I’ve gotten to a point where the life story I tell sounds like the blurb of a light-hearted novel with a dark undertone. It goes something like “Preet is the only Sikh kid in a small town on the east coast of Canada. He also lives with a rare form of eczema that requires a lot of medication and lands him in the hospital a few times a year. And he’s gay. Life is complicated but all he wants is to make it to the Janet Jackson concert in Toronto.”
The cover would be brightly coloured with clean design but the novel would involve problematic substance use, suicide attempts, a dysfunctional family story, a lot of anger, and a lot of anxiety. Let’s not forget the assortment of terrible therapists.
When I was around three months old, I developed a rash on my neck that turned out to be a serious, rare form of eczema caused by an immunodeficiency disease. My case of eczema was so rare that the doctors used me as an experiment.
Doctors kept me on prednisone for over a decade even though they knew it would affect my growth. It was the only way to keep things under control while they experimented with different treatments and medications. I used to wake up in the hospital surrounded by white doctors wearing white coats staring down at me as they discussed my body. My childhood medical files referred to me as a “challenging and complicated” case. As an adult, I found a picture of my twelve year-old arm in a medical journal.
My parents used to take me to quacks and mystics who would promise to cure my illness so that I would grow up tall and strong. Some of their sales tactics involved before and after pictures to prove how their expensive herbal mixture would make me “normal.” A few times my family forced me to sit in front of a fire while a bearded old man chanted prayers to cast out the demons and remove the curse that had been placed on me.
You can’t get comfortable in a body that is seen as an object either to be studied or repaired.
Growing up, the relationship I had with my body was distant because I had to detach to survive. I would stare at the ceiling and count the tiles while the doctors talked about me like I wasn’t there. I would resist but ultimately go along with my parents’ wishes even though it meant giving away control. Though it’s been over a decade since my skin cleared up (because of a new medication), too often I am reminded that I’m still not healed and I’ll spend the rest of my life navigating my intersections.
As a result of these experiences, I’m not always capable of being present in a moment. I still think of a time when I slept with this white guy, and as we lay there naked he told me he loved my brown skin and that it was so soft. A simple drunken comment broke me into my composite pieces. I lay there in awe that my life had become such that I was having close physical contact with an attractive white man. I was living a life that the world had told me I would never be able to have because I was too defective. Or was I just being reduced to my skin colour? My skin was healed, but I was broken open in a whole new way.
I am hyper-aware of and simultaneously oblivious to my own body. I try to be cognizant of my tendency to slouch but I don’t always remember to eat properly. I can’t walk by a window or mirror without checking myself out, but I don’t realize that my legs hurt because my shoes don’t fit me properly. I’m not always sure when I’m actually sick and I’m not entirely sure how to keep myself well. So much energy was put into trying to cure me that nothing was left for simply showing me how to take care of myself.
People say you can let go of the past, but that’s not possible when it’s written on your body. A few months ago, a friend sent a link and I saw my name and picture in a story about the dermatological needs of patients with “darker complexions.” The photo had been taken about five years ago when I was volunteering with a dermatology patient group and working a job at an HIV non-profit as the “men’s ethnocultural coordinator.” The interview was about the dermatology group but the photo was taken in my office with safer sex posters visible in the background. The editor probably needed a photo of a brown guy with a skin condition and I turned up in their archive search. It was like finding my arm in a medical journal again, only with gay subtext this time.
I doubt I’ll ever be comfortable in my body. The skin issues might decrease, but then other issues will increase with age. I do know that trying to destroy my body with drugs and alcohol out of anger doesn’t accomplish anything, and that physical activity is a much more effective way of dealing with my anger. Sometimes I get lost and have to recalibrate, but I don’t beat myself up over it as much. I’m still learning that it’s perfectly normal not to be normal.
My story is still being written. I will probably always be trying to make sense of things, and I'm in the process of learning to love the skin I'm in. Life remains complicated. But, for the record, I made it to that Janet Jackson concert.
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