First of all, I want to thank you for the kind words and the congrats. For those who haven’t read last week’s article, I talked about leaving the Children's Hospital of Eastern Ontario 28 years ago after living there for 19 years. Throughout those 19 years, I moved around several times to different floors. Sometimes, I had roommates, and I had my own room.
I enjoyed sharing a room. Sharing a room with another person meant that I had someone to talk to, get to know, and just be a kid for a little while. We’d often play board games, video games, or chat. Some of you may be surprised at how profound a conversation between two or more kids can get. Then we fought our battles.
Of course, one of the significant downsides was that many of those kids passed away. That was by far the most difficult part of living in a hospital.
Let’s not dwell on that, though. Instead, I will say that I’ve been able to reconnect with several of my friends that I grew up with, thanks to social media. It’s pretty cool to see what they’re doing now and share stories about the years that followed since we parted ways.
During this time of year, I often reflect on how different I was in 1994. I was 19 at the time. I was both terrified and excited to be moving into my own place.
I was terrified because I no longer had the safety net of being in a hospital if something happened to me but excited because I had my own place. I could pretty much do whatever I wanted.
And, I did just that.
For the first few years, I partied pretty hard. I went out almost every night and often came home around 2 or 3 in the morning. On the surface, I was like a typical person who had just left home. The big difference was, and still is, that I’m a person with a disability and that I use a portable ventilator.
In 1994, I was the first person in Canada on a ventilator to live on their own. Because of that, there were a lot of eyes on me. There were people in the government waiting to see if this would be a success or a waste of money and resources. Also, there were those with disabilities who were hoping that all would go well, and in turn, they’d also be able to live on their own.
While most were very supportive of me, I also had my fair share of naysayers, including some people with disabilities. Many of them were living with family or in a group home and were upset that I was being allowed to live on my own.
I understand why they’d be upset and perhaps still are. I don’t know what to say that won’t sound cheesy or anything similar.
I will say that I had a good support system through family, friends, and staff, which helped.
When I left CHEO, I had no idea what I was doing, including how to pay bills. My TV or phone got cut off on more than one occasion, and my mom had to lend me money.
But again, was I that different than most at that age? Nah, probably not.
To me, it depends on how you look at it.
I often get told that my story’s inspiring, or I’m an inspiration. I’ve never been entirely comfortable with that. When a person views me as an inspiration, I feel they’re choosing to see me as someone different, often leading to that person treating me differently.
Yes, we are different, but we’re also the same.
All I did was do what felt right to me.
I just wanted to do something that most take for granted. I wanted to live on my own.