'Now I see life in a different way'

What do you do when the doctor says your sight is failing and there's no cure? Alison Whelan spent 10 years in denial before deciding that she had to deal with her Retinitis Pigmentosa
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I don't remember exactly when I started to lose my eyesight. I think I have always had dodgy eyes. Ask a man in love with me and he will describe my eyes as the brightest blue, but ask any optician and he or she will say they are pale and lacking in colour and therefore prone to weakness. I had those tiny NHS specs in blue when I was a kid, the ones with the steel wire that cut into the back of my little ears. I was diagnosed with a lazy left eye, the height of shame when you are five years old. I remember I buried them in our back garden shortly after being called four-eyes at school. I didn't really bother with my eyes for another 20 years.

I don't remember exactly when I started to lose my eyesight. I think I have always had dodgy eyes. Ask a man in love with me and he will describe my eyes as the brightest blue, but ask any optician and he or she will say they are pale and lacking in colour and therefore prone to weakness. I had those tiny NHS specs in blue when I was a kid, the ones with the steel wire that cut into the back of my little ears. I was diagnosed with a lazy left eye, the height of shame when you are five years old. I remember I buried them in our back garden shortly after being called four-eyes at school. I didn't really bother with my eyes for another 20 years.

It happened quickly and suddenly. One day I could read the bus numbers and then the next day I couldn't. It was the early Nineties, I was young and clubs and drugs were a way of life for me. I did have a sneaky feeling that it might be the drugs that were affecting my eyesight.

But even when the drugs wore off I started to have trouble seeing. It was like I had a stencil over my eyes, with the added effect of flashing lights in my peripheral vision. At work I began to walk into desks, and not see things that were left on the floor. I was always tripping over parcels or walking into people and – worst of all – falling down or missing steps. I felt like a malfunctioning robot. What the hell was wrong with me all of a sudden?

It bothered me enough finally to go to an optician, who diagnosed a brain tumour. Luckily, he was wrong. But he did make an appointment for me at the Moorfields Eye Hospital, where I was diagnosed with something much worse, in my opinion – Retinitis Pigmentosa (RP). How ungrateful is that? Gratitude did not come easy at 25: in fact, gratitude did not come easy to me ever. RP, sometimes called the "terrifying night-blindness disease", is a progressive deterioration of the light-sensitive cells of the retina. It will slowly narrow my field of vision until there is nothing left. It sounded like a B-movie horror script. The hospital staff were efficient and (I thought at the time) totally uncaring about my position as a high-flying, good-looking chick who had been tragically diagnosed with a disease that ate my eyesight. I may not have had any gratitude, but I made up for it with a lot of self-pity.

At the hospital, Professor Bird dropped stinging liquids into my eyes and shone piercing lights into the backs of my retinas. My mother sat outside blaming herself – right after she blamed my father. My boyfriend stood next to me, probably believing there was a God for the first time in his life and that I was getting my comeuppance for my infidelities. I sat in a couple of chairs one after the other, and was finally called in for the RP sentence. Professor Bird probably broke the news to a hundred people that week or that month, but for me it was a smash on the head and the end of the world. He said that if I was having any problem understanding anything I could talk to their social worker, Barbara. I sat next to Barbara and her golden Labrador, complete with harness. I have no idea what she said, because I just cried and cried. All I could understand were the words "blind" and "dog".

I went home and decided to ignore everything I had just been told. I did more drugs. I smoked more cigarettes and I was more unfaithful. I had a rage in me that I could not and did not want to contain. I told some friends, who marvelled at my bravery and refused lifts home in my car. Eventually the car had to go; I couldn't bear the thought of hurting anyone and I constantly worried about not seeing a child in the road. Somewhere along the line I started to grow a conscience, and after that happened my wild days were numbered.

It took me another 10 years to return to Moorfields. My eyesight hadn't really got worse, but my sensitivity to light, especially sunlight, had become much more pronounced. Professor Bird advised dark glasses and a baseball cap, both of which I took on board. The glasses were Christian Dior, obviously. The cap? Well, that was a Louis Vuitton sun visor. The increased sensitivity was due to lace-like cataracts slowly spreading across my eyes, a side-effect of my RP. With each new diagnosis I fell into the depths of panic and despair. I still haven't managed to escape the fear that sits in my stomach with each follow-up appointment. I expect the worst and hope for the best. Fingers crossed stuff.

RP is my dirty little secret. My closest friends and family know, but I don't tell everyone. I guess they just think I'm really clumsy. I sometimes forget to look down and miss a step, or I get excited about a film I've seen or a story I'm writing, wave my arms around and hit someone in the face. There are a hundred opportunities for comedy with RP. I have been in so many positions where I've offended the fragile egos of the fashion pack by not saying hello because I haven't seen them. Waiters hold out menus for me for ages. I have 10 degrees of vision and the standard is 80 degrees – you work it out.

I have got used to "seeing" in a different way. I marvel at people's eyesight and how much detail they can see. It is amazing, and I know that I only cherish it because mine is fading. I have learnt to take things slowly and swallow any pride that might stop me asking for help. I get to hold my friends' hands in the dark or when we're in a hurry because I can't register objects as quickly as they can. I like holding someone's hand, and I understand that my friends like to hold my hand too.

It has been a long and rocky road to get anywhere near accepting that I have this disease, let along doing anything about it. I take 500mg of Diamox every night to combat the pressure that builds up in the back of my eyes and reduces my vision even further. Apparently, it's a drug mountaineers use to acclimatise themselves to high altitude, which is always good to know.

Here's a list of things I have learnt since being diagnosed. You will be loved even though you have RP. You will be fancied even though you have RP. High-heeled, open-toed shoes are a bit of a risk, but a risk worth taking. You need to carry a torch with you at all times; the lights go out in the weirdest places at the most unexpected times. Your hearing gets better and your sense of smell becomes one of the greatest pleasures of life. You don't get to see the stars any more, but you do get to hold strangers' hands. You will never see anything out of the corner of your eye again, which is no big deal. You will need to get used to saying sorry; it costs nothing and it takes the heat out of the person you have just stepped on – but also to be aware that there are some miserable bastards out there who will just swear at you and scowl no matter how much you say sorry. You will have untold bruises and bumps about your person for the rest of your life. You will get to see how gentle people can be with you, and how much they care.

Whenever I go to Moorfields now I feel grateful that I can still get there on my own. I can read all the signs, but that strip lighting in clinic 12 blinds the pants off me. I wait my turn without tapping my feet, and if I hear a new person coming in with the same symptoms as me, I will myself to smile, just to let them know they are going to be OK. RP is a really shitty disease, but it is liveable. Not just liveable; it is actually enjoyable once you get the hang of it.

British Retinitis Pigmentosa Society; helpline 01280 860363

What is Retinitis Pigmentosa?

There are many types of Retinitis Pigmentosa, and symptoms vary, but the most common type begins with difficulty in seeing at night or in poor light. The disease is progressive and the field of vision gradually decreases, resulting in the condition often referred to as "tunnel vision".

* RP is usually passed on genetically and affects 25,000 families in the UK.

* The cause may be failure of the retina's rod cells, the cone cells or, in some cases, a failure of another part of the retina. For this reason, RP is regarded as a group of disorders.

* Retinal degeneration will not always lead to blindness, though in some cases there will be total loss of vision. In other cases, some small degree of usable vision can be retained into old age.

* As yet, there is no cure for RP, but research into the causes of its different forms is progressing well and many of the genes responsible for the various forms of the disorder have now been isolated. It seems likely that the first few treatments for Retinitis Pigmentosa will emerge for trial during the next few years.

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