Translated for BabelFAmily by Ayse Aktas and Caroline Williamson 

My name is Gülsüm. I am 25 years old, married and live in Bursa. Nowadays I am experiencing the toughest but also the most beautiful days of my life.
I have had problems with my balance for a very long time. For this reason I visited a couple of doctors, but they always told me that it was due to different reasons, such as my weight, bones or even lack of nutrition. One and a half years ago I never thought that there might be a neurological reason for my problems. The people around me started to make me worry and told me that these symptoms might be because of a serious illness. After that I went back to see several doctors. I actually just wanted to prove to those people that my problems were caused by stress and were not a neurological problem.
Everything was all right. My doctor told me what I wanted to hear and also told me that I might have problems carrying heavy things. It upset me to think that I will always have problems carrying things, but then again, I was happy that it was not a neurological problem.

I thought I was right, but time showed I was not. Things started to go wrong and this disease progressed inside me. By researching on the internet I found out more and more about this illness; things I didn’t ever want to know. Even thinking about the illness made me very frustrated. Finally, I was diagnosed with Friedreich’s Ataxia. I did not even know what it really meant to have Friedreich’s Ataxia, nor did I ever think I would have it myself one day. I will never forget the day when I learned more about my future with Friedreich’s Ataxia. On that day I hated all those people who turned out to be right. I had believed in myself so much that it was extremely hard for me to accept it. Nonetheless, I try to keep myself upbeat and to think positively. Sometimes I get mad at myself because I was so ignorant about what was going on around me. I never imagined there could be an illness for which the cure has not yet been developed. FA is just one of these diseases, and it’s one that is experienced by many people.
This long road, of trying to accept the illness, together with feeling helpless and desperate about it, is extremely exhausting. My husband is my biggest support and also makes it so clear to me every day that marrying him was the best decision I ever made. Despite this, sometimes it feels very lonely on this journey, trying to connect mind and body. My overwhelmingly emotional reaction to the diagnosis might be because I still cannot understand the reason why it was me. Why did I get this illness?
Now I have this enemy inside me, who tries to win every day. I guess I need to accept the fact that I have this disease and then I need to learn to live with it. I do not want to lose against this enemy and will fight fiercely to win. I believe that one day there will be a cure against this illness and everything I experience right now will be left like a nightmare in my memory, albeit one that has taught me a lot in life.