Girl in the Dark (23 page)

I could headbutt her, but I do not. Instead, overwhelmed by glorious, transcendent absurdity, I burst out laughing, and keep laughing as I escort her to the door.

I have a lot of tests. They are recommended by private doctors and other practitioners and carried out by
private laboratories. I get to know the home-visiting phlebotomist, a cheery lady who operates under the title “The Scottish Vampire,” and who tightens around my arm a strap decorated with Dracula cartoons. Pete takes packages containing a range of bodily fluids to the post office; he gradually becomes inured to filling out embarrassing declarations about their contents.

The upshot of all these tests is that vast swathes of me (amazingly, given how I have been living) are working well. The exceptions are my metabolism of essential fatty acids, which is “deranged,” my methylation cycle (something to do with the liver) and my adrenal glands, which are so useless at producing cortisol that by rights I ought to be clinically dead.

But are these anomalies causes or consequences of my sensitivity to light? And will the huge lists of supplements recommended to treat them actually be absorbed and tolerated by my system? I find I do feel somewhat better if I take stuff to support my adrenal glands, and that eating foods rich in essential fatty acids like pumpkin seeds, flax seeds and grass-fed steak has a noticeable soothing effect on the skin, but the vitamins recommended to promote methylation, and most oily supplements, make things worse.

One private doctor, impressed by my poor adrenal function, recommends, in addition to supplements, a low-dose steroid, hydrocortisone, and for a couple of months I experience significant improvement. Then, on
upping the dose as instructed, the improvement goes into sharp and nasty reverse, and I am back mostly in the black, not venturing beyond the night-time garden. I want to stop taking the things but of course I cannot, now being dependent; any reduction will have to be done very slowly and carefully, with excitingly weird side effects, and no guarantee of success.

So I have some peripheral pieces for my jigsaw, but in the centre, there is still empty space.

“My adult student Elizabeth,” says my mother, “had a hole in her retina, and was on a waiting list for an operation, and she visualised the hole closing up every day for three months, and when she went in for the operation, they could no longer find the hole.”

“Hmmm,” I say, “I suppose it’s worth a go. What should I be visualising, do you think?”

“Er … what about—the curtain gradually opening?”

“But then—if the technique actually works—all that might happen is the curtain might gradually open, and that would be no use at all.”

“Good point.”

In the end I decide to visualise putting on an all-over protective body suit, like a second skin, and do this religiously every morning.

Not much happens.

My energy egg is about three centimetres high. It is indeed egg-shaped, made of polished white stone, cool to the touch. According to the instructions, it must be kept within one centimetre of the body, so I carry it about in my pocket for several months.

In the end, I conclude that I feel better without it, as it contributes to a slight lopsided tendency, which is not good for my back.

In the absence of anyone knowing what to do about my condition, the only way forward is to experiment. But being the sole subject of my own experiments is frustrating and inefficient; every experiment has the
potential to make me worse as well as better, and given the general fluctuation it can be hard to disentangle the results.

I dream of having a library of clones—six versions of me, made specially meek and compliant, kept boxed up in a cupboard when not in use, and brought out to eat strange pills and trial peculiar devices, as required.

This is not an uncommon fantasy, I find, among the chronically ill.

Goodness it is boring having to keep thinking about my health. Every so often I become completely fed up with the whole business and have to take a break, simply to be.

O
N THE WHOLE
, Pete supports my experiments, and tolerates the more outlandish ones. Kinesiology, however, is where he draws the line. Part of the treatment involves attempting gradually to desensitise the body to a range of substances, in order to reduce its total allergic load. After a session in which I am desensitised to, for example, sugars, I am instructed to keep at least four feet away from any items which contain them for the next twenty-five hours. To assist me, the kinesiologist helpfully places the biscuits in a cupboard, the bread in a corner under the boiler and the fruit bowl in the office upstairs.

When Pete comes in from work he goes quietly berserk.

“That woman’s been here, hasn’t she?” he growls, prowling round the kitchen. “It’s bloody bananas in the washing machine again. And where’s the bread? Can you give me a clue? I want to make some toast.”

Terror comes at me out of a clear sky, slamming me into the ground.

Half a page in a local council magazine. Money available under the Private Finance Initiative to replace street lights in the county more than fifteen years old. A consultation exercise to be held, so that people may make their views known. In place of traditional sodium lamps, the council is considering bright white fluorescent “daylight” lighting.

If they install white lights, I will never be able to leave the house.

If they install white lights behind my back fence, I will never be able to use my garden.

At first, I am too shocked to do anything, too shocked, even, to work out what action I should take. The impending beams transfix me; I can only sit and stare at my approaching doom.

But after a couple of days, my mental paralysis starts to abate. Stuck cogs shift, small flickerings of electric pulses dart across neural circuits. Avenues that might be
worth exploring occur to me; an occasional sentence for a possible letter drafts itself randomly in my head.

I want to know the council’s freedom of manoeuvre. Is it their choice to install white lights, or are they being directed by a higher power? I write to the Department of Transport, and receive a reply saying that the EU Street Lighting Directive (of course! How could I have possibly imagined that street lighting might be a matter of national sovereignty?) requires only that old-fashioned low-pressure sodium lamps be changed, when they come to be replaced, to more energy-efficient high-pressure sodium lamps, and does not mandate the move to white fluorescent. Local councils should take account of local factors, says the DoT.

I write a response to the consultation. I receive a letter from the council. It says, “Thank you for highlighting your concerns about the impact of white light on people with light-sensitivity conditions. I have received many helpful and constructive ideas for future street-lighting provision. Please be assured that these will all be considered before any firm decision is taken.”

The letter, with its careful, non-committal wording, makes me positively nostalgic. “Highlighting your concerns about the impact of” rather than “explaining the difficulties caused by” is quite masterly—in other words, you say there’s a problem, we don’t have to believe you. I am all too familiar with what is going on—it’s what, in a slightly different context, I used to do for a living when I walked the corridors of power, a handmaiden of the elect. I wrote “lines to take” to help ministers
answer difficult questions. And I formulated standard paragraphs for use by correspondence units in replying to letters from the public, such as my own.

Some time after the end of the council’s consultation exercise, I have heard nothing about the outcome, and am getting jumpy. I know too well the desire of the bureaucrat for things to progress smoothly. I, if I had received my own letter, would have simply placed it in a sort of holding pen for the peculiar, and pressed on regardless, unless something more dramatic occurred.

I write to my local councillor, for help in finding out what is going on. The councillor acts fast and constructively, contacting the street lighting project and asking them to talk to me. They send, in the first instance, a communications manager. She is an enthusiastic, well-dressed young lady, who tells me how wonderful the new street lights will be. They’ll be just like daylight, so colours will look the same as in sunshine, and the police will be more easily able to identify a thug wearing, for example, a purple hoodie. They will be angled downwards, rather than outwards, so there will be less light pollution, which will be better for astronomers. They will be remote-controlled, so that the council can dim them after midnight, in genteel neighbourhoods where crime is low.

I listen to all of this, then explain patiently that, unfortunately, these features do not address my problem, which is, if these lamps are installed in my area, I will no longer be able to leave the house. I ask if a final decision in favour of these lamps has been made. Sheepishly, the communications manager admits that it has.

I suspected as much. Yet to have it confirmed is as if this pleasant, smartly suited young lady has taken, from her chic leather bag, a slim pistol, and, as we sit opposite each other in armchairs in my own living room, has shot me in the guts.

I know I must come back fighting. Luckily, I’ve done my homework. I have obtained a guide to the Disability Discrimination Act, which makes clear that it covers local authorities and public spaces, of which the streets would seem to be a prime example. Service providers are required to make reasonable adjustments to enable a disabled person to have access. I say that I’m not asking for access to the whole of the county or even my own town—but simply for an area around my house to be left with sodium street lights, so that I can continue to have a daily walk. I show the lady spectrum diagrams of different types of lighting, including a graph of the make-up of daylight itself. I explain that light at the blue end of the spectrum is higher frequency, and therefore more damaging to light-sensitive people, and that white “daylight” lighting contains a much greater proportion of these more energetic, “bluer” wavelengths.

The lady listens to my theory lesson. She questions how I can know the new lamps will be a problem, when they haven’t been installed yet. I do, sadly, know this—a couple have been put up at the end of one of the closes I visit in my daily dusk walk, to shed extra light on a footpath. I walked past them as an experiment, buoyed by irrational hope; the following night was agony.

The communications manager says she will pass on
the content of our conversation, but can make no commitments. She leaves.

The next few months are horrible. Hearing nothing from the project, I have to do what I hate, having been brought up to show consideration for others, and not to make a fuss. I have to hassle people, phone up, leave messages, copy emails to my councillor. Every time my assistant logs on to my emails, my heart pounds, in case, lurking in my inbox, is a communication affecting my fate. When there’s once again nothing, I feel a surge of guilty relief. But later, I am in a quandary again, trying to decide whether I should make another phone call, or wait another week. Am I jeopardising my case by over-prosecution, or is there some invisible clock on which my time is ticking away?

When I psych myself up to telephone, I am trembling, and afterwards must take several deep breaths and lie down.

My interlocutors know nothing of all this. My emails are always polite and professional. On the telephone I sound friendly and hyper-rational, but not as if I am going to go away. I know I cannot afford, even once, to lose control; to allow the emotions roiling below the surface to bubble up would risk being labelled as a madwoman, a neurotic, a person no longer to be listened to but to be
handled,
a person who has ceased to be an equal.

The dilemma must be familiar to everyone who finds, suddenly, by some weird sleight of circumstance, that they must engage with the State. The State is
the power that can do unto you, without asking your leave, the power that can grant or withhold, the power whose favour can only ever be solicited, and never be demanded.

They will not believe there is a problem, if you allow too little distress to show. Allow too much, and you’re officially a nutter.

My own father, a mild and considerate cello player, went several times to his doctor over a period of years, because he had headaches that were becoming more frequent, and growing difficulty moving the fingers of his left hand. The doctor told him, each time, that he was suffering from stress. He collapsed on a concert tour of Germany, walking along a footpath beside the Rhine, with a brain tumour that had grown large enough to paralyse him down the left side. Sixteen months later he was dead.

I pace the streets of my neighbourhood on my dusk walks. I breathe in the smell of damp gardens, old leaves, seasonal blossoms, the vapour of hot days, the scent of the wind. I watch the daily show of the sunset upon the screen of the sky as it creates its never-repeated pattern of cloud and dying light. I try to tell myself: enjoy it now, enjoy it today, don’t think about a future when this is closed to you, when if you want to walk you’ll be dependent on others, boxed up and transported to somewhere unlit and out of the way.