Girl in the Dark (13 page)

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Authors: Anna Lyndsey

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… 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 supplementation 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 …

……………

… It would be really helpful to talk things through with you—is there any possibility of a telephone appointment?

……………

Games to Play in the Dark 4: Word Square

This is a game to play on your own, when you crave violent relief from chaotic, churning thoughts.

Roll out a large white sheet of paper in your mind. Pin it down at each corner, so you cannot see the wriggling underneath. Draw on it a grid, five squares by
five. Place letters into the squares on the grid, so that they form five-letter words, both down the columns and across the rows.

It seems simple, but is very, very hard.

Even with multiple substitutions of letters and complete reversals of strategy, virtually all attempts will end in failure, abandonment, or falling asleep. Yet the possibility of success continues to glimmer on the horizon, a goad to further effort. You find yourself developing theories regarding the most productive approach, at times favouring the “vowel consonant vowel consonant vowel” method (and vice versa on the line underneath); at other times always starting in the top left-hand corner with an S, and bunching consonants together around it. You begin to favour words like STRAP, easily flexed in many different directions (STROP, STRAW, SCRAP) to accommodate disastrous impasses reached in other parts of the grid.

I did it once.

Physics

In the life before, I held a layman’s view of light. I considered it to be a substance much like water: you could bathe in it if you took off your clothes, and when you opened curtains it streamed in. You would always be able to see it with your eyes; if you could not, it was not there.

From such feeble, poetic notions I have been brutally disabused by the physics lesson that has incubated in my skin.

Light is the smiling blue-eyed daughter of a family of ruffians—superficially innocent, but sharing many traits in common with her wilder relations. Gamma rays, X-rays, ultra-violet rays, microwaves and radio waves are the fellow members of her tribe—self-perpetuating electromagnetic disturbances that travel from their point of origin at great speed and across great distances, falling off only gradually in strength. Humans on earth can detect waves from the very edges of the universe, and it is not impossible that other intelligences, in other galaxies, are listening, albeit with several years’ delay, to Radio 4.

The speed of all electromagnetic waves is the same. It is a constant, most commonly referred to as the speed of light, around 300,000 km a second in a vacuum. According to the theory of relativity, it is the maximum speed that is possible, in this universe, with this set of physical laws.

Electromagnetic waves each have a particular frequency
and wavelength; it is these that give each kind of wave its own peculiar properties, the frequency always decreasing as the wavelength gets longer. Gamma rays have the highest frequency (around 10
22
cycles per second) and the shortest wavelength (10
-14
metres). If the human body is exposed to gamma rays, the DNA in its cells is damaged, and cancers will form. X-rays also penetrate the body, but are not harmful in small doses, and can be put to practical use. The wavelengths of microwaves are measurable in centimetres. They are the workhorses of the telecommunications revolution, whizzing between mobile phones, masts, laptops and Wi-Fi transmitters, carrying data as streams of noughts and ones. Radio waves are longer and more languid, their waves measuring tens or hundreds of metres between peaks. They are the frequency of choice for television and broadcasting, snaking across the country bearing collective information and entertainment.

Light sits on the electromagnetic spectrum between X-rays and microwaves, occupying a narrow band. Its wavelengths are measurable in nanometres, one nanometre being one thousand millionths of a metre. It has the unique property among electromagnetic waves of being visible to the human eye. In fact, it stimulates the retina across a rainbow of seven colours, from violet light (with a wavelength of 400 nanometres) to red light (with a wavelength of 760 nanometres). We perceive white light when the different colour wavelengths are all equally present, so that the different colour-sensitive receptors in our eyes are stimulated to the same degree.

The strength of an electromagnetic wave is always 1
divided by the distance from its source. This is a quantity that gradually reduces, but which will never get to zero. These waves do not disappear; they merely become too weak to register on human detection equipment. They pass, to varying degrees, through material barriers, suffer degrees of diminution in strength, and yet, in their essential nature, persist.

This persistence, above all, is what I discovered as I started my journey into the dark. At first I thought that clothes would solve it, that it was a matter of the wearing of long-sleeved, high-necked, long-skirted garments, in opaque material.

But the light—even indoor light—got through.

So I began to wear layers of clothing—lined jackets over long-sleeved T-shirts, full-length double-layered skirts over black leggings and knee-high boots. It was an intriguing, retro, mildly Edwardian look; I found the best fabric for my long skirts was a densely woven silk, and for my fitted jackets, velvet or corduroy.

But it was not enough.

I discovered that fabric protected better if it was not tightly pressed to the layers beneath, so my silk skirts became tiered and full so they did not cling around my legs, and I swapped my leggings for under-trousers, like Victorian pantaloons.

But it was not enough. The light got through. Beneath my complicated finery, I still burned.

Through horrible experiment, I learnt that walls were what I had to wear, that there was no alternative to walls, that walls, from this point on, would be my
perpetual outer garment, my solitary fashion statement, my signature look.

Did I give up too soon? I would gladly have worn a burka in the streets of my small town, if there had been any point. I thought sometimes of armour, or the costume of a Dalek. Would such casings have worked? Perhaps they would not have been too heavy and uncomfortable, the neighbours would have grown accustomed to a shiny, ponderous figure clanking among the hedges and parked cars, no teenage gangs would taunt or knock it over, and after the first YouTube sensation the world would let it make its way in peace.

But by the time I contemplated such extremities, I was worn out by pain, astonished by the incredible level of my own sensitivity, terrified of doing anything to increase it. I could no longer afford to be the subject of my own experiments; I slipped between the walls of my dark room with nothing but relief.

Inside my room, I dress every day in a long-sleeved top and velvet jacket, pull on my pantaloons underneath my silk skirt, slip on socks. I find, by now, that even in darkness
I cannot wear less
(because darkness, of course, is not true darkness, is not a total absence of light).

So there I sit, a sumptuous creature, all set to be the heroine of a novel by Sir Walter Scott, or some other Gothic tale, involving dungeons, dark towers, wicked uncles, imperilled innocence and rustling silks.

In the winter, spring and autumn my layers would be practical enough. In the summer, when the temperature climbs towards 86°F and the sun slams down on
the roof and thunders against the walls, and the air in the sealed-up room grows inexorably hotter, as if the black room were a clay pot in an oven and I the meat inside, and I cannot open a window to let in the smallest breath of new air, because the light would get in too, and I cannot strip off my finery, even though my body is cooking, because if I unwrap my flesh I will burn, even through the sealed-up windows and the stopped-up door—in the summer, I lie on the floor, inert, in the lowest, coolest part of the room, and I sweat, and I sweat, and I sweat, and the heat builds day on day, as the heatwave goes on, with no sign of a break in the weather (I listen to every forecast), and I know what it is like to be in hell.

In such situations, life simplifies. Psychological niceties melt away; I abandon the luxury of higher, complex emotion. Nothing is important except physical survival, and to that end everything can be sacrificed: dignity, hygiene, self-respect, activity, visitors (who would simply add to the heat and fetidity), the occasional indulgence of tears. Ice becomes my friend—I freeze plastic bottles of water and surround my body with them, as though packing ice around a corpse. Small electric fans push over me the heavy, baking air.

Late in the evening, when the lazy sun has finally slid below the horizon and the sky is the deep blue of summer nights, I risk going downstairs for a while. Pete goes into the hot black room, pulls back the curtains, raises the blinds and opens one window. He wheels in an air-conditioning unit, pokes out of the window its long flexible white hose, plugs it in and switches it on.

The temperature display shows the temperature in the room is 77°F. By the time I come back up, the air conditioning dismantled and the room resealed, that has reduced to 70°F, not a huge improvement, but still blissful, for me.

I hold to one certainty: that the earth beneath me is turning, and the season of heat must pass, and I will have several months in which to forget, before my inferno returns.

Feral

During the heatwave, I spend a lot of time on the floor of my room. At the end of the season, as the heat begins to pass, the capacity to think slowly returns to me. I become once more cognisant of my surroundings, and discover something horrible and strange.

I am lying on a thick mat of hair. It has meshed itself into the fibres of the carpet, and can be removed only with difficulty. I have to scrape at it with my fingernails to loosen even a few tangled strands.

The hair is long, wavy and brown. It is my own.

I am not shedding more than the average—we all lose several hairs each day. I am unusual only in the intensity with which I have inhabited a single space, and my inability to see the cumulative effect.

In the end I take a comb and comb my carpet, tearing up handful after handful. There is enough to knit into a garment, or to build nests for several birds.

All this hair makes me feel feral, as though I am a
monster that lives beyond human norms, a creature of musky smells and night-time habits, a beast who hunts and claws and bites, and tears the throats out of its prey.

The Smell of the World

Oh, the smell of the world, to those who are not in it. When I hover on the threshold between the inside and the out—opening or closing a fanlight, or beside an open door at night—the smell fizzes in my nostrils like champagne.

It is a cocktail of subtle and infinite parts, better than the finest blends of master perfumers, a compound of life and decay, of growth, damp and wildness, of heat, dust, leaves and flowers, tarmac, cars, earth, stone and stars.

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