Hey guys! Hope all of my East-coast friends are staying warm and dry in this crazy snow storm!
I don’t know if it’s the snow or what, but I received an incredible surge of inspiration and had a major Eureka moment in regards to the opening chapter of my memoir. I thought a better opening would be something more reflective in which I show what is going through my mind moments before I received my first cochlear implant tied in with flashbacks on my life before I was implanted and the time when I was first diagnosed with profound hearing loss (the yellow brick road chapter).
This needs A LOT of work still, obviously, but I’m pretty happy with the first 1,000 which are the new words that I added today. I am also in the process of interviewing my mom for more details with the original yellow brick road chapter. She said she’d need some time to think about many of the questions I had as she tries to remember, but I’m hoping to get some answers from her soon to better flesh out that chapter/add more details.
Regardless, I hope you enjoy the revised opening chapter. Feel free to leave a comment on this post letting me know what you think!
Entering Into a Technicolor World of Hearing
I’m lying in a hospital bed at Jefferson University hospital in Philadelphia. There is an IV inserted in my right arm and Mom is standing to my left. Dad, who has never been a fan of hospitals, is outside in the waiting room. Everything looks like your typical hospital setting except for two things:
- I am not sick or injured.
- I cannot stop smiling.
My journey begins now. Today I will receive my first cochlear implant, and if all goes well with the surgery and recovery, next month I will be activated and Lord-willing, hear, like a normal hearing person, for the first time in my life.
If this works, my black and white and sometimes sepia world will become technicolor and I will not just hear the sounds I’ve always heard, but I will be able to understand what those sounds are and hear them the way they are supposed to sound. Conversations will sound like actual conversations (without me needing to exhaust myself by practicing heavy lipreading). I’ll know when music is playing, and it will sound like actual music. I may even be able to hear what a flute sounds like. I’ll be able to go to the movies without having to awkwardly ask for a pair of caption glasses which A. The ticket salesman won’t understand, or B. won’t work anyway. After the movies, I may be able to go out to dinner with my friends or a date and order my own food without awkwardly staring at another person as if to say, “Please lend me your ears, I can’t hear a thing the waiter is saying.”
If this works, my world will forever change, hopefully for the better.
If this doesn’t work, I risk losing the approximately 7% total residual or natural hearing I have left in my left ear. This residual hearing is currently being amplified by hearing aids.
Amplify [am-pluh-fahy]. Verb. – Increase the volume of (sound).
Notice how it doesn’t say anything about clarity or being able to understand or comprehend what those sounds are. That’s what’s missing. Hearing aids amplify sound, but they don’t give me any clarity. My cochlear implant is supposed to fix that. But if it doesn’t work, I’ll lose my ability to even amplify sounds. I’ll be left with absolutely nothing in my left ear — silence.
I made a list of the things I want to do post-cochlear implant activation, should this work. It looks like this:
THINGS TO DO POST-COCHLEAR IMPLANT ACTIVATION
- Get caught in the rain.
- Experience church in a whole new way.
- Watch movies without captions.
- See a movie at the drive-in.
- Hear a flute, bell, violin, and any other instrument I couldn’t hear before.
- See an orchestra.
- See a play.
- See a ballet.
- Listen to Pink Floyd’s “Dark Side of the Moon” in its entirety.
- Talk on the phone.
- Order food out on my own (restaurant and takeout/Dunkin).
- See a concert (preferably Good Charlotte).
- Hear my cat meow.
- Listen to the radio.
- Hear a cricket chirp.
I didn’t even want to think about what my life would look like if the cochlear implant didn’t work. Would I be forced to learn ASL? Would I join the Deaf community? Could I manage to get by with the remaining, un-implanted ear? Thinking about what would happen if the cochlear implant worked was fun but thinking about the alternatives was terrifying.
I had faith and trust in God that the cochlear implant would work. I prayed constantly and attended church as much as three times in a single day. For the weeks leading up to this day I had both Gloucester County Community Church and Washington Baptist Church praying for and with me and even met with the deacons and deaconesses at both churches.
“God is going to give you an incredible gift. Now it’s your job to figure out how you can use it to serve the Lord,” the deaconess at whose name I cannot recall told me as I met with her in the chapel at GCCC.
I was so excited to begin my new life as a hearing person that as the date of my surgery came closer, sleep became more and more difficult. I’d stay up for 20 or more hours at a time, keeping myself busy by binge watching all 9 seasons of How I Met Your Mother and when I got bored of that, I’d clean everything in sight. I no longer had any concept of time.
“Do you really have to clean your toilet at 3 in the morning? I’m trying to sleep and all I can hear is your toilet flushing,” Mom complained.
“No more cleaning. I don’t wish to smell all of your chemicals first thing in the morning,” Dad pleaded.
Last night, I could hardly sleep at all. The Patriots played the late night 8:15pm game against the Colts.
“Don’t stay up too late, you have a big day tomorrow. You know the Patriots are going to win anyway,” Mom warned.
“Oh, let her stay up. She’s just going to sleep through the surgery anyway. Does it matter if she’s tired?” Dad said.
I stayed up for the whole game and then spent most of the rest of the night in bed, browsing Facebook, Twitter, and Instagram on my phone. By 5:30 AM, I was wide awake, dressed in my brand-new button down fleece pajamas (mom said there was no sense in wearing real clothes, I’d be better off being comfortable and I’d need to wear button downs to avoid pulling shirts over my head post-surgery anyway), and ready, a full two and a half hours before I was scheduled for surgery.
Now the day is finally here. Dr. Wilcox just came in to tell me everything would be okay and to instruct the anesthesia team to begin. I have a plastic mask on my face, covering my mouth and nose. I can hardly keep my eyes open anymore as I feel my body surrender itself to the anesthesia.
When I wake up, I’ll be a cyborg.
In another month, I’ll be activated, and I’ll finally be able to hear, Lord-willing.
If this works, I’ll be able to hear for the first time in my life, or at least, the first time since my mother discovered I was deaf at the mere age of two.
When I was two, Mom would call out my name, but I never responded. When she mentioned it to my pediatrician during my next checkup, the pediatrician thought it was just a phase or a case of the “terrible twos”.
“No, I know my daughter. She can’t hear me,” Mom would argue.
When my mom clapped behind my back and I didn’t flinch, she knew something was wrong. Against my pediatrician’s advice, my mom took me to see Miss Terri, an audiologist at Cooper Hospital in Camden, New Jersey.
After performing a series of hearing test, Miss Terri confirmed what we already knew: I had hearing loss. What we didn’t realize was how severe my hearing loss was. Miss Terri explained that my hearing loss was profound, meaning the only sounds I could hear were those that were at a volume of 90db or higher such as airplanes, helicopters, firetrucks, and possibly a lawn mower. Hearing aids were recommended to amplify these sounds, but my ability to hear and comprehend sounds, even when amplified, would always be a challenge.
After being diagnosed with profound hearing loss, I made the journey to Camden once every two weeks for speech therapy lessons. Mom and I would drive from our small condo in Washington Township to the big city every other week. On our way in, we’d pass endless food and street vendors selling everything from hot dogs to pretzels and even random t-shirts. It amazed me how at 9 o’clock in the morning people would still be out selling lunch foods. Everyone always had a smile on their face and seemed happy to be working.
“Mom, I want to live here one day. I love the city,” I said on our way in for my appointment.
“That’s because you don’t understand what this city is really like. It’s not safe,” Mom explained. I’d understand it more when I got older and would see individuals hauled off by police for God knows why on more than one occasion. But as a child, it was a magical place with audiologists and speech therapists that thought the world of me and were helping me to hear and speak well.
Cooper Hospital had many departments and was easy to get lost in. Fortunately, they developed a system to help speech and audiology patients find their way around. By placing strips of yellow tape on the floor, patients could simply “follow the yellow brick road” to their appointment. Every time I had an appointment I knew to look down at the floor for that yellow tape and I’d sing along and skip to the tune of, “Follow, follow, follow follow follow the yellow brick road!”
Since speech and hearing worked so closely together, my appointments were run by both my audiologist, Miss Terri, and my speech therapist, Miss Vicki.
Miss Terri would always start my appointments by testing my hearing. She would lead me into a gray, audiology testing booth that was no more than 50 feet wide while my mom waited and watched outside in the hall. Miss Terri would then crookedly place a special pair of headphones over my ears and hook some wires up to my hearing aids and hand me a button.
“First we’re going to test the beeps. Push the button whenever you hear a beep. We’ll start with your left ear first before moving to the right,” Miss Terri explained.
I’d smile and nod and occasionally give a thumbs up to let her know I understood. I loved pressing that button. It felt like I was playing a video game where hitting the button was the equivalent of shooting the monsters and bad guys and freeing the victims. I never even noticed that the button didn’t get pushed half as often as it should have.
Once that portion of my hearing test was completed, I would be given a series of words that I’d have to say back.
“Say the word hot dog,” Miss Terri said.
“Hot dog,” I answered.
“Say the word baseball.”
“Say the word airplane.”
“Say the word ice cream.”
“Terri, I’m sorry but I have to stop you,” mom interrupted.
Miss Terri and I both looked up. I was doing so well with the words, what could possibly be wrong?
“She’s not actually hearing you – she’s reading your lips,” said mom.
“I can fix that,” Terri said as she grabbed the sheet of paper with her word list.
“I’m going to cover my lips now. I want you to focus on what you hear, not on me.” Miss Terri said. I was nervous, but knew I had no choice but to try my best. I nodded in agreement.
“Say the word kite.’
“Say the word chair.”
“Say the word sub.”
“Say the word third.”
“Say the word ran.”
I didn’t know what Miss Terri was saying, I could only guess, but I knew I was wrong.
When Miss Terri finished with the hearing test, it was on to either Miss Vicki for speech therapy where we would do different activities. One of my favorites involved using what I liked to refer to as the “magic mirror”. It was a long, oval-shaped mirror that rested in a tan wooden frame on wheels. There was nothing actually magical about it; it was just a regular mirror that I was allowed to draw on with magic markers, but I always loved this activity. I was never allowed to draw on the mirrors at home. I thought that this mirror was special since I could draw on it and the markers would wipe right off when I was done. As a two-year-old, the only logical explanation for how this could work was that it must have been magic.
Before I could draw on the mirror, Miss Vicki put me to work by having me practice my speech.
“Okay. Let’s practice our “Sh” and “Ch” sounds,” she’d say. “We’ll start wi“Sh!” I said. It was easy for me to think of the sound as a syllable, as if Miss Vicki was the teacher and I the student, getting yelled at for talking.
“Very good!” she said. “Now, I’m going to give you a word. Can you say “choose”?
“Shoes!” I said.
“No, not shoes like on your feet. Choose like when you choose something to eat,” she said.
“Shoes!” I said.
“No, look in the mirror. You want to move your tongue up a little bit and touch your teeth,” she said.
“Tooze,” I said.
“Try again. Remember, you only want to touch your teeth a little bit, not a lot.”
“Choose?” I said.
“Yes, that’s right! Very good! Want to take a break and draw on the magic mirror?” she asked.
I nodded yes and reached for the bucket of magic markers, choosing the pink one first, my favorite color. I drew a big heart on the mirror with several smaller hearts for arms, legs, and even eyes. My little heart person, my favorite thing to draw.
When I finished my masterpiece, Miss Vicki would continue with our lesson.
“Okay, Kimmy. We’re going to play a game now,” Vicki said.
“You’re going to take this ball and throw into the trashcan across the room. But as you throw the ball, I’m going to give you a word to say and I want you to imagine your voice going with that ball. As you throw the ball you’ll want your voice to get louder. Got it?” she said.
I nodded. I wasn’t sure if I really understood, but the idea of throwing a playing a game sounded like fun. The game sounded like basketball, a game I’ve always enjoyed watching my dad play.
“Okay. Your first word is suitcase,” she said.
“Suitcase,” I whispered as I threw the ball.
Vicki threw the ball back to me. “Try again,” She said. “Remember, Mr. Loud Mouth. Your voice travels with the ball.”
I took the ball back from her and paused as I remembered Mr. Loud Mouth. “SUIT CASE,” I said.
“Very nice! You got it!” she said.
Being a toddler with profound hearing loss was easy. Nobody asked any questions about my hearing loss or questioned anything that I did or didn’t do. My parents couldn’t have been more supportive and understanding of my hearing loss. My sister paid no mind to it. And my audiologist and speech therapists couldn’t help me enough. I was a toddler without a care in the world. The only thing that made me different from any other toddler in the world was the fact that I couldn’t hear. I was able to live my life in black and white or sometimes sepia. My world was full, but not always beautiful or complete. The older I got the more I realized that living as a deaf girl in a hearing world was a lot like living in a world without color.
Hey guys! It’s been awhile. Thanks to being sick with a really weird ear infection (the inner corner of my ear is blistered/inflamed…) I’ve been home bound with a lot of free time this week, so I figured I’d give you all an update.
My MA project is…going. It’s crazy how soon symposium is coming up. I feel so not ready for that, but it’s a month and a half away whether I’m ready or not. It’s definitely crunch time and that means making some hard decisions, too. Among the hardest of decisions was the decision to fire my original second reader. I’d rather not go into details about that decision other than to say it simply wasn’t working for me and I needed more. Fortunately, Professor Block assigned me Katie Budris as a new second reader and everything’s been going much better ever since then, but there’s still a lot of work to be done.
My main focus has been on my travel chapters lately. Travel is something that was difficult if not impossible pre-cochlear implants, but since getting implants I’ve been to Disney, Nashville, Chicago, Langhorne, and will very likely be traveling to St. Louis in May. Travel has definitely become very important to me since getting my implants so I really wanted to highlight that in my memoir. However, it’s been a challenge to figure out the best way to approach this topic. I initially only had one chapter on Nashville, but it felt really out of place. Then I tried to write two chapters on Disney…one before cochlear implants and one after cochlear implants. That felt redundant and Professor Block didn’t think I needed the post-cochlear implant Disney chapter at all since he felt it didn’t really add anything to the story.
In my most recent revision which is below for your reading pleasure, I combined both Disney chapters together and re-wrote 90% of the Nashville chapter and combined that in here as well.
Please note this is very much still a rough draft. Some things I want to work on with my next few drafts include my shift in time periods/tenses and transitions between pre-post cochlear implant stories.
As always, I hope you enjoy reading my story and I welcome your feedback!
Traveling Through the Sound Waves of Life
I didn’t sleep at all the night before my high school senior trip to Disney World because I was too excited. I never really been anywhere without my parents before, unless you count sleeping over my Aunt Christ and Uncle Don’s house in Riverside when I was a child (which I don’t). Sure, I wouldn’t really be alone, but just the idea of being away from my parent’s control and in a new city and even taking a flight was cause enough for excitement. Plus, I never been to Florida before.
I never quite understood why so many people hated flying or were afraid of it. I never been on a plane before, but the idea of being up thousands of miles high above the sky thrilled me. I was a little nervous about going through airport security. After all, this was post 9/11 and I heard horror stories on how crazy airport security could be, but even that I was able to brush off as not being a very big deal.
Woodbury High School always did a fantastic job with working with me and my hearing loss. Everyone always knew to speak loudly and to let me see them, so I could read their lips. My mom also instructed me to make sure I always stayed with someone at all times, so they could be my ears, she meant.
“Everyone get out your ID and have them in your hand along with your plane tickets. Everyone must have both in their hands to go through the luggage check. I should not see anyone struggling to find either item and holding up the line at the luggage check,” Mr. Shivers commanded.
I grabbed out both items from my wallet as instructed and clenched them in my fist and allowed my eyes to gaze back and forth between our three main chaperones: Mr. Shivers, Mrs. DiRenzio, and Mr. Cannulli. I kept my eyes fixated on the three of them, fearing that if I so much as blinked I’d miss important instructions which would cause me to miss my flight and the trip at whole.
“Okay, everyone make sure you have your IDs and plane tickets ready and follow me!” Mrs. DiRenzio instructed in a much more pleasant tone than Mr. Shivers.
I followed her behind the rest of my classmates as instructed. I examined each student in front of me as they displayed their IDs to the luggage check attendants along with their plane tickets. I watched them as they lifted their luggage up on a scale, tagged it, and then placed it on the conveyor belt.
Okay. Display ID, place luggage on scale, tag it, and place on the conveyor belt. I got this, I told myself.
Getting through the luggage check was easy enough. I figured that the rest of the airport would be just as easy. Maybe this isn’t as bad as everyone makes it out to be after all, I thought.
I looked for Mrs. DiRenzio in the sea of faces and followed her along with the rest of my classmates as she helped to lead everyone upstairs to the security line. I watched as the people in front of me held out their IDs and plane tickets. I watched as people took off their shoes, belts, and jewelry. I found it strange that people had to remove their shoes. It seemed impossible to me that anyone could hide a bomb in such a small place, but apparently, it’s already happened before.
“EVERYONE TAKE OFF YOUR SHOES AND KEEP YOUR ID AND PLANE TICKET IN YOUR HANDS. REMOVE BELTS AND JEWELRY. DON’T HOLD UP THE LINE. KEEP MOVING,” Mr. Shivers yelled to the crowd of students. I’ve been concentrating so much on Mrs. DiRenzio that I didn’t even notice that he was already upstairs. Mr. Cannuli must be the only one left downstairs, I thought.
I already had my ID and plane ticket in my hand along with my carry-on strapped to my back. I didn’t have on a belt or any jewelry, so I assumed I was safe as far as metal items were concerned. I untied my shoes and took them off and carried them in my hands and moved forward in line, waiting for my turn.
As the line moved closer to the security check point, I could see the people in front of me grabbing bins to place their shoes and belongings in. As soon as the bins were within reach I grabbed one to place my shoes, cell phone, and, carry on in.
Nice and easy. I’m almost done. This isn’t bad at all, I thought.
I was wrong. Very very very wrong.
Once I walked through the body scanner, the alarm sounded. Metal.
Except, I couldn’t hear the metal detector go off. It made a high-pitched beeping sound that was out of the range of my hearing capabilities.
“I need you to stand over here,” the security guard said as she pointed away from the line.
“Wait — what’s happening?” I said as I felt my face get hot. All of my classmates and everyone else still in line was staring at me.
“Point out your items,” she said. Except I couldn’t hear her. Puh. Items.”
“What? I’m sorry, I can’t hear you,” I explained.
“Puh,” she repeated.
“I’m sorry I’m hearing impaired,” I said.
Mrs. Direnzio came to my rescue to see what was going on. I was about ready to burst into tears. What was that woman saying? Why was everyone staring at me as if I was some sort of a criminal?
“Kim, do you have on a belt, any jewelry, or anything metal?” she asked. She pointed to her waist and her wrist as make-shift signs, so I’d be able to understand what she meant.
“No, I don’t have anything on,” I said.
I saw her ask the security guard a question that I can only assume was something along the lines of, “What do you need her to do?”
The security guard relayed a message back to Mrs. DiRenzio and she repeated it to me. “Kim, she needs you to point out your things. Which items on the conveyor belt are yours?”
“Okay, is that everything?” she asked.
“Kim, you set off the metal detector, but don’t worry it’s okay. It happens. You’re not in trouble. They just need to do a pat down and move their wand over your body,” she explained.
I nodded. I didn’t hear all of what she said, but it looked like she was signaling that they had to search me for something. Did they think I had a weapon? I was scared.
The female security guard explained to me that she would be patting down my entire body including my breasts, buttocks, and in between my legs. She asked me if I understood, so I nodded. I’m not entirely sure what is going on, but I just want to go to Disney, I thought.
The next thing I knew the woman was groping every inch of my body. She did exactly what she told me she was going to do, but it still felt so wrong. I felt as if she was violating me, even though I knew in the back of my head she was only doing her job. My classmates stood by and watched. I was humiliated.
After she finished patting me down, she ran a hand scanner over my body again. It was still going off, but I could not hear it. I watched as the lights flashed on the scanner. Something was wrong.
She ran it through again, this time more slowly. She stopped when she reached my head.
“Are you wearing any earrings or jewelry?” she asked.
“No,” I said.
“She has hearing aids, could that be it?” Mrs. DiRenzio asked.
“Possibly,” the security guard said.
“Do your hearing aids contain any metal? Mrs. DiRenzio asked.
“Nnnn-ot really. But they take batteries which have metal.” I said, my voice trembling in fear.
“Can you take those off for me?” the security guard asked.
I nodded and pulled both hearing aids out of my ears. I looked at Mrs. DiRenzio for approval.
“You can sit them down here for a minute,” she said as she pointed to a small counter.
I placed my hearing aids on the counter and then spread out my legs and arms as instructed. The security guard once again waved her hand scanner across my body. Except this time, it never flashed or set off any alarms.
“That must be it. Okay you’re good to go,” she said.
Mrs. DiRenzio lead me to where my items were and I put my shoes back on and gathered my things. I apologized to my classmates for the delay.
“Don’t worry about it,” Mrs. DiRenzio said. “Are you okay?”
I nodded, although I still wanted to cry out of humiliation. This has been the worst experience of my life.
“Don’t worry. You’ll be in Disney soon. The worst is over!” she said.
I smiled. She’s right. Soon I’ll be in Disney, the most magical place on Earth, I thought.
But it turns out, the trouble was only just beginning.
I tried my best to just stay with my group and my roommate Sam. I figured so long as I followed them I’d be fine.
This philosophy worked well at first. We went exploring in Magic Kingdom and took a bunch of photos at Cinderella’s castle together. We also enjoyed the spinning tea cups, Space Mountain, and Buzz Lightyear’s Space Ranger Spin. It was an estimated 100 degrees in Florida that day, so the parks weren’t at all crowded and the lines were short except for the more popular attractions like Buzz Lightyear’s Space Ranger Spin, but even that wasn’t too long of a wait.
When my group decided that they wanted to go on the Dumbo the Flying Elephant ride, I decided to pass. I’ve never been much a fan of rides that spin like that, probably due to my fear of heights, so I decided to wait for them. Besides, I spotted a souvenir stand that was selling unique black and white baseball hats featuring Walt Disney with Mickey Mouse. I thought it would make the perfect gift to bring back home to my dad.
I walked up to the stand and took a closer look at the baseball hats and made a purchase. Then I began to walk back to the Dumbo the Flying Elephant ride in search of my group. I figured the ride should be over by that point.
I looked all around, but I didn’t recognize any of the faces. I walked around and around and around the ride, but I had no luck.
Why didn’t they wait for me? They were supposed to wait for me. I thought.
I grabbed out my phone to check the time. It was nearing 12:30 and we were supposed to meet back at the gate for check in by 1. Well, I better get going back anyway. I thought before making my way back.
There was just one major problem:
I couldn’t remember my way back.
Was I supposed to move forward? Go backwards? Left? Right? I had no idea. I remembered seeing the different characters carved out of bushes and shrubs by the entrance. If I could find them again, I’d be in the right area. I looked around me…nope, no shrubs or bushes or characters in sight.
I decided to just go back. Going back rather than forward sounded right. After all, it would be going backwards from where we came, right?
I walked and I walked and I walked. My feet were achy and blistered and I was soaked in sweat and beginning to dehydrate. The 100 degree Florida weather and the hot Florida sun rays were really beginning to take their toll on me, but I needed to get back to the entrance for check in, so I kept walking.
I looked down at my phone again. It was now 1:03. I was already late. Time to ask for help.
I stopped at a souvenir stand, similar to the one that sold the Mickey Mouse hats that got me into this whole mess and I asked the man, “Excuse me. Excuse me sir, can you tell me how I can get back to the main gate?”
The man was not American; I’d guess and say he was either Mexican or Indian and he spoke broken English. That mixed with my deafness meant that I couldn’t understand a word he said. Still, I thanked him for his time and pretended I knew exactly where to go.
I kept walking until I found another souvenir stand to ask for help, but it was just the same experience all over again. Finally, I pulled out my cellphone and called my mom’s work. I didn’t know how she would help being that I was in Florida and she was back home in New Jersey, but I also knew that she was Mom and Mom could do anything.
Before she even said, “Hi” she asked me, “What’s wrong?”
I began to sob. I told her how I was lost and I was missing check in but only because I couldn’t find the gate and how I got lost because my group didn’t wait for me after riding Dumbo the Flying Elephant. I cried about how I was afraid I’d get in trouble and not be allowed out tomorrow or worse – that I’d be sent home for missing check in. I was so scared, and I just let all of my emotions pour out.
“Relax. Ask someone for help,” she said.
“I tried and I can’t hear them,” I cried.
“Kim I’m in NJ. I can’t help you. Where are you at now?” she asked.
“I don’t know. By a stand or something,” I said.
“Okay the doctor is going to look up a map of Magic Kingdom on his work computer and try to help you. We will call you back. Stay where you are.” She said.
A few minutes later I received another phone call from my mom’s boss, Dr. Roth, but I could not hear him.
“Hello? I said. Are you there?” I can’t hear you.
I heard my mom in the background; they must have put the phone on speaker.
“Kim, Dr. Roth is on the phone. He’s trying to help you.”
“Hi Kim, I want you to go.”
“Wait? What? I can’t hear you,” I said.
“I’m sorry, what?”
“Kim, just go.”
I began to cry again. I was so scared. I couldn’t hear a word that anyone was saying, and I was lost in not only a new place, but a whole new state. I felt completely helpless.
I hung up the phone and kept walking, in what felt like circles. I passed Buzz Lightyear’s Space Ranger Spin for what felt like the hundredth time along with the spinning swings. I lost count of the number of helpless souvenir stands I passed. Why was it that the more I walked, the further away I felt? Still, I kept trying, hoping that even if I didn’t make it to the gate, I’d find someone I recognized that could take me there.
After approximately another twenty minutes, my wish came true and I found Mrs. DiRenzio.
“What happened?” she asked.
“My group wanted to go on a ride and I didn’t want to go on it, so I was waiting for them and as I was waiting I stopped by a souvenir shop and when I came back they were gone and I kept trying to get back, but I couldn’t find my way. I am so so so sorry. I know I missed check in, but I’ve been trying to get back since around 12:30.”
“It’s okay. You’re not in any trouble. Just try to do a better job of staying with and communicating with your group next time,” she said. I nodded to let her know I understood.
When we finally arrived back to the gate I apologized to my classmates for keeping them waiting. Then we took our class photo in front of the bushes that were carved into Mickey and Minnie and the sign welcoming us to Disney before receiving information on our next steps such as when and where to meet up for the next check in and when the buses would arrive to take us back at the hotel. I couldn’t hear anything, so I just nodded and made a mental note to ask someone in my group later, or to just follow everyone else. I knew one thing for certain was that I wouldn’t leave anyone ever again. If they went on a ride, so would I. If they went to a shop, so would I. If they went to the bathroom, even if I didn’t have to go, so would I. I wasn’t going to risk getting lost again.
It’s April 11, 2017. It has been over two years since my first cochlear implant, and one since going bilateral. I am sitting at a table making small talk with Kerry Flynn, the Business Editor at Mashable, while sipping away at a bottle of Coors Light and eating an assortment of southern food in the beautiful and historic Bell Tower located in the heart of Nashville. Our conversation feels forced and she is looking at me weird for asking her whether she knows my old high school classmate, Natalie DiBlasio. I regret asking her this question immediately after it slips from my lips. Of course she doesn’t know Natalie. Natalie’s never worked for Mashable…she works for Wired; Mashable’s top competitor, I think. Still, despite my nerves and awkwardness I am stoked to be talking to someone who works for Mashable, and I even have a photo of us together to bring back home to all of the people who would never believe that this night actually happened.
Kerry isn’t the only important person I’ve met tonight. I also chugged shots of Tennessee whiskey with Leah Schultz, the Social Media Manager at Papa Johns along with Scott Plocharcyk, Director of Business Development and Micah Donahue, Leads Brand Engagement Strategy both at Mechanica. Out of all of the people I’ve met at this conference so far, Leah has been my favorite. She only looks at the most a few years older than me, but she is insanely smart. The key takeaway I’ve gotten from her presentations on social listening has been to HAVE FUN on social media and to not worry so much about politics. Penn could sure learn a thing or two from her, I thought.
Scott and Micah are both very nice to me and seem to be following me everywhere, but I can’t tell how sincere they are. Do they actually like me for who I am, or do they like me because I work for Penn Medicine? I only like Kerry because she works at Mashable, but that’s obvious by our forced conversation. The conversation with Scott and Micah flows naturally, but I can’t help but feel this is only because A. They want me to tell my boss about Mechanica so they can earn a new client, or B. They are fascinated in my cochlear implants because they’ve never seen them before. I decide that it doesn’t matter either way; the fact that I am able to talk to business professionals, let alone drink whiskey with them, in a crowded bar with a cover band playing Journey’s “Don’t Stop Believing” is pretty amazing in and of itself.
I don’t remember much about what Leah, Scott, Micah, and I talked about that night other than our jobs and responsibilities and my cochlear implants. I blame all of the alcohol on my foggy memory, after all, I’m pretty sure there wasn’t a moment throughout the entire conference when I didn’t have either a beer, glass of champagne, or shot of whiskey in hand (I’m not sure if the purpose of the conference was to teach us about an unenterprised approach to social media marketing or what type of alcohol was the best to drink in Nashville…to this day the topic is still open to debate), but I do remember how proud I was to be holding conversations and networking with so many top business executives and to not have to say “What?” or “I’m sorry, can you repeat yourself?” every .02 seconds. I was proud to be doing this all on my own, without my mother holding my hand or the need to look at a co-worker or manager for approval. As each glass of alcohol ran through my veins I felt myself loosening up more and more and I finally felt free – free to be whoever I wanted to be in a brand new city filled with new people. Free to hear the music that constantly played throughout the capital of country music. Free to be a deaf girl in a hearing world, and free in my knowledge that my deafness no longer mattered one iota.
Originally, Mom and Dad were both hesitant to allow me to go on this trip.
“I think Mom should go with you. She can help you with the airport and everything and keep you safe. I don’t know anything about Nashville, but I heard that Memphis could be a little rough. I don’t think it’s a good idea to go by yourself,” Dad said.
“I’ll be fine,” I said. “I’ll be with a lot of other people – it’s a big conference. Besides, Penn will only pay for my own airfare and Mom can’t get into the conference…what will she do when I’m working?”
“I’ll hang out in the hotel. I’m sure they have a pool or something,” Mom replied.
“You’re going to spend over $1,000 to hang out alone in a hotel and use the pool?” I asked. The entire thing sounded completely ridiculous.
“I’m fine with it. This way I can help you out. I know how much you hate the airport. Remember Disney?” she asked.
“Yeah, but I’m going to have to figure this out for myself at some point. People at Penn travel all the time. You can’t always come with me,” I said.
“What about your schooling? Will they be okay with you skipping class and cancelling your classes?” my mom asked.
That’s when it hit me: I could use my schooling to my advantage. My parents knew that it had been a challenging semester for me as I began the research process for my MA project. I have been reading, analyzing, and examining everything in sight and growing more and more frustrated from it all in the process. I worked constantly and rarely ever slept anymore. I even ended up accidentally overdosing on caffeine two weeks into the semester. It made sense that they’d worry about me missing this class, but I knew exactly how to get around it.
“Actually, this will count as research for my MA project, so Dr. Kopp is fine with me missing class and Dr. Maxson and Dr. Courtney don’t mind. They know I’m not screwing off, that I have a legitimate reason for missing class and cancelling my students’ classes. It’s all for my MA project,” I lied.
“What? How?” my mom asked.
“We’re allowed to use experiences for our research, so I want to write what it’s like to travel alone with cochlear implants and to fly alone and all of that,” I said.
“But it’s not your first trip with your cochlears. You flew to Disney with Larry right after you were implanted. Isn’t that the same thing?” Dad asked.
“No because I had him there to help me and that’s when I only had one cochlear. Now I have two and I’ve never done anything completely by myself before,” I explained.
“Okay. I still think I should go with you, but I understand why you want to do this. But we’ll see.
“I’ll be fine.” I said, “Besides, Penn only pays for my flight anyway.”
“We have the money. That’s not a problem,” mom said. “I could help you, but I understand why you want to do this.”
“I’ll be fine,” I said. The truth was I was a little bit nervous flying on my own for the first time, but I knew I had to do this for myself just to prove I could do it, if for no other reason. The idea of flying alone to a whole new place also thrilled me. It would be a completely new experience where I could become anyone I wanted to be without the fear of what my friends, family, or anyone else would think. I didn’t even have any co-workers traveling with me, so even work wasn’t much of an issue.
As I partied with the fellow business executives and conference attendees at the Bell Tower that night, I couldn’t help but feel proud. I was proud for finally branching out on my own. Proud for finally doing things without my parents or colleagues around dictating my every move. Proud for making it through not one, but two airports on my own without even being on the verge of an emotional breakdown. Proud for my newfound ability to wander around the 526-square mile town of Nashville on my own without getting lost even once. Proud of my ability to make small talk even in noisy environments and to be able to follow and hear every word.
While I may have felt proud, I also knew better than to allow all of my pride to get to my head. There was another word floating around my mind that triumphed any ounce of pride I may have felt. That word was Blessed.
I was blessed to be having this experience right now, that was due in no small part to my newfound gift of hearing. I knew that this experience wouldn’t have been possible just two years prior before I received my first cochlear implant. I remembered how difficult travel was in the past when I only had my hearing aids and very limited modes of technology on hand to help me out. Now that I could hear, I no longer had to depend so heavily on others to “be my extra set of ears”. I could be my own, independent person. I had an entire world in front of me. The only question I had was Where should I travel to next?
Today I watched Heather Artinian’s Georgetown TEDxGeorgetown Talk, “Not the Hearing or Deaf World”. Heather Artinian was the star of the popular documentary Sound and Fury and its sequel, Sound and Fury: 6 Years Later. As the daughter of two Deaf parents, Heather grew up in Deaf culture and was taught to speak with ASL from an early age. Some of her other family members like her cousin were also deaf, however, they supported and got a cochlear implant (or two, not entirely sure to be honest). While Heather supported Deaf culture and was proud of her cultural heritage, she also had many hearing friends and was eager to be a part of the hearing world. At the mere age of 5, Heather knew that she wanted a cochlear implant.
However, her parents were not fully supportive of her decision. Instead of allowing her to get the cochlear implant, the family moved to Maryland which has many more Deaf individuals than her hometown in New York did. They lived there for about 3 or 4 years until her Mom got very sick and had to go back home to New York. During her time in Maryland Heather grew up in a comfortable Deaf environment where she was taught at a Deaf school and ASL was her primary language.
When Heather returned back to New York ASL was no longer the norm and doing the simplest of things like trying to order food from a restaurant was a difficult and frustrating experience for her and her family. Heather wanted to be able to communicate with her hearing friends and to be a part of their world. This is something I can relate to very much. I feel like in many ways Heather’s story is my story. Anyway, as Heather desired to be a part of their world she once again longed for a cochlear implant and this time her family didn’t fight it on it – they allowed her to get her first cochlear implant when she was 9.
Heather has since went bilateral and she is doing very well. She is a graduate of Georgetown University and currently attending Harvard Law school. In her talk Heather focused on bridging the gap between the deaf and hearing worlds and what I loved is that Heather isn’t concerned in being in either the hearing or the deaf world – she wants to be in the Heather world which is a little bit of each world.
Watching Heather’s Ted Talk honestly made me think about my own life and where I am with always having lived in the hearing world and now wanting to learn ASL. People think it’s weird that I never learned ASL and I never belonged to Deaf culture but I didn’t really know about it since everyone I know is from the hearing world so it makes sense that I would want to be a part of that world. Sometimes I feel almost guilty for not belonging to Deaf culture. I’ve had people in a round about way also say that I’ve turned my back on my own culture or I don’t even know who I am or am supposed to be since I’m so out of tune with Deaf culture. Then there’s another part of me that wonders if I’m doing a disservice by wanting to learn ASL. Is this offensive to the Deaf community? I went my entire life trying to fit in to the hearing world and going bilateral and I think being able to hear now is the greatest thing ever and sometimes it’s mind-boggling to comprehend that some people wouldn’t want to hear even if they have the ability to with cochlear implants…and yet here I am after going bilateral wanting to learn ASL and join in the Deaf world. Is this okay or is this cultural appropriation? Have I’ve been missing out on a big portion of my life by not belonging to this culture that I maybe should have been born into? Has my entire life been a mistake for choosing not to belong to this culture? There’s so many questions I don’t have the answers to and may never have the answers to.
Why do I want to learn ASL and why now? Maybe it is because I wonder if maybe I’m missing out on something. Maybe I do want to join in with Deaf culture or maybe I just don’t know yet but I at least want to see what is there. That doesn’t mean that I’m going to go against or abandon the hearing world I worked so hard to get into. It means that whereas Heather wants to live in the Heather world I want to live in the Kimberly world. I want the best of both worlds. I don’t want it to be hearing world and deaf world – I want it to just be 1 world where everyone can co-exist.
I loved Heather’s Ted Talk. I think she is a very smart girl (she’s studying Law at Harvard after all…) and what she says really makes sense. She doesn’t just reject the hearing world the way some Deaf individuals do (I’m looking at you…Mark Drolsbaugh…) she embraces it. Heather wants to make the best future for herself and she knows that in order to do that she needs to learn to adapt to the world around her and the world around her is primarily hearing. However, Heather didn’t forget where she came from. She was never about abandoning Deaf culture. I do get the impression she prefers the hearing world hence why she chose to live with her grandparents, attend a hearing school, and notably didn’t sign during her presentation, but it will always be a part of her and something she is proud of. Heather successfully balances both world to create one universal world that makes her who she is – Heather Artinian. I think we can learn a lot from her and I look forward to hearing more from her in the future.
I was so inspired by Heather that I sent her the following message on LinkedIn:
My name is Kimberly Erskine and I am an adjunct professor and graduate student at Rowan University in Glassboro, NJ. I was born profoundly deaf but always lived in the hearing world and got by with lipreading until receiving cochlear implants in 2015 and 2016.
For my MA project I am writing a memoir about my cochlear implant experience. I have been doing extensive research on Deaf culture and ASL as well. Some of my research involved watching both of your documentaries. I also just finished watching your Georgetown TedX talk tonight. I just wanted to say you are a huge inspiration for me and I believe many other deaf/Deaf individuals as well. I admire the way you chose for yourself which world to belong to – the Heather world – and how you’re working to build bridges in both the hearing and deaf communities.
I don’t think I ever had a choice but to belong to the hearing world. I was offered to learn ASL at a young age but declined because I didn’t know anyone who was Deaf and learning to adapt to the hearing world made more sense to me. I never knew that Deaf culture was its own thing. Once I got older and began to learn more about it it completely fascinated me though. I am trying to learn more about it and hoping to learn sign language (I am applying to take an ASL class as independent study this Fall) so that I can meet more Deaf people and communicate with them.
I can understand how challenging being in both worlds might be for you at times. Sometimes people look at me weird for never having learned ASL or belonging to Deaf culture. They think that means I don’t know who I really am or they don’t understand my sudden interest in Deaf culture now especially since I can hear with my cochlear implants. Maybe in some ways I’m also still trying to figure it all out. I really loved your Ted Talk though because it was so relateable to me. I saw a lot of myself in you and your presentation.
I honestly really hope Heather responds because I think she is really cool and would like to make friends with her haha. We shall see…
This week I read 1 Corinthians 14 and it made me think a lot about the history of American Sign Language actually. In 1 Corinthians 14, Paul is talking to the church of Corinth about speaking in tongues. He acknowledges the ability to speak in tongues as being a spiritual gift from God, however, he strongly urges the church of Corinth not to practice the speaking of tongues unless everyone can do it. Paul explains this by stating, “He that speaketh in an unknown tongue speaketh not unto men, but unto God: for no man understandeth him; howbeit in the spirit he speaketh mysteries.” Men that possess the spiritual gift of speaking in tongues can use it to speak to God, yes, but they shouldn’t use it to speak with the rest of the congregation because they won’t be able to understand him. When we enter the church it should be to honor and glorify God and to help our brothers and sisters and Christ to do the same and to better come to know God and his words. If we can’t even understand what the members of the body of Christ are saying then how can we really come to know God and learn at church, let alone properly worship him in his home?
Paul went so far as to suggest that speaking in tongues could be the equivalent of just making noise without understanding what that noise actually means in verses 7-11. Here he states:
And even things without life giving sound, whether pipe or harp, except they give a distinction in the sounds, how shall it be known what is piped or harped? For if the trumpet give an uncertain sound, who shall prepare himself to the battle? So likewise ye, except ye utter by the tongue words easy to be understood, how shall it be known what is spoken? For ye shall speak into the air. There are, it may be, so many kinds of voices in the world, and none of them is without signification. Therefore if I know not the meaning of the voice, I shall be unto him that speaketh a barbarian, and he that speaketh shall be a barbarian unto me (1751).
Wow, definitely a lot of things going on in these verses! Let’s look at the first part of this first, verses 7-8:
“And even things without life giving sound, whether pipe or harp, except they give a distinction in the sounds, how shall it be known what is piped or harped? For if the trumpet give an uncertain sound, who shall prepare himself to the battle?”
A deaf person may never hear the sounds of a pipe, harp, or trumpet. You could blow that trumpet as hard as humanly possible and that deaf person may never prepare himself to battle if that’s all he has to go on because he’ll never know. To him, the sound of a trumpet is completely meaningless.
For me prior to getting my cochlear implant, I missed out on many sounds. I’ve discovered many of them since getting my cochlear implants, but every day I am also still learning more and more sounds. It’s not uncommon for me to jump a little in class as a train goes by or someone talks or fidgets or I hear an unknown sound. I’m constantly trying to define the source of the sound and what it means. This is what the congregation must’ve been like back in Paul’s time when they tried to understand what the speaker was saying when he spoke in tongues that they did not understand.
I also relate this to ASL. The Deaf community needs ASL so that they can understand what is being said in the church. To them, the verbal communication means nothing. They have no idea what the pastor is preaching without the use of ASL. They will never hear the gospel or understand the message that day. The pastor might as well be speaking in tongues because they’d never know otherwise. Here, Thomas Gallaudet’s arguments for using sign language in the church makes sense.
But hold that thought…
Thomas Gallaudet and the manualists didn’t just think that the use of sign language in the church would help the deaf to better understand sermons; they took it a step further. Gallaudet along with the other manualists felt that sign language would bring the deaf closer to God. In Tracy Morse’s dissertation, “Saving Grace: Religious Rhetoric in the Deaf Community,” she quotes Douglas Baynton’s Forbidden Signs when she says:
For manualists, this view was interpreted in Protestant terms: sign language was an original language and meant “closer to the Creation,” not inferiority (Baynton “Savages” 98). However, for oralists, sign language was associated with lower evolution or “inferior races” (Baynton Forbidden 9). Oralists made arguments that deaf students needed to learn spoken English and lip reading or they would be viewed as animals or savages (Morse 51).
Now, let’s look back to the scripture and focus on verse 11 which states, “Therefore if I know not the meaning of the voice, I shall be unto him that speaketh a barbarian, and he that speaketh shall be a barbarian unto me.
The word “barbarian” here is what stands out the most to me. Do you know who else really loves the word “barbarian”? Alexander Graham Bell who was NOT a manualist like Thomas Gallaudet, but rather an oralist that believed that the deaf needed to move away from sign language and instead learn to speak verbally and read lips and live in the hearing world.
So, what am I saying here? Do I think that this verse is saying sign language is barbaric? Absolutely not, but at the same time, it could be absolutely so. So it’s a yes and a no for me.
Here is what I think that verse is saying, or what the core message Paul has for the church of Corinth is:
We need to speak in a way that people can understand what we are saying in church so as to not cause confusion or anything that can inhibit man’s understanding of the gospel and man’s ability to honor and glorify the lord.
Back in the time of the church of Corinth, speaking in tongues was a barrier for people in the church because it might have benefited the person speaking it, but it did not benefit the church. Paul is calling for the unity of the church – everyone needs to unite as the body as Christ and work in a way that best serves God and not themselves and that involves speaking a universal language they can all understand.
What does this mean for the deaf in the church? Should they be forced to lip-read and practice the oral method? No. I think the deaf should have a right to hear the sermon in a way that is the most accessible to them. Many churches offer the hearing loop to help hard of hearing and deaf people to hear (depending on the degree of hearing loss of course). If a deaf person needs an interpreter, they should have access to it.
If the majority of church attendees are Deaf and rely on sign language, then perhaps that church should consider doing full sermons primarily in ASL, as that is what will benefit that church and help the attendees to learn and honor and glorify God the best.
We don’t have to worry too much about the speaking of tongues in modern day. 1 Corinthians 13:8 says, “Whether there be tongues they shall cease”. People cannot speak in tongues today (I acknowledge that many claim they do – I have my own feelings on that but I’ll be nice and go the route of “no comment” on that…). I think that whereas the church of Corinth had to worry about the speaking in tongues today our issue is more or less about what language or what style/tone to use in church. I think it all depends on the congregation and choosing what is the most accessible to your church goers.
Going back to the discussion on the deaf community…
In Baynton’s Forbidden Signs he explains how many oralists feared that by relying too heavily on sign language the deaf community would isolate themselves from the rest of the world. He stated:
Like their contemporaries in other fields of reform, oralists worried that the lives of people were diminished by being a part of such communities as the deaf community; they would not, it was feared, fully share in the life of the nation. The deaf community, like ethnic communities, narrowed the minds and outlooks of its members. “The individual must be one with race,” one wrote in words reminiscent of many other Progressive reformers “or he is virtually annihilated”; the chief curse of deafness was “apartness from the life of the world,” and it was just this that oralism was designed to remedy. Apartness was the darkness manualists redefined for a new world (Baynton 32).
Sign language was (and still is) very different from spoken English or any spoken language, really It’s different from what the majority is speaking and when people can’t speak our language, either they or we miss out. Isn’t this the same as what was going on in the church of Corinth in a way? Paul wanted to see the church of Corinth come together to honor, serve, and glorify the Lord and to unite as the body of Christ. Speaking in tongues was something very few church members could do that caused a separation or divide between those who could speak and understand it, and those who could not. It became a distraction that kept people from coming to know God.
Is sign language a distraction that keeps the deaf from doing things in their daily lives? It is obvious that it causes a divide from the hearing and the deaf worlds. In the church, it can make things better for the deaf and I can see how it can strengthen their personal relationships with God, but if we only signed and didn’t speak spoken English, the rest of the congregation would suffer. I don’t see sign language as being a form of language that brings a person closer to God in the sense of it’s a superior or holier language than standard English. I think it’s just another language that for some is their primary and therefore the best and for others is just another language in the world that exists but one they don’t partake in or use in their daily lives.
Hey guys I apologize for the lack of updates. Been a bit crazy over here lately since my surgery, but I’m finally starting to get back into the swing of things today.
I had the surgery for my second cochlear implant for my right ear on November 30th. The procedure was almost identical to how it was with my first one with just a few minor differences. I had to be there a bit earlier for one. I had to be there at 6 in the morning which meant leaving my house by 5. I was pretty tired since I stayed up late that night watching what turned out to be an incredibly disappointing Patriots’ game. After the game I couldn’t fall asleep because I was way too excited.
My mom and I barely slept at all the night before… we were both too excited!
I got to the hospital at 6am on the dot and everything moved very quickly at that point. I had some paperwork to fill out/sign and was taking back to the Emergency room fairly quickly where I changed into my gown and had to answer a series of questions. All of the questions were identical to the ones they asked last year and the answers were the same. I had to give them a urine sample and then they fitted me with my IV. I can never just simply get an IV though. You may remember from my first surgery they had trouble finding my veins and I had to have multiple people try to stick me. They got it in on the first try this time, but might’ve gotten a little too close to the vein. I bled all over the place. For the next two days after the procedure I was trying to clean up dried blood from my IV. I swear I think I bled more from the stupid IV than I did from my actual procedure…
I was really, really excited!
Dr. Willcox’s surgical team and all of the nurses and everyone involved introduced themselves to me and explained what they would be doing. They didn’t need to go into as great of detail as they did last year though since I already knew what they were going to do and I saw many familiar faces. Some of them remembered me, too and were very excited to see me which made everything all the more exciting. I really liked Dr. Willcox’s assistant/the guy who was doing his residency with him. He had a great smile and was pretty attractive. My parents laughed at me when I told them this and said that I “must’ve been pretty high from the drugs they gave me” since he was apparently a lot older than me and “Not that good looking” haha.
I feel like I fell asleep much quicker this time around than I did last time. I don’t have much of a memory of everything before the surgery because I just feel like they put me on the table and I went to sleep. Which makes a lot of sense since I really didn’t get any sleep the night before so I quite tired. I feel like there was less machines hooked up to me, but that could just be because I was asleep and didn’t notice them. I had my cochlear on until I fell asleep at which point Dr. Willcox removed it until after the procedure which made things much better for me. Since I could hear I was able to relax a lot more and they didn’t have to keep telling me to lay down because I wasn’t all anxious to see what they were doing like I was with the first surgery lol.
They took me in for the procedure at 7am and I was back in the recovery room around 11am. I think I woke up around 11:30-12. I was very sleepy and struggled to stay awake. They kept telling me they were waiting to take me back to another room. I asked for my parents and they said they’d bring them up but that they knew I was done and that everything went well.
I felt much better after my surgery aside from being tired compared to how I felt after the first procedure. I didn’t have a sore throat, probably because they used a smaller breathing tube after hearing how I had a sore throat the first time around from the larger breathing tube. I also only felt slightly nauseous and dizzy. I did feel a bit of pain though. At first they only gave me a little bit of pain medicine. They gave me more after making me eat the worst-tasting saltine crackers in the world (seriously why do the crackers at the hospital always taste so bad? That thing was straight up cardboard…staler than stale…yuck!)
After successfully eat the sucky crackers, walking a bit on my own, and having the IV removed (which meant more blood all over the place), I was permitted to change back into my clothes and go home. I’d say I was home around 4 or 5pm. The whole procedure and everything didn’t take long at all.
A Post-Op selfie!
Overall I felt much better and had an easier recovery the second time around. I think the fact that I had 1 cochlear and could hear made things much easier, too. I could watch movies which was a great way to relax.
I did have a set back on the 2nd day post-op though. I had to go back to Jefferson to upgrade my processor from the Naida Q70 to the Naida Q90. It was the last thing I felt like doing and my family and I didn’t think it was a good idea at all to go all the way to Philly 2 days affter surgery, but Advanced Bionics was going to be there since it was an early upgrade limited to very few people (I was one of the lucky chosen ones) and it was the only day I could go and do this, so I didn’t have much of a choice in the manner.
I did okay at first. I was dizzy, so I held my mom’s hand a lot. We took the car rather than the bus because we thought it would be easier/more comfortable for us. I did get pretty tired and didn’t want to be there, but I tried to make the most of it. The Q90 looks and works almost identically to the Q70. It is a little smaller and feels lighter though which I like. One of the biggest differences with it is that the programs are almost all automatic (the exceptions being sound relax and the aqua mic) which I like the idea of. Changing programs can be really annoying. I haven’t been in an environment too much yet where I can really see how it works, but my mom did vacuum and I noticed it blocked out the noise a bit (although I could still here it) and I could carry on a conversation and still listen to music and hear everything with it on which was cool. When the programs switch I can hear it switch over, too. I am excited to go to a crowded, noisy restaurant or something so I can really see how it works. Also, once the other ear is activated I’ll be able to unlock many more features that will allow both ears to work together which will be awesome.
Louisa, the woman from Advanced Bionics (I forget what she said her name was) and Dr. Willcox (we saw him in the hallway) all said I looked great considering I was just 2 days out of surgery. By the end of the appointment I started to get weathered and worn out and very sleepy though. It was an important appointment, but very stupid to go out and do that much so soon after surgery…
I felt okay afterwards, but very tired so I took a nap shortly after getting home. It wasn’t until after dinner when I started to get into trouble. After dinner when I stood up to throw my trash away I suddenly got very lightheaded and everything started to go completely black. I immediately sat back down and had my parents give me a drink of Coke. I took my blood pressure and it was only about 55 for a top number! To give you an idea of how scary this was — it was about the same range as my grandmother’s blood pressure right before she died. My parents were scared of course but we were nervous about calling an ambulance and going to the nearest ER since that for me is Kennedy in South Jersey. Most South Jersey hospitals are awful, and that one is definitely one of the worst. We were afraid to go there and have them mess up Dr. Willcox’s work, so we decided to wait it out and just keep monitoring my BP. I drank more soda and high-sodium energy drinks and put my head down for a bit. We did get my BP back in the 100-range which put me out of the woods, thank the Lord!
After that episode I took it easy for awhile barely doing much of anything besides sleeping, watching movies, coloring, and reading. I wanted to go back to work, working from home, that Thursday but decided it was best to just rest up so I took off for the rest of the week.
By last Saturday I was beginning to get a bit depressed. I felt useless. I wanted to go outside and do things and interact with people, but I knew I had to recover, especially after the whole BP issue. My depression was much better than it was after my first implant though, probably because I could at least hear this time around since I had one cochlear already.
I went back to working from home on Monday. It was a busy day back but it felt so good to be back in the swing of things. I did pretty well being back to work. I just got tired after lunch from my pain medicine and antibiotics, but I took a nap after work and I was fine.
I had my stitches removed on Wednesday. I was supposed to get them out on Thursday with Dr. Pelosi, but my surgeon decided to come in and do it on his day off instead because he really wanted to see me. My BP was a little low at 94. They don’t believe it was due to the surgery, but rather that I have been too relaxed. Dr. Willcox told me to be more active and that should help. I have been more sedentary than normal because I was afraid I was doing too much. Figures haha. I’m anxious to get back to the gym and taking long walks and doing more though! Getting the stitches out hurt more this time than I remembered from last time, especially the areas with the knots. There was one stitch that got my hair caught in it and that one really hurt to have taken out. I was glad to get them removed though!
I had a few stitches…
Once my stitches were removed I met with Louisa’s assistant who’s completing her residency, Alyssa, to test the equipment and to make sure the electrodes all worked. It was just like last year. I was able to hear all of the beeps which seemed like a good sign. They seemed louder this time around, too. It was pretty exciting. I got to see my new silver processor, too. It looks really cool! I can’t wait for my activation so I can actually take it home and wear it!
Thinking of my activation, there’s a chance that we may be moving the date up a bit. I have it scheduled with Paula on the 24th (Christmas Eve) but Alyssa will be there on the 23rd so we’re trying to move it up to that date. The only thing is that Alyssa doesn’t have her license yet and isn’t normally allowed to do activations on her own. But my mom and I don’t have a problem with it at all. Honestly, I like Alyssa better than Paula and Louisa. I do like both Paula and Louisa, but Alyssa has a great personality, is very professional, and seems to really know what she is doing. Even though she isn’t licensed yet, I trust her and I know she’s helped with activations and knows what to do. They said they’d have to ask the board of directors for permission and would get back to us on what they say about it.
I finished my antibiotic and pain medicine yesterday. I was also finally allowed to wash my hair for the first time in 11 days which felt amazing. It was definitely getting pretty nasty lol. It didn’t really hurt to wash it. My ear feels completely numb still. I tried to avoid really touch it or rubbing around that area/the incision though. I have a lot of dried blood behind my ear too which I’m struggling to get off.
After my shower I took a look and tried to find my incision/where they shaved my hair. They were so neat with it that I really can’t even take a picture of it because you can’t see it lol. It’s kind of underneath my hair and completely invisible. Dr. Willcox is like an artist with how he does his cuts. It’s amazing.
The first post-op shower is the best feeling ever.
Today was the best I’ve felt in nearly 2 weeks. I was still working from home, but much more with it. I didn’t take any pain medicine at all or even a nap. I cleaned the house when I finished working. I’m also back to eating completely solid food (that took awhile, even though I didn’t have a sore throat, it was hard for me to bite down/chew things for awhile because of the pressure it put on my ear).
I will really be back to my self on Monday. On Monday I’ll be back to working in the office and depending on how well I’m feeling, back to the gym as well.
I took a break from working on my book with my surgery, but I’m pleased to announce that it is almost complete. I met my goal of writing over 50,000 words in November during NaNoWriMo and have a total of over 90,000 words. I will of course need to update it with everything since going bilateral, but overall I’ve made great progress with the first draft and I’m excited to see it complete soon.
That’s about all I have for now. I’ll update after the 24th (or 23rd) after my activation! What an amazing Christmas gift and blessing this will be!
Last night I attended Advanced Bionics’ online webinar that was all about the new Q90 processor. This was really important for me since I recently found out that I am eligible for an early upgrade to trade in my current Q70 processor for the new Q90.
The webinar was very informative. The Q90 looks almost identical to the Q70 but it is smaller and thinner. It also comes with a few new features to help you to adjust to different sound environments and to block out distracting background noise better. It comes with the option of using a smaller battery that is about half the size of the smallest battery used by the Q70, but all of the sizes used with the Q70 are still compatible with the Q90 as well. The battery life is the same in the Q90 as it was in the Q70. One of the biggest advantages with the smaller battery size option (other than the obvious comfort) is that it will fit inside the AquaCase better.
The three new programs offered in the Q90 are the AutoSound, SoundRelax and EchoBlock.
The Auto Sound feature adapts automatically to the environment you are in. It helps you to better manage noise for more comfortable listening. Sound Relax makes sudden sounds more comfortable to hear. Advanced Bionics gave the example of a golf club hitting the golf ball or dishes clanking together. These sounds can be a bit annoying for a cochlear implant user, so with the automatic Auto Sound feature, this noise is softened a bit to be more comfortable. It doesn’t affect alarms or safety sounds though, so you won’t have to worry about missing something important with this feature. Lastly, EchoBack is the one program that is not automatic. EchoBack allows users to hear better in noisy environments.
The Q90 makes me really excited about going bilateral in less than 10 days. I liked hearing about how there were some features that would be only available for bilateral cochlear implant recipients like the StereoZoom feature. There will be features that will allow users to stream sounds through both cochlear implants. They will work simultaneously together to support each other. This will help to create an overall better listening experience.
I asked one of the women doing the webinar if I would be receiving the new Q90 when I received my second implant on November 3oth (It’s not widely available yet, I’m just lucky to have been chosen to upgrade my Naida Q70 from my first implant for it ahead of time) and she said yes so I’m very excited about that.
Overall the webinar was very informative. I’m excited about the new Q90 processor. It doesn’t sound like it will be drastically different from the Q70, so it should be easy to adjust to.It sounds like it will help to give me clearer sound and an even better listening experience (if that’s even possible).
I know what you’re thinking…
I thought you said your first cochlear implant support group meeting would be your last.
And you’re right, I did.
Back in May I went to my first cochlear implant support group when they did a discussion on cochlear implants and dementia. It was extremely depressing and I felt the whole atmosphere to be rather negative. I vowed I’d never go again.
Well, things happen. I kind of lied.
It’s been a weird week.
I broke up with my boyfriend. If you read my blog on a regular basis, you’ll know I loved him very much. I still do. I think a part of me always will. I’m not going to go into the details about that here. Let’s just say it happened, it hurts like hell, and I needed to get out of the house.
A friend of mine, Wayne, helps to run the Cochlear Implant Support groups for the Haddonfield area (the ones closest to my home). We are friends on Facebook and Wayne and I talk on a regular basis. He knew that I had just broken up with my boyfriend and was really hurting, so he told me I should come to the next support group. He told me it would do me good to get out of the house and “you never know who you’ll meet” (I mentioned on Facebook how I needed to make friends. My boyfriend was not only my best friend, he was my only friend. Breaking up with him was more than just breaking up with a boyfriend, it was breaking up with my best friend, too). I kind of felt obligated to go after that. Plus, I figured it was a welcome distraction. Sure beats staying at home, feeling sad, and crying myself to sleep anyway.
The topic was actually pretty interesting. It was on hearing preservation after the cochlear implant surgery. You may remember me mentioning previously that I still had the same amount of hearing left in my ear post-surgery. I was interested in hearing what they’d say about that since the topic was definitely pretty relevant to me this time around.
Dr. Pelosi, assistant professor and otolaryngologist at Jefferson University, was the one doing the presentation. I have heard quite a bit about Dr. Pelosi especially when I did my early research for a cochlear implant surgeon. My first impression is what any newly single 20-something year old girl would think, “He’s really hot”.
Hottest doctor, ever?
But of course looks are not everything and I have a really weird thing with people who are highly physical attractive. I assume most highly attractive people are jerks. I’m not outright saying I thought Dr. Pelosi was a jerk. I didn’t think that at all, he seemed like a nice guy. I did however get the impression that he was a little coincited. But he was a nice guy and he was smart.
Dr. Pelosi made a lot of interesting points about hearing preservation post-cochlear implant surgery. There were many things I didn’t know like how the size and shape of the electrodes may play a role in hearing preservation. Also, the speed at which they insert the electrodes can have an impact. Dr. Pelosi said that thinner curved electrodes inserted more slowly may help with post-implantion hearing preservation as opposed to thicker, straighter electrodes that are inserted more rapidly. This is because there is a nerve by the cochlea that the electrodes are inserted near. Ideally, surgeons want to be as gentle as possible when inserting the electrodes so that they don’t hit that nerve. Hitting the nerve is what can cause a loss of residual hearing. With the thin, curved electrodes inserted slowly, there is a smaller chance of tearing or otherwise damaging that nerve.
The only thing I didn’t really like with Dr. Pelosi’s presentation was that he used a lot of really technical terms and big words. I felt like some of that was because Dr. Pelosi is a very young doctor — much younger than most of the people at the support group — and he may have done that to try to prove himself to them. But I would have rather he used less complex language that is easier to understand. I think had my surgeon who is older and more experienced, Dr. Wilcox, done the presentation I would have understood it a bit better.
At the end of the presentation a lot of people asked questions. I liked that the group of people were mostly different from the group that attended the first support group meeting I went to. They were more interested and less negative about cochlear implants. Most of the questions were about the electrodes and the hybrid cochlear implant which Dr. Pelosi also touched on. I realized that I didn’t know how many electrodes I was inserted with, so I asked Dr. Pelosi if that mattered. He told me it didn’t; all that mattered was that it worked and that I knew what kind of device I had which I did. I kind of figured that much.
Some of the people asked beyond stupid questions that I had to try not to laugh at. The whole “there are no stupid questions” can really be a lie sometimes. The stupidest question I heard was from a guy wanting to know why they couldn’t tune his cochlear implant electrodes to match that of a piano or something. Obviously he was a musician who lost his hearing later in life. He swore he knew exactly which sounds he was and wasn’t hearing and how it should sound.
Maybe I am being biased or unfair because I’m not a musician and I don’t know much about musical tones or piano keys, but this doesn’t seem right to me at all. No, you don’t know what you are or aren’t hearing. You’re learning the sounds. You can’t just pick and choose which sounds you do or don’t hear or receive. It doesn’t work like that.The whole cochlear implant thing is a process and you’ll discover new sounds over time.You can’t just wake up one day and be like “I want to hear this piano key today and this one tomorrow”. I feel like that should be common sense, which I felt this guy obviously didn’t have. Based on the look on the faces of others who attended the meeting and even Dr. Pelosi (who remained extremely professional and didn’t outright laugh in the guy’s face), they agreed.
After the meeting I made a point to talk to some people and connect with them. I won’t lie; half the reason I did this was for networking purposes…. I am writing a book about my experience, afterall! I need to build my connections so I can sell my book once I finish writing it and have it published. But I did genuinely enjoy talking to the people. They were all much older than me and most of them had very different stories. A lot of them lost their hearing later in life or had an illness that wiped out their hearing. I’m not sure any of them were born deaf or hard of hearing like I was. I swapped stories with them and also told one woman who was about to be activated good luck and not to be afraid. I reminded her that she might not like the way things sound initially, but if she worked with it, it would get better.
One thing I wish though is that more people my age would come out to these events. My mom told me that maybe I can help work on getting people there or maybe I can even look into starting my own group for people my age. I know that I’m not the only deaf or hard of hearing 20-something year old in NJ. I’m frequently told that deaf/hoh individuals are getting younger. I’ve seen them, too. When I worked at Walmart I saw many kids with cochlear implants. I always thought that was pretty cool. I also talked to a lot of people around town who have told me they have kids with cochlear implants. I think the reason why they don’t come to meetings or support groups is that they feel ashamed by it — they want to hide the fact that they even have an implant. That is sad to me. There is no reason to be ashamed. My cochlear implant is the best thing that ever happened to me. I talk about it all the time and I flaunt it because it makes me proud! I was given an incredible gift from God — the gift of hearing. I want everyone to know it. I just need to get more people my age to see things like that. I’ve always been deaf and loud, but maybe now I need to get a little louder.