Hello dear reader!
I was approached by the Ataxia Canada Foundation to write a blog about my life with the disease. A blog that I will simply call Ataxia and I where I will tell my adventures with this unwanted and invasive condition, Friedreich’s Ataxia – or FA, a serious genetic disease and degenerative.
Some already know me, but I will introduce myself anyway! My name is Emmanuelle Poirier St-Georges, but you can just call me Manu – I’m 35 years old and from Quebec. I was diagnosed with FA at the age of fifteen. I am determined, passionate, sometimes rebellious and … full of flaws, of course! In short, I am an ordinary young woman. I have been in a wheelchair since joining Ahuntsic College in 2001.
During my 14-year obstacle course in university that culminated with three diplomas, I have also experienced many experiences and I can share many of these with you on the blog! More importantly, if people have heard of me before, it’s probably because in September 2014 I published my first autobiographical story. But why me? … Question that comes back tirelessly in my life, and probably in that of any sick person in general, so I came to the logical conclusion that “why not me?
Mind you, it may be for communication skills. I have a bachelor’s degree in French literature, it allows me to put words on what I feel. To let off some steam, to make my voice heard: even if it is only in writing, at least it is not tainted by the disease.
Because, yes, I have a kind of love / hate relationship with my sonorous voice. It is dysarthric – that is to say, a discordant tone – at a horribly slow rate and by these facts disfigured by Ataxia, but I know it is relatively beautiful! Nevertheless, in writing, I have more freedom of movement to define myself.
Moreover, I am more than anyone aware that it will come a stage in the evolution of the disease where I will regret the time spent using a keyboard. I’m just enjoying it right now! It will perhaps demystify the reality of the disabled!
In the next episode, I will start approaching the continuation of studies when one is handicapped, and I will give you my point of view. However, I remain open to any comments or suggestions on the choice of subject!