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Ataxia and I: friendship and loneliness


For this tenth edition that is Ataxia and I, Manu will talk to you about the importance of friendship for her – for most of the handicapped probably – but also of her need to have often her moments of loneliness!

Yes, I know, it’s been too long since I wrote here… But I’m writing a great book … can you forgive me?!? … A Great book whose release date is not fixed yet, but I’ll be at the Sherbrooke Book Fair on October 19 and 20, so it will be out by then!
Anyway, I will be addressing this week a subject that is very dear to me: friendship. But this importance of friendship comes with an irrepressible need to have moments of solitude, alone with myself, at least that’s the case for me. I will explain to you…
For a disabled person, a person who must often depend on others for his needs, trusting – sometimes blindly – his entourage is essential; there is inevitably some letting go, which must be done. And who says trust, or letting go, also says friendship most of the time!
On the other hand, this friendship takes on considerable value when the disability in question is degenerative – such as those caused by FA. Since when the health deteriorates little by little, the person with a disability has the impression that everything – his health, his future, his world … – is collapsing around her. That there is nothing stable in this life, nothing to hang on the time to find landmarks … nothing, except friends. Yes, I speak from experience.
So, I quickly learned to surround myself. To surround myself with reliable, positive people, who could pull me up if necessary, that I put on a pedestal too and which I take care. And that’s what I advise every person with a disability: build a strong network!
Nevertheless, despite all the qualities that I could attribute to them, my friends can’t really understand what I am experiencing. Unless you have experienced this situation – these constant frustrations that occur and is trapping you in a body that belongs to you less and less…- no one can, even with all the compassion in the world.
Hence my need to be often be alone to take stock. Not to mention the fact that with my spasticity, my muscles are much more relaxed, and therefore maneuverable, when I’m alone, without external stress, which allows me to still perform some tasks on my own. I have my ‘’anti-social’’ periods and the more the disease progresses, the more I feel like I’m getting lost in my head – I’ll have to be careful!
Well then, at the next meeting on this blog, I will tell you the fatigue that accumulates for us, suffering from Ataxia. For me especially who is aware, that at this moment, she is pushing her luck, and her body, a little too much …
Manu xxx

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