Dr Kelly Fleming

I have no issues with being disabled. I was born Deaf so I don’t know anything about what it’s like to be hearing.

I had my sports accident two months before my 10th birthday. I remember being active in sports: playing softball, rugby, doing track and field, ice skating and gymnastics. All those events feel like someone else did them. My brain has long separated me from that person, the one who physically did all these things.

I was born with SJIA and Sick Kids Hospital in Toronto was my home away from home as well as the local hospital. I was gradually learning from a young age that kids were dying from SJIA. My parents lived in fear of an expiration date (I stole that phrase from a movie I recently watched called More Beautiful for Having Been Broken).

Doctors were always telling my parents I wouldn’t live part a particular age and yet… Here I am!

I watched kids disappear from clinic days at Sick Kids and it took a bit a time for me to realize they weren’t coming back. SJIA took their lives.

I learnt what type of things could happen to me in the future – heart issues, lung issues, mobility issues, organ damage, and much more. Until these things began to actually happen, they were something that could happen but they were not part of my life.

I had already started having organ damage which is caused from MAS (Macrophage Activation Syndrome) at quite a young age, that has over the years affected most of my organs. Unfortunately this is related to SJIA (although not everyone with SJIA has it), which usually takes a person’s life. I have often been hospitalized because of MAS.

I started having seizures when I was about 12 years old, which put my parents on high alert for TIAs and the possibility of aneurysms. I was actually the first or second kid at Sick Kids to get a CT scan when they got their scanner to check to see if I had an aneurysm.

I’m no longer afraid of what will happen in my life from SJIA. What happens, will happen. It’s out of my control.

I think in regards to disabilities, there is only one thing that I actually do acknowledge as not being a part of my disabled life. It’s a work in progress to accept it. That is losing my sight. I’m legally blind although I have an awesome team at the Low Vision Clinic at the University of Waterloo who have worked with me over the past 7 years. With specially crafted Rx glasses (I gave 3 different pair – long distance, tv and computer), my brain has started to relearn how to identify things that my eyes see. I’m still blind but I can watch tv and see the captioning (most of the time), I can register if someone is walking towards or away from me.

If I want to read, I can use my Kobo ereader without my glasses or my Braille reader, if it’s not on my computer.

So the irony for me is… I’m a Disabled person but right now, my disability is my life vision.

That probably sounds odd to others but for me, that is something my brain can register as something I’ve lost.

Even the changes over the years living with SJIA, I don’t notice when things become worse. I have always known they were possibilities of this rare disease that has taken so many lives.

The one thing that was carefully guarded from me was the possibility of losing a large part of my vision. And because it was guarded, I was unprepared for life changes that would include loss of my vision.