Girl in the Dark (9 page)

The technology that stimulates my brain is crude, utilising only one of my sensory channels (the auditory nerves), and strongly dependent on my store of memories and impressions from the life before. But it nonetheless has some effect, as I move stealthily towards my objective, crawling on my belly through earth and undergrowth, a pistol in my hand and a knife in my belt.

I can, in my darkness, live so many different lives.

Strangely, there is one thing we have in common, these SAS heroes and I: the degree of effort we direct to the management of risk. Before an operation, the SAS prepare meticulously, researching the objective to the best of their ability. They try to ascertain the timing
of guard patrols around the perimeter fence, the position of the exits, the number and the firepower of the enemy. They think through different scenarios, and work out what they will do in each hypothetical situation. Finally, they check and check and recheck their equipment to make sure that it is working, that it can be brought out swiftly, that they know exactly in which pocket each item is stowed. All risks that can be minimised are minimised, before they enter a red sector.

In the life before, I walked up Scottish mountains without a first-aid kit, and, occasionally, on my own. Sometimes I waded small rivers, if I needed to get to the other side. Once, I visited a friend in Biggleswade, and, wanting to reach the continuation of a footpath, we ran hand in hand across the A1—a wild exhilarating dash over four lanes, with cars zooming at us at seventy miles per hour.

But these were calculated risks. I exercised my judgement on each set of circumstances, weighed the possible consequences, and decided that I was much more likely to be all right than not.

Now I have given up such grand gestures. I am in a permanent red sector, and am intensely aware, all the time, of the enormity of the downside risk, the abyss that awaits me, should anything go wrong. I select with great care the chair I will stand on to get down a plate from a high shelf in the kitchen, checking and rechecking the wobbliness of its seat. I clean my teeth twice a day, counting up to the recommended two minutes, and floss with dedication, hoping to forestall decay. For some reason I am always getting into difficulties with
chicken, frequently phoning my mother to pose some variant of the following: “Mum, Pete cooked some chicken on Saturday lunchtime, and then left it out of the fridge until the evening to cool down, and then it was in the fridge for two days—should I eat it?”

“Yes, hello,” she says. “This is the Chicken Advisory Service speaking.” The Advisory Service always gives clear and definitive advice.

At his work, Pete was taught a mantra on a health and safety course: “Think ‘what if,’ not ‘if only,’ ” and I do. Caution infects all my movements now, and all my small decisions in the black and in the gloom.

And I must not get pregnant.

Now there is something that does not worry the SAS.

I have got to know other people in the strange club of the chronically ill. I have friends I talk to on the phone but have never met; friends who are at home during the day, at home, in fact, nearly all of the time. Like me, they had a life before that has been lost; now they wander in the twilight zone where doctors diagnose but cannot cure, and the faint miasma of societal suspicion, never attached to those with cancer, or with heart disease, hangs about them, that somehow it must all be psychosomatic, or that at a deep level they actually want to be ill.

How did we find each other? Bizarrely, the European
Union is mostly responsible: its plan for a compulsory switch to compact fluorescent light bulbs in homes and offices—in fact, everywhere—causes deep concern among people with a range of health conditions who find these bulbs give them painful and severe reactions. (Not everyone with a particular condition is affected this way—nothing so elegant, helpful or uncomplicated—just a subset, in each case.) Trying to find out what is happening, discussing how to influence UK MPs (mostly lovely and supportive) and the European Commission (the equivalent, it will sadly turn out, of smashing your face against granite), and sharing information about possible alternatives that may not be banned, I speak to people with ME and lupus and other conditions, and we put each other in touch with more.

With some, I just talk about light bulbs, and that is the end of the matter. With others, I start off talking about light bulbs, and we end up talking about our shared experience of falling away from the normal, about books and families and politics and ideas; we keep on talking.

My telephone friends speak of pain, debility and nausea, of fatigue and fog in the brain—but in absolute terms, their activities, unfouled by the darkness, are less restricted than my own.

Down the telephone wires my friends give me massive transfusions of life. I come off the phone, every time, more cheerful than before.

Véronique is one telephone friend whom I did know in person in the life before. I met her when she came from France to study for a year in the UK. Always a brilliant girl, in the league tables so favoured by the French, she invariably finished high, receiving the best marks in the country for her baccalaureate and hoping for an elevated position in the national examination which must be taken by all, in France, who wish to work in museums.

Fascinated by objects since her childhood, Véronique specialised in the art of the Pacific Islands. But her curatorial dreams were destroyed by long spells of depression, which then began to alternate with manic crises. She became familiar with the insides of psychiatric institutions, and was eventually diagnosed with bipolar disease.

“This morning I have been to see my shrink,” Véronique says, on the telephone. “The appointment is only fifteen minutes, so one has to talk very fast. He is not ideal, my shrink, but he is the only behaviourist in my city.”

I ask Véronique if there are charities in France that support people with mental health problems.

“There is a charity to support the
relatives
of people with mental health problems,” Véronique says, “to help them cope with the stigma.” She often talks about her dilemma, as she tries to meet new people, over what she
should tell them about her condition. Merely to admit that she is not working can provoke a surprising degree of moral condemnation; if she then reveals the reason, the reactions range from horrified withdrawal to the advocacy of New Age therapies, instructions to pull herself together, because everyone has mood swings, or a recommendation to submit herself to the Roman Catholic Church. Friendly, polite and keen to please, Véronique finds it difficult to give her interlocutors a suitably robust response.

Véronique attends various adult education classes, “… but they are very female—the only people I meet are elderly ladies!”

“What classes are you going to?” I ask.

“Ceramics, life-drawing,” says Véronique, “and Tai Chi.”

“Perhaps you should try something with more appeal to men. What about a walking group?”

“I have joined a walking group, but it also consists only of ladies.”

Véronique and I speculate regarding what French men might be doing, as they certainly are not attending adult education classes.

Eventually Véronique solves the problem by joining an Internet group called
“On va sortir,”
where people link up to go to concerts, exhibitions and so on.

One day she announces that she has met a young man called Nicolas, a counsellor and therapist. Relationship counselling is one of his specialities.

“He has classic Alsatian good looks,” says Véronique, who, as a native of Alsace, frequently uses this adjective.
I really should be used to it by now, but I cannot help myself: every time Véronique says it, large brown dogs with pointed ears lope across the display screen of my mind.

“For our third date,” says Véronique, “he asked me to go with him to a sauna in Germany. There was a sign on the wall telling people not to talk, so we sat on our towels in a huge room, in silence, surrounded by naked Germans. It was spooky.”

“So … were you naked as well?” I ask faintly, feeling very buttoned-up and English.

“Oh yes, but that’s quite normal. In French saunas everyone is naked, but at least one is able to chat.”

It is for the joy of such unexpected vignettes that I am indebted to Véronique.

It soon becomes clear that Nicolas is more interested in analysing their relationship than in having it; specifically he is interested in improving Véronique so that she becomes a more suitable partner for him. Even eager-to-please Véronique realises this is rather one-sided, and they part.

Véronique’s English is very good, but every so often she struggles to find an exact translation, or I use an English idiom that she does not understand. We have great fun working out the French equivalents for “white lies” (
pieux mensonges
), “public spending cuts” (
la rigueur
), “champagne socialist” (
la gauche caviar
) and many other fine expressions.

Tom was a partner in an IT company, until, in his late thirties, he became ill, in a way similar to, but not as severe as, my own. No longer able to function in modern office environments—although never, luckily, affected by daylight itself—he has had to find another, home-based life.

His partners in the company buy him out and he decides to use some of the money to build an eco-house for himself, his wife and three children. It will be extremely energy-efficient, and its running costs will be exceptionally low.

I hear about the progress of the house. “The difficult thing,” says Tom, “is making the whole place properly airtight, so that you retain the maximum amount of heat. I’m trying to get hold of special seals for the edges of the windows, and for the joins between the walls and the floor.”

“If it’s completely airtight,” I ask, “what about ventilation?”

“There’s a single air inlet with a small electric pump. In the summer you can cool the air coming in and in winter you can heat it, if you need to, but it’s amazing how much heat human bodies generate, if you keep it in and don’t let it escape.”

“If the pump broke, would you suffocate?” I ask with interest, thinking of a possible plot for an eco-whodunnit.

“It would take five to six days,” says Tom, who always works things like this out. “So you’d probably start to notice before you finally expired. I’ve installed carbon dioxide monitors, just in case.”

Most of the windows in the house face south, to maximise solar gain. A system of blinds prevents overheating. Shade creepers grow up over the porch in summer, and die back in winter, when sunlight is scarce. I have never seen the house, but I have an image of it in my mind as a live thing, a reptile basking in the sun, sucking into its belly every life-giving ray.

Tom is not a fan of conventional wisdom. If he wants to know about something, he researches it himself. He rigs up a computer in an old barn, so that the image that would appear on the monitor is projected on a large scale on to a white wall, and he can sit at a keyboard far enough away from it to avoid discomfort. He thinks the Internet will result in social change on a scale that has scarcely yet been imagined, bringing people together so they can slip out from under the grasp of institutions and governments. People will manage their health without doctors, teach themselves things without schools, share and analyse data to find patterns that would never emerge in traditional scientific trials.

I am stimulated by these new ideas, exhilarated by Tom’s optimistic view of the future, encouraged by the chance it gives for people written off by the system to work out their own salvation. But I’m not completely convinced. I mistrust anything that claims to transcend, once and for all, human nature, history and power relations, and offer unmixed liberation. “Don’t you think,”
I ask him, “that all this cyber-utopianism, or whatever, could become—well, a bit ideological?”

He doesn’t, really. He simply tells me about yet more startling developments in computing and on the Web, and also about what futurologists think will happen next, as computers become smaller and smaller and more and more powerful. Eventually a person will be able to download their entire consciousness, and become an eternal, inorganic intelligence, removing the need for a body, and all the messy fallibility of flesh.

My mother is coming to visit.

The first sign is the sound of a taxi drawing up. Then there is a banging of car doors, a rustle of bags and a loud cheerful voice in the street outside.

There is more banging and stomping as she unlocks the front door and comes inside.

“Hello-o?” she calls. “Now stay in the black, don’t get overexposed.”

I come downstairs. In the hall, my mother is divesting herself of a black metallic walking stick, a backpack, a shoulder bag, a carrier bag, a purple coat and a turquoise hat and scarf.

“I’ve brought various things,” she says, delving into her bags. “I went into Sainsbury’s opposite the station and bought you some yellow chrysanthemums. You ought to be able to see those in the gloom.” She comes into the living room and gives a yell as she walks into
the coffee table. (In the dim light, visitors entering from the bright world outside go temporarily blind.)

“I’ll just stand here and give my eyes time to adjust,” my mother says, handing me a lumpy package. She has brought some raw beets, which she is going to make into borscht for lunch. (Raw beets, strangely, are a metropolitan luxury, very difficult to get hold of in my part of Hampshire.) She has also brought a new mug with a nice strawberry pattern, and some posh jam as a present for Pete, who is a connoisseur of conserves.

My mother sits on the tall chair in the kitchen, chopping up beetroot, while I make cups of tea. She holds forth on: