Post date: 
Tuesday, 21 November 2017
Headshot of Simon wearing glasses

Simon Feeney did well in school, obtained a degree and enjoys a successful career – just don’t mention his nystagmus.

My name is Simon Feeney and I am 35 years old. I have congenital nystagmus and ocular albinism. I was told from a young age that I would have to work twice as hard as other people to succeed in life, because I would never do such things as drive, be good at sport, or even ride a bike.
In my younger days I used to visit the hospital at regular intervals, but I was discharged at six years old. From then on, I had a specialist visit me at school instead. During school I had a line reader magnifying glass and my own book, as opposed to sharing. I wrote on specially made thick lined paper and photocopies were blown up to A3 for me.

Aiming high

In high school I started off in one of the lower classes, but still the words I’d been told my whole life echoed in my ears: “You’ll have to work twice as hard as everyone else,” and that’s what I did.
I did extra assignments, practised writing on "normal" lined paper, and in the second year my hard work paid off – I was promoted to a higher class. I never looked back. I gained 10 GCSEs, earned an award at college for the highest grades in the county, a degree in Mechanical Engineering, and several other qualifications during my career. 
In 2005, I was accepted on the graduate programme at M W Kellogg, a major oil and gas company. My nystagmus never really affected me during this period. I used a lot of spreadsheets and databases and found it easy to compensate for any shortcomings created by my condition with the use of zoom and colour-coded columns and rows.

My career

Eight months into the graduate scheme, I was sent on assignment to Paris on a huge project to construct a two-train LNG plant in Yemen.
After Paris, I moved to Yemen with the project. The biggest challenge in Yemen was the sunshine, which tested my ocular albinism to the limit. But once I learned to adapt, it was fine (factor 50 sun cream and wearing a cap is not a major hardship). I was in Yemen for two-and-a-half years, and after that I worked in London, Scotland and Saudi Arabia. On top of this, I was also on the board of the Young Professionals Committee at work, and gave a presentation to school kids at Reading University about my career.
My next role was in retail. As with other challenges in my life, I adapted, and within my 11 months there, I had won two awards for my attitude and accomplishments.
I am now back in the energy industry and working as a cost engineer on the construction of a multi-billion pound nuclear power plant in Somerset. My role entails monitoring and reporting costs, forecasting and handling changes to the project.
Outside of work, I am a keen runner, culminating in my third marathon in May 2017. I also like travelling and photography. I have a wonderful collection of photos from around the world including, the sunset in Adelaide, Niagara Falls from a helicopter, the Berlin Wall and the Louvre. 

This is me

Whilst I’ve obviously always had an association with nystagmus, and was a member of the Nystagmus Network charity for many years, I do at times feel isolated from online groups and forums. Far too often I see posts that are caveated with “despite having nystagmus,” and I just can’t endorse that.
When I have reiterated these feelings, I am met with “not understanding” and “being one of the lucky ones”. While I accept that there are people with nystagmus far worse than mine, there are also people with far less.
I really do not class myself as “lucky,” I’m not. I can’t drive and have many others challenges to overcome daily resulting from my nystagmus.
But I just prefer to focus on what I can do, rather than what I can’t. I am just someone who tends to look for solutions rather than excuses.
I feel humbled to have been approached to write this article as I don’t think my story is anything special. And, if people do take inspiration from reading about my life, that’s great. I just hope they take my achievements, however big or small, for what they are, and don’t caveat them with “despite having nystagmus”.

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