by Anna Lyndsey
I remember the man we hired to call the dancing, huge, impossibly extrovert, looking like a portrait of Henry VIII; my mother, in brown velvet, sitting down at the piano and busking Scottish songs. I remember discovering, at the end of the evening, that I have been so busy talking to people that I have hardly eaten any food (two olives and a potato) and therefore have no idea whether, after all our care with caterers, it was any good; retreating upstairs twice, with some select companions, to rest my skin and chat for a while in the blackness; the spicy smell of pink lilies, as, in the heat of bodies, they slowly unfurled their long-lipped blooms, and pumped their perfume into every part of the house.
The Eternal Return
I continue to lurch a little way up the hill of recovery, and then roll down to the bottom again. I might reach stage five, or stage three, or stage ten, before a snake slips under my foot, and I lose all the ground that I have gained. Plans made in hope during an upward trajectory become, by the date they should come to fruition, mere absurdities; it is hard to believe that they once seemed within my grasp.
Three times I arrange to go to Stonehenge at dawn, a most suitable trip for a light-sensitive person, when one can pay to be let in and walk among the stones. There is always high demand, and booking is required several months ahead, plus the completion of an application form requiring details of “musical instruments” and “any ceremony that will be performed.” But each time the date arrives, everything has changed, my skin is flaming, the trip impossible; things are always being cancelled and dismantled—caravan sites unbooked, guests disinvited, concert tickets left unused.
I should become inured. But I do not.
I lose whole seasons, and sometimes more than seasons. One year I leave the world in March, icy winds whipping the daffodils, and come into it again in the sullen heat of June. The next, I water the garden on an evening in May, inhaling the sweetness of lilac and the sour tang of hawthorn, sensing in everything the bubbling expectancy of summer. I will not stir outside again until the leaves are turning, and all the exuberance rots on the compost heap or hangs limply from shrivelled stems. It is as if I open a secret door in time, wander into a dark side passage, and am unable to find an exit. I grope my way forward, not knowing how far I have to go, until suddenly my fingers close on a handle set into the wall, a door opens, and I find myself on the main route again, but a long way further on.
When I look back, these blocks of time are blanked out in my mind, scored through with a thick black marker as if my memories were documents redacted by some conscientious official. But it’s not true to say I retain nothing from these periods of abeyance. From that lost summer, roses and apples make up my memories. The roses were cut for me by Pete, and glowed darkly in the curtained living room, scenting the shadowy air. I would lift the vases to my face, and press my nose to the velvety depths, and breathe and breathe, as if each flower were the mouth of a pipe connecting me to the world. The apples piled up in boxes on the kitchen floor, enormous, shining, warm from the sun, astonishingly perfect, endless. I would go into the kitchen, just to gaze. They seemed an unasked-for, slightly inconvenient miracle, performed on the apple tree by a passing angel in randomly benevolent mood, unaware of the girl inside the house, who would have liked a miracle for herself.
Pete shows me photos during these dark times, a procession of shining images on a tiny screen. He collects them in the world outside, fixes them in his camera like bright butterflies, lays his haul before me, to show what he has seen.
This is how he shares with me the landscapes that we loved, together, in the life before. He connects me, through the pictures, to his travels, keeps me in some way with him as he wanders through the world.
Blue skies over fields pocked with haystacks; a hurly-burly of poppies; sun-dappled green.
Low light on autumn beeches; red leaves in water; a fungus like fine china on a shaggy tablecloth of moss.
Through them I know the rhythm of the seasons, the alteration of the quality of light, as the sun arcs high and steep towards midsummer then drops down to the low rays of the turn of the year. Through them I see the different plants come into leaf and flower and fruit, each in their time; I see the trees blaze in glory and then burn away to stiff black fingers poking at sullen skies.
A frosted birch on a path that leads into mist. Swirl patterns in the ice over a pond. Five slender trees in snow, dancing.
Snowdrops in profusion beside dark water. A single daffodil, snowy and surprised. Multi-coloured primroses, advancing.
Time Bends
I am in the garden with my oldest friend, hitting a tumbling shuttlecock high, high up into a lilac-blue sky. It is the evening of a breathless day, the sun just poised above the horizon, the last rays slipping between long shadows to set patches of foliage ablaze. On one side the game is hemmed in by the pots on the patio, on the other by the straggling branches of the cherry tree. There is no net—it’s exhilarating enough to keep up a rally, to feel the satisfying “thwunk” as the shuttlecock’s rubbery nose connects with the centre of the racket strings.
My friend is wearing sandals and a summer dress. I am wearing a straw hat, a tailored jacket, a long-sleeved T-shirt, a long skirt, leggings, socks and lace-up boots. My body temperature is rising steadily. Sweat trickles down my neck and back. Each time I move, fabrics clutch my flesh like damp unwelcome hands. But I don’t care. I’m outside, I’m free, I’m moving about on the surface of the earth.
I clip the shuttlecock with the edge of my racket, and it zips off sideways. “Bother, I can’t do backhands,” I say. “I think it went into this bush.” I delve among the cool green stems, inhaling the moist fragrance of the soil, until I find a flash of white. I serve to start the next rally, and my friend hits a soaring return—but then, lunging for the place where the shuttlecock should be, my racket sweeps only empty, heavy air. The highest branch of the cherry tree, reaching over the lawn like a hairy admonitory arm, has grabbed the shuttlecock at the top of its flight path, and held it fast.
“Oh flamers,” says my friend. “It’s stuck.”
The two of us approach the tree. We grasp the rough divided trunks and shake them hard. Leaves and bits of twig fall from the tree on to our heads. A perturbed bird scoots out to one side and settles on the fence. The shuttlecock stays on its high perch.
“We could try throwing a racket at it,” I suggest.
“That’ll probably get stuck too,” my friend replies.
And suddenly time bends, and the years fold back upon themselves, and I am ten years old again, and my friend is nine, and we are in another garden in another time, barefoot among the daisies, looking upwards into a different tree and laughing. Three shuttlecocks and two rackets are held captive high inside its intricate canopy, completely out of reach.
My thoughts reach out to the child that I was, far away on the other side of the darkness, innocent of my future, full of loopy hopes and dreams. I am overwhelmed by a ferocious sense of continuity, a pull through my solar plexus as though I were attached to a giant anchor chain. Beneath the deformations of solitude, the dents left by acute despair, the slimy residue of chronic fear (of painful death, of dissolution, of the unravelling of my mind), beneath all the accretions of suffering, I am still that self, the core of me unchanged. And my friend, whose memories entwine with mine, stands alongside me, my witness and my proof.
I step away from the tree. With one hand to my hat to hold it on my head, I lean back to calculate my aim. Then I hurl my racket into the sultry air. Head over handle it turns as it soars, a final sunbeam catching the silver frame and making it flash fire. The racket crashes into the straggling branch, and the shuttlecock springs free. Both hang for a moment in the lilac sky, an outline moon and a feathery star, before they plunge to earth.
Unexpected
“I found something unexpected in the garden this afternoon,” Pete says over dinner one Saturday evening. He has been cutting the grass, and taking annuals out of pots, and doing
other end-of-summer tasks.
“Goodness,” I say. “What was that? Was it a wild boar?”
“No, not one of those. I know you’d like it to be, darling, but it wasn’t.”
“A frog then.” Our garden backs on to the little valley with the stream; frogs occasionally hop in.
“No. Look, stop trying to guess, because you won’t. It’s the yucca plant. It’s producing a flower.”
“A flower?”
“A whacking great protuberance that’s already about five feet high.”
“How extraordinary—but that yucca …”
“Hasn’t done anything since I bought the house, and that was twenty years ago.”
Indeed, the yucca has always struck me as a tiresome, unlovely plant, squatting too close to the path from the back door like a pair of spiky malevolent pompoms, and periodically having to be cut back with scissors to stop it skewering people’s thighs. Recently, we had discussed digging it out, but concluded that this would be very difficult, and require protective clothing.
I am less well than I was earlier in the summer; we have to wait until well after sunset before I can go outside. Pete points out the nascent flower spike; it is thicker than my wrist, carbuncled with bulges, and with a thrusting, pointed head.
“That’s obscene,” I say. “How did it get that big without us noticing?”
“They sort of sneak up on you,” says Pete.
“It’s positively sinister.”
And each day, when I venture into the garden at the grey end of dusk, the thing seems to have grown another couple of inches, and is developing side shoots, studded with pale buds.
One week later, over dinner, Pete says to me, “I found something else unexpected in the garden, and don’t try to guess what it is.”
“Well, what is it then?”
“There’s another massive flower spike coming out of the yucca.”
“Another one? But that’s ridiculous. I’ve been out looking at it every evening. How can I not have noticed that?”
And we go outside, and there it is.
The unexpected pair grow bigger and bigger, and the buds burst into a myriad of white bell-shaped flowers, like small upside-down tulips, with a faint smell of oranges. The spears are taller than me, and taller than Pete—a good eight feet, and still increasing.
“I’m going to take a picture of this,” he says, one evening. “But you’ll have to be in it, to show the scale. I won’t use flash. It will be an opportunity to try out the low-light capability on my new camera.”
“You should be in it too,” I say. “You could use your infra-red remote control thing.”
So he bounds upstairs to fetch his equipment, and, returning to the garden, extends the legs of his tripod so that it perches gawkily on the lawn, and attaches the camera to its head.
“Now, stand as close as possible to the flower spikes, and look surprised.”
I do my best to follow these instructions without getting a sword-shaped leaf in my neck. Pete fiddles with the settings, muttering to himself.
“It’s really getting quite dark now,” I say. “Do you think it’s going to work?”
“It should be OK,” he says abstractedly. “I’ve got an enormous high-quality engine. Right.” He comes and stands behind me, putting his arms round my waist. “It’s going to be a long exposure, so try not to move.”
He presses the remote control device, and the camera responds with an opening “click.” We stand there motionless for an interminable period, until we hear with relief the final “ker-lunk.”
A few days later, having played with the file on the computer, Pete prints out the picture, and shows me. And there we are, enclosed within the muted greys and greens of twilight: me in hat, coat and boots, a pale face under a peaked brim, with a fixed and goofy smile; Pete, long and thin, in a zip-up cardigan, his features set in a quizzical expression. Beside us, monstrous yet beautiful, is a giant floral V-sign—in our case, sadly, not V for Victory, but at least for the time being, against all odds, two fingers stuck up at fate.
Since we stood together for our wedding photos, six years and ten months have passed. And what years—mottled, streaked and brindled like a complicated leopard, with alternate patches of despair and hope. My dark vow, as yet untested, is intact; I know now only how much harder it will be to keep.
Ending
I thought there’d be an ending to this story. Writing my final chapters I tried a new pill, and the initial results were good. I believed victory over the darkness would be the climax of my tale, an uplifting and satisfying denouement.
Life does not follow the narrative structures of Art. Corrupted by fiction, I anticipated change and plot development; I overlooked the awesome power of things to stay the same. The new pill took me on one more trip around my roundabout—I did not find the exit. In the teeth of every reasonable expectation, impossible lives, as I have found, endure.
These are the things that I have learnt:
The noblest truth is “There is suffering.” The whole of history having been filled with such exotic and multifarious forms of it, “Why me?” is the question of an idiot. The sensible person says simply, “Why not?”
The great streams of human culture—literature, religion and philosophy—are wiser guides to living gracefully with suffering than modern pseudo-psychologies.
It is not possible to predict how people will respond to chronic illness until it happens. Friends you thought you’d have for ever withdraw in puzzlement and distaste. Others, often quite unexpected others, set about the business of cheering you up, and stick to it, beautifully, for years.
Joy lurks in every mundane thing, just waiting to be found.
Love is impervious to reason.
And words are wonderful.
Author’s Note
How do you write about having to live entirely in the dark? When I started in August 2010, well into my fourth extended period of total black, the result was not encouraging, reading, in broad terms, something like this:
Monday: stayed in dark
Tuesday: stayed in dark
Wednesday: stayed in dark
Even I, a novice, realised that as literature it lacked a certain vim.
Clearly I had to abandon the chronological approach—but what could I do instead? In the end, I wrote short sections, each focused on a different aspect of my dark life. So Part One draws on incidents from different periods that I spent in the black. In this state, time alters itself, becomes amorphous rather than linear; you lose track of how long you’ve been in it, and you do not know if, this time, it will be for ever, or if or when you will ever get out.
In Part Two, the darkness begins to recede, but in a way that is partial and always temporary. I did not want to bore everybody by describing each of my slow climbs back towards the light. So I made a selection of the most significant and memorable steps.
For people interested in the actual order of events—maddening and frustrating as it was—I have included a diagram in the Appendix.
Many people have generously allowed me to write about them. Names and some details have been changed in order to protect privacy. I have taken the liberty of reconstructing conversations, to give a more complete sense of my experience, based on what I can remember regarding the sort of thing that was said. I did not know (thank goodness) what my future held, so I did not take contemporaneous notes.
Appendix
“What are you doing, darling? What’s all this scrawl?”
“I’m trying to think of a way to set out all the ups and downs of my illness, without it getting completely boring and confusing.”
“What you need,” Pete says, “is a graph.”
“A graph?”
“Yes. You’ve got two main variables—time and light sensitivity—and you plot one against the other.”
“How do you mean?”
“Well, you put time as the abscissa—”
“The what?”
“The abscissa.” He draws lines on my notebook. “And light tolerance as the ordinate.”
“Do you mean the x coordinate and the y coordinate?”
“Yes—those are the mathematical names.”
“Goodness,” I say, getting excited, “I’ve never heard the word ‘abscissa.’ ”
Pete is the only person I know who, though completely unpretentious and unassuming, will periodically use, in the course of everyday conversation, a word that is entirely new to me, and then stomp about insisting that he does not know what the fuss is about, and that whatever it is is a “perfectly normal word.” I must confess I find this rather erotic.
So I plot time along the x-axis, and light tolerance along the y-axis, stack the different years on top of each other so the graph is not too long and thin, and the result is:
Fig. 1: Variation of light tolerance over time in one highly photosensitive female
Acknowledgements
Nina Milton made helpful and encouraging comments on the first draft. My mother read the next and gave it to her friend Babette, who gave it to her friend Anna Goodall, who passed it to Jane Finigan at Lutyens and Rubinstein. Jane wrote me a wonderful letter that stimulated me to expand it to the size of a proper book, and Jane is now my agent.
