It’s February and as often happens at this time of the year I’ve been feeling a little sorry for myself – life’s a bit dull, I’m in one of my periodic energy dips and winter seems to have dragged on too long despite the fact that we’ve been spared the wet miseries of last year. Reading Anna Lyndsey’s eloquent memoir, Girl in the Dark, put the kibosh on that little whingy outbreak of self-indulgence: she suffers from a form of dermatitis so extreme that long periods of her life are spent in a blacked out room, unable to tolerate any kind of light.
It opens with a particularly vivid chapter as she frantically tries to light-proof a room in the house she shares with her partner, Pete. Even the smallest sliver will burn her skin. A sensitivity which began when sitting in front of computer screens, then extended to fluorescent light now includes sunlight. She must confine herself to this single room, only venturing downstairs when Pete has taken the elaborate precautions necessary for them to eat together. Despite the blackout she must dress in many protective layers so that no light penetrates her clothing. Once an ambitious civil servant with ten years in Whitehall under her belt, Lyndsey is now dependent on Pete to help her navigate this devastating condition. Her days are spent listening to talking books – she discovers a surprising predilection for SAS novels although she’ll listen to anything except James Patterson or Miss Read. Radio 4 provides a much-needed alternative but music is to be avoided. It taps too deeply into her emotions dissolving the ‘careful stoicism’ needed to cope with her illness and all that entails. Girl in the Dark is Lyndsey’s account of the ways in which she has learned to deal with her disability and what it’s like to live a life so narrow. It’s also a quiet testament to love: Pete, practical and down to earth, takes each development in her condition as it comes, helping to solve seemingly intractable problems, only occasionally expressing his annoyance when one of the wackier therapists Lyndsey turns to in desperation starts hiding the food.
Lyndsey tells her story at first in a series of impressionistic snapshots – often vivid, sometimes funny – taking a more chronological approach in the second half when remissions are on the horizon. As she points out in her note at the end, time is somewhat elastic when you live much of your life in the dark. One of her strategies for dealing with boredom is playing word games which seems entirely appropriate given her facility with language. Her descriptions of the natural world which she and Pete explored in ‘the life before’ are quite beautiful, making them all the more poignant given what comes after. Her explorations of therapies – some conventional, some downright bonkers – are often very funny, and she’s entirely honest about the misery and suicidal thoughts that lurk at the back of her mind bursting out when left unsaid for too long. It’s impossible not to be awed by Lyndsey’s resilience, endurance and humour: at one point she writes ‘In the end we have one choice: to suffer well or to suffer badly’. She calls the quality she reaches for ‘grace’, and she has it spades.
What a profoundly disquieting and debilitating condition to have to live with – as you say, it helps bring out our own winter dark depression in perspective!
It certainly does. It’s an appalling condition to have to live with. She writes about it extraordinarily well.
How tragic! It’s easy to imagine wacky therapies being recommended for something I’m assuming traditional medicine can’t understand. Makes me grateful for words – even if she can’t use screens herself now, let’s hope she is able to enjoy connecting with others through her memoir.
I hope so to, Anne, and you’re right, the level of desperation felt in such a situation leaves you wide open to exploitation even for such a smart person as Lyndsey.
Oh my, this is one I absolutely have to read. It sounds like it is extremely well done. And big hugs to you, Susan. This is a rotten time of year, the dog end of winter, and I’m right with you in watching avidly for the spring to come!
Such a beautifully written memoir. I was left amazed at her resourcefulness and endurance in the face of such adversity.
Hugs to you, too! Crocuses,snowdrops and even a few daffodils out there now to brighten things up for us.
Blimey! This sounds both utterly fascinating and completely grim. What a dreadful condition to have to endure.
It’s both. Hard to imagine anything much worse. Each time I think about it I come up with yet another thing that feels essential in life that she’s unable to do.
Echo lots of replies… she so deserves her book to be read after what I imagine took extreme courage & determination to write with seemingly such grace, the grace she strives for; exemplified by her words: taps too deeply into her emotions dissolving the ‘careful stoicism’ needed to cope with her illness and all that entails…
She most certainly does. I have enormous respect for her fortitude. It’s humbling.