IT was two years ago that Richard Wheeler’s world plunged suddenly into permanent darkness.
Without warning, he went blind and his life as an average 20- something changed forever.
Diagnosed with a rare incurable condition he is still coming to terms with the devastating hand he has been dealt.
Forced to re-think every aspect of his existence, Richard lost both his job and his independence.
“Losing my sight was like a bereavement,” said the 25-year-old from Winchester. “It was such a massive loss. I’ve not only had to try to get my head around the fact that I will never see the faces of my future girlfriend or children, but the little things are incredibly frustrating too. There are so many things that I can’t do any more.”
It was in 2011 – when Richard was working as a barman at his local Brasserie Blanc – that his previously perfect sight suddenly deteriorated from nowhere.
“At work I could always tell if customers were drinking red or white from the other side of the room by looking for a wine cooler on their table, but I started having to ask for help to do that. I was also experiencing a strange after image, similar to the effect you get after looking at a bright light.”
When his optician couldn’t find anything wrong, Richard was advised to make an appointment at Southampton General’s Eye Unit.
Weeks of tests, MRI scans and Xrays followed, and Richard – who was now on sick leave – was told the probable cause was an inflamed nerve that should get better in a matter of weeks or months.
But his sight was continuing to decline rapidly.
“I was seeing less all the time and my central vision was blurring. It was getting harder to watch TV and I struggled to use my phone. I was getting worried.”
Desperate for more concrete answers, Richard and his parents made a private appointment with a London-based specialist.
Travelling to the capital, after a relatively short examination, he received a crushing diagnosis.
He had Leber’s hereditary optic neuropathy, a condition which affects just one in 25,000 people in Britain.
Destroying the cells in the optic nerve it causes irreparable blindness, and usually affects young men in their twenties.
It was a total shock for Richard whose family had no idea that his mother was a carrier of the genetic disease.
“I knew at that moment that it was never going to get better,” said Richard. “I didn’t want to talk to my parents about it at all. I needed time to adjust.”
Today Richard has lost virtually all of his sight.
“I have one big central blind spot, but it’s not like I can focus on the vision around that. It’s like the snow storm effect on an old TV set or looking through greaseproof paper. I can’t recognise faces and my colours are messed up.”
Richard has never been able to return to his old job and was forced to leave the house he was sharing with friends.
The thought of catching a bus has become a frightening prospect, a short walk to the shops is fraught with danger and simply checking his bank balance has become a real trial.
Now living independently in a city centre flat, he can get around locally on his own – but has to have his wits constantly about him.
“Winchester is great because it’s small and I’ve lived here for a long time so I know it well. But on market days, town can be really quite scary, especially when they’re putting stuff away. There can be poles sticking out of a van at head height.
“Buskers are quite difficult too.
It’s easy to walk straight through their set which doesn’t go down too well!”
When Richard visits the supermarket, he has to ask a shop assistant to guide him round the shelves and he has to rely on other people’s opinions when buying clothes.
A visit to the pub to meet friends always requires careful preplanning.
“Before going in, I will ring my friends and find out which pub they’re in and exactly whereabouts they are inside. When I do finally find them, I can sit down and by the time I’ve worked out who is next to me, they might have moved seats. If I get chatting to new people, I can never find them in a crowd afterwards which is annoying.”
His life on the surface is moving forward, but deep down Richard says he hasn’t dealt with things psychologically.
“I’ve tried to look at it in a logical way but there is a lot of pent up anger and upset that I haven’t really had a chance to release. I talk to my friends all the time but I think I really need to see a professional.
“I went through a particularly low patch earlier this year when everything got on top of me. I struggled to find things to do and stopped showering and shaving. It made me realise that while I feel I have accepted what’s happened, there’s still a lot I need to deal with.”
For Richard one of the most upsetting parts has been that people often don’t actually believe that he is blind.
“To look at me, people can’t see that I’m blind because there’s nothing wrong with my eyes, it’s my optic nerve that is damaged.
There’s no point in wearing glasses because it won’t make any difference.
“Some people are incredibly ignorant. I’ve been on nights-out in Winchester before using my white stick and people have shouted at me, ‘You’re not blind!’ which is awful.
“I’ve had to spend ages trying to convince people that I really am blind and I’ve even had people grabbing my stick off me and accusing me of being a liar.
“Then there are the times I’ve waited at the side of the road for ten minutes before trying to cross and people have walked straight past and ignored me because they don’t realise I’m blind.”
Richard is now working with Fixers, the national movement of young people ‘fixing’ the future, to raise awareness of different types of sight loss.
He plans to visit local schools to hold workshops to share his message with primary-aged pupils.
Fixers is a Winchester-based charity which supports thousands of young people across the UK to take action and change things for the better, addressing any issue they feel strongly about.
How each Fixer tackles an issue is up to them – as long as they benefit someone else.
“Through Fixers, I want to educate the younger generation so they don’t grow up with the same misconceptions that many adults have.
“Fixers is a great platform and I very much doubt I would get the chance to do anything like this without them.”
Looking ahead, the future looks bright for Richard.
A major turning point came when Richard attended the RNIB College in Loughborough last year.
He did so well that he was awarded the Young Adult Learner Regional Award South East – his proudest achievement, he says, to date.
“I’m the sort of person who will keep fighting and moving forward whatever comes my way. I’m determined to make the most of my life and I want to help others along the way.”
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