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I'm 33 Years Old and I'm Gradually Going Blind

I don't fear blindness, per se – just as I don't fear the concept of mortality. The horror is specific: I dread not being able to see you seeing me. It's vain and it's visceral.

I started losing my sight the moment someone put a label on my clumsiness. It was 2006 and I was 24. Before then, I fell into ditches, knocked over bar stools and failed to spot hands offered up for shaking, but it wasn't medical, it was just me: inept and socially awkward. When the eye doctors got involved, suddenly my identity got a long-winded adjunct: retinitis pigmentosa. Which of course means nothing to anyone.

Few people have heard of the condition, despite it being the most common cause of blindness among working-age Brits. "I have this thing called RP," I try to explain. "Sometimes I can see fine, at other times I walk headlong into walls." But it gets complicated and takes too long. In short: RP is a genetic disorder that causes the retina of the eyes to self-destruct – no one knows why – causing night-blindness, increasingly untrustworthy peripheral vision and, eventually, in some cases, complete blindness. If we met, you wouldn't realise anything was wrong; I'd just be an ungracious weirdo shunning your handshake.

They revoked my driver's licence shortly after I was diagnosed. It seemed a bitter blow at the time, but was also, I see now, a blessing. I was working as staff writer on a laddish motorcycle magazine and convincing no one as a biker lad. Occasionally I'd tear along, revving raucously and relishing the fuck-you-ness of it all, but more often than not I felt out-of-place, imperilled and sure only of my imminent mangledness. Riding in the dark, I'd squint and do my best to follow the white line. The problem wasn't just dying retinas, it was a more general dying inside. These days I gladly take the train.

As part of the diagnosis, they put a clicker in my hand, stuck my head in a machine and told me to watch for tiny flashing lights in my peripheral vision. The machine made a pre-emptive buzz so I knew when the light was about to flash, but that didn't help me see it. What seemed like hours later, having not yet hit the clicker once, the optician's furrowed brow boring into my back, I realised that no one has flunked a game this badly since we gave granny a go on Minecraft three Christmases ago.

A scan of the author's peripheral vision test results (the solid blue dots are the scotomas)

Thankfully there wasn't a leaderboard to record my all-comers worst score, but I did get a print-out showing my scotomas (from the Greek skotos, meaning darkness), my patches of "missing" peripheral vision. Dark isn't how they appear to me, though, and they haven't so much gone missing as gone mental.

Where my retinas are failing, my brain fills in with visual white noise, encircling my good vision, the unaffected central bit, with an indistinct swathe of manically flashing, shimmering blurriness. This made-up sparkly shit makes it hard to decipher the real content of any given scene. Shadows leap out at me like projectile slabs of stone, while pull-along suitcases prowl unseen like ghost-dogs behind their Machiavellian masters. I'm never quite sure what I can and can't see – until, that is, the tedium of foreboding is broken by the sound of my body hitting something hard, followed by pain and embarrassment.

That's the worst part: being constantly initiated into new realms of uncertainty. Then again, what doesn't kill me reminds me I'm kill-able, and that's valuable. Uncertainty creeps into view like an education in – or at least a metaphor for – mortality. Beyond the age of about 30 – I'm 33 now, the age Jesus was when the bad shit started happening to him – the body begins to lose its vitality. Tissues regenerate but less reliably, no longer dependable, ever on the brink of losing control and throwing a tumorous tantrum or letting hair fall out or grow in ridiculous places. I'm taking nothing for granted. My eyes show me my fate every day: fuzzy, full of jeopardy, yet shimmering.

I don't fear blindness, per se – just as I don't fear the concept of mortality. The horror is specific: I dread not being able to see you seeing me. It's vain and it's visceral. If desire were to fade, what then, pleasure too? And without pleasure, what's left? Never mind great books and sublime vistas; I can't bear to imagine losing the smiles, the lips and eyes, the blushes and the buttocks. It's an anxiety like any other: centred on sex. To see or not to be, that is the question.

There is no prognosis. "Every case is different," they tell you, "that much we know. There might be a cure one day, it's hard to say." Deterioration is the only guarantee. When I look in the mirror, I can't see my whole face any more, just my eyes and nose. I let myself go and imagine living long ago, 160 years or more – before Dr Franciscus Donders first uttered "RP". Was I, the inexplicably clumsy, darkness-averse Victorian, worse off for not knowing? Yes! The benefits of diagnosis come back to me: concessionary rail travel, and an excuse.

RP is hardly a diagnosis. The doctors admit, if pressed, that it's just a catch-all term used to lump together a whole range of diversely rotting retinas. To be fair to the scientists, though, they have got less flaky since the invention of genetic screening. The genomics wonks are sifting through millions of potential DNA coding errors, cross-referencing and identifying each of the many mutations that cause RP symptoms. A tiny typo on a single gene is all it takes to spell death for the retina. The level of detail is mind-blowing, yet gallingly inconsequential.

I supplied a blood sample for screening years ago, and last month finally the result came back. They had (eureka!) found my faulty gene: it is USH2A, I was told, which encodes the protein usherin. Meaning what? "At position 308, there's a GCCA that shouldn't be there, and an A that should be a G at 3358." Oh, right. I tried to imagine the chaos that could ensue from replacing Gs with As... hearing "a rave" every time someone said "grave". It soon dawned on me I was none the wiser.

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Is this screening result a breakthrough or just another long-winded label to put on my stumbling tendency? In terms of understanding how quickly my eyes are likely to deteriorate – never mind putting them right – the scientists have to concede a blind-spot.

"So far we're rubbish at looking at the specific mutation and predicting the severity of the disease," admits my geneticist friend, Richard. "We don't have enough good data, as most of these mutations are really rare."

It's like looking for a needle in a haystack, finding it decades later and realising, 'Damn, we don't have any thread, and we don't know how to sew.'

Sight loss has taught me that no picture is ever complete. My faithless eyes won't let me forget that there is always something unseen or unseeable waiting to trip me up. Whether it's a blind-spot, illusion, self-deception, a quirk of biology or the brain playing tricks, few things are only what they seem. Seeing isn't believing, it's a reckoning with doubt.

@DeeBeeFree

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