I was diagnosed with Friedreich’s Ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 47.
This month, my amazing friends organised a gala ball in aid of FARA Ireland, which is coming up this Saturday.
My psychotherapist told me that I am quite happy to share a nice photo, but I do not want people to see the reality of me struggling to walk or having slurred speech, and I think she is right. Hence, I am super nervous, because all of a sudden there will be 250 friends and family in one room. But it will be a great night.
I just wanted to share something that I found fascinating. I asked my neuro physio, who was amazing, why I was so bad at walking in the dark. He told me that people with FA have diminished proprioception, no, I had not heard of it either. This means being aware of where your body is in space, how bent your knees are, where your feet are, etc. In the dark, people who do not have FA can rely on proprioception. We rely more on vision, so in the dark, with limited vision, we struggle more. I just thought it was interesting.
By the way, I know the title is “Don’t Leave Me in the Dark”, but I enjoy being on my own. Somebody said, “Don’t confuse solitude with loneliness.” I am not lonely. I am content in my own company and always have been. Thankfully.
