Author Archives: Set Shuter

About Set Shuter

Set L. Shuter is a writer, filmmaker, and storyteller from Toronto. Since 2012, Set has worked on hundreds of movies, tv shows, and commercials as a digital technician and colourist in both Toronto and Halifax. She's a graduate of The Humber School for Writers and currently enrolled in The University of King's College MFA program in Creative Nonfiction while writing her debut memoir, Hysterical. Her literary work has appeared in Creative NonFiction Magazine and Understorey Magazine. When she isn’t on stage or working, you can find her watching a horror movie in the dark or writing her days away by the ocean in Nova Scotia.

Delivering the Tragic

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It’s January 2020 and I’m on stage at the Burdock Brewery in Toronto. I know the room is packed but it’s so quiet I can hear a pin drop. All I can see are the blinding lights shining into my eyes and my microphone. Fifty strangers are waiting to hear a story about the most harrowing thing that has ever happened to me.

When I open my mouth to begin, a single thought crosses my mind: I hope this is as funny as I think it is….

*

I can’t recall the first time I told a joke. I only remember how exciting it was when the result was laughter. I’d somehow found the power to disrupt my boring elementary school classes with punchlines. From then on, my mouth was unstoppable, producing a constant stream of wit that frazzled my teachers.

But as we all know, funny children (and people) are often hiding behind their humour. On my thirteenth birthday, my father had his first heart attack and the fallout destroyed my family. Instead of rebounding once my father recovered, my parent’s marriage festered and they both turned to alcohol to tolerate their lives. During this time, the only thing I could control was my sense of humour. Rewriting my narrative with a comic spin gave me power. Delivering morbid and self-deprecating jokes about my broken family was the only thing that converted my radiating sadness into consolation.

As an only child, I lived alone in my country home with my parents while they became verbally abusive and neglectful. I turned to my television for comfort, staying up past my bedtime every Saturday night to catch the latest SNL sketches with Molly Shannon, Darrel Hammond, and Tina Fey. I hoped that, one day, I could do what they do. Fantasizing about my future in comedy kept me from succumbing to paralyzing depression as I grieved the ongoing loss of my parents. It didn’t take long for me to be known to my friends and extended family as a funny girl.

At nineteen, I was diagnosed with PTSD but was able to recover after nine months of a treatment called Eye Movement Desensitization and Reprocessing (EMDR). By the time I was twenty-one, I was ready to leave my childhood behind. I’d decided to become a comedian. How does a small-town Canadian girl chase this dream? She goes to university for pre-law because she’s afraid of financial instability, hates pre-law, and abandons her fledgling career for The Second City, the renowned school that has produced the best comedians in North America since 1959.

For two years I devoted myself to improv, stand-up comedy, and sketch-writing classes in Toronto. I had a knack for writing but lacked the charisma of a performer. After three failed auditions for The Second City’s famous Conservatory Program, and thousands of dollars of debt, I gave up my fantasy of becoming a comedy sensation. I was fortunate to fall into a position in the film industry, paying off school while going to shows after work and watching comedians tell jokes similar to the ones I scribbled in my notebook.

I worked as a digital technician on film sets for five years before my life derailed. I was away from home working on the biggest movie of my film career when my body suddenly changed. My hair fell out in clumps, my period disappeared, and I was having episodes of heating and cooling at all hours of the day and night. I was twenty-eight and had unknowingly hit menopause.

My journey to diagnosis was tumultuous. After my symptoms were dismissed by three doctors, my body transformed so drastically in under four months that I was convinced I was dying. By the time I was diagnosed with autoimmune premature ovarian failure, I was having forty-two hot flashes a day and had to stop working because my mind became a barren wasteland where my memories evaporated before I could grasp them. I was unable to remember who I spoke with on the phone five minutes before—which was not conducive to working in the high-pressure world of filmmaking.

Being symptomatic and undiagnosed is the ultimate stress position because there are far too many unknowns for a brain to process. A chronically ill patient will likely never know everything about the origins of their symptoms and having no choice but to navigate your disrupted life is a waking nightmare. The only thing that kept me holding on each day was landing jokes about my situation, while everything else that ever mattered to me—my career, my partner, my dreams—slipped away. When lupus, a brain tumor, MS, and ovarian cancer—as well as early menopause—were on the table as possible ailments, I made jokes to relieve my growing fear: “Of course I’m in menopause! Haven’t you heard that 28 is the new 51?” The more tension I released with comedy the more I felt connected to myself.

Photo of performance artist Debbie YJ Lin, showing a woman speaking into a microphone and a hand on the sound controls.

Horizontal Sowing (still from performance) by Debbie Y.J. Lin.
Photo by Yoon KwanHee

When my mind spiralled into thinking my life was coming to an end, I promised myself that, if I survived, I’d tell my story to everyone who would listen so that symptomatic women who are dismissed by doctors would be validated. I believed the best way to do this was by unifying an audience with laughter.

But how could I make my tragic twist of fate funny?

I have never believed in destiny, but six months after my diagnosis, I got a call from The Second City Training Centre. I had an unused class credit I’d completely forgotten about. I’d taken most of the classes except storytelling; their website said I would learn to tell my true stories in an engaging and performative way. I was anxious at the thought of going back to something I’d failed but my hormone replacement therapy was finally kicking in—see you in hell, hot flashes!—and I felt comfortable leaving my couch to return to the world.

It turned out that this art form was, for me, the perfect intersection of writing, improvisation, and stand-up comedy. From the first day of classes, when I told a story about my humiliating rollercoaster of an eighteenth birthday party, I knew this was something I not only could do but had to do for the rest of my life. My classmates said they loved my energy and my comedic delivery of the tragic. No one aside from close friends and family had ever believed in me this way before.

Once the course ended, it took a few months of telling five-minute stories at Toronto open mics for me to feel ready to tell my menopause story. I penned a sixty-minute, one-woman show about my experience with misdiagnosis and menopause and called it Hysterical Woman! A popular Toronto storytelling show accepted an excerpt and booked me for their first show of the 2020 season.

*

So there I was, January 2020, at the Burdock Brewery with stage lights in my eyes. I’d rehearsed my fifteen-minute piece for two weeks straight. When I’m finally called on stage, I float past the crowd and up the steps, palms sweating, heart palpitating. I get my first laugh in the first thirty seconds. The adrenaline rush invigorates me. The laughs keep coming, charging me with electricity which further fuels my delivery.

I don’t remember most of this performance because my mind was screaming, “I can’t believe this is happening!” When I wrapped up and stepped off stage to applause, two producers I’d never met booked me for paid shows on the spot. Then a swarm of people approached me to tell me their own stories of doctors and misdiagnosis.

For the next two nights, I couldn’t sleep. I was high on adrenaline. This was more exciting and more healing than I could have imagined.

Then the pandemic hit. Soon after, all my booked performances were postponed indefinitely. Most storytelling shows moved online and although this shift expanded my audience from Toronto to the whole world, telling stories into my laptop camera does not have the exchange of energy I thrive on as a storyteller. I hope 2022 will allow me to return to the stage. In the meantime, laughter continues to heal me more fully than any doctors or any therapy ever could.

Listen to Set Shuter read “Delivering the Tragic.”

Hydroxychloroquine?

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My COVID-19 adventure began on March 13th around 3:30 in the afternoon. I was standing in a grocery store loading a weekend’s worth of groceries onto a conveyor belt. Then there was a “ding” from the pocket of a woman ahead of me.

As she whipped out her phone and began reading, more dings came one after the other, then in unison, from people all over this grocery store. Looking around, everyone had their faces glued to a device. Then came the “oh nos” and the “oh my gods” and the “what am I going to dos?” from an entire store full of parents who just found out March break will last at least three weeks because of the coronavirus.

People panicked. Hordes of parents rushed to checkout lines and paid for as much as they could carry. Just when I reached the front of the line, I realized I forgot to pick up toilet paper. I was desperate, down to the last few squares glued to the roll.

I darted for the toilet paper aisle only to find an empty shelf with one dented box of Kleenex left behind. I had never seen such a sight. I grabbed the box and got out of there as fast as I could.

It’s been weeks and I have yet to find any toilet paper. While this may be considered life or death to some people, substitutions can be made that get the job done. But this isn’t the case for every commodity people are panic-buying. Now there are drug shortages that are taking life-saving medication from chronically ill patients’ hands.

With the existence of a brand new virus plaguing humanity, our world is changing in unprecedented ways that will continue to unravel in the coming months. As our governments scramble to repair the economy and scientists work on an effective and readily available vaccine, the general population now finds themselves living their lives much like chronically ill patients do: on a day by day basis.

Every morning, I begin my day by washing down two pills with a glass of strawberry kefir. This has been my routine for almost two years, ever since I was diagnosed with rheumatoid arthritis (RA) when I was 28 years old. The pills are hydroxychloroquine, a malaria drug that has anti-inflammatory qualities. It is commonly used to treat RA and lupus, both progressive and often debilitating autoimmune diseases. You may have read about hydroxychloroquine in the news in the past weeks now that there is a global shortage of the drug.

Living with RA has forced me to make adjustments to my work and lifestyle that most people would resent. I was once a stressed-out workaholic who clocked long hours on film sets for months at a time because I liked the money and my body could handle it. Now, stress triggers my illness and I can only work or travel when I’m in remission.

My pills work in 24-hour cycles, so I’ve come to view my life in this way, too. There are no guarantees I’ll be physically able to do what I might want to tomorrow. It can be overwhelming at times, but this is the reality of life with RA.

I continue to grieve the loss of my previous life without chronic illness, but I’ve found contentment in my new daily routine. I do my best not to worry about a future with unpredictable bouts of immobility and uncontrollable physical changes. In moments when I fall prey to my own fears, my rheumatologist assures me that I will live a relatively normal and deformity-free life, but only if I take my medication every day. Medication that due to panic-buying has become unavailable.

Because of COVID-19, I’ve isolated myself in my home since March 13th and plan to continue for the foreseeable future. I thought this would keep me safe, but due to false information perpetuated by world leaders drunk on hubris, doctors around the world are writing an increasing number of prescriptions for hydroxychloroquine, resulting in a global drug shortage.

Their reasoning is based on small studies of COVID-19 that do not conclude hydroxychloroquine will “cure” the virus, but suggest it may mitigate it in ways researchers cannot speak to because further testing is needed. And yet, healthy people, including rightfully anxious healthcare providers, have decided that in the absence of answers to abate their fears of COVID-19, they will participate in panic-buying of yet another commodity, dangerously, a medication with no easy substitutions such as buying a box of Kleenex instead of toilet paper.

There is no denying this shortage will negatively impact patients all over the world who depend on this drug to function. My worries are now amplified by the fact that not only could I die from this new virus, but the biting question: what will happen when I run out of hydroxychloroquine? What will I do when my pharmacist tells me I can’t have another three-month supply of this drug I depend on?

Patients who rely on this medication should never be forced to answer this terrifying question. Yet, those who hoard the supply based on fear and conjecture make it impossible for us not to ponder the unthinkable possibility.

By creating a drug shortage, hoarders are directly responsible for the pain and suffering of countless lupus and RA patients, who through no fault of their own have a disease they must battle over the course of their lives with medication.

While many of us consider hydroxychloroquine a lifesaver, the consequence of being an unmedicated RA or lupus patient is case dependent and (usually) not death. However, patients can expect their symptoms to creep back into their lives: unrelenting pain and debilitating inflammation that fractures our bones, erodes our joints, and attacks our organs, resulting in permanent damage to our bodies and added pressure to our overburdened health care systems.

Those who created this global drug shortage may never contract COVID-19. Without this medication, RA and lupus sufferers are guaranteed to get sick. Some of us will flare up, become incapacitated. Inflammation will rob us of our energy and we will be too tired to do anything but stay in bed. Too stiff to pick up a grocery bag, or use a can opener, or play with our children.

Panic-buying is depriving those of us who need this medication of our quality of life. Everyone has the right to live in this world, even those of us who are ill or old. There are countless uplifting stories about people stepping up in heroic ways to help others during this crisis. Is it too much to ask that we practice self-control so the quality of life of chronically ill patients isn’t decimated during this pandemic?

Given my history with RA, my symptoms will kick in about five days after I stop taking hydroxychloroquine. All I can do is take life day by day, and hope the medication will be there when the time comes to refill my prescription.

I Have Rheumatoid Arthritis. What Happens When I Run Out of Hydroxychloroquine?

By .

My COVID-19 adventure began on March 13th around 3:30 in the afternoon. I was standing in a grocery store loading a weekend’s worth of groceries onto a conveyor belt. Then there was a “ding” from the pocket of a woman ahead of me.

As she whipped out her phone and began reading, more dings came one after the other, then in unison, from people all over this grocery store. Looking around, everyone had their faces glued to a device. Then came the “oh nos” and the “oh my gods” and the “what am I going to dos?” from an entire store full of parents who just found out March break will last at least three weeks because of the coronavirus.

Continue Reading I Have Rheumatoid Arthritis. What Happens When I Run Out of Hydroxychloroquine?