Meet Marina Lewycka who resides in South Yorkshire, England. Before symptoms began, she had already retired from her career and began another one. Now she is a best-selling author.
I had my first symptoms of Ataxia at 71 and I am now 73. In that short time, it has progressed rapidly, so I am very anxious about where or when it will end. Especially as I have no diagnosis yet, I can see from the scan that something is wrong with my cerebellum. To have a diagnosis would allow me to plan for the future.
I was a University lecturer in Journalism and PR and I loved to walk in the Peak District (England), garden and swim. I took retirement when I was 65, and I started out by writing about my crazy Ukrainian family. I had written a novel A Short History of Tractors in Ukrainian which became a best-seller in the UK. The hardest thing most writers face is not the writing, it’s getting published. It’s a lottery – there is no formula that guaranteed success. I was very lucky.
Since then I have written five more, not bestsellers but it was satisfying to take up writing so late in life. I have not written about ataxia yet, but in my next novel, one of the characters will have ataxia. It lends itself well to comedy. Ataxia has not affected my ability to think up stories, but I have become more somber in tone – I used to be thought of as a comic writer. Of course, it makes typing the novel up much slower as I hit so many wrong keys. My disability has made me realize how lucky I have been to get it so late in life, so I probably won’t have to live with it for very long. I have tended to be rather shy about speaking up about Ataxia, but I realized that unless people speak up, we will remain invisible.
I always tell people, talk to your parents and grandparents. Find out how they met. Find out about your genetic inheritance and your cultural inheritance. A tape-recorder can come in handy if you don’t do shorthand.
Thank you, Marina Lewycka for sharing your story and reminding us that speaking out is imperative to be visible!