The 25 Year Silence

                 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I posted on social media not long ago about my progressive hearing loss, and promised to share my experience as I start the journey of Cochlear Implantation.  I figured it was best to start from the beginning on what the last 25 years have been like, and why I am choosing to go this route now that I am (d)eaf.

I was not born Deaf, I was born with perfect hearing.  You will see me refer to myself as (d)eaf...it may be confusing but here is a little article that explains it far better than I ever could D/deaf: What's the Difference?  There is a culture for the Deaf, and a culture for the hearing, but having a severe/profound loss is sort of a limbo space to be in.  It's taken nearly 25 years for me to really embrace this life experience, and finally share what it is like with others. 

For the longest time my hearing loss made me feel like a toy that had been cast away to the "Island of the Misfits".  I wasn't completely a lost cause, but there wasn't really a place where I fit.  We found out that I had suffered major hearing loss when I was 12.  My dad had recently passed away, and all I could remember was walking into a soundproof room as a hearing person, and walking out broken.  No real explanation as to why, other than a deduced theory. For years I would go back into that chamber and endure the torture of more beeps I couldn't hear, and words I could no longer understand.  I would watch my world slowly fade into silence I cannot control because this loss is for whatever reason progressive. I would attempt without success to hear my children whispering, birds chirping, my turn signal blinking, so frustrated that no matter how much I concentrated I couldn't access the ears that I had been given. Every time I walked into that booth I felt more defeated and broken than the last.  2 weeks ago was probably the worst outside of my initial diagnosis of loss at 12. 

It was an odd experience sitting in a soundproof booth at Costco at 37 years old waiting on a hearing test.  There is a large window at the door of these rooms, and shoppers can see in as they cross over to the pharmacy.  There was an older gentleman (late 60's) pushing a cart along who happened to glance in my direction right before my test started.  He was so perplexed with me in that room that he did a double take, and had to stop and look at the sign above him the indicate that I was indeed in the right place. His head tilting ever so slightly as his eyes tried to focus on the red sign above that read "Hearing Aids".  His eyes grew big and he glanced back with a sort of pity on his face.  Its a look I'm all too familiar with.  "But wait, you don't *look* broken..."

I tried the hardest I think I have ever tried at a hearing test.  My eyes closed, laser focused. So hard that I was popping false positives like nobody's business. This was the first clue of the news that would later be confirmed. My brain thinks it can hear, because it used to before...unfortunately it can't access the sensory information from my ears anymore.  I was given the news that after a cozy 10 year maintenance state my hearing had dropped from severe to profound.  After 25 years of sliding off the hearing charts, I was being told I was officially (d)eaf.

I'm a crier.  I cry.  A LOT.  Happy things, sad things, funny things... my eyes are constantly leaking. My amazing husband knows this and finds it endearing enough to love it about me. I feel like a sap every evening at 5:27 when they play the last story on the CBS evening news.  The heartfelt one where your faith in humanity is restored?  Yeah, I bawl pretty much every time. I even included this in our wedding vows because it's going to be a lifetime thing.  So there I sat on a Friday afternoon before Labor Day with a woman I had just met, bawling with a mask on in a soundproof square next to the 500 piece variety pack of Bandaids, and Aspercreme. Officially broken. I had walked into that booth expecting to get a new set of hearing aids, and walked out needing to consult with an ENT about Cochlear Implants. For lack of a better description, my ears are hard broke. 

I knew my hearing wasn't getting better, and my husband and kids have noticed me struggling a lot more these days, especially with people now wearing masks all the time even with my hearing aids.  I picked up lip reading very quickly after my initial loss, and it has been a huge contributing factor to functioning like a "normal" person. I had that swiftly and unexpectedly removed thanks to COVID-19 and have struggled a lot as a result.  These days the first thing you are most often to hear me (or more often my husband) say is "Hi, I'm hard of hearing and can't read your lips. Could you please speak up?"  The same look ensues for most, then it's a 50/50 split on whether they will yell and enunciate slowly like I am an idiot, or simply speak just a bit louder with eye contact.  Sometimes I feel like I am broken, a burden.  Eye contact reminds me that I am not, I simply just have to be myself, and this is a part of who I am.  The part that helps me learn, grow, and relate to others.

Now starts the long process of seeing if I am a candidate for Cochlear Implants, and finding out what that actually all entails.  All I know is that traditional hearing amplification devices no longer work, and this is next step of the process.  My brain is now missing out on tones that my ears simply can't pick up anymore, and it is time to intervene.  It's causing more challenges with my balance, and I struggle with understanding verbal communication 80% of the time. It's time to find a better solution. My goal is to walk out of that sound booth at some point regaining what I have lost.  My hearing, my understanding, my confidence. I just have to figure out how to best upgrade my external hardware to get there.