Health

Tuesday 22 July 2014

Life with vision deterioration

Gerry with his dog Orva

Affecting many people, vision loss can be a major challenge in many different ways

It's one of the most important senses: all the beauty of the world is lost to you when your vision goes.

THE blow came when Gerry Kerr's teenage daughter changed her hair-colour from red to blonde – and Gerry couldn't see it. It was a watershed moment for the 49-year-old father of two; a huge turning point in his life.

A teacher who'd spent much of his career working with young offenders, Kerr's sight had been slowly deteriorating for years – but the hair-colour incident was what finally hammered home the fact that he was now one of the estimated 224,000 people in this country affected by vision impairment.

"I could see my daughter's outline and the shape of her head but the colour was gone," he recalls.

"I realised I'd been in denial; that I'd been pretending that I could see, when I could really only see outlines. That was the big shock," observes Gerry, now 60, from Ballygall, Dublin.

It's believed there are about 3,500 people in the country with Retinitis Pigmentosa (RP), a genetically inherited disease of the eye that causes a narrowing of the degree of vision, over a period of time, to tunnel vision and eventual blindness.

However, says Avril Daly, Chief Executive of Fighting Blindness, RP is only one of a huge range of eye conditions causing problems for people of all ages.

Many eye problems are linked to ageing – statistics show, for example, that the condition Age-Related Macular Degeneration affects one-in-10 people over the age of 55.

Another growing concern is the increase in diabetes, which can cause sight impairment, says Daly. Diabetic Retinopathy is believed to affect some 60,000 people.

For Kerr, the acknowledgement that he was slowly going blind was like a bereavement:

"I was very upset by that – it's like the sense of loss when someone dies. You feel like a part of your heart is missing, you feel an emptiness.

"Your vision is very important to you; it's one of the most important senses because all of the beauty of the world is lost to you when it goes."

A few months after the hair colour incident, Gerry had to resign from his job, and, at just 49, was catapulted into a whole new life.

His central vision had started to go, and he found it increasingly difficult to read copy books or computer screens.

"I was without a job and rapidly going blind. My wife went back to work full time. The girls were still in their early teens, and we still had 10 years to go on the mortgage, but we managed."

His condition, Retinitis Pigmentosa, a genetic disease of the retina that results in steadily deteriorating sight, had been diagnosed some three decades ago following a near-accident when Gerry was in his early thirties.

He recalls that first warning: "When I was driving into town one day, I turned a corner and just missed hitting a pedestrian who'd stepped off the pavement."

Concerned by the fact that he hadn't even seen the person, Gerry consulted an optician, and then a consultant.

He was diagnosed with Retinitis Pigmentosa and told that his sight would deteriorate slowly. That's exactly what happened.

"Over the next 15 years I lost my peripheral vision, which meant I had to give up driving. Then I had to give up sports; I'd been playing football and badminton, but I couldn't keep it up."

A few months after the incident with his daughter's hair, Gerry finally acknowledged to himself that he had to start using the long cane.

"That was a really big step. It was about admitting to yourself that you're visually impaired and that there's no going back."

He found the cane, which he got through the National Council for the Blind, extremely helpful: "When people see it, they get out of your way and make allowances for you."

He also took another big step: "I went for counselling. I had become anxious and stressed and depressed after my central vision became very impaired," he recalls.

The Fighting Blindness organisation, with which he had worked for several years, referred him to their Insight Counselling service, the only dedicated counselling service in Ireland for people coming to terms with vision loss and blindness. This year it celebrates its 10th anniversary.

"I had gone through shock and denial and paralysis – you're frozen and depressed and you focus on what you cannot see," he recalls.

Anger, resentment and sadness came next – despite the fact that he had so many years to prepare for it, losing his sight was a huge trauma.

"The biggest emotion for me was sadness," he says.

"It is a long bereavement process. I had many years to adapt, great support from my wife, and from the counselling service, but it was still a huge trauma. My whole life as I knew it had gone."

It took Gerry about two years to come to terms with his sight-loss:

"You have to be careful about falling into negativity, and of only seeing what you cannot do now compared to what you used to be able to do – go to a film, drive the car, go shopping."

Coming to terms with visual impairment can take time, says Mary Lavelle, Counselling Psychologist at the Insight Counselling Centre.

Its impact is not just restricted to the affected individual, she points out – it affects a whole circle of people, all of whom react in different ways:

"Some family members can go into denial. Others can be very supportive, or over-protective.

"There's a domino effect on the family dynamics, and that can add to the stress and upset for the person who has received the diagnosis, because they have to take into account their close family circle, and also their friends and the activities they enjoyed. It has a ripple effect on every part of your life."

Whether it's a genetic condition that you always knew could affect you, or whether it comes as bolt out of the blue, she says, the emotional impact is enormous: "There's a huge sense of loss and grief, and there's a lot of fear about the future.

"The person worries how they are going to manage or cope. One's whole sense of self and identity is challenged.

"Some people refer to it as a grief, there is a sadness, a sense of loss, anger, and of frustration."

"The move from fully to partially sighted is huge," says Lavelle, now in her sixties, who has impaired vision as a result of RP, with which she was diagnosed in her twenties.

"People go from being someone with status in the family or workplace, community to suddenly being out of a job and trying to learn new skills and manage with a disability that some people find very difficult to accept."

It's not a smooth transition: "You can work through the process and reach acceptance, but every now and again something will hit you."

It's also easy to understand how those losing their sight can get depressed and angry over simple things, like how to do their shopping, says Lavelle: "Perhaps you're on your own getting ready to go out and you drop an earring and can't find it – it's a small thing but it can be immensely upsetting."

There are constant reminders, agrees Kerr:

"If you bend over to pick something up you can smack your head on a table or chair, you can walk into a door if it's left open – that's all part of the misery of it."

Big, important events like First Communions or a daughter's wedding day can cause upset, says Lavelle, who says the big demand for the counselling service means the South Great George's Street service has treated more than 500 people in the decade since it opened, and is being expanded to Cork and Galway this summer.

Eventually though, you can adapt. After all, Gerry did.

Now he keeps his black shoes on separate sides of the wardrobe to his brown ones, owns a talking laptop that he sourced through the National Council for the Blind, and has a wonderful guide dog, Orva, through the Irish Guide Dogs Association.

Healing is the final stage, he says: "It's when you have adapted and reinvented yourself. I don't think about what I can't see any more. Instead, life is full of what I can do – for the most part, my life is full and happy now."

Kerr does school visits, where he talks to Transition Year students about facing challenges.

"Everyone has a challenge to face," says Gerry, now a member of a support group in Fighting Blindness.

He went to college, studied for a Higher Diploma in Conflict Resolution, and now works part-time in that sector.

"At one time I felt I was in a very dark place, but through the support of my wife and the counselling I was shown another way.

"I have a very full life, I play guitar in the local pub on Tuesday nights and in the church on Saturdays, I go swimming, and I go to the gym."

A member of the Labour Party, and on its Disability Committee, he's also on the board of Fighting Blindness and Care Leavers Ireland, and is involved with Storytellers of Ireland.

"I have a different life now. I'm not bogged down by thoughts of what I cannot do."

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