Hello! Ataxia notes #1
I was diagnosed with hereditary ataxia three years ago. But as I say often, even if I have ataxia on paper, I don’t have it 'yet’. Most people will not see a difference but the sharp eyes of my family members already noticed in me some ataxia traces. For a lot of time, I was trying to comfort myself with a thought that I should be happy because I am still healthy. I can still do things. I can still work. But I was not happy. And I could not understand why. I imagined there is some kind of „ataxia club” and if I am not disabled enough then I do not have a right to complain, to feel unhappy. Now I know it is a bullshit. Because even if you are „only” diagnosed with a heavy disease, you are screwed. Even if you are still healthy, your mind can be fucked up. Recently I read the sentence „Behind closed doors I would cry – mostly in fear of what was to come” and I think it is so true. Because most of the time I live in a fear of the future and I need to deal with this fear.
I know it all sounds depressing. Maybe that’s not the way a blog should start. A blog that I want to devote to showing how I fight for hope and normal everyday life. But I have always been characterized by complete honesty, and it is through this honesty that I want to win you over. I also have a depression so I’m going to write about mental health a lot. Therefore, stay with me.