How were you diagnosed with NMOSD, an autoimmune disorder that affects the central nervous system?
In 2020, I was running when unexplained blurry vision came on; I'd never experienced that. I saw an optometrist who had some ideas, and after a while, those ideas didn't explain things, so I was referred to a neuro-ophthalmologist and then to a fantastic neurologist, Kristen Krysko, MD, MAS [of St. Michael's Hospital and the University of Toronto].
When did you develop an interest in art?
Since I was a kid, I've been drawing. I always felt that art was a quiet, safe place to express myself. I had a great high school art teacher, Susy Baranszky-Job, who always encouraged me to use a sketchbook as a visual journal to process emotions, document my progress, and explore ideas.
In creating art, how have you overcome the physical challenges of NMOSD, which in some people can include limb weakness, loss of sensation, and spasms?
I adapt what I normally do as my body and abilities change. I'll choose certain projects or mediums that work with my new abilities. For example, I often created large-scale painted portraits with a decent amount of detail. Now, I work on a smaller scale or a laptop, which can be less physically demanding because I can sit at a table. I try to be nicer to myself, too, and accept that “This is my body now,” and so “This is my art now.”
You incorporate your MRI scans in your work. Why is that important?
The detailed MRI scans represent a version of my body seen through the eyes of a machine, or maybe a doctor. I wanted to remix those images, pulled from my medical records and enlarged digitally. I'm proud because the project reclaims a sense of creativity and personality when I often feel like the poked and prodded patient. What I'm trying to do is reframe how I think of myself and my body so it's not through just a medical lens, but also an artistic lens—to say, “I'm a medical patient, but I'm also an artist and a human being who can express myself.” Disability is an important part of my life, but it's not the only part of who I am.
Tell us more about how you crowdsourced poetry into your artwork.
I've thought about how others will connect with my experience of disability—for example, how others have gone through similar experiences. I posted a line of poetry on social media and asked for the next line of the poem. One prompt was, “I rise from the ashes of circumstance…” People might not get exactly what I'm going through, but other people have had hard experiences, too, and they can connect and empathize.
What do you hope people take away from your artwork?
First is a kind of humanization of disability or seeing that disabled people aren't defined just by their medical diagnosis. Disabled people are creative people with hopes, goals, and stories to tell. I also hope it empowers people who might be going through something difficult to say, “Maybe I can do stuff like that, too”—to make artistic lemonade from lemons.
What projects are you working on now?
For my “made-up memoir” project, I asked the public for titles of their imaginary memoirs and designed book covers using those titles. I use graphic design, which is less taxing on my body because it's mostly digital. A tremor might smear paint, but on the laptop, I can hit “undo.” I also have an art project on display at the Senate of Canada.
How do you feel now?
I feel quite lucky most days because I have a great support system. My wife, Rebecca, is amazing. That's not to say there aren't bad days or it hasn't been hard to navigate this new life. I just try to keep in perspective how lucky I am.
