Everyone has bad days

Dec 22 2007 by Emma Pinch, Liverpool Daily Post

Emma Pinch meets a teenager determined not to let her failing eyesight stand in the way of a bright future

RARELY a week goes by on X-Factor where, in the shameless rush for votes, contestants don’t manage to squeeze out a few tears over the tragically early death of their goldfish, or when recalling that terrible Christmas when they didn’t get the gifts they’d asked for.

If such cynical emotioneering strikes a sour note, then Warrington’s Kayley Johnson is the antidote.

Having answered an advert in The Stage for a place in the new Girls Aloud recently, Kayley found herself auditioning at the Pineapple studios in London, and survived to the last 10.

She had sung, sparkled and one of the judges, Lee from Steps, loved her – now all she had to do was show that she could follow the choreographers’ dance moves.

What Kayley deliberately hadn’t mentioned was that she is registered blind.

“I’ve always wanted to be in a girl band,” she explains. “Now it’s everyone’s dream, but for me it really is. When it got to the dancing, I couldn’t see what the woman was doing at the front so I was making my own steps up and I didn’t get in. If I’d told them about my eyes, I could have stood next to the dance teacher, but I didn’t want to think I got a place or didn’t because of my eyes.

“Some people are like ‘Oh, my God, really if that was me I would kill myself’. But, if it actually happens, you have to get on with it the best you can and you don’t want sympathy at all.”

Kayley, 19, was diagnosed two years ago with Stargardt‘s disease, an inherited degenerative condition where photosensitive cells in the retina die off, causing loss of central and eventually colour vision and sensitivity to daylight.

It struck just as she, like millions of others her age, was making the first tentative steps towards independence.

But while her plans for the future have had to be rethought, she is determined to find a silver lining to her situation.

She first noticed a change in her vision at the age of 16, while attending Barrow Hall Sixth Form College, in Sankey.

”I was seeing a teacher outside the staffroom and I remember her face just disappeared in front of my eyes,” she says. “My friends just laughed when I would ask, ‘is that such and such a person’ because I have got a reputation for being a bit dizzy. I just thought I needed to get myself to SpecSavers.”

She went to get her eyes examin- ed and, when months of tests re- vealed retinal problems, was refer- red to St Paul’s Eye Hospital at the Royal Liverpool Hospital, for diagnosis.

Eventually, it was found she had Stargardt’s disease, a condition which affects approximately one in 10,000 people.

“I look at people’s faces and it’s like they are so pixelated there’s nothing to see. I used to be able to see my mum if I looked up or down. I can still just about do that if I’m really close, but I’m not because it looks stupid so I look at her normally and pretend.”

Reluctantly, she had to give back her provisional driving licence and last week finally hung up her shop assistant’s uniform, conscious that she was no longer able to help customers.

For practical reasons, she is also reconsidering her life-long plan to go to university to study art and design, despite having just scooped the top award at Priestly College, in Warrington, for that subject. “My eyesight has gone so bad over the last two years and you don’t know how bad it’s going to be,” she says.

“I would have got through univer- sity because I’m an outgoing per- son. But after you’ve gone to university and done the art thing you’ve got to get a job at the end of it. I’m just thinking practically.”

Kayley says it was the “littlest things” which frustrate her.

“I can’t read anything like instructions on fake tan, that bit which tells you how good it will make you look, and I think, ‘Oh I really wanted to read that’,” she laughs ruefully. “Putting the key in the door when someone drops you off and you’re there for half an hour trying to open it, and the worst is not being able to smile at people I know, because I have to know what colour they are wearing to recognise them.”

But it’s incidences of other people’s ignorance which really takes your breath away. Kayley’s blindness isn’t immediately obvious from her appearance, which can be a mixed blessing.

A few weeks ago, she was at the cashier’s counter in the bank and was struggling to read some text she had been passed.

“The cashier lost her rag and said ‘Are you stupid?’,” she recalls. “But I thought I’m not going to make a scene here, and I just walked away.

“On the bus recently, the driver said, ‘Have you stolen that off your grandma?’ when I showed him my pass.“

She possesses the youthful resilience of any 19-year-old, and views the future with sunny optimism. Her absolute lack of self-pity is engaging, but she is honest enough to admit she can’t always avoid worrying about the future.

“I can just imagine if you go to the playground, you’re not able to see your kids. My life’s going to be a bit harder,” she says.

“Everyone has bad days but at the end of the day it’s happened to me, and you could just think of the bad things all the time but there’s not much point.” Her blindness means relying heavily on the help of friends, especially when it comes to shopping and using cashpoints.

“Some people, people I thought were my friends, didn’t know how to deal with it, or were scared or whatever,” she says.

“But I’m really proud and thankful to the friends who have stuck by me and, if anything, it has strengthened the bond between us.”

For her birthday, her family bought her a studio session. She made copies of the CD and sold them for the St Paul’s Eye Appeal.

It spurred her on to approach local pubs, community centres and golf clubs about performing, and she is now booked for regular gigs, Christmas Eve and New Year’s Eve. She also has an agent and she is as excited about the future as any 19-year-old could be.

“When I was younger, I thought I would never get a job like this,” she beams.

“If the problem with my eyes hadn’t happened, I probably wouldn’t have discovered this talent for singing and got to where I am with it, and instead would probably have gone to university and done an art course. Every cloud has a silver lining, and I’m achieving more than I ever thought possible.”

TO FIND out more about Kayley’s appeal, go to www.eyecharity.com

emma.pinch