Excerpt. © Reprinted by permission. All rights reserved.
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.
The books I listen to are random; they depend entirely on what is in the library when my book collector is there. I note down the titles on a list, divided alphabetically, so that my book collector does not bring me books I have had before. That apart, my rate of consumption is so rapid and my need so intense that I cannot afford to be fussy. There are only two curiously contrasting prohibitions on the list: “Nothing by James Patterson or Miss Read.” I can live without the former’s detailed descriptions of the minutiae of serial killing; the latter’s accounts of the life of a village schoolmistress achieve a mixture of cattiness and smugness that render me simultaneously irritated and comatose.
For the rest, I let my authors take me where they will.
In my life before, I read at speed, skimming over the page, extracting a broad impression, seeking out salient points with a sceptical, summarising eye. Sometimes I (whisper it) skipped descriptive passages altogether. Now I am a captive audience and must ingest every single word. I lie back and let the plot build round me slowly, brick by brick. I collaborate willingly in my own slow seduction, for what do I want from my authors but long, long-lasting release? I come to hate interruptions in the narrative, to dread the voice which says, “That is the end of this side. The story continues on the next cassette.” I grab for the next tape, scrabble it out of the tight-fitting plastic surround with my fingernails, slam it into the machine and push the button down. I am a patient on morphine whose fix has been interrupted, desperate to restart the pain-dulling feed. Close up the gaps, hurry through the changes: in those small silences despair, I know, can easily come crashing back.
By way of this unprecedented, unbridled literary promiscuity, I have made some pleasant discoveries. Having zero interest in racing, I would never, in the life before, have picked up one of Dick Francis’s horsey thrillers. But as companions in the dark, I find them amiably gripping. In one of them, the hero, a jockey-turned-accountant, is kidnapped and held in the dark in the back of a van for days, with only some bottled water and a bag of processed cheese for company; as my situation is somewhat better than his, I find this vaguely encouraging. The books celebrate the bloody--mindedness of the ordinary man: the hero will keep worrying away at a problem, and although he will certainly be knocked on the head, get tied up and suffer unpleasant consequences, he is never actually killed.
In the dark, although I listen to both, I prefer tapes to CDs. I am less likely to press the wrong button and become lost among the tracks, accidentally skipping forwards or entering a different mode, so that the sections unfurl in random order, or one repeats itself on an endless loop. In order to reverse what I have done, I have to carry my boombox downstairs, and peer at the tiny display as I poke away in the gloom.
I get to know the voices that speak to me from the corner of my dark room. There is the tough, macho chap with slightly Estuary vowels, who reads a lot of action thrillers. There is the deep-toned, chocolate-smooth voice, whose male characters are dashing and manly, but whose females, rendered in falsetto, all sound faintly imbecilic. There is the elegiac, lugubrious Michael Jayston, who specialises in the world-weary melancholy of P. D. James and John le Carre, and Miriam Margolyes, who creates so many characters with such distinctive voices that it is difficult to believe that there is only one woman in there, and not a troupe.
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?
During these intermissions, I put on Radio 4. It can be counted on to provide an unceasing stream of trivial earnestness, a gentle showerbath for the soul.
Moving About
When I am first in the dark, I frequently get lost. Even though the room is only a small space filled with simple objects--a bed, a bookshelf, a wardrobe, a bureau--the darkness can cause disorientation that is total, and terrifying. In my early days I find myself patting my hands across surfaces I cannot identify, feeling frantically for some sort of clue. Often my mind is absolutely convinced I am sitting on the floor facing in one direction, and then my hands start telling me something else. I cry out. The cognitive dissonance is overwhelming, like a physical rending of my brain.
But this rarely happens now. I am in my element. I move confidently about my box of darkness, lay my hand easily on the cotton-covered firmness of the bed, grasp the chair in the corner by the smooth curved poles that form its back, reach for the cool metal handle of the door and hear its catlike creak.
Sometimes I lose a sock, or my hairbrush, but there is no panic now, I feel calmly in each likely place, slowly passing from one to the other, and usually the object is found.
Gradually I do what is not in my nature; I develop routines: socks always go there, spectacles there. One day I reorganise my underwear drawer so that knickers are on the left and bras on the right. This puts an end to wild morning burrowing and flailing--I wonder why I have not done it before. But I know the answer to that. Simply--hope. Hope held me back. Each small accommodation of my physical environment is an admission that things are not improving, that this is not some fleeting horror, that perhaps . . .
But that is the unthinkable thought.
There is only one circumstance, now, where I can lose my orientation. Sometimes, in one of my small attempts to keep moving, to keep the blood flowing, I march on the spot. Often, I find, after a few minutes, that I have turned through 90 degrees, that the bed, rather than being beside me, is in front.
An anecdote told by a character in a thriller brings me the explanation. A man, lost in the Sahara, decides the best way out is to walk forward in a straight line. After several miles, he finds himself in the place where he started. Human legs are never of exactly equal length; you may believe you walk straight ahead, but slowly, imperceptibly, your course will curve, you will tread a circle, and your beginning will be your end.
Pete
In the house with the drawn curtains and the sealed-up room, there is a second person living.
He is Pete, the person that I love. It is his house I wear, his rooms I have dimmed to quarter-light, his spare bedroom I have commandeered to make my lair.
My love has saved me. It wraps strong arms around me when I cry with despair; it gives me the routine of a working week to lend vicarious structure to my shapeless days. It brings me daily laughter, a reason to keep washing . . .
. . . and it slices me open with guilt. For I am creating two shadow lives, where there need only be one. I am sucking the light from Pete’s life, leaving him a twilit, liminal creature, single yet not single, who at social events sits alone among the couples, with a strange absent presence always by his side.
I argue with myself during my long periods alone. I undertake lengthy ethical investigations and conduct detailed philosophical analyses. I am trying to discern the behaviour that would, in my circumstances, be morally right. Should I leave him?
This would be difficult, practically; it would require time, research and careful organisation--but it could just about be done. I would need to find another place to live, with another blacked-out room; either a place on my own, with people nearby who could be paid to do my shopping, or a place with someone who was prepared to look after me, prepared to close doors before they switch on lights, pull curtains before I come into a room; someone I could trust, because I would be at their mercy.
I pummel my conscience for an answer. 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?
This is how I reason, hour after hour. Then I hear his key in the door, and his tread on the stairs. I hear him call out
“Wotcher, chuck!” and stomp about in the bedroom next door as he takes off his shoes and tie and puts on his slippers. Then he knocks at my door, and I say “Come in,” and scramble up to hug him.
And all my ethical reasoning crumbles to ash in the sheer fact of his presence. Because together, even in darkness, we light up a room; because the clotted guilt inside me breaks up and disperses before a surge of stupid happiness; because I love him, and I know I cannot leave him, am incapable of leaving him, unless he asks me to go.
And he has not asked me.
And that is the miracle which I live with, every day.
