Girl in the Dark (15 page)

I am impressed by Jean-Dominique Bauby. I think about him a lot. I wonder whether, to enjoy as he does the pleasure of sunsets, the trips out of the hospital to the beach, the drawings and cards from his friends and his children that decorate his room, the companionship of the TV; whether, to gain, as it were, the benefits of light, I would trade the movement of my body.

The pleasures of a body without light are not glamorous but, nonetheless, not negligible. I can go to the lavatory when I please. I can eat when I choose and, within the limits of what has been procured for me, the food of my choice. I can savour my food. I can flex my limbs, within the confines of my dark box. I can talk freely to visitors, missing only the nuances of gesture and expression.

In common, Bauby and I share the hunger for visits, the long hours to be got through alone.

Would Bauby choose to swap fates with me, or I with Bauby? Perhaps it is as well that life does not give us such choices. We would spend hopeless hours with our pens poised above the questionnaire, unable to decide in which box to make our mark.

The worst part of the book, for me, is the afterword, because that is when I find out that Jean-Dominique Bauby is dead; that he died, in fact, in 1997, two years and a few months after his stroke.

I am immeasurably distressed. I feel his death strongly, on behalf of all who lead impossible lives. It is too neat an ending, too easy a let-out for those who read his story, providing convenient closure, when, actually, for many there is none—just year after year of continuance, with the years blurring into each other, looping back on themselves, becoming hopelessly entangled in the mind, because the memorable events are so few and widely spaced upon the grey ropes of time.

I am in the bedroom of the flat in London where I used to live. It is a lovely room, facing south, with two large windows through which I can look down into the quiet street or up into suburban sky. In my dream, as in my memories, it is snug and warm, with sunbeams patterning the bristly brown carpet and dust particles dancing in iridescent swarms.

I sit on my bed with its crisp white sheets, and suddenly it is evening, the curtains are closed, and the room has become cold. Pete is there, with his head turned away so that I see only his profile. Someone else is also in the room, a woman in a short skirt and knee-high boots, with long straight brown hair cut across in a fringe. (I think the boots are unwise, because the woman has incredibly thin legs.) She is wandering about looking at my things, opening drawers, making comments on pictures, taking books off the shelves.

Pete, still not looking at me, is telling me that he is leaving me, that he regrets having to do it, but he knows I will understand.

I feel as though my heart, my lungs, my liver and my bowels have been gouged from the front of my body. Agony and emptiness invade me. I say nothing, cannot, in fact, say anything, just gaze at Pete’s craggy profile and at his beautiful mouth as he speaks sensible, reasonable words, with which I can find no fault and make no argument. I am in shock, but I am not surprised. “So it’s happened,” I think to myself. “What shall I do now?”

And I wake in the darkness, believing the dream, and lie in bed rigid and panting, but with my mind already beginning to work, to chew over the remnants of my world.

I do not know how long I lie there, mourning and making plans. At last, tiny things start to burrow into my consciousness, carrying the pricklings of doubt. I hear the central heating come on with its characteristic hammer and grunt. I hear the bathroom door open and close, and the click of a light switch.

“Was I really in London?” I wonder, still half inside my dream. “In the light, in my flat? Surely that’s impossible—that flat was sold a long time ago. And if I wasn’t there, did any of it happen at all?”

And I remember how, years ago, a couple of months before I sat my A levels, I had a similar practice dream. In total, compelling detail, I dreamt that I received my results, and got three Ds, which made my planned course and university place impossible. I awoke, desperately
disappointed and ashamed, and lay in bed for at least an hour, trying to work out what to do. I weighed up the pros and cons of resits, and wondered if I should stop trying to be an academic, and go to music college instead. I pushed my mind back to the exams themselves, hoping for a clue as to what had gone wrong—and found I had absolutely no memory of taking them.

Then I looked out of my window at soft spring drizzle falling on small-leaved trees, and my heart leapt as I realised that the future was still a clean page, its words yet to be written. But I was always grateful for the dream. It had given me a chance to practise my emotions, to experience in advance what, if the worst happened, they would be.

In the pool of my mind, I find strange thoughts swimming. They flick across the corners of my inner eye, half-seen, yet distinct enough to allow identification.

Three separate species tenant these murky depths. There is the soft grey fish with scales of shadows, whose name, I find, is
envying the dead.
Each time I hear about a death, no matter whose—a relative, acquaintance, politician or some long-forgotten star—I feel within that sudden flash, that twist and plunge of jealousy. For the dead have already found their end, have found their turning from that long straight road; their story is complete, the last words written—the future can no longer terrify. They are enclosed both ends by time, wrapped
in its gentle wadding, stored away as precious things. I still hurtle forwards on the cutting edge of chaos, into who knows what desolate and unexplored frontiers.

The second species is pale in colour; it drifts through the water like a reflection of the moon. Its name is
believing that you are a ghost;
it feeds on lengthy periods alone.

For hours, I cannot see the hand in front of my face; I cannot see my arms, my knees, my feet. In my box, I have no impact on the world, which travels on its course quite as if I were not in it. People pass the silent, shuttered house and, if they think at all, they probably conclude that it is empty. And what does dwell within? A thing that lurks, that creeps, that mopes, that wanders now and then from room to room, that flees in terror from the wide-flung welcoming front door, the joyful flicking-on of lights.

It is not surprising that I have delusions of non-existence.

And, lastly, there’s the thought that lurks at the bottom of the pool, where debris and slime have settled in layers, and the water is viscous and dim. It is an enormous pike, black and massive and strong, with spines along its back and rows of razor teeth. It can stay hidden for days, motionless in some mud hole, and I will catch no glimpses of its mottled, warty skin. But it will always re-emerge to float about the lower reaches of my soul. Its name, of course, is
suicide.

Most of the time, I do not want to die. But I would like to have the means of death within my grasp. I want to feel the luxury of choice, to know the answer to “How do I bear this?” need not always be “Endure.”

I fret about the ways and means. I shrink from pain and violence, from mess, from the possibility of a botched job. I worry for the person who will find me, believe a still form on a bed would be less horrible than a bathtub full of blood. I am nervous of that period after the irrevocable act has been committed but before unconsciousness supervenes; in that intervening time, it is surely not impossible that your mind could change. How many suicides die in mental anguish, having clarified their true desires only by taking a drastic and irreversible step? There are no feedback forms beyond the grave.

I would like to have a stock of pills. I would keep them in the corner of a cupboard; they would be my insurance policy, their very presence easing my mind. But how do I obtain them? To phone my doctor and claim trouble sleeping is possible, but it is doubtful that the subterfuge could be sustained; my doctor knows my situation, and would swiftly smell a rat.

Then there is the wild world of the Internet, where, according to concerned voices on Radio 4, a multiplicity of sites offer detailed how-to guidance, chat rooms facilitate bonding with others also contemplating the exit, and online pharmacies supply the necessary dope.

There is a computer very close to my lair. It lives, in fact, in the room next door. But for me it is a shuttered, silent portal—screens burn me faster and more horribly than virtually anything else. I need an intermediary to surf the superhighway, and intermediaries are not, unfortunately, automata, but have thoughts and feelings of their own. Even if I could find one sufficiently indifferent to help me, it is unlikely that they would be blasé about the legal consequences.

So my stock of pills remains a pipe dream. Instead, I must formulate an insurance policy using materials that are to hand. In the kitchen drawer lie knives and a sharpening tool. My plan would be to file the longest to exquisite sharpness, and then, like the ancient Romans, fall on my sword.

It is amazing how much better I feel, once I have worked this out.

I
WOULD LIKE
to talk about suicide, but it is very, very hard; even more than death itself, this is the ultimate taboo. It touches people’s rawest, most secret parts, throwing up questions about the value of a life; about what can be stripped away before it is no longer worth the living; about what they might have done, or have not done, to make my days more bearable; about how they might act, how they might feel, if they were in my place.

So, mostly, I try not to mention it. But sometimes, I feel that if I do not then I will burst with despair. Pressure builds within me, over a period of time, and there
is only one release: to say, “I think I’m going to kill myself” and to say it to a listening ear.

People respond in very different ways. There is always a moment of shocked silence, which is how I know I have said the unsayable, broken some unwritten rule, taken my pants off in a public place.

My friend Ellen says, when I come out with my statement abruptly one day when we are talking on the phone, “Oh, but Pete would be so upset, wouldn’t he, if you did that.”

“He may be upset in the short term,” I reply, “but in the long term he would benefit. It would set him free.”

“Oh, I’m sure he wouldn’t think like that.”

But I am not so sure. And I soon change the subject, because I feel I am not getting an adequate response. I need something harder and firmer than the temporary feelings of a lover on which to build a case for my continuance.

When I make my statement to my brother, his reaction is simple and direct. “Don’t do that,” he says. “It would break our hearts.”

His answer moves me to tears. But when I say it to my mother, she replies, “Well, I’d rather you didn’t, but ultimately it’s your choice.”

I am shocked. I feel as if she has just hit me. Surely this is not what mothers are supposed to say—they are supposed to weep, and plead, and tell you how much they would miss you.

But there is history here, a complex and tragic tale. When I was small, my mother’s own mother developed motor neurone disease. It is the disease which laughs in
the face of the hospice movement and the advocates of palliative care: the victim gradually loses the movement of all their muscles, and ends up in a prolonged state of stalemate—not dying, but unable to swallow, excrete or communicate. There is little that can be done now to relieve this horror; in the early seventies, there was less.