Canberk Çolak – Stay Strong

Hi there, I’m Canberk. I was born and raised in Turkey. We are with three siblings and I’m the youngest of the family. I have one brother and one sister who is a doctor and plays a very big role in my diagnosis of ataxia. I’m the only one with ataxia as an exception to everyone I am related to.

I think I can say that my childhood was very normal. I was a very healthy kid and ran everywhere. Even if sometimes my parents told me I might be hyperactive. Neither I nor my parents thought that I might have a chronic disease. But when I was a teenager I started to show symptoms.  I was not sure what was happening to me but my writing skills were getting worse in the first place. I had a hard time when writing because I couldn’t hold the pen correctly. When the symptoms started, everyone thought it was just a kind of psychological effect related to stress, no one thought it was a physical condition.

Then my balance got weaker and weaker day by day. I couldn’t stand up on one leg anymore. Due to my weak balance, my gait has changed in a negative way, and also I fell down a few times. Therefore, they decided we needed an expert opinion on this. So I set up an appointment with a neurologist in Hatay where I live in Turkey. They did an examination and I also took an MRI. At the end of it all, they said I might have a genetic disorder but they hadn’t figured out what I have exactly. So we needed to see another doctor who specialized in genetic disorders. Long story short, they diagnosed me with ataxia. But it was a just general diagnosis with the type still unknown. It was the very first time I heard about ataxia. I didn’t know what would bring me or what to expect in the future. Actually, I didn’t care a lot. I was always thinking “never mind and keep living, how much worse can it get?” I was more like the relaxed guy in the family, compared to how I am now. But one thing is different: I did not know how much worse it be.

In the summer of 2016, I, my sister, and my brother-in-law went to Germany to see a neurologist specializing in ataxia. At the clinic, they examined me again and performed some tests I never heard of before. When all was done my neurologist told me I have AOA2, which means ataxia oculomotor apraxia type 2. The doctor also told me that this is one of the rarest type of ataxia. That was a breaking point to me.

Then I realized I might be in a wheelchair or I might fall down and die suddenly, so there may not be a lot of time left for doing things. I need to live my life faster than way I want. I was studying for university exams at that time. So I went to Ankara, capital of Turkey, for university and started to live on my own. My biggest passion at that time was playing clarinet. Of course I was going to physical therapy three times a week as well. I never missed my treatment but I also never ignored want I wanted to do. During my second year at university, I decided to move to another city. I changed my school too and moved to Gaziantep which is located Southeast of Turkey. One day I watched a few paragliding videos on Youtube and love the action. I thought that time “why not”:) I reached out a organization and booked a flight. I have always been a quick-witted person since the diagnosis.

In Turkey, there is almost nothing for disabled people and there is nothing for ataxians. So I start reaching out online to find people like me. I found some Facebook groups on ataxia that I joined. I keep searching and hoping for new treatments and clinical trials. I recommend to everyone: never lose hope.

I’m a dietitian now. I graduated in 2019. Studying with ataxia was kind of a compelling experience. I took exams on a computer during the last few years of school because of my writing skills. I knew that everyone stared at me but I had to do this, I couldn’t be normal. My classmates were trying to help me as much as they could. Since I graduated, I work from home because I get a little ashamed when walking outdoors. I know that it’s not my fault that I have ataxia but I can’t stop feeling ashamed. Sometimes I feel so depressed due to having it. But I have to stay strong and fight every single day. Because I have the ataxia, but ataxia doesn’t have me.