What it’s like to navigate the world when your senses conjure up phenomena that others can’t perceive

Illustration by Brian Stauffer
Illustration by Brian Stauffer

I’ve had tinnitus—a constant ringing in my ears—throughout all my knowing life, my inner ear conducting its own private symphonies in the bony amphitheater of my skull. I hear a constant hissing-swishing sound like water dissolving an antacid tablet, a noise that can progress to trilling, beeping, or shrieking as loud as microphone feedback, depending on tiredness or viruses or the whims of the ear gods. These sounds are not just annoying to listen to; they block out the real-world sounds around me. They have been so much a part of me that until I was a teenager, I presumed that everyone had such busy ears.

When I was five, an audiologist came to my school to carry out hearing tests. The beeps and squeaks from the audiometer sounded so like my own ear-clamor that I came to believe that the noises in my ears were in some way linked to this contraption, that wires or rods had been accidentally left in my ears and had burrowed their way inside my head. When I was six, I was scheduled for an operation to fit grommets in my ears, but my parents decided not to risk general anesthesia on such a small brain and canceled the surgery. Instead, I was made to blow balloons to open up my blocked ears: blowing, letting the air out, and blowing again. I’m not sure this achieved anything. I link my early bookishness to having poor hearing. Trying to keep up with other people’s spoken words could be tiring, but total immersion in a book was like being coated in polystyrene packaging. I could reread words I didn’t catch the first time and tune out rather than attempt to decipher the smudgy sounds around me. As a child, I wasn’t aware of what I couldn’t hear, so my tinnitus was only a problem for the person I was ignoring. A public health nurse who visited our home queried whether I was autistic; I was so engrossed in a book that I hadn’t responded to repeated shouts of my name.

When I talk loudly in places with lots of background noise, my words crackle and echo in my ears like a bad phone connection. In large group conversations, I struggle to keep up, never mind join in. It can be isolating to miss nuances and subtleties, nudges and whispers. Jokes fall flat unless they’re said loud enough. Under-the-breath comments are wasted on me. There are only so many times I can say, “What?” before the moment is lost. I dread conversations with the masked and the mumbling. Differences between p’s and b’s, s’s and f’s are indecipherable if the mouth isn’t visible.

Missing the first few words of any conversation means that I spend the rest of it trying to catch up, and the puzzle increases exponentially. I often assume what a server or retail assistant will say next because these conversations usually follow a set pattern, but when they veer off course, my guessed response can be daftly irrelevant. I pick out key words in a question to piece together meaning, and predict the probability of being asked certain questions in a certain order. It’s the same technique that I use for conversing in an unfamiliar foreign language. Years ago, when I lived in Japan, the first question from a Japanese person would often start with doko—“where”—so I would answer with the Japanese word for Ireland. The second question would start with itsu—“when”—so I would answer with the Japanese word for March, the month I had arrived there. This gave me a reputation for having more Japanese than I had, in the same way that most people don’t know how bad my hearing is because of my constant compensatory efforts. Before a recent hearing test, an audiologist reassured me during a brief conversation that my hearing seemed fine. After the test, she expressed her shock at how poor it actually was.

Tinnitus means I hear things that don’t exist. The sounds are real to me, they exist in my subjective reality, but they cannot be heard by others. I have never experienced auditory hallucinations in the form of voices, but my wordless noises feel so real, I can understand how someone might hear words and believe them to be an objective reality. In The Rag and Bone Shop (2021), Veronica O’Keane, a psychiatrist and neuroscientist at Trinity College Dublin, describes how postpartum women experiencing psychosis

hear voices that are not audible to others, may smell odours—usually unpleasant—that are not coming from the outside world. … Such auditory [and] olfactory … hallucinations are referred to as psychotic symptoms. The first principle that we need to establish is that what are called symptoms are real sensory experiences. Hearing a sound, a human voice, is a subjective experience, whether the voice originates in the outside world or is generated in the brain by pathological neuronal firing. The experience of hearing the voice is similar in both cases: the origin of the sensation is a separate consideration.

There is a dignity to this approach that I like. It must be difficult enough to deal with the fact that your reality does not exist for other people, but to feel that it is relevant and that your experience is credible is reassuring. If only people experiencing chronic pain or chronic fatigue with no visible symptoms could get the same acknowledgment from the experts.

My hearing is so poor at high frequencies that I can’t even hear when my children are whispering in my ear, never mind what it is they’re actually whispering. Soft voices at low levels are unavailable to me. And yet, after my first child was born, I began to interpret anything at a certain high pitch as the sound of my baby’s cries. The noises were real and external, but their source was not as I imagined. Seagulls shrieking, cats mewling, car brakes squealing, even the scraw of metal on metal can be heard as a baby if that’s where your brain is. For years, my physical response was to leap up and rush toward the noise, but I learned to tell my brain that it wasn’t a baby, in the same way I now automatically discount internal shrieks and hisses and beeps and know them as tinnitus. The problem with this conscious reinterpretation of what I hear is that occasionally there are real, external beeps and hisses that I assume are my own private noises.

In childhood, my eyesight was below par, but as with my hearing, I learned to compensate. When I was 12, a nurse visited the school to test the students’ eyesight. We were brought in groups to the staff room, where an eye chart had been placed at the end of a long table. I angled myself into last place so that I could listen to the full-sighted children before me reel off the letters. In this way, I was able to memorize the last few lines of the chart. I got away with it—but what did I get away with? I managed to avoid a prescription for the glasses I objected to. But this meant that the rest of my schooldays were spent peering at a blur of chalk shapes on the blackboard. I learned to guess at the meaning of a sentence from the few words I could squintily decipher, in the same way that I guessed at what words had been spoken from the few words I could catch.

I got so used to living in a blur that when I got laser eye surgery in my 30s, I was perplexed by the amount of detail that had presumably always been in my surroundings. The day after the procedure, I looked out the car window and saw, for the first time from such a distance, individual leaves on trees. I had only ever seen blurry lollipop tree shapes from a child’s drawings, and suddenly here was high-definition detail that had been right there all along. That night, I looked out the window and saw stars actually twinkling: so this was what the nursery rhyme had been on about!

Watching a film in the cinema was now an exercise in overstimulation. I found it hard to unfocus from the details and couldn’t keep up with chase scenes in action movies because I would home in on the wrong things. I used to be swept along by a vague rush of movement, but now I wanted to pause and examine the details. Perfect vision brought self-consciousness, however. Seeing imperfectly means you assume that others see what you see, which allows you to exist in a mythical, nonjudgmental world, unseen. Walking up a busy shopping street for the first time postsurgery, I was intimidated by how close the other people were and how much eye contact they made. I preferred to think that people saw as little of me as I did of them. The ground felt too close. It seemed to rise up to my knees, and I found myself taking exaggerated steps, as if I were walking up a flight of stairs. Being naked in the public baths and hot springs of Japan had been fine presurgery. Feeling so unseen was both comfortable and liberating, and because this was a time before phones had cameras, I wasn’t screen-seen either.

Similar to tinnitus, laser eye surgery added impediments to my vision by introducing things that existed only in my head. A too-bright halo now appeared around lights; looking in the general vicinity of a light meant I couldn’t see around it. If I tried to flag down a bus in the darkness, I struggled to see the number of the bus if it was near the newly haloed streetlights. Also, the surgery seemed to introduce dark maggot-size shapes in the periphery of my vision. Switching from near sight to far sight brought on a bout of the maggots, which were hard to ignore at first, but I learned to forget about them. If I’d had this surgery as a child, I probably would have explained the maggot shapes by assuming the scalpel had implanted them in my eyes.

All of this made me think of Morgellons disease, described by Leslie Jamison in her 2014 essay collection, The Empathy Exams. The Mayo Clinic website defines Morgellons disease as “a condition characterized by a belief that parasites or fibers are emerging from the skin.” How quietly devastating that it is the belief that constitutes the disease, rather than the physical skin condition. I have never gone to a doctor about my tinnitus or the maggoty shapes in my vision because I don’t want to be seen as a person whose subjective, unmeasurable complaints might be questioned as symptoms of a mental illness or an appeal for attention. I need to reserve my credibility for ailments that matter.

When I thought I had recovered from my first bout of prevaccine Covid, I woke one morning to find my sniffers were defunct. For almost a month, I smelled and tasted absolutely nothing, not even my own breath. Then, as my olfactory neurons started pinging back to life like a phone hopping back onto Wi-Fi, neurons misfired and certain smells were swapped (apples for blood, for example, chocolate for metal, tea for flowery grass). One night, I caught a sudden terrible smell, and I ran upstairs not quite sure what I’d find or where I’d find it. I thought perhaps the toilet had overflowed or foul water was leaking from a pipe or drain. I couldn’t locate the source of the stench, an evil mixture of sewage, rotten egg, and stagnant floodwater that was without form or name. That was the start of the phantom smells, or phantosmia. Phantosmia was a sign of my olfactory neurons beginning to recover, but this imaginary vile smell was blocking my chances of experiencing real and potentially pleasant smells.

I like that the word phantom is used. There are ghosts in my ears, spooks in my nose, tiny wraiths in my eyes. There is something Halloweenish about these things that don’t exist and yet are very real to me.

Around this time, I had an uneasy dream about a creaky old house with several stories of rotting, reeking floorboards. The stink in my nostrils persisted for hours after I woke—I couldn’t shake off the dream. It was the first smell-dream I can remember, where the smell was the main feature of the dream and carried over into my waking life.

A common feature of phantosmia is that sufferers (phantosmics?) are unable to identify the specific smell, or the smell may be one that they have not encountered before. This was true for me: I couldn’t put it into words, only that it was really dreadful, the worst combination of the worst smells I could imagine. I don’t think an adequate vocabulary exists for smells. Could there be another way besides language, which is ineffectual, to describe smells? Could you describe a smell with touch, for example, or with images?

My nose hasn’t yet fully recovered. Certain aromas have muted themselves, and some tastes are still off. My new, dulled sense of smell is like the padded silence of hearing loss that accompanies a bad cold or sinus infection, as if snow has packed tight around my head. I currently have 60 percent hearing loss at high frequencies, the frequencies at which my tinnitus operates, and what my ears lack in the perception of real sounds, they make up for in creating imaginary ones. A couple of bouts of Covid have intensified my tinnitus: the constant hiss and swish is tolerable, the fridge-motor hum is bearable, but the sudden unexpected switch of frequencies to a frantic wheeeeeeeeee is harsh. Some nights it feels like an ensemble of amateur tin whistle players is tuning up in my head.

Increased ear drama combined with decreased nose action can make me feel withdrawn from the world, in a bubble of my own with my own personal sounds and smells. This leads to overcompensating, looking for things that might be there and trying to ignore things that aren’t there but sound like they are. In my complete-smell-loss days, I couldn’t detect the smoke of a tea towel burning on the toaster and realized there was a fire in my kitchen only when I saw the flames. Since then, even though my nose has mostly recovered, I look closely at foggy or denser patches of air. The knowledge of my decreased awareness informs so much of my life: I know to obsessively check for cars when I cross the road because I’m used to bockety hearing, but I can forget and assume my smell is reliable. It takes work to engage with a world that is not fully available to you, and humility to acknowledge your reality is not the reality of others.

I see phantosmia as the olfactory equivalent of tinnitus, hearing things that don’t exist and not hearing things that do exist, smelling smells that are not real and not smelling smells that are real—to phantom up sounds and smells and either believe them to be real or know that they’re not real and yet still have to smell them and hear them and deal with them as some form of reality. I like that the word phantom is used in a medical context to describe these illusions or delusions. There are ghosts in my ears, spooks in my nose, tiny wraiths in my eyes. There is something Halloweenish about these things that don’t exist and yet are very real to me.

I have a notion that I read and wrote as a child, or that writing came to me, because of my deficient senses. I can’t know otherwise, but I don’t see how it couldn’t add to an inner life. When I set out to write this piece, I thought I would be able to delve into the implications of living with phantoms and explore how exactly this has affected my imagination, but it’s only in the writing that I realize I have no other way of being for comparison. I have a fantasy about taking a magic pill that would allow me to live other people’s experiences from the inside out, to feel their sensations and pain and view the world from their perspectives, to compare this experience with my own. I would like to know what perfect hearing is like, to be in complete tune with my environment, to smell what is actually there. But I cannot remember myself back into my pre–laser eye surgery days or pre-Covid sniffer days or imagine myself into full hearing. I can only know myself as I am now, slightly off-kilter with the rest of the world.

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Caitriona Lally is the author of the novels Eggshells and Wunderland. She won the Rooney Prize for Irish Literature in 2018 and a Lannan Literary Fellowship for Fiction in 2019. She is employed as a cleaner at Trinity College Dublin and is working on her third book.


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