My words come out much more easily when they are written rather than spoken. I have a lot to say—things I want to shout as loudly as I can—but instead, I stay silent. If I have my laptop in these moments, I’ll type pages and pages until every word inside me is out. People might find it strange that I appear so confident when writing blogs that are potentially seen by so many people online whom I don’t know, but talking about my opinions to a small group of people I know well is too scary.
As I’m writing this, today is Rare Disease Day. This day feels very important to me, as it is the one day a year that celebrates and brings awareness to the many diseases and disabilities that are generally not given the recognition they deserve. People whom Rare Disease Day focuses on have so many strengths alongside the weaknesses and challenges that their conditions bring, and that deserves to always be celebrated and recognised.
Ataxia has made writing my greatest strength, as I have learned to use my words in such a way that allows me to advocate for myself. I have also become an expert at boxes. I have never met a form that accommodates Cerebellar Ataxia into its neat little boxes dictated by society. I have adapted to weave in the spaces between these boxes and decide which aspects of my identity can fit into the expectation. But there never seems to be quite enough room for the ‘abnormalities’ that are never seen. The world wants those who are rare and unique to hide themselves behind the mask of ‘normality’ and try not to be too ‘weird.’ I don’t want to be society’s expectation. I will be as ‘abnormal’ and ‘weird’ as I want, because my rareness is what makes me unique—and that is my strength. I hope that one day the expectation can change and everyone will see that their uniqueness is their strength.
It’s funny that writing is my strength when it is also one of my biggest challenges. My cerebellum really doesn’t like handwriting, which makes expressing myself very difficult if my laptop isn’t nearby. It’s important that people know the challenges of my condition unfortunately impact every aspect of my life all the time, no matter how confident I may come across on the page. In the moments when Ataxia’s challenges are too great, I’m so lucky to have people in my life who speak up for me when I can’t speak up for myself. Everyone deserves that; everyone deserves a voice all year round, not just on Rare Disease Day.
I want my writing to bring more awareness to Rare Disease Day and to all the incredible people affected by it.
