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?
Image Credits: Pinterest
This post has nothing to do with drugs or anything you’d expect from Camden, so sorry to burst your bubble if that’s what you were looking for.
This post does still have a very special story about Camden though. I present to you, the newly revised (and most difficult chapter to write) of my novel, “Follow the Yellow Brick Road”.
Chapter 1: Follow the Yellow Brick Road
Loss. It’s one word with a multitude of feelings attached to it including despair, emptiness, and hopelessness. For some people, loss means nothing. You can’t lose something if you’ve never had it to begin with, right?
That’s how hearing loss worked for me. My mother, on the other hand, can remember the exact moment when she discovered my hearing loss.
I was two years old and my mother would call out my name, but I never responded. The doctors 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 banged a handful of pots and pans together behind my back and I didn’t flinch, she knew something was wrong. Defying the doctors, 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 profound hearing loss.
The best way to treat it — or at the time, the only way to treat it — was with hearing aids. I needed them in both ears.
After being diagnosed with profound hearing loss, I made the journey to Camden once every two weeks for speech therapy lessons. My 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,” my 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,” my mom said.
“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. Thanks a lot, Mom. I thought.
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.
“Ready to use the magic mirror?” Miss Vicki asked.
“Yes!” I would exclaim.
“Okay. Let’s practice our “Sh” and “Ch” sounds,” they’d say. “We’ll start with ‘sh’ first.”
“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. I didn’t have the heart to tell her I hated being called “Kimmy”.
“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.
“suit case,” 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. As far as I could see, I was one in the same with the rest of the hearing world. Unfortunately, as I’d learn in my grade school years, not everyone saw things that way.
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).
Today has been quite the day! I took off of work today (although I did check in, answer emails, and comment on tasks as much as possible), but the day has been just as busy if not more so than my usual work days.
At Around 10am, I left for the train station and then took the train into Philly. My first appointment was at Jefferson with Alyssa, an audiology student who was filling in for Louisa. I had met Alyssa once before during my last appointment when I had my 2nd cochlear implant evaluation and really liked her. She is not yet an audiologist as she is still in school, but she said she should be an audiologist in May and she still fills in and helps both Louisa and Paula out.
I was just meeting with Alyssa today to choose a color for my 2nd cochlear implant and to go over the options for the accessories and the package. It was a super quick appointment. I was originally trying to decide between the ruby red and the silver. After seeing it though I was pretty lukewarm to the red; it just looked too dark. I decided to go with the silver. It was pretty easy for me choosing the accessories. I didn’t want the palm pilot thing since I didn’t think it was worth it for me. I hear pretty well on the phone without having to use that tool to stream to both of my cochlears. It made more sense for me to opt for getting more batteries instead so I chose extra batteries with more of the small ones since at the moment I have more large than small. I also choose to get the Aquacase and I ordered it to be in a navy blue called Petrol with a white headpiece and cable.
I choose the Silver/Gray one for my 2nd implant and the Petrol one for the headpiece on my 2nd Aquacase.
I asked Alyssa which processor they will be giving me. The Naida Q90 isn’t available for public distribution yet, but I’m eligible to upgrade my Naida Q70 for it for my first implant, so there’s a chance they’ll be giving it to me for my second one as well. Alyssa will call and find out.
I also set up my activation appointment. I had a little bit of trouble scheduling it since both Louisa and Paula will be out for the holidays for awhile but I ended up scheduling it for…………..
DECEMBER 24TH! Yes, Christmas Eve! What an amazing Christmas gift it will be!
After my appointment with Alyssa I went over to Starbucks since I had about an hour of time left to kill. I was happy they had my seasonal favorite — Peppermint Mocha. I ordered it as a Venti Iced Frappachino. :).
Is there anything better than a Starbucks Peppermint Mocha Frappachino? No, there is not.
My second appointment was at 1:30 for pre-testing. It was another very quick, easy appointment. The doctor just asked me some basic questions like if my allergies were still the same, if I had any other surgeries in the last year aside from my first cochlear implant, if I had any medical conditions, yada yada. Then he took my blood pressure which was fine, looked at my throat and gave me a short physical all of which were fine. The last step was having my blood drawn just so they could get my blood cell count or something basic. He said I was healthy and good to go with my surgery. He just reminded me to stop taking all of my medications which I have already begun.
When I got home one of my friends whom I met through the cochlear implant groups on Facebook and the Haddonfield area support groups sent me an email. Apparently the Hearing Association of America is looking for articles for a recent issue from people with cochlear implants. He gave me their contact information and I sent her an email so we’ll see what happens! It would definitely be awesome to collaborate with them on something!
Everything is starting to happen so fast with all of this; it’s so exciting! I think I have all of my appointments now. They are:
- November 30th: Date of Surgery
- December 2nd: Meet with Louisa and Advanced Bionics to upgrade first Naida Q70 Cochlear Implant to the Naida Q90
- December 10th: Stitches Come Out
- December 24th: Activation Day!
Tomorrow Advanced Bionics is hosting an online webinar on the Naida Q90 processor. I signed up to attend, so it should be interesting learning more about it especially since I know I’ll be upgrading early. I’ll be sure to blog about whatever I find out!
This weekend I realized something for the first time.
I will never again use a hearing aid.
I haven’t worn a hearing aid in more than 2 months since I broke the one for my right, unimplanted ear and every backup I had (the battery compartments snapped on them both awhile back, preventing me from closing them and causing them to whistle incessantly). But this realization still felt weird to me.
I have been wearing heads since I was 2, meaning I’ve had hearing aid audiologists since I was 2. It is weird to think I don’t need them anymore.
I’ve gained (and am in the process of gaining) far more with my cochlear implants that I ever had with my cochlear implants. I have my own audiologists for my cochlear implant. Still, I feel kind of bad about the fact that I won’t be seeing Sherri at Miracle Ear anymore.
If it wasn’t for Sherri, I never would’ve gotten my cochlear implant.
Sherri was the one hearing aid audiologist that was different from the rest. Whereas all of the others just wanted to sell me their hearing aids and didn’t really care about what was best for me, Sherri was the exception. Sherri was the only one that was honest and told me that no hearing aids, no matter how good they were, were ever going to give me the clarity I needed. The only thing that could give me that clarity was a cochlear implant.
Sherri told me that cochlear implants weren’t dangerous or anything to be afraid. She told me they weren’t the brain surgery that I thought they were. Sherri encouraged me to do more research and to seriously consider getting one or more.
If it weren’t for her, I never would’ve seen and learned of all of the benefits with cochlear implants and I certainly wouldn’t have ran out to get not only one, but 2.
My days of being a hearing aid patient of Sherri’s are over now. It’s kind of sad in a way. Breaking up with my hearing aid audiologist, Sherri, feels harder than breaking up with my boyfriend was. She doesn’t know yet that I’m getting my second cochlear implant, but I will have to call her soon to let her know. I know that she will be happy and excited for me, but I’m sure she will be sad to lose me as a patient, too.
But this isn’t goodbye, it’s just “I’ll see you later”.
Sherri may be a hearing aid audiologist, but she still does a lot of work with cochlear implants as well. Who knows, maybe I’ll have the opportunity to see one of her presentations or attend an event with her one day.
If there’s anything I learned from all of this it’s that when God closes one door, he opens another.
He’s closing the door to my hearing aid journey and opening up the door to my cochlear implant journey. And what a journey it’s been so far!
It’s been a crazy, whirlwind of a week.
Whereas everything with my first cochlear implant seemed to happen in the blink of an eye and get approved overnight, things with my 2nd implant haven’t been quite as easy.
You may recall a few weeks ago I blogged about my evaluation for my second implant and how I scored a bit too high under the best aided conditions. We set up a tentative date of surgery of December 14th. This past week, my mom contacted Jefferson to check the status of the insurance, but they informed us that there were no updates; it was still processing. We didn’t expect to have any answers since Dr. Willcox lead us to believe a decision would be made at the last minute, (most likely not until December 11th…the Friday before the scheduled date of surgery).
However, God works in mysterious ways…
A woman in the pre-cert department decided to keep checking in on insurance and trying to put it through. I am unsure if it was a mistake or if it was done intentionally, but on Wednesday, November 11th, she told the insurance company we were scheduled for surgery on Monday, November 16th. We would need an answer by Friday. This put extra pressure on the insurance company to make a decision.
Needless to say, the next few days left me feeling a bit anxious. I couldn’t wait for Friday to come around to have my answer. I prayed faithfully every day, asking God to give me patience and understanding of whatever the verdict may be.
Patience is something I had difficulty with though once Friday came around. I wanted to know immediately!
I kept texting my mom throughout the day on Friday asking if she had any updates, but she never did. She called Jefferson and they said that there was an issue with the paperwork…they ended up not receiving them until that morning for some reason. I am unsure what happened with that as we were lead to believe all of the papers were sent several weeks ago after the evaluation. My usual audiologist wasn’t there though, I had a new one. I’m thinking maybe that’s where the issue arose — perhaps a lack of communication? Or it could’ve been something with the insurance company. It’s not clear who was at fault.
Regardless, the girl working in the pre-cert department told the insurance company that we needed an answer. We were scheduled to go into surgery on Monday…we had to know. So the insurance company said they’d have an answer for us by 5:30pm. This was a whole half hour later than the office at Jefferson was even open, but the woman in pre-cert said she’d stay late. She came in to work late anyway.
I stared at my phone like crazy. After work I had to go to the grocery store with my dad. It was about 5 when we went. I told my dad to make sure the sound was on on his phone in case my mom called him from work with news. But it never rang.
When we got back to the car it was 5:21. Still nothing. I began to get disappointed thinking we wouldn’t hear anything because even if the insurance company came up with an answer, Jefferson would be closed so we wouldn’t know until Monday.
I got home and continued to stare at the phone. 5:30 rolled around. Then 5:45. When the clock read 6 I was ready to give up and assume that either it wasn’t approved, we wouldn’t have an answer until Monday, or both.
Then the phone rang at 6:01. I picked up on the first ring, totally surprising my mom who is still not used to the fact that I can hear on the phone.
And the verdict was….
INSURANCE WAS APPROVED!
My surgery isn’t really going to take place on Monday, but soon. Everyone at Jefferson was gone by the time it was approved (except the poor pre-cert girl who called) so we will have to call on Monday to reschedule surgery (and first move up the pre-op appointment to go over anaesthesia and all of that stuff). I know that Dr. Willcox does surgery on Monday and Thursdays, so we’re looking at the earliest date being Thursday, November 19th. I will know for sure on Monday though. I want to get this done as soon as possible!
My other exciting news is that Advanced Bionics has a new processor out, the Naida Q90. My audiologist has already contacted me asking if I’d like to come in for an upgrade. I can just trade in my current model, the Naida Q70. The Naida Q90 is supposed to be pretty similar but offer better sound quality especially in regards to noisy environments. It’s also supposed to be a bit smaller.I am doing a webinar on Thursday (unless of course I am in surgery that day haha) where I should learn more about it. I’m not entirely sure if I want to go ahead and trade in my current processor for it since I have been doing so well with the one I have already, but regardless it is exciting and I’m looking forward to learning more about it.
I have more exciting news too about something else that is happening in my life, but I can’t talk about it openly yet. I just ask that everyone keeps me in their thoughts and prayers.
Yesterday was quite the day.
I had my evaluation at Jefferson for my second cochlear implant. The day started out pretty well. I was off of work so getting to sleep in a couple extra hours was definitely a perk for one. For two, before I even left for Jefferson, they called me to let me know my insurance was approved.
However, there was a slight catch…
I had to meet the criteria.
I’ll be honest I completely ignored the part about meeting the criteria. After all, Dr. Wilcox did say during my last appointment that it was just a manner of “Crossing our t’s and dotting our i’s”. I knew that I was deaf in my right ear every bit as much as I was in my left ear that I already had implanted. I knew that none of this has changed in the last year. I knew that I didn’t benefit at all from my hearing aid (before I broke it I mean). There’s no reason why I shouldn’t have been a candidate…
However, they left out the part about meeting the criteria being based off of how well you do in the best aided conditions and that for me that would mean how well I do with one cochlear already on…
I had a new audiologist for my appointment since my usual one, Louisa, was on vacation. The audiologist’s name was Paula and she was working with her extern, Alyssa. She was a lot different than Louisa, but seemed nice enough. She said there was no guarantee I’d qualify, but we’d test and see.
I had to do a series of hearing tests that were identical to the ones I did last year for my first cochlear implant evaluation. First they tested me for being able to hear the beep with my cochlear and a hearing aid on (they had a hearing aid for me to borrow). Next they tested me with my cochlear and hearing aid on for sentences without background noise. Then they did it with background noise. The last tests they did were without my cochlear on and for both beeps and sentences.
I did okay on the tests with my cochlear. The cochlear in my left ear certainly helped,but I still didn’t have “perfect” hearing. I noticed that I couldn’t hear from my right ear. Having the cochlear in my left ear helped me with word recognition a bit, but no so much for general sounds especially softer ones and high-frequency.
I got a 73% for the sound and 99% on my word recognition with my cochlear. However, once they took my cochlear off I scored a 0. I am deaf in my right ear. I can’t hear anything at all. Excuse my language, but the direct quote from my audiologist regarding my hearing (or actually lack thereof in my right ear) is that “You can’t hear shit”.
The blue lines show my left ear without my cochlear. The red circles are my right ear. The S’s are where I am with one cochlear implant. What a difference! I can only imagine how great I’ll do with 2 implants if I can get insurance to approve it!
Unfortunately, the FDA says that in order to qualify for this surgery, I have to score a 60% or below in the best aided conditions. Since I score 73% I did too well. That doesn’t mean though that I can’t get the surgery. I had to have Dr. Wilcox and my audiologist, Paula, submit a pre-cert. What this does is explains the test results and why they still believe I would benefit from getting my second cochlear implant and why they recommend it.
They also had me fill out a quality of life survey to submit to the insurance company. This tells the insurance company a little bit of information about how my hearing loss affects my daily life. It asked me about how I perform in social situations, what my dating life was like, how I viewed and felt about myself, etc. I explained how I sometimes skipped social events if I thought it would be too awkward or too loud and I wouldn’t hear well enough. My love life? Yeah my hearing has definitely mad an impact on that. I was in an abusive relationship in the past where my ex would yell at me and make me feel bad for my hearing all the time. My most recent ex was pretty good with my hearing (FYI, that guy I previously wrote about a lot? We just broke up. But that’s another story), but that’s not usually how it works.
Dr. Wilcox went ahead and scheduled my surgery. He said this would force the insurance company to act and make a decision about whether or not they’d cover my surgery. However, we had to schedule it out far in advance (not as soon as last time — last time we scheduled it exactly 1 week after my evaluation!) to give them enough time to make a decision.
So my (tentative) date of surgery is………………………………….
December 14th! If this date remains and insurance is approved I will have my implant just in time for Christmas and will have my stitches out (and be able to wash my hair — thank god lol) the day before Christmas Eve. The receptionists who scheduled it said if insurance approves my surgery before that date we can always move it up though which is what I plan on doing of course.
I also have to go back for pre-testing on December 2nd like I did last time. Exact same procedure.
I didn’t pick out a color for my cochlear or what accessories I want yet, but if it gets approved I will. I’m leaning towards silver. I definitely want a different color from the caribbean blue that I already have. I can never match or be normal of course lol.
I’m feeling a wide range of emotions in regards to my testing. On one side I’m disappointed because I thought for sure I’d be eligible with no questions asked and schedule my surgery right away. But on the other hand I feel blessed to have scored as well as I did on my test. To have 30% hearing is a miracle to me. 73% is something I never imagined I could possibly have. If this is the most I’ll ever have, that alone is a true blessing.
All that I can really do now is just pray and hope for the best. I put it all on God’s hands and trust that he’ll lead me down the right path. It’s as my pastor tells me, the Lord already has the answer and knows what is best for me and he will reveal all of his incredible plans for me over time.
Please continue to keep me in your thoughts and prayers during this time. I do still have a good feeling about it because I know my surgeon is a strong advocate for it. He definitely supports me getting a 2nd cochlear implant and I know that he was making sure to carefully word his pre-cert for the insurance company. Also, my surgeon is a Christian that has called me on a Sunday before my first surgery in the past to pray with me. I know that prayer can make all of the difference in the world right now.