Girl in the Dark Read online

  “You OK, darling?” he asks, coming in and sitting on the bed.

  I throw myself on to him and bury my face in his chest. “I know what it is,” I say. “I’ve worked it out. Oh Pete—it’s the light.”

  “You mean—on the rest of you?”

  “Yes. I don’t know what’s happened, but somehow, things have reversed themselves. My face has got better—but the rest of me—the sensitivity—it’s gone all over. Oh Pete, what am I going to do?”

  “My dear,” he says, hugging me tightly to him, “my poor dear.” Then, after a while: “Well, at least we know now. That has to be a step forward. Would it be an idea to close these curtains?”

  I snort with damp laughter. “Er … yes, it probably would.”

  He draws a veil across the setting sun, which drops luxuriously into a foamy pink bath of cloud, its work complete.

  Eclipse

  Once, I witnessed a total solar eclipse. It was the one that took place on 11 August 1999, and it was visible across parts of south-west England and northern France, if the sky was not cloudy at the critical point.

  I had a friend with a connection to the Royal Astronomical Society. The Society organised a special trip to watch the eclipse in the Channel Islands, open to members, families and hangers-on.

  Four of us hung on. We flew to Guernsey and spent three nights in a hotel beneath the airport flight path; the roar of planes taking off and landing started in the early hours and continued until late at night.

  On the morning of the day itself, we rose well before dawn and caught a bus to the port, where a huge white ship, specially chartered, loomed above the dock. Many astronomers were already on board, carrying impressive collections of telescopic and photographic equipment. Children ran about the decks in a state of high excitement. The ship nosed out into a choppy sea to cross to the island of Alderney, which lies on its own about twenty miles north-east of Guernsey, not far away from France.

  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.

  June 2006

  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.

  SOME 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.

  Vanishing Point

  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.

  AFTER 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.

  Autonomy

  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.

  Correspondence 1

  “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.

  14 July 2006

  … Over the last few weeks Anna’s health has deteriorated badly and she has become extremely sensitive to light. So, very reluctantly, we have decided to postpone our wedding. Thank you for all your donations to our charities. Our apologies go to everyone who has already booked travel or accommodation for 9 September. We still hope to have a wedding some time in the future and will hope to see you there …

  Correspondence 2

  … When I first saw Dr. Ocelot in April, only the patches of dermatitis on my face were photosensitive. Now it appears that the whole of my body is reacting …

  What provision is made for people who are too ill to attend the London clinic? I am not sure how to proceed and would welcome some assistance …

  … I am sorry to hear that things have got so much worse with your health. This is a very difficult situation and I am sorry that you find yourself in this situation. When patients are unable to come to see us for these reasons, then the local doctors take up their role again …

  … Thank you for phoning last Thursday. You explained that while 90 per cent of photosensitivity cases can now be linked to a specific clinical condition, 10 per cent remain which cannot be, in the present state of knowledge …

  I said that I would send you a paper my fiancé found on the Internet which describes a case of photosensitivity which exactly matches what has happened to me:

  1. Initial symptoms were “screen dermatitis,” i.e., redness and burning on the face when using a VDU.

  2. Generalised all-over light sensitivity set in after one intense but reasonably short exposure (in my case going for a run earlier than usual on a bright May evening).

  3. Symptoms of the generalised light sensitivity (in contrast to the facial “screen dermatitis” symptoms) are a severe burning sensation, but with no rash or visible sign.

  … Are there any aids which one can take for living in the dark? Are there supplements which one should take to make up for lack of sunlight?…

  … Many thanks for the copy of the article. We and other colleagues have certainly seen patients with symptoms like yours and like those of the patient in the article. At the moment the cause of the condition is unknown. It would certainly seem reasonable to ask your GP for some vitamin D supplementati
on since sunlight does help to produce vitamin D in the skin, and this would prevent you becoming deficient in vitamin D …

  I am sorry not to give more specific and helpful advice, but this really reflects the current lack of understanding of the condition …

  … If your condition improves sufficiently to allow travel to London, please do inform us so we can arrange an appointment …

  … We have had to cancel our wedding because of my deteriorated health. As you know when we decided to get married and took out wedding insurance the only part of me affected with light sensitivity was my face. I had no idea at that time that the condition could evolve and spread to the extent that it has …

  … The points you make in terms of the insurance for the wedding are entirely reasonable and … I will explain this to the insurance company if they contact me …

  … As far as collecting knowledge and understanding of your condition are concerned things are still at the early observational stage …

  … I am now aware of three other people in England who have developed my form of severe photosensitivity and are living in darkness. There is a real issue of access to services. It would be useful to know what research is being carried out or planned into this particularly disabling form of photosensitivity …

  … If I hear of specific research projects occurring in this area I will keep you posted. Obviously, it is a disease which is particularly difficult in terms of research …

  … The situation I am in seems a bit bonkers in that I am excluded from treatment unless I can become “well” enough to attend your clinic! I would be willing to pay for a private telephone consultation …