Dara Gordon is a health policy researcher (looking at the nexus between mental health, policy and integrated care) and a writer living in Toronto. On her Instagram, she shares poetry from the journals that she kept after the sudden death of her mom. Her writing has been published in @invisibilitieszine.

She will be speaking this month at Unruly Bodies II: A Night of Storytelling.

SDTC: Do you consider your body “unruly”? Why or why not?

I used to. My body and I were at odds for a long time, following my diagnosis of ulcerative colitis in 2008. It disobeyed me. I wanted it to just “work” like everyone else’s, and it wouldn’t. I bled internally, I had flares of pain that kept me in bed, I needed more sleep than anyone I knew, and I couldn’t eat more things than I could. Not very fun for an eighteen-year-old entering university, the least of which was that I couldn’t drink beer. I didn’t want this body. I longed for another one. An unruly body is one that you have but you do not want, unless you can learn to want it.

Now my body is my home. I’ve spent the last five years trying to unlearn the relationship I had with it previously, the one where I didn’t want it. Through naturopathy (though other mental health practitioners could play this role), I learned about the link between mental health and irritable bowel disease (IBD), and I realized the magnitude of my brain telling my body it didn’t want it for all those years. Because I am both. And both are allowed to be unruly at times as long as they always want each other.

How has your perception of your body changed in the past few years?

I’m finally starting to view myself as someone who is healthy. For the first six years of having colitis, I thought of myself as someone who was “sick” and would be forever. When I met my naturopath, she would tell me that I wasn’t unhealthy but I was just working on becoming an even healthier version of myself. I loved this reframing of my mindset from one of scarcity to one of abundance. Now when I begin to think, “I’m sick and stuck like this forever,” I bring myself back to that lesson. I know that if I cause a small flare up, I haven’t ruined everything I’ve worked towards, and I can start again.

Despite colitis being an “invisible illness,” my body has always broadcasted the state of my health outwardly. When I was really sick, I was sallow-looking and sometimes I gained weight and looked puffy and other times I lost weight because I was malnourished. Recently, through lots of healing, I’ve become a leaner version of myself again.

Throughout these fluctuations, I’ve reflected on society’s dangerous assertion that weight loss and thinness are requisites for better health. Navigating body-image issues is challenging for anyone, but especially for women and non-binary people, and I would argue that for sick, disabled or mad women and non-binary people, these issues are ten-fold since our bodies are often in states that we have no control over.

Is it possible to separate your sense of self from your body? Or do you see them as intertwined?

I think I’ve always had a pretty strong sense of self (as a Capricorn and a Gryffindor). After I was diagnosed, I spent a couple of years on different treatments prescribed by specialists who didn’t know my body and, despite that most of these interventions didn’t work for me, I felt that the doctors were better positioned to help me get better than I was. While I still felt like I had a strong sense of self, I was completely disconnected from my body.

Now I see my sense of self and my body as being wholly intertwined because I’ve learned to see the parallels between my physical, mental, social and environmental health. I’ve spent time observing and listening to inward pangs and subtle shifts that I’ve learned to interpret in order to properly take care of my body, and therefore myself. For example, when I start to get hungry but don’t feel 100%, I ask my body what it wants to eat and whatever comes up for me (usually some variation of sweet potato and something) is what I eat. My body has its own wisdom and I’m finally listening to it.

Why is it important for you to share your story at this event? What are your feelings going into this event?

I think my experience of living with a chronic illness presents an unconventional narrative of both illness and healing. I know that what worked for me might not work for everyone, but maybe my story can offer hope to others living with autoimmune diseases and even encourage them to explore other ways of thinking about and living in their own bodies.

My story also discusses my mom’s experience of living with a chronic illness (she had MS) and reflects on how society’s rearing of women and non-binary people as caretakers led her to neglect her own health in pursuit of taking care of everyone else. She passed away before I started healing my body, but my story and hers are inextricably linked because I think her passing led me to begin that process.

I’m looking forward to this event, but I’m definitely nervous to read! I did my first reading just a few months ago at the @invisibilitieszine launch, so I’m still getting used to thinking of myself as someone who writes things that other people want to read and/or listen to. It’s wild!

Who or what has shaped your view of your body the most?

Recently I’ve been thinking a lot about time and how, for people with chronic illnesses, disabilities or madness, time is much more elusive. There are, for us, what I think of as “hidden hours,” wherein we still have to do all of the things that other humans do but also find time to take care of our illness or disability. This includes finding time for multiple doctor and specialist appointments, picking up prescriptions, time spent trying to afford those prescriptions, time for taking/undergoing treatments both in the home or away from home, grocery shopping and preparing food, time for flare ups/pain/relapses, and time for more sleep than most people. And if we’re spending more time doing these things, what are we not getting the chance to do?

Unruly Bodies II is coming up on January 26 at Tranzac Club (292 Brunswick Ave). Grab your tickets here.