DHH Infusion

Finding My Own Way

By Seri Dukart,
Owner, The Grooming Gallery
and North Dakota H&V member

Though I was born hearing, I don’t remember it. I had spinal meningitis when I was six months old, resulting in a progressive hearing loss from age three on.  I consider myself lucky to have survived and have never wallowed in the loss: it is what it is. It has made me the person I am today. Besides, it’s nice to have a real excuse to not have to listen to some people, you know? That and I cannot fathom something: how do people sleep at night without blissful, complete silence I enjoy?

Maybe I should share decibels and audiogram results, but I don’t really get interested in the graphs. I have a profound cookie bite hearing loss, with more hearing when I was younger. The simple facts are that I can’t hear very well with hearing aids, and without them, I can’t hear anything at all. (To be strictly honest, I can hear really loud beeps that no one would ever purposely make outside of a soundbooth.)

The Giant Box

I’ve worn hearing aids since I was five years old, that surprisingly gave me quite a bit of understanding given the severity of my loss.  I need visuals, too, and depended greatly on speechreading and visual cues in daily life.  (I just learned that term “speechreading” – and it fits!) I’ve always loved music, and I would spend hours playing the same songs over and over while I memorized the lyrics and tried to follow along. To this day, my playlist is a bizarre mix of Kenny Rogers, Disney music and rock ballads.  The effort it took to learn to enjoy music was astronomical, but I loved it and the feeling of normalcy I gained from it was priceless.  My favorite song as a child was Kenny Rogers’ Lucille. I only knew the words to the refrain, which is probably a good thing considering the subject matter.

My parents put me in mainstream schools as a child. In grade school, I had speech therapists and was forced to wear an auditory trainer in the classroom.  The speech thing didn’t last too long--one day I informed the counselor that nothing could change the way I spoke. I pronounced things the way I heard them.  Coming from the mouth of a first grader, I imagine this came as a shock. I never had to go to speech again.

The auditory trainer was another story.  This used to be a big, cumbersome box with cords that connected to my hearing aids, not like the personal wireless (mostly stealth) FM units of today. I hated that box with a passion.  It was so heavy and uncomfortable to wear, and useless to me.  No amount of amplification makes a sound any clearer. I relied on speechreading to comprehend, and hearing only the teacher’s voice made me miss out on the goings-on around me, which made me self-conscious and uncomfortable. However, no one really much listens to a kid, so I wore it all through grade school.

I’ll share a little secret with you though – I never turned it on.

Later in middle school, the device featured a coil I wore around my neck under my shirt.  What this meant was that I didn’t even have to WEAR the thing.  I left it in my locker, handed the teacher the microphone, and everyone was happy.   In 8th grade, I finally confessed to my audiologist and my parents that I hadn’t actually used it since I was seven, so couldn’t we just drop it? (I know many kids today benefit from the improved technology.)

Walk a Mile in These Shoes

If I needed help in school, I would ask for it. I didn’t like being hovered over or treated as a person with special needs.  In the 10th grade, I moved to a larger high school, allowing me to blend in and take care of myself, which was exactly what worked for me.  I wouldn’t advise this for every child, but I will share this bit of wisdom with you all--LISTEN to your child.  They know more about not only their needs but their own strengths as well. While there is value in what the experts might say, they are not living my life or walking in these shoes.

I completed a two year degree in commercial arts only to find out after graduation that most jobs require one major skill that I did not have: the ability to hear.  It was difficult to find a job that didn’t require meetings, answering phones, or communicating effectively in large groups of people. There are times in life when trying harder to overcome adversity is great advice, but there also comes a time when you just have to accept and work around your own limitations. I call that common sense, although a few people in my life have called it “lack of motivation.”

The Gift of Not Hearing and Wondering About Technology

While in college, I worked at a dog grooming shop, so I decided to go to grooming school.  The dogs don’t care if you can hear them or not, and frankly, I wasn’t sure how any hearing groomer stayed sane surrounded by barking dogs. Being unable to hear the threatening noises a dog makes when unhappy has made me an expert in reading body language, and I tend to react in a way that dogs respond to better.  This works on people too, in case you ever wondered.  It’s a skill I value greatly.

With the help of my wonderful family and initial support from voc rehab, I had myself a career. In 1998, I opened my own grooming shop, and it is a thriving and successful business today. My college degree helped me promote and advertise my business. Eventually, clients learned the best way to reach me was through text or email. Being in business for myself has been such a positive, confidence growing experience.

Good at Testing

While attending grooming school in 1998, I read an article about a young boy who had a miraculous surgery that allowed him to “hear.”  It was called the cochlear implant.  I was extremely excited, and wanted to check this out.  I immediately made an appointment to see if I qualified for the surgery.

As it turns out, I did not qualify…at first.  I’ve been subjected to hearing tests dozens of times since I was a young child. I could take that test with my eyes closed. (That’s a joke, folks!) I scored something like 90% on comprehension; impossible when considered along with the audiogram, which basically notes “yeah, she’s deaf.”  When the audiologist told me, I let him know I hadn’t understood a single word he had said in the booth.  I recognized the words: I’ve been repeating words like hotdog, ice cream and baseball since the early 80’s. I asked them to use an unfamiliar word list, and I happily scored 0% for comprehension.

When I returned home from the Las Vegas training, my parents and I traveled to Mayo Clinic.  I went through all the necessary testing, toured the clinic, and scheduled my surgery; a surgery I didn’t end up having for another 15 years.

I’m not really sure, even now, why I changed my mind.  Mostly, I was scared of the unknown. I’d done so well for myself thus far…what if it didn’t work? What if I gained nothing in the way of comprehension? Besides, back then the equipment greatly resembled the awful auditory trainer of my youth, with cords and heavy boxes.  Surely it would get better, smaller, more advanced, maybe even cordless in the future? So I spent the next 15 years waiting for some sign that would slap me in the face and say, “Hey, it’s time for you to try this!”

My actual epiphany came with an undramatic appointment with a foot doctor. After the nurse took all my information, she hesitantly told me she had a cochlear implant, and loved it.

And just like that, I was ready. I contacted the University of Minnesota, found an audiologist who could do the screening in Fargo, and set up an appointment.  After 15 years of waiting, suddenly I couldn’t wait another minute to go forward. Unfortunately, the insurance process took exactly a year and a lot of hassle in the way of lost forms and misplaced information, but eventually (with the help of folks in the system) I got my approval. Never give up! Medical insurance approval processes exist to build character. At least that’s what I told myself to curb my extreme impatience.

Nearly a year ago now, my parents walked into the recovery room to find me telling the nurse why snakes make great pets. (I love reptiles and never miss a chance to educate people about them.) I spent two weeks off work healing, anxious for my activation date.  I also spent this time adjusting my expectations.  If I gained even a little bit of comprehension, I was coming out ahead of the game. I fully expected to spend the rest of my life relying on closed captioning on the TV, being unable to use a phone, and needing to see people’s faces and lips in order to understand them.

Breathing, Learning and Ignoring

My activation wasn’t a tearful, video-worthy moment, but it was pretty darn cool.  My audiologist covered his mouth and started saying numbers and months to me.  I shot them right back at him with a growing sense of glee. It was the first time in a long long time that I’ve actually HEARD something, COMPREHENDED a word, rather than the headache-inducing, fill-in-the-blank madness I’ve spent my entire life perfecting.

While waiting for my dad to pick me up after the activation appointment, I stood there pondering the annoying but constant soft sound I kept hearing.  I finally realized it was me--breathing.

Next, I feasted on the new sounds at a store we went to. I giggled at the crinkling plastic packages and the clank and clatter of coins in the cash register.  Never heard these sounds before! We went to a movie that night. Considering how new I was to the whole hearing thing, I stayed up with the action fairly well. (Previously, movies in theaters are $10 naps and an excuse to eat extremely buttery popcorn,)

I arrived home and immediately clipped the nails on my three dogs; the click click click on my hardwood floor drove me insane. I spent long, awkward moments fascinated with things like light switches, the study of the squeak of shoes on the floor, and the sound that fresh sheets make when you snap them over the bed.

Disaster struck on my first day back at work. The dogs barking, which used to be a minor, distant aggravation, became a full blown symphony of ear-splitting howling,  whimpering, crying, whining, shaking, tag-jingling, nail-clicking, sniffling, licking, panting and clawing.  Occasional screams of “SHUT UP!” coming from yours truly would bring about blissful seconds of peace. I considered becoming a monk. Monks are quiet, right?  I went home crying.

This too, got better. I learned to tune out noises instead of soaking everything equally. The hum of electricity, the scratch of pen on paper, the sound of my apparently gigantic feet on the ground, and the tireless working of my own lungs thankfully became things I could tune out.  I learned not to lean too close to the shelves and refrigerators in the grocery store, lest my magnetic processor fly off my head and attach itself to Unidentified Metal Objects. I no longer stop and giggle or stare in awe at perfectly ordinary things, nor retreat home to yank my processor off and bawl at the overwhelming world of sound. I hardly ever say “What?” anymore, which was likely my first word.

This has not been without some side effects: I’ve had some issues with tinnitus and a long bout of vertigo that we are not entirely sure is related to the surgery. I don’t notice the tinnitus much anymore unless my implant is off.

What do I notice I can do differently now? I can drive at night and talk to people in the car nowadays without danger of crashing into random stationary objects while trying to speechread. I’ve made a few short, awkward phone calls. I can watch TV without captions, though prefer to keep them on. I can understand my niece and nephews with ease, along with their jokes and questions, something I’ve always had a lot of trouble with before. When my customers insist on talking to their dogs instead of looking at me, I can still follow their instructions for haircuts. Music sounds a lot better to me now. I only have to listen a few times to get the gist, instead of 300 times.  I love the sound of birds singing, crickets chirping and bubbles. Bubbles sound insanely cool.

I consider myself deaf. I will always have people ask me where my “accent” is from. When I pry this magnetic disk off the side of my head, I am plunged back into complete and total silence.  I rely on my vibrating alarm clock to wake me up and I feel more secure in public places when my near-retirement hearing dog walks beside me. Technology breaks, and batteries need to be charged, and of course one doesn’t wear a processor 24/7, but I’m content to be able to hear most of the hours in a day with the help of my technology. I am, and always will be, deaf.

No regrets about that – it’s made me who I am. And quirky.  Don’t forget the quirky.

Editor’s note: Seri lives and works in Dickinson, ND and writes a Blog about her pets and life experiences at www.thatdarncrab.com. She’s planning on a second implant soon.  Submissions from adults or children sharing perspectives from their own experience as a unique individual who is Deaf or Hard of hearing can be sent to the editor at Editor@handsandvoices.org.