Length of time you have lived with LHON
Diagnosed in November 2011
I was studying Aeronautical Engineering in my second year at the University of Bristol when I started to lose some vision in my left eye. I was diagnosed with LHON only two months later and had to work out how to navigate the rest of my University career with a disability.
My twin brother had lost his sight 18 months prior to my diagnosis and this meant I knew the full ramifications of what was in store for me in the coming months. The first year was tough for me psychologically but I was determined to stay at university and pursue my goals and ambitions; not letting something out of my hands determine the path of my life. I negotiated that my third year at university was very limited in terms of contact hours but this allowed me to hone my skills in being a visually impaired individual. Applying for entitlements such as support workers, extra time in assignments and using the disabled Students Allowance was all new but was all there to be fully implemented.
My brother and I were lucky to have each other as support sources going through sight loss and with the help of Blind in Business in London began to gain confidence in life again. We both decided to cycle to Amsterdam in a bid to raise money for others in our situation and in April 2012 through the help of a media storm managed to raise £30,000 for our cause.
My fourth year at University was very intense and my attention started to turn to graduate schemes and gaining meaningful employment after university. I started to discover some of the barriers of entry that face the disabled whilst seeking a job and at times some of the knockbacks were difficult to take. Through perseverance and lots of administration I managed to put reasonable adjustments in place for interviews and assessment centres. I worked hard on honing my interview skills and employability regardless of disability and was offered two graduate schemes within Finance in London.
Having been in work for a little over two years now, I have a full suite of support at my desk. Access to Work have funded assistive technology for my computer as well as a support worker who helps me with administrative and the more visual tasks at work for 2 days a week. The fact that I have little to no usable vision but am still able to carry out tasks as any other graduate would has helped I hope disband some lingering perceptions of the disabled in society that persist when I meet new people.
I genuinely feel that life just diverts onto a different path on diagnosis day and whilst many doors slam shut; many different doors open at the same time. I live an independent life and am able to travel and socialise as any of my peers might do and enjoy going to the gym, travelling and playing VI football most weekends. I’ve come to take part in fantastic experiences due to sight loss and I believe my life has become richer as a result.
All people have their Anus horribilis at some point in life and mine has come early on but it is how one reacts to it to come back stronger which defines rehabilitation. Whilst sight loss is terrifying and horrific at times, it doesn’t mean you can’t shower it in glitter and accept that this grey fuzziness is the new reality; when life gives you lemons you just have to make lemonade.