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| The medical horror that drives my writing career | The medical horror that drives my writing career |
| (14 days later) | |
| Children ask, occasionally, but I don't think an adult ever has. What do you see with that eye – the bad one? I say: well, you know when you go into a very dark room and shut the door and close your eyes? That. That's what I see. | Children ask, occasionally, but I don't think an adult ever has. What do you see with that eye – the bad one? I say: well, you know when you go into a very dark room and shut the door and close your eyes? That. That's what I see. |
| There's nothing there, just a vaguely electrical disturbance, a dim blank of black and dark red. If I cover my right eye, the eye that still works, and turn the other one towards a candle flame or fireworks, nothing registers. No light, no movement. The eye itself is perfectly healthy, but the pupil won't expand or contract because the optic nerve has atrophied. No information gets through. | There's nothing there, just a vaguely electrical disturbance, a dim blank of black and dark red. If I cover my right eye, the eye that still works, and turn the other one towards a candle flame or fireworks, nothing registers. No light, no movement. The eye itself is perfectly healthy, but the pupil won't expand or contract because the optic nerve has atrophied. No information gets through. |
| This is the hole in my vision. It's a hole I often fall into: bumping into people, doors, shopping trolleys, lamp-posts; tripping over uneven paving stones, kerbs and children's scooters; sending glasses of water flying. Strangers must think I'm clumsy and absent-minded and irritatingly hesitant. I've been given a white stick but I can't bear to use it, though there are times – on unfamiliar streets after dark, or on station concourses during rush hour – when it would probably help, if not as a tool then as a signal. | This is the hole in my vision. It's a hole I often fall into: bumping into people, doors, shopping trolleys, lamp-posts; tripping over uneven paving stones, kerbs and children's scooters; sending glasses of water flying. Strangers must think I'm clumsy and absent-minded and irritatingly hesitant. I've been given a white stick but I can't bear to use it, though there are times – on unfamiliar streets after dark, or on station concourses during rush hour – when it would probably help, if not as a tool then as a signal. |
| I wasn't meant to lose the sight in that eye but it happened, and now the good eye takes the hit. A lot of peripheral vision has gone; colours and lights aren't as sharp and clear as they used to be (though I'm now spared the horror of comparison). I struggle with pale fonts, best-by dates. But it's fine. I can get about. I can read without too much difficulty. I would be delighted if I knew my sight would stay like this, but that's not the way it seems to work. You see where I'm going with this. | I wasn't meant to lose the sight in that eye but it happened, and now the good eye takes the hit. A lot of peripheral vision has gone; colours and lights aren't as sharp and clear as they used to be (though I'm now spared the horror of comparison). I struggle with pale fonts, best-by dates. But it's fine. I can get about. I can read without too much difficulty. I would be delighted if I knew my sight would stay like this, but that's not the way it seems to work. You see where I'm going with this. |
| Fear can be as disabling as loss of vision. For the first year, I ran on pure unadulterated horror. Every morning after waking I would lie there for a moment, unwilling to open my eyes, unwilling to confront what was always fading away (the lettering on Mother's Day cards, the information ticker-taping over the panel on the digital radio), and I would feel it again, fresh and appalling, as the day's adrenaline began to barrel through my veins. This is my life. This is really happening. | Fear can be as disabling as loss of vision. For the first year, I ran on pure unadulterated horror. Every morning after waking I would lie there for a moment, unwilling to open my eyes, unwilling to confront what was always fading away (the lettering on Mother's Day cards, the information ticker-taping over the panel on the digital radio), and I would feel it again, fresh and appalling, as the day's adrenaline began to barrel through my veins. This is my life. This is really happening. |
| I first realised something was affecting my vision in April 2008. It has been all downhill from there: the high daily dose of steroids (we've tried countless other treatments without much luck) seems to be no match for the full force of whatever-it-is, the thing that has taken up residence and bides its time, waiting to eat up the light. My doctor, a distinguished specialist, is fairly confident I have an autoimmune disorder affecting the optic nerves (chronic relapsing inflammatory optic neuritis) but he can't tell me why it started, how to stop it, or why – despite the steroids – it keeps flaring up so destructively. I've come to appreciate his honesty. No false hope. Hope makes you so vulnerable. | I first realised something was affecting my vision in April 2008. It has been all downhill from there: the high daily dose of steroids (we've tried countless other treatments without much luck) seems to be no match for the full force of whatever-it-is, the thing that has taken up residence and bides its time, waiting to eat up the light. My doctor, a distinguished specialist, is fairly confident I have an autoimmune disorder affecting the optic nerves (chronic relapsing inflammatory optic neuritis) but he can't tell me why it started, how to stop it, or why – despite the steroids – it keeps flaring up so destructively. I've come to appreciate his honesty. No false hope. Hope makes you so vulnerable. |
| The one thing he's sure of is that my condition is extremely rare. It's a lonely business, being a medical freak. I sit on the ward listening to people with terrible conditions comparing notes, and on the bad days I feel a little envy: you've found each other, you know what you've got. You believe the treatment you're getting has a decent chance of working. | |
| At first it felt like a series of bereavements. I was losing the future I had so idiotically imagined I was entitled to, but there were other losses as well, and initially they came thick and fast. A low full moon that a relapse rendered dingy as a penny. Blossom that I knew to be the colour of raspberry ripple became a dull beige. I stopped looking up when people said, "Oh, wow, the stars!" | At first it felt like a series of bereavements. I was losing the future I had so idiotically imagined I was entitled to, but there were other losses as well, and initially they came thick and fast. A low full moon that a relapse rendered dingy as a penny. Blossom that I knew to be the colour of raspberry ripple became a dull beige. I stopped looking up when people said, "Oh, wow, the stars!" |
| But that sucker-punch of shock whenever I thought about what was happening to me, that trapdoor into terror: I am happy to find that is unsustainable. You can't live at that pitch for ever. Slowly you come to terms with a new reality. You learn to accommodate it; it becomes normal. And this feels like a reprieve. You are being spared something, and that in itself is worth celebrating. Of course, every relapse revives the fear; but perhaps, even as your world narrows and darkens, you're thinking: this is familiar, I've been here before. | But that sucker-punch of shock whenever I thought about what was happening to me, that trapdoor into terror: I am happy to find that is unsustainable. You can't live at that pitch for ever. Slowly you come to terms with a new reality. You learn to accommodate it; it becomes normal. And this feels like a reprieve. You are being spared something, and that in itself is worth celebrating. Of course, every relapse revives the fear; but perhaps, even as your world narrows and darkens, you're thinking: this is familiar, I've been here before. |
| I try very hard not to anticipate. When I had a sense of autonomy I spent a lot of time worrying about the future, in a busy and superstitious fashion, as if by anticipating the pratfalls I might be spared them. That habit stuck even when I was coming to terms with my powerlessness, and it did me no favours. I thought about the future and what it might hold, and I did not see anything good lying up ahead. Just a sense of the blackness greedily closing in, attacking all the things I held precious. As I was spending so much time in hospital, my work as a journalist was the first to go; but that, I knew, was just the beginning. | I try very hard not to anticipate. When I had a sense of autonomy I spent a lot of time worrying about the future, in a busy and superstitious fashion, as if by anticipating the pratfalls I might be spared them. That habit stuck even when I was coming to terms with my powerlessness, and it did me no favours. I thought about the future and what it might hold, and I did not see anything good lying up ahead. Just a sense of the blackness greedily closing in, attacking all the things I held precious. As I was spending so much time in hospital, my work as a journalist was the first to go; but that, I knew, was just the beginning. |
| I felt myself being diminished in increments. The National Hospital for Neurology and Neurosurgery is where I want to be when things go wrong. Other institutions inevitably remind you of your insignificance. Food is awful, notes go missing. A brisk supercilious GP pretends she knows more than she really does. Doctors discuss your case ("this could be very serious") on the other side of a curtain. A nurse at one of London's main teaching hospitals, a nice man with whom you've had several interesting conversations, makes you sit in a wheelchair and then drags – as opposed to pushes – it along the corridors, as if you are cargo, barely even a person. | I felt myself being diminished in increments. The National Hospital for Neurology and Neurosurgery is where I want to be when things go wrong. Other institutions inevitably remind you of your insignificance. Food is awful, notes go missing. A brisk supercilious GP pretends she knows more than she really does. Doctors discuss your case ("this could be very serious") on the other side of a curtain. A nurse at one of London's main teaching hospitals, a nice man with whom you've had several interesting conversations, makes you sit in a wheelchair and then drags – as opposed to pushes – it along the corridors, as if you are cargo, barely even a person. |
| Confronting my uselessness, my new dependency, I found another way to be free. In my old life, I had never really considered fiction, and even when I found myself writing a novel in 2010 I could hardly bear to acknowledge what I was doing. Sitting around, making stuff up? How silly, how shameful. Who did I think I was? But it felt so good to be writing again. The delight of creating an atmosphere, summoning up personality, and of finding exactly the right word: the things I'd loved most about my old job. But this time, I was also allowed to decide what should happen and to whom. I didn't want to stop. | Confronting my uselessness, my new dependency, I found another way to be free. In my old life, I had never really considered fiction, and even when I found myself writing a novel in 2010 I could hardly bear to acknowledge what I was doing. Sitting around, making stuff up? How silly, how shameful. Who did I think I was? But it felt so good to be writing again. The delight of creating an atmosphere, summoning up personality, and of finding exactly the right word: the things I'd loved most about my old job. But this time, I was also allowed to decide what should happen and to whom. I didn't want to stop. |
| I kept it a secret. At first I worried I wouldn't finish the book; and then, when I had finished it, I worried that no one would be interested in it. I'd seen people's expressions change as they saw me approach, as they steeled themselves to ask how I was, and I didn't want to give them another reason to feel sorry for me. But that book (Alys, Always) found a publisher, and went out into the world, and then I wrote another one (Her). | I kept it a secret. At first I worried I wouldn't finish the book; and then, when I had finished it, I worried that no one would be interested in it. I'd seen people's expressions change as they saw me approach, as they steeled themselves to ask how I was, and I didn't want to give them another reason to feel sorry for me. But that book (Alys, Always) found a publisher, and went out into the world, and then I wrote another one (Her). |
| Maybe this is what I have done with the fear: perhaps I have collected it up, a great dark tangle of dread, and worked it into my books. Both novels seem to be powered by a low-level anxiety, an underlying sense that something's not quite right, and creating this atmosphere under laboratory conditions feels entirely appropriate and delicious. Economical, too: good housekeeping. I'm up to my ears in the stuff, why not put it to some use? My story, my rules. | Maybe this is what I have done with the fear: perhaps I have collected it up, a great dark tangle of dread, and worked it into my books. Both novels seem to be powered by a low-level anxiety, an underlying sense that something's not quite right, and creating this atmosphere under laboratory conditions feels entirely appropriate and delicious. Economical, too: good housekeeping. I'm up to my ears in the stuff, why not put it to some use? My story, my rules. |
| This, then, is where I have all the power. | This, then, is where I have all the power. |
| Sometimes I wonder if I have a ration of sight left, like sand in an hourglass, and one day it will dwindle to a trickle, and then it will just run out. There's nothing like living at the pointy end of a stick to make you focus. Whenever my sight suffers a setback, I seem to be flooded with ideas. There appears to be a direct correlation. I sit on plastic chairs in windowless corridors, waiting to be called for tests and consultations, and while I wait I scribble in my orange notebook. It's escapism, of course, a way of dodging reality, and in some ways it feels a foolish and frivolous thing to be doing; but at the same time, it's necessary. It's the thing that gives me purpose and makes me happy; a good thing to do with the time and sight I have left. | Sometimes I wonder if I have a ration of sight left, like sand in an hourglass, and one day it will dwindle to a trickle, and then it will just run out. There's nothing like living at the pointy end of a stick to make you focus. Whenever my sight suffers a setback, I seem to be flooded with ideas. There appears to be a direct correlation. I sit on plastic chairs in windowless corridors, waiting to be called for tests and consultations, and while I wait I scribble in my orange notebook. It's escapism, of course, a way of dodging reality, and in some ways it feels a foolish and frivolous thing to be doing; but at the same time, it's necessary. It's the thing that gives me purpose and makes me happy; a good thing to do with the time and sight I have left. |
| • Her is published by Weidenfeld & Nicolson. | • Her is published by Weidenfeld & Nicolson. |
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