Many people believe that once we become unconscious during the process of dying, the sense of hearing is the last thing we lose. A recent study at the University of British Columbia lent some credence to this long-held belief. The researchers used electroencephalography (EEG) to record brain activity in response to sound from two groups of study participants: a healthy, conscious control group, a dying-but-still-conscious group receiving hospice care, and the same dying group after they became unresponsive. They found that several of the dying patients’ brains showed responses to auditory stimuli that were similar to the control group, even when they were literally at death’s door.
It’s this fascinating quirk of the human body that leads loved ones to sit for hours at the bedsides of the comatose and dying, chatting with them or reading to them, all with what research is indicating is the valid hope that their voices are reaching through the fog of unconsciousness.
But what does it mean when this supposed natural order ruptures and reorders itself? If the last thing we’re supposed to lose before we die is the ability to hear, what does it mean when our hearing goes first?
I suppose it could mean one of several things: too much exposure to loud sounds, old age, an infection, an injury, a hereditary malformation, to name a few. I got no such explanation two years ago when I lost all hearing in my left ear, only the word “idiopathic,” along with weeks of steroids and a normal-looking MRI. I’m dying in reverse. Piecemeal, but fighting every step.
No wonder I’m obsessed with zombie and vampire stories — the undead and the reanimated have held a fascination for most of my life. My childhood was filled with strange dreams and visions; I grew up sensing things that no one else could and experiencing déjà vu on a routine basis. I couldn’t have known then that parts of me would join the unavoidable transit toward death so far ahead of schedule, nor that I would claw against it with so much urgency, but that’s where I landed and where I hoist my battle flag. Like Persephone in the Greek myth, I surface from this puzzling-yet-familiar underworld every so often, only to get recalled as soon as I start to forget what I am: the main character in a warped superhero origin story.
This is my hill, and I’ll be dying on it.
I’m no stranger to hearing loss. I grew up with a dad who developed conductive hearing loss as a child. From the time I was old enough to carry on a conversation, I understood that my dad couldn’t hear me if I addressed his right side. Looking back, I wonder how many times he just smiled and nodded or offered a passive “mmm-hmm” without ever knowing what I or anyone else had said to him.
The man had issues. Enough, as the wry insult goes, to open a newsstand. His issues were the vertebrae of a generational curse visited upon my brothers and me; a curse that was likely passed to him from his parents. After all, these things are difficult to isolate. You can pick up the scent of it only to meet yourself turning inward in an ever-tightening spiral until you’re so dizzy your body finds the ground before your eyes do.
Part of my father’s pathology (characterized as narcissistic personality by some of the therapists I’ve visited since the age of 19 in my own quest to break the curse) involved embellishing the truth and rewriting history — his own and that of the people in his orbit. If there were reliable witnesses to a particular event, it was easy to spot his lies in the retelling. But if the witnesses were absent or their perspectives otherwise lost, we learned to take everything Dad told us with a grain of salt, or several.
One story he told was the tale of how he lost his hearing in his right ear. I find it hard to believe that he embellished this one much because it doesn’t make him look particularly smart or talented, but I’m putting the saltshaker on the table anyway because I have no way of knowing for sure. He told us he went swimming in a drainage ditch as a boy and developed a severe ear infection, or perhaps a series of chronic infections. The result was that one or more of the auditory ossicles in his right ear (those three tiny bones that move sound from the eardrum to the cochlea and on to the auditory nerve) fused or malformed somehow, and sounds could no longer travel past his eardrum.
When he was 66, he underwent surgery to replace the malformed ossicles with artificial ones and restore hearing but I’m not sure how much good it actually did. He had refused a hearing aid for decades because he didn’t want to look old. This surgery was probably attractive to him because it meant he wouldn’t have to wear any visible external equipment, but he struggled post-operatively with certain sound frequencies and volumes.
When I lost hearing in my left ear, almost one month to the day after his death, the spiritual, woo, it’s-all-connected part of me wondered if my dad was playing some nasty joke on me from the other side. I wouldn’t put it past him — he was as mean as he was dishonest. While I struggled with vertigo and almost unbearable tinnitus, I mumbled curses under my breath and screamed at him in my heart.
I learned later that my hearing loss was different from his in two major respects: one, mine was sensorineural, not conductive, meaning a different part of my ear had failed — the cochlea. And two, there was no obvious explanation for mine. No infection, injury, excessive loud noises, or acoustic neuromas. The official diagnosis was idiopathic single-sided sensorineural hearing loss. As Clayton, the otolaryngology PA who took care of me during those first weeks explained, “we call it idiopathic because we’re idiots.”
In the time since my left cochlea stopped working, I developed a level of empathy for my dad that I never had before, because single-sided deafness is brutal. Sound plays tricks on you, and exhaustion becomes the norm because the brain suddenly has to work twice as hard to process input from the still-working ear. The experience transformed me into a walking buzzkill, and I began to understand at least some of what made my dad so combative and cruel.
Unlike my dad, I refused to let vanity dictate whether or not I took advantage of some pretty impressive medical technology; a cochlear implant in my case. In fact, I went to the mat to get
one, fighting with insurance company drones who think having one working ear is the same as having two. I wear my external processor on my head with pride and leverage my experiences into advocacy for the disabled. Many in the Deaf community view cochlear implants as cudgels that are weaponized to enforce conformity; a tool of a lazy majority that refuses to help move the world toward greater inclusivity and access. I stand in that breach: I’m learning American Sign Language, I’m asking hard questions, and I’m pointing out accessibility gaps wherever I see them.
I refuse to use my powers for anything other than good.
Jeanne Sharp (she/her) is a writer who has done everything but write for most of her adult life. She lives in the desert and can be found on IG at @that_jeanne or Twitter at @sharpwritings