by Anna Lyndsey
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.
I wonder what self-help advice is given to those under sentence of death, as they await the outcome of their last appeals. Would an extreme proponent of positive thinking recommend not even contemplating the possibility of failure in case this opens the door to the reality? I feel I have to give some time to mental trial runs, so that the shock, if it must come, will be less catastrophic, because I have already been through it, in my mind.
Eventually I receive an email saying that the communications manager has left the project, and that any contact should now be with the project director.
I engage with the project director. Sensibly, he asks if I can obtain a letter from my consultant about the white light problem, which I do. After several months I have a general reassurance from the project director that they won’t install street lights “in the immediate vicinity of my home” that will be “injurious to my health.”
I know from my previous life how slippery words can be. I know that what looks, on first reading, like a commitment, can actually, when it comes to the crunch, be nothing of the sort. It’s no reflection on the integrity of the individuals involved; they are simply part of a system addicted to wiggle room. But the net result of my ten years in Whitehall is I’m wary of anyone or anything official. So I’m concerned to get detailed specifics on the council’s plans, and in a form more formal than an email.
After another few months of phone calls and emails, I learn that the project director has left the project. I ask my local councillor again for help. After a few weeks, I am contacted by a senior engineer, who comes to visit me, with a map.
He says white fluorescent lighting is not suitable everywhere anyway, and he would like me to indicate where I walk on the map, so that a special area of sodium lamps can be installed (they still want to replace the lamps themselves), rather like a nature reserve for an exotic, endangered species. He can’t guarantee everything I ask for, but will aim for some of it.
At these signs of intelligence and humanity, I almost collapse with relief. I want to embrace this grey-haired, soft-spoken man, my low-key, geeky saviour.
I submit my annotated map, but then, for several months, hear nothing definite except that they are very busy sorting out the contract. I wonder if the sensible engineer has been overruled by some other, less amenable, part of the bureaucracy. I’m worried that I’m still relying on personal assurances from a project whose implementation dates are growing closer, and whose staff have a marked tendency to leave.
It’s two years since the consultation exercise. The long period of uncertainty, in tandem with the constant effort to overcome my natural instincts and keep hassling, has slowly drained me. I have read books on how to manage stress, have learned how to breathe through my feet, to breathe in for four and out for nine, to breathe so that my belly rises and falls, to meditate by focusing
on the breath. But I still feel like crumpled paper. I decide it’s time to bring things to a head.
I email the local law firms, and pick the one which gives the sole intelligent response. A fierce and rigorous partner comes to see me, asks a lot of questions and takes away a lot of papers. She drafts a letter which makes references to the Disability Discrimination Act, the Disability Equality Duty, and the Human Rights Act.
But in the end, the letter is not sent. I start putting the solicitor on the copy list of my emails and mention I have consulted one. A plan of my area arrives from the council. It shows the position, reference number and type of every street light. The streets and footpaths around my house are edged with a glorious golden glow. The accompanying email says, furthermore, that the rollout of new lamps in my neighbourhood will be scheduled at the end of the implementation period, so it won’t happen for a couple of years, at least.
I am dizzy with relief. I allow myself, even, some modest jubilation. But my past training still does not desert me. I put all the papers in a file, tell the solicitor to retain my set, and wait to see if promises will be kept.
Wedding
During a long and hopeful period of remission in 2007, Pete and I decide to have another go at a wedding. With a light-sensitive bride, the whole event has to be reconfigured. We consult the sunset times in my diary and find that on 6 December the sun will set at 15:57. So we decide we will get married on that day, at four o’clock.
It is no longer feasible to hold the ceremony and reception in a hotel. I need to be able to control the amount and type of lighting in my environment, and to retreat periodically to my lair. Pete investigates the registry office in town; it is a nightmare of ferocious strip lights and large plate glass windows.
But the church where we were going to have a blessing is still suitable. It is very old, and the village that once surrounded it moved in the Middle Ages because of plague. So it now stands in the middle of fields, with few surrounding lights. Inside, it is lit by a series of sodium spots, high up in the beams of the roof.
The church is one to which Pete has belonged for many years. When he first arrived in the area, he investigated the surrounding Church of England establishments to find one in which he would feel at home—in the expression used by those in the know, neither too low down nor too high up the candle. He eschewed the church nearest to his house, a barn of glass and yellow brick and fluorescent lighting, where the words of praise songs descend from the ceiling on screens and the congregation wave their arms unencumbered by hymn books.
My own religious background is more complex. My mother is Jewish (Reform rather than Orthodox); my father, originally a Scottish Presbyterian, passed through both Marxist and New Age phases before converting to Catholicism two years before his death. Growing up, I never felt fully immersed in either camp, and although occasionally I envied the coherent community life of my cousins, I also enjoyed being able to step back, observe from outside, and develop my own perspective. I had never envisaged having a church wedding, but the logic of our situation is becoming inescapable. If we want to get married, it looks like we are going to have to do it in the church. It takes me a while to come to terms with this, but finally, I admit it to Pete. “But will they have me?” I wonder. We write to the vicar explaining the position, and I am pleased when I find out that the Church of England, as an established church, considers that it has the care of all souls within the land, including mine, and will marry me even though I am not a Christian. I am even allowed to omit “through Jesus Christ our Lord” when I say my vows. It is all most sensible and civilised.
I have a wedding dress. It is bluebell-blue satin, with embroidered flowers climbing up from the hem. But wearing the dress alone is not an option any more. The dressmaker sews a fitted jacket, in matching material, and well lined, for me to wear over the top.
I also need a hat. I decide to work on the principle that if one has to wear a hat to one’s own wedding, it might as well be a humdinger. I find in the Yellow Pages a character called “The Mad Hatter,” who is prepared to come to the house. Together we concoct a millinerial event—bluebell blue, with an enormous brim, and a vast silk flower.
It is a splendid creation. The only disadvantage, as Pete and I will discover on the day, is that the brim is so wide that it discourages intimacy. We can’t stand too close together for the wedding pictures, or the groom gets hit in the face.
The reception is to be reduced in size and relocated to the house. The house is not a large one, so we plan to get extra floor space by hiring a marquee which will attach on to the back of the conservatory, and fill up nearly the whole garden. The guests will be kept warm by gas heaters and energetic Scottish dancing. There will be a bar in the bay window at the front end of the living room, and food set out on tables in the conservatory, for guests to help themselves.
Five weeks before the wedding I step on a snake.
It is a long one.
I have had months of slow but uninterrupted improvement. I have reached f22 on my light meter—meaning that I can go out about an hour before sunset, and stay out for the same time after dawn.
I have begun to teach the piano to local children, putting into practice, at last, what I learnt on my course. There seems to be a demand—soon I have eleven pupils, and am planning to hold an informal concert for parents and friends, to be followed by a tea party involving lots of cake.
The teaching is my undoing. My pupils come in the after-school slot, two or three most weekdays. I have been used to teaching the first two by natural daylight, and only putting the piano lamp on for the third.
At the end of October the clocks go back and the evenings become darker. I teach three pupils in succession under the glare of the piano lamp.
It is too much.
For the whole of the following night I feel as though cheese graters are being slowly pulled across my body. The next day, I can hardly leave my dark room.
TWO WEEKS BEFORE the wedding, my state has not shown much improvement. Pete and I debate what to do—to cancel the wedding for a second time, or to plough on regardless.
In the end we decide to carry on. Standing in the living room I make a statement to Pete, looking into his eyes, holding on to his elbows so that he cannot turn away. I tell him that if, subsequent to the wedding, my condition does not improve, I will understand if he decides to divorce me.
“OK,” he replies. “But let’s hope it doesn’t come to that.”
We wrap our arms around each other and kiss for a long time.
This is my true wedding vow, my dark vow, the one that will, if I have to keep it, shred my heart. The promises I will make on the day are easy and obvious; with my dark vow I make obeisance to the forces that shift implacably within the black pit of life, that twist and break the finest, strongest things. In ninety-nine out of a hundred possible worlds, we are ideal companions; this may be the one in which we’re not.
The final two weeks pass in some sort of surrealist nightmare. I spend as much time as possible in the dark, trying to stabilise my skin, popping up to take delivery of my hat, try on my jacket, speak on the phone about the cake (I can hardly remember what it is supposed to look like). All sorts of things that I had once thought important fall by the wayside. I am given a silly haircut by a visiting hairdresser, who refuses to come back and fix it; I can’t cope with the hassle of finding anybody else.
The day before the wedding, I sit upstairs in my room while a rumpus goes on underneath. Men charge in and out installing the marquee, demanding that bits be cut off various trees and shrubs so that it will fit. Friends arrive to help shift furniture. The flower lady turns up in a car full of greenery and blossoms, blue, pink and white, and starts installing her arrangements. Pete comes in to give me periodic reports and show me photographs of the more interesting developments. In between these, I listen to my talking book. It’s Bravo Two Zero.
And it’s Bravo Two Zero the next day as well. I am glad, because the st
ory of an SAS patrol stuck behind enemy lines in the first Gulf War is at least gripping and true. It helps me to forget that this is my wedding day, that it has not turned out as I had expected, that I do not know what will happen in the afternoon, when I put on my outfit and go to the church, whether I will be able to stand it, even with most of the lights off, how much pain there is to come.
During the morning of my wedding day, the narrator is captured by Iraqi soldiers. He is beaten up, taken for interrogation, beaten up, displayed to an angry mob, convinced he is about to be shot or torn to pieces, beaten up again.
Suddenly it’s three o’clock. I turn off the torture scenes. Hurriedly, I put on my dress and jacket. I take several beta carotene tablets, which can sometimes take the edge off my reactions. In the unlit bathroom, peering into the mirror at my dim reflection, I hazard a small amount of make-up, and put on my hat. When I come downstairs, Pete opens the front door of the house and the back door of the car. A few desultory raindrops spatter the close from a mottled grey sky, but on the horizon, gaps in the cloud reveal pale primrose patches of light. I dash across the two-metre gap and dive inside my puppy cage, while trying to preserve the upstandingness of my silk flower.
“Right,” says Pete. “Are you in?”
I thrash about, fastening my seatbelt, and shifting the recalcitrant folds of felt so that they press less heavily on my head, but still provide protection around the legs and feet.
“I’m ready,” I say. “I hope it’s not going to pour down. Let’s go for it!”
He starts up the engine, and we move off into the uncertain December dusk.
IN THE END, adrenaline and absurdity get me through. My memories are an agglomeration of intense, mad, joyful fragments, like a web of fairy lights: walking up the aisle with Pete to “Wachet auf” by Bach; the weird lighting in the church, where most of the central lights are off, but the ones at the sides are on, and there are huge white candles at the altar, and smaller ones in stone niches and on windowsills; nearly fainting when I come to say my vows, suddenly overwhelmed by the realisation that we’ve made it this far; at the party afterwards, whirling triumphantly up and down the marquee, flung from partner to partner, as we collectively work out, finally, how to “strip the willow”; my stepmother, on the waiting list for a hip operation, throwing aside her walking sticks and joining in; a young girl on the trampoline in the children’s corner, daughter of one of Pete’s colleagues, bouncing, bouncing, blonde hair flying; the sudden onset, halfway through, of anxiety about loo rolls (there are seventy people in the house), and Pam driving valiantly to Tesco to bring back an enormous multipack.
