Our friend, Laura, has kindly shared her ataxia journey with us and wrote a little about the importance of acceptance.
Hi, I’m Laura. I’m 19 and in my first year of university, studying psychology.
I was diagnosed two years ago with familial Cerebellar ataxia. I did not truly realise how difficult it is to live with ataxia until I developed it at 16 and my body was replaced with a new one. I’d grown up knowing about ataxia as my dad also has cerebellar ataxia. He’s the bravest person I know, but I never thought I’d have ataxia and have to be brave like him. Until 8 months ago, I thought ataxia ruined my life, but it hasn’t, life is simply different.
I love swimming; it’s my relaxation as well as exercise. I do Pilates most weeks and go to the gym. I went on a climbing wall recently, and I’d love to do it again sometime! I also enjoy going for walks. Fatigue makes it difficult to go for long walks, but I enjoy them.
I also enjoy baking, as well as art and being creative. Spending time with my family and friends is my absolute favourite thing; I also love animals (especially my pets).
Ataxia can make it difficult to do things I enjoy. On days when I can’t do very much, I have incredibly supportive friends and family who are happy to stay in and watch a film with me or something instead of going out.
Very few people understand how hard it is to navigate living with ataxia, and even fewer understand that it’s something that affects you every second of your life – it isn’t something you can just turn off for a bit. The way ataxia makes you feel a lot of the time is almost impossible to explain, so the response of “I’m fine” just becomes automatic. I’ve gotten used to people having blank looks on their faces when they hear the words ‘Cerebellar ataxia’; they don’t know how to react or even what it is. Developing ataxia is really like learning to live with a new body – one that hurts and is tired all the time, one that suddenly struggles to do so many simple things, and one that no longer runs, jumps, and does all the things that you used to enjoy doing.
Not knowing how my condition will progress means that I’m often scared about the future. I regret opportunities I didn’t take or decisions that I made in the past because of how I felt about ataxia or not knowing that I would develop it. What happens in the future happens, and you can’t go back and change the past. Don’t miss out on life because of what you previously could have done differently or your fear of the future. Someone taught me while I was at school that I should live in the moment. I still worry about the past/future a lot, but not as much since I’ve learned to focus on the present.
For too long, I feared anyone knowing that I had ataxia, so I would never ask for help. It’s still scary, but I’m slowly getting better at asking for help, and it makes life a lot easier.
Balancing ataxia with living life how I want sometimes seems impossible, but I’m trying to learn to listen to my body and let myself rest when I need it. I’m not always very good at it, but I’m so much better than I was not long ago.
Learning to accept having an incurable condition that’s incredibly rare is something that no one can really teach you. Support from friends, family, teachers etc. – anyone who accepts and supports you for who you are means so much than they could ever know. Because I am so much more than just ataxia, just because I have ataxia doesn’t mean that ataxia has me.
I had incredible support in sixth form, and I was given so much advice that I would not take it at the time – I decided it would not work before even trying. I can’t thank those people enough for everything they did for me, and I could go on forever about how much their support meant to me. Now I’m taking that advice, and I wish I had sooner.
I have now realised that there will never be a time where I will know exactly how to live with ataxia. Acceptance and learning to manage it come in small steps, not a huge leap. Writing this, a part of me is thinking, who am I to be talking about acceptance? I have hardly figured it all out. I’m already several steps higher than I was a few months ago. I wish I could go back a couple of years and tell myself that life is not over.
