We welcome Bayram, a friend who joined us recently. In his blog post, he tells us a bit about himself.
Hi, I’m Bayram. I’m 32 years old and have Spinocerebellar Ataxia (SCA). As far as I know this condition is not well known in my family. I have an older sister and she doesn’t have it and I am very happy that she doesn’t. I’m glad to be the one with this condition because I would hate for her to have it.
I like exercising, reading, and driving. Doing these things cheer me up. I feel comfortable going out and socialising daily. When I first received my diagnosis I felt uncomfortable and could not go out. I felt terribly lonely and hated everything. Every doctor I spoke to told me there wasn’t a cure. Hearing that really soured my mood. Also, people around me treated me differently, too. I am scared. I don’t know what the future holds for me. I love driving and would not want my ataxia to be a barrier.
I want a family of my own, that is my dream.
I had a normal childhood. During college I started to find it difficult to write and could not actively participate in PE activities. After college, I entered work life. Even though sometimes I found it difficult, I felt good working. In the months leading up to military service, I worked as a magazine distributor. I was hit by a van while doing an errand, leaving me with ataxia.
After this incident, I was not told anything. I didn’t know I had ataxia. I started to notice symptoms and was unable to do my daily activities. I visited the hospital several times and talked to so many different doctors but did not receive a diagnosis. It took them around 3 months to diagnose me. This was a traumatising process for me and during this period, I broke up with my girlfriend and felt very isolated.
I started physiotherapy and eventually accepted this condition because I came to realise that fighting it would be foolish, instead I decided to embrace it. I became friends with ataxia, even though it upsets me at times, we have managed to find common ground.
After my diagnosis, I found it quite difficult to adapt. After a while, I made peace with my ataxia and eventually got used to it. I met friends online and people from this community through Ataxia UK. I do not feel lonely anymore and I no longer care about what people think. The only important thing is my mental and physical health. I distanced myself from all negative things and people. The goal I am currently striving for is to maintain this peace since I felt it delayed the worsening of my condition.
I’m so grateful that Ataxia UK exists. Thanks to Ataxia UK, I’ve felt less lonely and I know that I can always reach out to someone if I need support. Thank you so much. You are doing such an amazing job helping us, and I am so grateful to have found you. Make sure you become a friend of Ataxia UK because it is a welcoming community. I wish I had joined earlier.
My main tip for those newly diagnosed is never to undermine yourself. You are worthy of everything. Don’t let your condition make you feel less capable because you can do whatever you want. I would recommend exercising every day to keep your morale high. Since doing physio, I have seen a massive improvement. I can’t stress enough the importance of getting professional help, talking to a psychologist and valuing your mental health because that is what keeps you on track. Lastly, love the flowers around you, your friends and family, adore this world and find inner peace.
