So, what’s new these days? For my part, I’m waiting for news from my editor, patiently, about the publication of the manuscript that I sent him some time ago! If you are nice, maybe I’ll talked about this new in my next blog.
In the meantime, I’m going to talk about one of the almost inevitable consequences of any disability: the desire to overcome this obstacle and the thirst for freedom that it generates! And this thirst is even greater when the handicap is severe! When one is handicapped, autonomy becomes an ideal to reach and to be free, to depend only on oneself, becomes often an inaccessible dream. Of course, everyone will react according to his character; my remarks will not be applicable to everyone!
In addition, I have FA , a degenerative disease. In other words, the time not only slips quickly between the finger, it steals my identity at every moment! … So, my views are necessarily biased by a certain “urgency to live” where every moment is worth its weight in gold. Without wasting too much time, each of these moments often forces me to play with its limits to make it priceless!
And I irretrievably thirsty for life. Thirst for everything I can not do, or more, do. Thirst for what forbids the disease. Thirsty to be able to choose my life in fact. It sometimes pushes me to act stubbornly according to some, to be demanding and quite perfectionist too. I have to let myself do what I am still able to do, I must leave the illusion of being free of my movements!
Recently, I had a motorcycle ride in a sidecar, with the Indians motorcycle group – for the benefit of the Ataxia Canada Foundation and it was awesome! Although I was not in control of the machine, the feeling of freedom that gives the wind that whips your face with intensity is indescribable! It was like a sting of freedom and the young woman seven times tattooed that I am finally found shoe with her foot.
The feeling of being fully alive and totally free, I felt that during my parachute jump (in 2009). Something that made me put my guard down voluntarily for once, I could let myself go; nature took over. I chose to let go. Freely.
In short, I hope that my short testimony will help you better understand a loved one in a situation of disability, better understand what is happening to us! In two weeks, as I mentioned at the beginning of the text, I will discuss a little bit about my next autobiographical story and why I still feel the need to tell myself.