When Chronic Pain Dulls My Senses, Perfume Helps Me Reclaim Them

On a flare-up day, I can barely hobble from my bed to the toilet and back. The pain is like a hot metal screw being pushed into my hip joint. Pain that makes edges blur, wears out my lungs, makes my shoulders shake. I spend all day in bed, eyes screwed up against the light, whimpering. My partner brings me water, small things to eat. And, because I am so thoroughly miserable, a bunch of fresh lavender from the market.

When the meds hit and take the hot edge off the stabbing in my pelvis where endometriosis is slowly knitting the organs together, just enough that I can sit up, I curl up on the cool floor by the window. I cradle the bundle of flowers in my lap like a child, pressing my nose into it again and again, breathing in leaf, stem, petal. Honeyed, rough medicine.

I used to be active; I worked multiple jobs, had a social life, flung myself into relationships and ill-advised adventures. But the pain pulled my fingers off of life, one by one. My senses dulled—all except for smell. For some reason, when I could take no pleasure or comfort in touch, when everything I looked at seemed flattened and drained, scent was what found its way in.

Confined to bed for days, I took to reading perfume forums, books by Chandler Burr and Mandy Aftel, and then whatever rarer volumes I could seek out. The only thing that brought me joy was the freshness of rosemary broken between my fingers, or the voluptuous warmth of ambroxan in the bottle of Sì my partner bought for our anniversary.

It was instantaneous pleasure that could resurrect whole worlds and lives I felt forever lost from—the rain on warm brick of my first days at boarding school, or the bracing smoke of summer campfires. It went right to the center of my memory, transporting me from my bed to the many places I’d loved, that felt desperately out of reach.

There are few things that bring us closer to our animal selves than pain. But pain also forces you out of your own body, as if there isn’t room for the both of you. Many people with chronic pain talk about how they struggle to feel ownership of their bodies, how the mind wrenches itself, trying to escape, and how hard it can be to find your way back. There were days when the pain from the endo felt like my vagina was being pushed inside out.

Sometimes, the pain would snake into my spine. My brain would go white, everything reduced to a blistered hum. Everything in my mind was stripped bare. Sometimes, in the worst of it, I couldn’t form words. I would lie, eyes glazed, watching from some splintered place outside my body. I had to track my way back through my nose. If there is anything of us that is animal, that can anchor us in our primal selves, it is smell.

My mother and grandmother passed down a tradition of signature scents—perfumes that were saved up for, bought for an anniversary or a birthday: Opium for my grandmother’s leonine power; Classique and Chanel No. 5 for my mother’s rarefied femininity. Both of them working-class women, getting ready in the dark; pulling up stockings, blotting lipstick carefully, hems mended and stitched neatly. And finally, that breath of perfume at their throats to see them through the day because they walked in air that called them “beautiful” and “powerful,” that announced them before they spoke. I learned that kind of hard-won glamour; that we should have beauty, however much the world wants to keep it from us.

And so I collected perfumes as I grew up. Dolce, a light whiff of orange blossom, for the innocent and feminine person I wanted so desperately to please my family by being. Later, Terre d’Hermes for my years as a baby butch lesbian, trying to impress some beautiful girl. Mitsouko for one of the darkest years of my life, when its dark woods, curling smoke, and sun-starched autumn air kept my back straight, my eyes calm. Now, L’Ombre dans L’Eau, for its fey melancholy, its secrets and its green, green buds pushing through wet dirt, the crisp chill of early spring, when anything can happen.

If there is anything of us that is animal, that can anchor us in our primal selves, it is smell.

As I let myself delight in perfume again, began collecting samples and bottles with serious attention, learning about the moods and histories of the perfumes I loved, I found myself more able to cope—with the constant pain, with feeling butchered by treatment, with the ammonia and bleach rasp of hospital corridors. But I still felt directionless, and spent much of my day confined to bed. When I could get up, I was limited to small walks, with plenty of rests, at the local park or mall, where there were benches, and assistance should I fall.

This went on for months, with little respite or improvement. But on one of these days, about eight months after the pain first started, I wandered into a little hole-in-the-wall place, one I’d barely given a second look to before. Along the back walls of the store, row upon row, were bottles of perfume. Not the mainstream collections of the department stores, these were coveted parfums de niche, ordinarily unavailable where I lived in South Africa.

It was like walking into a cave of treasure. All I could do was drink it in with my eyes, stunned, until the shopkeeper—an elegantly dressed, restless elderly man, asked, “What is your favorite perfume?”

Without thinking, I blurted, “Mitsouko.”

He beamed at that, and, taking it down from the shelf, rhapsodized about the history of Guerlain, how Diaghilev had used it to scent his curtains. I chimed in, eager to share this obsession with someone. Ten minutes later, after we’d raved together about the history of perfume, the vagaries of vanilla harvests, the beauties of natural oak moss, he hired me as an assistant in the shop.

I worked there for almost a year—the hours were short, and the schedule flexible, and I could sit at my leisure, selling niche perfumes from around the world to wealthy locals and tourists. I couldn’t walk properly without a cane, still, and there were many days when even sitting was too much strain on the damaged nerves in my hip.

But I learned how to recognize people’s desires in their faces, what scents made their eyes widen. I learned to never let a customer out the door without at least one spray on their wrist. More often than not, they’d be back by the end of the day, having fallen in love with the lingering smell as it bloomed on their skin with the heat of the day.

I learned how joy was still and always the thing that people strove for, earnest and simple as children. And I learned how easy the body’s joys could be, and that they could be enough.

I wrote to a local perfumer, Agata Karolina, telling her about what perfume had done for me, offering to work as an apprentice for the chance to learn this rare vocation—there are fewer perfumers in the world than there are astronauts. After a quick-fire, sharp-eyed meeting, she took me on.

For a year and a half, I learned to mix perfume oils. I learned the mercurial nuances of natural oils, how to tell by scent the differences of harvest, of year, of which side of a ridge the plant had been grown on. I learned how oakmoss is like a vivid ghost, how it prowls and ripples in the air, undergrowth and nape of the neck, autumn sunlight and wet earth.

Slowly, I learned to engage all of myself again, even when the pain pulled at me—to feel the texture of angelica as I crushed it in my hand, to spot ripeness or rot at a glance. And to let the things I encountered fill me up from inside, through the breath, through the tongue. I hadn’t fully realized it yet, but I was learning that pain was not the only thing that could inhabit me.

One day, Agata gleefully put a package wrapped in plastic in my hands, saying only, “Wondrous things!” And I leaned down to smell, for the first time, raw musk. Repulsion and desire, a shiver down the spine and rough voluptuousness in the back of the mouth. I realized, startled, that I had felt something with my whole body for the first time in months.

Slowly, I started to write again. Perfume had cultivated inside me a rapt, rarefied attention—I was awake to the world again, and I found my body waiting for me, alive to the ends of each nerve.

Perfume had cultivated inside me a rapt, rarefied attention—I was awake to the world again.

I applied to a residency at the Cité Internationale des Arts in Paris, proposing to write a book about perfume. When I was accepted, I wandered the Marais and Ile de la Cité for three months, feeling like my skin had been peeled off—everything was so vivid, so overwhelmingly alive. It was almost too much. Paris is a city full of ghosts—of the smells of piss and shit mingling with fresh bread, lilies at someone’s window, shivers of iris and smoke from a passing coat, incense blue in the air of every church.

On a dappled June day, I visited the Osmothèque for the first time—the world’s largest scent archive, where scents so rare they can be smelled nowhere else on earth are kept preserved in special vials, covered with a layer of gas. For four hours, I talked with Isabelle Chazot, a vivid and elegant curator at the museum, about the aching fact that every time someone comes there, pays the fee for a private consultation, and smells a perfume of which there is only this last sample left in all the world, those molecules are lost forever.

Perfume taught me that presence can take many forms. Over the years I’ve been ill, I have lost a lot—my physical abilities to do many ordinary things, my hold on my old life, the career I thought I’d have in the NGO sector, or in academia, ideas of what I thought I could be. Perfume taught me to live with life’s many small losses. To breathe it in is to destroy it. It is there—alive, airborne, only once. As you take it in it fills you—with recollection, with desire, with revulsion, with whatever resonance it has. And then it’s gone.

Isabelle smiled, her finger on her cheek, and murmured, “You know, I say sometimes we are keepers of emotion here. Perhaps we are also keepers of spirits. Keepers of ghosts.”

When I tell people I am writing a book about perfume, many of them roll their eyes, saying some version of, “That kind of thing’s okay for magazines, but are you writing anything else?” They mean to say, are you writing anything serious?

Here’s the thing—the world is burning. We have so little time, and so little justice, to go around. Every minute brings a new accounting of the vast burden of it all—the ecosystems decimated, the human beings brutalized, profit wrung loose from all of us until we barely recognize our place on the earth anymore. But we are still, still, soft animals.

We need beauty, pleasure, to find our place in the world. We nuzzle close to one another. We lift our hands to reach across everything, for another warm touch. And we delight, still. Even a small pleasure is enough to connect us to something older and larger than we are.

When I am bedridden, when I can’t move from the pain, dipping my head into a bundle of lavender is enough to remind me that I am alive, that our bodies can hold it all—the joy and hurt both. That no matter what, there is something in us still, stubbornly alive to the world, and that the world, in turn, has not forgotten us.

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