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.
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.
Before I get started on this blog post I just want to acknowledge that this is not going to be a popular post or a topic many people want to hear about. Most people, especially those who do not have cochlear implants, only want to hear about how amazing and life-changing they are. Make no mistakes, getting both of my cochlear implants was the best decision I ever made. I have absolutely no regrets. But at the same time that doesn’t mean this has been a fun and easy process where every single day is all peachy. Sometimes it is really really really hard, frustrating, scary, and overwhelming. Sometimes your cochlear implants can even make you feel quite depressed. That’s exactly what happened to me after my hearing appointment at Jefferson on Thursday.
Thursday’s hearing appointment was my 2nd appointment since going bilateral and my first post-activation appointment. I was going for my 2nd mapping and to have some adjustments made. I told Alyssa, the resident in training audiologist whom I’ve been seeing for a few months now, that I thought I wanted more volume in my new processor, so she had me go through and listen to all of the sounds at varying levels again. She made some adjustments based on my responses. She checked my initial processor for my left ear as well since it’s been I few months since we did it. She actually ended up turning the volume down on that one.
After adjusting the volume Alyssa asked me how I liked my current programs and which new programs I wanted. This was a pretty long process since I am only of the only bilateral patients at Jefferson with the new Q90 processors. Some of their patients have them, but it’s very rare to have 2 of those processors now since they aren’t widely available yet. She had to get the audiologist, Louisa, for help a few times since they haven’t made these programs before. I had her program me with the following programs:
- Everyday w/Auto Ultra Zoom
- Everyday w/Duophone/No Auto Ultra Zoom
- Background Noise
I haven’t had to use the program for the background noise yet since I haven’t been in that loud of an environment yet. I did use the duophone once during a client call on Friday but it didn’t seem all that different to me yet. Maybe because I still need to work more to train my new implant. I will try the Aquacase on Monday when I go to the gym. It will be my first time using 2 Aquacases at the gym so I’m pretty excited to see how it compares to wearing just the 1.
Once we got all of the programs squared away it was time for my least favorite activity: a hearing test. She had me take off my left cochlear implant so we could just focus on my new, right ear.
First Alyssa tested me with just the beeps. I did very well with those. She didn’t write down the percentage and I don’t have my audiogram with me to look at it right now, but I know I scored right around the normal range with that which is great considering I’ve only been activated for a month. It was a good start.
Unfortunately, the test seemed to go downhill from there. After that we moved on to sentences. Alyssa played recordings and I had to repeat them back. I could pick out a couple of the words, but I missed a majority of the sentence. After doing some sentences we moved on to just words where I did even worst.
Being in that extremely small room and not being able to understand what was being said through the speakers gave me such extreme anxiety. It always does, but it’s the worst when you’re unsure of yourself and it heightens when you keep getting the words wrong. The more you miss them, the more anxious you become and then you simply get depressed. Hearing tests can be the absolute worst when you’re deaf or hard of hearing and it’s hard to really describe or have someone relate to that feeling unless they’ve experienced it.
The absolute worst part of the test though was what followed. After going through all of the sentences and words Alyssa instructed me to remove my right cochlear implant (while still keeping the left one off) and she tested me for the beeps again. I got maybe 2 pitches right when they were at EXTREMELY high volumes and that was only because I could feel the vibrations through the headphones. If it weren’t for the vibrations, I would’ve missed those as well.
I have no residual hearing left in my right ear. I knew that was a risk when I got implanted and I was more than willing to take that risk. However, I still expected to retain my residual hearing since I did with my first implant. The hearing I have now is far greater than what my residual hearing was (I only had about 7%, probably a bit less of residual hearing), but it was still hard to hear (no pun intended). Without my cochlear implant in that ear, there’s nothing there.
Alyssa calculated my word recognition to be 34%. She said she was happy with my progress and that I was right where I should be for being activated for only a month. However, all I saw was a 34%, which to me meant failing my test big time (think of it this way — when you’re in school and earn a 34 on your math test you’re probably less than thrilled…). I felt really depressed after that test and spent the rest of the day sulking and feeling sorry for myself.
My cochlear implant is a blessing and having 34% is a HUGE improvement for where I was, make no mistake. My mom and many other people in my life yelled at me for being so miserable and for being so hard on myself. But it’s hard to make someone understand who’s never been through it. Yes, I know I’m right on track and I’m doing well blahblahblah, but it doesn’t always feel that way. It is frustrating to know you’re not hearing the right way. I have the volume in that ear but I don’t understand sounds very well yet. I can’t always make out words or sentences. I’m not on the same level with my left ear yet. I know it takes time, but it is so easy to become impatient.
I also feel a huge sense of pressure and like I have high expectations that need to be met. I myself set the bar high and have high expectations for myself. I know how well I’ve been doing with my left ear and I keep comparing everything to that ear now. When I received my first cochlear implant there was nothing to compare it to so everything felt amazing. It’s hard now that I know what to expect. It’s hard to remember that this is going to take time, especially because I expected things to be so much easier with my 2nd implant (which does not seem to be the case).
There’s also the issue with the people who never received cochlear implants and don’t understand how they work…which is pretty much everyone in my life. Everyone asks me about it constantly and “Can you hear me now” or “Wow, I bet you can hear really great now”, but that’s not always a yes…or at least not yet. Actually without the help of my left ear, a lot of things sound really weird with the right one now. Things still sound robotic. I still can’t understand a lot of spoken words. I might be able to hear you, but I probably don’t understand you as well as I want to. Trying to explain this to people is hard. There’s a lot of people that don’t understand and when you try to explain it they think “Oh, so it’s not working?’ No, that’s not right either. It is working, it just takes time. But it’s hard to explain it to someone who doesn’t understand and it gets depressing because it’s like a reminder that you’re not quite where you want to be with it. And you feel like you’re letting everyone around you down who thought you’d be able to hear and understand everything well right away. And then you feel like you’re letting yourself down, too, because you’re not where you want to be with it, either.
I really wished on Thursday that I had a bilateral (or even just plain deaf/HOH) friend to talk to. I mean I do have some that I met from the support group meetings, but they are all significantly older than me. I wished I had someone my own age, someone with a similar story, to confide in and to lean on for support. Because I think that’s the only kind of person that would have understood why I was upset and exactly what I was going through. I know these people are out there — just haven’t had luck actually meeting any yet lol.
The cochlear implant journey is not easy and it’s not a straight-forward path to success. It’s a rocky mountain climb and sometimes you fall down the mountain and end up in the slumps feeling depressed by the whole thing. But with hard work and practice, you will eventually make it to the top when you are ready.
I spent all of Thursday sulking. Then on Friday night I went back to practicing words with my mom and I got most of them right and I felt a lot better. I’m hoping to squeeze in some time to play with Angel Sound and listen to some sermons with just my one processor on to further help to train it. One thing that I forgot on Thursday that my mom reminded me of was that I didn’t get tested for words on my 2nd mapping with my first cochlear implant — I didn’t do that until 4 months after activated at which point I got a 68%. When you think of it in that light my 34% at the 1 month mark doesn’t sound bad at all. I really shouldn’t have been tested so soon for word recognition. But Alyssa didn’t know better I guess. But it’s only been 1 month and I’m already halfway where I was in 4 months with the first one. I’m not doing as bad as I think.
I’m not about to give up. I’m going to keep working until I end up where I want to be. This is a long process, and it won’t always be easy, but I know it will be more than worth it.
My new silver cochlear implant!
It’s been 3 days now since I’ve had my second cochlear implant activated. Although I knew what to expect this time around,that doesn’t change the fact that it’s been a bit of an overwhelming and nerve-wracking experience nonetheless.
Activation date was on Wednesday, December 23rd…the day before Christmas Eve. I had Alyssa, the girl who is doing her residency (there were other audiologists around if we needed them…she’s not licensed but we specifically requested her since she’s been so excellent…we really like her) activate me. I couldn’t sleep prior to my appointment because I was way too excited. Getting to Philly was a bit of a challenge since it was raining and incredibly foggy. We couldn’t take the train like we usually do. My mom and I had my dad drive us into Philly. Traffic was bad since it was right before the holiday. We ended up being over a half hour late, but fortunately Alyssa didn’t mind. I don’t think they had many appointments being so close to Christmas…
My appointment was supposed to be at 9:30, but we didn’t get there until after 10. It was a fairly quick appointment. I believe she just used the same settings as were on my first cochlear implant. She played a couple beeps first and had a chart for me to choose whether the beeps sounds too soft, soft but comfortable, comfortable, or too loud. This process took about 10 minutes or so. I found that most of them were in the comfortable but soft or just comfortable range.
Listening to the beeps!
Once we finished with the beeps we moved on to basic sounds, expressions, and words. My mom asked me if I could hear her and if she sounded like Mickey Mouse so I laughed and said “Yes”. Her voice was very squeaky, just as it was with my initial cochlear implant, but it began to normalize quickly. Alyssa’s always sounded pretty normal for some reason. I guess her voice isn’t quite as high as my mom’s is or something.
I didn’t do too bad with the basic sounds like “oooo” and “mmmm” and “eeee”. Some of the words I struggled with especially colors like “purple” and “orange”. Those two were the hardest for me. It will take some time to adjust to and for sounds to be normal. My own voice echoed back a lot and sounded weird, but not quite as weird as it did with my first implant. I am unsure if I like the volume or not. Everything sounds so robotic and strange now that it is hard to tell.
My mom sounded like Minnie Mouse at first…how could I not laugh?
I have the new Q90 processor, so that alone may take some getting used to. While it’s similar to the old Q70 I initially started with, it still has some differences that take some getting used to such as automatic programming. However, this one is a bit different than the one on my left ear. I am back to having 4 programs and switching to a new one each week as my mind begins to learn and process the sounds. The Aquacase is not yet programmed. Alyssa said I need to get used to the other sounds first so it’s not too overwhelming.
Alyssa recommended that I wear my new cochlear for my right ear as much as possible so that I can train it. I wasn’t home very much on the first day. After my appointment I went to the Amish market, grocery shopping at multiple stores, to my hairdresser’s for a haircut, out for dinner, and walmart, so I wore both cochlears out most of the day. However, whenever I was home I took the old cochlear off. Everything sounded a little more clear on the first day then my first cochlear did, but still pretty robotic and strange. My mom’s voice was less squeaky, but my dad’s sounded pretty robotic. Most things aren’t clear, they just kind of sound like distorted noise. Music sounds absolutely terrible, as can be expected. However, if it’s a song that I’m really familiar with it’s not too bad. I listened to some old-school Kelly Clarkson and it was tolerable since I was so familiar with the song.
I spent much more time at home on Christmas Eve and Christmas. Now that I’m single, I don’t have to worry about going to a lot of different people’s homes. My family and I always did Christmas together especially since my grandparents passed; we aren’t at all close with any members of our extended family. So I spent most of Christmas Eve and Christmas with just the new cochlear on except for when I went to church. Everything still sounds pretty weird. I can only watch TV wish captions. I can’t understand people talking much unless I read their lips. I can’t distinguish where sounds are coming from or what they are.
I notice a big difference when I wear them together though. My left ear with my old cochlear implant is by far my dominant ear right now and almost completely overpowers my newly implanted right ear when I have both of my cochlears on. Things are definitely much louder and a bit more clear. Music sounded better at church, and I was once again especially mesmerized by the sound of the violin. High-pitch songs that I previously struggled to really hear like Silent Night sound better. I also noticed I mispronounce a ton of words because I never really heard the proper way to say them…
I am a little unsure of the progress I am making in general with my new cochlear implant. I feel like with my first one I noticed a huge difference on the second and third days, but I am not sure I see that with my new cochlear implant. I’m on day 3 and everything still sounds totally weird, robotic, and distorted. Unless I have my initial cochlear implant on, I can’t really understand anyone speaking or any sounds. My mom stood behind me and clapped and I didn’t really hear it; I kind of ignored it because I thought it was just my dad making noise in the kitchen…
I spent at least 2 hours today working to train my ear. My mom sat down with me and did a word list. I got most of the words wrong, even when I read her lips. I am hearing some parts of the words. Like I can pick out that there’s a strong P sound or a un in in the word somewhere, but I can’t usually get the full word yet especially if I’m not lipreading.
I also used the Angel Sound program to train my ear today. I spent most of my time on Pure Tone Discrimination and worked my way up to level 2. I also worked a little bit on Environmental Sounds and am almost but not quite ready for Level 2 of that as well.
I tried switching from Program 1 to Program 2 today wondering if that would make things better, but ended up switching back to program 1 as I felt like I was getting too much power/sounds in program 2. I’m not sure I am quite ready for that.
I’m unsure how well I’m doing. I feel like the progress was easier and quicker with the first cochlear and that scares me. I feel like I’m failing at this, but even if this is all I get with the first one, it’s still an improvement, right?
Maybe it’s all in my head. It’s easy to look at my first cochlear and see it as all a success, but I didn’t get there overnight. It took me months to gain the ability to hear on the phone and music sounded terrible then, too. But then I think back about Larry and I’s date to Smithville last year. We did that on my 4th day of being activated and I did so well. I could hear him in the car, I could hear music playing (although I couldn’t tell what it was), rubber ducks squeaking, and hold a conversation at Applebees. I had a hearing aid in my other ear, but that didn’t give me clarity or do much of anything. If I take my left cochlear off, my right ear can’t do these things yet. Tomorrow will be day 4. I feel like I’m behind where I was last year, but shouldn’t this be easier?
I know that this is a process and will take time, but I’m still really scared. My anxiety is at an all-time high.I am just waiting for my breakthrough and hoping that it comes soon. I’ve struggled to sleep because I want to be awake to train my ear and see if things get better and I can’t help but worry, What if this never gets better? I know I have a tendency to be an impatient person and this takes a great deal of patience. I also know I need to pray to and trust God more. He’s already given me amazing gifts with my first cochlear implant, and he will with my second one, too, if I just learn to be patient.
This training my ear to hear thing with my 2nd cochlear implant may be proving to be a bit more of a challenge than I expected. It may not be all of the happiness I was hoping it would be at the moment, but it will get better in time. One thing I know for sure is this: I refuse to give up. I will continue to work on training my brain to hear the sounds until they are better than I ever could have imagined. God has given me the gift, now it’s my turn to work to use it as he intended me to do.
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.
Yesterday I had another appointment with my audiologist, Louisa at Jefferson University Hospital. This was for the second half of her music research study. It was the exact same test as I took three weeks earlier except this time I was already exposed to the new music settings on my cochlear. I must admit, however, that I NEVER use the music settings. I always just keep my cochlear on program 1 as that has always been comfortable for me, even when listening to music. Plus, switching programs back and forth can be a little annoying.
Despite not actually practicing with the new music program like I was supposed to, I feel that I did much better this time around. The music did seem a lot clearer. I think the pitches were about the same, but that didn’t strike me as being too difficult in the initial test anyway. I noticed a big difference with the melodies. They were still pretty hard, but I could identify some of them and I have a feeling I got a lot more of them right this time around. The instruments were easier to identify as well. I especially found it easy to pick out which one was the guitar and I could tell the difference between the brass instruments and string instruments pretty well.
After I finished the test I had to answer more questions. They were the same as the ones I answered three weeks ago but not as many. It was just to see how things changed since getting the new music program. Things really didn’t change at all for me though.
While I was answering the questions Louisa told me about another cochlear implant research study that Advanced Bionics will be doing at their headquarters in Valencia soon. This one is for implanted individuals who did not lose their residual hearing. You may remember from my previous post from a few months back that when they tested me post-activation, I still had some of my residual hearing. Louisa did a quick test with me again after I finished the research study questions just to make sure nothing’s changed, and sure enough, I still had my residual hearing and it was the same as when they tested me a few months back. Louisa forwarded my information to Advanced Bionics and they may be contacting me soon about the study if they feel I am qualified for it. If I do get in for it they will be flying me to their headquarters in California free of charge. I never been to California before but have always wanted to go, so needless to say I am pretty excited about it all.
Before I left my appointment I also talked to Louisa a little bit about the AquaCase. I told her that I was using it and even recently used it to go swimming, but I was having a little bit of trouble getting used to it. It sounded a little unclear at times and reminded me of how I had to get used to things when I was first activated. She said that was weird and should not be the case. She also asked me if I was using program 5. I completely forgot about program 5! I always just kept it on program 1. She explained that program 5 was designed specifically for the AquaCase. When you wear the AquaCase, the processor sits in the case away from your ear. For this reason, having the mic on in the processor becomes much less important. Instead, it is far more important to have the microphone in the headpiece on. Program 5 turns off the headpiece in the processor and instead amplifies the one in the headpiece.
Later than night when I got home I gave program 5 on the AquaCase a try. I was surprised by how much better I could hear! I wore it to walk to the gym and worked out in the gym with it on and then after I got my shower and my hair was wet, I kept it on. It definitely made for a more enjoyable walk and a more enjoyable work out. It was really no different than my regular cochlear without the AquaCase. Now I can’t wait to go swimming again! I can’t believe I missed this all before! That just further goes to show you how intricate, detailed, and complex the cochlear truly can be. It’s an amazing piece of technology capable of doing so much that sometimes it can take a bit to fully learn how to use it to get the most out of it. But when you do learn things it’s almost always extremely beneficial. Even after 6 months, my cochlear implant still continues to amaze me with all it does for me.
On March 25th I had another hearing test. It wasn’t my first one since being activated, but it was my most thorough one. You may remember from my post in January that I have already seen great results from my first hearing test. However, during that time they did not test me for word recognition because they felt it was too soon for that. During this particular test, word recognition was the main focus.
They did test my regular hearing, too to make sure they didn’t need to change anything for the mapping. My hearing did improve a little bit in the last month actually, but they really didn’t need to change anything with the mapping. I was pretty comfortable with where I was. They kept program 4 as my main setting and then they gave me all new settings. Program 4 became my new program 1. Program 2 was to help eliminate background noise in noisy situations. Program 3 was similar to program 2, but for even louder environments. Program 4 was for music. I have played with all of the settings a bit. Programs 2 and 3 can be helpful when out in a noisy restaurant. I tried 4 a few times but sometimes it makes music sound weird to me. I almost always just stick with program 1.
The word recognition test was extremely nerve wrecking. Anyone with profound hearing loss will tell you they have word recognition tests. For years I have struggled with these tests and have been lucky to get 1 or 2 words right out of 50 or however many they do. And the ones I get right usually aren’t because I can hear them, but rather because I took a lucky guess. I have been heartbroken over these tests. I have cried many times after these tests.They have been very brutal.
I knew it would be different this time around, but it was still very nerve wrecking. I, and everyone around me including my parents, audiologists, and boyfriend, all had pretty high expectations for this test. Which definitely helped to make it more nerve wrecking. However, our expectations were not only met, but they were exceeded.
First they did a few words. I did pretty well with them. The ones I got wrong I wasn’t too far off with. I usually said something that rhymed or sounded similar to the word it was supposed to be. I find that sometimes I struggle with hear the first few sounds or syllables of a word, but I can usually guess the second half. I’m not entirely sure why that is. I’m sure that in time I’ll get better and manage to hear all of the words though. I scored a 68% on this test. It’s not bad at all when you consider how I previously had a 0%. Take a look:
The sentences were much easier for me. It’s always easier for me when I have other words to fall back on. Some of the sentences definitely caught me off guard though because they were random and at times didn’t make any sense at all. My audiologist did warn me about that though. I did great on these actually. I scored a whopping 93%!
I was absolutely THRILLED by both of these results. I can’t say that mom didn’t cry, but I can say it was the first time we cried over hearing test results for a good reason. Seeing results like this was such an incredible improvement. It was not something we ever though we’d see. It was actually a bit overwhelming but in the best way possible. And you know the best part of all? It’s only going up from here!