Smoke Signals: Notes on Phantosmia

Outside, someone was smoking. The stink leaked in around the closed front windows. It stung my eyes as I sat in my partner’s living room in an easy chair, slogging through a work task. This has been my setup for the better part of the past year: balancing on the tightrope between productivity and rest. Pillows, lap trays, things to hold my feet up. Sunlight. Headphones. Pomodoros.

I tried to ignore the smell but it grew stronger. I glanced out but couldn’t see anyone outside. The place is nestled in a cohousing community with a small group of neighbors. Some may light up the occasional joint, but no cigarette smokers. 

So it must be someone delivering a package. Or working on a neighbor’s gutters.

The smell persisted. An hour? More? I kept working and the reek kept lingering. No voices, no sound of hammering. Just birds and crickets, and as far as I know, none of them have taken up smoking.

I closed my laptop and walked outside. The odor was still there. Not a soul in sight. It was following me now, the cloud of yuck. In my clothes? On my breath? It had festered into something dirtier. The wet, foul smog that hovers around the smoking area outside a hospital, crushed butts and old charred tobacco.

I asked around. No one else smelled it. 

It followed me home that evening. I showered. Changed clothes. Ate dinner. Brushed my teeth. Nothing scrubbed it from me. For three nights and three days, the paste of ashtrays and old cigarettes coated the insides of my nose and throat. I could taste it on everything. Then I woke up on the fourth day and it was gone.

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Phantosmia it’s called. Fan-TAAHZ-mee-ah. Sounds magical. It sort of is. Phantosmia is a phantom smell, also known as an olfactory hallucination. It can be triggered by straight-up nasal issues like sinus infections or colds. But can also be a neurological phenomenon from a traumatic brain injury, seizures, or migraines. Or Long COVID.

Phantosmia is rarely kind. While someone out there may be smelling hot cocoa or cinnamon buns, most who experience phantosmia are facing down fouler stuff. Rotting garbage, burning rubber, chemicals, gasoline, sewage, cigarette smoke. 

Neurological phantosmia could be rogue neurons or malfunctioning brain cells. Or some other poorly understood mechanism. Anyone who has even a passing familiarity with Oliver Sacks knows that the brain is a labyrinthine marvel that can go sideways in the most bizarre and fascinating ways. It only takes a small miscalculation to throw off the whole complex circuitry. 

Some people with Long COVID have been dealing with phantom smells, or total loss of smell, for months or even years. While it may not be the most debilitating symptom, it does unsettle things. Senses are supposed to make it possible to perceive the world in order to move through it, and to respond to stimuli appropriately. When the senses misfire, reality starts to slip. How does someone calculate threats, toxicity, extremes, or the simple relationships between objects, when the senses send garbled messages?

Our experience of the world is not a direct reflection of reality, but a subjective and filtered perception.

Gerald Edelman

That first experience with phantosmia in my partner’s living room was in July, about a year into my LC journey. A month later, it happened again. Exact same way. Mid-day, at his house, doing a work project in the easy chair. Again, my mind simply told me someone outside was smoking. It took me an hour or so to register the absence of a source. The smell stuck around three days before fading.

It gave me a break for a while. Then last weekend, friends invited me for an afternoon gathering at their house. I was sitting on the sofa chatting. A few guests arrived. One of them had clearly been smoking cigarettes.The wave of stink that came in when the group walked in was unmistakable. It made my eyes water. It lingered in the living room. Trying to be polite, I didn’t say anything.

It wasn’t until I was back home that evening trying to eat dinner that I realized the burnt tobacco sludge was coating my nose and throat again. My brain had turned me into an ashtray. That’s when it occurred to me that none of the friends from the party are smokers. Fooled again.

The brain is not limited to processing information, it actively constructs our perceptions of reality.

Gerald Edelman

In every instance of phantosmia I’ve experienced, imagination seemed to act as quickly as perception. My mind developed a narrative before consciously registering the smell, smashing  together a story in a fraction of a second. “Outside the house, someone is smoking.” That story hung out in my mind as a truth for quite some time before I picked up on the incongruity of a smoke-filled house with no smokers. It was only when faced with the facts of the situation – there is no one outside, there is no smoker at this party – that the narrative collapsed.

It makes me wonder how much of a life is made up of thinly stitched narratives. How many holes does the mind fill so that nonsensical things make sense? How hard does it work to make the ground appear solid enough to walk on, even when it is not?

When the narrative structure starts to reveal itself as a stage set made of crepe paper and string, it becomes hard to even make simple decisions. Fixedness slips and everything becomes suspect. 

Every act of perception, is to some degree an act of creation, and every act of memory is to some degree an act of imagination.

Oliver Sacks

I have racked my brain to identify links between these instances of phantosmia. The urge to impose causality is almost instinctual. Was there a food, drink, or medication common to all three instances? A song or gesture or change in the weather? Had I had the same dream the night before?

Is phantosmia a symptom of an underlying system that’s gone awry? Or is it a trigger for something that’s about to go off the rails?

Is the smoke a signal? And if so, how to read it?

I posed the question to my online LC group. Ones writes, “I’m a bookkeeper and we’re 5 days from the last tax deadline so I’m under a lot of pressure, and sure enough, I’ve been smelling cigarette smoke for over a week.” 

Another says, “When I am stressed I get this sharp metallic smell in my nostrils… It’s always a warning for me to sit down and de-stress. It usually means – if I push through – that I am about to have a flare up.”

This third bout of cigarette stink has been with me a full week now, the longest stretch yet. The story shifts. My mind is already hard at work on a new narrative, separating the odor from external causes and realigning it with something internal. Imagination is a busy little bee, stitching together a story of causes and messages. Like my fellow longhaulers who read signs into what could be pure randomness.

I too desperately want this to hang together. To be able to say, “Cigarette smoke = impending flare-up.” I want to trust my faulty brain again. It’s no longer sensing external things accurately, but it’s a good brain, right? It must still be sending me reliable signals. 

I’m afraid, however, that it won’t be so easy. When multiple systems of the body are under attack from a mysterious illness, the old relationships between sensations and meaning judder and shift. Not just once but constantly, many times a day. I’m grasping for purchase as the formerly solid ground under me roils like the sea.

Maybe my phantosmia is a sign I need to rest (can’t go wrong with rest!) so for now I’ll hold onto that possibility. But my grip will be light. I need to be ready to let go and rewrite the story yet again.