Monday, 4 June 2018
Blogpost for Ataxia UK
ADAPTING TO MY DIAGNOSIS AND CHOOSING TO INCORPORATE IT INTO MY NEW PERFORMANCE
After genetic testing, I was diagnosed with SCA17 after genetic testing, in March last year. I have been coming to terms with my diagnosis since then and going through fear (I am 59- a fact sheet informed me that SCA17 people rarely live beyond 60) to acceptance to action.’Its best to deny you diagnosis’ a friend erroneously advised.There were various Ataxia FB groups I joined - its good to be in touch with other who are going through some of the same things. As it is degenerative and currently there is no cure, then Ataxia in all its forms is understandably depressing.
For me coming to terms with my diagnosis has been about maintaining mental balance even on bad days and staying buoyant in my spirits and physiology.
There are many stories of humour and bravery by Ataxians but understandably, a depressive energy sometimes surfaces on those forums.There is sometimes an expectation that doctors will deliver a miracle cure and meanwhile, Ataxians are told to exercise and diet. That is treatment as much as any drug or expert advice. The only way I can come to terms with this dreadful diagnosis is to accept it and self manage in collaboration with the doctors. Even if the doctors know more facts, the Ataxian has to deal day to day with its effects. You and the doctors both are experts, so is your family or anyone who knows you and helps. Its a collaboration but you, the Ataxian has to deal with it. Live with it but don’t let it stop you living your life. If you are prescribed exercise and diet as the best thing for you -yes thats treatment! go for it! Its likely to be better physically and psychologically than waiting helplessly for a miracle drug to come along. That may or may not be going to happen— if it does its wonderful - but it doesn’t seem wise to rely on something that isn’t there yet. Learning to stay buoyant and optimistic on bad days is treatment. Anything that makes your situation more bearable is treatment.
Making a new show has been part of my way of coping with my situation. I have been wanting to do this for a long time. My diagnosis with Ataxia meant I’d better make it soon while I still can.This is just my story; everyone with Ataxia will have their own story to tell; of how their Ataxia develops, how they coped, how their family and loved ones coped, how they adapted, denied or whatever. Although their are similarities of symptoms across the range of Ataxians, no -one’s stories are the same, and everyone needs to be heard. I am lucky, in that my case is milder than some and I am able to articulate my experience and put it into a show, but remember that every Ataxian, however ill they are, those unable to speak, those whose condition has made it harder to communicate, have as rich particular, funny, varied and personal story to tell.