I didn’t take my diabetes seriously. I went at it quite impressively and ignored all the advice I was given about looking after yourself, regularly checking your blood sugar and having injections at the right time. I didn’t go easy on the sweet and fatty stuff; I drank and I smoked. I put my sod-it attitude down to being patronised by one of my consultants as a teenager, but by my early twenties, I had become progressively worse. Who wants to get out of bed at 8am to give yourself a breakfast injection when you’ve been out on the tiles the night before? At drama school, like a typical student, I’d spend my last fiver on another drink and a packet of fags rather than food.
Once I started working, common sense gave me a wake-up call and I started being a bit more sensible. I also began going out with Dan, who had a knack of suggesting that I should do things, rather than having a go at me to do them. By then, though, the damage was done.
I had been told that eye problems were a possible complication of diabetes, but of course I’d always thought this was something that happened to older people. One autumn day in 1999, after a night in the pub with friends, I awoke to what I assumed was a hangover. When I opened my eyes, I could see a ribbon of blood trailing across my line of vision. I wasn’t overly concerned, but when it didn’t go away after a couple of days, I went to an optician, who referred me to an eye consultant, who diagnosed advanced diabetic retinopathy.
I was shocked, but still believed nothing serious was going to happen. However, after a series of laser treatments in spring 2000, I noticed my eyesight was getting more blurry; I had difficulty focusing and reading.
The changes were so rapid, I didn’t really have time to think about what was happening. Then it reached the point where I had to stop working, as I couldn’t see my computer screen. The seriousness of my situation began to sink in, but I still didn’t think I was going blind. An aggressive session of laser treatment caused complications and it finally happened. Everything came crashing down.
I remember sitting on the stairs at home as the thought of blindness slammed into my brain. I sobbed as if I was five years old and the world was going to end. I’m not usually a negative person, but after a few days of tears, my GP prescribed antidepressants, which basically put me to sleep. After about a month, I wanted to get out of cloud-cuckoo-land, so I stopped taking the pills, although I guess they served their purpose in getting me through a certain stage. I was then capable of thinking rationally about what I needed to do.
Over the following year, my sight faded. My birthday is in summer, and by my 25th, all I could see was light, and dark outlines of people and furniture. Just before Christmas, I woke up one morning, looked to Dan’s side of the bed, where I had been used to seeing a vague perception of a light bulb, and saw absolutely nothing. That was my lowest point. I don’t know how, but I managed to hold it together until Dan went to work so as not to give him anything else to deal with. Then I rang my mum. Looking back now, it was stupid that it hit me so hard then, as the day before, I had barely been able to see anything — but at least there had been something. I had come to the end of the game.
Strangely, that morning was the last of the worst of it. Once I had lost the capacity to see, a different part of my brain kicked in and I changed the way I approached situations, making them easier to deal with. Rather than trying to peer round furniture I could barely see, I started to feel my way across a room. I now can’t remember what it’s like to see where you’re going. I feel as if I live in a virtual reality: when I’m in a room, my brain fills in a picture, creating an image of the table I can feel, the chair I am sitting on, my legs outstretched in front of me.
The only thing I seriously worry about is what my eyes look like. I no longer have any retina, so my irises are open wide to let in as much light as possible. My friends say it doesn’t look too odd — like petrol on water, a kind of iridescent reflection of light. But I can’t wholly believe them. I think they are just being nice. Would they really tell me something upsetting?
The weirdest thing is not being able to remember what I look like. The closest I can get is thinking of what my sister looks like, as I know we are facially similar. My memories of other people are fading too. I find it easier to think of them in a certain place than to picture them in my head, but that is how they looked at least six years ago, not now.
As I am bloody-minded, my lack of sight doesn’t really get in the way of doing anything these days. Obstacles only stop you as far as you let them. You may need more determination and a better sense of humour than the average person, but that’s all. I go partying, I go clubbing, I go to the cinema. I am head of a department at an internet company, and I am doing an Open University degree in computer science. I scan my post into my computer, which reads it out to me, along with e-mails and HTML. One thing I really miss is reading, which is terribly frustrating. I was never without a book in my bag before, and I would read all the time. Now I’m restricted to what is available on audio format, which is often abridged.
My friends have somehow managed not to treat me any differently. If I trip over, they will ask me if I am drunk again, or they’ll nick my chocolate from under my nose and say: “You didn’t see that, did you?”
My blindness gets the same level of stick as any other trait, like having ginger hair or being too skinny. A couple of friends will quickly follow up questions like “Did you see... ?” or “Have you read... ?” with an apologetic “Oh, sorry”, but it just makes me giggle.
Dan, who I had been with for a few years when my sight started to fail, never sat down with me to talk about what was going to happen. We dealt with each day as it came. You can’t go through something as monumental as this, come out the other side together and not be stronger for it. There is an incredible amount of trust in the knowledge that he is there if I need bailing out of a situation or cheering up.
It must have been a scary situation for him, but he is terribly courageous. There were moments when he would say that he didn’t know what I needed him to do, but that was only once or twice in the whole year my sight was going. His calm stability has never wavered.
My epiphany came about three years after I lost my sight. It occurred to me that I hadn’t thought about being blind for two or three days. Realising my life was swimming along quite well without any thought of my blindness was a revelation. I guess this was the point when I accepted it properly.
I have also come to terms with the fact that my blindness is my fault, but it took a few years before I could think about it without a lurch in my stomach. It’s still not something I like to discuss, but let’s face it — if you behave like an idiot, you face the consequences.
For information about the RNIB campaign to end avoidable sight loss, call 0845 766 9999 or visit www.rnib.org.uk
