The Absence of Scent
To Smell and Back Again
My hair stood on end when I first read the news. Hidden among the slow-rolling articles about COVID-19 in early 2020, I noticed an obscure headline in one of my news threads about patients in the Kirkland, Washington nursing facility losing their sense of smell. The Kirkland facility was at the epicenter of the coronavirus outbreak in the United States with the first death and the first infected health care worker in this country. These patients with loss of smell symptoms were originally reported on February 29, 2020, but it wasn’t until April of 2020 that the World Health Organization surfaced the news, declaring this symptom to be rare. By May, reports began to appear stating that it was a common occurrence.
This kind of freaked me out! When I read that initial headline in February, I hadn’t been able to smell for almost 10 years. Now, all of a sudden there was the potential of people all over the globe experiencing this unusual condition. I started to wonder how I would know the difference if I got infected? Yet another danger warning missed by not being able to smell.
Anosmia. That’s what it’s called. The inability to smell. Here’s a crazy thing, while hearing loss, vision impairment, and feeling/sensing limitations are all considered disabilities under the American with Disabilities Act, loss of smell is not, despite the serious safety issues it creates.
I lost my sense of smell after cancer surgery in 2010. The tumor growing between my eyes and into my brain required that my surgeons remove my nose in order to cut out the tumor. An ultimate case of cutting off one’s nose to spite the face! My doctors assured me there was no reason I wouldn’t be able to smell once my olfactory nerves healed because they’d been able to save my olfactory receptors.
Lucky for me, these symptoms were temporary at first. It turns out the olfactory nerve regenerates faster than any other nerve in your body — in just 42 days. Lo and behold, 42 days after my surgery my smell came back.
Then came radiation. Halfway through my six weeks of treatments, I lost the ability to smell again, and with it, a vast alteration of my sense of taste. Many people with anosmia have altered taste, including COVID patients. Once more, 42 days after radiation ended, my smell returned along with my taste and I was able to enjoy anew my favorites like coffee, wine, and ice cream.
But then I got on a plane. Six months after my radiation treatments I flew from California, where I lived at the time, to visit my parents in Jacksonville, Florida. The combination of my surgery and the devastation from radiation treatments left me with a few additional challenges. The various drainage systems in my head were not functioning as they should. My tear ducts closed which caused water to stream down my face when my eyes teared up, and the tubes leading into my ears collapsed, leaving me susceptible to having my eardrums burst when I flew — so I used a strong nasal spray as my doctor directed to avoid this dangerous hazard. It turns out, under certain circumstances, nasal spray can cause you to lose your sense of smell. So when I returned from Florida that September I once again had lost mine. I counted 42 days. Nothing. Days turned into weeks. Weeks turned into months. Months turned into the eleven years I have now been smell-incapable.
Here are a few things that make the inability to smell dangerous:
1. Not being able to detect smoke — sure you can have smoke alarms in your house but what about everywhere else you venture?
2. Not being able to detect the smell of gas. Gas leaks can not only make you sick but they can cause explosions. I live in a rural area now with no gas lines to my house, but what about other toxic poisons?
3. Spoiled food. I’m sure I’ve thrown a lot of money down the drain (technically, into the compost bin) because I am religious about tossing out food on its “sell” or “use by” date or if it looks the slightest bit “off.”
An anosmic also misses out on experiencing emotional triggers from nostalgic scents, like smelling a perfume that brings back good memories. For me it would be something else as I developed an allergy to strong perfumes long before I lost the ability to smell them — I blame this on my over-use of Jungle Gardenia when I was a teenager. But there are other feel-good scents I miss, like English roses, Costa Rican coffee beans, and Bordeaux wine. It makes me sad that I missed the newborn baby scents when my grandsons were born.
Just How Many of Us Are There?
I wonder how many people have anosmia? The most recent data I found shows that for approximately 95% of COVID patients who lost their smell it returned within 2–3 weeks and of the millions who lost this sense, many have not regained it. It will be interesting to see how much COVID changes the overall percentage of people with anosmia, which was estimated to be about 1% of the population before the virus.
Looking for the silver lining here, the increase in people with chronic smell loss has prompted scientists and researchers to give it more attention, and perhaps this will lead to breakthroughs in finding a cure.
A Few Famous Anosmics
They say there is comfort in shared experiences. I don’t about comforting, but I did find it interesting to discover some well-known people with anosmia.
Bill Pullman. The actor fell during a rehearsal when he was 21 and spent two days in a coma with a head injury that caused him to lose his sense of smell.
Ben Cohen. Ben has had a limited sense of taste and smell since childhood. His enjoyment of food comes from its texture, which explains all the ooey-gooey crunch and chewy textures in Ben & Jerry’s ice cream.
Jason Sudeikis. Yep, that’s right. The Ted Lasso writer and actor can’t smell. This is what he told Jimmy Kimmel in a 2013 interview when he talked about being born with anosmia:
“You never notice it as a kid, because smell is only pizza and farts. And then at some point you get older, and after puberty people start complaining about the smell of your feet and you’re like… ‘I can’t smell it.’”
Perrie Edwards. The Little Mix singer was also born with anosmia.
“People are always like, ‘Oh, isn’t that really horrible?’ and I’m like, ‘No’ because I’ve never known what it’s like to smell. If I’d had it and then it disappeared I’d be like, ‘Argh’.”
Going on a Smell Walk
In 2017, I attended The Future of Storytelling Festival on Staten Island, a showcase of immersive storytelling exhibitions and programs. There were interactive installations, panel discussions, and live theater to sign up for each day. One installation was called Smell Walk. The exercise involved walking around a pre-determined path at the Snug Harbor Cultural Center & Botanical Garden, where the festival was held, and describing, then mapping, the smells. The Smell Walk was an experience tied to a larger long-term New York City Smellmapping project. The idea was to learn to collect information through our noses rather than using other senses.
The description in the handout read: “Unlike our eyes, we can’t close our noses. We breathe 24,000 times a day immersed in smells, but only paying scant attention. In order to detect every nuance, we would need to live for 114,155 years acknowledging a smell every breath in order to encounter them all.”
I had to check this out! Before signing up, I talked to Dr. Kate McLean, the woman leading the exercise, and explained that although I could not smell, I wanted to observe. I had anosmia for eight years by then and one of my biggest frustrations was our lack of language for describing scent so I was curious to hear what people came up with. She loved this idea and we informed the group about my anosmia before starting our walk.
My own experience has been that people bring up smells quite often, but they don’t describe them well. Usually, it’s just to comment that something smells some condition of “good” or “bad.” Sommeliers, Perfumers, and marketers of scent-based products are trained to use more descriptive language but even then it’s usually by comparing smells to other things. A wine’s nose might be earthy, citrusy, or buttery; perfume could be floral or musky; soap is often described by its ingredients like lavender or vanilla. At least I have scent memory of such descriptors — I imagine even these are not helpful to a congenital anosmic.
I’ve had instances in group settings where I mention this frustration with language and someone in the group decides to take the challenge and attempt stronger characterizations for the scents around us. Such was the case on that Smell Walk — a young man took time at each of the 12 stops on our walk to come up with language to help me experience the scents. I love when this happens! It helps keep my scent imagination alive.
If you’re an anosmic or know someone who is, here are some resources to check out:
The Smell and Taste Association of North America: A patient advocacy group for smell and taste disorders.
The Smell Podcast: A podcast created by Katie Boateng, an acquired anosmic, that explores all things related to smell.
Monell Center: Scientific institution dedicated to research on the senses of taste and smell.
