Read Girl in the Dark Online

Authors: Anna Lyndsey

Girl in the Dark

All events related in
Girl in the Dark
are factual. The author is using a pen name and has changed identifying details of people in the book to protect the privacy of her family, friends and associates. Conversations have been reconstructed from memory. See also the Author’s Note on
this page
.

Copyright © 2015 by Anna Lyndsey

All rights reserved. Published in the United States by Doubleday, a division of Random House LLC, New York, and in Canada by Random House of Canada Limited, Toronto, Penguin Random House companies.

www.doubleday.com

Published simultaneously in Great Britain by Bloomsbury, London.

DOUBLEDAY and the portrayal of an anchor with a dolphin are registered trademarks of Random House LLC.

Jacket design by Emily Mahon

Case photograph © Stocktrek/Getty Images

Library of Congress Cataloging-in-Publication Data

Lyndsey, Anna.

Girl in the dark : a memoir / Anna Lyndsey.

pages cm

ISBN 978-0-385-53960-9 (hardcover)—

ISBN 978-0-385-53961-6 (eBook)

1. Lyndsey, Anna—Health. 2. Photosensitivity disorders—Patients—England—Biography. 3. Skin—Inflammation—Patients—England—Biography. I. Title.

RL247.L96 2015

616.5′15—dc23        2014030839

v3.1

For my visitors

Contents

Light Gets In

It is extraordinarily difficult to black out a room.

First I line the curtains with blackout material, a heavy, plasticky fabric, strange flesh-like magnolia in colour, not actually black. But the light slips in easily, up and over the gap between the rail and the wall, and at the bottom through the loops made by the hanging folds.

So I add a blackout roller blind, inside the window alcove. But the light creeps in around the sides, and shimmies through the slit at the top.

So I tackle the panes themselves. I cut sheets of cooking foil, press them against the glass, tape them to the window frames. But the foil wrinkles and rips, refuses to lie flat. Gaps persist around the edges, pinpricks and tears across the middle. I tape and tape, tape over tape, foil over foil, layer upon layer. Instead of neat sheets of foil tethered by single strips of tape, the thing is becoming wild installation art. But I can’t stop. 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, and I must plug a leaky dike perpetually against its power.

At last, I think I may have done enough. I lower the blind on my crazy patchwork of foil, pull the curtains, place a rolled-up towel along the crack at the bottom of the door. I sit quietly on the bed, and wait for my eyes to adjust.

And I have it. Finally I have it. I have blackness.

I lie back inside my box of darkness, the new container for my life. I am overwhelmed with exhaustion and relief.

House

The house with the blacked-out room is not a large one. It is red brick with a tiled roof, a neat 1980s box. Downstairs there is a hall, a loo, a living room and a kitchen, upstairs three modest bedrooms and a bathroom. The garage joins it to the house next door, its mirror image, round the other way.

From the front garden, looking up, my black room is the one on the right-hand side. The house, alone among its companions, has one closed eye, and inside that dark eyeball, a pale girl.

When I come out of my black room, three closed doors lead from the landing; they are always kept shut.
The stairs curve downwards into gloom, because there is a curtain covering the glazed front door. I have learnt not to hurtle down them. I descend carefully, holding on to the handrail, placing a foot squarely on each step.

I go into the living room. At each end, the curtains are drawn; they are conventional curtains, so the room is not absolutely black. Armchairs and a sofa make humped shapes like resting elephants in the minimal light. The metal frames of pictures reflect odd gleams, the images themselves invisible. Around the dining table, chair backs and arms are a jumble of vertical and horizontal bars. From a corner, a standard lamp rears a sinister outsize head.

I move into the kitchen, and immediately pick up speed. Even though closed Venetian blinds filter the light that comes through its windows, this room is much brighter than the rest of the house. I grab the kettle, shove it under the tap, slot it on to its base and bang the button down. I swing round to a cupboard, extract a mug and a plate, and sidestep to another for a teabag. I take the plate, a knife and a packet of oatcakes into the gloom next door, set them on the dining table and listen as the kettle bubbles itself to a climax. When it’s clicked, I dart into the kitchen again, and with the economy and swiftness of a dancer, pour my tea, extract cheese from the fridge and, carrying both, withdraw.

Then, at the shadowy dining table, swift and concentrated eating.

For 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.

Medical

… The patient now reacts not only on the uncovered areas, but even through clothing,… resulting in severe painful reactions occurring on all areas of the body …

DIAGNOSIS:

The working diagnosis is photosensitive seborrhoeic dermatitis. This condition certainly can cause these types of very severe reaction, these being a well-recognised though rare syndrome, which is very frequently extremely disabling as in this case because of the need to avoid even low levels of exposure to relevant light sources …

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 whom 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 …

LIKELY PROGNOSIS:

Going on the experience with our other patients and on the literature about patients with these types of immediate reactions to light sources, the prognosis is very variable, but there certainly is a significant sub-set of patients whose problems persist in the long-term, sometimes very severely …

Talking Books

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.

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