In first grade I threw up in the bathroom sink at school. After I received a bewildered scolding for not puking in the toilet behind me, I lay down in the back of the classroom and waited to be picked up. I don’t remember throwing up or the fever I likely had, but I do remember my dad carrying me bridal style out of the classroom to the car. I remember hearing my classmates bemoan that they wanted to go home too. I remember smiling limply in my dad’s arms as he carried me over my classmates’ heads — my Leo spirit fed by the drama of it all — and smugly thinking, “I can’t wait to watch cartoons.”
Sometimes when I tell people I am sick, I feel as though they see that first grader. The pukey kid with a flair for drama, who went home that day almost 20 years ago and sat in a nest of pillows while sucking down Capri Sun after Capri Sun and watching SpongeBob. I wish that were what illness is.
I became chronically ill somewhere between the ages of 19 and 20. I have not known a carefree day of cartoons and Capri Suns since. I was diagnosed with fibromyalgia and myalgic encephalomyelitis (commonly referred to as chronic fatigue syndrome or ME/CFS).
Every day I wake up feeling like I am dying. Every day, I fight incredibly hard to live any semblance of the life I dreamt for myself. Most days, I am not able to do anything other than my shift at work. I am unable to cook for myself, clean, do laundry, socialize — to do anything other than collapse into bed. Though I have been an artist since childhood, I rarely make art anymore. It has only been six years since this began, but it feels like a lifetime.
When I first became sick, all I wanted was for the people around me to understand what I was experiencing. As an artist, a lot of my practice became about explaining my illnesses, trying to show what was invisible — the excruciating full-body pain and fatigue, the grief of a once undefined future now colored by illness. My paintings became illustrative of my symptoms, and I explored new mediums in an attempt to communicate my experience more viscerally. Six months into the pandemic, I grew tired of making this work. The pandemic has been devastatingly revealing.
ME/CFS is a post-viral illness that shattered my body and immune system after I caught mono as a teenager. If I caught Covid, I don’t know if my body would be able to heal, if I would be able to live independently, if I would have any of the energy I fight to have now.
I have almost given up on being able to do everyday things again. I dream about going to the movies, eating at a restaurant, having friends over without masks and being able to hug them and sit arm to arm while we watch bad TV or do each other’s makeup. I have lost many friendships because of my health and the level of precaution I take. I have lost many opportunities. I have missed many special moments. I have lost a sense of community. I have grieved all of it.
Grief is a powerful indicator of transformation. It is an inevitable part of moving from past to present to future. During the pandemic, my practice has shifted from attempting to explain my sick body to imagining a future where sick bodies are cherished. I have made work that I imagine as a portal into a kinder time, where care and community are prioritized. I am beginning to make work that holds the grief of now, the desperate ache for tangible steps to make that future possible. I am searching for community in everything — holding closely in my mind every person who is in a similar place during this pandemic, whether they are sick, disabled, a caregiver, or simply trying to protect themselves and others from the virus.
Every day when I wake up, I still feel like I am dying. I swallow my grief down like fish oil. Then, I roll this illusory community of sick love and care across my tongue and teeth — sweet, warm, like hard cinnamon candy. I think about the art I will make, even if my body does not allow me to do it that day, even though I am not sure what futures are truly possible. For now, the soft burn of cinnamon on my tongue feels like enough.
Drew Maude-Griffin (they/them) is a teaching artist, writer, and curator in Minneapolis.