I wrote this as a guest article for Ataxia UK volunteer magazine, however due to my own weird personal circumstances at the time, I requested that they did not use it and it has been sitting in my files ever since. Upon rereading it I actually quite like it and I have decided to publish it on my blog, I hope you like it too and perhaps it will raise a little bit of awareness.
Being born in the 80's meant that being misdiagnosed was common due to lack of genome testing and specialist knowledge. I went through several incorrect diagnosis' before I was given the correct one at age 7. Friedreich's Ataxia (FA).
Having FA means that every day is a constant battle between my brain and my physical body.
My brain is a motivated, energetic geek who just wants a good life.
My body is a tired, weak, depressed stoner with constant brain fog.
My personal war between brain and body has been waging for just over 42 years and I am pleased to say that despite it getting increasingly difficult, my brain is still winning, even if sometimes just by a small margin. Still winning...right?
Something I did not have while I was growing up is knowledge of the available support of the ataxia community. I knew that Ataxia UK existed but it was not in the way it does now.
I was overjoyed to discover its support during lockdown in 2020, its weekly activities were a lifeline for me when I was scared and shielding.
I now volunteer as a befriender which is a rewarding experience.
Being able to support someone while they battle their own Ataxia is priceless. Not only could a bit of understanding and support make a huge positive difference in the life of the person you are befriending but it also gives me a sense of achievement and friendship.
Disability takes a lot of abilities away but if just showing up and being a listening ear enables someone to continue their fight, then it's time well spent. Bring it on!
Since my retirement from paid employment about 12 years ago, due to my disability, I have volunteered for many things. At the moment I am very happy with my befriending and volunteering as a crisis mental health supporter for SHOUT.
