I can’t say I am sure I ever lived a completely normal life. Who does? But my current normal is something I could have never imagined.
It’s hard to pinpoint but I guess my life started to diverge from the typical path when I was about 13, it’s when I got my first “big break”. Despite conducting my first science fair experiment at 8, and continuously from then on, it wasn’t until 13 that somebody other than my teachers and parents really took notice. A professor from a nearby university saw my project at the local science fair, and invited me and my science fair partner (and best friend to this day) to come work in her lab and spend our afternoons conducting our experiments in a formal setting. It was also the first year I was invited to attend the Canada Wide Science Fair, the national fair that brings together the top projects in the country each spring. We won a bronze medal and the rest is history.
I think it was a bit of luck coupled with a lot of hard work, but the opportunities started pouring in. I continued my research both on my own and in university labs, ranging from remediation to stem cell work. I spent a summer in Spain teaching english, and was 1 of 4 young Canadians to travel through the NorthWest Passage on Canada’s Icebreaker The Amundson as a research assistant. I won a coveted Gold Medal and best of category at the national fair, and at 18 I was named as one of Canada’s Top 20 Under 20.
Things were going great. I had big goals and even bigger dreams.
Then I got sick.
The decline started slowly. My first few years of Uni seemed normal enough. Sure I was plagued with constant step infections. And pneumonia, bronchitis and sinus infections. Soon my kidneys started acting up. But it all still seemed par for course. I was living in a University dorm after all, and dorms are notorious for being cesspools anyway. Getting sick seemed normal.
It wasn’t until I was in the middle of nowhere that I can really pinpoint my precipice of illness. I was on a small island off of Cuba called the Isle of Youth (a bit ironic as its where my carefree days of youth started to meet their end). I made a last minute decision to hope on a plane to spend nearly weeks in Cuba as part of a research program. It was going to be a summer of sun, science, and scuba diving. A big part of the program was diving nearly daily in a reserve to study the reefs and conduct surveys. Despite spending a great deal of time on boats in the past with no issues, the first week I was plagued with “sea sickness” but even once my feet hit solid ground the vertigo and dizziness did not go away. This coupled with the feeling my head was being impaled with screwdrivers led me to spend several days in bed. I wasn’t even well enough to get up to eat and the medication I normally took for my headaches wasn’t helping much. The fatigue was so overwhelming. Just a week into my summer I thought I would be heading home.
Things were never quite the same after that trip.
It was my second year being trapped in my apartment when I decided I’d had enough. I was feeling like life was getting away from me and I wasn’t living up to the expectations I had of myself. For the first time my illness was robbing me of my dreams.
My migraines became so intense and prolonged that they were leaving me in bed, trapped in my apartment for 10 days at a time. School took a backseat as I wasn’t well enough to make the trek to campus. Luckily they got me accommodations to work from home and get notes from my peers, but being isolated from you peers and not able to attend lectures or labs really changes the university experience.
So on a whim I applied to The Next 36, an accelerator program for Canada’s most promising young people to help them launch their first companies. I was a science nerd with no business background, but I got invited to the interviews in Toronto. I hadn’t told my parents I had even applied and when they heard they were pretty adamant it would be best for me to try and defer the invitation to the next year, give myself some time to heal and get better.
Despite a lifelong fear of needles, I learned to self-administer all of the IM injections I was usually given in the hospital so that I would be able to medicate myself through the weekend in Toronto. And I guess it was worth it because I was accepted, and a few months later at 21 founded my first company, MycoRemedy.
For the next few years things were going great – on the outside. The company was winning awards, and I was being invited to speak across the country, even to the Senate of Canada. But all the while my health was deteriorating. I was getting sicker by the day. And at newly 22 I moved back home so my parents could help care for me.
This worked for awhile and I tried to push through. But you can only pretend for so long. I was at my breaking point.
Through my decline, I had a neurologist who insisted that it was nothing more than chronic migraines. Now please don’t misunderstand because migraines are terrible and I wouldn’t wish them upon anyone, but I just knew there was something else going on. Migraines just didn’t explain why the legs that carried me up mountains for most of my life were now struggling to even carry me up a few stairs. So I took my health into my own hands.
Being a scientist naturally I started doing research. I read HUNDEREDs of papers and studies trying to pinpoint just what might be causing my symptoms. Though my life as a gymnast and then a dancer I knew I was always more flexible than most, where others worked so hard for their flexibility, mine always came naturally. In Highschool I was at physio several times a week dealing with dislocated S.I joints, dislocated hips, and countless slipped disks in my back. That’s where it clicked. I was almost certain I had Ehlers Danlos Syndrome. I fit the symptoms to a tee. So with a bit of research I found the best doctor in my area for EDS.
From the moment I shook hands with my geneticist he knew I had Ehlers Danlos Syndrome. But unbenounced to me he had some other suspicions. Over the months since my diagnosis of Ehlers Danlos and Mast Cell Activation Syndrome, I started to decline more significantly. At a follow up appointment – which we thought was just a normal follow up – I got the surprise diagnosis of Mitochondrial Disease. I had never heard of it, I didn’t even know that’s what all the testing was for.
Mitochondrial disease is a progressive genetic condition. I was born with it. There is no current treatment or cure.
So now you’re caught up. Since my diagnosis of Mito nearly a year ago I have put my life on hold to focus solely on healing and focusing my energy on my medical needs. But that stops here.
I am done waiting.
I am not going to get better. I have accepted that.
The thing I wont accept is that my illness can take away my dreams.
This is the start of my second act.
I am determined and ready to start chasing after my dreams again.
Mito won’t stop me.