The first time I went to the doctor for hearing loss, I made an appointment with my usual ENT and brought my mom along for support. His examination room was lined with letters from parents of patients and Crayon drawings from children, all thanking him for his kind demeanor and amazing skills. Those letters must have him confused with someone else because while he is a great doctor, he was not kind. Or maybe my health concerns were not his top priority as they did not offer him a chance to change my life and feel like a hero. After spending time in his waiting room for four hours past our appointment time — complimentary WIFI was not offered and I only had two gigabytes of data; Verizon was late to the unlimited game, determined to suck out every penny they could before they started losing customers — our conversation went as follows:
“There’s a hole in the right eardrum but it’s not big enough to affect your hearing.” We had known that after my eardrum repair surgeries (one on each ear), there would be a 50/50 chance of the repaired holes coming back. It only came back in my right eardrum. His tone was bored and irritated as if he had something entirely more important that he needed to be doing four hours past our appointment time that was scheduled two months ago, but I digress. I think this was the appointment where I knew he would never get a decorative letter from me.
I told him the truth: “I don’t know how to explain it, but something is not right. I feel as if I cannot hear anything. I have to listen to things at a super high volume.” My mom concurred that the TV is blaring when I watched it.
There was a long pause as his assistant who stood behind him typed notes on the computer. I could see the gears moving slower in his head while the workmen started to daydream about the small and grateful kid that placed a cochlear implant into earlier that day. That was why he became a doctor, not this. Although in hindsight, I will admit I did not provide the best description by saying that I was convinced there was something wrong with no evidence. In my own defense, however, I was less versed in these matters than I would like to think I am today.
“Just turn the volume down. You’re used to listening to it that loud. You’ll get used to it being at a lower volume.”
We sat in the waiting room for four hours and we were in the examination room for all of twenty minutes.
Twenty minutes we were in the examination room and he managed to sabotage my gut feeling about my own health for the next few years.
***
A couple of years later, the doctor’s office was tilting to the right until the whole room was at a 90-degree angle before resetting. The rest of the rotation occurred when I blinked. My brain was trying to say, “If you keep your eyes closed everything will be okay.” My head was between my hands and my wrists rested on my knees. My back ached from dry heaving all night and when I closed my eyes, I could feel my brain spinning like it was on the home spice rack of an indecisive amateur cook.
The receptionist brought me a small black trashcan and the muted thud the plastic made when it hit the linoleum called the attention of the other patients in the waiting room. My mom rubbed my back and tapped me to look up. I used the nurse’s light purple glasses as an anchor point. It did not help the spinning or my stomach trying to push its way through my esophagus as if the waiting room was front row at Elton John’s final concert and my stomach acid was his number one fan, but it felt like I was helping so I do it anyway. She was nice enough to frame most of her questions to yes or no answers and anything more complicated my mom spoke up for me. This was my third time at a doctor for an episode of vertigo in roughly 12 months, she did not need my help. We were at my new ENT. He was not my favorite, but he was exponentially more kind and listened to me. Maybe a little ironically, I felt heard and understood even though at this point in the story I hardly had the capability to return the favor.
We left with another antibiotic, another steroid, and another medicine for nausea. For the third time, I was diagnosed with an ear infection. Three times within one year.
After those three visits, I went through three rounds of steroid shots directly into my right ear. My problem ear. My “bad” ear, as I affectionally call it now. The shot went directly into my eardrum. Luckily for me, it did not hurt because I already had a hole in my eardrum.
Side effects included but were not limited to: Temporary hearing loss. Nausea. Dizziness. Pain. Permanent hearing loss. Allergic reaction. Depression. Anxiety. Mood swings. Sleep difficulties such as, but not limited to, insomnia. Loss of appetite.
Don’t speak to your prescribing doctor immediately if any side effects occur because it will be hard to tell if that is the disease taking its course or if that is the medication. Just wait until you go in again, the copay isn’t worth the extra visit.
I was given a sheet of paper stating this drug had only been tested on people roughly forty years older than me and that they cannot guarantee any results. Another sheet of paper said I would not know if my insurance covered the procedure until well after the appointment cancellation fee applied to my account. I signed.
***
I remember yelling at my dad in tears because I could not hear what he was saying. I remember crying after class in my car because the walk to class from the garage made me nauseated and then I could not hear the professor anyway. I remember crying after going to the doctor because he kept describing my hearing loss as “not a big deal,” and telling me to avoid salt and sugar to help manage the tinnitus that I woke up with one day. (In the United States of America? Is he kidding?)
(No, unfortunately, he was not kidding.)
I remember asking him for solutions because even if it was not as bad as other people’s it was still hard to lose something you have had for 22 years. I remember telling him that I hated listening to music in my car or with headphones because it was noticeably louder on the left side. I remember him saying, and I quote, “If it bothers you so much, you could get a hearing aid.” I remember declining because I felt undermined and ungrateful for the hearing I do have.
I felt overdramatic.
I remember being at work and not being able to work because the ringing in my ear would suddenly get so loud that I couldn’t hear myself think let alone other people talking to me. I remember sitting in the back with my head in my hands trying to stop the room from spinning after using the ladder to get something down from the wall.
I remember how everything I do every day is affected by what a doctor called, “Not a big deal.”
My incurable Meniere’s Disease is not “a big deal.”
***
I am sitting at my desk in my home office, all three of my monitors turned on. I used to drown out the digital hum of old technology with rain sounds or instrumental music with the hopes to prevent myself from spending hours googling “Quietest Computers for the Exact Amount of Money I Have in My Savings.” Now I no longer hear the quiet drumming sound of old technology unless I stick my ear directly next to the screen. It blends in with my tinnitus most days. Some days I just cannot hear it.
Outside through the window and the thin walls of newer homes, I can hear my dad scraping inches of snow off the only car we have that feels safe to drive in this weather. It is deep and slow, something my brain used to filter out as unnecessary background noise. I probably would not have even noticed, too busy trying to ignore the humming. Today, though, my left ear locks into that sound, unable to focus on much else. It happens in intervals, but my brain waits for it, wondering if that is how it really sounds or if that just how I hear it now.
In the living room down the hall, my sister watches a new show she’s found — an Australian women’s prison show. I can hear the fight scene, the girls screaming at each other, the sound of the metal prison furniture clanging onto the concrete floor, before it goes quiet except for a loud ringing — the continuous bell sound movies and TV shows use to imitate tinnitus. That is not what mine sounds like but it grabs the little person in my ear (I imagine them wearing green and white lederhosen or an opera dress…I don’t know why) who sings my tinnitus pitch and shakes them so hard they grab onto my eardrum, all the while screaming higher and higher because they are uncomfortable with the competition. Combined, they shake my bad ear until I can feel it vibrating, a sharp stab following my ear canal down what looks like my neck from the outside. I can no longer hear my dad scraping the ice from the windshields.
I used to type slowly on my keyboards because the deeper tapping sound combined with the buzz of the screens would drive me insane. The sound of my fingers moving quickly on the keys is welcomed now because it means I was able to get work done today. On one screen I have the video instructions open for my HTML assignment, the other Sublime Text, and on my laptop, I have the audio recording program open for class and Zoom. I try to listen to the instructions from the previous day’s lecture instead of watching because when the mouse moves the whole room follows it and I am left to grab my pens and textbooks, so they do not slide off the desk. I feel like I am on a boat in rough waters, sea sickness sliding up the back of my throat at an equally sickening slow pace.
However, the boat I am on is not heading anywhere.
I hate when people call healthcare a journey like I picked up extra shifts at work and saved my pennies and cut financial corners to get here. As if I skipped my avocado toast and brought my lunch to work. As if I have a destination to get to. As if I got a notebook and planned the whole thing out with my gal pals and went on a shopping trip for a whole new wardrobe that I’ll never wear again. I can see the advertisement now:
ALL ABOARD THE MENIERE’S TRAIN! DESTINATION: TINNITUS AND HEARING LOSS! SNACKS INCLUDE: JOKES ABOUT HOW YOU ARE TOO YOUNG TO HAVE HEARING LOSS! DEPARTURE TIME: CHANGES EVERY DAY, RANDOMLY AND INCONVENIENTLY. COST: TIME AND MONEY SPENT AT THE DOCTOR’S OFFICE EVERY FEW MONTHS AND PICKING UP AND PAYING FOR MEDICATION EVERY MONTH. ONLY ONE WAY, SOLO TICKETS AVAILABLE!
How inviting and exciting? No, that doesn’t sound right…Delightful and inciteful? Enthusiastic and fantastic? Thrilling and exhilarating? No…
Maybe if I had a slight chance that it might go away would I consider the word “journey.” Maybe once I start to feel like I have control over it, I will make one of those Instagram posts like,
“It’s been quite a journey to get here! It hasn’t always been easy…” and blah blah blah. For now, though, I am content to make customers feel bad when they are rude because I have asked them to repeat themselves. I get to say with great satisfaction that I have a bad ear and their faces contort into an expression that I can only assume is very similar when they must tell their significant other that they have watched their “together show only” without them.
But it’s okay, I promise. I don’t see anything wrong with it and it’s not a big deal.
