Living with ataxia as a 16-30 year old...

Our first ataxia:16-30 blog is brought to you by Aila Figura. Aila is 20 and lives in West Sussex, here Aila shares her expererinces.

Four years ago, I dropped out of sixth form due to changing health and the fact that I really didn’t enjoy the subjects - I.T, English language and literature and Psychology. When I started sixth form, I was finding it more and more difficult to walk and it was obvious I wasn’t walking in a straight line. I had been diagnosed with FA a year and a half before, after suddenly losing the ability to write. I tried to be ‘normal’ the rest of my school days, I was so embarrassed to have this weird rare condition, I didn’t want to be different.  I'd walk holding the walls rather than admit I might need some assistance.

I took a year out of education as I wasn’t coming to terms with ataxia well. I'd lost a lot of confidence and as a result was finding it difficult to relate to the other students - I tended to withdraw into a world of my own.  I was quite depressed at this time. A year later I joined a new college called Northbrook in Worthing to study creative media production. I shone throughout this 2 year course, I loved it, being creative is right up my alley and computer technology allowed me a way to do this without needing to have good hand coordination. Doing something that you enjoy really makes a difference.

My tutors were extremely supportive and friendly. Last year I started a Foundation Degree in Photography, because that is a passion of mine. Shortly after I started my tutor from college nominated me for an award for ‘Outstanding Progression to Higher Education’ awarded by FE Sussex, a consortium of further education institutions in Sussex.  The photo is of me receiving my award from the Vice Chancellor of Brighton Uni, who was really friendly and interested in what I planned to do after my education. I was so surprised and delighted when I won, considering all the other nominees, and hey I never win anything!

Winning made me feel proud about carrying on my education despite not being in the best frame of mind. I felt like all my hard work had paid off. There was an award ceremony where all the winners got a gift and a statue; I had to receive them on stage in front of 200 people – I was shaking like a crazy chicken. I’m glad I finally found a passion of mine to keep me motivated.

Now being different is something I embrace. I don’t like following the crowd – I like to do things my way. Like with clothes. My style is different to the mainstream. My mum thinks my style of dressing and decorating my room is a bit 'dark' but that's just me - stylish but with a Gothic twist! I’ve always had a love for photography, growing up I always took snaps on my dad’s Nikon, now I have my very own Nikon! I particularly love fashion and portrait photography, I’ve added a portrait that I took last year of my fellow-student Clem and my self-portrait for my first uni project.

It’d be amazing to do something to do with photography in the future, but my absolute dream is to have my own fashion label, high fashion and high street. Now I’m looking forward to seeing where the future takes me. I'll have to think outside the box a bit because of the challenges presented by my mobility and the fatigue  that goes with FA, but I'm determined to use my dreams and talents, Ataxia or not.


Aila