'I did not recognize the person in the mirror.' Host of The Great Canadian Baking Show on life with alopecia
Comedian Alan Shane Lewis says there is power in being your authentic self on national television.
I was 17, at my sister's apartment, when I discovered my first bald spot. She noticed it first. "What is that?" she yelled. I ran to the bathroom and rubbed my hand over an extremely smooth spot at the base of my neck. A trip to the doctor revealed that it was alopecia, something that I'd never heard of.
Roughly two per cent of people are or have been affected by alopecia areata. It's an autoimmune disease where your immune system confuses healthy cells for invaders, attacking hair follicles which lead to patchy, bald spots, usually located on the head. An even smaller percentage of people — roughly 0.03 per cent — have alopecia universalis, which is what I have.
Losing the hair on my head was one thing, but losing my eyebrows really hit me hard. There was no one around who looked like me and I could feel people staring. I started to wear my trademark brimmed hats low to hide my face.
I grew up in a (very white) Toronto suburb of Thornhill where my teachers and fellow students never gave me a second to forget that I was Black. And as I lost more and more hair, I felt a disconnection in my soul. Black hair has deep cultural roots and is much more than just a couple of fun styles and braid-ups you can get on your trip to Jamaica. I lost my bi-weekly trip to the barbershop and felt cast out from white society as well as Black society for a moment.
One fateful day, I started treatment at Sunnybrook Health Sciences Centre. Each week, they would rub a liquid solution on my face and neck, increasing its potency until I got a reaction. After a few weeks, my eyebrows returned and I even grew some facial hair! The level of care and happiness I soon felt meant the world to me.
...as I lost more and more hair, I felt a disconnection in my soul. Black hair has deep cultural roots and is much more than just a couple of fun styles and braid-ups you can get on your trip to Jamaica.
When I met Chi Nguyễn, one of the contestants on Season 6 of The Great Canadian Baking Show, I instantly recognized those fresh alopecia patches. It was new for them and I couldn't imagine being on a national stage while you slowly lost the image of yourself that you hold in your head. They described feeling "devastated" because their hair was a big part of their life.
"I worried about what people would think when they looked at me, even though I know that I can't control other people's reactions to me and that ultimately those opinions shouldn't matter," Chi told me.
"Logically, I knew this, but it's hard to reconcile the head and the heart. I felt very self-conscious about this because participating in the show meant there was nowhere I could hide this diagnosis."
I share these sentiments. I don't care that people know I'm bald because it doesn't matter. But that doesn't stop me from being self-conscious. And as host for a national baking show, there aren't any places to hide.
Luckily, Chi has a great support system of friends who cared and loved them as they made the decision to shave their head (which looks badass, btw) and reclaim their image. Not only were they the first contestant with early stages of alopecia areata, but they were also the show's first non-binary contestant. They do not shy away from who they are. "I do hope that being my authentic self on the show can make other people feel seen and represented."
Fundamentally, this is extremely important to me. Representation. Not just diversity for diversity's sake but full-on inclusion. Not just Black pain, but Black joys. Small and large.
I worked hard to figure out my identity. And if I can make it through this, then what choice do I have but to share my story in hopes that it resonates with someone in a similar situation, so they don't feel as alone as I once did.