Here a blog post from our Friend, Laura, in support of this year’s International Ataxia Awareness Day.
I don’t expect many people to know that the 25th of September is International Ataxia Awareness Day- I don’t think I’ve met a single person who has heard of ataxia before (unless they were a health professional to do with ataxia or someone who I’ve met through Ataxia UK). A lack of ataxia awareness makes life so much more difficult for people who are affected by the condition. People assume we’re drunk, or even if they do realise that it’s a disability then no one realises the true impact on our lives. Friends and family etc are just as affected by the lack of awareness, as they constantly have to deal with the backlash from a lack of help, defend us from ignorant people, do things for us that are too difficult or too traumatic for us to do ourselves… I’m very lucky because no matter how hard I’m finding life; I have friends and family who stand up for me when I can’t stand up for myself (figuratively and literally).
Over the summer I passed my driving test- yay! A big achievement for anyone, but it seems like so much more of an achievement for me. I remember telling my teacher before my first lesson that I was terrified- I thought that I was going to get in the car and realise I couldn’t do it. It took two years of lessons, three failed attempts, several tears, very determined parents
and an instructor, but finally I’ve passed. Ataxia definitely made things harder- coordinating steering and manoeuvres took a lot longer to get a hang of (thank you very much to my instructor and my mum for staying patient with me), and I learnt in an automatic car so the coordination could be simplified- but no matter what happens, ataxia can never take away from me the fact that I passed my driving test.
It’s completely unknown what exact type of cerebellar ataxia I have, what caused it, why it was triggered when it was, or how I’ll progress in the future. A lot of people don’t fully understand that having a disability/chronic illness is scary. I never know how I’m going to feel in 10 minutes time, let alone a week later, and I don’t even know whether or not I’ll still be able to walk independently by the time I graduate university. My mindset used to be that there’s no point trying anything new out or even enjoying life because one day I probably won’t be able to- I’ll just be more upset when I can no longer do it. What a terrible way of thinking! Yes, maybe one day I won’t be able to do a lot that I can now, but as of at the moment I can do it, so why shouldn’t I allow myself to enjoy everything life offers?
Trying out new things and accomplishments that may seem small to others, mean the world to me. A lot of the time misunderstanding about my disability means that I’m either too much or not enough. I used to be so ashamed of anyone knowing my struggle, but now I realise that it’s nothing to be ashamed of. I want people to see me and my disability. I want people to know the strength it takes to push through the fear and the physical symptoms so that I can show everyone that I’m always enough and never too much. I control my disability; my disability does not control me.
It would be incredible if I could say the word ‘ataxia’ to someone and they instantly know what I mean. Only about 10,000 people in the UK have been diagnosed with ataxia, but that’s still 10,000 people. And for each of those 10,000 people, is a network of family and friends who are also affected by the absence of knowledge, numerous health professionals who are overwhelmed by the rarity, and a lifetime of being misunderstood and overlooked. If everyone who knew about ataxia spread the word and told at least one other person, word could spread, and ataxia could be on its way to the recognition that it deserves.
For the first couple of years after I developed ataxia, I would say that I’d give anything. I wouldn’t give anything. Saying that I’d give anything is saying that I’d give up the pride I feel when I do ‘normal’ activities, I’d give up the family and friends and support network who mean the world to me, and I’d give up the experiences that mean more to me than they would to another person. I wouldn’t give that up. I’d love to have the ability to live life without ataxia, but that’s not going to change. I no longer want to change myself, I actually quite like myself. And nothing that anyone who doesn’t understand says is ever going to change that.
