Man who lost eyesight achieves dream of attending The Open at Portrush
As calls to the RNIB's helpline from people seeking emotional support are expected to triple this year, Stephanie Bell talks to Bangor man Ken Carson about what it was like to lose his sight and why he's passionate about helping others
A local golf fan who has recently had to come to terms with going blind proved that life can still be enjoyed to the full when he took his place among the spectators yesterday at The Open Championship in Portrush.
Ken Carson might not have been able to see his idols but it didn't stop him soaking up every second of the electric atmosphere at the biggest sporting event that has ever been hosted on these shores.
Forced to come to terms with losing his sight over the past five years has understandably hit the 53-year-old Bangor man hard, but Ken has learned how to make the most of life and is now inspiring other visually impaired people to do the same.
His story is shared as the Royal National Institute of Blind (RNIB) warns that calls to its helpline from people seeking emotional support are set to triple by the end of 2019.
The charity's helpline received an astonishing 250,000 calls during 2018, dealing with a range of issues from emotional support to employment, benefits, education, legal rights and technology.
Questions around emotional support are one of the top three reasons why people spoke to the advice line in 2018 and are expected to remain in the top three for 2019.
In fact, the charity expects calls focusing on emotional support are set to triple from 2,021 in 2016 to a projected 7,000 calls this year.
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With more than 2,000 people being diagnosed with sight loss each year in Northern Ireland, it has become a vital service.
Ken Carson feels indebted to the charity for the support he received while struggling to come to terms with his sight loss five years ago.
Now a volunteer with the RNIB, helping to mentor others, he was unfortunate to be diagnosed with a rare condition, optic neuritis, which causes progressive deterioration of the sight.
Ken describes what he came through as like a grieving process. "I've always known my eyesight would deteriorate gradually, but when reality kicked in that I was really losing my eyesight, I became quite low and depressed," he says.
"I got in touch with RNIB for some advice on work initially and their advisers also suggested I go on one of their confidence building programmes.
"I went into the programme feeling down and full of anxiety.
"You think that's it, it's over, I'm not going to be able to do this, that and the other. The course was a life-changer for me. It opened so many doors. I dread to think where I might be now without it.
"We need to not bottle things up and stop thinking that talking about our feelings and struggles or reaching out for help is a weakness. I actually think it takes more courage to talk.
"Some people need help to come to an acceptance of the sight they've lost. It's like a grieving process, and you don't get fixed overnight. You need support to work through things."
Ken worked for 31 years in the education department of the Civil Service, where he met his wife Joanne (52), also a civil servant. The couple have a daughter, Jan, who is 19.
It was 18 years ago when he first realised all was not well with his vision. He visited his local optician who referred him immediately to a consultant.
He says: "For the next 15 years I had all sorts of tests and was constantly monitored.
"It is a very rare condition and it took some years for them to diagnose it. It is usually caused by a physical trauma and the only thing which the medical staff think could have caused it was an accident I had in 1996 while playing five-a-side football.
"I slipped and banged my head and was concussed. I was off work for a week but I had head scans which were clear.
"The only way I can describe the condition is that you have a rope which attaches your eye to your brain and over the years mine has got more and more frayed as time went on and this has made my eyesight get weaker and weaker."
No one was able to tell Ken at what rate his eyesight would deteriorate. He was able to continue to function normally until, in 2013, he suffered a mini-stroke. From that moment the deterioration in his vision became rapid.
Currently, Ken has just 2% vision. He can no longer see colours and what he can see is blurred. He describes it as trying to watch a very old black and white TV while under water.
"My left eye was always worse but because I could see out of my right eye I was still able to drive and do most things," he explains.
"Suddenly after the stroke, the vision in both eyes started to go down and down and I had to medically retire from work.
"It is not nice and you do fear for the future and worry that it is going to be dark and lonely.
"Initially I was depressed but you go through a period of acceptance and it is like a roller coaster of emotions and you have periods when you are up and then you can be down again.
"I depend now on voice recognition and I can't see people's expressions anymore which can be frustrating.
"In some ways it is almost like going back to being a child again. When I first went out I needed to hold onto someone's arm just like when you were two or three and had to hold onto your mum's hand.
"Now, that is not an issue at all. The RNIB got me mobility training with a long cane and I can go out and about and I also now use public transport by myself.
"I have also found that 99.9% of the public is fantastic. When you lose your sight you are vulnerable but thankfully I have found most people have been wonderful.
"The biggest thing is isolation and you can get too scared to leave your home and then that leads to depression," he says.
Support from the RNIB and the sensory support team in his local health trust helped Ken to turn his life around and not only accept the new limitations caused by his sight loss but to discover the positives - and he was surprised by just how many there were.
Today he volunteers with both groups, working with the trust to help shape strategic development as a service user and with the RNIB as a volunteer, helping others struggling to come to terms with sight loss.
He was surprised by how many social groups there were in his local town for visually impaired people and he is now a member of a bowling club, walking group and a Pilates class.
Modern technology has played a big part in helping him to communicate by phone and using a tablet and he is able to indulge his love of reading by listening to audio books.
"Audio books opened up a whole new world of entertainment for me as I am not able to see the TV anymore and I have now set up an audio book club in my local town," he says.
"I have never been the type to sit at home and having been used to working full-time, I needed something to fill my days and I do keep fairly busy."
A huge turning point for Ken was when he took on the huge challenge of a charity trek in the mountains in Iceland in 2016, raising £4,000 for the RNIB.
It was an arduous five-day challenge on tough terrain in wet and freezing conditions, but it has opened up a whole new world to him.
He explains: "It was a wonderful experience and exhilarating - before it I wouldn't travel to Belfast by myself on the train. Now I go everywhere by myself and I have even travelled to Glasgow alone.
"I used to play golf and I am still a big fan - I had tickets for The Open and I went with my daughter and a friend.
"Although I wasn't able to see anything I did listen to the commentary on the radio and experienced the atmosphere and the sense of occasion.
"I also still go to concerts and I feel lucky because I can listen to my music. I can't see the stage production but I love the atmosphere and a few beers and the night out.
"My advice to anyone who is visually impaired and struggling is to get the support that I had from the trust and the RNIB. There are opportunities for visually impaired people and they should try and get out and try them."
David Clarke, RNIB director of services, adds: "Living with sight loss can have a massive impact on your life and we believe everyone should have access to emotional support. We know that when people get the support they need, they can rebuild their resilience and a sense of optimism about the future.
"It's not just the big, life-changing aspects that people need support with. Sometimes it's the smaller, everyday things that stop people in their tracks or prevent them from living the life they want to.
"These questions or fears can chip away at your emotional wellbeing if you don't tackle them and RNIB's Sight Loss Advice Service can help with this."
For advice and information, call the RNIB Helpline on 0303 123 9999 or visit www.rnib.org.uk