Johnny Gardener, 60, has retinitis pigmentosa. It causes night blindness, affects peripheral (side) vision, and can lead to tunnel vision.
He works at sight loss support charity N-Vision as producer of the Talking Newspaper – having started as a volunteer wiping cassettes.
“It helps me to know I help people.”
Johnny led a double life as a child. Active and sport loving by day, clinging onto his auntie’s hand by night when he couldn’t see clearly.
His auntie raised him after his mum died. “She tried to shelter me from the worst of it. I wore glasses at four, at 12 I found out I had RP.
“There was a lot of pretence on my part. Mates thought me short sighted. But you can only walk into a lamp post so many times before they know it’s not a party trick.
“I could play sport on a good day. I scored three goals by half time then the light deteriorated, and I couldn’t see the ball. I faked an injury.”
Johnny moved to Blackpool from Birmingham in 1995. His partner Carole Holmes also has RP and champions the VI (visually impaired) cause against shared space, pavement parking, and other issues.
“RP affects us in different ways, so we help each other. It helps to have someone who understands. I was judge and jury on past relationships.”
Dating held perils for teenage Johnny. “The picture house was tricky. I’d get lost coming back from the loo.”
He once went to a disco with one girl and left with another – by accident. “I grabbed the wrong hand. I tried to say it was a prank.”
Johnny kept employers in the dark. “I wanted a house, a life, the lot – and I needed to work.”
His City and Guilds led to the building trade, painting and decorating, until he couldn’t tell white from magnolia.
Skilled work followed assembling hydraulic beds, but Johnny struggled to clock in at the factory. He arrived an hour early every Monday in order to turn a corner of his card for the week to make it easier to locate by touch. “Then others did the same! That marked my card!”
He’d get a lift with a mate – but return to the car on well before him. “I’d be stood in the wing and rain and snow hanging around – rather than let him see how much I’d struggled to get there. I was the great pretender.”
Mortgage paid, moving to Blackpool was the “best thing I ever did”. “I’ve got Carole, I’ve got a job, I can still get from A to B with my cane, and I have friends.
“A lot live alone. N-Vision is their only link. The Talking Newspaper and the café clubs are brilliant because they take the charity to the community.
“National Eye Health Week is great for raising awareness. My condition is regarded as incurable. But many more can be cured if caught soon enough. Book that eye test.”
“We were walking home with the shopping and I suddenly realised I couldn’t see my daughter and she was right alongside me” – Eve Osborne
Eve Osborne (pictured) and husband Bob moved from Kent a few years ago to a retirement bungalow in Cleveleys.
“We liked it here, people seemed nicer and it was safer because I wasn’t good on steps and stairs,” says Eve, now in her 60s.
Eve was re-certified as severely sight impaired (she has retinitis pigmentosa which affects night and peripheral vision) and registered with social services for a refresher course on long cane training.
“I’m so glad I did.”
Bob died 15 months ago. Eve lost her husband, helpmate, guide. “I was devastated.”
Her late husband used to drop Eve off at sight loss support charity N-Vision’s monthly café club at Cleveleys for a cuppa and a catch up with new friends and staff.
It proved a lifeline. Now accustomed to using a long cane to detect hazards Eve makes her own way there. She also volunteers at the charity’s Cleveleys shop.
“I look after the tills. It’s great. I’ve made friends and have so many people to talk to. I set myself challenges too. I went to London by train to see my family – I’d never been on a train on my own in my entire life.”
Eve is down to 10 degrees of vision. “I can see just half of your face. I move my head side to side to extend my field of vision. I must get funny looks.”
Eve’s RP was diagnosed at 30. She had walked home from the shops and realised she couldn’t actually see the daughter “right alongside me.”
She went to a friend – and walked into her dustbin. “I just didn’t see it”. She visited her GP. He put it down to vitamin A deficiency. A year later he referred her to a London hospital. “Wait and see hadn’t worked,” says Eve.
Medics diagnosed RP immediately.
“What happens now, I asked. Nothing, go home, get on with life. I was on my own. I caught the bus back, went to my friend’s and cried.
“I had three young children, I didn’t want to worry them. My father was diagnosed soon after, my two sisters too.
“My eldest daughter was diagnosed four years ago, she’s 41, my youngest two years ago, she’s 37. My middle daughter is 39. One hospital says her sight problems are down to diabetes, another says it’s RP.
“Not many have our strain of RP.”
Eve says research will find the magic bullet to target the misfiring genes.
“Gene therapy, stem cells – a cure will come in time. Probably not in my time.”
I count myself lucky to remember colours – June McLaughlin
June McLaughlin, of Poulton, was born with optic atrophy. Inherited, irreversible. It wastes away the optic nerve fibres which relay impulses from eye to brain.
June’s down to five to 10 per cent sight. She can’t see colours, her vision is blurred, and she struggles with peripheral vision.
June still shepherds other severely sight impaired people to and from N-Vision’s café clubs and uses skills acquired over 10 years customer service with one of the big six energy giants to ring round fellow clients and dig a bit deeper when “I’m fine, thank you” just doesn’t ring true.
Charity volunteer June adds: “We’re there to make life less trying.”
June and her husband moved from Basingstoke to a bungalow in Poulton three years ago. “Basingstoke’s forward thinking but not compassionate. People are nicer here.”
Her ambition is to walk into Poulton town centre alone and unaided.
“But Breck Road is a nightmare, such a busy road, motorists try to catch the lights before they change – and there I am with my feet in the road because it’s supposed to be safe.”
Her long cane is her ally to independence. “I had a symbol cane, few knew what it went, and it didn’t help me detect hazards. I resisted the long cane, saw it as a stigma – I was frightened.”
Three inspirational staff at N-Vision helped her.
Eye clinic liaison officer Linda Sethi invited June to an information day – she had been re-certified as severely sight impaired and referred to Linda at the hospital.
“I came because I knew little about the area.” Volunteer coordinator Stephanie Beasley overheard June advising a working age man on Access to Work and other help. June’s previously worked as a cleaner and in a deli bar preparing specials.
“Have you thought of volunteering? Steph asked me. I’d retired after 10 years working for one of the big six energy giants. I left the information day as a volunteer.”
Low Vision worker Brian Casey advised June to learn to use the long cane while she still had some sight. ECLO Linda referred her to social services for help.
She’s since caught the train to Preston, braved the new shared space, and now “goes down as well as up escalators”.
It means she’s no longer relies on her husband’s chauffeur skills. Instead the couple explore places at a gentler pace. “Such as the zoo and Stanah country park. “It has a VI trail. My husband uses a mobility scooter.”
June admits: “When I was first registered as blind I cried. I wanted a job, a life. I don’t like labels.
“I can’t see very well. I can’t change that. I realise how bad it’s become when I try to do something I could do months ago.
“But I count myself lucky to remember colours, particularly turquoise, so hard to describe to someone with no concept of colour.
“I call it a cool, not cold, colour and pretty – like putting your hand in a pool.
“Cherish your sight. Get your eyes tested. So many still have a choice.”
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"I scored three goals before half time then had to fake injury because the light had changed"
Johnny Gardener N-Vision Talking New editor
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