How my life was PLUNGED INTO DARKNESS
Are you afraid of the dark? What if you faced the prospect of spending the rest of your life in blackness? Not because of blindness, or some cruel punishment, but simply because retreating from the light is the only option you have left. Because your only hope is to black out the windows, pull down the blinds, place a rolled-up towel along the crack at the bottom of the door and accept that the world outside is now just somewhere for other people; that you are a ‘girl in the dark’.
It sounds unimaginable, the stuff of nightmares. But that was exactly what happened to Anna Lyndsey, a successful civil servant in a flourishing new relationship, who over the course of several months helplessly watched her world fade to black.
It began when the light from her computer screen caused a burning sensation on her face. And then it got worse… and worse. Fluorescent strips, light bulbs, sunlight itself – all triggered the same blaze across her skin.
Doctors struggled to explain what was happening to her, but it was clear she couldn’t fight it. Every time she tried, the light – and the pain it caused – won. Her only refuge was her blacked-out bedroom: a sanctuary, but also, she suggests in her book Girl In The Dark, a place of confinement, an oubliette – a place to be forgotten.
Ten years on, Anna (a pseudonym), whose remarkable memoir of her experiences with this extremely rare condition has just been published, is speaking to me on the phone from her sitting room. She sounds upbeat, jovial. The curtains, she says, are open.
‘I can see the sun outside and I hope to go for a walk just about sunset this evening.’ She is working with a nutritionist and describes her condition as ‘middling to good’. Things are looking up.
There have been improvements and setbacks before. In fact, she keeps a graph – plotting time against light sensitivity – that maps her rollercoaster progress through the last 10 years. It reveals highs, such as a caravan holiday in March 2009, and the very worst troughs, when she has been confined to the dark, her life compressed into a black hole, a singularity.
But how has she got this far at all? When your skin suddenly develops such an extreme sensitivity to light, threatening your job, your relationship and even your life, how do you come to terms with the shock waves? And how can you bear to retreat into complete darkness for the first time? ‘When you’re in an absolutely extreme state and your skin is burning and it just keeps getting worse and worse, which is the situation I was in back in the early summer of 2006, you will literally try anything and overcome any antipathy you might have to blacking out a room,’ she explains. ‘It was horrible when I was doing it and I was looking through the last gaps in the window and wondering whether I was ever going to see the outside world again, but the choice between the intensifying pain and that was a no-brainer really.’
And even when things are good, there’s the nagging anxiety that they may cease to be. ‘There’s always this fear [when the symptoms get worse again] that this time it will be forever,’ she says. ‘That’s the really terrifying thing. But now I’ve been around the roundabout several times it’s easier to say to myself, “It’s not forever; you will start to come out of this again.”’
Anna is clearly stoic – and humorous, too, which can’t hurt when you’re dealing with a chronic condition. And it is clear that her partner, Pete – first described in the book as resembling a ‘craggy blond vampire, complete with deadpan humour and slightly pointy teeth’ – has played a key role in getting her through.
He’s absolutely amazing,’ she says. ‘I probably wouldn’t still be here if it weren’t for him. He gave me sanctuary in the first place when I lost my job, then put up with me when I blacked out his bedroom.
‘It [adversity] can give you that sense of it being us against the world, but the downside is not being able to do really normal things together. You can’t go to restaurants or the cinema. You can’t go to weddings as a couple. In fact, we met going on long country walks together. We can’t do that now.’
Lovemaking is also awkward when everything must be done in pitchblackness. It requires ‘procedures’. ‘James Bond never had these difficulties,’ Pete grumbles at one point.
Anna has had the support of friends and family. Word games and talking books also helped. SAS stories proved a firm, if unexpected, favourite. ‘Talking books took me to lots of places I would never have gone before,’ she says. ‘I couldn’t be fussy [about what I read], as I was a very heavy user. I really got into Andy McNab and Jilly Cooper.
‘I also listened to Dracula in the dark, the original classic by Bram Stoker, and it was absolutely fantastic. It scared me witless. Strangely, I quite related to Dracula himself. Particularly when I got a bit better and I could go out at dusk and dawn, and I had to look in my diary every time to see when sunrise or sunset was. I couldn’t cope with much light, so I had to ensure that I was back in the house by sunrise.
‘There’s this scene at the end of Dracula where they’re chasing his coffin through the mountains and they have to get there and kill him before dark, because then he’s going to come out and have all his powers.’
Has she ever had a spiritual revelation in the dark? ‘I have to disappoint people here – I haven’t actually had any massive spiritual insights. What was really interesting to me, though, was what happened when I started to come out, when I could read magazines or wander around the garden at twilight, and I could see colours again and smell the world again. Each of these tiny things was a massively intense experience.
‘Those tiny things that I took for granted before are now completely amazing. When I can go out for walks at sunset, I stand there looking at a tree going “Wow”.
‘Although it does wear off after a while,’ she adds.
And what about her other beliefs? With so much time to think, has she found herself thinking about things in a completely different way?
‘What really changed me was going from someone who worked for the state [in the Department for Work and Pensions] to someone at the mercy of the state,’ she says. ‘It made me think a lot more about the blasé way regulations are made without necessarily thinking about the human impact.’
Anna has faced unfathomable hardship over the last 10 years. Despite it all, though, is she any less happy?
‘The worst times are when I’ve been making loads of progress and I overreach myself, then plunge back down into the dark,’ she says. The future must also be approached with caution. As she writes in her book, ‘My mind is kind – it has become wise in the ways of self-protection. It knows that to permit contemplation of the future is the fastest way to dissolution and despair.’
But that’s not the whole picture. ‘When I am having periods of improvement, I don’t think I am any less happy than I was in the life before,’ she says. ‘It is remarkable. I think people are designed that way.’
There is no end to this story – Anna admits as much herself. She could be cured; she could be plunged back into the darkness. No one knows. ‘“Why me?” is the question of an idiot,’ she writes. ‘The sensible person says simply, “Why not?”’
But while she does conclude that ‘The noblest truth is “There is suffering”’, there clearly is also the hope that we can prevail – no matter how bleak things get. Certainly today, with the curtains open and the sun on her face, it seems that Anna can.
Girl In The Dark, by Anna Lyndsey, is published by Bloomsbury Circus, priced £16.99.
It sounds unimaginable, the stuff of nightmares. But that was exactly what happened to Anna Lyndsey, a successful civil servant in a flourishing new relationship, who over the course of several months helplessly watched her world fade to black.
It began when the light from her computer screen caused a burning sensation on her face. And then it got worse… and worse. Fluorescent strips, light bulbs, sunlight itself – all triggered the same blaze across her skin.
Doctors struggled to explain what was happening to her, but it was clear she couldn’t fight it. Every time she tried, the light – and the pain it caused – won. Her only refuge was her blacked-out bedroom: a sanctuary, but also, she suggests in her book Girl In The Dark, a place of confinement, an oubliette – a place to be forgotten.
Ten years on, Anna (a pseudonym), whose remarkable memoir of her experiences with this extremely rare condition has just been published, is speaking to me on the phone from her sitting room. She sounds upbeat, jovial. The curtains, she says, are open.
‘I can see the sun outside and I hope to go for a walk just about sunset this evening.’ She is working with a nutritionist and describes her condition as ‘middling to good’. Things are looking up.
There have been improvements and setbacks before. In fact, she keeps a graph – plotting time against light sensitivity – that maps her rollercoaster progress through the last 10 years. It reveals highs, such as a caravan holiday in March 2009, and the very worst troughs, when she has been confined to the dark, her life compressed into a black hole, a singularity.
But how has she got this far at all? When your skin suddenly develops such an extreme sensitivity to light, threatening your job, your relationship and even your life, how do you come to terms with the shock waves? And how can you bear to retreat into complete darkness for the first time? ‘When you’re in an absolutely extreme state and your skin is burning and it just keeps getting worse and worse, which is the situation I was in back in the early summer of 2006, you will literally try anything and overcome any antipathy you might have to blacking out a room,’ she explains. ‘It was horrible when I was doing it and I was looking through the last gaps in the window and wondering whether I was ever going to see the outside world again, but the choice between the intensifying pain and that was a no-brainer really.’
And even when things are good, there’s the nagging anxiety that they may cease to be. ‘There’s always this fear [when the symptoms get worse again] that this time it will be forever,’ she says. ‘That’s the really terrifying thing. But now I’ve been around the roundabout several times it’s easier to say to myself, “It’s not forever; you will start to come out of this again.”’
Anna is clearly stoic – and humorous, too, which can’t hurt when you’re dealing with a chronic condition. And it is clear that her partner, Pete – first described in the book as resembling a ‘craggy blond vampire, complete with deadpan humour and slightly pointy teeth’ – has played a key role in getting her through.
He’s absolutely amazing,’ she says. ‘I probably wouldn’t still be here if it weren’t for him. He gave me sanctuary in the first place when I lost my job, then put up with me when I blacked out his bedroom.
‘It [adversity] can give you that sense of it being us against the world, but the downside is not being able to do really normal things together. You can’t go to restaurants or the cinema. You can’t go to weddings as a couple. In fact, we met going on long country walks together. We can’t do that now.’
Lovemaking is also awkward when everything must be done in pitchblackness. It requires ‘procedures’. ‘James Bond never had these difficulties,’ Pete grumbles at one point.
Anna has had the support of friends and family. Word games and talking books also helped. SAS stories proved a firm, if unexpected, favourite. ‘Talking books took me to lots of places I would never have gone before,’ she says. ‘I couldn’t be fussy [about what I read], as I was a very heavy user. I really got into Andy McNab and Jilly Cooper.
‘I also listened to Dracula in the dark, the original classic by Bram Stoker, and it was absolutely fantastic. It scared me witless. Strangely, I quite related to Dracula himself. Particularly when I got a bit better and I could go out at dusk and dawn, and I had to look in my diary every time to see when sunrise or sunset was. I couldn’t cope with much light, so I had to ensure that I was back in the house by sunrise.
‘There’s this scene at the end of Dracula where they’re chasing his coffin through the mountains and they have to get there and kill him before dark, because then he’s going to come out and have all his powers.’
Has she ever had a spiritual revelation in the dark? ‘I have to disappoint people here – I haven’t actually had any massive spiritual insights. What was really interesting to me, though, was what happened when I started to come out, when I could read magazines or wander around the garden at twilight, and I could see colours again and smell the world again. Each of these tiny things was a massively intense experience.
‘Those tiny things that I took for granted before are now completely amazing. When I can go out for walks at sunset, I stand there looking at a tree going “Wow”.
‘Although it does wear off after a while,’ she adds.
And what about her other beliefs? With so much time to think, has she found herself thinking about things in a completely different way?
‘What really changed me was going from someone who worked for the state [in the Department for Work and Pensions] to someone at the mercy of the state,’ she says. ‘It made me think a lot more about the blasé way regulations are made without necessarily thinking about the human impact.’
Anna has faced unfathomable hardship over the last 10 years. Despite it all, though, is she any less happy?
‘The worst times are when I’ve been making loads of progress and I overreach myself, then plunge back down into the dark,’ she says. The future must also be approached with caution. As she writes in her book, ‘My mind is kind – it has become wise in the ways of self-protection. It knows that to permit contemplation of the future is the fastest way to dissolution and despair.’
But that’s not the whole picture. ‘When I am having periods of improvement, I don’t think I am any less happy than I was in the life before,’ she says. ‘It is remarkable. I think people are designed that way.’
There is no end to this story – Anna admits as much herself. She could be cured; she could be plunged back into the darkness. No one knows. ‘“Why me?” is the question of an idiot,’ she writes. ‘The sensible person says simply, “Why not?”’
But while she does conclude that ‘The noblest truth is “There is suffering”’, there clearly is also the hope that we can prevail – no matter how bleak things get. Certainly today, with the curtains open and the sun on her face, it seems that Anna can.
Girl In The Dark, by Anna Lyndsey, is published by Bloomsbury Circus, priced £16.99.