On Being a Sideshow Attraction
I have been writing a monthly blog for Rethink since August of 2020 about being a caregiver for my daughter Adrienne after she was diagnosed with triple positive breast cancer at 27 in March of 2019. Late last year Adrienne asked me if it would be possible to start telling her own story in her voice with me as the ghost writer. Here is the next chapter.
I am acutely aware that young women diagnosed with breast cancer are not the patients most people have in mind when they hear the news that 1 in 8 women will be stricken in their lifetime. Most of the world pictures a mom, or a grandmother, or that eccentric aunt that has always lived on the edge. If you were to put me in a room with fifty other women of mixed ages and someone was tasked with separating us into those most likely to have breast cancer, I’d be like the kid picked last in gym class, except in this case that would be a good thing. The challenge with that is that it can be very hard for someone like me, diagnosed at 27, to feel genuinely validated for my feelings about my experience because most of the time people treat me like I’m a bearded lady or a two-headed calf.
I’m a sideshow attraction.
I’m that thing that makes people tilt their heads sideways trying to make sense of what they are seeing and hearing. I’m the object whispered about in hushed tones. I’m the poor creature looked upon with pitying eyes. I’m the car wreck that you want to look away from but can’t help staring at.
I understand that it’s hard to know what to say or do when you find out someone has cancer. I have struggled myself with finding the right words to say. But I never once looked at my grandmother and said “But you’re too old”. I never once quizzically stared across a waiting or treatment room at another patient. I never once expected that someone else would offer me reassurance that it was really all okay.
And unfortunately I all too often encountered medical professionals in all aspects of my treatment whose first or second comment included some variation on how I was too young to have breast cancer.
There were definitely times during treatment and recovery that I wanted to be seen as just me, not the girl with cancer. But as I am processing the experience I am coming to realize that there were also times that I wished that I would just be seen as a patient with cancer, a generic version of myself that meant that I was treated just like everyone else with cancer. I constantly felt the pressure of being upbeat, of carrying the burden of my generation to make sure my behaviour represented us well. Although they were a magnificent bunch, I even felt the obligation to be cheerful with the oncology nurses because so many of them were my peers and I knew they desperately needed me to be okay. The only person who saw how I actually felt was my mom, and there were times I hid it even from her (hard to do when you’re sharing a one-bedroom apartment!).
When you’re as young as I was when you are diagnosed, especially when there is no genetic mutation to offer a hint at why, it’s hard enough to deal with the shock and despair without being constantly reminded of how much of an outlier you are. Yes, as young women with breast cancer we need particular attention paid to some of our challenges, like the potential loss of fertility due to the limited treatment options and the financial toxicity of having your life interrupted when you’re just starting out. I am in no way suggesting we need to normalize breast cancer in your twenties, to accept that as part of the social fabric. But it’s very hard for your concerns to be taken seriously when your experience feels like it’s part of a traveling circus.
I am woman. I am one of eight. That is all you need to know.
Mother…Grandmother…Librarian…Military Spouse…Caregiver…Family Life Educator…take your pick! Debbie Legault was born in British Columbia, Canada to a former RCAF airman father and a Scottish War Bride mother and has lived in other Canadian provinces, Germany and California. She has been married for 36 years to a Canadian Air Force Veteran and credits him with filling her life with adventure. When Debbie Legault’s children look at family photos they often comment on how many different hairstyles she has had and that pretty much is her story, that her life has taken as many turns and led her down as many paths as her hair has changed! Her latest role is as the author of Mom…It’s Cancer, the story of supporting her 27-year-old daughter, Adrienne, as they experienced breast cancer diagnosis and treatment.
