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Girl in the Dark
Anna was living a normal life. She was ambitious and worked hard; she had just bought an apartment; she was falling in love. But then she started to develop worrying symptoms: her face felt like it was burning whenever she was in front of the computer. Soon this progressed to an intolerance of fluorescent light, then of sunlight itself. The reaction soon spread to her entire body. Now, when her symptoms are at their worst, she must spend months on end in a blacked-out room, losing herself in audio books and elaborate word games in an attempt to ward off despair. It was during this period she began to write this book.
254 pages, Hardcover
First published February 26, 2015
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October 16, 2015
Further Update I can't get this book out of my head. The author was a power freak. Whether it was her husband, doctors, councils, she wanted control over everything. I'm not saying this is conscious, but a physical disease that is so extreme but tests completely normal is ... not normal. And God said, "Let there be light" and she the author said, "No!".
______
Update Just a thought. I read that the author's name is a pseudonym to protect her privacy. She shrouds herself in black, travels in a car that has a lightproof 'tent' inside and goes out only in the gloom to protect her skin. She absolutely refuses to consider various doctor's opinions that her disease is psychosomatic. She does everything she can to keep out the light but refuses to change her life to where she wouldn't need to (like moving to where there is less daylight as I've written below). She says her friends have drifted off partly because she lives in such an isolated place. I just wonder if there isn't some mental ailment of wanting extreme privacy? I'm probably adding two and two and getting five here, but... But a pseudonym for reasons of privacy in a straight non-contentious memoir... I don't know, just made me think.
______
This should have been a really interesting story, and that is why I picked it up. A woman in her thirties (although she always refers to herself as a girl) is stricken with a photosensitivity so extreme that there are only two sufferers at this level in the entire UK.
It started with her face burning from a computer screen so she had to give up her high-level government job and could only go out wearing face masks and hats, looking peculiar. (This is about 2005 when there weren't too many politicised Islamic niqab-wearing women, but enough. She could have put on a burkha and no one would have stared, as she said they did). Eventually the burning sensititivy progressed to her entire body and she lived in blacked-out rooms wearing dark clothes and only going out at dusk and before dawn.
Confined to her house, she cancelled medical appointments, her wedding and visits to friends. She employed an assistant to sit in the next room on a computer, although why she couldn't have used a computer without the screen on or a screen in the next room herself with a text reader is not explained. She tries many treatments from conventional medications to the long-shots like acupuncture and the ridiculous like carrying a crystal. The disease does improve, but then again she relapses and it never entirely leaves her.
So she begins to write this book in the dark with her thumb holding her place. Like it was before technology, like it was the dark ages, well I suppose it was to her.
Up to this point the writing was overblown, word games were described in full with examples, there was never an adjective when two would do. Or an adjective plus a simile and a couple of adverbs. Creative-writing at it's very finest... at least it appeals to blurb writers and some reviewers who almost unanimously praise its 'lyrical prose. To me however, I could live without the 'setting sun sinks luxuriously beneath the foamy pink clouds, its work complete'. That's just padding. Padding because there really isn't much of a story to tell.
I was sorry for the woman. But I didn't like her. I understand her self-pitying attitude, the arrogance not so much. I didn't understand her desire to live as normally as she could without making adapations other than it being dark. She had a light meter, like a camera, which measured her disease as it waxed and waned, at what stage the light would be dim enough for her to go out and garden and when she would need to live in full blackout. If there are alternatives why wouldn't you try them?
She knew that her majority problem with light lay at the blue end of the spectrum (UV light), so I thought she would try red light (entirely non-UV), as in photographic dark rooms, but no. She is ok for a short while with the kind of street lights that use a sodium-vapour technology which produce light from the yellow end of the spectrum. So why not yellow bug-lights? What about moving to the north of Scotland for the winter - there are very few hours of daylight there and no what you might call bright sunlight at all. But nothing. I don't understand this mindset of soldiering through, not exploring all avenues that might lead to a better quality of life, and then complaining about it.
She does get married, late afternoon in a church lit with candles and then a reception in a marquee in the garden of their house. I don't know how it was lit! Here she is talking of how her husband brings her things.
"Roses and apples make up my memories. the roses were cut for me by Pete and glowed darkly in the curtained living room scenting the shadowy air. I would lift the vases to my face and press my nose to the velvety depths and breathe and breathe as if each flower were the mouth of a pipe connecting me to the world. The apples piled up in boxes on the kitchen floor. Enormous, shining warm from the sun, astonishgly perfect, endless. I would go into the kitchen just to gaze. They seemed an unasked for slightly inconvenient miracle performed on the apple tree by a passing angel in randomly benevolent mood unaware of the girl inside the house who would have liked a miracle for herself."
The book was hard for me to read with all the prose described by some as 'lyrical' and 'beautiful'. Maybe I lack a poetic gene? Maybe I read too much non-fiction which tends to stick to the point? To me this is self-indulgent writing that lacks the elucidating flash of inspiration that poetry can have and just fills up space.
It's a 2-star book. Writing about clothing, curtains and cures that didn't work and padding it out with great gobs of flowery prose didn't do it for me. But then 3 stars because although I didn't like her, I do feel great sympathy for the author who really hasn't got much of a life at all. I hope she gets better. I hope her writing does too.
_____
As a conclusion, having thought it over, I do wonder why there was much technology not explored by the author. Why was she so determined to make as few adaptions as possible, other than living in the dark? Why was she so vehemently opposed to the doctors' suggestions that this might be psychosomatic? In other words, did she protest too much?
______
Update Just a thought. I read that the author's name is a pseudonym to protect her privacy. She shrouds herself in black, travels in a car that has a lightproof 'tent' inside and goes out only in the gloom to protect her skin. She absolutely refuses to consider various doctor's opinions that her disease is psychosomatic. She does everything she can to keep out the light but refuses to change her life to where she wouldn't need to (like moving to where there is less daylight as I've written below). She says her friends have drifted off partly because she lives in such an isolated place. I just wonder if there isn't some mental ailment of wanting extreme privacy? I'm probably adding two and two and getting five here, but... But a pseudonym for reasons of privacy in a straight non-contentious memoir... I don't know, just made me think.
______
This should have been a really interesting story, and that is why I picked it up. A woman in her thirties (although she always refers to herself as a girl) is stricken with a photosensitivity so extreme that there are only two sufferers at this level in the entire UK.
It started with her face burning from a computer screen so she had to give up her high-level government job and could only go out wearing face masks and hats, looking peculiar. (This is about 2005 when there weren't too many politicised Islamic niqab-wearing women, but enough. She could have put on a burkha and no one would have stared, as she said they did). Eventually the burning sensititivy progressed to her entire body and she lived in blacked-out rooms wearing dark clothes and only going out at dusk and before dawn.
Confined to her house, she cancelled medical appointments, her wedding and visits to friends. She employed an assistant to sit in the next room on a computer, although why she couldn't have used a computer without the screen on or a screen in the next room herself with a text reader is not explained. She tries many treatments from conventional medications to the long-shots like acupuncture and the ridiculous like carrying a crystal. The disease does improve, but then again she relapses and it never entirely leaves her.
So she begins to write this book in the dark with her thumb holding her place. Like it was before technology, like it was the dark ages, well I suppose it was to her.
Up to this point the writing was overblown, word games were described in full with examples, there was never an adjective when two would do. Or an adjective plus a simile and a couple of adverbs. Creative-writing at it's very finest... at least it appeals to blurb writers and some reviewers who almost unanimously praise its 'lyrical prose. To me however, I could live without the 'setting sun sinks luxuriously beneath the foamy pink clouds, its work complete'. That's just padding. Padding because there really isn't much of a story to tell.
I was sorry for the woman. But I didn't like her. I understand her self-pitying attitude, the arrogance not so much. I didn't understand her desire to live as normally as she could without making adapations other than it being dark. She had a light meter, like a camera, which measured her disease as it waxed and waned, at what stage the light would be dim enough for her to go out and garden and when she would need to live in full blackout. If there are alternatives why wouldn't you try them?
She knew that her majority problem with light lay at the blue end of the spectrum (UV light), so I thought she would try red light (entirely non-UV), as in photographic dark rooms, but no. She is ok for a short while with the kind of street lights that use a sodium-vapour technology which produce light from the yellow end of the spectrum. So why not yellow bug-lights? What about moving to the north of Scotland for the winter - there are very few hours of daylight there and no what you might call bright sunlight at all. But nothing. I don't understand this mindset of soldiering through, not exploring all avenues that might lead to a better quality of life, and then complaining about it.
She does get married, late afternoon in a church lit with candles and then a reception in a marquee in the garden of their house. I don't know how it was lit! Here she is talking of how her husband brings her things.
"Roses and apples make up my memories. the roses were cut for me by Pete and glowed darkly in the curtained living room scenting the shadowy air. I would lift the vases to my face and press my nose to the velvety depths and breathe and breathe as if each flower were the mouth of a pipe connecting me to the world. The apples piled up in boxes on the kitchen floor. Enormous, shining warm from the sun, astonishgly perfect, endless. I would go into the kitchen just to gaze. They seemed an unasked for slightly inconvenient miracle performed on the apple tree by a passing angel in randomly benevolent mood unaware of the girl inside the house who would have liked a miracle for herself."
The book was hard for me to read with all the prose described by some as 'lyrical' and 'beautiful'. Maybe I lack a poetic gene? Maybe I read too much non-fiction which tends to stick to the point? To me this is self-indulgent writing that lacks the elucidating flash of inspiration that poetry can have and just fills up space.
It's a 2-star book. Writing about clothing, curtains and cures that didn't work and padding it out with great gobs of flowery prose didn't do it for me. But then 3 stars because although I didn't like her, I do feel great sympathy for the author who really hasn't got much of a life at all. I hope she gets better. I hope her writing does too.
_____
As a conclusion, having thought it over, I do wonder why there was much technology not explored by the author. Why was she so determined to make as few adaptions as possible, other than living in the dark? Why was she so vehemently opposed to the doctors' suggestions that this might be psychosomatic? In other words, did she protest too much?
June 18, 2015
This is one of the most beautifully written and yet harrowing memoirs I've ever read.
Anna suffers from a rare skin condition that makes her severely sensitive to light. It started out that she couldn't tolerate her glowing computer screen at work — she said it felt like someone was holding a blowtorch in front of her face.
Then the sensitivity spread to the rest of her body, and even when she was fully clothed, the light waves would irritate her skin.
So Anna (a pen name) was forced to become a Girl in the Dark. She blacked out a room in her home, not allowing any light in at all. If she stayed in darkness most of the day, her skin built up some resistance and she could tolerate low levels of light for a little while in the evening.
Doctors didn't know what to do and scant research was available on her condition. Anna tried dozens of remedies with little success. Sometimes she has a remission and can go outside after sunset, but never for very long. Other times she feels like she is burning up and she has to scurry to a blackened room.
But Anna still has joy in her life. She has a helpful and loving husband, and she takes delight in listening to audiobooks during her hours in the dark. Anna also started a new career as a private piano instructor, so she could work at home and control the lighting.
In the author's note, Anna joked that her story might not seem very engaging, given that this is her basic timeline:
But Anna made her story interesting by writing of her gradual intolerance to light, and her struggle to find information or doctors who could help. She and her husband also figured out ways to make brief excursions after dusk, rigging up a black-out curtain in the backseat of the car. The book is essentially a survival story, seeing how one woman adapted to an extreme change in lifestyle.
While reading this book, I frequently paused and considered how horrible it would be to feel so trapped by one's body. It made me grateful for the ability to move around in daylight, which I had always taken for granted. Anna's story was so thought-provoking and affecting that one evening I was reading it just before bed, and later that night I dreamt that my face was burned and fiery. I woke up in a panic, then was relieved to remember that I didn't suffer from Anna's condition. Since reading this, I've been taking more time to appreciate the sunshine and being able to walk outdoors. It gives you a new perspective on your daily life.
I am so impressed by Anna's resilience, and I am glad she found a way to share her story. I highly recommend this memoir.
Favorite Quotes
"My ears become my conduit to the world. In the darkness I listen — to thrillers, to detective novels, to romances; to family sagas, potboilers and historical novels; to ghost stories and classic fiction and chick lit; to bonkbusters and history books. I listen to good books and bad books, great books and terrible books; I do not discriminate. Steadily, hour after hour, in the darkness I consume them all."
"When I finish a book, I find I cannot start another one immediately. Each book needs time to settle in my mind, to be digested like a meal of many courses. It seems disrespectful to the characters to move on too quickly — after all, I have spent hours in their company, learnt their histories, looked on at significant moments of their lives. I still have nagging questions echoing in my mind: surely someone would have noticed the substitution of the bodies? Why in American crime fiction do people eat so much pizza?"
"Animals in zoos and prisoners sleep many hours a day. Like them I have become a devotee, a voluptuary of sleep, a connoisseur of its intense, uncharted pleasures. Sleep slips the chains of this life, snaps the intimate fetters of my skin, sets me free to travel the wild landscapes of the ungoverned mind. Each night I enter by the same door, yet find behind it something new. I plunge my hand into the lucky dip of dreams; sometimes I find sweets, and sometimes scorpions, but always, for a few hours, deliverance."
Anna suffers from a rare skin condition that makes her severely sensitive to light. It started out that she couldn't tolerate her glowing computer screen at work — she said it felt like someone was holding a blowtorch in front of her face.
Then the sensitivity spread to the rest of her body, and even when she was fully clothed, the light waves would irritate her skin.
So Anna (a pen name) was forced to become a Girl in the Dark. She blacked out a room in her home, not allowing any light in at all. If she stayed in darkness most of the day, her skin built up some resistance and she could tolerate low levels of light for a little while in the evening.
I know I do not have much time. Immediately I leave my blacked-out room, a clock is ticking; my skin begins its twisted dialogue with light. At first the exchange takes place in softest whispers, then more insistent mutterings. "Ignore it!" I want to scream. "You don't have to respond, don't get involved." But my skin soon chatters loudly, an argument is building. The situation is becoming heated; it is prudent to separate the protagonists. There are no blisters and no blotches -- I am free of visible signs of conflict. But agonisingly, with ever-increasing ferocity, over the whole covering of my body, I burn with invisible fire. I take my skin back to my lair. In the darkness, it regains its equilibrium.
Doctors didn't know what to do and scant research was available on her condition. Anna tried dozens of remedies with little success. Sometimes she has a remission and can go outside after sunset, but never for very long. Other times she feels like she is burning up and she has to scurry to a blackened room.
But Anna still has joy in her life. She has a helpful and loving husband, and she takes delight in listening to audiobooks during her hours in the dark. Anna also started a new career as a private piano instructor, so she could work at home and control the lighting.
In the author's note, Anna joked that her story might not seem very engaging, given that this is her basic timeline:
Monday: stayed in dark
Tuesday: stayed in dark
Wednesday: stayed in dark
Even I, a novice, realized that as literature it lacked a certain vim.
But Anna made her story interesting by writing of her gradual intolerance to light, and her struggle to find information or doctors who could help. She and her husband also figured out ways to make brief excursions after dusk, rigging up a black-out curtain in the backseat of the car. The book is essentially a survival story, seeing how one woman adapted to an extreme change in lifestyle.
While reading this book, I frequently paused and considered how horrible it would be to feel so trapped by one's body. It made me grateful for the ability to move around in daylight, which I had always taken for granted. Anna's story was so thought-provoking and affecting that one evening I was reading it just before bed, and later that night I dreamt that my face was burned and fiery. I woke up in a panic, then was relieved to remember that I didn't suffer from Anna's condition. Since reading this, I've been taking more time to appreciate the sunshine and being able to walk outdoors. It gives you a new perspective on your daily life.
I am so impressed by Anna's resilience, and I am glad she found a way to share her story. I highly recommend this memoir.
Favorite Quotes
"My ears become my conduit to the world. In the darkness I listen — to thrillers, to detective novels, to romances; to family sagas, potboilers and historical novels; to ghost stories and classic fiction and chick lit; to bonkbusters and history books. I listen to good books and bad books, great books and terrible books; I do not discriminate. Steadily, hour after hour, in the darkness I consume them all."
"When I finish a book, I find I cannot start another one immediately. Each book needs time to settle in my mind, to be digested like a meal of many courses. It seems disrespectful to the characters to move on too quickly — after all, I have spent hours in their company, learnt their histories, looked on at significant moments of their lives. I still have nagging questions echoing in my mind: surely someone would have noticed the substitution of the bodies? Why in American crime fiction do people eat so much pizza?"
"Animals in zoos and prisoners sleep many hours a day. Like them I have become a devotee, a voluptuary of sleep, a connoisseur of its intense, uncharted pleasures. Sleep slips the chains of this life, snaps the intimate fetters of my skin, sets me free to travel the wild landscapes of the ungoverned mind. Each night I enter by the same door, yet find behind it something new. I plunge my hand into the lucky dip of dreams; sometimes I find sweets, and sometimes scorpions, but always, for a few hours, deliverance."
May 18, 2020
I am a catastrophic thinker. I blame the media. Not always but more often than not, I have given serious consideration to whether heartburn might actually be a heart attack, calf pain a DVT. Knowing this about myself, I tend to avoid books like Brain on Fire or The Diving Bell and the Butterfly because, well, I'm afraid to read them. How I'm always picking up books without realizing their content is beyond me but in the case of Girl In The Dark, I'm so glad I made this impulse grab at the library yesterday because this book spoke to me in many ways.
Written in lyrically beautiful prose, this is both tragedy and love story. The writing is painfully honest, at times funny, always precise and lovely and real. The reader gets a true sense of how a sudden, chronic, debilitating illness can level a person at the knees and steal all vestiges of their previous life. One point I thought was very well-made was that in instances like these, all bets are off...those you expect to be there may not be able to handle the circumstances and none of us know what we would do in another person's circumstances.
The fact that this woman wrote this book literally in the dark is not lost on me either. Candid about her moments of boredom and despair, she discusses it all without self-pity. I could not hold back the tears when I saw her graph in the Author's Note demonstrating how much of each year she spent isolated. Clearly already in possession of tremendous strength, character and a great love in her life, I wish her simply happiness and peace and I hope one day she can come back into the light. 5 stars.
Written in lyrically beautiful prose, this is both tragedy and love story. The writing is painfully honest, at times funny, always precise and lovely and real. The reader gets a true sense of how a sudden, chronic, debilitating illness can level a person at the knees and steal all vestiges of their previous life. One point I thought was very well-made was that in instances like these, all bets are off...those you expect to be there may not be able to handle the circumstances and none of us know what we would do in another person's circumstances.
The fact that this woman wrote this book literally in the dark is not lost on me either. Candid about her moments of boredom and despair, she discusses it all without self-pity. I could not hold back the tears when I saw her graph in the Author's Note demonstrating how much of each year she spent isolated. Clearly already in possession of tremendous strength, character and a great love in her life, I wish her simply happiness and peace and I hope one day she can come back into the light. 5 stars.
April 16, 2015
It is hard to imagine the true implications of living a life in the dark. Anna Lyndsey (pen name) allows us glimpse of her black box life in this beautifully poetic memoir. If it is often emotionally devastating for the reader, envision that we get to go back to our world of light.
It begins slowly with light sensitivity, burning facial skin when sitting in front of a computer screen.
”Burns? Burns like the worst kind of sunburn. Burns like someone is holding a flame-thrower to my head.
The sensitivity to light progresses and Lyndsey’s life is changed forever. Had she written Girl in the Dark in diary format, it may have kept my attention. Instead, she chose to present a group of essays in no particular order of occurrence making her story compelling.
Lyndsey explains:
”Even I, as a novice, realized that as literature it lacked a certain vim. Clearly I had to abandon the chronological approach…”
Opening the book we are invited in with this dedication ”For my visitors” and are immediately plunged into Lyndsey’s quest to darken the light that is seeping in.
It is extraordinarily difficult to black out a room.”
This whole first chapter takes us through the room blackening process. Blackout roller blinds, foil taped over the windowpanes, layer upon layer but the light creeps in. Eventually through trial and error she creates a satisfactory blackness. Her days are spent in vast amounts of time alone, listening to audio books, knitting even, and in the end discarding music as a pastime as it depresses her. She outlines recurring dreams and explains the rules of the games she plays when the blackness bores her or sleep won’t come. She shares willingly her relationship with Pete, a love story that stacks up to the best. There are remissions but they never last. She does not seek sympathy for her fate though desired a different place to leave us.
My book is marked with so many colorful sticky notes, red, green, purple. If I were to quote each passage that touched me I’d be guilty of infringement.
I will leave you with one more thought. In one piece titled Parallels Lyndsey cites her need to read books about people in extreme situations. She offers us four books that have elements in common with her situation, though not the same. Any of these would be worth reading.
”I covet tales of human beings in extremis; want to know how they felt, what they did, how they bore it.”
This, in the end, may be why I found my way to Girl in the Dark. It is an exquisitely written testament to the human spirit. I have learned something invaluable in its reading. My hope is that you will also.
It begins slowly with light sensitivity, burning facial skin when sitting in front of a computer screen.
”Burns? Burns like the worst kind of sunburn. Burns like someone is holding a flame-thrower to my head.
The sensitivity to light progresses and Lyndsey’s life is changed forever. Had she written Girl in the Dark in diary format, it may have kept my attention. Instead, she chose to present a group of essays in no particular order of occurrence making her story compelling.
Lyndsey explains:
”Even I, as a novice, realized that as literature it lacked a certain vim. Clearly I had to abandon the chronological approach…”
Opening the book we are invited in with this dedication ”For my visitors” and are immediately plunged into Lyndsey’s quest to darken the light that is seeping in.
It is extraordinarily difficult to black out a room.”
This whole first chapter takes us through the room blackening process. Blackout roller blinds, foil taped over the windowpanes, layer upon layer but the light creeps in. Eventually through trial and error she creates a satisfactory blackness. Her days are spent in vast amounts of time alone, listening to audio books, knitting even, and in the end discarding music as a pastime as it depresses her. She outlines recurring dreams and explains the rules of the games she plays when the blackness bores her or sleep won’t come. She shares willingly her relationship with Pete, a love story that stacks up to the best. There are remissions but they never last. She does not seek sympathy for her fate though desired a different place to leave us.
My book is marked with so many colorful sticky notes, red, green, purple. If I were to quote each passage that touched me I’d be guilty of infringement.
I will leave you with one more thought. In one piece titled Parallels Lyndsey cites her need to read books about people in extreme situations. She offers us four books that have elements in common with her situation, though not the same. Any of these would be worth reading.
”I covet tales of human beings in extremis; want to know how they felt, what they did, how they bore it.”
This, in the end, may be why I found my way to Girl in the Dark. It is an exquisitely written testament to the human spirit. I have learned something invaluable in its reading. My hope is that you will also.
November 13, 2015
Despite a pair of solid 4-star reviews from trusted GR friends, I fully expected to hate this. Any time a memoirist opts to tell her story pseudonymously, my inner skeptic waves a semaphore: "Bullshit alert!" Like, who's she hiding from? Can we trust anything she has to impart?
I'm glad I got past my initial skepticism, as "Anna Lyndsey"'s Girl in the Dark certainly should not be dismissed. Her account of her descent into darkness (literally), thanks to a chronic, as yet uncurable condition that causes her skin to feel like it's being "blasted with a blowtorch" with the presence of most any light sources (from the sun to her laptop display) , is quite a compelling read. It reminds me a great deal of Todd Haynes' 1995 movie "Safe", where Julianne Moore's character is stricken ill by unknown, unseen environmental factors and becomes unable to leave her house.
Ms. Lyndsey's plight, related in short, loosely connected, somewhat chronological bursts, traces her life from the early onset of the illness (as she tries to navigate her stressful job shaping public policy as a civil servant in England), to trying to maintain a blossoming love relationship with her photographer boyfriend Pete as her condition spirals out of control, to hunkering down in their oftentimes pitch-blackened house with little more than audio books to keep her company, to swathing herself head-to-toe with special clothing and transported (in a tent-like device in the back of her boyfriend's car) to many ineffective clinic appointments and alternate therapies (from reiki massage to chelation).
This could easily been a somber, one-note mopefest, but the short, surprisingly well-written chapters (with random insights on how she staves off insanity and depression) made this consistently interesting and relatable. I'm still not quite sure why she chose a pen name to tell her story, but I'm glad my fears of a lack of veracity were unfounded.
I'm glad I got past my initial skepticism, as "Anna Lyndsey"'s Girl in the Dark certainly should not be dismissed. Her account of her descent into darkness (literally), thanks to a chronic, as yet uncurable condition that causes her skin to feel like it's being "blasted with a blowtorch" with the presence of most any light sources (from the sun to her laptop display) , is quite a compelling read. It reminds me a great deal of Todd Haynes' 1995 movie "Safe", where Julianne Moore's character is stricken ill by unknown, unseen environmental factors and becomes unable to leave her house.
Ms. Lyndsey's plight, related in short, loosely connected, somewhat chronological bursts, traces her life from the early onset of the illness (as she tries to navigate her stressful job shaping public policy as a civil servant in England), to trying to maintain a blossoming love relationship with her photographer boyfriend Pete as her condition spirals out of control, to hunkering down in their oftentimes pitch-blackened house with little more than audio books to keep her company, to swathing herself head-to-toe with special clothing and transported (in a tent-like device in the back of her boyfriend's car) to many ineffective clinic appointments and alternate therapies (from reiki massage to chelation).
This could easily been a somber, one-note mopefest, but the short, surprisingly well-written chapters (with random insights on how she staves off insanity and depression) made this consistently interesting and relatable. I'm still not quite sure why she chose a pen name to tell her story, but I'm glad my fears of a lack of veracity were unfounded.
January 3, 2015
*NetGalley book review*
I can not imagine what it must be like to lose your sight. Of course you say, close your eyes silly. But its more than that. To lose it little by little and have light sensitivity problems added on to it... I would make my whole house a dark room. I was so captivated by this story only a few short pages into it and it was an emotional ride never to forget. This is one of the best medically themed memoirs I have read. You should also!!
I can not imagine what it must be like to lose your sight. Of course you say, close your eyes silly. But its more than that. To lose it little by little and have light sensitivity problems added on to it... I would make my whole house a dark room. I was so captivated by this story only a few short pages into it and it was an emotional ride never to forget. This is one of the best medically themed memoirs I have read. You should also!!
March 6, 2019
What a pity party! So, she has light sensitivity and has to be in the dark and can only go out at night. She complains about it through the whole book. I have CP and sit in a wheelchair and have to use a communication device with two head switches to talk. I have people help me with all of my care and yet I don’t go around being all negative about my life. It’s stories like this that make it hard for people like me to prove that our lives matter and that we shouldn’t all be euthanized.
March 3, 2015
This might be the most astonishing, the most beautifully written memoir that I have ever read.
Anna Lyndsey was a civil servant when light began to affect her. What began as irritation when she worked in front of a computer screen grew into a condition where she had to live in darkness, in a room completely and utterly blacked out, wrapped in dense, heavy clothing, because even the faintest hint of light - natural or artificial - would cause her agonising pain.
As her sensitivity increased she tried different things - an indoor job as a piano teacher, any number of therapies - but the progress of her condition was inexorable.
And so you should take the title of this book very, very literally.
It really is the story of a girl who lived in the dark.
She skitters backwards and forwards thorough time because, writing about different aspects of her life in the dark, catching different moods and emotions. It's very effective, and, though sometimes it's dislocating, maybe that's the point.
That means that this is a veritable treasure chest of a book:
There is gorgeous literary writing about what it is like to live without light, and about how that changed her perception of so many things.
There are firm words for medics and local governments, caught up in bureaucracy, and lacking the flexibility that is so very necessary for dealing with extraordinary circumstances. The relationships, the support that they might have given came instead from the few others who were loving with similar conditions.
And there are quietly appreciative words for her family and for friends who put themselves out to do whatever they can for her.
Above all this is one woman's testament; it catches her memories, her hopes, her dreams, her fears; it catches the full range of her emotions, from the humour that she finds in many things to the suicidal impulses that she struggles to keep at bay.
Her words feel honest, and her life - extraordinary though it is - feels real. She is wonderfully eloquent, and her story speaks profoundly about the human condition.
Though there would be periods of remission - periods where she could, after her husband had prepared the house, venture downstairs; periods when she could even step outside the house at dusk - the dark would always pull her back. She would find no answers to questions about what caused her condition or to questions about what the future might hold.
That was frightening, but it also allowed a little glimmer of hope into a blacked-out world.
This is a wonderfully readable book; I found it hard to put down, and I know that it will stay in my head and in my heart.
Anna Lyndsey was a civil servant when light began to affect her. What began as irritation when she worked in front of a computer screen grew into a condition where she had to live in darkness, in a room completely and utterly blacked out, wrapped in dense, heavy clothing, because even the faintest hint of light - natural or artificial - would cause her agonising pain.
As her sensitivity increased she tried different things - an indoor job as a piano teacher, any number of therapies - but the progress of her condition was inexorable.
And so you should take the title of this book very, very literally.
It really is the story of a girl who lived in the dark.
She skitters backwards and forwards thorough time because, writing about different aspects of her life in the dark, catching different moods and emotions. It's very effective, and, though sometimes it's dislocating, maybe that's the point.
That means that this is a veritable treasure chest of a book:
There is gorgeous literary writing about what it is like to live without light, and about how that changed her perception of so many things.
"I sit in the dark and listen to the storm. I hear the bitter clatter of rain against my walls, and the low book of the wind, a strange unsettling frequency that makes the bones in my skull vibrate.
My ears exult in the glorious accumulating noise, my blood foams with the energy of the storm. The world outside is trying to reach me, roused from its usual indifference. It drags its claws along the bars of my cage. It puts its mouth to my wall, and roars.
My body has learned to sit quietly in my room. It has learned not to scream or sob or writhe. But my spirit swirls lie the wind, surges lie the rain. The wildness outside calls to the wildness within.
'I hear you,' I cry out in my mind. 'I'm here, keep going, don't stop'
There are firm words for medics and local governments, caught up in bureaucracy, and lacking the flexibility that is so very necessary for dealing with extraordinary circumstances. The relationships, the support that they might have given came instead from the few others who were loving with similar conditions.
And there are quietly appreciative words for her family and for friends who put themselves out to do whatever they can for her.
"People make me tidy up my psyche, as one might order the magazines on the coffee table before a visitor arrives, and afterwards, for a while, they will stay that way, before entropy reasserts its hold.
People remind me of my true shape, the particular bent of my mind, the curve of my wit; that I have substance, though I move wraithlike among shadows, that the years before the darkness laid down rich sediment which has not been washed away."
Above all this is one woman's testament; it catches her memories, her hopes, her dreams, her fears; it catches the full range of her emotions, from the humour that she finds in many things to the suicidal impulses that she struggles to keep at bay.
Her words feel honest, and her life - extraordinary though it is - feels real. She is wonderfully eloquent, and her story speaks profoundly about the human condition.
Though there would be periods of remission - periods where she could, after her husband had prepared the house, venture downstairs; periods when she could even step outside the house at dusk - the dark would always pull her back. She would find no answers to questions about what caused her condition or to questions about what the future might hold.
That was frightening, but it also allowed a little glimmer of hope into a blacked-out world.
This is a wonderfully readable book; I found it hard to put down, and I know that it will stay in my head and in my heart.
July 23, 2015
While not what I would term an "easy" or "light" read, Girl in the Dark was a quick read, and one of the few books (especially recently) I've given a 5 star rating. This was a book that grabbed me from the beginning, and the author made me feel all the emotions she was experiencing throughout the book - the true sign of a good memoir in my opinion. Anna Lyndsey takes you on a roller coaster ride from the deepest depths of despair due to living in COMPLETE and utter darkness and being confined to her home for years, to sublime joy at the slightest improvement, such as the ability to venture out after dark or simply enjoy a tiny crack of sunlight through a curtain.
In 2005, while working for the Department of Work and Pensions in London, Anna began to notice a burning and tingling sensation in her face when she sat in front of a computer. She was eventually diagnosed with an extremely rare form of light sensitivity known as photosensitive seborrhoeic dermatitis. Her skin then began to turn red and feel as if it was burning when she was around minimal light of any kind, especially fluorescent light or computer screens. She soon has to resign from her job and asks her then boyfriend, Pete, if she could move to his house outside London due to not knowing what else to do and being unable to cope on her own. He was agreeable, and so they began a life together, not knowing what effect her condition would actually have on their future.
Her condition continued to worsen and reached the point that she had to place film AND heavy curtains over the windows in her bedroom, as well as wear special clothing covering almost every inch of skin at all times. She cannot even venture into other rooms of her home for longer than a few minutes, and sometimes, if experiencing a particularly terrible flare-up, not at all. She described it to a physician as "It is like someone is holding a blowtorch in front of my face."
I honestly can't even imagine having to live life totally in the dark, and being unable to leave the house, as she has for years on end, and highly admire her for making the best of such a bleak situation. This book will definitely make you grateful for all the little things in life!
In 2005, while working for the Department of Work and Pensions in London, Anna began to notice a burning and tingling sensation in her face when she sat in front of a computer. She was eventually diagnosed with an extremely rare form of light sensitivity known as photosensitive seborrhoeic dermatitis. Her skin then began to turn red and feel as if it was burning when she was around minimal light of any kind, especially fluorescent light or computer screens. She soon has to resign from her job and asks her then boyfriend, Pete, if she could move to his house outside London due to not knowing what else to do and being unable to cope on her own. He was agreeable, and so they began a life together, not knowing what effect her condition would actually have on their future.
Her condition continued to worsen and reached the point that she had to place film AND heavy curtains over the windows in her bedroom, as well as wear special clothing covering almost every inch of skin at all times. She cannot even venture into other rooms of her home for longer than a few minutes, and sometimes, if experiencing a particularly terrible flare-up, not at all. She described it to a physician as "It is like someone is holding a blowtorch in front of my face."
I honestly can't even imagine having to live life totally in the dark, and being unable to leave the house, as she has for years on end, and highly admire her for making the best of such a bleak situation. This book will definitely make you grateful for all the little things in life!
March 26, 2016
3 stars - It was good.
Beautiful writing about a horrific situation. The author is an inspiration to others, as someone that is capable of finding happiness in her brief, intermittent moments of freedom.
-------------------------------------------
Favorite Quote: Friendship plants itself as a small unobtrusive seed; over time, it grows thick roots that wrap around your heart. When a love affair ends, the tree is torn out quickly, the operation painful but clean. Friendship withers quietly, there is always hope of revival. Only after time has passed do you recognise that it is dead, and you are left, for years afterwards, pulling dry brown fibres from your chest.
First Sentence: It is extraordinarily difficult to black out a room.
Beautiful writing about a horrific situation. The author is an inspiration to others, as someone that is capable of finding happiness in her brief, intermittent moments of freedom.
-------------------------------------------
Favorite Quote: Friendship plants itself as a small unobtrusive seed; over time, it grows thick roots that wrap around your heart. When a love affair ends, the tree is torn out quickly, the operation painful but clean. Friendship withers quietly, there is always hope of revival. Only after time has passed do you recognise that it is dead, and you are left, for years afterwards, pulling dry brown fibres from your chest.
First Sentence: It is extraordinarily difficult to black out a room.
April 15, 2015
I'd give it a 2.5 but I can't justify the full 3 stars. Fascinating situation but... I wish that it had been told from other perspectives and not just hers because it was very isolated (which I suppose was the point, to share her limited existence) but was frustrating for me as a reader. I can appreciate the function of it in the book but I wouldn't categorize this as an enjoyable read. I would have found it much more interesting to hear from the people around her (like her poor husband) and get an expert medical opinion on what's going on with her.
Overall, it was hard to tell what was happening when; it was hard to understand why she couldn't get all bundled up during one of her semi-remission states and have her husband just drive her to see a specialist; why, since this is such a unique medical case, no legitimate specialists in England would travel to her home to see her... she made it sound like she hadn't even been properly assessed by the people who could actually help her. I would hope that's not actually the case in the ten years this has been happening but I don't recall that being addressed in the book. Sorry if it did and I missed that revelation. I would have felt more engaged with the story if it was interspersed with the story about a medical team trying their hardest to figure out what was happening and why and how to treat it instead of just her day to day in the blackout room but it's not that kind of book. Didn't hate it but it was a little too loosey goosey for my tastes. :)
Overall, it was hard to tell what was happening when; it was hard to understand why she couldn't get all bundled up during one of her semi-remission states and have her husband just drive her to see a specialist; why, since this is such a unique medical case, no legitimate specialists in England would travel to her home to see her... she made it sound like she hadn't even been properly assessed by the people who could actually help her. I would hope that's not actually the case in the ten years this has been happening but I don't recall that being addressed in the book. Sorry if it did and I missed that revelation. I would have felt more engaged with the story if it was interspersed with the story about a medical team trying their hardest to figure out what was happening and why and how to treat it instead of just her day to day in the blackout room but it's not that kind of book. Didn't hate it but it was a little too loosey goosey for my tastes. :)
January 6, 2015
I'm not normally one for memoirs, but this book is an exquisitely written, beautifully structured, heart-wrenching-yet-hopeful masterpiece. And the clichés are mine, as all of the author's descriptions are fresh and original.
The story is that of a woman who develops a painful reaction to all sources of light and is progressively confined to a blackened room in a darkened house. She shares her fears, her loss of freedom, and her dependence on others in a new life where even eating with a dim lamp on in the other room is an excruciating experience.
But the book is more than a literary ode to the confines of life without light. It is a manual for living in the dark, including games to play and audiobooks to listen to. It is a stark reminder of the confines of the medical profession. It is an indictment of bureaucracy when it comes to almost-unique cases. It is a love-letter to those of her friends and family that remain devoted despite the strain. And it is a collection of hopes and dreams coated in perseverance and empathy.
I got lost in the prose, in the way one does with good thrillers, and often found myself blinking up at the light, having been transported into a darkened hell.
I cannot recommend this book enough. Read it.
*I would like to thank the publisher for providing a copy of the proof in a giveaway for honest reviews
The story is that of a woman who develops a painful reaction to all sources of light and is progressively confined to a blackened room in a darkened house. She shares her fears, her loss of freedom, and her dependence on others in a new life where even eating with a dim lamp on in the other room is an excruciating experience.
But the book is more than a literary ode to the confines of life without light. It is a manual for living in the dark, including games to play and audiobooks to listen to. It is a stark reminder of the confines of the medical profession. It is an indictment of bureaucracy when it comes to almost-unique cases. It is a love-letter to those of her friends and family that remain devoted despite the strain. And it is a collection of hopes and dreams coated in perseverance and empathy.
I got lost in the prose, in the way one does with good thrillers, and often found myself blinking up at the light, having been transported into a darkened hell.
I cannot recommend this book enough. Read it.
*I would like to thank the publisher for providing a copy of the proof in a giveaway for honest reviews
February 22, 2015
This memoir of living with an illness I had never heard of, light sensitivity so extreme as to require living in complete darkness, was fascinating mostly in view of imagining what it must be like to live that way. I particularly enjoyed the mental word games she invents she to keep her mind occupied.
It didn't get a higher rating from me because the first person present tense was often distracting to me - it's a trend in recent years that I've grown to dislike. I also struggled sometimes to stay engaged through the lengthy, overly descriptive retellings of trees seen, flowers smelled, grass walked on. These descriptions would get two, three metaphors deep and I would feel like, "I get it. The tree was pretty. Let's move on with the story."
I would say it could stand to be edited down, but it's already a brief book. Interesting, but not earth shatteringly good. Only read if the premise really interests you.
It didn't get a higher rating from me because the first person present tense was often distracting to me - it's a trend in recent years that I've grown to dislike. I also struggled sometimes to stay engaged through the lengthy, overly descriptive retellings of trees seen, flowers smelled, grass walked on. These descriptions would get two, three metaphors deep and I would feel like, "I get it. The tree was pretty. Let's move on with the story."
I would say it could stand to be edited down, but it's already a brief book. Interesting, but not earth shatteringly good. Only read if the premise really interests you.
January 24, 2016
As everyone who's considered picking up this little book probably knows, "Anna Lyndsey" suffers from an extremely rare and as yet incurable ailment that renders her completely intolerant of both natural and artificial light, and thus largely confines her to a contemplative indoor life of darkness and solitude.
Lyndsey's bizarre infirmity is inherently interesting, and so a lesser writer than Lyndsey might have coasted by on that alone. So it's a testament to Lyndsey's talent that in the end, the facts of her illness, confounding as they are, remain less compelling overall than the creative writing and thinking they inspire in Lyndsey as she grapples with enforced seclusion and exclusion.
Particularly in the second half of the book, Lyndsey reveals herself as an observant chronicler of time and natural phenomena, like Annie Dillard or May Sarton. In addition, she's a bit of a scientist at heart, with an appreciation for the genetic crapshoot that engendered her illness and an equally heartfelt respect for the cycles of nature, which she's grateful to observe during rare, random moments when her symptoms subside. All these qualities often allow Lyndsey's book to transcend the "illness memoir" genre. When she's at her best, I often felt like I was reading some really great nature writing, and so it is to devotees of this genre that I might most recommend this book. Lyndsey has a wonderful ability to describe the ways in which her very unique symptoms have transformed her into a kind of different species that has evolved specific and quirky habits to ensure survival. She has a eye for the magical and macabre alike, and most importantly, retains a sense of humor whether she is describing how her lifestyle has now become more wombat than human or how she is habitually attacked by dogs who uniformly despise her enormous sunhats.
Lyndsey is also an elegant writer with a distinctive voice and style possibly influenced by her years and years and years spent listening to audiobooks all day long in the dark. She clearly displays an honed appreciation for the cadence and sounds of sentences and the way a story unfurls. She also evidences a love for words and literature, which she describes throughout the book, using examples such as esoteric memory games and literary role models, as critical to her salvation and sanity. In this way, the memoir works as a "book-lovers book" as well.
The structure of this book suits its style and content. Lyndsey tells her story in a series of episodic vignettes that reflect some of the ways in which her story is chronologically challenged, such as her discombobulated circadian rhythms (from living in darkness) and her unpredictable bouts of liberating remission alternating haphazardly with periods of devastating setbacks.
As the author herself points out, it's almost impossible to resist the temptation to turn all this odd, extreme photosensitivity and enforced confinement into some kind of metaphor for something else. I will say that Lyndsey is skillful enough an author that although her story is but a one-in-a-million case study, she achieves a sort of universality in its telling. She writes about her experience in a way that is relatable, edifying, and refreshing enough to inspire others who may be coping with another chronic health condition, a debilitating hidden disability such as clinical depression or social anxiety, or even just the rigors of life itself. As I read this book, I often felt thankful for the ability to engage intelligently and creatively with worthy themes and topics that are often left to fester on the trite, aphoristic pages of self-help books -- themes like gratitude, say, and perseverance.
Oh -- and lest I forget -- it's a love story, too, if that's your thing. And a touching and utterly real one at that. It's incredibly romantic in its normalcy, especially given the abnormality of the circumstances and settings in which this romantically normal love manages to flourish.
It's a brief, brisk read and one well worth the time, I think. Recommended.
Lyndsey's bizarre infirmity is inherently interesting, and so a lesser writer than Lyndsey might have coasted by on that alone. So it's a testament to Lyndsey's talent that in the end, the facts of her illness, confounding as they are, remain less compelling overall than the creative writing and thinking they inspire in Lyndsey as she grapples with enforced seclusion and exclusion.
Particularly in the second half of the book, Lyndsey reveals herself as an observant chronicler of time and natural phenomena, like Annie Dillard or May Sarton. In addition, she's a bit of a scientist at heart, with an appreciation for the genetic crapshoot that engendered her illness and an equally heartfelt respect for the cycles of nature, which she's grateful to observe during rare, random moments when her symptoms subside. All these qualities often allow Lyndsey's book to transcend the "illness memoir" genre. When she's at her best, I often felt like I was reading some really great nature writing, and so it is to devotees of this genre that I might most recommend this book. Lyndsey has a wonderful ability to describe the ways in which her very unique symptoms have transformed her into a kind of different species that has evolved specific and quirky habits to ensure survival. She has a eye for the magical and macabre alike, and most importantly, retains a sense of humor whether she is describing how her lifestyle has now become more wombat than human or how she is habitually attacked by dogs who uniformly despise her enormous sunhats.
Lyndsey is also an elegant writer with a distinctive voice and style possibly influenced by her years and years and years spent listening to audiobooks all day long in the dark. She clearly displays an honed appreciation for the cadence and sounds of sentences and the way a story unfurls. She also evidences a love for words and literature, which she describes throughout the book, using examples such as esoteric memory games and literary role models, as critical to her salvation and sanity. In this way, the memoir works as a "book-lovers book" as well.
The structure of this book suits its style and content. Lyndsey tells her story in a series of episodic vignettes that reflect some of the ways in which her story is chronologically challenged, such as her discombobulated circadian rhythms (from living in darkness) and her unpredictable bouts of liberating remission alternating haphazardly with periods of devastating setbacks.
As the author herself points out, it's almost impossible to resist the temptation to turn all this odd, extreme photosensitivity and enforced confinement into some kind of metaphor for something else. I will say that Lyndsey is skillful enough an author that although her story is but a one-in-a-million case study, she achieves a sort of universality in its telling. She writes about her experience in a way that is relatable, edifying, and refreshing enough to inspire others who may be coping with another chronic health condition, a debilitating hidden disability such as clinical depression or social anxiety, or even just the rigors of life itself. As I read this book, I often felt thankful for the ability to engage intelligently and creatively with worthy themes and topics that are often left to fester on the trite, aphoristic pages of self-help books -- themes like gratitude, say, and perseverance.
Oh -- and lest I forget -- it's a love story, too, if that's your thing. And a touching and utterly real one at that. It's incredibly romantic in its normalcy, especially given the abnormality of the circumstances and settings in which this romantically normal love manages to flourish.
It's a brief, brisk read and one well worth the time, I think. Recommended.
August 12, 2018
CURRENT FUNCTIONAL CAPACITY:
This lady's light sensitivity is so severe and she is so sensitive to it (as is the case with a small group of patients who we see with the same condition) that she is severely incapacitated because of the extent to which she has to avoid all the various sources of light, which of course are ubiquitous in any normal environment... In fact, during 2006 things have been so bad that for a prolonged period of many months now she has been confined to a darkened room at home and is not able to tolerate any other situation because of her skin problem...
Anna Lyndsey (a pseudonym) is a thirty-something woman (who consistently and irritatingly refers to herself as a girl) with such an extreme and undiscriminating sensitivity to light that she becomes functionally disabled. Lyndsey's story begins when she is still a government employee who notices an increasingly painful sensation on her face after prolonged periods at her computer. She decides that she is sensitive to the light from the computer screen, but this bizarre sensitivity escalates until she is sensitive to all forms of light, including sunlight.
Scientifically, this makes zero sense. The light emitted by a computer screen and even light bulbs is vastly different from sunlight. Lyndsey consults, I believe, exactly two doctors about her condition, but stops going once they suggest that her condition might be psychological. She doesn't make this connection in the book, of course, but the reader can't help but notice the timeline of when she stopped keeping her appointments. She refuses to even consider that her condition is psychosomatic, but although she shuns medical help, she tries acupuncture, dietary changes, mysterious vitamin regimes, faith healing, crystal healing, and energy healing, to same a few.
This memoir is very well written, but I was unable to sympathize with Lyndsey. She glosses over how incredibly controversial her "illness" is and would rather construct elaborate black-out forts in her poor fiance's house than consult a medical professional. She would rather normalize her bizarre lifestyle than become a functioning member of society.
Shelving as "Mental Illness" rather than as "Medical."
This lady's light sensitivity is so severe and she is so sensitive to it (as is the case with a small group of patients who we see with the same condition) that she is severely incapacitated because of the extent to which she has to avoid all the various sources of light, which of course are ubiquitous in any normal environment... In fact, during 2006 things have been so bad that for a prolonged period of many months now she has been confined to a darkened room at home and is not able to tolerate any other situation because of her skin problem...
Anna Lyndsey (a pseudonym) is a thirty-something woman (who consistently and irritatingly refers to herself as a girl) with such an extreme and undiscriminating sensitivity to light that she becomes functionally disabled. Lyndsey's story begins when she is still a government employee who notices an increasingly painful sensation on her face after prolonged periods at her computer. She decides that she is sensitive to the light from the computer screen, but this bizarre sensitivity escalates until she is sensitive to all forms of light, including sunlight.
Scientifically, this makes zero sense. The light emitted by a computer screen and even light bulbs is vastly different from sunlight. Lyndsey consults, I believe, exactly two doctors about her condition, but stops going once they suggest that her condition might be psychological. She doesn't make this connection in the book, of course, but the reader can't help but notice the timeline of when she stopped keeping her appointments. She refuses to even consider that her condition is psychosomatic, but although she shuns medical help, she tries acupuncture, dietary changes, mysterious vitamin regimes, faith healing, crystal healing, and energy healing, to same a few.
This memoir is very well written, but I was unable to sympathize with Lyndsey. She glosses over how incredibly controversial her "illness" is and would rather construct elaborate black-out forts in her poor fiance's house than consult a medical professional. She would rather normalize her bizarre lifestyle than become a functioning member of society.
Shelving as "Mental Illness" rather than as "Medical."
April 20, 2020
Il buio fa paura, inquieta e disorienta ma per la giovane Anna diventa la sua salvezza, la sua stessa vita. Anna è una ragazza che ama il cielo azzurro, il mare, le stelle che illuminano la notte. Ma un giorno tutto cambia. Anna vive a Londra, ha un ragazzo che ama, un lavoro che la soddisfa. Crede in un futuro da costruire tra sogni e speranze. Mentre sta lavorando al computer, la sua faccia inizia a bruciarle procurandole un intenso dolore, e così la sua pelle non sopporta più il contatto con un solo raggio di luce. Il medico che la visita fa una diagnosi terribile: dermatite seborroica fotosensibile. La malattia è talmente rara che non esiste una cura. Per lenire il dolore Anna dovrà vivere completamente al buio, isolata nella sua stanza. Inizialmente la ragazza si sente persa, crollano le sue certezze, le paure si presentano in forma di pensieri ed emozioni devastanti. Ma proprio la solitudine e l’infelicità diventeranno le ceneri da cui rinascerà la vita di Anna. La porta si chiuderà sull’esistenza di Anna che non verrà sconfitta dal dolore perché accanto a lei c’è l’amore profondo e devoto di un uomo che nulla teme. Nel buio la ragazza trascorre le sue giornate trovando conforto nelle parole dei libri che ascolta e che le permettono di vivere avventure sempre nuove. Anche la musica ha un ruolo importante in questa apparente condanna. La mente invece si impegna in giochi al buio come il quadrato di parole, lo scriba, alfabeto di nomi. Nel buio Anna combatte la sua guerra con piccole vittorie e grandi sconfitte. Pillole, lozioni antimicotiche, creme steroidee sono tentativi che si susseguono con minimi risultati. La vita diventa una corsa sulle montagne russe: periodi più quieti si alternano a cupe ricadute in cui la disperazione si risveglia. Il finale vi coglierà impreparati e lascio a voi il brivido della scoperta.
“E’ proprio in fondo all’oscurità che si nasconde la luce più vera.”
“E’ proprio in fondo all’oscurità che si nasconde la luce più vera.”
September 22, 2015
I loved this book. If you, anonymous person reading this review, have a chronic illness, a disability or any type of debilitating medical issue, please do yourself a HUGE favor and read this book. Ms. Lyndsey is so articulate, she puts every feeling you ever experienced as a result of your issue into the perfect words. You don't have to suffer from light sensitivity, as she does, to feel this way. Trust me.
Exceptional book.
Exceptional book.
March 10, 2015
3.5 stars. If you're one of those readers that likes a memoir to follow some chronological order, then this isn't for you. She doesn't start at a conventional beginning that discusses her childhood and progresses to her disability. Instead, this reads more like a novel that jumps to various points in her life. What you find out about her life before she became shut-in is told as it becomes relevant to the scenes she discusses. Longer review later.
September 6, 2020
im conflicted because there were bits that i enjoyed and learned from but overall.. nope
June 25, 2018
I've always been fascinated with unfortunate conditions of extreme photosensitivity. Those with the condition vary in their level of reactions and to different wavelengths of light, but some cannot even venture outside during the day and must blackout-curtain and tinfoil themselves in blackened rooms. I'd always thought that these unfortunate souls were typically born with their symptoms, but Lyndsey teaches us that hers came on nine years ago, as an adult working in an office.
At first, it was just on her face, and only with the light from her computer screen. Lyndsey tried to get by for some time but eventually had to take what she expected to be a short hiatus from work. She never returned. The treatment prescribed to her resolved the burning on her face for a while... only to seemingly transfer it to the skin on the rest of her body, and to include all sources of light, from electronics to florescent lights to the sun.
This narrative feels somewhat like a cobbled together narrative of Lyndsey's experience. There is a chronological flow, but it is interrupted by her sharing the things she does to pass her hours in the dark, including audiobooks and mental games. There's some level of disjointedness but not so much that I lost the thread, and there's a hell of a lot of emotion here.
And therein lies some of my hesitation. Absolutely, she's dealing with a medical condition that I have been fortunate not to. These things must be noted and discounted against me when one considers my criticisms. But, unfortunately, I do have a few.
Though up until this point, the stories I've read about victims of this condition, they've always shared that their sensitivity to light results in burns and blisters to the skin. Lyndsey repeatedly shares in her narrative that she does not have a physical reaction of her skin. It is all pain in the form of a burning sensation but this never seems to manifest in physical damage to her skin. I am sorely prejudiced against people who cry, "psychological problem!"when encountering a medical condition they don't understand, particularly when it comes to women. I've had it happen to me. Lyndsey has had this happen to her, and she articulates her frustration with this very well. But given the other evidence I've seen about this condition, by the end of the book I was sort of slightly suspicious myself. I dislike my response to this but I couldn't help it. Two things here: if Lyndsey IS actually experiencing some psychological disorder involvement in her illness, despite her protests, that doesn't make her illness any less serious, and it doesn't invalidate her symptoms. I can't help but wonder if such a consideration could actually be helpful in diagnosis and resolution. But I also understand that when a person experiences an illness in a painful physical form, it's very easy to feel disregarded when there's even the slightest hint that a psychological condition may at be at least partially in play. Second, I easily acknowledge that there may very well be wholly physical photosensitivity disorders not causing outward physical manifestations that we have yet to understand. Also, I clearly haven't exhausted all scientific or medical literature to know the potential possibility of cases such as Lyndsey describes.
My other hesitation throughout this memoir, and potentially connected to the one above, is some of Lyndsey's descriptions of her illness and response to it. Much if it seems quite... hyperbolic to me. YES, she has a painful response to light. YES, she is forced to remain in a darkened room when the sun is out (and sometimes, during the lowest times, even in the evenings). But... here:
In response to realizing that her life will not be the same: "I crumple over the table, my face pressed into my hands, and cry harder than I have ever cried, the spasms so intense that I twist from my chair and tumble to the floor, shrieking and writhing among the envelopes, streaking them with tears. It is as if I am being torn in two down my centre line; I have never experienced such an intense bifurcation of soul." Throwing oneself to the ground and choosing such extreme words as "shrieking and writhing" suggests to me an extreme psychological break, what used to be called a nervous breakdown. And yet Lyndsey then says that she gets herself back together and sits back down and finishes putting together her wedding invitations.
In response to having to seal out all light from her bedroom: "When I have finished, I lie exhausted on the bed. I feel as though I have completed a long and arduous operation involving the amputation of one of my own limbs." Goodness. Yes, I imagine that accepting this defeat against the light and understanding that the way one reacts to the world has changed and that she's doing her best to relate how all of this must have felt... but "I feel as though I have completed a long and arduous operation involving the amputation of one of my own limbs"? I sense that throughout the editing process, the editor may very well have had to explain, "No, no, we need to cut out all these literallys because I'm not sure you understand precisely what that means."
Lyndsey fortunately seems to have a relatively significant amount of money at her disposal that allows her to be able to separate herself from the world with little attempt at some kind of work (early on in her process she met a man with the same sort of responses to light who quickly rigged up a projection system for himself so he could continue working from home) and a fiercely supportive husband who does all he can to help her and make her happy. Lyndsey does venture into becoming piano teacher at home but never explains how she expects to teach in the dark. She frequently writes how, if there was a hitch in their wedding plans, or she wanted someone to accommodate her in some way, she threw money at the situation and was shocked when this didn't always resolve the concern. There is a point in the narrative where her boyfriend must go away for two trips close to one another, one for work and one to take a break from the caregiving. While Lyndsey acknowledges that he must have some difficulties and yes, sure, he should get away and take a break, she freaks out over this news and starts calling her family members who have already rearranged their schedules to come to her home while her (then) boyfriend is away on a holiday, asking them to also come while he's gone for work. When they can't fall in line immediately, she acknowledges, "I do not need a carer. What I need is something more abstract and intangible: a human presence about the place, occasional company when I have to go into the black, company that understands my situation and cares enough to observe the protocols, waiting till I'm out of the room and closing the door prior to turning on overhead lights." First of all: not occasionally. Her boyfriend seems to be there at all times when he's not working, but she requires that someone take his place when he needs to be away, despite her admittance that she doesn't literally need a caregiver, just someone to be sympathetic to her situation and turn on lights when she's not in the room? This, this is when I was reading and started edging over to the side of those who question the psychological involvement of this situation. This feels needy and narcissistic and manipulative and destructive to her relationships. And then! Then, her brother ends up coming to stay while her boyfriend is gone (despite already needing to do so just a short while later); he finds little in the house to make dinner with and substitutes an onion with a head of garlic. After making her dinner and then sitting in her room to entertain Lyndsey by talking to her for hours, she bitches about the smell of garlic in her room. This, despite that Lyndsey repeatedly says in earlier situations that she CAN make dinner, so long as it's after dark.
She also compares her situation to that of Jean-Dominique Bauby, author of The Diving Bell and the Butterfly. She actually wonders whether, if faced with the choice, Bauby would have traded places with her. Sure, his situation was difficult, she reasons, but given her life, surely he would hesitate? Again, yes, I acknowledge that Lyndsey's condition must be very difficult to contend with but... REALLY? You're wondering whether a man who suffered such a debilitating stroke that he was locked into his own brain (for a long time, no one even knew he was mentally functioning in there) with the rest of his body paralyzed so that he could literally only blink out his entire memoir with one eyelid would want to change places with you? Let me answer that question for you... no, no, despite how long I've already rambled on here, I'm not going to waste the energy pressing the keys on this laptop to answer that question for you.
Okay, so. I guess I didn't realize the strength of my prejudices against this memoir until detailing them all just now. Perhaps I am not walking away feeling as sympathetic as I initially believed. The story is interesting, I'll grant that, and the writing is often insightful and beautiful (when she's not providing metaphors that are too much of a stretch for me to accept).
*Advance copy provided by Random House.
At first, it was just on her face, and only with the light from her computer screen. Lyndsey tried to get by for some time but eventually had to take what she expected to be a short hiatus from work. She never returned. The treatment prescribed to her resolved the burning on her face for a while... only to seemingly transfer it to the skin on the rest of her body, and to include all sources of light, from electronics to florescent lights to the sun.
This narrative feels somewhat like a cobbled together narrative of Lyndsey's experience. There is a chronological flow, but it is interrupted by her sharing the things she does to pass her hours in the dark, including audiobooks and mental games. There's some level of disjointedness but not so much that I lost the thread, and there's a hell of a lot of emotion here.
And therein lies some of my hesitation. Absolutely, she's dealing with a medical condition that I have been fortunate not to. These things must be noted and discounted against me when one considers my criticisms. But, unfortunately, I do have a few.
Though up until this point, the stories I've read about victims of this condition, they've always shared that their sensitivity to light results in burns and blisters to the skin. Lyndsey repeatedly shares in her narrative that she does not have a physical reaction of her skin. It is all pain in the form of a burning sensation but this never seems to manifest in physical damage to her skin. I am sorely prejudiced against people who cry, "psychological problem!"when encountering a medical condition they don't understand, particularly when it comes to women. I've had it happen to me. Lyndsey has had this happen to her, and she articulates her frustration with this very well. But given the other evidence I've seen about this condition, by the end of the book I was sort of slightly suspicious myself. I dislike my response to this but I couldn't help it. Two things here: if Lyndsey IS actually experiencing some psychological disorder involvement in her illness, despite her protests, that doesn't make her illness any less serious, and it doesn't invalidate her symptoms. I can't help but wonder if such a consideration could actually be helpful in diagnosis and resolution. But I also understand that when a person experiences an illness in a painful physical form, it's very easy to feel disregarded when there's even the slightest hint that a psychological condition may at be at least partially in play. Second, I easily acknowledge that there may very well be wholly physical photosensitivity disorders not causing outward physical manifestations that we have yet to understand. Also, I clearly haven't exhausted all scientific or medical literature to know the potential possibility of cases such as Lyndsey describes.
My other hesitation throughout this memoir, and potentially connected to the one above, is some of Lyndsey's descriptions of her illness and response to it. Much if it seems quite... hyperbolic to me. YES, she has a painful response to light. YES, she is forced to remain in a darkened room when the sun is out (and sometimes, during the lowest times, even in the evenings). But... here:
In response to realizing that her life will not be the same: "I crumple over the table, my face pressed into my hands, and cry harder than I have ever cried, the spasms so intense that I twist from my chair and tumble to the floor, shrieking and writhing among the envelopes, streaking them with tears. It is as if I am being torn in two down my centre line; I have never experienced such an intense bifurcation of soul." Throwing oneself to the ground and choosing such extreme words as "shrieking and writhing" suggests to me an extreme psychological break, what used to be called a nervous breakdown. And yet Lyndsey then says that she gets herself back together and sits back down and finishes putting together her wedding invitations.
In response to having to seal out all light from her bedroom: "When I have finished, I lie exhausted on the bed. I feel as though I have completed a long and arduous operation involving the amputation of one of my own limbs." Goodness. Yes, I imagine that accepting this defeat against the light and understanding that the way one reacts to the world has changed and that she's doing her best to relate how all of this must have felt... but "I feel as though I have completed a long and arduous operation involving the amputation of one of my own limbs"? I sense that throughout the editing process, the editor may very well have had to explain, "No, no, we need to cut out all these literallys because I'm not sure you understand precisely what that means."
Lyndsey fortunately seems to have a relatively significant amount of money at her disposal that allows her to be able to separate herself from the world with little attempt at some kind of work (early on in her process she met a man with the same sort of responses to light who quickly rigged up a projection system for himself so he could continue working from home) and a fiercely supportive husband who does all he can to help her and make her happy. Lyndsey does venture into becoming piano teacher at home but never explains how she expects to teach in the dark. She frequently writes how, if there was a hitch in their wedding plans, or she wanted someone to accommodate her in some way, she threw money at the situation and was shocked when this didn't always resolve the concern. There is a point in the narrative where her boyfriend must go away for two trips close to one another, one for work and one to take a break from the caregiving. While Lyndsey acknowledges that he must have some difficulties and yes, sure, he should get away and take a break, she freaks out over this news and starts calling her family members who have already rearranged their schedules to come to her home while her (then) boyfriend is away on a holiday, asking them to also come while he's gone for work. When they can't fall in line immediately, she acknowledges, "I do not need a carer. What I need is something more abstract and intangible: a human presence about the place, occasional company when I have to go into the black, company that understands my situation and cares enough to observe the protocols, waiting till I'm out of the room and closing the door prior to turning on overhead lights." First of all: not occasionally. Her boyfriend seems to be there at all times when he's not working, but she requires that someone take his place when he needs to be away, despite her admittance that she doesn't literally need a caregiver, just someone to be sympathetic to her situation and turn on lights when she's not in the room? This, this is when I was reading and started edging over to the side of those who question the psychological involvement of this situation. This feels needy and narcissistic and manipulative and destructive to her relationships. And then! Then, her brother ends up coming to stay while her boyfriend is gone (despite already needing to do so just a short while later); he finds little in the house to make dinner with and substitutes an onion with a head of garlic. After making her dinner and then sitting in her room to entertain Lyndsey by talking to her for hours, she bitches about the smell of garlic in her room. This, despite that Lyndsey repeatedly says in earlier situations that she CAN make dinner, so long as it's after dark.
She also compares her situation to that of Jean-Dominique Bauby, author of The Diving Bell and the Butterfly. She actually wonders whether, if faced with the choice, Bauby would have traded places with her. Sure, his situation was difficult, she reasons, but given her life, surely he would hesitate? Again, yes, I acknowledge that Lyndsey's condition must be very difficult to contend with but... REALLY? You're wondering whether a man who suffered such a debilitating stroke that he was locked into his own brain (for a long time, no one even knew he was mentally functioning in there) with the rest of his body paralyzed so that he could literally only blink out his entire memoir with one eyelid would want to change places with you? Let me answer that question for you... no, no, despite how long I've already rambled on here, I'm not going to waste the energy pressing the keys on this laptop to answer that question for you.
Okay, so. I guess I didn't realize the strength of my prejudices against this memoir until detailing them all just now. Perhaps I am not walking away feeling as sympathetic as I initially believed. The story is interesting, I'll grant that, and the writing is often insightful and beautiful (when she's not providing metaphors that are too much of a stretch for me to accept).
*Advance copy provided by Random House.
January 7, 2015
I feel like I should add a disclaimer when it comes to Girl in the Dark: this isn't a book that's told in chronological order, but rather told in vignettes that follow no type of order whatsoever. So, if you're one of those readers that is bothered by that, I'd say skip this book. I'm not usually into writing that goes back and forth and doesn't follow chronological order because it tends to seem scattershot. And it did seem scattershot in Girl in the Dark. However, I understand why the author wrote it in the way she did.
The Somewhat Good: Girl in the Dark was written in lyrical prose, which for the most part is a good thing since it kept me more engaged than I would have been if it was just told in a matter of fact way. However, at times I feel like she crossed the line from lyrical into pretty purple prose that seemed a little too flowery and came across (to me anyway) as not completely genuine. I do have to say, though, that her descriptions of what it is to not read the written word were spectacular and definitely hit home for a voracious reader such as myself.
The Okay: Despite the fact that Girl in the Dark is only a mere 257 pages (or at least my ARC copy is), it felt extremely long. I'm with those other reviewers (on Goodreads) that say that it would have made more of an impact on them (and me) had this been an essay or a magazine article. It just felt like every single one of its 257 pages. It didn't feel like a short read, even though it was.
Overall, despite the issues I had with Girl in the Dark, I still found it to be an enlightening read. It does give some insight into what it's like living with an unmanageable disease that has had very little research done on it and doesn't have a cure. I'd still recommend this book.
The Somewhat Good: Girl in the Dark was written in lyrical prose, which for the most part is a good thing since it kept me more engaged than I would have been if it was just told in a matter of fact way. However, at times I feel like she crossed the line from lyrical into pretty purple prose that seemed a little too flowery and came across (to me anyway) as not completely genuine. I do have to say, though, that her descriptions of what it is to not read the written word were spectacular and definitely hit home for a voracious reader such as myself.
The Okay: Despite the fact that Girl in the Dark is only a mere 257 pages (or at least my ARC copy is), it felt extremely long. I'm with those other reviewers (on Goodreads) that say that it would have made more of an impact on them (and me) had this been an essay or a magazine article. It just felt like every single one of its 257 pages. It didn't feel like a short read, even though it was.
Overall, despite the issues I had with Girl in the Dark, I still found it to be an enlightening read. It does give some insight into what it's like living with an unmanageable disease that has had very little research done on it and doesn't have a cure. I'd still recommend this book.
Read
March 2, 2015Going into Anna Lyndsey’s memoir, you kind of don’t know what to expect. She suffers from a light sensitivity of unknown origin – at first, the sensitivity is slight, only her face reacting to the glare of a computer screen. And then more severe, a burning sensation like “a blowtorch” against her skin. She is driven out of her job and into her boyfriend’s spare bedroom as the impact becomes worse and worse, getting to the point where she spends weeks and months ensconced in a pitch black room, with foil taped to the windows and fabric pressed to the crack under the door. As terrifying as her story is, the beauty of her memoir is not in the things she’s lost, but in the small moments that she can appreciate. She has brief moments of remission, where she can be outside during dawn and dusk, and the simplest of things – the smell of roses in a garden after dark, the sensation of standing in a rain shower – these are the joyful and heartbreaking moments in her story. As she tells her beautifully-written story, you want there to be a happy ending, you want her to recover from this, but at the same time, you know that this is an unlikely conclusion. The resolution is not so much in a cure; the resolution of her story is a reminder to the reader to savor and appreciate those parts of our world that we normally overlook. How satisfying the crunch of snow under our feet, the sting of the winter wind, when the alternate is a lightless prison in your own skin. — Rachel Manwill
From The Best Books We Read In February: http://bookriot.com/2015/03/02/riot-r...
From The Best Books We Read In February: http://bookriot.com/2015/03/02/riot-r...
March 7, 2019
Holy crap- whine much? I hated this book.
Partly becasue there is a good deal of waffling on how much light she could or could not handle - she couldn't make love to her husband even in her blacked out room unless she was fully dressed, yet on the next page she accidentally wandered around the rest of the apartment in broad daylight unclothed because she forgot precautions.. there are a lot of these little (?) discrepancies.
Mostly I hated it becasue she is BITTER and pathologically co-dependant. Her one-man pitty-party is so extreme it leaves no room for guests. There is nothing uplifting or admirable. I know this isn't fiction and these are harsh words, but it is the truth. There is no whit, only whining. There is no generosity, she is envious and self pitting. There is no power, no endurance.
She has more to complain about than many, but listen to her and you'd think that orphans in Calcutta are lucky to starve in the dirt because the unrelenting sun beats down on their naked helpless 5 year old bodies. This woman can't handle a three day weekend without her husband and her mother in-house to cater to her. She doesn't have CP or a stroke, or a thousand other things. What she has is a supportive family, a bitter heart and a selfish disposition; oh yeah, and a sensitivity to light.
I can't stand her.
Partly becasue there is a good deal of waffling on how much light she could or could not handle - she couldn't make love to her husband even in her blacked out room unless she was fully dressed, yet on the next page she accidentally wandered around the rest of the apartment in broad daylight unclothed because she forgot precautions.. there are a lot of these little (?) discrepancies.
Mostly I hated it becasue she is BITTER and pathologically co-dependant. Her one-man pitty-party is so extreme it leaves no room for guests. There is nothing uplifting or admirable. I know this isn't fiction and these are harsh words, but it is the truth. There is no whit, only whining. There is no generosity, she is envious and self pitting. There is no power, no endurance.
She has more to complain about than many, but listen to her and you'd think that orphans in Calcutta are lucky to starve in the dirt because the unrelenting sun beats down on their naked helpless 5 year old bodies. This woman can't handle a three day weekend without her husband and her mother in-house to cater to her. She doesn't have CP or a stroke, or a thousand other things. What she has is a supportive family, a bitter heart and a selfish disposition; oh yeah, and a sensitivity to light.
I can't stand her.
June 2, 2019
Quella che dapprima sembra essere una reazione alle luci artificiali dovuta allo stress si manifesta poi in tutta la sua tragica portata. Faccia, mani, gambe, poi l’intero corpo di Anna sviluppano una reazione allergica alla luce. La diagnosi sembra essere di dermatite seborroica fotosensibile, ma la prognosi è incerta. Ostacolata da una malattia che le impedisce qualsiasi contatto con la luce, Anna non può sottoporsi a visite dermatologiche specializzate e trova sollievo solamente nella più totale oscurità. Ha così inizio per lei un’esistenza in cui, a distanza di anni da quel primo episodio davanti al computer, audiolibri e giochi al buio diventano l’unico passatempo possibile. Non ci sono studi clinici randomizzati e la scienza stessa tace e non si esprime su questa rara malattia cronica. Ma Anna non si abbatte e cerca online sintomi, conseguenze, integratori, qualunque cosa possa alleviare il bruciore della sua pelle.
Una lettura che mi ha emozionata, costretta a rivedere l'ordine delle cose importanti nella vita e delle priorità. È un omaggio all'amore incondizionato perché Pete è un uomo amorevole e devoto, un dono per Anna
Una lettura che mi ha emozionata, costretta a rivedere l'ordine delle cose importanti nella vita e delle priorità. È un omaggio all'amore incondizionato perché Pete è un uomo amorevole e devoto, un dono per Anna
November 11, 2015
It would be so hard for me to have this disease. I don't know if I could have handled it like Anna Lyndsey does. This is a very well written memoir.
October 28, 2020
A very interesting and yet informative story about chronic illness. It's easy to take your health for granted. When you're young and healthy, you typically just don't know to even question it. It's as you get older and your body starts hurting or coming up with ailments that you start to even contemplate it. Anna didn't have that luxury. She started to notice her face heating up and hurting as she sat in front of her computer screen at work. She moved from discomfort to having multiple fans on her face at one time. And thing escalated from there.
I can't even imagine being allergic to the light, light in any forms - tv, lights, computer, sun - all of it. Her way of telling the story - little tidbits of agony and confusion and dark - broken up with silly stories about games she played in the dark with her friends and family and even her SO to break up the dark and quiet. The story feels dark at times, as she struggles with life and hope and her dreams vs reality, but it does well to not get too dark or too desolate.
It's well told and an interesting read. I'm glad I gave it a try.
I can't even imagine being allergic to the light, light in any forms - tv, lights, computer, sun - all of it. Her way of telling the story - little tidbits of agony and confusion and dark - broken up with silly stories about games she played in the dark with her friends and family and even her SO to break up the dark and quiet. The story feels dark at times, as she struggles with life and hope and her dreams vs reality, but it does well to not get too dark or too desolate.
It's well told and an interesting read. I'm glad I gave it a try.
January 14, 2021
I spotted a copy of Anna Lyndsey's memoir, Girl in the Dark, whilst browsing in my local library. I hadn't heard it before, but was drawn to both the title and design, and decided to pick it up. A work of memoir, Girl in the Dark has been described as, variously, 'beautifully affecting' (Observer), 'a gift, a testament to the power of art as a saving grace' (Susannah Cahalan), and filled with 'melodic, penetrating prose' (New York Times).
Lyndsey, who writes here under a pseudonym, had a full, normal life; she was working in a policy job for the government, and was under the spell of a budding new romance. However, she began to experience quite unusual symptoms, which sometimes got worse, and sometimes disappeared altogether for a long period, before coming back with a vengeance. She spent time away from work, and sought the opinions of many experts, who batted around diagnoses.
These symptoms were the beginning of her developing an extreme sensitivity to light, which has forced her to have to spend most of her time in a darkened room, with blacked-out windows, and no screens. During her best periods, Lyndsey is able to venture outside at dawn and dusk; at others, though, she has to spend months indoors, being incredibly careful when she ventures from the safety of her dark bedroom. Lyndsey is, after some time, diagnosed with a disorder called photosensitive seborrhoeic dermatitis, a skin disease caused by light.
Girl in the Dark, first published in 2015, is the account of her 'descent into the depths of her rare and terrible illness and how she has managed to find light in even the darkest of times'. I am always drawn to illness narratives, but have never read anything specifically about light sensitivity before. Throughout, Lyndsey educated me as to how difficult - almost impossible - it can be to create full, unnatural darkness. The first chapter, 'Light Gets In', sets out how infuriating the process of making her bedroom a safe space was: 'The light is laughing at me; it is playing deliberate games, lying low to persuade me that I have made an area secure, then as soon as I move on, wriggling through some overlooked wormhole. The day beyond my window is an ocean, pressing and pulsing at my protecting walls...'.
When Lyndsey comes into contact with any light, natural or otherwise, her skin becomes hypersensitive, and the effects of exposure can stay with her for weeks. She tells us: 'Immediately I leave my blacked-out room, a clock is ticking; my skin begins its twisted dialogue with light... There are no blisters and no blotches - I am free of visible signs of conflict. But agonisingly, with ever-increasing ferocity, over the whole covering of my body, I burn with invisible fire.' Summers are almost unbearable, and she has to cover every single inch of her skin with fabric, even in the depths of a heatwave. She develops a dependence upon audiobooks, as she is unable to grant herself the gift of enough light to read by.
Lyndsey details her growing familiarity with living in total darkness, in honest and insightful prose. She writes of things I cannot personally dream of losing - the joy of a walk outside in the sunshine, the simple light of a lamp shining in a bedroom at night - in a narrative which made me feel as though I was experiencing everything alongside her. She writes that even being close to the presence of light is highly affecting, and details her joy when she is able to move out of her bedroom, even for the briefest while: 'When I hover on the threshold between the inside and the out - opening or closing a fanlight, or beside an open door at night - the smell fizzes in my nostrils like champagne.'
Throughout, Lyndsey intersperses dated portions of memoir with her reflections and dreams. She moves from her present day back to the early days, before her diagnosis, when she was able to work and travel freely. The short sections which make up the structure of Girl in the Dark are effective, and largely deal with one particular element of her condition, or the ways in which she must now indefinitely live with it.
Lyndsey muses, quite heartbreakingly in places, about the pressure she is putting on her husband by dint of her condition. She writes: 'By staying, by shirking the responsibility and effort of leaving, by continuing to occupy this lovely man while giving him neither children nor a public companion nor a welcoming home - do I do wrong?'
As one might expect, the entire memoir is incredibly reflective. Lyndsey writes: 'And I think back to the life I had before, a live of very ordinary components, with the usual balance of frustration and contentment, the standard complement of light and shade. And I remember the beginnings of the darkness and where it planted its first roots, smack into the centre of that life.' Other relationships break down, and she comments occasionally on the scepticism which others have upon learning of her condition.
Over time, she gets to know others with chronic illnesses, and different variations of light sensitivity: 'Like me,' she writes, 'they had a life before that has been lost; now they wander in the twilight zone where doctors diagnose but cannot cure, and the faint miasma of societal suspicion, never attached to those with cancer, or with heart disease, hangs about them, that somehow it must all be psychosomatic, or that at a deep level they actually want to be ill.'
In Girl in the Dark, Lyndsey provides a fascinating and candid insight into her illness. Her prose is careful and measured, and there is a real lyricism to it. Whilst I cannot say that this was an entirely comfortable read, which really brought to my attention things that I perhaps take for granted, and which Lyndsey has lost, I feel that Girl in the Dark is an incredibly important memoir, and one which deserves to be read more widely.
Lyndsey, who writes here under a pseudonym, had a full, normal life; she was working in a policy job for the government, and was under the spell of a budding new romance. However, she began to experience quite unusual symptoms, which sometimes got worse, and sometimes disappeared altogether for a long period, before coming back with a vengeance. She spent time away from work, and sought the opinions of many experts, who batted around diagnoses.
These symptoms were the beginning of her developing an extreme sensitivity to light, which has forced her to have to spend most of her time in a darkened room, with blacked-out windows, and no screens. During her best periods, Lyndsey is able to venture outside at dawn and dusk; at others, though, she has to spend months indoors, being incredibly careful when she ventures from the safety of her dark bedroom. Lyndsey is, after some time, diagnosed with a disorder called photosensitive seborrhoeic dermatitis, a skin disease caused by light.
Girl in the Dark, first published in 2015, is the account of her 'descent into the depths of her rare and terrible illness and how she has managed to find light in even the darkest of times'. I am always drawn to illness narratives, but have never read anything specifically about light sensitivity before. Throughout, Lyndsey educated me as to how difficult - almost impossible - it can be to create full, unnatural darkness. The first chapter, 'Light Gets In', sets out how infuriating the process of making her bedroom a safe space was: 'The light is laughing at me; it is playing deliberate games, lying low to persuade me that I have made an area secure, then as soon as I move on, wriggling through some overlooked wormhole. The day beyond my window is an ocean, pressing and pulsing at my protecting walls...'.
When Lyndsey comes into contact with any light, natural or otherwise, her skin becomes hypersensitive, and the effects of exposure can stay with her for weeks. She tells us: 'Immediately I leave my blacked-out room, a clock is ticking; my skin begins its twisted dialogue with light... There are no blisters and no blotches - I am free of visible signs of conflict. But agonisingly, with ever-increasing ferocity, over the whole covering of my body, I burn with invisible fire.' Summers are almost unbearable, and she has to cover every single inch of her skin with fabric, even in the depths of a heatwave. She develops a dependence upon audiobooks, as she is unable to grant herself the gift of enough light to read by.
Lyndsey details her growing familiarity with living in total darkness, in honest and insightful prose. She writes of things I cannot personally dream of losing - the joy of a walk outside in the sunshine, the simple light of a lamp shining in a bedroom at night - in a narrative which made me feel as though I was experiencing everything alongside her. She writes that even being close to the presence of light is highly affecting, and details her joy when she is able to move out of her bedroom, even for the briefest while: 'When I hover on the threshold between the inside and the out - opening or closing a fanlight, or beside an open door at night - the smell fizzes in my nostrils like champagne.'
Throughout, Lyndsey intersperses dated portions of memoir with her reflections and dreams. She moves from her present day back to the early days, before her diagnosis, when she was able to work and travel freely. The short sections which make up the structure of Girl in the Dark are effective, and largely deal with one particular element of her condition, or the ways in which she must now indefinitely live with it.
Lyndsey muses, quite heartbreakingly in places, about the pressure she is putting on her husband by dint of her condition. She writes: 'By staying, by shirking the responsibility and effort of leaving, by continuing to occupy this lovely man while giving him neither children nor a public companion nor a welcoming home - do I do wrong?'
As one might expect, the entire memoir is incredibly reflective. Lyndsey writes: 'And I think back to the life I had before, a live of very ordinary components, with the usual balance of frustration and contentment, the standard complement of light and shade. And I remember the beginnings of the darkness and where it planted its first roots, smack into the centre of that life.' Other relationships break down, and she comments occasionally on the scepticism which others have upon learning of her condition.
Over time, she gets to know others with chronic illnesses, and different variations of light sensitivity: 'Like me,' she writes, 'they had a life before that has been lost; now they wander in the twilight zone where doctors diagnose but cannot cure, and the faint miasma of societal suspicion, never attached to those with cancer, or with heart disease, hangs about them, that somehow it must all be psychosomatic, or that at a deep level they actually want to be ill.'
In Girl in the Dark, Lyndsey provides a fascinating and candid insight into her illness. Her prose is careful and measured, and there is a real lyricism to it. Whilst I cannot say that this was an entirely comfortable read, which really brought to my attention things that I perhaps take for granted, and which Lyndsey has lost, I feel that Girl in the Dark is an incredibly important memoir, and one which deserves to be read more widely.
May 9, 2018
Beautiful and brave; it made me stop and think about how much light plays a part in my life and feel grateful for being able to live in it. I marvel at Anna's determination, but also the bravery with which she continues to live every day and every hour.
This entire review has been hidden because of spoilers.
February 21, 2015
Girl in the Dark is a memoir about how a British woman deals with development of extreme sensitivity to light. It is written in 2 - 5 page sections that cover different aspects of her life, mostly about her dark and partially light periods.
One her worst days, she must stay indoors in a black-out room with no natural or artificial light, venturing into the dimmed house briefly for food. On better days, she can run to the car into what she calls her "puppy crate", where she can be in total darkness until they get to woods where she can walk near dusk and near dawn. One mistake and she is thrown back to her room for days, weeks, or months until her skin stabilizes. The book gets more enjoyable for the reader (and the author) when she can get out.
It is very interesting to hear about how she manages to live such a constricted life - what she does to occupy herself (mental games, Pilates, listening to books) and how she manages emotionally and fends away despair. She writes about putting on the “corset of cheerfulness” when friends visit to hold in the bulgings and oozings of emotion, and about the loss of friendship: “Friendship plants itself as a small unobtrusive seed; over time it grows thick roots that wrap around your heart. When a love affair ends, the tree is torn out quickly, painful but clean. Friendship withers quietly, there is always hope of revival. Only after time has passed do you recognize that it is dead, and you are left, for years afterwards, pulling dry brown fibres from your chest”.
She reflects thoughtfully on many things - fascination with stories of other people who have lived imprisoned lives, how despair increases when things start to get a little better, suicide. She cleverly provides the “ABC’s” of things she has tried to get better. The writing is good and although some of the descriptions are over the top, many are vivid and compelling. For her, seeing and being in nature is the height of happiness, so she can be forgiven for over blown scenes.
Girl in the Dark isn’t an easy read. I read it slowly in 10 - 20 pages spurts. I have thought about it a lot and have gone back to re-read sections, which have stood up well. Her introspections provide many things for others with chronic illness and those of us who are still well to think about. Thinking of her deprivations makes me grateful, of course, for having the freedom I have. While this would be true for many stories, I felt it more deeply because it is outdoors and nature that she yearns for.
More information: NPR recently posted audio of portions of the book:
http://www.npr.org/2015/02/17/3869530...
March 9, 2015
This book was an unexpected gift (no, really, it arrived on my desk one morning, as part of a YPG mailing; instantly, I was taken by the cover - that blackness interrupted by tiny pin-pricks of light - and the title, Girl in the Dark: A Memoir ; even without reading the description on the flap, I felt my fingers and my eyes being drawn to the first page; and yet it is not a book that I would have picked up on my own; stranger still, it was exactly the book I needed to read at that moment).
Anna Lyndsey (not the author's real name) suffers a unique and terrifying illness: under exposure to light (any light) her skin burns, sometimes as though somebody were "holding a blowtorch to [her] face." Worse, relief does not come easily; instead she must learn, by painful experiment, how much light her body can (and cannot) tolerate. Eventually she finds that total relief comes to her only in a blacked-out room, where she has only the words of audio books to keep her company, and always, always, her own thoughts and memories, which can be...treacherous.
Under less skilful hands, this would have become a "poor me" tale - a record of things growing progressively worse; a chronicle of despair. Instead it is a brave and honest and occasionally mischievous account of a life with a severe chronic illness.
This is not to say that Anna does not rage or despair or cry foul - she does - but always she reaches for the light, literally and metaphorically. She will experience with new delight and fervor each new smell, new sight, new sound that is partially returned to her. And thus, she reminds the reader: "In the end, we have one choice: to suffer well or suffer badly, to reach for or to reject that quality which is termed, equally, by both religious and secular, grace."
Anna reaches for grace. She demonstrates strength and fortitude, and she manages to do it with lyrical prose. These were her true gifts to me.
Absolutely rereadable.
Anna Lyndsey (not the author's real name) suffers a unique and terrifying illness: under exposure to light (any light) her skin burns, sometimes as though somebody were "holding a blowtorch to [her] face." Worse, relief does not come easily; instead she must learn, by painful experiment, how much light her body can (and cannot) tolerate. Eventually she finds that total relief comes to her only in a blacked-out room, where she has only the words of audio books to keep her company, and always, always, her own thoughts and memories, which can be...treacherous.
Under less skilful hands, this would have become a "poor me" tale - a record of things growing progressively worse; a chronicle of despair. Instead it is a brave and honest and occasionally mischievous account of a life with a severe chronic illness.
This is not to say that Anna does not rage or despair or cry foul - she does - but always she reaches for the light, literally and metaphorically. She will experience with new delight and fervor each new smell, new sight, new sound that is partially returned to her. And thus, she reminds the reader: "In the end, we have one choice: to suffer well or suffer badly, to reach for or to reject that quality which is termed, equally, by both religious and secular, grace."
Anna reaches for grace. She demonstrates strength and fortitude, and she manages to do it with lyrical prose. These were her true gifts to me.
Absolutely rereadable.
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