Health

Thursday 28 August 2014

Jenny O'Connell: 'I regained my sight after 46 years'

'When I saw my husband for the first time, I thought he looked...average'

New faces: Jenny O'Connell with a family portrait, including her husband Seán. Photo: Dave Meehan.
Jenny O'Connell six weeks before she went blind
Bill Power

Jenny O'Connell went blind at 11 but a rare procedure helped her to see again.

Framed photos of family occasions take pride of place on the living room walls of 61-year-old Jenny O'Connell's home in Crumlin.

There are photos of her two children at their debs and their weddings, as well as a portrait of the entire family together. But the most poignant of them all is a black-and-white photo of an 11-year-old Jenny making her confirmation, taken just six weeks before she went blind.

For 46 years, Jenny missed out on seeing her children's faces as they grew up. She had never seen Seán, the man she married, the home they shared, or the flowers they planted together in their garden.

For decades, it appeared Jenny's visual memories of the world would forever be frozen in April 1964, when Eamon de Valera was president, The Late Late Show was less than two years' old and The Beatles dominated the charts. But that all changed five years ago this month, when Jenny's sight was restored at Dublin's Royal Victoria Eye and Ear Hospital.

The rare procedure, carried out by Bill Power, one of Ireland's top eye surgeons, involved inserting an artificial cornea in Jenny's right eye. The ophthalmic surgeon's outline was the first shape Jenny saw when her bandages were unwrapped.

"I could see Mr Power's shadow but not his face," Jenny recalls.

"When they took off the eye patch, they held up a board with letters for me to read. I remember saying 'Mr Power, I can't read that – I'm illiterate'. He asked: 'How are you with numbers?' and one of the team brought up a board with numbers. I could read it down to the second-last line."

When daughter Martina and son Michael came to visit, Jenny struggled to reconcile her mental images of her children with the faces at her hospital bed.

"I got a fright at first because Martina was so like me in early days and Michael was so like my father it spooked me," she says. "Martina wouldn't believe I could see again; she had a marker and paper and stood at the end of the bed, writing out numbers and letters I would know. When I read them, she sat in the chair and went into floods of tears, saying 'it really did happen'."

Jenny's first impression of her husband's appearance was not altogether flattering. "Oh, I thought he looked average!" she remembers. "When you can't see, you go by what a person sounds like or what someone tells you they look like. I saw people that I had known for years and I didn't even know some of them were black."

Half a century ago, Jenny, now a grandmother of two, lost her sight after suffering a rare reaction to headache tablets. She was diagnosed with Stevens-Johnson Syndrome, a condition that caused permanent scarring on her cornea.

She discovered she was going blind on the day of her sister Margaret's third birthday, when she lay down in her bedroom because of headache pain.

"My dad came into my bedroom and said 'are you not getting up?'" Jenny says. "I said 'I don't feel well, Dad'. He said 'come on out for five minutes'. I said 'well put the light on then'. He said 'it is on'. The last thing Jenny remembered seeing before the world went dark was Margaret wearing a blue dress decorated with rabbits.

Despite the setbacks she suffered, including the death of her father at age 15, Jenny was determined to live a normal life. She met Seán through a social club run by the National League of the Blind and they both worked in the workshops for the blind in Rathmines, making crafts such as Moses baskets.

Having learned to live without it, the sudden gift of eyesight was both a blessing and a curse.

Jenny had lost her visual memory and was overwhelmed by the sight of everyday items, from flowers to cups – she couldn't recognise anything without touching and smelling them as she had done for almost five decades.

"The steam coming out of the kettle terrified me – I didn't know what it was," she says. "I didn't recognise bus stops. The bus stops of my childhood were black and the shelters were made of wrought iron. Now they are a lovely bright yellow and the shelters are made of glass. I was in a time warp."

Jenny's story has parallels with that of the late Shirl Jennings, whose sight was restored after nearly 45 years. He was the inspiration for the 1999 film At First Sight, starring Val Kilmer.

Neurologist Oliver Sacks, known for his book Awakenings, about catatonic patients temporarily reanimated by drug treatments, helped Jennings make sense of a confusing, unseen world.

But Jennings went blind a second time a few months later, when ill-health cruelly robbed him of his vision once more.

Jenny feared a similar fate would befall her last year when she came down with an infection in the back of her eye.

She, too, has been terrified at times by seeing first-hand a world she had been relatively protected from; images of violence, poverty and cruelty to animals are especially frightening. When Seán bought her a large flat-screen television, she was shocked by the portrayal of violence on Love/Hate.

"It knew it was true to life and it went on but I hadn't seen the damage caused by violence before," Jenny says.

"I can be very oversensitive about things like that, because I can't shut them out any more.

"Seán and the family have kept me grounded. I really could have gone off the deep end. After I got my sight back, I sat in a corner for a while crying – I think I was afraid of everything.

"At times, I ask if I did the right thing by getting the operation. I had a dream to see what people looked like and I didn't expect it to happen. All I needed was an hour or two to see the people in my life."

Jenny's family set out to show her the beauty she had missed out on, with trips to Wicklow to see wild roses and to Wexford, to see the countryside she remembered from childhood summers.

Despite Jenny's growing confidence, the husband who guided her in darkness and light has suffered his own adversity; Seán's sight had always been impaired due to glaucoma, but the added complication of an hereditary strain of type 2 diabetes diminished his sight further. He hasn't lost faith that science will one day enable him to see again.

"I had my day," says Seán, as his guide dog Roy sleeps near the mantelpiece. "I think the best time to have your sight is when you're young and you're meeting girls. And I had all that. It is worse for people who were born totally blind. They don't know what a plant or animal looks like or what it's like to see the countryside in the summer."

The surgeon who helped Jenny see again

Bill Power  believes Jenny is "probably unique in the world" in regaining her sight so long after first going blind.

Power fitted Jenny with a Boston Keratoprosthesis, an artificial cornea for patients unsuitable for a corneal transplant. The consultant ophthalmologist picked up the technique training with Claes H Dohlman, the world renowned cornea specialist. Power has conducted 40 of these operations in Ireland over the last decade. "About 20pc to 25pc now have complete vision, good enough to drive a car, and about 65pc have vision good enough to feed themselves and walk around, We have some exceptional patients who are driving and living normal lives.

"The big bonus with Jenny is that she got a result none of us could have expected. She was so psychologically well adjusted that I knew deep down that even if she didn't get the results she was hoping for, she'd cope quite well."

Irish Independent

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