Losing sight

I don’t know who will read this. I don’t even know why it has suddenlybecome important to write it, but for whatever it’s worth, this is an account of an event in my life that changed everything.

I lost my sight over the course of 12 months from late 1999 to late 2000. It was mostly my fault that it happened. I was diagnosed with Type I Diabetes when I was a little girl. At the time they explained that I would have to eat a precise amount of food each day, and that I would need to inject a precise amount of insulin to handle it. These measurements were reviewed and revised on an annual basis.

Note: Type I Diabetes means your body stops producing insulin and you have to inject it instead. Type II Diabetes (the kind you hear about on the news) means that your body still produces insulin but is unable to absorb it properly, which is why it can often be controlled through diet and tablet based medication instead of insulin injections.

When I was a little older I asked my paediatrician why it had to be this way. I wanted to know why I couldn’t work out how much food (carbohydrate) I was about to eat, measure my blood glucose, and then calculate my insulin dose based on those and other factors. After-all I reasoned, this is what my body would have done naturally, so why couldn’t I emulate that behaviour? To this day I don’t know whether he actually patted me on the head, or whether my sub-conscious has superimposed that memory based on his reply (“don’t be so ridiculous”), but it doesn’t really matter in the scheme of things.

Looking back I understand that was the moment that everything changed. It would take another 15 years for the impact of that moment to be felt, but that was where it all began. That was where the rebellion started.

At some point during my teens I discovered that I could skip an injection without anything terrible happening. It wasn’t something I did intentionally, at least not then, but it made me think I could get away with it from time to time. From then on I did just enough injections to stop anyone from figuring out what I was up to. I stopped monitoring my blood glucose levels almost entirely, and as soon as I was old enough I stopped going to see my doctor for annual checkups.

Throughout my student days I had a riot. I went to drama school where I worked hard and played harder. I smoked, danced, partied, fell in and out of love, discussed Stanislavsky and Brecht until the wee small hours, drunkenly declaimed Shakespeare, and kept on ignoring the fact I was diabetic.

By the time the century was drawing to a close I was working in the tech industry. Quite by accident I had gone to work for one of the UK’s first ISPs in early 1997. Somewhere along the way I taught myself to code and by 1999 was working as a web developer. This was the era of the .Com boom and everyone was having fun. There were pool tables in the office, Nerf guns on every desk, insane parties that the company wrote off against tax, Paul Okenfold was the soundtrack to our lives, and we’d fall out of clubs at 6am and drive to Glastonbury Tor to watch the sunrise just for the hell of it.

One morning in October 1999 I woke up with a hangover. As I looked at my reflection in the mirror I realised I could see a ribbon of blood in my line of sight. As I looked left then right, the ribbon moved sluggishly as though floating in dense liquid. Assuming it was a temporary result of the previous night’s antics, I left it a couple of days before visiting an optician to get it checked out. When I did the optician took one look at the backs of my eyes and referred me to the nearest eye hospital for further investigation.

When diabetes is uncontrolled for a time it causes a lot of unseen damage. It works something like this: When you eat something your blood sugar levels rise and your body produces insulin to convert that glucose into usable energy. If enough insulin isn’t available then the cells in your body are starved of energy and begin to die and the excess glucose remains trapped in your blood-stream. If that wasn’t enough, the excess glucose smothers your red blood cells and prevents them from transporting oxygen efficiently around your body.

One of the ways this damage eventually manifests itself is Diabetic Retinopathy. In an attempt to get enough oxygen to the retina at the back of your eye, your body creates new blood vessels to try and compensate. The new blood vessels are created as an emergency measure and so they’re weaker than they need to be. This means they’re prone to bursting and haemorrhaging blood into the eye — creating visible ribbons of blood like the one I could see. The lack of oxygen to your retina and the accumulation of blood in your eye has the inevitable effect of damaging your sight.

The people at the eye hospital told me I would need laser treatment. This might halt the breakdown of the blood vessels at the back of my eye and enable the remaining vessels to strengthen enough to get the oxygen where it needed to go. It seemed like a reasonable option since my sight was still reasonably good at this point.

Laser treatment isn’t pleasant. It requires an anaesthetic injection into the eye, before a laser is fired repeatedly at the blood vessels at the back. One side-effect of this is that it plays havoc with your retina. If you think of your retina like a piece of clingfilm pulled taut over the open end of a jar, then imagine how it distorts when pressure is applied to it, you won’t be far off the effect laser treatment can have. I remember one round of treatment skewing the sight in one eye around 90 degrees and making everything slightly pink for several hours. Trust me when I tell you that it’s impossible to remain upright with one eye seeing straight and the other 90 degrees out of whack!

Looking back now I realise my consultant knew that laser treatment was almost certainly a futile gesture. Despite this no-one ever came straight out and told me the consequences of having advanced Diabetic Retinopathy, it was always spoken of in terms of progressive deterioration without ever mentioning the logical conclusion of that progression.

I do remember the day I admitted it to myself though. My sight had been steadily worsening over the months and it was a day in the spring of 2000 that it happened. I have no idea what prompted it, but I was walking down the stairs at home when it hit me like the proverbial sledge hammer — I would be blind. Until that moment I had never believed people when they said an emotional reaction could be like a physical blow. I don’t doubt that anymore. With absolute certainty I knew I would lose my sight and that I only had myself to blame. I sat on a step a couple up from the bottom of the stairs and fell apart. I cried like a child. I cried for my lost sight, for all my broken dreams, for my stupidity, for all the books I would never read, for the faces I would forget, and for all the things I would never accomplish.

Having come unravelled I couldn’t pull myself together, and after a few weeks reluctantly realised I needed help. My doctor prescribed anti-depressants that effectively put me to sleep for about 23 hours out of every 24. After six weeks I decided enough was enough and took myself off the meds for good.

A curious thing had happened in the intervening weeks though. Whilst I was asleep my mind appeared to have wrapped itself around the enormity of what was happening. This wasn’t any kind of revelation, but it was a recognition of what I was up against, and that was enough for the time-being.

Over the ensuing months I gave up work as my sight continued to deteriorate, and I stayed at home and tried to keep busy. Most people look baffled when I tell them that going stir crazy was one of the hardest things to deal with about losing my sight. People who know me understand that to me boredom is a fate worse than death (or blindness as it turns out)!

There were days when I raged out of control. Days when I screamed and threw things at the people I loved just because they were there. There was the day I stumbled in the kitchen and up-ended a draining rack full of crockery that smashed into a thousand pieces around me. The days when I demolished a keyboard I could no longer use, or kicked the hell out of the hoover because the cable was so caught up around the furniture I couldn’t untangle it. Days too numerous to count when I bruised, cut, scratched or burned myself in pursuit of everyday tasks, and the rage and the tears would overwhelm me allover again.

That amount of fury isn’t a good thing. It took my relationship with the most important person in my life to the brink of collapse, but fortunately patience is one of his abiding qualities even though I tested it to the limit during those times. My friends and family went through this every bit as much as I did, only they managed it with a degree of grace, humour and affection I was incapable of recognising at the time. Now I know with absolute certainty that if it hadn’t been for their collective love and support, things would have turned out very differently for me.

Towards the end of that year, not long before Christmas, the last of my sight vanished. To think of it now, it seems that I went to bed one night aware of a slight red smudge at the farthest reaches of my vision (the standby light on the television), then woke the next morning to nothing at all. I don’t suppose it happened exactly like that, but it’s close enough.

I do remember being surprised to learn that only 3% of blind people are completely blind. Most have some degree of light perception or even a little usable vision, but I’m one of the few who can see nothing at all, and nothing is the best way to describe it. People assume it must be like closing your eyes or being in a dark room, but it’s not like that at all. It’s a complete absence of light, so it isn’t black or any other colour I can describe.

To offset what would otherwise be an incredibly boring view, my mind obligingly gives me things to look at instead. It shows me a shadowy representation of what it thinks I would see if I could — like my hands holding a cup of tea in front of me. Since my mind is constrained only by my imagination, it rather charmingly overlays everything with millions of tiny sparkles of light, that vary in brightness and intensity depending on my emotional state.

My retinas are long since gone, so no actual light makes its way to the backs of my eyes. This is what gives my eyes their peculiar look — each pupil is permenantly open to its fullest extent in an effort to take in light. Oddly this is the one thing that still makes me feel a little uncertain about being blind, but given that I no longer really remember what I look like, perhaps there will come a time when that uncertainty will fade.

With the last of my sight gone, I discovered something I hadn’t expected. Now I couldn’t see anything, things started to get a lot easier to deal with. Looking back now I realise that was because I stopped trying to look at what I was doing, and started to use my other senses.

I’ll pause at this point to clear up a common misconception — I do not have extraordinary hearing, sense of smell or any other sense. I do pay more attention to those other senses though, so although I’ll often hear a phone ringing when other people don’t, it’s only because I’m devoting more of my concentration to listening than they are.

The next few months were a time of discovery, sometimes painful, often frustrating, but also littered with good memories. I learned how to do chores, how to cook, where to find audio books, how to cross the road, what it feels like to drink too much when you can’t see straight to begin with, and many more things I’d learned once in my life before. The one thing I didn’t do was learn Braille, at least not with any dedication. I simply didn’t have the patience to go back to reading baby books, at a time when so much else was new and strange. I did learn something far more important though.

I discovered something called a screen reader. A piece of software that could be installed on my computer and which would speak on-screen content to me in a synthetic voice. It would even echo my keystrokes back to me as I typed, which was just as well because I suddenly realised I couldn’t touch-type despite having used computers on/off since the early 1980s!

I then decided to enrol on an online course with the Open University. The course was called “You, your computer and the internet”, a subject that was child’s play for someone who had been using the internet for nearly a decade. For someone who could barely use a computer with a screen reader, it was something of a practical challenge though. It took me an entire day to figure out how to log into the course environment, and for a while every new task seemed to take as long. Day by day things got easier though, and by the time I finished the course I was well on my way to regaining an important part of my life. Somewhere along the way I’d also rediscovered my love of learning, and promptly enrolled in another course. One thing led to another, and I eventually graduated with a degree in computer science in 2010.

It’s been 15 years since all this happened. Somewhere along the way I went back to work, and I now have the uncommonly good fortune to be working and collaborating with lots of smart and interesting people, many of whom I’m delighted to call friends.

I still find technology challenging sometimes, because we have yet to reach a time when things are engineered to be accessible as standard. That too is changing.

So life moved on, as life has a habit of doing, and as I celebrated my 40th birthday last year perhaps it gave me cause to reflect.

Originally published at tink.uk.