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I Learn to Live with It

Michèle Pitre

Michèle Pitre

At first the doctors told me that it was a branch of the F… ataxia. I was panicking and questions filled my head: will I have to be in a wheelchair? Will my condition deteriorate? How much longer will I live? Will I die? I remember all these emotions as if it was yesterday; even though it has almost been 20 years that I know I’m different…

The neurologist checked up on me every year in order to see how my physical condition evolves and to better understand my type of ataxia. Since he couldn’t do much more, he just told me that “I was going to learn to live with it”.

After three years my husband left me and my two children. I finally got a grip. This is when I started “to live with it”. I had to fight for their sake…

I was always challenging myself; I constantly felt the urge to test my limits… This is how I learned to know my body. I realized the enormous impact of all my emotions on my nervous system and hence on all my physical abilities. I was forced to learn how to stay alert because scratches to the face or chipped teeth are still things that happen to me. I know now that I can’t do two things at the same time because it is ripe with catastrophic consequences.

All those years I haven’t stopped telling myself “I can do this”.

I have made unusual, sometimes dramatic falls. Like the time when I decided I could take up ice skating, but only managed to get an operation instead. I have also done other funny blunders. Like the time when I tripped over an underwear rack despite its being in its right place in the store…

I have also retried a few sports and hobbies. Apart from hitting myself on the face with a racket, I realized that even skittles didn’t want me anymore. Since my arms are slower to react now, it seemed like I was forgetting to let go of the ball and I kept making gutter balls. It took me 17 years to try all kinds of experiences. But it’s really these last years however that I learned the most. I only decided to let myself be guided by life. I followed several therapies in order to find well-being. I learned to love myself. I’m practicing meditation, deep breathing and relaxation. I even pay attention to what I eat. I have also realized the importance of laughter for my well-being. Let’s say, I have a lot of reasons to laugh… I really find that my life is like a comic strip, unexpected and unpredictable. It’s full of all kinds of events and accidents. It’s fabulous! It helps me to stay as far as I can from sources of stress. That was really the key for my well-being. I was able to find a certain peace that I have lost since a number of years.

I don’t have time to get bored with my daily stretching, my many grimaces and my various hobbies. Now I only think about myself. I learned that life is not a fight. We just need to learn how to cope with what it offers us. We go with the flow.

In short, I try to keep the rhythm so I can live beautiful moments with my daughter and my son and to find a positive side too many things as often as possible… like the fact that I have almost no cleaning to do now!

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