Hugh Linehan: My right eye is now failing too. The world is slipping away, just a little, just enough to notice

Irish Times

3 days ago

As a child, I used to sneak into my father's study to leaf through his books on cinema. Fellini. Bergman. Kubrick. Hitchcock. It felt like trespassing into a world of illicit imagery and adult mystery. These volumes weren't all dry theoretical texts. They were illustrated, full of blurry black and white stills, images from strange films I'd never have been allowed to watch at the time. Some of them I didn't even know by name, but the images etched themselves into my memory with the precision of dreams. Again and again they returned to one motif: the eye.
There was the infamous blade slicing open an eyeball in Un Chien Andalou (1929), a scene that retains the power to provoke a full-body flinch nearly a century after it was first projected. Marion Crane's wide, disbelieving stare as her lifeblood swirled down the shower drain in Psycho (1960). Alex in A Clockwork Orange (1971), lids pinned back as he was subjected to his regime of aversion therapy. It was the eye as portal, as vulnerability, as violence, as punishment.
None of these images are comforting. And in retrospect, I wonder if my uneasy fascination with them, and the squeamishness I have always had about anything getting too close to my own eyes, has something to do with the fact that I've never had two working ones. Like Sauron, albeit with somewhat less malice or magical powers, I have always depended on just the one. My hopelessly shortsighted left eye is amblyopic, or what people used to call lazy, to the point of uselessness.
But now my right eye is failing too.
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Not entirely. But enough that I can no longer read printed books, documents or newspapers. Enough that I find it difficult to recognise faces, even those I know well. Enough that the world has become, gradually but inexorably, something I have to navigate more slowly and more carefully. The terrain has changed, and I am having to learn how to move through it all over again.
There are good reasons, of course, why evolution equipped most of us with a spare eye, not least when it comes to judging depth and distance. My personal experience is that these reasons include having the ability to play tennis without embarrassment or eat soup without incident. But for the most part, one (mildly shortsighted) good eye has served me well enough over the years. But it did leave me without a safety net.
Despite a lifelong fascination with image-making that has included stints as an illustrator, film worker and movie and TV critic, I never really paid enough attention to how vision actually works. The lens at the front of the eye focuses light on to the retina at the back. There, a thin layer of photosensitive cells converts the light into neural impulses that the optic nerve transmits to the brain. The brain, performing its usual miracles, assembles those signals into a coherent picture. And we call that picture 'reality'.
At the very centre of the retina is a five-millimetre-wide area called the macula. It's packed with light-sensitive cells and is responsible for our central vision. It allows us to read, to recognise faces, to distinguish colour and detail. It's also where my trouble lies. On the ophthalmologist's screen, blown up to an uncomfortably large scale, my macula looks like a faraway planet: a red disc with pale, mottled areas near the centre. These blotches are now my terra incognita, where the layers of cells are breaking down and not being replaced. A kind of biological erosion is at work, like a carpet being worn down to the threads.
Hugh Linehan: 'These days I smile vaguely at anyone who passes me in the office. They could be a close colleague or a complete stranger, but it seems safer to be friendly than risk giving someone the cold shoulder.' Photograph: Bryan O'Brien
The name for this irreversible process is macular degeneration, and it's one of the most common causes of sight loss in the developed world. The age-related form is relatively well known, especially among older people. But it can also be genetic or associated with other conditions such as diabetes. In my case, it turns out to be inherited.
I'm 62, the sort of age that looks young from the vantage point of 85 and ancient from the perspective of 25. Still, it's on the early side for age-related macular degeneration. So the doctors dug a little deeper. A DNA swab was sent to Finland, revealing a mutation in a gene called PRPH2, which produces proteins in the retinal cells. Apparently, this gene doesn't always do what it's supposed to do.
None of this is entirely comforting, especially since no one in my family, as far as I know, has had these symptoms. (My siblings and children are now welcome to be tested if they so choose.) But it does provide a kind of explanation. More importantly, it adds a little more information to the worldwide project of genetic puzzle-solving that will hopefully lead to new treatments and therapies. And, more practically, it allows me to start making adjustments.
These days I smile vaguely at anyone who passes me in the office. They could be a close colleague or a complete stranger, but it seems safer to be friendly than risk giving someone the cold shoulder. I no longer exercise my sacred birthright as a Dubliner to jaywalk, as the gaps in my field of vision mean I could easily miss an approaching vehicle. Instead, I wait stoically at intersections, relying on the green man and increasingly on the electronic beep. I carry a nifty little device that combines a torch and a magnifying glass, which allows me to read printed material such as price tags and receipts.
Mr Magoo, the once-beloved cartoon character, has long since been consigned to pop culture's naughty step, alongside all the other ableists, racists and sexists. But I now better understand his predicament. There is a particular kind of comedy that emerges from misperception, though in real life it can be less amusing. I have said hello to empty chairs. Attempted to pour coffee into upside-down cups. I misread expressions. I fail to notice cues. These new, surprising social awkwardnesses pile up on top of all the old familiar ones.
There are other losses, large and small. I can no longer follow the action in a football match or pluck a book from the shelf to check a reference. I deeply miss appreciating a film or a painting in the way its maker intended. Professionally, I feel the diminishment too. I once prided myself on having a 'good eye' for a photograph, a composition, a page layout. It was an important part of what I brought to the job. These days, not so much.
And yet, something unexpected remains. One of the things that sight is supposed to give us – perhaps the most important – is human connection. A century of research tells us that eye contact, facial expressions and micro-gestures, play a crucial role in how we communicate. The shift to digital and remote communication has stripped away much of this subtlety, to our collective detriment. Or so the theory goes.
Hugh Linehan whose left eye is amblyopic. He is now experiencing macular degeneration in his right eye, what he once called his 'good eye'. Photograph: Bryan O'Brien
But my experience doesn't entirely bear that out. There are lapses in understanding, of course. I sat recently across from a podcast guest, someone for whom emotional intelligence is part of their personal brand. I could sense that they were giving me 'a look', but I had no idea what it meant. I was going through my new routine of taking my glasses off and putting them on again, which probably looked like an affectation. The usual feedback loop was broken. But we still had a conversation. Maybe I was just overthinking it.
If, like me, you've ever been advised that for your own psychological wellbeing you need to spend less time trapped in your own head and more time engaging with the actual world, then the prospect of losing one of your senses presents a particular kind of challenge. The world is slipping away, just a little, just enough to notice.
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And yet, I'm not going blind. Macular degeneration affects central vision, not peripheral. A helpful information sheet advises me, rather grimly, I feel, that I 'will always be able to see sufficiently to walk around your house and your garden'. Another one says more encouragingly that most people 'can also make their way to town and do the shopping and other tasks with ease'. It's not the reassurance I might have wished for in my youth, but at this stage, I'll take it.
The greatest moment of relief comes in mid-May when Emma Duignan, one of my two excellent and empathetic ophthalmologists (the other is Max Treacy), says the words I most need to hear: 'You'll always be able to read.' Not on paper, and the screens may need adjusting. The text might even grow to monstrous sizes. But the act itself – the miracle of text becoming meaning – will remain within reach.
Jorge Luis Borges
, whose vision was poor from childhood, lost his sight completely at the age of 58, having just been appointed director of the National Library of Argentina. He was surrounded by millions of books he could no longer read. In his essay, Blindness, he explored his condition not as a tragedy, but as a kind of destiny. Borges is the melancholic, ironic laureate of vision loss. I find his writing on the subject comforting and intimidating in equal measure. He described his world not as darkness, but as a 'greenish, cloudy mist', a perceptual veil rather than a void. For 25 years, he lived within that mist and continued to write with astonishing clarity.
I cannot claim anything so profound. But I take some solace in the fact that unlike Borges, who died in 1986, I live in a time when sight loss is not what it once was. Surgical advances have transformed the lives of millions. Cataracts can be removed in half an hour. Laser treatment has liberated people from Coke-bottle lenses. Genetic research is moving with startling speed, hinting at future therapies that once seemed like science fiction.
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And then there is digital technology. Audiobooks, screen readers, text-to-voice applications – anything can now be turned into robotic but perfectly intelligible audio within seconds. Admittedly, the experience of 'reading' in this way is different. It's slower, less immersive and rather less satisfying. But it's still reading, of a kind. And it remains a bridge to the world of ideas when my poor declining eye can't take the strain of a screen any more.
A recent article in the New Yorker explored the new generation of assistive spectacles for deaf people that can turn conversations into real-time subtitles that unspool across the lenses. Would such a thing be possible for sight loss? It seems plausible.
For the moment, though, I am just learning to see in a new way. Still in the world. Still fumbling and stumbling. Not able to see where I'm going, but still pressing on.