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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.
Hey guys! Wow, long time no updates! I apologize for being so quiet lately I have just been so intensely busy! Juggling work full time at Penn Medicine with teaching part time at Rowan University and taking two classes a semester towards earning my MA in Writing for the past year has been no joke! I’ve really been enjoying everything I do though. None of this stuff would have been possible if it weren’t for getting my cochlear implants (or at least not teaching) and it has all been so incredibly rewarding.
School has especially been an interesting experience for me. I am never shy from discussing my cochlear implants with anyone that will (or won’t…as is the case with at least some of my sleepy, bored students…hey I do teach at 8am afterall…) listen from students to classmates, professors, and really anyone in between. One of my students even mentioned that she wants to be an art teacher for the Deaf and learn ASL and hear more about my story.
On the student side of things, well I’m continuing to work towards completing God Granted Me Hearing which will serve as my MA in Writing Master’s project. I have been doing significant research for this project especially on Deaf culture and ASL. There’s definitely a lot to learn and I’m really loving this journey I’ve been on.
But enough about school, the real thing I want to talk about with this post is my hearing appointment I had at Jefferson yesterday morning. This appointment was one of the rare times in my life when I scheduled an appointment kind of “just because”. I mean I guess there was kind of a point to it – I haven’t had a hearing appointment in over a year and haven’t really followed up with anyone as much with my right ear post-activation as I did with my left. I guess it’s because I kind of knew what to do and expect and things have been going well for me. Also, I’m just so busy it’s hard to get around to scheduling appointments like that these days, but with my summer hours allowing me to have off on Fridays I thought it would be a good time to schedule a checkup just to make sure everything is working as it’s supposed to.
I’ll be honest – I was pretty nervous about this appointment. For once though I wasn’t nervous because of my hearing abilities or how I’d test, but I was nervous because I’d be getting a new audiologist. I loved my last two audiologists – Dr. Louisa Yong Yan Liang and Alyssa Lerner (who was an extern when I had her, but I really liked her). Louisa left Jefferson to go to Chicago since her husband is a doctor and took a job there. Alyssa was in a similar situation where her boyfriend finished medical school and matched with a hospital in St. Louis so she left to be with him. This left me without an audiologist.
With all of that being said, I was happy to hear that there was another audiologist I could see, Laura Somers. However, I was still nervous at the prospect of meeting someone knew and gaining a new audiologist.
Fortunately, all of my nerves went away the moment I met Laura and her extern, Shelby Weinstein. They immediately made a great impression on me. They were as sweet as could be. One of the first things that Laura said was “Were you in an article…something about talking on the phone?” referring to the article that I did with The Philadelphia Inquirer. This right away made a great first impression on me because it showed me that she did her homework to familiarize herself with my case and my history. She was very personable and friendly which helped me to relax and made me feel comfortable during the appointment. She had an extern, Shelby Weinstein, who was also very nice. She was more quiet but friendly and seemed eager to learn. Laura took her time with everything she did to make sure to show Shelby what she was doing and Shelby seemed really interested and engaged with it all.
The first thing that Laura did was check my settings and the volume on my right ear. The right ear was the main focus of my appointment since I’ve been doing so well with the left (which makes sense since it was the first ear I had implanted and it’s really common for your first ear to be your dominant or preferred ear since you’re more used to it and it’s also kind of a mental thing – getting your first cochlear implant is such a huge, impactful thing (or at least it was for me) that you don’t forget it. It’s still big and impactful with the second one, but not as much since you have something great already to compare it to whereas with the first one you may be comparing it to nothing.
Laura explained to me that her main goal was to balance my ears out more. She played a series of sounds/pitches and gave me a “loudness chart” where I had to indicate if the noise was too soft, soft, medium, loud but comfortable, or too loud. Most of the pitches fell in the medium or too soft range. Laura turned it up a little bit. At first it was too loud and a bit overwhelming so she had to turn it down a little bit to make it more level. It seems pretty good now but I am still adjusting to it. I notice it the most when I put my processors on for the first time in the morning.
Next Laura and Shelby took me into the hearing test booth and they tested my right ear. First they did the beeps and I scored in the normal – above normal range. This will never cease to amaze me. I still remember when I’d be lucky to have any ranges or pitches listed on the chart. When I was first considering my first cochlear implant I told my surgeon, Dr. Willcox, that I would consider it a success if I could have about 30% of my hearing (at the time I had at the most about 7%) and he said my expectations were way too low – he wasn’t wrong! Now I probably have around 80-90% of my hearing.
Here’s where my hearing was on 6/29/2017 on my right ear…quite a difference!
This test was from January 28, 2016 – a little over a month after having my left ear activated. The red circles at the bottom were for my right ear. This is almost a year before I had it implanted.
Next, Laura tested me for word recognition with my right ear. I was a little bit nervous here because the last time I was tested for this in my right ear was on March 25, 2015 I didn’t do very well – earning on a 68%.
I didn’t do too well on my first word recognition test back on March 25, 2015…
However, I ended up doing just fine. I knew I was doing well – you really can just tell with these things if you’re doing well or not. The more I felt I got them right the more confident I became. In the end I performed even better than I imagined by earning a 90% – quite a big difference from the 68% I earned the last time!
I only got about 3 of them wrong and I wasn’t off by that much on the ones I missed!
For the final test Laura tested me with full sentences and she added in a high level of background noise – the highest level possible – to make it harder. She admitted that a lot of people with normal, natural hearing struggle with some of these. Honestly I think what makes this hard sometimes is how WEIRD the sentences are. One time I got a sentence that was something along the lines of “The monkey is using sign language.” This time I got “A camel is not the most comfortable animal on which to ride” and “Could you speak up a little?” which isn’t a weird sentence on its own, but when you say it in the context of a hearing test it becomes a little awkward and confusing – Laura actually asked me to repeat it probably because she wasn’t sure if I was saying back the sentence or asking her to repeat herself lol. #DeafProblems – right?
I scored an 84% with this test. I thought that I got about a 70 on the sentences last time but I don’t see a record of it (I keep everything) so now I’m thinking this might have been the first time they did full sentences with my right ear? Either way it would be an improvement and I’m quite happy with these results!
126/150 or an 84%? I’ll take it! It sure beats my pre-cochlear implant scores of 0!
My appointment concluded with Laura calling me a “Rock star” and telling me I was good to go until next year when I should come in just for a checkup unless of course something is wrong. She told me to keep her posted on my book and everything else. I was definitely impressed by both Laura and Shelby’s care and I look forward to working with Laura more in the future and I hope that Shelby stays at Jefferson so I can work with her more in the future as well because she seems like she’s going to be really good once she finishes her schooling.
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.