Translation for BabelFAmily: Claudia  Guiraldes

Let me introduce myself: My name is Federico. I was born a long time ago in 1986. I have FA; if you don’t know what it is…then don’t ask me because in fact, I won’t know what to tell you. I’m one of those people who would rather not know anything or only what is strictly necessary and would rather press ahead, being aware that I have Friedreich Ataxia, but at this moment in time, I can’t shake it off me. Finally in 2005 I decided to use a wheel chair, after doggedly refusing to use it to help me move around. I finally gave in because I looked as if I was drunk. It was a very painful step to take, how could it not be, but it did not become traumatic for me. I knew who I used to be yesterday, and that I’d carry on being that person; hence, little by little, the fear of appearing in public started to subside. All this is done progressively, everybody who’s affected by FA knows this, but it’s a critical moment: one can choose to remain in the shadow, accept it or ignore it. There is no right or wrong way; the solution, will be the one we feel we are able to take on and carry through.

As far as I’m concerned, I decided to ignore ataxia up to a certain extent and to keep slowly discovering what’s in store for me, finding solutions as I come face to face with the obstacles. “Hey, I’m disabled but I’m not attempting to say that I’m perfect!!!” The grey moments are many, sometimes too many. The times when I’m nervous, the days when not waking up in the morning seems as it would solve everything, the fear of the future that no one can foresee… all these feelings are common to all of us. However, I try not to allow them to take over my days and I think instead about what I’ll have for a meal tonight… I had my dreams and passions too, which turned into smoke. I also took decisions ruled by fear, as the decision not to become a photographer or the disappointment when I realised I could not work as a barman or any other job that youngsters of my age do in order to bring some money home and feel “a man” in every sense of the word. Then there are all the physical constraints, such as not being able to run along the beach with my girlfriend, loss of sensitivity and coordination or not being able to make love standing on one leg (hey, I’m only joking!!!). But even these limitations, although sometimes I think of them, I decided to find out about them as they came along, without worrying beforehand. This way, I enjoy the present more fully and I manage to relate in a better way with those around me, my friends, my girlfriend, my family. I drink, I used to smoke, I make love…summing up, I am a 23-year-old man, I want to live life just like the rest of the men of my age and if something bad is bound to happen to me, bad luck!! Anyway I don’t take drugs either! Often my brother and I, because of the arrogant way in which we live ataxia, come across as obnoxious and conceited, but I don’t want to be an example for anybody. I just want to live like anybody else and to those who point out that I have ataxia… I reply that I am aware, and I'm proud of it. Next time I’ll talk to you about my new life, about my passion for hand bikes and, modestly, I will give you some advice I was given myself by others, which worked for me and I am very grateful for.

Federico Villa