Thursday 14 December 2017

'I'd love a cure so that I could learn to drive...'

Mother and daughter, Antoinette Feehan and Michelle Hickey, both have a condition that affects their sight

Michelle Hickey and her mum, Antoinette Feehan, both have the eye condition Retinitis Pigmentosa, for which there is currently no cure
Michelle Hickey and her mum, Antoinette Feehan, both have the eye condition Retinitis Pigmentosa, for which there is currently no cure

Edel Coffey

WE'VE all had someone bump into us in a dark pub or on a crowded street. Mostly, we put it down to part of modern living, and you rarely think that the person might actually have a sight problem.

Not all people with sight problems have a guide dog or a white stick to alert us and, in fact, without such signifiers, they are faced not only with their sight difficulties but sometimes also a lack of understanding from others.

Mother and daughter, Antoinette Feehan and Michelle Hickey both suffer from Retinitis Pigmentosa (RP), a hereditary degenerative disease.

Michelle first realized she had the disease when she was in primary school. "I have short sightedness so when I started to complain about the blackboard, my mother took me to the Eye and Ear hospital and they could see that RP was starting to form."

What followed were a lot of tests. "They were gruesome. I used to hate it. You don't understand it when you're a kid."

By the time she got to secondary school, she noticed her vision was getting worse. Her peripheral vision was deteriorating and she had tunnel vision. "I tended to ignore it. I didn't tell anyone about it because it didn't really affect me too much. I would have difficulty walking into low-lit places but I would cope with that by going somewhere that I knew the layout.

"I acted like someone who didn't have it. If I was going out with someone, I just wouldn't go to the cinema with them."

She has continued to live that way even though the disease is now at a point where it really does affect her. "I have tunnel vision and bad eyesight. I do need help but I don't want to ask for help and don't want people knowing."

On the rare occasion she does tell someone about her condition, she says they don't really understand. "They think I'm not that bad and they don't get that there are different kinds of blindness. I'm legally blind. I can't drive a car."

This lack of awareness and understanding has led to difficult reactions when Michelle has bumped into someone in a crowded place.

"I've had people say 'watch where you're going, you blind bitch'," says Michelle. "When I qualified as a Zumba instructor, I went with a friend and it was dark when we were leaving. To me, it was really pitch dark. I was panicking the entire day about it. I knocked into another girl, and she screamed the car park down. I was so upset. I just said my eyesight is not that great. I want people to know so that they can help me, but I don't want them to know because I don't want them to treat me differently."

Awareness is a big problem, even amongst medical staff, says Michelle. "I went into hospital and half the research team were looking in my eyes because there's not much awareness of different degrees of blindness."

Despite her vision problems, Michelle is independent and her eyesight has not held her back in her career. "I can still go to work and leave work at night because I know my way home and the streets are well lit."

Unfamiliar places, like dimly lit pubs, are out of the question. "I would just say no. It holds me back in that way. My mam is the opposite. She's been like that for the last 20 years."

Her mother Antoinette's condition affected her badly in her teens. She wasn't able to take part in the usual adolescent activities. "When friends went to the cinema or dances, I wouldn't go. When it was dark, I was afraid."

Antoinette's condition has deteriorated a lot over the years. "I can't go out at nighttime on my own. If I'm going to a pub, I'd have to get you to meet me outside. If I go inside and it's dark, I'd just fall over a stool. If I'm in a big supermarket, my peripheral vision is bad so, if there are people coming on either side of me, I'd trip over. I have a white stick now."

Unlike Michelle, Antoinette does not have difficulty asking for help. "If I'm in a restaurant and it's dark around the table, I'll ask them to put up the light on the table.

"I don't think people know how bad it is. I've had a lot of experiences in toilets that are really dark. Some of them are designed in black. People would comment and think you're drunk or something."

The National Vision Coalition recently published a report that claimed a proper strategy for eye diseases could save the country up to €76 million a year (blindness and vision impairment cost the Irish state €205 million in 2010).

"The government have cut so much," says Antoinette. "You used to be able to get things on your medical card, like magnifying glasses and winter sunglasses, but they're not available any more."

At the moment, there is no cure for RP. Says Michelle: "I might not have it as bad as my mum – my rate of deterioration is quite slow. I'm quite independent. I'd love a cure so I could learn to drive. They're making huge advances in RP but not in the one that we have.

"I just remain hopeful. If they could stop it, that would be great. I curse it and I get so frustrated that I can't do the things other people do. That's the tough part. I don't want to have to ask for help."

All Michelle and Antoinette can do at the moment is live as healthily as possible. "You can try going on a high dosage of vitamin A, if your liver can take it," says Michelle.

"Otherwise, it's just healthy living. I try my best, I eat healthily and try not to drink too much.

"My eyesight could start to go at any time so I just try to enjoy my life, and travel as much as I can now because you don't know what's going to happen."

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