Patient Perspective on Brain Health Series

My Story – Constant Reinvention

by Brona Kearney

I have a rare disease called Friedreich’s Ataxia (FA) which is progressive neurological condition. I was diagnosed with FA 24 years ago, therefore I have progressed a lot in those years. I have gone running to walking wobblily to using a walker to using a manual wheelchair to using an electric wheelchair. All this while my upper limbs also let me down, and my speech and hearing began to find it hard.

All this progression and disability makes you grateful for what you can do. It has meant every task I do is huge and it makes the simplest activities, adventures, as you never know how your body will respond or what aids or help you may need. It is shit at times but it is also freeing to see how you adapt and reinvent yourself. It also nice to know you won’t be struck with the same old same (in hindsight) but it takes a while to realise this.

I am currently (or should I say always) reinventing myself. From the time I was young I was told you have to go to school, get an education so you could get a job. So I did this, I went to school but things weren’t always easy as my disability made writing, carrying a school bag, walking around with friends, etc difficult but I re-invented how I do things and I managed to do it. This was the same with University but again I managed.

After University is when reinvention really started to happen all the time weather it was deciding to drive, where to work, do I actually like the work, do I want that promotion, etc. without the safety net of Mom and dad every decision feel huge as it does for everyone. When you have a progressive disability every decision multiples and how you reinvent yourself one day mayhap to be flipped on its head the next.

For me I got a job and disability adaptions done but as I got promoted my job role changed and I had to reinvent how I do things until my disability pulled me up short and said “this re invention isn’t working”. So I tried to back to my old job but my body wasn’t able for that either.

This has lead me to now, retired in my thirties, wondering what I would like to do or spend time on. I could be angry and upset over everything (and I was for a time) but now I see this is my chance to experience more and find out what I like.

I don’t know the reinvention yet but I do know this is an opportunity to see what mark I want to leave in the world.