So that’s exactly what I did. I went to the gym to try to get stronger. But exercise seemed to make things worse. I’d try to do push-ups, but I could barely squeeze out assisted ones – my arms felt like they were crumbling beneath me. I thought maybe cardio would be easier, but my legs would just shake under me. My fingers also started twitching, and I had intense fatigue. I would nap for hours every day and still have no problems falling asleep again at night. My symptoms seemed weird, but I wasn’t super concerned.
I saw my GP about my symptoms on July 14, 2021. (I waited until I was double-vaccinated before going into a hospital.) They did an MRI of my brain, but nothing came up. She mentioned that ALS might be a possibility, but a very unlikely one – it’s very rare, and I was thought to be too young to have it.
She referred me to another neurologist for a second look. They did a few particularly uncomfortable tests to figure out what was going on, including a spinal tap. Basically, you curl up like a giant shrimp and are probed with a huge needle to remove fluid from around your spine. I felt like a maple tree being tapped for syrup. (If you’re not Canadian like me and don’t know how syrup is taken out of a tree, well, now you know.)
While I was going through all of these tests, my issues were getting progressively worse. My walk really started to get weird, and people were noticing. That summer, I watched The Theory of Everything, the movie about the famous physicist Stephen Hawking and how his ALS progressed over the years. I noticed a lot of similarities in our symptoms. I thought, “Maybe the universe is telling me something.”
On October 21, 2021, I was diagnosed with ALS. But by that point, I pretty much already knew what it was. The doctors told me what was going on, and I said, “Okay, thank you. I have a class to get to. Can we just…circle back about this later?” They seemed confused. I don’t know if they had ever experienced someone with my sense of humour or who coped with this diagnosis in that way.
Honestly, I didn’t have many hobbies prior to my diagnosis, so from that point forward I decided to take one for the team and make ALS my entire personality and just run with it. (Somewhat kidding.) Seriously, I wanted to raise awareness. A lot of people think this is a disease that only affects old white guys. It can happen to anyone. I don’t want to scare people and make them think, “ALS is coming for you! You better watch out!” but I had no family history of this disease or previous health issues. I got this diagnosis as a healthy person in my 20s.
Plus, the main thing my generation knows about ALS is from the ice bucket challenge back in 2014—we’ve really got nothing else. I was mindlessly scrolling on TikTok a lot, so I decided to start posting there, which included a video about my diagnosis day (AKA being told I was going to die, but also me telling my doctor I needed to find a job). It blew up, I think, because people my age really want to learn about these things and understand what symptoms look like but still have a dark sense of humour about it.