigue was so hard that people stopped asking me to do them. My editing clients stopped coming back when they realised I couldn’t make deadlines. I published poems, but I didn’t have the energy to write new ones. My boyfriend supported me financially, because there was no way I could. Everything I attempted was less than what I wanted and needed and more than I could do.
Two years after the onset of symptoms, I was diagnosed with fibromyalgia. I was diagnosed with ME/CFS two years after that, although it took three more years to find someone who could actually treat me. I had already been informed that I suffered from bipolar and BPD, which was if nothing else was better than believing I was crazy. But it turns out chronic illnesses really are like Pokemon: you gotta catch ‘em all. And after all, misery loves company. I have a list of ten now, fleshed out by OCD, IBS, interstitial cystitis, chronic migraines, hypothyroidism, and hidradenitis suppurativa. I take twenty-three pills a day; I see doctors at least twice a week. Survival is my full-time job.
And so this is me now: a mostly sober 30-year-old, because I am medicated to the gills. Loss has made me both younger and older than I ever thought possible. I cannot work, and mostly, I cannot write. I spend my days in small pursuits, because the nature of my illnesses has shrunk my world beyond the reach of anything larger. I am lucky, luckier than just about anyone else in my position, in that loss is all I have to contend with. I can look at the stars and not be scared that they will be the only roof over my head tomorrow night; I can take the time to look after my body instead of pushing myself to collapse so I can eat. I have a good life. But it is a life haunted by the softest word. Everything that I do is an echo of what might have been. My hands are those of a two-year-old, and all I am is grasping at what I cannot have. Every kiss is an eclipse slipping behind the clouds. Every day is growing tufts of hopeful grass in the hardest ground. And it just keeps going around and around and around.
May 25th is a global day of protest for ME/CFS. If this piece has spoken to you, I urge you to take part in the #MillionsMissing campaign, either by attending a protest or spreading the word on social media. The best shot we have at becoming visible is by being heard.