Last summer, I quit a performance I was doing with my collaborators in Calgary and booked a ticket home. I quit because my body had quit. My body was having “seizures” all the time, even when we were all three in our Charlie Chaplin costumes, inside the space we’d made to “live” in—a cozy little cell copped from the Chaplin film Modern Times, with a viewing window as in a zoo/museum exhibit. I couldn’t keep the movements from happening, the jerking of my arms and legs, even when the eyes were on us. I had to laugh and wink toward the glass as though letting the audience in on the joke, this Chaplin who has no control, this master clown who’s lost even the smallest amount of mastery over their body.
Later, the tears wouldn’t stop as my neck went rigid and jerky and felt like it’d snap. I barely got myself home, to the place I was housesitting. I barely got myself online, got a ticket. On the plane I held my neck in both hands to keep it from spasming too obviously. I turned my face to the window and cried until I ran out of tear-water. My collaborators empathized, they said it was ok, that I needed to forgive myself, that health comes first. I’ll never forgive myself. I am not a person who quits. I don’t get bested by pain. I suffer through it.
I suffer through, until it’s impossible. I need to dig a grave for the brightest part of me. I can’t act on stage any more, or in small enclosures as Charlie Chaplin, either. I don’t know when my limbs might jerk, or a loud, guttural, noise might leap out. Unreliable. I flew home saying goodbye to myself. I’d delayed this goodbye for so long—at least a year past the point when my hands flapped by themselves on the stage floor as I “lay unconscious” as a—hilarious!—character in chronic pain, in a play that had been written by a mentor of mine. I held my body still with force, to keep more flaps from polluting the performance. Later, she told me I’d ruined her show. Slowed it down. Did I? Added whole minutes with my pauses. Did I do that? Brain fog? Blackout? Did I fuck up that badly, or was I being gaslit? Did it matter? That one moment with my hands moving on the floor without my consent was enough. Unpardonable. It didn’t matter about the rest. If the instrument doesn’t function, it can’t be played in public any more.
I delayed the end of things, long past the point when performing meant giving up everything else. It’s meant that for years—five years, ten. An ascetic existence with all energy bent toward the magic hour on the stage. The rest of life caves in, becomes nothing but flare. All energy consumed in the time with the audience. I was in love with it. There’s something in me that isn’t there until I’m someone else, saying someone else’s words, making new some story that’s been rigidified on paper, making that magic feeling grow in the room under the stage lights, forgetting myself, allowing for other, allowing for a new sense of my physical self—how it stands, moves, where it holds its fear and power. How my voice is habitually caught, and how I can release it in larger, bolder sounds than I’d ever make myself.
I came home last summer in a state of emergency, with a sense of ungroundedness, of floundering. What do I do now? Who am I if I can’t be on stage? Why is my body so reactive? Is this all due to fibromyalgia? Am I possessed? My doctor made an appointment with a neurologist. I’m still waiting, a year later. I went to my naturopath, who, before talking about the seizures, asked me about my financial situation. (Freelance artist. Poor.) She suggested disability support. “Stress makes everything worse.” Asked if my parents could help me. I broke down and sobbed. She offered to treat me for free by email for a while, but I felt ashamed, and her pity unfurled my courage. I haven’t been back since, although it was the naturopath who made the connection between the worsening of my seizures and the medication the doctor had me on. My doctor was astounded at the correlation but admitted it made sense, and we started the dark, autumn-long weaning process where everything got worse and I regularly had the thought that I should die, so as not to be a burden on the world any more.
Throughout that time, I filled in forms, made lists of symptoms, and wrote paragraphs about my pain, my daily routines, why I could no longer maintain employment. As a self-employed, freelance artist working in several disciplines, it took a few months to prove my income was even valid, according to the government. Paperwork designed to regulate the disregulated and make sense of how dysfunctional you are, in comparison to other lives, other bodies—are you sick enough to be disabled? Or are you just sickly? Doctor must file medical report. She said she’d do it if necessary, but most people with fibromyalgia don’t get disability. I said I know, it took my mom three tries and a lawyer. I need this. I’m over a barrel, as they say. (Why do they say that?) I’m over a barrel and have no choices left. Can only write an hour a day. And writing pays nothing. I pay to write! I used to feed the habit with that fat acting cash. Get a film role every three years, put it in the bank and leak it out slowly while I similarly eke out the paragraphs. (Maybe I can still do film. Small roles? Short shoots. They can always fix me in post. Edit around the spasms and twitches).
It’s been seven months since I sent my claim in, and it’s been denied because they haven’t received my doctor’s report. Seven months later, and it’s still in the to-do pile. She’s paid eighty-five dollars from the federal government for each report. I call Service Canada. I talk to a kind and empathetic individual. She’s never heard of a late doctor’s report being the reason a claim was denied. It simply doesn’t happen. I go to the doctor’s office in tears, with a fresh copy of my paperwork and a plan to threaten a complaint to the College of Doctors and Physicians, if need be. My heart is in my lip, making it twitch, it’s in the front of my throat, and I feel queasy. My doctor is a nice person. She means well. I’m prepared to threaten her reputation, if I have to. I need this done, and I need it now, before my window for appeal runs out. I need this—a meagre-yet-steady income that would let me exist. Can a doctor understand this kind of desperation? I need a trickle, a steady trickle. The doc says I’m next on her list. It’ll take two weeks. I’m crying. She’s sorry. She has two thousand patients and five hundred reports due. She says it’s not her fault and not my fault. It’s their fault for requiring so much paperwork. No word from the neurologist on an appointment yet, but “I don’t think it’s life-threatening, whatever’s going on. Fingers crossed.”
What right to care can I expect? What right to be heard, understood, supported? Today, I’ll write to Service Canada with my letter of appeal, describing how my doctor’s been overloaded, and that’s why she hasn’t sent in her report, which they can expect by the end of this month, she’s promised. I’ve always been the type to believe in promises. Then I’ll cross my fingers, and wait four months for the review of my file. There’ll be another denial, this time on medical grounds. The government health advisor will find my body not yet tragic enough. Then I’ll hire someone to help me, someone who only gets paid if you win. The months will stretch on. I’ll keep auditioning for television, voiceovers—if I could land a decent walk-on, it’d keep me in kale and tahini for a few months. I’ll keep trying for translation jobs online, too, ghostwriting, editing—little gigs I can feasibly do. I’ll write grant applications and hope for something good to happen. I don’t know what, or when, or how. Hope keeps me upright and moving forward, even when my progress is so slow, it seems I’m inert. I’ve been dragging my past behind me, but it’s a new era, now.
A second act.
The stage is full up with actresses, strong, smart and hungry. I sit in the audience and try not to spasm. I do my best not to let my broken heart show—my final, ongoing performance.
I am very sorry you are going through all of this. I hope that your body heals itself. Good times will come again!
Oh Sara, I am so sorry to hear this. I hope all will move quickly and you will be allowed that little trickle of cash to keep you going so you can spend the time you need to heal.
Sara, you are so brave and inspiring to write about your painful journey this openly. Thank you for sharing this. I will continue to hold you in my heart, and hope that things start to look up. ❤️