Novelist and children's writer Siobhán Parkinson (her book, Sisters – No way, published by O'Brien Press, won the Bisto Book of the Year in 1997) describes her experience of blindness through macular degeneration to Catherine Foley
I HAVE a form of macular degeneration that is not age related. It’s got a different cause. It’s referred to as myopic macular degeneration. I have a very high degree of myopia and if you have that you have a high risk of getting macular degeneration. In my case there was a sudden onset of wavy vision. It happened nine years ago in my right eye and then two years ago it happened in my left eye.
With the right eye, it didn’t make that much difference, but when it happened I knew there was something seriously wrong. I started to see straight lines go wavy.
A retinologist told me that my central vision had been affected. That’s what you use for reading and for recognising facial details, while your peripheral vision is for getting about. I wouldn’t be able to read the street signs in a strange city but you don’t bang into the furniture.
It’s not that kind of blindness. Steps would be a problem also, but otherwise, getting around is not a problem, except of course that I can’t drive.
The retinologist said I wouldn’t be able to read with that eye, and at that stage, there was no suitable treatment for it. I was in my mid-40s when it happened. That’s young for the age-related type of macular degeneration.
Usually more people in their 60s and 70s get it. But mine was not age related. I was always short sighted. I was about eight when I got glasses and I have always been completely dependent on my glasses.
When this happened, I was working in publishing as an editor, and I was terrified. I had to read and proof-read people’s manuscripts but when I read, I would feel sick because of the wobbly lines. It’s like being sea sick. After about a year, the wobbling settled down and I was alright. I had less vision overall but I was okay.
I decided to give up publishing and I began to concentrate more on my writing. When the second eye went two years ago, that was a completely different story. I knew immediately what it was. I went back to my retinologist, but in the meantime there was a new treatment, an injection into the eye.
I had that very quickly. The injection is a bit disconcerting because you can’t look away the way you would usually. You feel pressure but you don’t feel pain. But a few weeks later, I got a massive haemorrhage and I realised I needed another injection. It was so bad I couldn’t see my computer at all. I couldn’t recognise my own family. It was a week before I got the second injection. It stopped the wobbling. It did help. It shrinks unwanted blood vessels. The haemorrhage dried up and the whole thing seemed to halt.
What I now have is a large black patch in the middle of my vision in my right eye, and in my left eye I have a blind patch about a half to a third the size of the patch in my right eye. I can’t see anything dark. I have an orange handbag so that I will see it. I have no chance of seeing a black handbag.
Very dark, black things disappear on me. White on light would also be difficult. It’s been stable since then. Hopefully it will stay stable.
Outside I have a monocular, which is a small telescope. I stand at the bus stop with this plastered to my eye. For reading I have a Creative Zen iPod and I can download an audio book onto this using my computer.
I’m reading a book by John Updike at the moment. Everything is much slower. I’ve read a lot of the really good American authors recently, Philip Roth, Richard Ford, Richard Russo but I can’t go into a book shop. I can’t browse. I can’t skim and scan.
It’s much harder to find what you want to read. I can’t read the magazines at the hairdressers. The cinema is great although I can’t do subtitles. Everything is much slower. I can’t visit schools any more to do a reading because I can’t see the children and it’s so dependent on facial expressions, I can’t see who is raising their eyebrow or looking askance.
You don’t know who is asking the questions. You’ve much less control in a social situation.
I also have an e-book reader, called an Iliad. You can download a book in text format and put it onto this. I wouldn’t use it exclusively because it’s tiring, it’s a strain and I’m much slower but it means I can read a book on a train so it’s a reading experience rather than a listening one.
I’ve learned to cope with seeing less, with sending less information to the brain – I’ve learned to jump to conclusions. You assume and sometimes I get it wrong.
I very often flag down a Volvo truck because I think it’s a bus. Once the second eye went, my ophthalmologist told me what my reading level was, that I am legally blind.
Working full-time as a writer, I was worried but I can touch type so I knew I’d be alright. The National Council for the Blind introduced me to a software program, ZoomText, which magnifies the print on the screen.
I have a much larger screen, it’s at least one-third larger again than a normal screen. I can also use the ZoomText in my e-mail and on the internet. You can zoom in on the text and you can also have the voice.
That makes the difference really. It’s fantastic, and then I got a video camera that links into my computer and it sends an image of a page or a letter to my computer screen. That’s fine for reading a letter but for reading I have an array of things.
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