At 38 years old , Cerebellar Ataxia gave me no choice. Since the neurological disease is genetically pre disposed due to it’s hereditary DNA – the generations before my birth are responsible for its movement through my family. This is not a critical judgement of the generations before me – it’s just a fact !
The decision of my opera house employers labeled me as a genuine threat to other people on stage. The doctors and neurologists were telling me to change my profession and retrain for something else. But what ! They couldn’t say !
Call it karma or the luck of the lottery! But if you know anything about the disease, you wouldn’t choose to be connected to it yourself. 25-30 million people worldwide have some form of Ataxia that affects their lives. Being one of the millions of others also affected by this rare, incurable neurological disease, I have spent most of my lifetime trying to cope with the progressive nature of the disorder . It has been a necessary learning experience but I have managed to cope with the situation.
My type of cerebellar ataxia is Spino Cerebellar Ataxia type 6. Having this neurological disease is NOT something I would chose on my own. It was thrust upon my sister and me by my parents who made the uninformed decision to have children and carry on its hereditary DNA. Research wasn’t so knowledgeable as it is today. My sister made the informed decision, knowingly, to have children. So the hereditary nature of the Ataxia might go on with her. That was her decision!
I on the other hand – decided NOT to have children. So with me the buck stops here. You do have a choice ! My DNA gave me this condition of Cerebellar Ataxia. But having it has given me a first hand perspective of the neurological disease so that I may inform people about Cerebellar Ataxia in the future.
The Ataxia awareness website : https://miracle-answer.org. gives people an informed tool to cope with the situation.