Ewa Błońska has spinocerebellar ataxia type 1 (SCA), which runs in her family, so she already had her diagnosis before having had any symptoms. Ewa used to be ashamed of having ataxia, but now she knows that you can still achieve and experience many other beautiful things in life. She also designs some cool clothing and accessories in her free time!
I was diagnosed at the age of 30 but I had no symptoms at the time. I just wanted to know. My family had ataxia before, and I was “lucky” to be diagnosed with type 1 ataxia right away. In the 3 years that passed, I began to show slight signs of the disorder. Sometimes I wonder if it’s good that I knew before, but I guess that yes, it is good. I had time to prepare for it. Apart from me, my cousin and my brother also have ataxia in the family. He doesn’t want to be tested. And she has the same ataxia type as me.
There was a time when I was working as a therapist with disabled children. However, I decided to do something else and became interested in computer graphics. What I am doing now is quite specific, but ataxia still allows me to work. I make computer games but for equipment called eye-tracker and intended for people with disorders. So not much has changed since I have a diagnosis. I work slower and need more time to write back or draw something, but I’m still active. I have my own business and I work from home – that has not changed.
Every day I spend my time exercising and try to keep in good shape – in the physical one, but I also try to speak fluently. It is known that this changes under the influence of ataxia, but I have found that exercise daily gives a lot. I find it helps to stay in touch with others. It is not always possible to meet, but even talking on the phone or the Internet is great.
Living with ataxia, I learned that I shouldn’t be ashamed of it. I also learned to ask for help openly. People are very kind and if they know-how, they want to be close and they want to help. I am very honest and speak openly about how I feel. I know it can be aggravating for some people, so I try to convince them that ataxia is not the end of the world. Sometimes it is hard for me to believe it myself, but that’s the way it is, you can still achieve and experience many other beautiful things in life, even with ataxia.
I always try to be honest and tell others what I feel and what I need. I think it is very important. All my friends know about my ataxia and I am open to discuss it with them. However, I emphasize that this is not an easy experience.
At first, I was ashamed of my ataxia. I wasn’t ready to talk about it. I needed time to accept the diagnosis. I saw my mother having ataxia, that’s why I was afraid that it would also be like that with me. Recently, however, I started writing publicly about my emotions and experiences. I can see that for some people it is important. There are discussions and confessions from disabled people under each published post. I am very happy that others are opening up. It seems to me that only a drug can make ataxia go away, but that doesn’t mean we cannot be happy before that happens. Living with ataxia is bloody hard, and it’s worth looking for ways to survive it somehow.
Recently, I started a blog where I describe not only what happens to me but also what I feel. And not so long ago, it seemed to me that I would not admit to my illness in public and that I was trying to hide it. It seems to me that everything takes time. There are great things that can overwhelm us, and maybe we’re just not ready for something yet. It’s worth giving yourself some time, a little understanding. Now, something may seem impossible to overcome, but maybe in some time, we will approach it with approval.
Big thanks to Ewa Błońska for being so open about her experience with ataxia!
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