So, how are you doing this week? I buried the hatchet with my Ataxia. I find it hard to imagine that anyone could have pity on me; I know how to take advantage of the little that I have. I am as happy as anyone, or more, after all … Is not the goal of all lives on earth to be happy??
In short … One of the secrets of my well-being is undoubtedly related to the fact that I can communicate what happens to me and the emotions that cross me to make myself understood and to be able to share my burden. My voice is already being tainted by the disease and my words often misunderstood so I use writing. I am rather good at expressing emotions through my texts, to master the words – the writing of the self has quickly become my weapon to continue the fight and not give up!
I take this opportunity to talk about my reality, but also that of many other disabled, to allow people to better understand us!
I know I tend to speak on behalf of all the ataxics who certainly have their own vision of things, sorry for that, really! I’m just trying, to the best of my abilities, to defend the status of a disabled person, a sentient being with reason, who is often the subject of an infuriating lack of consideration!
This trend is particularly felt in my first autobiographical story published in 2014, Une histoire de taxis d’ataxie Ou la dernière illusion ,but especially in the one that will appear soon.
In my head, this sequel will be released this fall now – its release has been postponed several times – but I just got the positive answer from my editor (Zyeudor Editions) so we’ll see! (Psst !follow my progress on my FB page: https://www.facebook.com/LaDerniereIllusion/) This book has the temporary title Other fragments of an ataxic and tells the years passed between the end of my first book in the spring of 2012, reaching the age of thirty-five in early 2019. I talk about my daily life with the disease and the lessons I draw from it in a story filled with authenticity, as in this blog but in one hundred and sixty-eight pages. And this story will be the second of a probable trilogy.
Because, for me, having a degenerative, potentially life-threatening and incurable disease like AF is a tragedy in three acts. We must first accept this disease, live it fully and learn how to die.
Therefore, after having learned to love me despite this genetic horror in me, I lived this second act: I wrote it – one does not go without the other at home! 😉
I will then have to write the last volume, because even if my body is dying, I continue to live. And the future still holds me beautiful surprises, I’m sure!
Well, I think I said enough for this time! At our next interview, I think I approach the Machu Picchu Challenge that I noted in July 2015, along with three others with Ataxia!