Don’t Judge a Book by its Cover
How I write through my chronic pain
Easy reading
When I was 13, I was diagnosed with Myofascial Pain Syndrome. I’d long been struggling with ganglions in my wrists, feeble ankles, and back pain. Not the average middle-school stressors.
My doctor was surprised. Myofascial pain isn’t commonly identified in pubescent girls. In my case, years of competitive gymnastics brought symptoms to the surface prematurely. The ‘bend it ‘til it breaks’ mentality of the sport had, in fact, left me broken.
By way of comparison, my doctor mentioned that he had another patient in her 30s with the same syndrome. “She’s mostly bedridden, and Wii Fit is her main form of exercise.”
In an instant, 13 going on 30 entirely changed meaning. I was forced to consider my longevity. I quit gymnastics and spent the extra time bouncing between acupuncture and massage. A physiotherapist taught me stretches that I fit between math and history homework.
I braced myself for a battle against my own body. At age 27, I’m not as certain that I can outrun my condition forever.
The crux is that myofascial pain intensifies with repeated movement. Two years of working from home have caused extensive damage to my neck and shoulders. Staying up late now leaves me achy and stiff. The wrong shoes inflame the balls of my feet for days. How can you live without repeating movements? Just breathing is replicating the same motion, over and over again.
On the outside, I am physically fit and young. My ailments betray my age.
As much as we like to think looks don’t matter, we know they do. Even when my symptoms are overwhelming, I avoid the blue seats on the subway and power through. I don’t want to justify being there. I don’t want strangers thinking that I’m taking a spot from someone who truly needs it.
I don’t want to admit that I need accommodation.
Whenever someone points out a typo in my blog
Jagged Little Pill
Myofascial Pain Syndrome is frequently confused with Fibromyalgia because it can affect the whole body. The pain radiates from trigger points in soft tissue, like fascia, which can become inflamed and tighten. Those spots are worsened by any number of innocuous things: diet, stress, sleep, injury.
The trigger points then cause referred pain, meaning paths of tenderness migrate across my body. Sometimes my back becomes so tight that pain travels into my ribs. My whole body is covered in referred pain trails. It’s like a poisonous slug is attacking my muscular system.
The syndrome is diagnosed the same way it’s treated: poking tender areas and watching the reaction. For me, a finger poke can cause anything from muscle twitches, to lingering pain, to small squeaks of discomfort. Bringing dry needles into the mix, however, has given me the most relief so far.
Most treatment plans for pain are based on guesswork. When discomfort is in every part of your body, every part of your life falls under scrutiny. Is it the chair I’m sitting on, my hormones, or yesterday’s workout that’s hurting my back? The answer is usually a bit of everything.
Part of the problem is that women’s health is largely understudied. Chronic pain affects more women than men and also isn’t life-threatening. In the hierarchy of research, it falls to the wayside. Besides cancer, only 1% of health care research goes to women’s conditions. Moreover, women experiencing chronic pain often aren’t believed by professionals.
In many ways, I’m grateful for my early diagnosis. I was armed as a teenager with confidence in my condition. The label comes with power. But, as both Uncle Ben and Ru Paul remind us, “with great power comes great responsibility.”
Knowing the name for my condition didn’t make the reality any easier to swallow. When he diagnosed the chronic pain, my doctor told me there was a good chance I’d get depressed. He put me on anti-depressants to help with inflammation, but also as a pre-emptive measure.
In retrospect, he was probably kidding. As a 13-year-old, I missed the punchline.
Either way, the pills made me spacey, and I stopped taking them shortly after I started. I figured living in my body was better than being lost in my head. I guess I’d rather feel pain than nothing at all.
After that, the uncertainty around treatment was overwhelming. For years I’ve avoided researching my disorder. Any time I did, I found forums of chronic pain lamenting their conditions. Many were bed-ridden, depressed, and suicidal. It was a dark place, and I opted to manage on my own.
In chronic conditions, you aren’t supposed to compare the severity of experience. Pain is subjective, and nothing good comes from qualifying suffering. When I see accounts of what other people go through, however, it’s hard not to think that I got off easy. I constantly question the validity of my experience and gaslight myself into thinking it’s not that bad.
From the vantage point of my own body, it’s impossible to see clearly. Places that have ached for years have become desensitized. The cracking of my neck is an hourly ritual. I’m too close to gauge how intense the pain is, and I so desperately want to be fair in my assessment.
In doctor’s offices, I’ve been asked to rate my pain on a scale of 1-10. The problem is that there’s no objective way to know what number my baseline is. Maybe today is a 7, but maybe my resting place is your 5. In the same way, that men will never understand the agony of period cramps, no one can feel what someone else’s pain metrics are.
No one can be inside your body, and I never get to see what it's like in someone else's.
To be safe, I downplay my answers. I don’t want to cause unnecessary concern for something that isn’t fixable. A joint and a heating pad are medicine enough, and I’ve never been good at asking for help.
Sure, the trigger points make life uncomfortable, but the referred pain often brushes a deeper hurt: the fear of being a burden.
Live footage of my Sunday mornings.
Fibro-Nostalgia
Growing up as an only child, I spent a lot of time living in books. Reading allowed me to be independent, and I dreamed of writing my own stories.
During the pandemic, I carved out time in my routine to write. Now every morning I wake up, throw a few words on the page, and kick off my day. That quiet moment where I’m alone with the keyboard is nothing short of tranquil.
I never think about my body when I’m writing.
I've always had admiration for children's books. The stories that taught me to love stories are forever favourites. In 2020 I started writing and illustrating a picture book about a lemming that couldn’t keep up with the others. The baked-in irony of a lemming forced on her own was intriguing, but over time it became a bigger story about the importance of moving at your own pace.
I wrote a story about advocating for needs when I completely avoid asking for help in my own life.
Interestingly, a recent study has found that nostalgia - triggered by a writing task – decreases our perception of pain. The theory is that we refocus on good feelings that increase our resilience and pain tolerance. We allow ourselves to daydream instead of feel.
In using my pain as inspiration, I both eased my discomfort and taught myself a life lesson. Talk about art as medicine…
Two years later, that book was published. My author copies of “Lorelei” showed up on Friday, and the box felt like it was carrying the weight of my entire pain journey. This is a huge milestone as a writer, and a step in owning the realities of my condition. I was now a legitimate author with a point of view on my chronic pain. Visions of signings, book readings, and glowing reviews circled my head. I finally felt validated both as a writer and as someone living with a chronic condition.
When I picked up the first copy, my heart sank.
In front of me was a children’s book. The same words and drawings I’ve seen for two years stared back at me. I saw sentences I wanted to change; images I wish I’d done differently. The whole thing was small and flimsy.
All the flaws didn’t go away with a new binding.
Looking down at my work, I had to acknowledge that maybe a new body wouldn’t help either. The contents will always be me.
When people ask me about old articles.
Turning the Page
In the heat of the moment, I had an outburst. I sent an email to my publisher that I regret. I turned into a diva, demanding thicker pages with a higher gloss. I thought the problem had to be their fault. A different binding surely would make me feel more confident in what I had produced.
I took my husband on a field trip to the local bookstore only to recognize the same style of pages replicated on the children's shelves. The publisher did their job, and I was freaking out over nothing.
This major accomplishment was being tainted by my own insecurities. Like my body, I am too close to this book to know if it’s any good. I expected the most beautiful, obviously important work of art to come out of that box. All I see is myself.
At that moment, I didn’t feel like enough.
In chronic pain, we don’t compare, and we shouldn’t in art either. I might not be the next Dr. Seuss, but that doesn’t make this story any less enjoyable. I might not be bedridden, but my pain is still valid.
Writing, like pain, is something that needs constant management. The first few attempts at treatment or publishing will come with endless lessons learned. Art is never perfect, and it's never done.
“Lorelei” was a labour of love. In creating that book, I became a better writer, a stronger illustrator, and kinder to myself in the process. Sometimes I need to go at a different pace than everyone else, and that's okay. If a lemming can figure it out, so can I.
There's a Buddhist proverb that I often come back to when my body is at its worst:
Pain is inevitable, suffering is optional.
Everybody hurts sometimes, it's how you handle it that matters. Luckily, I have a fearless lemming to guide me
