State of being
by Mireille Noël
Who would have said that one day I would write my little testimony of life as a person afflicted with Friedreich’s ataxia? I am a native of New Brunswick, more particularly from the Acadian Peninsula. I am from a completely normal family, up to the limits, with my child’s reasoning, I considered us a rather ordinary family, in which nothing exceptional would happen. At this time, I did not suspect that times would change and shake us up quite a bit.
At the age of 8 years old, I lived through my first familial drama. My brother Marc had a bicycle accident and he died from it, he was only 13 years old. Life pursued its course with my 3 sisters and my 2 brothers undertaking to remind our parents that they must continue on. I remember that during our childhood games, two of my sisters and I myself were rather clumsy. We often fell and we did not have balance. We then developed the art of finding the perfect excuse … <<I am dizzy, I tripped on a stone…>>, in short, you know the old refrain! By adolescence, things not having improved, our family doctor sent us to consult a neurologist. The 3 oldest of the family were exempt from this chore because they did not present a lack of balance. The diagnosis is irrevocable, the neurologist informs us without further ado that we present the signs of the state of Friedreich’s ataxia. He stresses the fact that it is a state and not a disease… as if this would make it any better! I was then 14 years old and my 2 sisters were between 15 and 17 years old and a neurologist tells us that in aging we will have to resort to the use of a wheelchair.
Right after this great news, the law of silence set in. We knew a little about ataxia because two other families in our community also had afflicted persons. In my family we did not speak about it, at least not openly. We kept our anguish to ourselves. My two sisters pursued their studies at college and after high school, I moved to Quebec to do studies in documentation techniques at CEGEP Lionel-Groulx in Ste-Thérèse. Diploma in hand, I returned to N.-B. in 1988, I was then 21 years old. Friedreich’s ataxia was taking up more and more place as much from the physical side as the psychological side. It was that year that I met for the first time in my life a girl of my age who was afflicted with FA. She made me understand that life does not stop there, thank you.
And so! The next year, I moved to Moncton in the south-east of N.-B. and at the age of 22 years old I decided to procure a wheelchair and to undertake studies in social work at the University of Moncton. After 4 years of strenuous work, I obtained my BACC. in 1996.
In 1999, I decided to move to Montreal in order to be closer to my eldest sister and also in thinking that life would be better here. But oh, surprise! FA followed me! After all those years of denial, I finally understood that my <<state>> was a part of me, I must adapt myself to it.
I live in a housing cooperative in a lodging adapted for wheelchairs. My CLSC helps me to defray the costs of a housekeeper twice a month. I also have the right to auxiliary care services twice a week. Often, I am asked for what reason I do not demand more services? I always reply that I don’t need more for the time being. I sincerely believe that in all degenerative diseases, it is essential to fight the progression, certainly, when our state allows us to. I am an autonomous person, because I believe this.
The important thing is to keep oneself busy. I am the President of the administration council of my cooperative. Since recently I am also on the administration council of the Canadian Association of Familial Ataxias, the Claude St-Jean Foundation. The association has its raison d’être, to pursue research certainly, but also to create a link amongst the afflicted persons. The Eldorado Newpaper and the Internet site of the association are essential tools in order to break isolation. We must speak of familial ataxias, speak of them to others who are living the same burden, make it known. Because I finally understood that by speaking about it, the pill is easier to swallow.
Mireille Noël