Remembering Smell (21 page)

The loneliness felt by anosmics is not viewed as detrimental to their health. It's not viewed at all. Pundits aren't squabbling over whether a nose implant should be covered by insurance. Moreover, anosmics keep their problem to themselves. This is easy when no one else is inconvenienced by it. Easier still when even the anosmics don't know why food tastes awful and why they keep forgetting to turn off the gas. They suffer in silence and often in ignorance. Electronic noses do exist, but these contraptions don't look anything like a real nose. They're used to detect rotten meats and toxins in commercial settings. Few if any scientists foresee a time when a person with smell dysfunction will be able to strap on a bionic nose and smell again.

And that's not just because smell is a second-class citizen. There's a significant technical obstacle. The pathway for smelling, as we've seen, is widely distributed, with intricate wiring deep inside the brain, not just at the periphery. This makes it a far more complicated sense than hearing. Moreover, those cochlear implants used for deafness don't actually restore sounds in the familiar way. Patients describe the new sounds as highly unpleasant at first; their meanings must be learned with the help of a computer program, much as a blind person has to learn Braille. With meaning comes appreciation for this new auditory world. The ultimate challenge is to develop at least a little enjoyment of music.

The same is true for people who lose their eyesight at a young age. Recently, scientists unveiled the world's first electronic eye. When asked if it could cure blindness, they readily admitted their "eye" wasn't for humans but for digital cameras. It's one thing to treat glaucoma (once the leading cause of blindness) with drugs; it's quite another to replace an organ that has developed organically over the years in lockstep with its owner's experience. A man named Mike May, blinded by an explosion at age three, received a brand-new cornea in middle age. Years after the surgery he still couldn't recognize his kids. Mother Nature always puts a negative spin on novelty, and, sadly, May "saw" the world as ugly and chaotic, just as I smelled the world as ugly and chaotic when my nose was disjoined from my mind.

Joseph LeDoux explained that "in order to see an apple, instead of a roundish, reddish blob, the various features of the stimulus, each processed by different visual subsystems, have to be integrated." The cognitive aspects of pattern recognition were no longer available to May. His brain had long since rewired itself to accommodate other sensory inputs. May had been a champion downhill skier when he was blind; his new eyes destroyed his formerly superhuman balance and uncanny navigational skills. Now he couldn't manage the bunny hill.

For this same reason, science is more likely to come up with a Hummer that runs on air than a truly bionic nose. An electronic nose that detects the odor of rotten meat is a different technology altogether, as different from the human nose as a computer is from the human brain.

Smell dysfunction did spend a decade or so on the NIH agenda, partly because chemotherapy was destroying taste and smell in cancer patients and partly because new research had found that inhaled chemicals could cause disease. The discovery of the smell genes shifted funding priorities from smell treatment centers, like Richard Doty's, to genetics labs, like Richard Axel's. Molecular biology seemed more likely to solve "important" problems. The direction of smell research was quietly changed; some NIH-funded smell and taste centers were forced to close, and most other labs now rely on private investors.

Modern medicine is about treatments and cures. ENT doctors have ears and throats to worry about, as well as sinus conditions that may or may not cause smell problems. I was very lucky to have landed in Dr. Cushing's office. Few patients come in complaining to an ENT that their world smells like rotting flesh. Some internists and family practitioners aren't even aware that
anosmia
is the word for smell-blindness. Or that smell-blindness is something people get, like a cold, and that they can get it sometimes
from
a cold, sometimes from a cold remedy. Or from falling off a bench. Or from a car crash. Or from cancer. Or from Alzheimer's disease. More often than not, people with smell loss or distortion are referred to either a neurologist or a psychiatrist.

Many scientists have the same lack of awareness about smell. Richard Doty admits that he "sort of fell into" his line of work. He adds that he wouldn't make the same mistake again. Richard Axel says he doesn't think of himself as a smell scientist but as a gene splicer. Linda Buck recognized early on the medical-breakthrough implications of her discoveries, though curing smell dysfunction itself wasn't (and still isn't) on her to-do list.

In a curious twist of fate, the 1991 discovery of smell genes in humans was a setback for people like me, as olfactory science shifted its focus from studying human smell dysfunction to investigating the brains of anesthetized rodents, fruit flies, salamanders, and frogs. At the same time, high-tech tools like the gas chromatograph, the mass spectrometer, and the two-photon microscope accelerated the shift in emphasis from species behavior to cell biology, and functional MRIs made top-down research just as valid a method of inquiry into olfaction as reductionism. The high-tech tools also spelled trouble for smell psychologists: no need for B. F. Skinner's elaborate mazes when you can watch cause and effect in real time inside the brain itself.

Richard Doty opened the first smell and taste treatment center funded by the National Institutes of Health. In 1999, he was named one of the two thousand most outstanding scientists of the twentieth century. He was awarded the prestigious Sense of Smell Award in 2000, a distinction he shares with Trygg Engen, Gordon Shepherd, Richard Axel, and Linda Buck. The day after my visit to the Axel lab in New York, I took a train to Philadelphia. Doty's smell and taste treatment clinic consists of three small rooms in a classroom building, each one furnished with plastic chairs for patients, and bookshelves for Doty's writings and research articles.

I told him my story. He was well aware of the Zicam controversy and agreed that the FDA should do something about such products. He suggested some people I should talk to about smell, including a scientist at Cornell with Parkinson's who was investigating possible links between the disease and inhaled toxins. Doty sent me home with a free
UPSIT
(the University of Pennsylvania Smell Inventory Test, which rates the severity and specificity of smell loss) kit. It's still unopened—did I really need to confirm what I already knew?

Several months later I e-mailed Doty with a question concerning a treatment for congenital anosmia that I'd heard about. I mentioned a certain doctor who ran a smell and taste center on the East Coast, ostensibly no different from Doty's own although private and not underwritten by the NIH. Doty replied with a curt e-mail. Yes, he knew this man. The subtext of the message was clear:
stay away!

This East Coast doctor, Dr. R., as I'll call him, claimed to have come up with cures for both congenital anosmia and phantosmia, tackling the latter through a procedure that effectively puts the olfactory bulb out of service, stopping not only bad smells but all smells and ensuring that the patient won't ever smell anything again. To "cure" congenital anosmia, Dr. R. surgically transplants receptor cells from the tongue to the nose's receptor sheet and then exposes them over and over to certain strong odors until the relocated cells get the hint and—all hail plasticity—turn into odor receptors. Doty fumed: "Only a highly skilled neurosurgeon has any business fiddling around with brain tissue."

What about the testimonials from over-the-moon beneficiaries of the congenital-anosmia breakthrough? I asked in another e-mail. Doty patiently picked them apart, noting how often the restored "smells" could be attributed to sensations from the trigeminal, not olfactory, nerve. "I can smell mustard!" one said. But how could a person born with no sense of smell know the difference between an odor and the sting of a chili pepper? He pointed out that wishful thinking is a powerful force and that most of the patients spoke of their hopes for the future "if they just kept up the 'training.'"

I was reminded of Oliver Sacks's story about the man who willed his sense of smell back (or thought he had), and of Elizabeth Zierah, the anosmic who wrote that she was willing to try anything to restore her sense of smell. She finally scheduled a risky reconstruction of her sinus cavity. The procedure was dangerous and had a low success rate. She didn't care.

Dr. R.'s abstruse accounts of his experiments had been picked up by second- and third-tier journals (and then by the news media) that inadequately vet their articles, Doty complained. Such quacks also distribute their articles and testimonials on the Internet and any other place that is open to all comers. They refuse to return phone calls from serious reporters, he said, and suggested I give that a try.

Sure enough, my communication with Dr. R. ended almost before it began. After a few mysteriously missed phone connections, he told me to stop bothering him until I'd read his articles thoroughly and knew something about smell. I was wasting his precious time.

Where had I met this man before? Oh yeah, in
The Wizard of Oz.
Remember how angry the "wizard" became when Dorothy asked him unanswerable questions, and how he lost his temper completely when her little dog, Toto, pulled down the curtain to reveal that the mighty and terrible wizard was a fake?

One day shortly after this incident, I saw an online ad for the latest "cure" for smell dysfunction—neurofeedback. The pitch went like this:

If you suffer from loss of smell, ask your doctor about the use of neurofeedback in your treatment and rehabilitation. Once [you're] approved for neurofeedback treatment ... the therapist will ask that you sit quietly with your eyes closed. Placing electrodes onto the head, your therapist will send very small doses of electromagnetic signals to the brain, promoting flextbility and stimulating the brain to perform normal functions again.

These people were casting a wide net. Neurofeedback's alleged "success in managing complications of epilepsy, ADHD, autism and even juvenile offender cognitive processing" virtually guaranteed success in tangentially related areas. I was (briefly) tempted to give it a try for my insomnia and migraine headaches. As to smelling, neurofeedback promised that anyone suffering from "brain complications in the loss of smell may soon find their nasal receptors are re-activated." Or ... maybe not.

Alan Hirsch, the man who invented the diet aid called Sprinkle Thin (repackaged as Sensa in 2006), is the founder of the Smell and Taste Treatment and Research Foundation in Chicago. A fast-talking obsessive (it takes one to know one), he wears V-neck cashmere sweaters and drives a white Jaguar. Boundaries? Don't try reining him in; it won't work. He might dream up a cool experiment this morning and have it fully funded, staffed, and ready for liftoff this afternoon. He has written several books on smell for the popular audience, including
Scentsational Sex
and
What Flavor Is Your Personality?
He has no qualms about turning his scientific discoveries into fodder for
Oprah.
His colleagues consider him a respectable peer, if a trifle overzealous.

Richard Doty, who is as respectable as they come in this business, calls Hirsch (while grinning) "a very creative guy." Doty's own operation competes for dwindling grants from places Hirsch probably doesn't bother with, but because both spend most of their time on health issues related to olfaction, they were quoted at length in the same 2007
New York Times
article about products being developed for the early detection of Alzheimer's through smell.

Nick Kokonus, co-owner of the Chicago restaurant Alinea, told me his wife had lost "most" of her sense of smell in a car accident and was working with Hirsch to get it back, with some success. This obviously piqued my curiosity. What sort of person was this Hirsch? For one thing, he is board certified in both neurology and psychiatry. He got into smell because he had some ideas he wanted to explore. His original area of interest, human behavior, perhaps helped persuade him that he could parlay his findings on smell into a small fortune in popular books and health products.

I arranged to meet Hirsch at a coffee shop in the northern Chicago suburb where he lives. It was almost April now, six months and counting since I'd lost my sense of smell. I waited fifteen minutes and was about to phone him to see if I'd gone to the wrong Starbucks when a small, wiry man swept through the door carrying a bulging leather briefcase.

"Would you like me to tell you about my new diet aid?" he asked not thirty seconds into our interview.

I wondered if he'd noticed my pants were a bit snug. Hirsch has conducted hundreds of studies to get at the causes of both obesity and food preferences (the latter research funded by companies trying to spot trends in consumer behavior). Just as he doesn't mind selling his expertise to manufacturers that make things like corn chips and room deodorizers, he i sn't picky about where he's published. This accounts for the foot-thick stack of papers he somehow managed to extract from the briefcase and flop on the desk in the library cubicle we wound up in after Hirsch decided that the crowded coffee shop was too noisy for constructive conversation. I wondered if he wore cologne. He was so perfectly dressed for cologne, down to the gold chain on his wrist and the slicked-back hair, that I could almost catch the scent. English Leather? Brut? Are those even sold anymore? I decided not to ask about his cologne (which of course I couldn't
really
smell), even though this demonstration of the power of imagination to conjure up smells would have captured his interest. He might get other ideas. Ideas were clearly something this man got as easily as most people got colds.

An interest in why food tastes vary from person to person had launched another Hirsch project, one sure to grab a headline or two, maybe even land him a book contract or at the very least an article in
Chemical Senses
(a journal put out by Oxford University; its readers are about equally divided between academia and industry).