My history !
by Danielle Tremblay
My name is Danielle Tremblay. I am 49 years old and afflicted with Friedreich's ataxia. I am the eldest of a family of 3 children (one girl, two boys). There are twenty-two months' difference in age between myself and a brother who is not afflicted but who is a carrier of this terrible disease. As for the other brother, there are nine years between us. The latter was also afflicted and had fragile health. He did not accept his handicap. He had a thrombosis which paralyzed him on his right side for a period of two years, and he died at the age of 22 years old.
I find that an individual's morale has an effect on ataxia and there is no doubt that Friedreich's ataxia is hereditary. My cousin was afflicted. She was younger than me, and when her parents died it was a terrible ordeal for her and she could not overcome it.
The first symptoms set in in my seventh year. A lack of balance caused me to have an unsteady walk and I had a spinal column which deviated into an S. The school doctor immediately diagnosed my state (without knowing the exact name of my disease, but I had one!) and I was transferred to a school for physically handicapped persons.
I completed my secondary 5 with a diploma of an accountancy clerk and I returned to my studies 8 years after high school. During my collegial studies, which lasted 5 years, I worked at several projects which community organizations offered during the summer season in order to pay for my studies in a private college. I graduated with honourable mention, and I received my diploma of collegial studies in the techniques of social assistance. Following this, I obtained a permanent job in a community organization.
At a certain time, I was no longer able to keep up the same pace at work after the death of my brother, so I submitted my resignation. I isolated myself and I wrote a lot. I realized my dream: I wrote my autobiography "To be handicapped or to be a handicap". Eight months later, I got back to the treadmill of work by short-term projects, and I did a lot of volunteer work. I met people in order to finish my book, which I had edited. To cover the costs, I collected money with the help of my mother and of Claude St-Jean.
A medical researcher for Friedreich's ataxia became my friend. I asked him many questions concerning the association. He showed me the way to join the ranks of the administration council of ACAF. We are in 1992. I met Claude St-Jean, the founder of the association, and I studied the workings of the organization. I was the administrator and secretary of the council.
I lived with my parents. My mother was so overprotective that I no longer wanted to stay in the family home after an existence of thirty-five years. Unknown to my mother, I made a request to the City of Montreal to obtain a low-income apartment. Eight months later I obtained one. I organized the moving, the cleaning, the furnishing, but it was only one month before the end of the work that I told my parents about it. Once installed in my apartment, I was very happy to be free of the hold of my mother.
After so many happenings, calm reigned with me. I looked for something which could captivate my spirit. I settled down to write. I told the story: the state of my emotions on being alone in the apartment, my recreations, my occupations. Little by little my second book took shape, *The hopes are realized...*
At this time I am still seated on the administration council as vice-president for my tenth year. My feet have become very crooked to such a point that I wear prostheses with orthopedic shoes in order to avoid having surgery to straighten them. Subtly, the evolution of the disease progressed, for I use diapers, and I drink with a straw for if I don't I choke constantly. Someone feeds me, washes me, combs my hair, in short I am dependent on everyone.
I receive home support services for six hours a day paid for by the CLSC of my district. I am my own manager. I manage the persons who render me the services and the accountancy is done by the Caisse populaire Desjardins of Ville d'Anjou. My personnel do not change if I don't want them to, unlike the home support services which I receive by specialized agencies or by the CLSC's.
25 years ago, I met a very interesting boy at work and I believe that it was reciprocal. We were always together and little by little love set in. He often came to my place. For the following five years there was silence, to my great astonishment!
One day I received a phone call from him asking me : If I was still free, and if he could come to my place, <<but now I am accompanied by a helper dog>>. He came, and we spent the night together. He explained to me : that he was going through a divorce, with three boys and three granddaughters. Jasmin is his dog's name, and he is very docile and obedient and he helps my beloved to walk, for he too is handicapped.
Now I live a love novel, for he is living with me since two years and it is unbelievable, I got married before CHRISTMAS 2005 !
| Document(s) to download | |
| Les espoirs book (JPG format) | |