And I knew the silence of the world

This is part 2 of an autobiographic pair of posts by Stephen Klusza about his decision to get cochlear implants in graduate school. You can read about his life up to his decision in part 1. This multimedia post includes a video at the bottom of the page with images and excerpts of songs that express Stephen’s journey.


–Stephen

Hello darkness, my old friend,
I've come to talk with you again,
Because a vision softly creeping,
Left its seeds while I was sleeping,
And the vision that was planted in my brain
Still remains
Within the sound of silence….


- Simon and Garfunkel “The Sound of Silence”

Within the past decade, I have occasionally remarked that if I were born 50 years earlier, I would have been out of luck. After losing the rest of my hearing, I felt that I was past the point of no return. In an effort to leave no stone unturned, I went to see a specialist at the Mayo Clinic in Gainesville, who ordered an MRI to determine the cause of the loss. Although the radiologist report came back with no findings, my specialist looked through it more thoroughly and found that my vestibular aqueducts were malformed in my inner ear on both sides. They were partially functional but prone to collapse at any time. Then, he said that I would be a good candidate for cochlear implantation. Even in the late 2000s, I had never heard of cochlear implants (CIs), despite my many previous visits to many audiologists and ENT doctors. I was stunned to learn that something could bring my hearing back. It all seemed too good to be true – and it was. 

The doctor presented many caveats and uncertainties about the procedure. The process is irreversible, in that you lose any residual natural hearing upon surgical implantation. The surgery has a small risk of facial paralysis because of the proximity of facial nerves to where they drill to access the implantation site. The other factor weighing on my mind was the increased visibility of the processors compared to hearing aids. I had always worn behind-the-ear hearing aids that were visible with my short hair, but I still wished I could completely blend in the crowd and be left alone from all the stares and whispers that I had experienced all my life. Wearing hearing aids or cochlear processors was never a source of shame for me. I was simply tired of being a spectacle. I was tired of working much harder than hearing people just to be worthy of the furthest seat at the table. I was tired of persevering against all odds for a world that treated me as lesser than my hearing colleagues.

My pain is self-chosen
At least, so the prophet says
I could either burn
Or cut off my pride and buy some time
A head full of lies is the weight, tied to my waist

The river of deceit pulls down, oh oh
The only direction we flow is down
Down, oh down….

-Mad Season "River of Deceit"

I did not have a magical moment of rational clarity that led to my decision to get implanted. In my vulnerable state of self-preservation, I simply clung to the tiny slivers of hope that things might somehow get better with the implant. My first surgery (left ear) was scheduled during Christmas break to allow for recovery from the invasive surgery. My parents visited for a couple of days to help me get through the worst of the post-operative trauma from the outpatient surgery. I had a reaction to the anesthesia and severe dehydration led to nausea, vomiting, vertigo, and migraines from the tightness of the head bandage. My only respite from the pain was formless sleep.

Every Christmas, I would go with my parents to visit my grandmother, but I was unable to do so this time. She completely understood but it broke my heart that because of my surgery, she would not be able to see me or my parents that year. My parents spent a lot of time and resources to help me recuperate. I was more distant in my interactions with everyone, including my dog Honey. Given that we went on many daily walks and enjoyed play time whenever I was home, I can only imagine the puzzlement she felt when my demeanor changed, when I largely stopped doing those things with her. It is something I regret to this day because I lived by myself and she was alone whenever I wasn’t home, and there was no way that she could understand what was going on. In retrospect, I sometimes wonder if guilt was the deciding factor for me to get implants. There was a chance that implants could bring back some semblance of the life that I used to have with my family and the few friends that I had. I was even willing to put myself through more pain and uncertainty just for the chance to hear Honey’s grumbles and barking when she didn’t get her way (since I spoiled her rotten).

A long December and there's reason to believe
Maybe this year will be better than the last
I can't remember the last thing that you said as you were leaving
Oh the days go by so fast

And it's one more day up in the Canyons
And it's one more night in Hollywood
If you think that I could be forgiven
I wish you would

- Counting Crows “A Long December”

My first activation was mostly typical of other adults who have had cochlear implants – voices sounded like robotic chipmunks and high frequencies were like icepicks to my ears. Music sounded like washes and drones of static, like a detuned radio unable to tap into the specific frequencies. The doctors counseled me beforehand that it would take time for sounds to make sense. I understood what they meant, and accepted this logically, but nothing can ever fully prepare for you for how your body reacts to situations of uncertainty. My brain became a battlefield between the unconscious and the conscious, with the dueling synapses lobbing salvos of emotion and logic at one another in their pareidolic attempts to find answers within random patterns.

Here, there's no music here

I'm lost in streams of sound
Here, am I nowhere now?
No plan
Wherever I may go
Just where, just there I am
All of the things that are my life
My desire, my beliefs, my moods
Here is my place without a plan 


– David Bowie “No Plan”

Towards the end of the following summer, the residual hearing in my right ear disappeared, which made me eligible for a second implantation. The only surgery time available was right before Christmas and I had to call my grandmother and tell her that I could not see her again, and that I was sorry. She wanted the best for me and assured me that it was okay. I resolved to make sure that nothing would get in the way of me spending time with my grandmother for the next Christmas. Unfortunately, she passed away before I could do so I could not fulfill her wish to see me graduate. I dedicated my doctoral thesis in her loving memory.

Time can bring you down, time can bend your knees
Time can break your heart, have you begging please
Begging please….

- Eric Clapton “Tears in Heaven”

It took me 2 years, from hearing loss to CI rehabilitation, to get to a place where I could listen to and enjoy music again and have conversations with people in noisy environments.  When I was implanted in my other ear, recovery from was just as rough as the first time, but activation in that ear took a lot less time to program as my brain already knew how to process electrode signals. For a moment, I thought I was hallucinating when music I listened to would pan between the left and right channels. However, I soon realized that I was experiencing life in true stereo for the first time. After so many years, I could finally detect the direction sound was coming from, which gave me the strength to continue with my rehabilitation.

Altogether, I wound up spending 7 ½ years in graduate school with a minimum of papers, which many would consider a death sentence for academia prospects. Still, I forged ahead and secured a postdoc at the University of North Carolina, Chapel Hill and spent several years studying epigenetics in fruit flies. At the time I was applying for grants, several agencies included a section where applicants could explain discrepancies and life events that may have affected their publication record. I detailed my struggles in those sections and sent in my applications. I did not succeed in getting funding from those grants. I remember one of the reviewers remarking how I needed to publish a lot as a postdoc or I would not make it in academia, with no mention whatsoever of the life events that I went through. In knowing how reviewers do not read everything in a proposal, I question if reviewers actually read the documentation section and take into account obstacles that happen in people’s lives. In any case, it was clear that continuing in this traditional academic career path would be nothing more than going through the motions, with one foot in front of the other.

And I'm stuck in a shack down the back of the sea
Oh, and I'm alive and I'm alone inside a sick, sick dream
Oh, is it me, is it me that feels so weak?
I cannot deceive but I find it hard to speak

The hardest walk you could ever take
Is the walk you take from A to B to C

- The Jesus and Mary Chain “The Hardest Walk”

For the majority of my life, I never felt like I truly belonged anywhere. I was bullied by hearing students and adults throughout my adolescence. Those who did not approve of the bullying simply stood by the sidelines and averted their eyes. Perhaps I could have looked back on these times with more fondness if I was more involved with the deaf community. That never came to be, as I was told through the grapevine that deaf members of my family were upset and angry when I first got hearing aids as a young kid; they were even more upset about my decision to get cochlear implants. Cochlear implantation continues to be a contentious issue for many deaf people, who view it as a betrayal and rejection of deaf community and culture. I know now that there are many deaf people who welcome those with cochlear implants, but as a despondent deaf kid coming of age, I felt that it was only a matter of time before I would have been rejected from the deaf community as well, so I rejected the deaf community first.

Instead, I embraced the solitude that my deafness foisted upon me and adjusted my social habits in how I interacted with hearing people, for better or worse. Looking back, this defense mechanism had huge ramifications on my social skills that greatly influenced the future trajectory of my life, including my career. At one time, I thought that science research would be perfect – surrounded by dusty tomes and papers on a cluttered desk, my mind preoccupied with fantastic biology puzzles, and a minimum of human interaction. Of course, now that I am a scientist, I see that this was a pretty naïve viewpoint on my part. I had hoped that academia would be this enlightening, welcoming, and supportive place that I had always imagined it to be. I sacrificed two decades of my life in this endeavor, only to be told implicitly that I wasn’t worthy enough for future consideration as an academic. It was seemingly yet another rejection from a community that I had sought very hard for acceptance from….. 

Hey!
Don't come around here no more
Don't come around here no more
Whatever you're lookin' for
Hey! Don't come around here no more

-Tom Petty “Don’t Come Around Here No More”

or so I thought. I am now an Assistant Professor of Biology at Clayton State University, a public undergraduate institution (PUI) with wonderful and caring faculty and students. I have found colleagues and friends who share my values in building a better STEM for everyone through the Open Life Science organization and the Genomics Education Partnership faculty collective. I am married to the most amazing and wonderful person that I have ever known. I am here now, writing this blog post and telling my story for The Mind Hears. If you had told me five years ago that this world would become real, I would not have believed it. Yet here it is, and for the first time in my life, I am holding on with both hands and never letting go. For the first time ever, life looked a little bit brighter.

My life has been extraordinary
Blessed and cursed and won
Time heals but I'm forever broken
By and by the way
Have you ever heard the words
I'm singing in these songs?
It's for the girl I've loved all along
Can a taste of love be so wrong?

As all things must surely have to end
And great loves will one day have to part
I know that I am meant for this world

- The Smashing Pumpkins “Muzzle”

video with images and music that capture Stephen’s journey

Dr. Stephen Klusza is a developmental geneticist who received both his B.S. and Ph.D. degrees in Biological Sciences at Florida State University and performed research in fruit fly epigenetics as a postdoctoral researcher at the University of North Carolina at Chapel Hill. As an Assistant Professor of Biology at Clayton State University in Morrow, GA, Dr. Klusza is interested in creating accessible and equitable low/no-cost educational resources and research opportunities to increase accessibility in education for all students. He also serves as the current Chair of the Diversity, Equity, and Inclusion Committee for the Genomics Education Partnership and advocates for disability representation in STEM and academia.
@codebiologist

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