I hope that my testimony brings hope. My name is Emmanuelle Poirier St-Georges, I’m 25 years old and I suffer from Friedreich’s ataxia.
As a child I loved sports: soccer, handball, gymnastics and ballet. I was always super competitive and I couldn’t understand why at 12 years old my performance began to collapse. My declining sense of balance got my parents and me thinking. After multiple unsuccessful appointments a paediatrician referred me to the Sainte-Justice Hospital where specialists made the diagnosis. I was 15. Oddly, I received the news very well, it was all quite remote, I was pretty, rather popular, quite superficial in fact! The teenage crisis came later: the sense of profound injustice, rebellion (my poor parents!), the fact that I was really different and mostly my inability to outdo everybody (in sports mostly) so I could prove to myself that I still belonged. Thus intellectual performance has become my last hope, the natural path a born champion like me had to follow.
I was always gifted for studies, a little nerd who got good results without opening her books; but as a teenager I started to like school. I wanted to continue being the best! So I opened myself intellectually; I discovered the beauty of the imaginary and the promising path of intelligence. I completed high school without a wheelchair or a walking aid thanks to my friends who unconditionally supported me, literally. After high school I ordered myself a wheelchair: I wanted to go to college and the hallways there were too long for me to even think of dawdling along in my unsteady (dangerous) gait. In college I enrolled in health science, which was the best: pass this and you can go anywhere after.
My new life as an invalid turned out to be hard on my overdeveloped ego and pride! The three years I spent in college saw me adapting. The first two were probably the worst of my short life: adapting to my limited condition, to the degradation of my state because I used a wheelchair, the existential questioning an 18 year old has, the looks other people gave me… My network of friends continued its excellent work: I came out (because I have sunk a little) stronger that I thought and that I found in me. A beautiful strength and a confidence in my powers that have not diminished despite the illness, it’s as if I was born to overcome such a hardship, as if Victor Hugo was right: “Sorrow is a fruit. God does not make it grow on limbs too weak to bear it.”
Pursuing my life, my dreams, I started university when I was 20. I decided to do a bachelor in biology, specialized in animal physiology at the University of Montreal: since I was passionate about studies, my competition was (and still is) now purely personal, I had to prove myself that I was able to succeed without getting immersed in intensive studies (ex. medicine) because I also wanted to lead a social life. I realized that I had limits and that I couldn’t do everything. Thus I was able to go clubbing, have a “teen” life and go to my not so difficult classes, dealing with the hazards of impossible schedules and of a hobbling adapted transportation. In university I met some fantastic people. I made the acquaintance of several qualified people in the domain and I fell in love with evolution, population genetics and of course, cell biology.
At that point I was certain of one thing: I wanted to continue my studies with a master’s! After seriously thinking about studying evolution in mammals, I considered studying genetic diseases. So I contacted Dr. Bernard Brais, a neurologist who has a neurogenetical lab at Notre-Dame Hospital. Immediately Dr. Brais expressed his interest in supporting my studies! I started my master’s degree in June 2008 with a medical research project that combined evolution and molecular data under Dr. Brais’s supervision. I obtained several scholarships simultaneously and the project seems so promising that we think to make it into a doctoral thesis; I’m blissful!
In short, this is my life! I bite in it, I don’t look back and even though I sometimes think of what it could have become, I focus on the present. I want to be happy; I have found a nice balance and an extraordinary entourage. I have more than some: I have an out of the ordinary personality and iron optimism, so what does a deficient body matter? What matters is not the limit that was imposed upon us but the one we impose upon ourselves! My favourite citation: L. Brown said: “Shoot for the moon and if you miss you will still be among the stars.” Another citation to end with belongs to A. White: “I am not afraid of tomorrow, for I have seen yesterday and I love today.”