Angel Ouellet
One day when I was six years old, I saw a favourite teacher at the end of the corridor at school and ran to give them a hug. Afterwards, the teacher called my mother and told her to take me to the hospital. When I’d hugged them, they’d felt my heart beating out of my chest.
Growing up after that, I understood I had a medical condition, but I had no idea how serious it was. I remember at one point my doctor gave me a book about pulmonary arterial hypertension (PAH), so I’d be able to better understand it. I just put that book on my shelf. Then, years later, I randomly pulled it down and started flipping through it. I landed on a section about life expectancy after diagnosis. Some quick math told me I should have died four years earlier.
Through my whole childhood, my mother and grandmother — my whole family, really — had been so supportive of me. They’d always tried to give me whatever I wanted, within reason and within our limited financial means. I’d had no idea that the doctors had told them I likely wouldn’t make it to my teenage years.
I’m 28 now and I’m still here. I’ve found my communities full of those who are also a little different. I have a rewarding career in cybersecurity and a loving partner. PAH has shaped every aspect of who I am, and I think it has made me a better and more empathetic person.
I work a reduced schedule because of my health. I also need to ask for certain accommodations, which always feels a bit precarious in today’s job market. I don’t have the kind of fallback options other people have. I can’t work in a restaurant or a factory because my body just couldn’t handle it.
Everything’s just that little bit harder. That includes getting out of bed in the morning, going up and down a set of stairs, or commuting to work on the other side of Montreal’s Mont Royal. That’s why I’ve started using an electric skateboard, which I call my mobility scooter. All of that said, of all the people I’ve met with PAH, my story is one of the easiest. But that could change any day.
I don’t spend much time worrying about how my disease might progress, but the truth is that — ever since I flipped open that book — I’ve approached life as though I had an expiry date. My disease is well-controlled right now, but I know how quickly things can change. It’s scary to be in this situation, knowing that rare disease communities often face so many barriers to accessing innovative therapies. That’s why I advocate. For my future self but also for those who need access today.
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