“She’s in a wheelchair. How did she just stand up?”

I’m an ambulatory wheelchair user. What does that mean? I need my wheelchair, but I can also walk.

This might be confusing to people who see me and don’t know any ambulatory wheelchair users, and that’s understandable. Let me explain my own personal situation.

I have a progressive neuromuscular disease called Stiff Person Syndrome. This causes an array of symptoms like muscle spasms spanning the entire body, falls, and as you probably guessed, stiffness.

Why might you see me in my wheelchair? I need my wheelchair because my muscle stiffness gives me a strange way of walking, making it difficult, and going any sort of longer distance isn’t possible for me without it. It also prevents falls, should I have a muscle spasm. I can’t stand in one place for very long. For these reasons and more, there are a lot of things I wouldn’t be able to do if my chair weren’t around.

Why might you see me walking? Because I’m lucky enough to have things I can do without my wheelchair. Even if I have an awkward shuffle that people stare at, I’m able to walk into a restaurant. I‘m able to go into a small store if we’re not going to be long. I’m able to get up and take a photo. I‘m able to walk short distances. And when my treatment is working well? I can do even more.

So I’ve explained to you why I’m an ambulatory wheelchair user. But there are so many more reasons why people might need a wheelchair even if they’re not stuck in it.

Maybe it’s a matter of safety. Maybe they have bad lungs and struggle to breathe. Maybe it’s a matter of weakness due to an invisible illness. Maybe it’s a matter of managing chronic pain. Maybe it’s a matter of neurological issues, like balance and coordination.

Many ambulatory wheelchair users are SCARED to get up. They’re scared of being judged, and they’re scared that one day someone will snicker and say, “She’s walking! It’s a miracle!” Because so many people don’t know the long list of reasons that someone might be in a wheelchair.

So I hope this reaches someone who maybe didn’t know why some wheelchair users can walk. All we can do is help educate those who are open to learning! And a big thank you to those who are always willing and wanting to learn.

The Diabetes Blame Game

Diabetes might win a million little battles against me each day. But I will always come up on top of it.

Diabetes is a disease full of self-blame. The mentality is that YOU overgave your insulin. YOU underestimated or overestimated the carbs in what you ate. YOU overtreated your low. And it’s an awful mental spiral, that makes you feel like you’re doing something wrong.

The truth is is that DIABETES made your blood sugar high. DIABETES made your blood sugar low. DIABETES is the reason you have to count carbs in the first place. DIABETES is the unpredictable factor that makes it so that you can do the same thing one day and have perfect results, and do the same thing the next and be on a rollercoaster.

To all my fellow T1Ds, let me remind you, in case you forgot. You are living with a disease where things can change at the drop of a hat. You are living with a disease that has a mind of its own. You are living with a disease where you are forced to make decisions so many more times than any human should have to every day to keep yourself alive. And you’re here. You’re alive. You’re doing it, even if it feels sometimes like you can’t do it. Here you are. So yeah, Diabetes might win a lot of times during the day. But as many times as it has almost knocked you down, every single day, you’re still standing. So you’re the real winner here.

Friends For Life Canada 2019

If you’ve read my blog, you know about my undying love for the Friends For Life Orlando conference. This weekend I attended the 2nd ever Friends For Life Canada. And as you can imagine, my love hasn’t changed.

For those of you who haven’t read about Friends For Life yet, it’s a conference for people with Type 1 Diabetes and their loved ones that is put on by Children with Diabetes. In Canada, it’s also put on by Connected in Motion. The colours green and orange never mean more than they do here. Green bracelets are designated for people living with Type 1, and orange bracelets are worn by those who love somebody with Type 1.

My mom and I (green bracelets) with Jess and my dad (orange bracelets).

This year the conference was special to me for two reasons. The first is that last year we were meant to attend, but I ended up in the hospital. My health got in the way, as it does sometimes. So I was super thankful that this year it didn’t get in the way and I actually got there! The second reason being that my cousin Jess, who is probably the person closest to me in my life, found out she could join us last minute. Having her there and watching her have fun learning even more about Type 1 than what she already knows from watching me, was such a sweet experience. She is the best supporter and my sister in life, and I’m so glad I got to do this with her.

Me (left) and Jess (right)

Friends For Life Canada is much smaller than the Orlando conference. Just over 500 people, compared to just over 2000 people. So that had its pros and cons. A big pro being that it’s much more intimate. Another pro being that you’re meeting a ton of amazing people who live closer to you! So hangouts over the year are even more possible.

The conference started with a room full of people and a truly moving keynote speech by George Canyon. George is a country singer, as well as a part of the Canadian Armed Forces and a pilot. He has been tirelessly advocating for Type 1 diabetics to be able to have more rights to fly planes, and as you can see in the news lately, it has paid off. This man is truly one of a kind, and he captivated the room with his life story, teaching all the kids there that they can be anything they want to be and do anything they want to do with Type 1 Diabetes.

The audience during George Canyon's keynote.

With George Canyon and Laura Billetdeaux.

That Friday night, Niagara Falls were lit blue for Diabetes awareness in honour of Friends For Life. It was so special to look out the hotel room and see one of the wonders of the world representing us.

Niagara Falls lit blue for diabetes awareness.

Now onto a slightly less serious topic, but very important - food. I can never write about my Friends For Life experience without talking about the food. So thankful to the team from Children With Diabetes who work for hours upon hours on figuring out the carb counts for all the food they serve. Because of them, the people with Type 1, and all the parents of the younger Type 1 kids can have a break from the exhausting task it is to constantly be carb counting at every meal. It seems like a small thing, but it is such a nice little mental break that we don’t realize we need until we get it.

The sessions I attended that stood out to me were Body Positivity & T1D by Dr. Deanna Paolantonio, and Advocacy & T1D by Kimberley Hanson of Diabetes Canada. I wanted to share the following photo I took during Kimberley’s session, which details what we have successfully fought for people with Type 1 in Canada to be allowed to do, and what we’re still fighting for.

Slide from Kimberley Hanson's session.

 We’ve come a long way, but we still have a ways to go! But I just wanted to share my gratitude to those who are fighting for our rights, and especially thank Diabetes Canada for all they do.

I also have to write about my own session, which I had the honour of presenting with my friend, Michelle Lord. Early Sunday morning we presented our talk; Diabetes Online Community: Making connections in the T1D digital world. We had a great time talking about the positives of social media, and how powerful it can be in bringing us together. You might be able to catch a little bit of it on her YouTube channel, which is quite amazing if I say so myself.

Unfortunately, we had to leave a tiny bit early from the closing keynote by Banting House curator Grant Maltman. I say unfortunately, because we did get to see most of it, and what we saw was so insanely captivating. So much so that I wish that the entire world could hear what he had to say. We learned about the discovery of insulin, back to times way before the beloved Banting and Best, and what diabetes was like in the world before it even had a name. I hope I get to see him tell this story again in the future! It really is a mind blowing story and he tells it so well.

Banting on the cover of Time magazine.

I left Friends For Life Canada feeling that amazing sense of community that lights me up every summer in Orlando. I already miss the fruit punch that is always served, but more importantly, I miss seeing green and orange bracelets everywhere I look and knowing that I was among people who just get it. The feeling of giving myself an injection in the middle of a room and not wondering what people around me are thinking about it... not feeling like I’m doing something out of the ordinary, never fails to take my breath away. Knowing that everywhere you turn is a family who has been through that fateful diagnosis day, and is now doing their best to get through every day with this disease, is as comforting as being wrapped in a blanket. Friends For Life feels like freedom. From from the confines of social stigma, from the isolation that Type 1 Diabetes can bring, and free from any feeling of being different. True, pure, happy freedom.

Thank you Connected in Motion and Children With Diabetes for an amazing weekend that I won’t forget anytime soon.

My T1D Diagnosis Story

I don’t talk about my diagnosis story much because it’s a little different. It’s not very dramatic. But I guess everyone’s story is a little unique.

My mom has had Type 1 Diabetes since she was 8. I spent my whole childhood with diabetes in my house. I was familiar with most of the things diabetes entails. I loved when I went on walks with my mom and her blood sugar would go low (that sounds bad in retrospect) and she would pull out her glucose tabs and offer me half of one. I thought it was the best tasting thing... how times have changed! Haha.

Fast forward to age 11. I knew my mom occasionally peed on these sticks in the bathroom (what I know now are KetoStix) and I decided one day that I wanted to try it and see what colour I’d get. After, I called my mom to the bathroom and innocently said, “Mom, what does this mean?” Her response was to do a double take and make me do it again to make sure it was right. And then she told me not to worry about it.

I can’t imagine what my mom went through. When she was pregnant with me, she was told there would be a 5% chance I’d end up having Type 1 Diabetes. This must have swept the rug from under her. Because I imagine that happening with my future child, and it’s like a pit in my stomach. Because you don’t want this life for your kid.

She called my pediatrician, who told her to to call the diabetic clinic at the Montreal Children’s Hospital, and gave her the number. After explaining the story, my future pediatric endocrinologist called her back. He told her what she didn’t want to hear; I would likely be Type 1 Diabetic. And she asked him if there was anything she could do to stop it, to which he said no. She was told to check my blood sugars periodically, and she did.

I don’t remember too much from that year, apart from having to test my blood sugar every once in a while. Which was like torture to me at the time. My parents decided that I didn’t need the stress of knowing I was going to become diabetic, so they didn’t tell me. But I think a part of me knew. But at the time, I was just a kid focused on the moment and the only thing that bothered me was having to test my blood sugar.. and maybe the thought of doing that all the time like my mom freaked me out a bit.

Now I was 12. My mom was still in continuous communication with the pediatric endocrinologist. I was more clued in, and the waiting game was coming to an end. Talks of me starting insulin finally started. To me at the time, having diabetes wasn’t real until I started to have to take insulin. I mean, it makes sense now. Having diabetes would be easy to ignore if you weren’t having bad symptoms and you didn’t have any work to do.

This stupid part will always stand out to me. Obviously I didn’t want to take needles. I didn’t want to “start having diabetes” and I was scared, but my parents told me that if we go to the doctor and it’s bad news, I can get a cell phone. My first cell phone. And thank you mom and dad, because that was a great distraction, and I couldn’t stop thinking about it.

We went to the appointment, and I remember my heart racing. It was bad news. I was “finally diabetic”. And I thought, “Okay... That sucks.. but I guess I’m getting a cell phone.” And my mind started to picture what cell phone I would get and what my ringtone would be. And then they told me that I was meeting with the Diabetes Educator and starting insulin injections right then and there. I thought I’d at least have time in between this appointment and then? But I listened and I gave my first injection, and learned how to do the rest. And I remember that room clear as day. I remember the scary things they taught me to do. I remember the realization that I’d have to do these things all the time now.

And so that’s my diagnosis story. I don’t tell it often.. maybe because I feel like it’s weird in some way. It doesn’t sound like other peoples’ diagnosis stories. But that’s okay, because it’s the truth, and it’s mine, and it happened to me. Plus, life is weird anyway, isn’t it?