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Authors: Molly Birnbaum

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BOOK: Season to Taste
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Sacks’s visual hallucinations, though, fascinated him. Small, often geometric shapes danced frequently before his eyes. “Sometimes squares, sometimes triangles—always moving, slightly, like daisies in a windy field,” he said. “My favorites are the miniature pineapples. Or the tiny sea urchins.”

“Why do you think you see pineapples and tiny sea urchins?” I asked, intrigued.
What an odd thing to see,
I thought. I wonder what that says about his subconscious. I wonder what smelling my own brain said about mine.

“I have no idea,” he said. “But I’m going to get some brain scans next week. I’d like to figure myself out.”

I paused for a moment. “Me too.”

I stayed for a little over an hour. Before I left, Sacks reached over his desk and picked up two rocks that were perched on the shelf above. One was bright yellow, the other a deep purple. Crystallized and bumpy, they were unlike anything I had ever seen. He held out one, the color of a canary.

“Do you know what this is?” he asked.

“No, I don’t think I do.”

“Smell it,” he said. “We’ll see if you can.”

I put my nose close to the rock that he held in his outstretched palm. I took a deep breath. Inhaling and exhaling through my nose. “No,” I sighed. “Nothing.”

“It’s sulfur,” Sacks said. “It smells strongly. I put these two rocks there on the shelf when my vision first started to go. I wanted to make sure I could still tell the difference between purple and yellow.”

“And can you?” I asked as we walked toward the exit. I glanced up and noticed the words “Tiny Sea Urchin” scrawled sideways in black marker on the large dry-erase board behind the door.

“Well, no. But I can tell them apart with my nose now,” he said. “We’re on opposite sides, you and me. It’s all I’ve got.”

Chapter 6
Pink Lemonade and Whiskey

IN WHICH IT STARTS TO COME TOGETHER

I COULD SMELL THE WAITING ROOM.

It smelled of lavender shampoo, of scrubbed tile floors, of bodies just in from the cold. There was a hint of laundry detergent, a puff of stale bread, the Clorox-clean odor to every hospital I’d known. The scent rose and fell with the movement of each patient, vibrating with a familiar Sunday-morning scent of newspaper print and a photocopier’s inky heat. A rose-saturated perfume, reminding me of my grandmother. Orange peel, mint-flecked tea. A bit of sweat—sour, like the gym. These smells came together like a painter’s palette, a muddle of deep dark brown smeared on canvas. I concentrated on my coffee, which steamed straight hazelnut from the Styrofoam cup in my hand.

I was sitting in the waiting room of the University of Pennsylvania’s Taste and Smell Center, a row of small labs and offices dedicated to the evaluation of patients with chemosensory disorders. The clinic, which stands kitty-corner to the department of Otorhinology: Head and Neck Surgery on the fifth floor of the university’s hospital, was founded in 1980 by Richard Doty, editor of
The Handbook of Olfaction and Gustation
and author of many books, including
The Great Pheromone Myth
. He is an enthusiastic gray-haired scientist with laugh lines and a firm handshake. Doty and a small handful of assistants operate the part-time program, where they evaluate up to ten patients a day on three or four days of every month.

I came to watch.

I had taken the train from New York City at 5:30 that morning, dozing over my computer and my notebook, which was half full of my pencil scrawl, the beginnings of my research on smell. I walked the almost mile from the station to the hospital as the sun rose, puffing white clouds of steam into the air with each breath.

This was my first trip to the clinic—the first of many. Fresh off my meeting with Sacks, I had e-mailed Doty after reading about his work. I knew, objectively, that my injury existed far beyond myself. But I wanted to put it in a broader context. I wanted doctors. I wanted patients. What was it like to treat a disease with no cure? Was I the only one haunted by my loss?

Doty had responded almost immediately. “If you wanted to come up during one of our clinic days, this might be quite insightful for you,” he had e-mailed me back.

On this first day in the clinic I felt shaky. I felt unsure of myself, of even how to introduce myself to the day’s patients—six of them, ranging from middle-aged to teenaged, sandy-haired women and tired-eyed men—who trickled in around me one by one. I shrunk into my seat, one of nine in the windowless waiting room, spread around the small space like an open parenthesis. I waited for Doty to emerge from behind his thick office door.

I wasn’t sure what to expect, but I knew what I wanted. I wanted to witness loss like mine, the kind that hung invisible but claustrophobic, the kind that had influenced every aspect of life. I wanted to know that the sense of smell was not about only me. I wanted to meet others who had gone through the same thing. I wanted it to be about them.

I was in the right place. Every patient in the waiting room that morning had a lost or distorted sense of smell. Just a droplet of the estimated 1 to 2 percent of American adults—approximately three million—with a disorder of this kind. I would soon learn that their olfactory problems stemmed from all sorts of sources—viral infection, allergies, head trauma, age. Some had arrived with an understanding of their etiology; others came fuddled by mystery. Though the clinic prefaces each visit with doubt—“We only evaluate; we don’t treat,” I heard the secretary say on the phone—these patients were all there for answers. They wanted cures.

The morning began promptly at 7:30
A.M.
when Doty, wearing a white doctor’s coat and a Winnie the Pooh tie, opened the door to his office and called me in. I felt the stares against my back as I entered his cluttered workspace, where I could smell a vial of vanilla extract perched on a shelf. I took a seat near his desk, which was almost blotted out under piles of papers and books. I glanced at a few titles:
Olfaction and Taste III,
The Evolution of Consciousness,
Who Cut the Cheese?

Each clinic day for Doty starts with a series of interviews. The patients enter his office one at a time. The origins of most disorders can be determined from history, Doty explained, and he takes time to talk about each patient’s past. Head trauma or virus, toxins or chemotherapy, surgery or allergies. They cover it all. Then they discuss the present. Doty hears about problems that range from a simple absence to a persistent unpleasant taste in the mouth, from ghostly apparitions of scent to distortions without apparent cause. Doty lets his patients know what to expect at the clinic: a long day of tests—ones that range from the specificity of taste on the tongue to the threshold of odors in the nose, from measuring the airwaves of the nostrils to scratch-and-sniff recognition. “It’s a fact-finding mission,” Doty told me before we began.

We agreed I would observe his interactions with patients throughout the day, assuming each allowed my presence. I sat off to the side, pen poised, as each patient entered the office. Many came holding copies of their CT scans and MRIs, purses and papers clutched nervously on their laps. I stood and smiled as Doty introduced me and asked permission for me to sit in. I felt relief when each allowed me to listen, surprised that they didn’t seem to care. Most appeared pleased to have a witness to their story. I listened as they explained losses and irregularities in faltering, hopeful tones—problems of taste and smell that had been present anywhere between months and years. For many, seeing Doty at the clinic was the first attempt to solve their olfactory problems. For others, after dismissive appointments with primary care doctors and ENTs, the visit was a desperate last try. For all, the inability to smell had sapped the texture from everyday experience.

Doty listened, flipping through reams of papers holding medical histories and answers to the patient questionnaire. I watched him engage each visitor in friendly banter while they navigated their stories of loss and confusion, moving seamlessly between topics: anosmia to ancient art, distortion to NASCAR, sinusitis to Vietnam. He showed compassion to those who were upset and joked with the uncomfortable to lighten the mood. He took everyone seriously.

One by one, I met others whose loss rivaled mine. I met a middle-aged woman with salt-and-pepper hair who had arrived in the office holding a paperback book and a banana. She couldn’t smell normally and didn’t know why. “Car exhaust, coffee, laundry detergent: they all smell like skunk,” she said.

I met a retired teacher who constantly smelled the odor of burnt toast and an aging art historian with a gentle smile who could smell garlic but not perfume. She may have reduced olfactory abilities due simply to her years, Doty said. “As we go through life everything takes a toll. Little islands of damage accumulate unnoticed until something innocuous lets it go, like a waterfall.”

I met an eighteen-year-old boy who had been in a car accident that had hurtled him face-first against the windshield from within. The force of the collision, two years before, had almost completely detached his nose. His lower jaw had been disconnected, his upper fractured in a number of places. The bones around both of his eye sockets were broken, and his sinuses? “Like dust,” he said. It was only months later, when the metal plates were supporting his skull and he could walk without pain, that he realized something else was wrong. Cologne was a monotone nothing. Milk tasted like water. Aside from their color, flowers were bland. “Hey, what’s going on?” he had asked his mother one afternoon. “I can’t smell nothin’.”

I met a woman whose ex-husband, she told Doty through a sudden onset of tears, had hit her—“on the head, so the bruises wouldn’t show”—for a decade. She couldn’t smell and now, after a divorce and years spent caring for her own ailing mother, she was there to finally care for herself. Doty spoke with her kindly, warmly, even offering to drive her downtown to meet her daughter after work himself. When she stepped back out into the waiting room, he closed the door and looked at me with downturned lips. “The nerves in your brain are like Silly Putty,” he said. “A really hard hit and they will snap.”

In these meetings I listened to Doty voice cautious thoughts on the cause of damage: virus or trauma, polyps or allergies or the side effects to various drugs. He spoke of prognosis: “With complete smell loss, we see around 11 percent recovery; with partial, it’s around 23 percent,” he explained. He was careful not to give too much hope.

And as I listened to the patients, who each arrived at the clinic filled with the day-to-day reality of their loss, just as I had arrived at a different clinic those years before, I felt a sorrow mixed with the low thrum of guilt. My recovery, spun of youth and luck, was far from normal. The scent of the waiting room, pale as it was, lay warm in my nose.

Later, I wandered through the various testing rooms of the clinic where each patient had their nostrils and tongues prodded, pricked, and doused. The seven tests at this Taste and Smell Center include swishing solutions of salty, sweet, bitter, and sour on the tongue and a scratch-and-sniff test called the University of Pennsylvania Smell Identification Test (UPSIT), which Doty had developed soon after opening the clinic. I watched residents pipe little droplets onto specific points of the tongue. I watched technicians conduct electromagnetic surveys of the nasal cavity, pressed together with a patient in a small dark room as the machine clicked like a cricket. I watched odor memory tests and odor threshold tests. I watched the patients with the identification test spread wide on their laps as they scratched, sniffed, and repeated.

By 4:00
P.M
., when Doty began to wrap up the barrage of tests and interviews with a final one-on-one meeting with each patient, I was so tired that I could hardly keep my eyes open. Again, I sat in the corner of the office to watch. There were statistics. There were test results. Doty confirmed the loss of scent, the function of tongue, the unrelenting allergies. Though I knew when I arrived at the clinic that little could be done for those with olfactory disorders, I found myself surprised all the same when patient after patient left the room without a cure, without a follow-up appointment made. Some patients left happy to have a clinical diagnosis: the complete loss that comes with anosmia, the partial of hyposmia, the ghostly apparitions of phantosmia. They were happy to have a concrete case, to have been given a name. They tucked Doty’s official letter of results and recommendation carefully into their bags. Others, I found, were frustrated. Angry, even, that there was no treatment, that they had no plan.

When the young man who had been in the car accident entered the office for the final time, Doty spoke calmly. “The tests show, like I’m sure you already realize, that you have lost all olfactory function. There is nothing left.”

He nodded. I shifted in my chair.

“There’s not much we can do about this,” Doty continued. “To put it in perspective, about 10 percent of those with head injury regain their damaged sense of smell. But that usually begins within a year of the accident. I’m afraid you don’t have much hope.”

The young man looked down at his hands.

“And, you know, sometimes I baby the people who come into this office,” Doty continued. “I say, there’s hope, you’ll be fine, there’s always hope. But for you, son, I think we need to be really pragmatic. You’ve gone through something traumatic and emerged alive and well. Think about the big picture. At a young age you have survived something large. Think about what you can do with that. Let’s put it in perspective.”

Doty spoke seriously but respectfully—talking man to man, and not doctor to boy. They were both silent for a moment. I kept my pen hovering over my notebook. The room seemed to tingle, like static electricity.

“You can cry in your milk,” said Doty, finally. “Or you can deal. It’s a choice you’ll have to make.”

The boy looked up. I thought I saw a smile flit across his face.

“I’ll deal,” he said.

BOOK: Season to Taste
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