How Drawing My Disability Changed My Relationship with It (Exclusive)

When I was a kid, I didn’t want anyone to know I had a disease. It helped that nobody could see it. Decades later, something changed and it started with a drawing — a character named Norm that gave me the confidence to tell the story I’d avoided my whole life. 

In first grade I discovered that I could draw better than anyone in my class. I designed a poster that my teacher entered in a citywide competition. I won a plaque and 200 books for my school’s library. Wasting no time, I mapped out a life plan. To escape the frigid winters of Canada for sunny California and work in the most glorious and respected of all professions: Animation. Little did I know that same year I found my gift, I also found my curse. I was diagnosed with Crohn’s Disease. 

My relationship with my disease began as one of mutual contempt. I was stuck with it, and it was stuck with me. Upon diagnosis, it moved in and made itself at home. Its agenda: ruin my life. My agenda: soldier on, keep it hidden and pray it didn’t derail my dreams. 

Inflammatory bowel disease is like a plumbing problem with no fix. I didn’t want to be the kid with bad plumbing; I wanted to be known for my talent! I worried if people found out, they’d pity me. That my friends would stop hanging out with me. Nobody would date me. Employers wouldn’t hire me. Over the years, I’d only share it when I had to, and with as few people as possible. One perk of having an invisible disease was that I could keep it hidden. But that also meant I was hiding a big part of myself. 

The change was gradual. One toe in the water per decade. There were many bumps in the road along the way but I made it to California, hired out of college by DreamWorks. Now and then, someone would find out about my secret. Nobody ran for the hills. I fell in love with a girl who became my wife. Despite my disease’s meddling, she stood by me through the ups and downs, as have my two amazing kids. I’ve had a good career. I drew snails, waistband warriors, diabolical villains and sidekicks. I told every kind of story except my own. It was time. 

Or so I thought. I failed many more times trying to crack my own story. Was it a memoir? Was it fiction? Was my experience with Crohn’s relatable? Was I even ready to share this part of myself with the world? I typed up and then abandoned dozens of ideas. 

The breakthrough came once I started drawing my disease. An annoying, biker beast blasted out of my bowels onto the page and became the not-so-invisible embodiment of my disease. I called him Norm — as in “I’m the new NORM so get used to it!” With Norm as my target, I could write all the nasty things I wanted to say to Crohn’s Disease. I could make people laugh at him. I could get my revenge!  

Slipping into Norm’s leather jacket forced me to see myself from the “other side.” I stopped making fun of my disease and started trying to understand it. Did it hate me? Did it savor every second of the misery it inflicted? Did it really want me to suffer? Was there any part of my dream it could stomach? Seeing myself from Norm’s POV showed me what I’d been unwilling to admit: like it or not, we’re in this together.

That’s when the world of the story widened. If my illness could be a character, why not others? My mom also has Crohn’s, so her disease became a character. Before long, Norm had a crew — The Invisibles — a rowdy group of personified conditions who blow off steam at a biker bar. Once a month, they push the chairs into a circle and talk about the humans who refuse to acknowledge them. Deep down, they all just want to be seen. 

Riding a wave of excitement, I pitched my idea as an animated film with two central characters: Me & My Hidden Disease. The room went quiet in that way creative rooms do when faced with an idea that runs contrary to every current trend. Despite the scent of futility in the air, I finished my pitch and something unexpected happened. Something beautiful. People started talking. One executive shared about a sister with Crohn’s. Another grew up with Type 1 diabetes. Walls lowered. Tense faces softened. For a few minutes, we weren’t our job titles —  just people sharing the truth about parts of ourselves typically kept behind closed doors. I walked out of that room with my hope for humanity restored! 

It was the most wonderful rejection I’ve ever had, because it showed me the point of this project wasn’t a greenlight — It was connection. I rethought my approach and changed mediums. 

Invisible: The (Sort of) True Story of Me and My Hidden Disease is the book I wish I’d had as a kid. I wrote it with the hope that maybe it can help others avoid spending so much of their lives keeping the most important part of themselves invisible. 

When I was young, I was determined not to let my disease derail my dreams. Now, I think it fueled them. Norm shaped who I am and the choices I’ve made. Some days, he’s the devil hellbent on my ruin. Other times, I can’t help but wonder if he’s my angel watching out for me in his own twisted way. He’s the fire in my belly, the drive to make the most of every minute, my curse as well as my gift.

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Invisible: The (Sort of) True Story of Me and My Hidden Disease is available now, wherever books are sold.