Authors: Molly Birnbaum
But in the process of regeneration, the neurons can be tangled. They can be caught. Some can retrace the path to the brain effectively while others are stopped along the way. They can be stymied by scar tissue, by bone, by internal damage to the tissue of the epithelium. When the pattern is disrupted, things can go very wrong.
The cause of phantoms hasn’t been fully explored in the scientific literature. It’s possible that they are caused by neurons misfiring to the brain. It’s possible the brain is retrieving signals never sent. These apparitions of aroma are often compared to the phantom limbs of amputees, who can feel the arm or leg they no longer possess, clearly and strongly, often held at painful angles with no option for relief. A lot of time and energy has been spent understanding these ghostly appendages, now commonly believed to be caused by a cross-wiring—a reorganization—in the somatosensory cortex, a section of the brain responsible for movement and motor information.
Phantom smells, however, are only one way in which perception can go wrong. If only some of the neurons make their way back to the olfactory bulb, the first stop in the brain, in the process of regeneration, the signals sent to the higher regions of processing can be muddled. The resulting scent is often strange and unpleasant. Shocking, even. These are distortions, the internal warping of once familiar smells.
Linda Woodard, a former anosmic, for example, lost her sense of smell in the early 1990s after a respiratory illness. She was thrilled when odors began to return. She was one of the lucky ones able to experience regeneration. The first scent to come back was garlic. But garlic, she soon realized, came frequently. Too frequently. Woodard smelled garlic in place of almost everything. Her entire environment was distorted to garlic’s thick scent. “The worst was a summer-fresh ripe peach,” she said. “When it approached my mouth, and all I could sense was garlic, I couldn’t eat.”
What can be done? For the phantom limbs of amputation, V. S. Ramachandran, an expert on the plasticity of the human brain, discovered through experimentation that by using a mirror placed in strategic points, an amputee can trick his or her brain into relieving the pain of the physical apparition. “The brain should be thought of not as a hierarchy of organised autonomous modules, each of which delivers its output to the next level, but as a set of complex interacting networks that are in a state of dynamic equilibrium with the brain’s environment,” he wrote in a 2005 paper titled “Plasticity and Functional Recovery in Neurology.” But for smells this cannot yet be done.
Donald Leopold at the University of Nebraska Medical Center once performed a procedure that offered one solution. A drastic solution. In this procedure, he physically went in to remove the olfactory nerves and olfactory mucosa and, as a result, effectively wiped out the entire sense of smell. Leopold no longer does this procedure, he told me, because “the risks outweigh the benefits.” He is working on a slightly different, less risky procedure, though also suggests just waiting it out, as phantoms are known to fade with time. But for some patients, like Rikki Worthen, the possibility of the operation was more attractive than living with the pain of the surreal. Worthen, an anosmic who dreads the fact that each day the scent of her children’s hair has morphed to burnt coffee, told me: “I still can’t help but wonder if being totally anosmic would be better. Living in a twisted world of smells and tastes is still really hard on me emotionally. Hopefully one day I will adjust.”
For most, there is little hope of a remedy.
At the end of Rizzo’s day in the clinic, I sat in on the exit interview. He and Doty spoke about the test results. Rizzo could taste, but could barely smell. And the phantoms? He should wait those out, Doty said.
“But what can I do?” Rizzo asked.
Doty suggested his usual: alpha-lipoic acid; take spices out of the cupboard and practice. “It’s only been four months,” Doty said. “There is still light at the end of this tunnel.”
“If nothing happens, though, what’s the recourse?” Rizzo asked.
“If nothing happens over the next year—well, it is what it is,” Doty said. “Olfaction is dynamic, but generally after a year, maybe a year and a half, it’s dead.” The hard syllable of his final word seemed to echo in the room. “Hopefully in the next decade we’ll have a better idea of how to fix problems like yours.”
EIGHT MONTHS LATER,
I met Rizzo at his Manhattan office.
It was an evening in the first week of December and Rizzo had a small Christmas tree hung with New York Yankees paraphernalia sitting by his desk, blinking colored lights. On the wall I could see the framed certificate announcing his retirement as a master sergeant from the army and a small postcard of Palermo, Sicily, where his family is from, taped to the cabinet by his head. Pictures of his daughters, both in high school, were displayed on his desk. “They’re good kids,” Rizzo told me, proudly. “I want to do well by them.”
“How is your smell?” I asked gingerly, afraid that it was unchanged. I had almost skipped washing my hair that morning, worried that my shampoo would smell to him like rotting flesh. But I asked, holding my breath, hoping for good news.
He gave me a small smile. “There have been improvements,” he said. “That foul smell?” I nodded. “That’s gone.”
The death phantom had floated away. But that didn’t mean Rizzo was free. His sensory world remained distorted, surreal.
He was still haunted by a foul odor. Not the same odor. This one was “indescribable, unpleasant,” Rizzo said. But rather than hover perpetually, irrespective of the environment, this smell replaced many aromas that were once familiar: the barbecue he grilled at his vacation home on the Jersey Shore, the smoke from the vendors selling kabobs on the streets outside his office. “Dog poop and hot dogs smell the same,” he said with a sigh. “It’s very disturbing.” Rizzo couldn’t bear the scent of popcorn or cologne—“I was on the elevator with someone who must have been wearing perfume,” he said, “and I felt nauseous.” He even stopped smoking pipes, which he once did every night.
And lurking behind the distortions, behind the phantoms, the absence remained. Rizzo regularly drove past refineries near his home in New Jersey, the ones that had smelled so strongly of his time in the army when he was deployed to Saudi Arabia. Now he detected nothing. He brought his face down inches from the water near his home on Cape May, trying to breathe in the ocean to no effect.
In the aftermath of his visit to the clinic, Rizzo had followed Doty’s advice. He was taking 200 grams of alpha-lipoic acid, twice a day. He was practicing with bottles of spice from his cupboard. “But I don’t know if that’s doing anything,” he said.
Later, Rizzo and I ate dinner at an Italian restaurant around the block. It was a nice restaurant, with waiters in white-collared shirts and black aprons who spoke with Italian accents.
The combination of distorted reality and striking loss have affected Rizzo’s ability to eat. He’s had to leave dinner parties because the scent of the food made him feel ill. He’s spent many nights making his own dinner because he couldn’t bear the scent of his wife’s cooking. “My family understands,” he said. “But it’s hard.” He still can’t distinguish between vodka, amaretto, or sambuca—which, as a former bartender, leaves him depressed. He can’t touch chocolate, not even the Hershey bars he once loved.
“I feel like I’m being punished,” he said. “I feel like I’ve been cursed.”
Rizzo does remember the way food once smelled. The way it tasted. He’s ecstatic that the experience of eating some foods is returning to normal—like tomatoes, green pears, and pink lemonade, which he drank as an experiment at a picnic (“not the regular lemonade, though,” he said with a shrug). After months, he was finally able to eat the Bolognese sauce his wife makes. “I used to swim in her sauce,” he told me. “She was so happy when I could eat it again.”
“But my life has changed,” he said. “I’ve accepted that.”
Over a plate of rich, earthy stuffed mushrooms (“I can taste the bread crumbs,” he said, “and the olive oil, but not the mushrooms”), and a glass of white wine (“it tastes good,” he said with a relieved smile, “but nothing like wine”), we spoke of his phantom. He still struggled with the memory.
“That was scary,” he said. “That was really scary. The dead tissue, the dead flesh smell. Even in my hands”—he lifted his palms up to his nose, and sniffed long—“I could smell it.”
His regular doctor wondered if the smell was psychological, he told me. Could it be mental trauma rather than physical? Rizzo didn’t believe it, shaking his head as he spoke. But he was concerned.
“Was my mother calling me?” he had wondered. Early on a Sunday morning, overwhelmed with the putrid smell of flesh, he got out of bed and drove to the cemetery where his mother was buried. He stood at her grave, but found no answers.
He found answers nowhere, he said. He didn’t find them from his ENT, who told him there was no hope for his sense of smell. He couldn’t find them online, and even Doty, who sent him away with suggestions but nothing concrete, had left him feeling alone.
Rizzo was coping, he told me. He was patient, he was glad to be alive, he was grateful to be able to function. But he couldn’t ignore the pain and discomfort that came with such an absence, and with such a haunting presence.
“I want there to be more attention on this,” he said, forcefully. He wanted information. He wanted recognition. “This isn’t something that will kill you. It’s not cancer. But it changes your life. I want someone to say that this is a disease.”
When we left, we paused at the entrance to the restaurant and shook hands. I thanked him and was surprised to hear him say how grateful he was to have met me. I blushed.
“You’ve recovered,” he said. “You’ve really given me hope.”
BUT HAD I?
One evening during a three-day visit that I took to Philadelphia to observe at the clinic, I decided to take Doty’s smell test, the UPSIT, myself.
Doty pioneered this scratch-and-sniff odor identification test, which is now widely used to determine the ability of patients to perceive and recognize specific familiar scents, in 1984. Each page of the test—forty of them, all different colors—contained one question. Each question consisted of a scent, hidden behind a surface removable with a scratch. Next to each square of smell were four multiple-choice options. The goal: to correctly label each scent. I opened the booklet at 9:30
P.M.
in my hotel room downtown after a long day at the clinic. I used the hard back end of my eraser-less pencil to free the odors and then, page by page, I leaned in and sniffed.
I could smell every single one. All forty of them. But when I tried to match the smells to the words that should define them, I ran into trouble. A lot of trouble.
I sniffed and looked at the multiple-choice answers. I stared at them until my eyes glazed over. I found that I could hardly recognize any of the scents. I could perceive them; I could smell them all. But the words I once knew floated away from consciousness.
Cherry or honey? Skunk or clove?
Leather hit me over the head. That one was potent, recognizable. Gasoline I could feel.
Good old trigeminal,
I thought. A few of the scents were unmistakable: watermelon, chocolate. But most were much more confusing—wintergreen? Whiskey? Musk? I guessed on many of them.
Why can’t I do this?
I felt unglued.
After I finished the test, I lay back on the bed. What was going on? I thought I could smell.
I arrived at the center at 7:00
A.M.
the next day and handed the completed test to Doty’s secretary. I watched as she graded my answers. It only took a minute.
“How did I do?”
She looked uncomfortable as she handed me the results.
Twenty-eight out of forty.
I must have had a strange expression on my face, because she immediately smiled very wide. “You can smell a little bit,” she said, cheerfully.
I tried to explain. “But I could
smell
every one!”
“Talk to Dr. Doty,” she said with a wave of her hand.
I handed him the test when I walked into his office a few minutes later.
He looked at me with the same expression that he used with many of his patients, one with which I had become so familiar, one filled with patience and a little bit of sorrow.
“So it’s not all back,” he said.
Chapter 7
Key Lime and Lavender
IN WHICH I TASTE
MATT AND I MOVED
into a dim one-bedroom apartment in Manhattan’s East Village in the winter of 2009. It was on the sixth floor of a walk-up, unreachable without the clump of boot on stair, out of breath as I rattled the lock and key. The apartment was a sublet and we would only live there for three months, but we were happy to take it while we searched for a permanent place of our own. Matt had just begun work as a newspaper reporter across the Hudson River in New Jersey, while I freelanced from home. Our bedroom window looked out over the concrete yard of a public school, where the joyful shouts of kids ricocheted across the street in regular twenty-minute blocks throughout the day.
Small and gloomy, what the apartment lacked in light was compensated for in smell. Some strong, others weak, and all of them old, the odors came accompanied by the musty damp scent of the radiator, which hissed constant steam in the air. It felt strange to live in someone else’s space: the drawers were filled with a stranger’s perfumed clothing and the closets with leather shoes that didn’t fit. There were corners of patchouli and lemon-scented cloth, different brands of dish soap and books I wouldn’t read. Matt and I scoured the apartment listings online, searching for something permanent, ready to make one our own.
During that cold, steam-insulated winter, Matt left early each morning wearing a blazer and a tie and came home late at night, tired and hungry. I worked in the dim light of the kitchen while he was gone. Through the window by my side, next to the mugs of coffee that I let grow slowly cold, I could see pigeons and flurries of snow. The solitude made me uncomfortable at times, and I escaped to the crowded coffee shop down the block until it was time to come home and cook. Matt and I ate dinner at 9:00, at 10:00, or a bleary-eyed 11:00
P.M.