My image of ataxia. Ataxia Notes #3

When I was a child, my parents showed me the world. As I grew up, my mother showed me ataxia.

When I got the diagnosis, my first image was the one I knew because of my mother.

I really didn’t want it and I was rebellious, but when I thought about ataxia, she was what I saw. My disease was her. I saw that she is weak and helpless, and that’s what I felt. Uncertain of the future. Unable to plan. Ashamed, reluctant to talk.

And I was like that too. Little, ashamed, vulnerable, scared, and insecure. Inside me. That little ataxia. It sat and was afraid of challenges, new things.

Think about it – where did your image of ataxia come from? Has anyone shown it to you? Seeing another sick person and their attitude towards the disease likely determined your reaction. How this person was, how they felt, how they behaved – they can influence you in an unconscious way.

Perhaps this person has changed over time. Maybe they accepted the disease. Maybe they showed you that life is worth living. If not, if you keep denying it, a lot of work awaits you. Accepting your own illness is only one part. Super important, but final. More importantly, it is freeing yourself from this image that limits you. It’s your ataxia and it’s up to you how you perceive it. Don’t think about ataxia as you have been taught, possibly wrongly. Consider your own life.

Thanks to therapy I have finally learned to draw my own picture. Finally, my own ataxia is different. Maybe it is not as perfect as I would like, but it is not my mother anymore. It doesn’t feel limited or ashamed. Maybe it gets tired quickly, but it wants to try. It wants to develop. It wants to be in this world. And I think that’s the kind of ataxia I might like.

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