As a kid, I was in and out of the hospital so often that the staff became family. I also missed a lot of school. Despite my health, my elementary-school years were great.
I had a lot of friends. I was in the regular curriculum. I always had amazing grades, and I wasn’t bullied in the school. I ran into people outside of school that bullied me, picked on me or stared at me, but in school, I was like everyone else.
Being a young kid, I didn’t understand why people would stare at me, point at me, call me names or tell my mom that if she took all her prenatal vitamins, I wouldn’t be like this. It made no sense to me why people saw me differently, and I certainly didn’t stand up for myself.
It upset me a few times when people would point, stare or even laugh at me, but I got used to it, and my mom taught me to not let it get to me too much, because those people didn’t understand. This evolved into her teaching me to stand up for myself as I got older.
I finished elementary with my friends, and we were all excited to go into junior high, until I found out I had to go to a different school. Stanley Knowles wouldn’t take me, because I’m in a wheelchair – and they already had one “wheelchair student” – even though they were my catchment-area school. It was a total cop-out, because schools in Winnipeg are supposed to have accommodations for all students.
Ultimately, my parents went to the human rights board of the Winnipeg School Division, and (based on what I heard, because I was only 12 at the time) the school came up with several excuses as to why I couldn’t go there. In the end of that fight for my rights, I was sent to Grant Park High School and completely separated from the friends I grew up with.
I started junior high in a completely different school as “the disabled kid,” and I realized just how different I was. The teacher assistants that get paired up with the students who are disabled started talking to me like I was intellectually challenged. I would go to class, but no one talked to me, because they already formed their cliques and didn’t know how to react to me.
It was then that I realized that I didn’t fit in with the non-disabled students, because I was disabled, but I also didn’t fit in with the students that were disabled, because most were intellectually challenged, and I wasn’t.
In junior high, another challenge was thrown my way – like junior high isn’t enough of a challenge as is – leukemia and chemotherapy. And to top that off, I was the first in the world with SMA2 and leukemia, so no one believed I’d survive – not my nurses that I grew up with, not my doctors and not even my family.
My friends from elementary school stopped talking to me after they found out, too. I didn’t know why, but as an adult, I can say that people don’t always know how to react when they hear bad news, and sometimes they don’t react well.
So there I was, trying to believe I could fight this disease on top of my SMA2 and win when everyone else doubted my ability, and I was doing it alone at 13 years old. Yes, my family was around, but they were terrified, especially because my dad asked my oncologist, Dr. Sara Israels, if she could treat me successfully. Her answer was “I don’t know, but I’ll try.” We started chemotherapy right away.
When I went back to school, now I wasn’t just someone who was physically disabled. I was a cancer patient, too, and that was ammo for the students at my junior high to tease me about. Suddenly, people were saying that I was a boy trying to be a girl, rumours that I was on my deathbed circulated, and I was told to “go die” numerous times by the football team.
I had no friends, and I was told by a teacher that I would never graduate or amount to anything due to my disability – all while battling cancer and on heavy chemo.
Due to the cancer treatment, my SMA2 progressed and sent me into respiratory failure at 15 years old. I had a tracheostomy done and was placed on a ventilator almost immediately. The doctors let me have my 16th birthday before doing the surgery, which resulted in a 14-month hospital admission after surgery. When I was released, and it was time to go back to school, I was 17, and I decided that I was transferring schools.
I started at Sisler High School that year, and it was a much better experience. I also started doing PowerPoint presentations in classes at Sisler about my life, my disability and my experience with bullying.
I graduated from Sisler High with honours and started university. Now, I go into schools around the city to do my presentations, because it’s one of my goals to educate students about what it means to be disabled and what bullying can do to someone, such as causing depression, suicidal thoughts or lowering that person’s self-worth.
I can honestly say that because of things I’ve seen in the hospital, traumatic events I’ve gone through, losing physical abilities from the SMA2, the loss of multiple friends from other illnesses combined with the bullying, I have mental health problems. I deal with depression, anxiety and PTSD, and, as a young adult, I attempted suicide. And it took me years to overcome my issues and accept everything, but it is possible. My life hasn’t been ideal and it still isn’t, but it’s a good life.
Crystal Rondeau is a rock music and tattoo-loving young woman who lives with a physical disability and chronic illness. Her main goal in life is to break barriers and destroy the stigmas that come with being disabled and ill. She does this by speaking in schools, volunteering and being very open and uncensored about her life. Read more about her experience with SMA2 at uniter.ca/view/crystal-clear-09.
Published in Volume 72, Number 13 of The Uniter (January 11, 2018)