independent

Monday 23 September 2019

Sight loss is a different journey for everyone

Phyllis Murray speaks to Jessica Farry about how sight-loss impacted her life, while Peter O'Toole of fighting blindness details courses to help those struggling with sight issues

Phyllis Murray has always had problems with her sight.

Growing up, she struggled with her vision and even had to miss out on normal things like playing outside in the evenings, as her vision was so poor in the dark.

Now in her 70s and residing in Bellaghy, Phyllis has found ways to manage her sight-loss.

She told The Sligo Champion: "I have a genetic disease, Retinitis pigmentosa (RP), and I've had it from childhood. It got worse when I was in my 50s and 60s, I was driving for a good while but as I got older it's got gradually worse."

While her sight-loss made life difficult, she didn't let it get in the way of enjoying her life. She moved to England when she was younger, learned to drive, married and had four children.

She has always been determined to make the most of life.

Phyllis moved to Bellaghy on the Sligo/Mayo border when her eyesight further deteriorated. Having previously lived in Clane, County Kildare, she wanted to move somewhere where she could be independent, with all amenities close by and accessible to her.

She said: "I moved to Bellaghy from County Kildare. It was the best thing I ever did. Everything I need is in walking distance like the shop, the post-office, the church and there are footpaths everywhere.

"I got such help and support from people in Charlestown and Bellaghy.

"I was living in Clane and I wanted to live somewhere were I could be independent and get around by myself. So this was perfect."

Phyllis still ensures she gets out of the house regularly and walks around, as she is keen to maintain her independence.

"I still have some vision, I use a white cane all the time with me when I'm walking just to check unfamiliar places and see if there are steps or something.

"I'm managing around the house OK. It's just my husband and myself at home. I manage the shopping and the housework. It might take me all day to do something when it would take someone else an hour.

"I still have enough sight to be able to appreciate the views from a bus."

Lighting is another issue that Phyllis highlighted when speaking with this newspaper.

Darkness is one thing, but she says poor lighting in a lot of places makes it difficult for her to maintain any kind of a social life.

She said: "I struggled all my life with night blindness, not even at night but in anywhere with poor light. It's not noticeable to other people.

"When I was younger I couldn't go out to play in the evenings because of my sight. My father was blind so I did understand it as a child. I could ride a bike in daylight."

She used to love getting out and about at set-dancing, but the lack of lighting in venues has made that almost impossible for her.

"I was able to read right up until I got cataracts. I have no field of vision. If I had enough light, life wouldn't be so bad. There is a real lack of good light.

"And socially that is a big problem. That's the biggest restriction. It's so dark everywhere. I used to love set-dancing.

"There is a need for good lighting."

Phyllis is managing her sight-loss as best she can, but she says the support she has received has been vital.

"I'm over 77 now, with help from everybody I am managing. I get lots of support. I couldn't have done with without people. At my age it's a different story, younger people might manage better."

Previously, she did a course run by Fighting Blindness about how to live with sight loss. A similar course is being run in the Southern Hotel, Sligo starting on Thursday September 26th, running for four weeks.

According to the census in 2016, there are 846 people in the county of Sligo who are blind or have a serious visual impairment.

"Back when I stopped driving I did a course on blindness, similar to this. I could not get over the change in myself when I did the course. You spend an awful lot of time pretending you can manage fine with sight loss, and there might be people who say there is nothing wrong with you. When I did the course I found I really became myself," she said.

She added: "For everyone that has sight-loss, it's an individual journey for everyone. Some people manage better than others. Some people have different conditions, some are more severe than others."

'Living with Sight Loss' is a free, weekly confidence building course which aims to help people with sight-loss to increase their confidence and independence.

The informal course will provide information and practical advice on a range of essential everyday topics such as getting out and about, information about welfare rights, and how technology can help.

Having first-hand experience of what a course like this can do for someone, Phyllis says she would encourage anyone with sight problems to attend.

"I would appeal to anybody that has any bother with sight to go to this course. You get so much support and understanding, people are prepared to believe you. You really do need someone to understand what you're going through.

"I am managing but with support. It can be a struggle but as long as I get out and about it's good.

"People are my life-line. There is great research being done all the time.

"I would urge people to get support and speak to people who understand you.

"If we could be more assertive about our needs it would help a lot but that's not easily done."

Peter O'Toole, Senior Counselling Manager with Fighting Blindness, explained the 'Ned to Talk' programme.

"Need to Talk is a five year program run by RNIB (Royal National Institute of Blind People) in Northern Ireland and Western Scotland and Fighting Blindness in the Republic of Ireland.

"It's been in place since 2017 and runs until 2021 so we're half way through it. There are two components really.

"We are rolling out 'Living with Sight Loss' courses, starting next month. The courses will be accessible for people living in the region in Sligo, Leitrim, Donegal, Cavan, Louth, Monaghan and surrounding areas.

"A wealth of topics are covered over the course of the four classes. We look at sight loss, mobility, Assistive technology, what support levels are available for people and all that," he said.

The course also entails speaking about reading, mindfulness, sport, leisure and practical elements such as social welfare entitlements.

"There are practical, emotional and social elements to this course. We will be providing lots of information.

"Sometimes for people, speaking to a family member can be tough sometimes and some people prefer to speak to someone on the outside.

"Anyone attending the course is more than welcome to bring along a carer or family or friend."

Mr. O'Toole says that the course than help those struggling with isolation to meet others who are going through a similar journey.

"Many people living with sight-loss do experience a sense of isolation due to a lack of engagement with others.

"Participants get to speak to others who understand what they are going through. It is a great opportunity to meet with people and people can form connections then.

"Regardless of the different conditions that cause sight-loss, people find support from different sources. Everyone is different and every journey is different. As Phyllis said, being there with someone who listens and understands is huge."

Counselling is also offered to those who participate in the course, should they wish to avail of it.

Mr. O'Toole said: "The second component of the course is the delivery of counselling sessions. Anyone experiencing sight loss can experience a lot of anger and anxiety at different times. It can be useful to talk through their feelings, and sometimes it works best with someone who is independent.

"Our counselling service is free and completely confidential. Sometimes people don't have a full understanding of counselling and they can be put off by the idea of it.

"We can also offer telephone counselling if that works better for some people."

For any more information on the course, contact 01-674-6496 or email needtotalk@fightingblindness.ie.

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