Laura Bishop is 25 and was diagnosed with Friedreich’s ataxia ten years ago. Having dealt with the difficulty of facing the condition as a teenager and the trauma of two serious operations, Laura has come to terms with her ataxia, but is still fearful about what the future will hold…
“Over the last ten years Friedreich’s ataxia has taken so much away from me and not given much back. I don’t have Stockholm syndrome where I love my captor, definitely not. But I think, I have somehow made peace with it. When I think about how much my ataxia has progressed in the last ten years, it kind of terrifies me to think where I’ll be in another ten years.
My diagnosis
I was diagnosed when I was fifteen years old. Being a young teenager is a scary time anyway, without the added concern that you have a genetic, progressive condition. By the time I was eventually diagnosed, my balance and coordination were already pretty messed up and I began to use a wheelchair for long distances at the age of 17/18.
For a long time, I was in denial and didn’t want to accept my condition. I was fully aware that my body was regressing and certain tasks were becoming increasingly hard. In my head though, if I didn’t accept it, it wasn’t happening. I also thought that the progression of Friedreich’s ataxia wouldn’t happen to me. I was wrong, of course.
Traumatic treatments
In 2012 at the age of 21, I endured a spinal fusion (where bones in the spine are joined to add stability), I was miserable for months afterwards but it was a success and I made a full recovery. It was one of the worst experiences I have ever had but it definitely improved my life. I also have cardiomyopathy (affecting the heart’s muscular strength) but have always had an annual heart checkup and been told that my heart was stable. However, in 2016, my annual 24-hour heart monitor showed that my heart stopped beating for seven seconds, so they decided to implant an emergency pacemaker. I was miserable for months after, again. I felt like FA had tried to kill me; it set me back and even made me depressed. Now, over a year on, I am in a much better place mentally.
Today and tomorrow
Throughout the past ten years I’ve grown so much. I fully accept FA now and know what my future may hold. A huge part of this acceptance is down to my support network. My friends are like gold dust and I don’t think they realise how grateful I am for everything they do, and have done, for me. My family are understanding and always there for me, most importantly my mum, who I am really close with. Finally, all the friends I have with FA: my FAmily. I can’t begin to explain how amazing it is to know and talk to people experiencing exactly the same thing as you. Living with FA can be a really dark and lonely place sometimes, to always have someone to talk to that can relate to whatever FA throws at you, really is comforting.
I’ve heard it said that “We cannot change the cards we are dealt, just how we play the hand” so now it’s just about living my life the way that I want to. I have travelled quite a bit, I paint and I write. I don’t want to have any regrets and I don’t think anyone should really, because you did exactly what you wanted to at that time.”
