I’m Adam, I’m from Liverpool and I was diagnosed with Friedreich’s Ataxia in December 2009, aged 15. This was after spending a few years confused as to why I couldn’t physically do things my friends were doing and just generally feeling like I didn’t belong in this world, I’m sure a few of you can relate to that.

 

For that reason, I saw my diagnosis as a bit of a relief. Finally, there was an explanation. I wasn’t just doing things wrong. Well, I sort of was, but now I had a reason! Obviously it was still a shock and very hard to take, I won’t try to sugar-coat that. Being told I would soon be wheelchair-reliant, which I now am most of the time, scared the hell out of me. I shouldn’t have been scared; using a wheelchair has improved my life so much. It’s all about adapting, a concept I really struggled with at first, and still do at times. But it’s fine to struggle sometimes. I spent the first few years after my diagnosis wishing my condition away. I couldn’t focus at school, with my motivation to achieve good grades completely gone, eventually dropping out midway through my A-levels.

In the years since then, I’ve realised that I have a right to live as full a life as any other person. I have a future. In November 2012, aged 18, I braved moving out of my parents’ house and got my own flat – where I still live independently in today. I wanted to have the chance to do things myself while I could, afraid I would fall into a state of over-reliance on my parents if I didn’t do it. Last September, buoyed by my sense of independence, I went to college to do an access to higher education course in social science (Psychology, Sociology and Criminology) and now find myself preparing to start university later this year! It’s something I could never have imagined a couple of years ago. 

Anyway, enough about me. I just wanted to share a few bits of wisdom I always go back to when I’m having a wobble (metaphorically and literally!). Some are stolen from ‘The Rules of Life’ by Richard Templar, a self-improvement book I’d definitely recommend; others have come from counselling sessions I’ve had; and some have sprouted from my own little brain, believe it or not.

 

  • Accept your condition – Three relatively simple words, but something I’ve found so tough to do. Believe me though, when you do this, your life will open up. No doubts, insecurity or worrying about what others think. Don’t get me wrong, when I say accept your condition, I don’t mean roll over and let it take hold; instead, face everything with determination, ask for help when you need it, and don’t waste your time focussing on your limitations.

 

  • Do your best – Again, three simple words which can make such a big difference. Whatever your best is, do it. People will love you. And you will love yourself (in a good way).

 

  • Challenge yourself – Like I mentioned above, in the first few years after my diagnosis I sort of gave up. Everything seemed boring to me. I realised I wasn’t getting out and challenging myself. If you fail, at least you tried. Your sense of satisfaction will overpower the feeling of failure.

 

  • Appreciate the small things – Today I was hung-over. As soon as I managed to roll out of bed, I had a cup of tea. It was incredible and my tea basically seemed like a magic potion. The more thankful you are of the small things in life, the easier it will be for you to be happy.

 

  • Why be the same as everyone else? – We have a condition which means we may move and talk slightly different to most other people. So what? It makes us special, in a good way, and helps us get noticed! Being the same is boring.

 

  • With adversity comes opportunity – I love this saying. We’ve been handed a challenge, and by fighting we can open up so many doors. We’re lucky.

 

  • Have perspective – It’s a cliché, but the reason clichés are clichés is because they make a lot of sense. We may have a debilitating condition, but at least we’re not constantly worrying about where our next meal is coming from. Or we haven’t been forced to leave our homes due to it being in the midst of a warzone. Well, I hope neither of these apply to you! There are millions of people out there struggling, remember that.

 

  • Without lows, the highs wouldn’t seem as high – “Everything happens for a reason” is so cheesy isn’t it? But I’m sort of saying it here. Whenever you’re having a bad day, think back to this. You WILL get through it, and you’ll appreciate the good days more because of it.

 

  • Don’t envy others, focus on yourself – This is something I find so difficult, especially in this age of social media. Facebook, Twitter, Instagram and the like are full of people telling you how good their lives are. It’s so easy to fall into the ‘why me?’ mind-set and get horribly jealous. But they have issues too – no depiction of a person’s life through their social media account is completely true. Don’t worry about them; be yourself and be the best person you can be.

One more thing, we’ve just got an Ataxia Support Group up and running in Liverpool. Meetings are held on the first Saturday of every month, and it looks as though it could be a success, as numbers have grown in each meeting. It’s a great opportunity to meet up and share your experiences with other Ataxians in person. Meeting people there who I can relate to has been huge for me. All ages are welcome. Even if you live a way off and wouldn’t be able to travel to the meetings, please join our Facebook group and get involved – search ‘North West Ataxia Support Group’. If you have any queries, feel free to add me and drop me a message.

Adam Griffies.