Tag Archives: deafness

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

Lyrics from Vomit Arsonist "no one can help you" sound with image of barbed wire in the background. "no one its a lonely journey where suffering in silence is the standard suffering alone suffering all I ever want is someone to ask if I'm ok but no one ever does

The Sounds of Silence

This multi-media autobiographical post by Dr. Stephen Klusza has two parts. Here, in part 1, Stephen shares with us his journey leading up to his decision to get a cochlear implant in graduate school. Part 2 will be released in late August 2021. Part 1 includes a video with song excerpts and images that augment Stephen’s story at the bottom of this page.


— Stephen

I was born in the most perfect year, you see.

There was nothing too special about 1978 per se, but some of my most cherished moments were only a few years away. Born in the hazy and humid throes of Florida summer, I was just another toddler trying to make sense of the world around me. Around then, my parents grew increasingly concerned when I was not attempting to talk like other kids my age, but they were assured that some kids took longer than others to communicate. When I was 2½ years old, they knew something was wrong. As they called for me from behind, I did not respond; but my eyes lit up with a wide grin when they came into view.

Can you hear me, can you hear me running?
Can you hear me running, can you hear me calling you?

– Mike and the Mechanics “Silent Running”

I had moderate-to-profound sensorineural hearing loss. I had had severe asthma for the first few years of my life that was resistant to treatment. A few times during my frequent hospital stays, my fevers spiked to 106-107˚ F and I was placed on top of bags of ice to save my life. It was thought that the recurrent fevers had damaged my hearing, and my parents were encouraged to fit me with hearing aids to amplify what I could hear.

Me mind on fire
Me soul on fire, feeling hot, hot, hot

 – Buster Poindexter “Hot, Hot, Hot”

If I could describe the early years of my home in one word, it would be music. There was nary a weekend when the record player wasn’t spinning the likes of Black Sabbath, Foreigner, Jethro Tull, The Cars, Jimi Hendrix, and hundreds of other bands. Then in 1981, something happened that transformed my life completely – MTV. With my new hearing aids, I soaked in the wondrous sounds from the stereo system, and the music from MTV ‘music videos’. At such a young age, the videos rarely ever made sense and my partial hearing loss meant I never understood the lyrics, but that was never an obstacle to my appreciation of music.  I heard the wide-ranging melodies of 80s (rock to new wave to pop); this was combined with watching the artistry of the videos painting worlds I had never seen, the expressive emotions on the singers’ faces, and the translation of stories that brought the characters’ lives into pure sound. It did not matter if I could not understand the words, the music spoke to me more than words ever could. 

I hear the drums echoing tonight
But she hears only whispers of some quiet conversation

 – Toto “Africa”

My memories of those times are not as sharp now (almost four decades ago). I still have the feeling of wonderment of all the videos that I voraciously devoured – Michael Jackson’s “Billie Jean”, Elton John’s “I Guess That’s Why They Call It the Blues”, Tina Turner’s “Private Dancer”, The Police “Wrapped Around Your Finger”, and others. I am very aware of the intoxicating bias of nostalgia, but it truly felt like a blissful, creative time. I loved watching the videos at a loud volume and bopping along to songs, such as Cyndi Lauper’s “Girls Just Want to Have Fun”. Looking back, my mother must have been exasperated at some of the songs I became obsessed with, particularly those in which I was able to make out a few lyrics. I distinctly remember singing the chorus “multiple” times from that one-hit wonder song by Madness:

Our house, in the middle of our street
Our house, in the middle of our street
Our house, in the middle of our street
Our house, in the middle of our…

- Madness “Our House” 

My love of 80s music paralleled my love of 80s movies and TV. I loved several science-themed movies that had the 80s-style poetic license in full effect, such as “Weird Science”, “My Science Project”, and “The Last Starfighter”, among others. My first exposure to the idea of college was the movie “Real Genius”, which showed extremely bright young people working on laser technology — which blew my still-developing mind. It would be many years before I could go to college, but I was already looking forward to skating on ice-covered dorm hallways, learning science, and building exciting inventions.

Gimme a new sensation
In a place that has no name 
Something tells me I'll never be the same…

- The Comsat Angels “I’m Falling”

As an adolescent, I experienced the usual share of high and low points, along with the difficulties of being a hard-of-hearing/deaf person in hearing schools.  Nevertheless, I excelled in academics and began a love affair with genetics during Advanced Placement Biology in high school. All it took was my teacher Mr. Force (that was really his name!) introducing me to the Punnett Square, and I fell head over heels. I knew then that I wanted to major in Biology to become a geneticist. After graduation and a break for a couple of years, I went to graduate school to specialize in developmental genetics and become a professor of biology. The academic career path was the only one I knew at the time to do the science that I loved so dearly.

One night after working out, everything sounded off-pitch with my hearing aids on. I thought there was something wrong with them and I planned to have them checked out. Later, I woke up in the middle of the night with a splitting headache and thunderous ringing and feedback in my ears. I barely slept that night.

And I can't get it out of my head
No, I can't get it out of my head
Now my old world is gone for dead
'Cause I can't get it out of my head…

- Electric Light Orchestra “I Can’t Get It Out Of My Head”

My way of understanding was shattered. Everything came to an absolute standstill. I lost count of the number of medical appointments that followed, and time slowed to a crawl. My mom accompanied me to one of my appointments and the doctor said, “I don’t know what’s wrong with your son”. My mom, always optimistic and full of life, became instantly deflated. I will forever remember the singular sensation in that moment of hearing the doctor’s uncertainty. It is like goose bumps, only it felt like a slow but steady wash of fluid electrocuting me. I remember the feeling of crackling, like lightning striking a strong tree and destroying it into a million shards of glowing embers. I was faced with the prospect that this was serious and potentially irreversible. Then came a creeping fear that music may forever be out of my reach from that point on. One of the most joyous parts of my life was gone. In its place, was a constant onslaught of throbbing, droning tinnitus, screeching, and roaring to an audience of one inside my head. With no relief in sight, I was no longer compatible with my body, and I was abandoned.

So it’s all come back round to breaking apart again
Breaking apart like I’m made up of glass again
Making it up behind my back again
Holding my breath for the fear of sleep again
Holding it up behind my head again
Cut in deep to the heart of the bone again
Round and round and round
And it’s coming apart again
Over and over and over

- The Cure “Disintegration”

When all this happened, I was well into the fourth year of grad school. Prior to this sudden hearing loss and tinnitus, I had developed significant anxiety over my dissertation research.  Grad school is often extremely stressful, and I had multiple experiments in progress at any one time. After that fateful night, I tried to go straight back to doing research and notified my mentor and lab mates that my hearing was messed up. I tried to keep up with my experiments, desperate for distraction from the severe tinnitus I was experiencing, but I started falling behind. The weekly meetings with my mentor and my camaraderie with my lab mates were strained, through no fault of their own. How do we support someone going through such a catastrophic event? How can we find new ways to communicate when the old method no longer works? Is it the right thing to do to let them be, or should we give help that is unsolicited? These are hard questions when someone is going through any significant loss and there are no right answers.

I attended lab meetings and tried my best to follow with the speech reading skills I had always used in conjunction with my hearing. At best, it was passable; at worst, I missed everything completely. I still had teaching assistantship work to carry out and carried around a dry-erase board and marker for communication. This system was fine for asking a question but was woefully inadequate for conversation. It was very isolating, and I did not know how much longer I could go on like this. I did not know sign language and even if I did, there was no one else to sign with. If I did manage to complete grad school and receive a PhD, it would take me longer than 5 years, further endangering my chances at success in academia. After working so hard and sacrificing so much to prove to the world and myself that I could make it as a hard-of-hearing person, everything seemed insurmountable. 

In a little while
I'll be gone
The moment's already passed
Yeah, it's gone

And I'm not here
This isn't happening
I'm not here
I'm not here

-Radiohead "How to Disappear Completely"

I still cannot adequately describe my headspace during these events. Words failed me then, as they do now. In the movie Sound of Metal, Ruben experienced his loss by the simple fading of the crowd and the encroaching of the low, throbbing drone. My experience was more complicated than that. It would be a long time before I came across a song that stitched my disparate and fragmented memories with threads of undulating low end, trebly screeches, pulsing frequencies, and distant, indecipherable voices from the point of no return. This is not a song as most people understand them to be. This piece has traces of accidental musical notes underneath a burgeoning discord. The lyrics are crushed beyond recognition. Thanks to the kindness of Andrew Grant/The Vomit Arsonist, I have created a video of his song “no one can help you”, with the lyrics in the description (link to “No one can help you” video). Whether you wish to experience this or not, you have the choice that I never had.



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

Smiling white man sits at a table with a model of the human ear in front of him. He wears black sweater and behind him are shuttered windows. The text on the right reads " Cochlear implants are not my thing... yet" On the left "the Eagle Ear Blog' is written below The Mind Hears logo.

Cochlear implants are not my thing… yet

— Henry

This is a repost from Dr. Henry Adler’s blog, The Eagle Ear, where he chronicles his career and deafness. ‘Cochlear implants are not my thing… yet‘ was originally posted at The Eagle Ear on November 29, 2020.

I was a graduate student at Dr. James Saunders’ laboratory at the University of Pennsylvania in the late 1980s and early 1990s.  At that time, the laboratory focused on both the structural and functional aspects of hearing loss and recovery in chickens.  The laboratory had other research interests such as the structural aspects of middle ear bone development in small mammals, but that’s beside the point.

I was the first deaf graduate student at UPenn’s own Biomedical Graduate Group – I entered there with an undeclared major in the fall of 1989.  My initial plan was to major in pathology but I eventually got my doctorate in Neuroscience. That’s been already explained in an earlier blog (Why I chose Neuroscience over Marine Biology – August 17, 2020).

It was an unusual time for me and anyone involved in inner ear research for different reasons.

As for me, I was probably one of very few scientists with a congenital hearing loss, perhaps the first deaf scientist who attended any meeting of the Association for Research in Otolaryngology (ARO).  Yes, there had been a few others with hearing loss who had attended such a meeting, but none of them was born with a hearing loss or had hearing loss at an early age.

As for other ARO members, well, many, if not all, of them had originally focused on helping ameliorate the effects of hearing loss on everyday life.  Such focus had involved learning how to treat or even cure hearing loss.  When they either met or heard about me, they’d say, “Whoa!”  They must’ve been struck by the possibility that maybe a deaf individual might want not only to learn about the functional and structural aspects of hearing loss in all animals including human beings but also to consider treatment for his own hearing loss so that he could fit better into the Hearing Research community.

Well, as I described in an early blog (‘You have a bad attitude’ – August 17, 2022), the answer is no.

For several years when I was at Jim’s laboratory, I had worked with him, fellow graduate students, medical students doing rotations, residents in otolaryngology and other visiting scientists.  Some, if not all, had tried to pressure me into having a cochlear implant, either seriously or in a fun way.  I always brushed them off.

Nearing the end of my graduate studies, I was working on my Ph.D. dissertation.  Naturally, I was under immense pressure to finish it off before my dissertation defense, but I also was able to relax a bit when I could take a few moments to do so.  One of them took place at the laboratory when I believe we all had a lunch break, maybe for a pizza or dessert break.  Jim and all his graduate students were chatting back and forth, and of course I couldn’t grasp all of what they were talking about.  Somehow, Jim commented something about cochlear implants, and I finally blew up on him.  Jim realized how serious I was about not having a cochlear implant, even though the point he was making was not about my decision not to have a cochlear implant but was made in general.  But at that time, I thought he was talking about me.  Hence the loss of my temper.

A few weeks later when it was time to orally present and defend my dissertation, my parents and my fiancée Denise came to watch me.  I was nervous as hell – I was rather confident with my approach to present my work but had little, if any, preparation to answer audience questions for several reasons.  

One reason is I didn’t participate much in group discussions about hearing research in general – participants would talk back and forth, and sign language interpreters would try to capture what they were discussing.  Unfortunately they weren’t always successful because they themselves weren’t scientifically proficient.  Another reason is that Jim and/or my fellow graduate students either didn’t have time and/or didn’t know how to prepare me for any question-and-answer sessions.  Even though one of my fellow graduate students had deaf parents, he himself was a very quiet individual. Most of the time, no sign language interpreters or any other accommodations were available at the laboratory.  So, it was OK for me to sit back and let them talk without my having to participate.  No wonder that at least one of my fellow graduate students had felt (and even expressed) that I had been a lazy student.

Let’s go back to my lack of cochlear implantation during my graduate studies.  When I barely passed my dissertation defense (I thought I didn’t pass it, but I wasn’t the only graduate student who had felt that way), we had a lab party.  During the party, Jim had told my parents that I would not be a good candidate for cochlear implantation. He might have based his conclusion on his interactions with me, including my blow-up a few weeks back then.

Several days, months or years later (I don’t remember exactly when), my parents told me about Jim’s mention of my not being a good candidate for cochlear implantation.  At first, I said OK.  Later on, when my parents read my blog (that is, You have a bad attitude), they reminded me of Jim’s assessment of my candidacy.   

Now, only after I had kept (and still keep) hearing from my peers with hearing loss who now wear cochlear implants and are doing well, career-wise, as well as had seen how well my wife Denise is doing with her own cochlear implant, I realize that the lack of candidacy was based on my attitude on cochlear implantation.  It’s not because I’m against cochlear implantation, but because comments from people with whom I’m friendly or in a close relationship have stiffened my resistance against having my own cochlear implant.  Plus, I just have had too many things on my mind, and I don’t want cochlear implants, followed by therapy, to take time away from things I want or need to do.


Biography of Henry J. Adler: I am a Research Assistant Professor at the Center for Hearing and Deafness at the University at Buffalo.  I do research on several fields of Hearing Science — they include (but are not limited to) hearing loss, hyperacusis, and tinnitus, as well as inner ear injury, protection, and repair.  I have been involved in Hearing Research since the early 1990s when I was a graduate student at the Biomedical Graduate Group at the University of Pennsylvania (UPenn).  I have been profoundly deaf since birth and started wearing hearing aids AND speech therapy when I was 15 months old.  I went to the Lexington School for the Deaf in Jackson Heights, NY and then was mainstreamed into the NYC Public School System, which culminated with my entrance into Bronx High School of Science.  Afterwards, I matriculated at Harvard University, majoring in biology, and worked as a research technician at the Massachusetts Eye and Ear Infirmary for two years before entering UPenn.  Within a year after my college graduation, I began to interact with Deaf people and eventually became adept in American Sign Language.  So, I’m not limiting myself to just spoken and sign languages but I aim to maximize my efforts to obtain as much information as I can at both personal and professional levels.  You can learn about my perspectives on the effects of hearing loss on both personal and professional lives of mine via the-eagle-ear.com.

The more I missed, the more I made

RyanSeslow1

-Ryan

I am overcoming a lot of my fears by directly putting myself in positions where I have to talk about how hearing loss and being deaf has affected my life. As a college professor (yep, for 14.5 years now) my job requires me to be in front of a lot of people each and every day. I have been trying to be more direct with my students and colleagues, and tell them how I feel and what I need from them. My honesty about who I am and what I am missing makes getting to mutual feelings of compassion and empathy a little easier. This mutual empathy helps both parties make the emotional connection that I feel is necessary in education.

Often, I have to ask people to repeat themselves, or to speak more slowly, or loudly. I often incorrectly answer questions and everyone laughs or looks at me with a priceless look of confusion. These things also make me laugh as shared misunderstandings create connections and remind me to take myself lighter. That connection is where I begin to know someone, because they would now know me as I am. I need to be more honest and forward about why. It is my responsibility to make people aware of what and how much I am missing. It is natural to seek deeper meaning out of yourself and examine how that applies to the world around you. We grow through such self-discovery as we interpret ourselves in relationship to our time here on this planet. I have, however, learned the hard way that it can slip away all too fast if we hide from ourselves. Hiding only seems to perpetuate more hiding. I often wonder how many other people with severe hearing loss and deafness are out there hiding from their deafness as I used to do?

Dealing with this process of healing and facing my fears (it’s an ongoing process), I recently had an epiphany about my work as an artist. Possibly you are already familiar with my work, but if not, I have been a high-volume output kind of artist for my whole life. My style is to make many things At Once. Volume and production, productions in volumes and accumulation. What a great metaphor, and right under my nose! By connecting my hearing limitations to the question, “Why do I make so much stuff?” or “Why have I put the emphasis on physical output and high volume of works produced?” I suddenly get it. My work habits are all about filling in the fear of how much I have been missing and have missed in this world.

Overcompensation.

I missed a lot beginning in early childhood; and as I grew older, the more I was not hearing the more art I would make. Production and Volume = Missing. The funny part is, most of the art that I make and have made is not dark or representative of my frustration. I do not try to communicate unhappiness, but I do see a huge common thread of a lack of meaning in my work before I became more aware of the impact of my deafness. Subsequently, the context of my art has changed and this plays a huge role in the kind of work that I greatly need and want to produce. The best is really yet to come.

RyanSeslow2

The animations in this post continue to explore the soundless looping GIF format. These pieces begin as digital image fractures and manipulations. They are re-composed and organized as new imagery and content. How does that process play a role in communication? Missing 5-8 words in any sentence can have a profound effect on how one may respond, comprehend or take away from an interaction. What does this look like when that actual missing fragment(s) take place? Repetition is used to display the distortions and metaphors for how this experience may be interpreted visually. If you are a hearing person viewing these animations you may be “missing” the usual audio aspect to the videos you see, watch, and hear each day.

This post is slighted edited from the original on Ryan Seslow’s blog  where you can see more of his art.