Girl in the Dark (12 page)

At the start of the voyage the sky was cloudless blue, and the spirits of the astronomers high. When we arrived at Alderney, however, a pall of grey had settled over the island, and the main topic of conversation was the prospects for it lifting before 10:12 a.m., the time of first contact, when the moon’s disc first touches the edge of the sun.

Buses were waiting for us on the quay. For a while, a large Womble danced ahead of us along the road, waving its arms in a cheerful manner, a traditional way, perhaps, of welcoming visitors to a place with fewer obvious attractions than the other Channel Islands, but which was the home of Elizabeth Beresford, who wrote the Womble books.

The buses deposited us at a ruined fort, a massive circle of jagged stone walls perched on cliffs above the sea. According to the notice boards it was used by the Germans when the islands were under occupation in the Second World War. The place had a strange bleak atmosphere, a sort of resistance to questioning. The flat expanse of ground within the walls was covered thickly with many kinds of weeds.

The astronomers swarmed over the fort, finding good places to set up, an occupying army bearing black, long-barrelled equipment, which they carefully angled heavenwards on spindly sets of legs.

The high grey cloud began to mottle and shift, becoming less uniform.

Then the eclipse was upon us, and the moon began to nibble at the edge of the sun.

More serendipitous gaps appeared in the messy spider’s web of cloud, revealing the protagonists in plain view. Through my eclipse glasses I saw the small black fingermark, the almost imperceptible imperfection, that was the beginning.

Then, as the moon slid further over the disc of the sun, the fort was illuminated by a melancholy golden light, as though at eleven o’clock in the morning evening had come, with the sun high overhead.

I looked through my glasses again, and watched a black lid slipping remorselessly over a jar of fire. Then, as the sky darkened, I stood precariously balanced on a flat slab of stone, and watched the moon’s shadow zoom towards us over the sea.

I will never forget the speed, the terrible speed of that approach. My breath stopped in my throat, as though the shadow itself sucked away the air as it dashed across the waves. We were being given a glimpse of the true speed of the rotation of the earth, of that perpetual, massive, onward roll going on beneath our feet. Soon there remained only one last bulge of radiance at the side of the sun, and a faint outline of the rest, the stage known as the “diamond ring.” Finally even that last bubble of light was extinguished. Night fell.

And then, two minutes later—the jar was slowly opened again. Once more, the gem now placed on the opposite side, there was a diamond ring, and then the mysterious, unearthly golden glow, this time signifying
a resurrected not a dying sun. By lunchtime, all had returned to normality, leaving a mood of euphoria that filled the fort. Everyone smiled at each other, because we knew that we had shared a memorable thing: for an infinitesimal fragment of cosmic time, we had put one finger on the pulse of the universe, and felt its beat.

In the weeks that follow the spare-room revelation, darkness rushes towards me, as the shadow of the moon rushed over the sea.

Outside the house I no longer leave, summer opens its jaws wider each day, revealing more of its teeth. With each rotation of the earth, the sun bounces up earlier in the morning, arcs higher, lingers longer around the shrinking pool of night. I have to keep the curtains closed, at first only halfway, then fully; at first only to keep out direct rays, then against the mere glare of the day, while the sun itself is busy round another part of the house.

Pete searches the Internet on my behalf. He finds a support group for people living with light sensitivity—part of the charity Lupus UK, but including members whose light sensitivity arises from some other source.

The name of the group is Eclipse.

There is a list on their website of products that might prove useful. We throw money at the problem—it seems rational to try everything.

A man comes with a squeegee, a spray gun and a
large roll of clear film. He spends a morning filming most of the windows of the house. The film stops the transmission of UV light, the highest and most damaging frequency.

I order UV-protective clothing from a specialist company. It is made of densely knitted nylon and Lycra, slightly stretchy, not very aesthetic. I have a hooded top and loose trousers in pale blue, plus grey socks; I feel like an extra from a science-fiction film.

For a few days, inside my new packaging, I have some relief. I seem to have found a plateau of stability where, if I live within certain parameters, my skin will not burn. I relax, even become cheerful, joking about my new suit.

But the stability is an illusion, the sensitivity soon on the march once more.

The experience is like falling over a cliff in slow motion. After each lurch downwards I think I’ve found a toehold, or a shrub to grasp to break my fall. I’m sure, each time, I must have reached a stable place, a place where, despite my undignified position, I can at least not slip further, can start to consider the options for climbing back to the top.

The ledge crumbles, the shrub rips from the cliff face, every, every time.

I lose myself in thick absorbent books. On Pete’s bookshelves I find the complete works of Jane Austen in a single volume, leather-bound in red. I start
Sense and Sensibility
sitting at a table in the living room with the curtain slightly open, but my posture becomes increasingly bizarre. After a few days I am crouched on the
floor, screened by a wall and an armchair, hunched over to catch the faintest flicker of print.

A few days later, Pete comes in from the local summer fete, carrying a big bag of books. He had been helping as usual on the second-hand book stall and has not been able to resist purchasing some of its wares. He finds me cross-legged on the sofa, in a curtained room, most of my body under a thick black padded anorak, wrapped around like a blanket, and I am reading
Persuasion,
by the indirect light that comes through the kitchen door.

“This seems to work,” I say to him, indicating the anorak, and I even smile. “Let’s see what you got.”

I think he is appalled, but he does not let it show. We look at the books he has bought. I am burying my head in alternative realities, forcing it out of my own.

S
OME TIME IN
the middle of all this is my follow-up appointment at the hospital. The idea that I could leave the house, let alone get to London, is laughable. I phone the photobiology clinic and explain my situation to the medical secretary. “OK, I’ll cancel that for you,” she says. “Give us a ring when you’re feeling better.”

I am not in a fit state fully to appreciate the irony of that response.

People continue to search online for something—anything—that could help. Parcels of A4 printouts
arrive for me in the post from friends of mine, of Pete’s, and of my mother’s, to whom, in desperation, she has poured out my story. There is a lot of information about photosensitivity, but nothing about photosensitivity as severe and unusual as mine.

Then, suddenly, from two directions, there is news: a scientific paper describing a case like mine in Sweden, and, via another support group, a contact for a real live person, living in the UK.

Somebody else like me.

His name is Jake and he lives in Manchester. He is in his thirties. He is excruciatingly sensitive to all forms of light.

I speak to his partner on the phone. “What he has found,” she says, “is that if he spends time in a completely blacked-out room, his skin builds up a bit of resilience, and he can tolerate some limited light, for a while, when he comes out.”

As soon as she says it, it makes sense to me. Already, in a confused way, I have been groping towards a similar conclusion. Scoured by the sun each day from 4 a.m., I know that normal curtains are no longer an effective bar. Now I have a clear picture of what I need, and, in anticipation, my skin breathes a sigh of relief. I start to yearn for the dark, I want it now, I do not want to wait. A dying traveller in a desert strains to glimpse the saving glint of water; I long for the space before my eyes to void itself of every hint of light.

It is not easily achieved. Materials and fixings must be obtained, and even after they are installed, I have to resort to foil.

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. In fact I have merely hacked away the light from my life, but it has been a procedure equally grisly, complex, necessary, traumatic and appalling. Around me in the darkness the carpet, the walls, the curtains and the bookshelves swim with invisible gore.

I am beyond thinking. I have reached my vanishing point.

A
FTER A WHILE
I come round, to find strange sounds emanating from the room below. There is jeering and yelling, and the rise—rise—rise—and fall of commentary. Pete’s voice suddenly exclaims, “Oh!… ah …” then “YESSS!”

It is the World Cup of 2006, and somebody has just scored a goal.

There were many things I wanted to be different, in the life before. I wanted to be more organised so that I left work on time, and could undertake some regular evening activities. I wanted to be more confident when giving presentations, and address my audience in a louder voice. I wanted to get on better with a certain friend of Pete’s, whom he esteemed highly, but I found smug and cold.

To each of these things I could hope to apply time, effort and willpower, and expect to achieve, if not total transformation, at least a degree of improvement.

With casual brutality, illness reminds us of the limits of human will. At each stage of my decline, getting the first inklings of the next phase of horror, I would say to myself, repeatedly, “I will not let this happen.” And it happened, nonetheless. In my body, something was afoot; there had been treachery within the citadel. Quietly an alien force crept in, overwhelming the loyal defenders, taking and holding the positions of strength. My will is left to roam impotently in one small tower, surveying its occupied domain.

How did I end like this? If I had known more, at each stage, of the possibility of the next—oh, I would have exercised all my prudence and efficiency, all my ingenuity, intelligence and cunning in the service simply of preserving what I had. But at each stage, I was an oddity, never to be warned, merely to be funnelled to the next layer of specialists, through an ever-narrowing conduit, until I reached this vanishing point.

Did I reach it via a chain of contingent trivial choices, where at each stage, had I acted slightly differently, the outcome would have been altered? Or was it written in my stars, or in my genes, or in my soul, so that I would have reached it regardless, in any case, through the iron determination of fate? I am not sure which metaphysical system is the more terrifying, or terrible.

This is why I find the novels of Thomas Hardy particularly harrowing as companions in the dark. I have to ration my exposure, and sometimes simply give them
up. He is the novelist par excellence of the small thing with the huge consequences, of the everyday mischance that leads to tragedy, of the almost invisible membrane that divides success and failure, thin as the letter that slides beneath the carpet when Tess slips it under Angel’s door.

“We should do something about the wedding,” says Pete, “to take the pressure off.”

What? Oh yes—the wedding. The struggle for survival over the last few weeks has absorbed so much of my brain that I have nearly forgotten about it. But actually making the decision to cancel—blindingly, obviously necessary as it is—still hurts, the final amputation of a putrefied dream.

More envelope stuffing—this time, only one sheet in each. Pete does most of it. I stuff what I can.