My Cochlear Journey, 2
It is two days since the surgery on my left ear at Ruby Memorial Hospital, and I feel rough. Really rough. I just want to sleep and for the ache deep in my ear canal to go away. But it is impossible to get comfortable, let alone sleep, with this bulging, plastic protective dome strapped to my head like a head mirror/headphone combo.
This morning, after the prescribed 48 hours of wearing the dome, my wife removed it, revealing the incision behind my ear and big, itchy bump on my skull.
The sleepless nights gave me time to reflect on the journey thus far, from that fateful prank in a Conneaut sunporch to being wheeled into an operating room knowing that what little bit of natural, residual hearing that still existed in my left ear was about to be eliminated.
As a baby boomer, it would be somewhat comforting to know that I had injured my hearing by sitting front row at too many rock concerts in the 1970s and ’80s. That has not been the case; I’ve never been to a rock concert in my life, and the one concert I did attend, Alison Kraus and Union Station, we were so far away from the stage, any petite woman with a great voice could have been down there on that little block of a stage.
No, my hearing loss came into this world with a bang and went out with the whisper of “I love you” from my wife.
At least that’s what I think she said. For years I have been guessing at what folks said. That’s not good for someone employed as a print journalist. I left journalism in 2013 to work as a lodging tax administrator and cultural heritage tourism worker for Ashtabula County. Communication in that job was largely telephone based. I remember remarking to the county’s tech guy that something was wrong with the cord on my phone; when I stretched it so I could hold the handset to my left ear, the volume went way down. The fault, of course, was not in the phone. I was going deaf in that ear.
I decided to seek professional help and had a hearing test in one of those isolation booths where you have to raise your hand each time you hear a tone in one of your ears. The tinnitus makes it especially challenging, because you hear tones all the time and have to rack your brain trying to figure out if its real or tinnitus? And then comes the worst part: Repeating sentences in both silent and noisy backgrounds. Had I performed in school as well as I did on those tests, I’d still be doing first grade.
I heard nothing above 2 Khz and very little from 1K to 2K. The left ear was the worst. I asked about hearing aids, but the audiologist said only the most expensive ones could help.
What most people do not understand about hearing aids is that while they can amplify sounds, they do a pretty poor job of making them intelligible, especially speech. The frequencies that give beauty and depth to music and speech alike, reside in the upper frequency levels, frequencies damaged ears simply can’t detect, regardless how loud they were.
Not having insurance that covered the higher priced aids, I went with what I could afford at the time, a pair of Audicus aids purchased online. The aids came pre-programmed with four settings for different situations. Being basic, generic devices, they did nothing to enhance speech or tailor the amplification to my deficiencies. Wearing them in noisy situations only made matters worse; they amplified all the sounds so that a speaker in a restaurant is just as loud as the HVAC motors, diners’ conversations and televisions in the bar. I remember attending an annual meeting of the county’s convention and visitors bureau in 2015. Part of the program involved presenting the “person of the year award” to a contributing member. For 10 minutes or so, I listened to the presenter list the recipient’s projects and successes as justification for the selection. I had no idea what was being said.
When it came time for the individual to receive the award, I stood and applauded like the rest of the people in the room. The person sitting next to me jabbed me in the side and said, “Get up there; you got the award!”
I had no idea.
The honor was short lived, and 2018, I lost the job to Republican housecleaning, similar to what we’re seeing under Trump 2.0. I was 63, had no health insurance and no job. Better hearing aids were way out of the question, and I struggled along writing books, working part-time in an art cooperative and remodeling an old stone house. I continued to use the Audicus aids, but speech recognition was becoming impossible, especially in the echoey environment of the art cooperative, located in a cavernous, brick storefront. I dreaded having shoppers come in and strike up a conversation. I am sure I came across as antisocial or uninterested.
Then came covid, masks and Plexiglass barriers. Those were the worst months. Hearing was difficult enough without the words having to first pass through layers of muffling material. Like the rest of the world, I withdrew into what was already very familiar territory.
Amid all this, we sold our house and moved to West Virginia, where a heart attack, aortic valve replacement and cardiogenic shock in early 2020 left me hospitalized for three months, including a month in a Pittsburgh acute heart care unit. I was unconscious most of the time; communicating with my care providers was extremely frustrating. It was only when my wife was in the room that I had an advocate who could explain that my uncommunicativeness was not necessarily due to my illness. I simply could not hear. Nurses and doctors were always yelling at me, and I was so weak, I could not hold a pencil to write notes. It was a very lonely, scary, isolated experience. Worse, the tinnitus, empowered anesthesia and prescription drugs, took on new forms, like an incessant motor sound or very flat, dissonant music. When I was moved from the acuity hospital to rehab center, I asked why they played the same songs on their room speakers that I heard in the other hospital? The nurses insisted there was no music; in my world, the music never stopped.
My Medicare Advantage plan included a hearing aid benefit. After a year of getting the heart failure issue under control, I delved into a better pair of aids. The plan limited the selection to only a couple of mediocre brands that were way overpriced for what they provided. Knowing I needed something really good, I went with a higher end provider who could tweak the aids through a home computer connection.
During the initial evaluation, the audiologist was very honest with me; hearing aids were not going to do much for my speech recognition. I was not hearing anything above 1Khz. She suggested I look into an implant, like the Cochlear brand, which uses bone conduction and high-tech processors to fool the brain into thinking it is hearing. There were two big drawbacks, especially for me. First, it would involve another surgery under general anesthesia. My hallucinations under anesthesia during my many heart procedures made that a huge concern. Second was the cost. Whereas hearing aids were $4,500 on payment plan, the surgery would run into the tens of thousands.
I went with another pair of hearing aids, which were periodically adjusted during virtual sessions with the audiologist. I was surprised to find out that, as my wife had said all along, the refrigerator motor was very loud and back door squeaked when you opened it. the refrigerator motor running and the backdoor squeak when it was opened. The hearing aids made my world noisier, but not more intelligible. I dreaded talking to people, especially my neighbors, who spoke the common West Virginia dialect. I could stand in the front yard “talking and listening” to a neighbor for an hour, then go in the house and tell my wife that I had no idea what the man said but that we had a nice visit, and I was certain the stories were interesting.
Stick around for the third installment of my journey, when I will discuss how technology helped me continue to write the stories of Appalachia through failing ears.
