The last word: Robbed of all scents

There was nothing remarkable about the cold I caught. But a few weeks after I was otherwise back to feeling normal, my sense of smell and taste hadn’t returned. I went to my doctor, and he said I had a sinus infection, prescribed antibiotics, and told me not to worry. That was three years ago.

Since then, I’ve been to internists, allergists, and otolaryngologists, none of whom has been able to help me. They provided only a diagnosis—anosmia—the medical term for “you can’t smell anything.” The specialists thought my anosmia probably originated with a virus but had become chronic due to the severe allergies I developed after moving to Northern California. I began searching the Internet like a cyber bloodhound (at least I could sniff virtually) for the trail that would lead to my missing sense of smell. I tried nasal washes, nose sprays, herbal remedies, steroids, acupuncture, antihistamines, dietary modification, meditation, and visualization. A few worked for very brief periods, but nothing lasted.

In The Scent of Desire, an insightful recent book about the sense of smell, Dr. Rachel Herz points out that most people don’t much value theirs. She cites a study that shows people ranking the loss of various physical attributes and putting smell at the bottom. They considered it equivalent to losing a big toe.

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But in reality, Herz writes: “For those with this devastating condition called anosmia, everything changes. Our sense of smell is essential to our humanity: emotionally, physically, sexually, and socially.”

All you normosmics (that’s the actual term for those with a normal sense of smell) might think that’s over-the-top. But Herz is right. I lost normal function on the left side of my body from a stroke when I was 30, and although I’ve had a strong recovery, I still have limited fine-motor control in my left hand, I walk with a limp, and I can’t feel much on my affected side. Yet without hesitation I can say that losing my sense of smell has been more traumatic than adapting to the disabling effects of the stroke. As the scentless and flavorless days passed, I felt trapped inside my own head, a kind of bodily claustrophobia, disassociated. It was as though I were watching a movie of my own life. When we see actors in a love scene, we accept that we can’t smell the sweat; when they take a sip of wine, we don’t expect to taste the grapes. That’s how I felt, like an observer watching the character of me.

It’s clinically documented that acquired anosmia often leads to anxiety and depression. Just take a look at any online anosmia support group, and you’ll see thread after thread discussing how to fight sadness, frustration, and loss of sex drive. As Rudyard Kipling wrote, “Smells are surer than sights and sounds to make your heartstrings crack.” In extreme cases these distressing emotions can become overwhelming. The Scent of Desire begins with the story of Michael Hutchence, the lead singer of INXS, who hanged himself in 1997. Herz makes the case that Hutchence’s anosmia, which he developed from a blow to the head five years earlier, contributed to the severe depression that ultimately led to his suicide.

Hutchence “was a devout hedonist,” Herz writes. “Without the sense of smell, the temptations of food, the sweaty funk of sex, the essence of a walk on the beach, the feeling of nostalgia—the texture of life itself—were robbed from him.”

According to the National Institutes of Health, more than 200,000 people visit a physician each year for help with smell disorders or related problems. Although there are no hard numbers, doctors in the field conservatively estimate that 2 million Americans suffer from smell loss. The lack of treatments or cures, despite the prevalence, reflects anosmia’s many causes: viruses, head trauma, disease, aging, or psychological issues. Also, the sense of smell has only recently become the subject of serious scientific inquiry. Research began to take off after Linda Buck and Richard Axel received a Nobel Prize in 2004 for the discovery of the gene sequence for olfactory receptors. But consistently effective treatments for smell disorders remain elusive.

Taste and smell are intimately linked, so when I lost my sense of smell, I also lost my appetite. While the taste buds detect sweet, salty, sour, bitter, and umami, it’s the olfactory cells in the nose that allow us to appreciate the delicious complexities of flavor. My taste buds are in perfect working order, but without smell, each meal is a variation of sweet, salty, sour, bitter, or vaguely savory cardboard.

During the first year of adapting to anosmia, I lost 8 pounds because I had to force myself to eat. As I passed by my favorite fruits, vegetables, cheeses, or treats in the grocery store, I’d feel my usual surge of desire replaced by a jolt of frustration. I rejected food to punish it for letting me down. I heard plenty of jokes about how lucky I was not to enjoy eating from people struggling with their weight. Turns out, they were on to something. The company Compellis Pharmaceuticals is developing a nasal spray for weight loss that blocks the sense of smell and taste. To me, the thought of someone deliberately giving himself anosmia, even temporarily, seems sad and crazy.

What saved food for me, eventually, was texture, or “mouth feel.” Ben Cohen of Ben & Jerry’s, who has said he is anosmic, pushed his partner Jerry Greenfield to add bigger and bigger chunks to their ice cream. And voilà—a distinctive brand was born. Apples, which I never liked before, have become a treat while saucy foods like daal or coconut curry, which I used to love, feel mushy and repellent. I’ve come to appreciate sour foods such as lemon or tamarind because they don’t rely on subtlety to make themselves known in my mouth. Japanese food is the perfect anosmia cuisine since it’s so much designed around balance of tastes and variations of texture.

What’s the upside of my nonfunctional nose? The smell-impaired are often called upon to do those things their friends or loved ones dread, like changing cat litter, picking up dog poop, cleaning vomit-stained carpets after drunken parties. Useful, true, but not being able to smell yourself makes personal hygiene incredibly stressful. I’ve never read an account from an anosmic that doesn’t cover this embarrassing topic. Even after the usual grooming ritual—shower, deodorant, teeth brushing—I still have a nagging fear that I’ve missed something. What if I reek but don’t know it? What if I have something gross on the bottom of my shoe, and everywhere I go I leave behind a foul trail?

I’m not only dogged by the fear of stinking; I’ve also found that life is more dangerous. I’ve burned food and melted pots so many times I should be declared a walking fire hazard. Like most anosmics, I view any gas appliance as an archnemesis. I’ve become compulsive about making sure my gas stove is really lit when I turn the dial.

After three years of living with anosmia, I got a full reprieve for one aromatic week when I went back East in the middle of winter. Whether it was staying in a place that was completely devoid of plant life, or being at sea level (my sinuses have been appreciably worse since I moved to a higher elevation), or who knows what else, my smell and taste returned. I went home to California feeling reborn. I cried when I entered my house and smelled its familiar, welcoming atmosphere for the first time in years. Everywhere I went, I was greeted by glorious scents, from the musty smell of our car to the freshness of clean laundry. I reveled in the fragrance of soap, the inside of the spice cupboard, the coffee—ahhh, the coffee—my clothes, the sheets, my husband, and even my dog. The trip we took to the dump was wonderful. (Imagine being eager to take in the reek of rotting garbage!)

I was stunned by how much more engaged I felt in my own life. I noticed that being able to smell made me feel focused again. I was fully in my body, lighthearted with a clear, keen mind.

Then it began to slip away. I tried not to panic. But one day, in the middle of a cup of coffee, smell vanished. I tried to convince myself it was no big deal. At least I’d had a vacation from anosmia for a week. But I quickly plunged into a despair that sapped all my energy. I wanted to smash my useless nose against the wall.

I’m still searching for a cure. I recently read about sinuplasty, a relatively new procedure that opens blocked sinuses with a thin balloon similar to the one that’s used for angioplasty. I’ve made an appointment with a specialist to see if I’d be a candidate for the operation. And despite my town’s horrible housing market, we’ve made the decision to move because of my allergies. When the real estate agent came by to see the property, the first thing she said was, “Wow, your roses smell so good! And that jasmine …”

When I explained my situation, she looked at me with a mix of pity and incredulity. “You really can’t smell them? But they’re so fragrant!” I knew then that moving was the right thing—if it allows me to regain my priceless sense of smell.

Originally published by Slate.com. ©2008 Washingtonpost.Newsweek Interactive. Used with permission. All rights reserved.