So, what can you see?

Going through ancient family photographs we found a picture of Sharon at the age of one month. She is lying on a comfy pillow with both her big eyes open.

“That´s when I had two eyes,” she said looking at the photograph. In fact, Sharon can only see out of a sliver of her left eye today and has been classified as fully blind by both the Spanish and British health authorities.

If you ask her: “What can you actually see?” she finds it difficult to answer, like most blind people. “I don´t know what I should be seeing so how can I describe it?” she said. Most people think of blindness as like being in a dark room with no light. But most blind can perceive light and dark and patches of shape and colour. Her problems are thought to stem from a hereditary genetic condition called Retinitus Pigmentosa. This centres around the photo receptors of the retina at the back of the eye. Actually, the retina is a part of the brain and the photo receptors contain millions of cells, shaped like rods and cones. In a normal eye fluid rushes in and out of these cells in response to visual stimulus creating electrical signals that are interpreted as sight by the retina and brain. With RP, the cells fail to empty properly and over the years become filled with fluid and useless.

RP is rather an orphan disease. It doesn´t affect anything like as many people as cancer or heart disease so the incentives for research and profitable treatments are not large enough to attract major interest from the commercial companies who develop such cures. To be fair, it is profit that provides the cash for cures. RP is a genetic disease and, therefore, it is activity like stem cell research that provides the best hope of breakthroughs. It is a hereditary, chromosome-linked, disease, usually passed down through the male line. Sharon is unusual in being an affected female and it has been speculated in the past that there is an outside chance that her condition is not RP at all – but it shares identical symptoms. Sharon has been told that it was triggered by catching measles when she was 18 months old. “Having an operation,” “Getting special glasses” “Taking diet supplements and vitamins” are no use when it comes to dealing with RP. The retina, or TV screen, is bust.

When down, Sharon, wonders why, with RP, she should have been set a stroke to cripple her as well. But, with her mighty spirit she concentrates on getting on with life as it is rather than as it should be. She is interested in everything, except “boring subjects” such as those that interest her husband, talks all day and loves meeting friends.

Let´s ask Sharon some questions:

Question: “So, what can you see?

Answer: “Colours. Things are blurry looking but if someone tells me what is there or I know already I can sort of work it out in my mind what it is supposed to look like. For example, if I know there is a door there, then I expect to see a big brown patch because the door is meant to be there. I can´t read at all, no matter how big the print is. Because I don´t know what is there I don´t know what I am supposed to be seeing, so I can´t see it. When I am eating I use smell to identify things on the plate. I have no depth of vision, so steps are a nightmare for me, because I don´t know how deep they are. Everything looks flat to me, like a painting on a wall.

Question: “Can you recognize people in a room or passing in the street?”

“No. I recognize people by their sounds of their voices. When I am sitting with a group of people, that is how I work out where people are – by where their voices are coming from. When I could walk, people often commented: ´You walked right past me the other day. What´s the matter? ´ It used to upset me that sometimes people would think I was snooty or being rude and had deliberately not spoken to them.

Question: “What about facial expressions in people who are talking to you? “

Answer: “No, I can´t see them at all. So, if people are making jokes or saying certain things, I sometimes miss this. Or I misunderstand what they mean, sometimes taking things seriously when they are only kidding.

Question: “Can you see the television?”

Answer: I am lucky enough to have a big TV and I can follow what is going on by what people are saying and not by the pictures on the screen. But I often miss lots because I can´t see things so I must miss loads. After all these years I am quite used to it now. I hate it when in dramas they hold up bits of evidence or notes and say what they are or read them out. I recently complained to the BBC about a news item about a new wonder wrinkle cream. The jar was actually shown on the screen but the whole story didn´t once mention the name out loud. I´ve had no response from the BBC.

Why don´t you get a blind dog?

“If we can sell our house and farm and move back to the UK, I will definitely get one. The blind dog people are standing by and will give me a dog. When told that I was in a wheelchair they said: ´We have dogs for blind people in wheelchairs, ´ which was a surprise. Old Sam, my lovely old Golden Labrador, will probably like having someone young around.”

Sharon said: “If anyone wants to ask any other questions about being blind, don´t worry, ask away. I won´t be embarrassed, I have been blind for so long it is part of my way of life. I talk about it as it is just something natural for me. I have no worries whatsoever about discussing it. My husband does the typing and editing on this blog for me.”

For more information about RP see: www.brps.org.uk.

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©Phillip Bruce 2009.