In 2004, Anna Lyndsey’s face began to burn as she sat in front of her computer. Like the worst sunburn, like a hot torch. Her solution was a fan, blasting air directly onto her face as she typed. Her doctor put her on a list to see a dermatologist.
This was the beginning of sensitivity to light so severe that Lyndsey, writing under a pseudonym, found herself seeking comfort in a blackened room, dressed in thick garments from head to toe.
As I read this book in the Arizona sun, it at so many times seemed unbelievable, simply because my mind couldn’t comprehend skin pain so severe upon exposure to light that one finds themself in a forced retreat from the world of light and all that it brings. And yet, I get migraines, thumping headaches so severe above my eye and behind my neck that I too shut out the world, first seeing odd dots in my vision and quickly drinking water and texting people randomly, “Man, I hope I’m not getting a migraine rn.” An hour later I’ve given up, lights off and shades drawn and comfortable clothes on, a very simple mystery audiobook playing softly in the dark, as my head hurts.
And this is Lyndsey’s world, not once in a blue moon but every day, waking up and having her full day and then going to sleep again, in the dark. She loses herself in audiobooks, guests come to visit her and stumble in her dark lair, she hurries out of her fully blackened room into a less blackened home, down to a kitchen with painfully inadequate blinds, for apples and tea.
This is a brave book, but that doesn’t mean it is a pleasant read–like many intimate truths shared by strangers, it at times reads like a call for help, or at the bare minimum a cry for greater awareness. And if I was sitting in a darkened room, with a condition too rare for people to understand, I’d certainly write a call for help as well.
As I read, it was hard not to feel a bit like I was drowning in Lyndsey’s desperation, flipping through her short chapters, listing games she plays to distract herself and, in alphabetical order, solutions she’s tried. She relays dreams she has, of living a normal life in her apartment in the “before” the sickness, or memories of the “before” which seem to grow more vital as others around her live more complete lives and forget those few past memories she holds so dear.
She discusses suicide, honestly and with delicacy, in a way that we don’t often allow people to talk about it. She relays people’s reactions, as at times she must speak out–sitting in her dark room, questioning the value of her life, as she is thinking of ending it.
And human instinct, or at least my instinct, is to find her a solution. I know how frustrating this is, as I suffer my own health issues, and it’s amazing what people who don’t know you well will suggest. But here I am, thinking of solutions for a woman in a country I’ve never visited, with a condition I know nothing about. Her suffering is almost unbearable to read about, and yet it isn’t, because she is there, bearing it. She is writing beautiful prose about visiting a rose garden with her fiancé at dusk, in a time of remission when dusk is tolerable, and the air is heady with flowery scents.
Lyndsey’s prose is poignant, she’s an incredibly talented writer. Her love of words comes through in the memoir’s aspirational sentences, encompassing beauty and sadness, simple joys, gigantic desperation. It also shows in the endless word games she plays alone in the dark or with her visitors, guessing games or rhyming games.
Where the memoir was lacking for me, and this could be where the world itself is lacking in information, was with its information on photosensitivity in general. For such an unusual condition, I wanted more basic information to understand where Lyndsey was coming from. In one interesting chapter she gives a brief breakdown of the physics of light, and she talks of light resistant fabrics in passing, but I found myself immediately googling light sensitivity, and also hoping for interviews where she talked more about the medical side of things.
That her doctor won’t come to her home and examine her, which she relays in her book, made me irate through the entire thing. And I wonder if that has changed since the book’s publishing. Certainly, once you have written a book that people are reading internationally about your suffering, your doctor might make an exception and visit your home? Or maybe the book will attract the interest of international photosensitivity experts, who agree to take on Lyndsey’s case.
This is a book that doesn’t concern itself too much with linear time, so let that go as you are reading–at the end, Lyndsey provides a graph showing events, but the memoir reads like snippets of memory, recalled and then forgotten. Anyone who has their own often misunderstood medical issues will find themselves nodding in agreement through countless passages, despite never feeling a twinge of pain in the sun.
At one point Lyndsey shares the story of two frogs, who wind up flailing in two separate buckets of milk. One stops swimming and drowns, one swims and swims and never gives up and churns that milk into butter. He hops out of the buttery, slippery solid stuff, and lives to see the next day. Hopefully, this book is a bit of Anna Lyndsey’s pain and loneliness churning its way into something thicker, something she can use to stand upon, her own bit of light.
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