'I used to pray that I'd keep enough of my eyesight so I'd see my children's faces'- Irish woman who lives with limited vision
Even though her eyesight is poor, Helen Murphy is leading a hugely productive life. She tells Joy Orpen that she is immensely grateful to the medical specialists who have helped preserve what little vision she does have
Helen Murphy (57) does not see life as clearly as she would like. In fact, she can hardly see anything at all, because of her profound lack of eyesight.
It's a situation she's lived with for most of her life. "At school, I couldn't see the blackboard," she remembers, "so I was sent to Dungarvan for an eye test." She went by ambulance, a common practice in rural Ireland in those days. She was then fitted with glasses - big, thick ones, as her sight was so poor.
Helen says that growing up in a family of seven children, on a small farm in Co Waterford in the 1960s, was somewhat challenging. "We all had to work. I had to look after the younger ones, do the washing, and help outside, whatever the weather. We all had to," she recalls. The children at the local school used to tease her, calling her four-eyes. "Bullying runs deep," says Helen. "It makes you feel inadequate all your days."
While Helen was aware she was short-sighted, she didn't know why. She also learned that her retina was at a high risk of becoming detached - and an eye specialist advised her parents not to let her do strenuous farm work. "That made me feel even more inadequate," she says. "You want to be up on the bales, piking, like everyone else. This just meant more work for me in the house."
When she was 18, Helen's glasses were replaced with contact lenses. "There were seven children on that 70-acre dairy farm. I don't know how my parents managed to find the money for me to get the contact lenses, but they did. Back then, they were made of glass; it felt like putting sugar in my eyes," says Helen. "But I got used to them."
Following school, Helen did office work. But soon after she married local lad Pat Murphy, the job came to an end. "That was a terrible shock," she says. Naturally she did what she could; she planted a garden next to their little cottage, and took care of the children, Maria and Brian. (Three years later, a third child, Martin, was born).
During this particular period, Helen began to notice a black spot in the corner of her eye. And when she blinked, the spot started flashing. One morning, the opaqueness had spread halfway across the eye, so the doctor sent her to hospital. "I said goodbye to my two babies, and by the time we got to Waterford, that eye was almost totally black," she recalls.
The specialist told Helen that the retina in her eye had become detached. They would try to fix it surgically the following day. "It went brilliantly," says Helen. But unfortunately, a few weeks later, the retina detached again. "This time, they stitched it back on," Helen recalls.
"The pain afterwards was horrendous. After I'd been discharged, I had to go back to the hospital. They explained the pain was bad because of the 'mighty stitching'. The following year, the other retina went too, so, I was again admitted for surgery."
Those procedures, along with contact lenses, allowed Helen to enjoy partial vision for a number of years. But it wasn't enough to permit her to drive, and she always suffered from night blindness. "I never realised other people didn't experience night blindness like I did, until someone in a support group started talking about it," says Helen. "If I go to a concert, I can't see the stage, and all the seats blend together."
By the mid-1990s, Helen's vision was getting cloudy, so she was seen by consultant ophthalmologist Mr Patrick Hayes in Waterford. "He removed cataracts from both my eyes," explains Helen. "It worked really well, but after that, I couldn't tolerate contact lenses anymore, so I went back to glasses. But this time they were nice modern ones."
Over the next several years, Helen concentrated on rearing her three children. She also worked as a home help, to get her kids through college. She'd walk to work, or kind neighbours would give her a lift. Maria is now a secondary school teacher, and has a three-month-old daughter. Brian, who studied animation, is currently working for a major hardware chain in Dublin, while Martin is working in the IT industry in Cork.
Currently, Helen's visual health is "well taken care of" by Dr Emer Henry and Dr Maureen Hillery, former colleagues of Mr Hayes.
Over time, they began to notice a deterioration in Helen's peripheral vision. She had an MRI scan, but nothing untoward showed up; her disimproving vision continued to be due to flimsy retinas. "One of the eye specialists described my condition as being like 'tiny islands in a sea of black'," says Helen. "And that's what I see with."
About 16 years ago, Helen registered with the National Council for the Blind of Ireland (NCBI). She then did a computer course through the Fas distance learning scheme, and ended up with a merit in communications as well. She subsequently wrote about the problems of travelling with visual impairment for the Fighting Blindness website. As she visits the US regularly, to see her two sisters, she knows what she's talking about.
She also attends a creative writing course at Fighting Blindness in central Dublin.
One Saturday recently, when I visited their offices, the place was buzzing with people who live with visual impairments, doing everything from stand-up comedy to playing the blues on harmonicas. Senior counselling manager John Delany was busy making sure everyone was being catered for.
"I want anyone out there who has a problem to have access to someone as kind and caring as John Delany," says Helen. "He encouraged me to make contact with the Fighting Blindness support group in Cork. They then urged me to be trained to use a cane by the Irish Guide Dogs association. Your blindness locks you into a seeing world, leaving you wondering where on earth the door is. Whereas if you have a cane, someone will show you the way, or open a door for you. This is the best thing I ever did for myself."
Helen says her doctors continue to struggle valiantly to save what little sight she has left. "I used to pray that I'd keep enough of my eyesight so I'd see my children's faces," she says. "Now I can even see my little granddaughter's beautiful face. Those wonderful doctors never gave up on me. Miracles do happen."
Fighting Blindness is an Irish patient-led charity, funding world-leading research into treatments for blindness. It offers professional counselling, and advocates on behalf of people who are blind or vision-impaired. Fighting Blindness, 7 Ely Place, D2, tel: (01) 678-9004, or see fightingblindness.ie