Otosclerosis – My Life as a Deaf Musician

 

“Sorry, What did you say? I couldn’t hear you.” – Aaron Schilb

I am a singer/songwriter and I am almost completely deaf.

For those of you who may not know, I suffer form a condition known as Otosclerosis which is where I experience abnormal bone growth in my middle ear resulting in hearing loss.

weird al accordion
“Weird Al” Yankovic pictured in Halifax, Nova Scotia

First signs of hearing loss manifested themselves as inattentiveness in school, “selective hearing” when my parents spoke to me, cranking the television or radio as loud as it could go, and excessive yelling. Though none of these things are out of the ordinary for a 10-year-old boy. After all, what kind of 10 year old doesn’t want to listen to a “Weird Al” Yankovic accordion solo with his radio cranked to eleven?

Despite being mostly dismissed through early childhood, I failed school-mandated hearing test – this lead to the first of dozens of doctor visits and MRI scans.

My childhood ENT specialist, Dr. Sindey Christiansen, was a nice enough man, but his bedside manner left much to be desired. He was often cold, blunt, and rude with this explanations of what was happening to me. (Telling a child that they will go completely deaf before adulthood is kind of brutal, right?) During my ear exams he would be so rough and forceful with me that I once nearly vomited from the pain.

~Many years of useless doctors visits later~

stapedectomyAt age 16 I underwent my first left ear procedure, a stapedectomy. This is where the surgeon removes part of the Stapes bone in the middle ear, drills a small hole, and implants a prosthesis that allows the bone to once again vibrate when sound hits it.

With a 90% success rate the odds were in my favor that I would once again be able to hear.

I was not so lucky. I fell into the category of the 1% where middle ear surgeries actually WORSEN the condition. The piston installed in my left ear was attacked by scar tissue and consequently broken.

And to top it all off, I experienced a post-op condition of temporary loss of taste on the left side of my tongue. This was caused by the surgeon bumping a nerve inside of my ear that controlled my sense of taste. He stated that it would return in roughly two weeks – it did not. To this day, eight years later, I still cannot taste sweets on the left side of my tongue.

Despite multiple surgies to attempt at a reconciliation to restore my hearing, I was eventually presented with the only remaining option – dual hearing aids to correct major bilateral hearing loss. 

I had just started writing music. I had just formed my first band. I had just found my first love.

Heart. Broken.

~Oh, you’re deaf? How do you play music if you can’t hear it?~

I swear I am asked this question multiple times each week and even more so now that I live in Nashville, TN which is colloquially known as “Music City USA”.

I am able to write, record, and perform music due in large to my brilliant hometown audiologist Dr. Morgan Hahn.

Because I am a musician and audio engineer, I am impossibly picky about the way things sound sonically. Getting a good mix on a song with two guitars, bass, drums, and vocals is hard. But getting a good mix of ALL SOUNDS ON THE ENTIRE PLANET EARTH is nearly impossible.

Dr. Hahn was patient with me when I would come back to her office twice a week for nearly three years while I adjusted the EQ mix of my hearing aids and got refitted for the c-shells that live inside of my ear canals 17 hours a day.

Despite saying that if I continue to play music I’ll certainly go entirely deaf, I have to ignore these warnings. Playing music isn’t just a desire, it’s a compulsion. I actually go through deep depressive waves when I don’t write or perform. Music is the only drug that makes the blues go away. (What’s funny is when I write a blues song and it makes me happy. The blues make my blues go away™ – maybe that’s a song in the future? I’ll go ahead ™ that right now just in case.)

If you keep a sharp eye out at my live shows, you might just catch a glimpse of the tiny devices that enable me to do what I love.

~ How I do more than just “get by” with my hearing aids~

Without purging the nitty gritty details of exactly what’s happening in these insanely expensive computer things in my ears (these often cost $3,500 per ear and aren’t even covered by most insurance carriers because it’s a “pre-existing condition”) I’ll say that they have a few different settings that help me out. IMG_0382.JPG

First is an automated pre-set that adjusts volumes according to how loud my surroundings are. It filters out both high and low frequencies to help “focus” the mid range frequencies at which most people speak.

Second is a wide open pre-set that allows all frequencies to be amplified. No longer using a spectral gate to filter out “unnecessary” sounds, I am allowed to hear appropriately loud sounds. ~This is the setting I use while performing~ because it has such a wide frequency response rate which allows me to hear my guitar and voice (or anything else) while performing.

Third is my personal favorite…… THE MUTE FUNCTION.

It conveniently allows me to live in silence. And yes, I know what you’re thinking, “You’re deaf. If you want silence, why don’t you just take out your hearing aids”.

I use the mute function because it allows me to feel like I am in control of my hearing loss. I can choose to hear everything around me and be a part of the world, or if I need to focus and do work (or take a nap in the library like when I was in college), I can do so.

While in reality, no, I am not in control of my condition and it’s a possibility I’ll go completely deaf before I’m 30, it’s more of a placebo for my self-esteem to feel like I have the decision to not hear.

That choice to temporarily be in total silence gives me power. It’s the silver lining surrounding this degenerative middle-ear bone condition I’ve suffered from since I was 10.

~It’s really damn hard not to lose hope~

There are days when I wake up literally on the wrong side of the bed… unable to feel the vibrations of my cellphone alarm. Consequently I have to start some days being late, feeling rushed, and honestly, a little pissed off at myself for not laying still enough or close enough to my phone while sleeping to wake up on time.

It sucks to be reminded of my disability from the moment I wake up in the morning to the moment I take out my hearing aids at night.

I once left the water in my sink running all night because I couldn’t hear anything when I turned off one handle and unknowingly had turned on both the hot and cold knobs.

It’s really easy to feel sorry for myself; to wallow in my self doubt; to want to give up every time one of the batteries in my hearing aids dies in the middle of a show (yes, that has happened and it’s super funny to watch the audience try to figure out what the hell I’m doing).

But no matter what I refuse to lose hope. Hope is the only thing that gets me through the day. Hope is how I know I will get to where I need to be.

“I think it’s about hope. About offering hope and this idea that we can be, and all are, enslaved in some way. Imprisoned in some way. We’re doing it to ourselves most of the time. […] and I guess it’s that if you understand that everyone is trapped to a certain degree the movie offers the possibility that there is a place in the sun for you somewhere. There is a place that with some perseverance and patience, and a little luck…you can get there”

– Tim Robbins discussing his performance in The Shawshank Redemption on the ID10T Podcast with Chris Hardwick.

~What’s next?~

IMG_0329
Aaron Schilb recording his new album “Rock & Roll Degenerate” in CBP Studios, Nashville TN

I am in the process of recording my new album, “Rock & Roll Degenerate”, as an homage to my degenerative hearing condition. I am not a leather wearing, long-haired rocker dude. I am more of a sweater wearing, Big-Foot-On-My-Socks, hearing aid clad,  rocker type of dude. So in more than one way am I a different kind of degenerative rock and roller.

Overcoming the (oftentimes) bleak and discouraging feelings that stem from losing my ability to hear, I will persevere; I will press on.  Not being a musician has never and will never be an option.

“Come close, don’t you understand that I’m a different kind of rock and roll degenerate, man?”

**Please remember to sign up for my email list to keep up to date with my new music!

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– Find my music on Spotify / Apple Music / CD Baby / Soundcloud

 

Tracking listing for my new record:

  1. Rock & Roll Degenerate
  2. Blowing Smoke
  3. Running from Redemption
  4. Montreal
  5. Alive
  6. When the Sun Goes Down

 

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