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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.
This week I read 1 Corinthians 14 and it made me think a lot about the history of American Sign Language actually. In 1 Corinthians 14, Paul is talking to the church of Corinth about speaking in tongues. He acknowledges the ability to speak in tongues as being a spiritual gift from God, however, he strongly urges the church of Corinth not to practice the speaking of tongues unless everyone can do it. Paul explains this by stating, “He that speaketh in an unknown tongue speaketh not unto men, but unto God: for no man understandeth him; howbeit in the spirit he speaketh mysteries.” Men that possess the spiritual gift of speaking in tongues can use it to speak to God, yes, but they shouldn’t use it to speak with the rest of the congregation because they won’t be able to understand him. When we enter the church it should be to honor and glorify God and to help our brothers and sisters and Christ to do the same and to better come to know God and his words. If we can’t even understand what the members of the body of Christ are saying then how can we really come to know God and learn at church, let alone properly worship him in his home?
Paul went so far as to suggest that speaking in tongues could be the equivalent of just making noise without understanding what that noise actually means in verses 7-11. Here he states:
And even things without life giving sound, whether pipe or harp, except they give a distinction in the sounds, how shall it be known what is piped or harped? For if the trumpet give an uncertain sound, who shall prepare himself to the battle? So likewise ye, except ye utter by the tongue words easy to be understood, how shall it be known what is spoken? For ye shall speak into the air. There are, it may be, so many kinds of voices in the world, and none of them is without signification. Therefore if I know not the meaning of the voice, I shall be unto him that speaketh a barbarian, and he that speaketh shall be a barbarian unto me (1751).
Wow, definitely a lot of things going on in these verses! Let’s look at the first part of this first, verses 7-8:
“And even things without life giving sound, whether pipe or harp, except they give a distinction in the sounds, how shall it be known what is piped or harped? For if the trumpet give an uncertain sound, who shall prepare himself to the battle?”
A deaf person may never hear the sounds of a pipe, harp, or trumpet. You could blow that trumpet as hard as humanly possible and that deaf person may never prepare himself to battle if that’s all he has to go on because he’ll never know. To him, the sound of a trumpet is completely meaningless.
For me prior to getting my cochlear implant, I missed out on many sounds. I’ve discovered many of them since getting my cochlear implants, but every day I am also still learning more and more sounds. It’s not uncommon for me to jump a little in class as a train goes by or someone talks or fidgets or I hear an unknown sound. I’m constantly trying to define the source of the sound and what it means. This is what the congregation must’ve been like back in Paul’s time when they tried to understand what the speaker was saying when he spoke in tongues that they did not understand.
I also relate this to ASL. The Deaf community needs ASL so that they can understand what is being said in the church. To them, the verbal communication means nothing. They have no idea what the pastor is preaching without the use of ASL. They will never hear the gospel or understand the message that day. The pastor might as well be speaking in tongues because they’d never know otherwise. Here, Thomas Gallaudet’s arguments for using sign language in the church makes sense.
But hold that thought…
Thomas Gallaudet and the manualists didn’t just think that the use of sign language in the church would help the deaf to better understand sermons; they took it a step further. Gallaudet along with the other manualists felt that sign language would bring the deaf closer to God. In Tracy Morse’s dissertation, “Saving Grace: Religious Rhetoric in the Deaf Community,” she quotes Douglas Baynton’s Forbidden Signs when she says:
For manualists, this view was interpreted in Protestant terms: sign language was an original language and meant “closer to the Creation,” not inferiority (Baynton “Savages” 98). However, for oralists, sign language was associated with lower evolution or “inferior races” (Baynton Forbidden 9). Oralists made arguments that deaf students needed to learn spoken English and lip reading or they would be viewed as animals or savages (Morse 51).
Now, let’s look back to the scripture and focus on verse 11 which states, “Therefore if I know not the meaning of the voice, I shall be unto him that speaketh a barbarian, and he that speaketh shall be a barbarian unto me.
The word “barbarian” here is what stands out the most to me. Do you know who else really loves the word “barbarian”? Alexander Graham Bell who was NOT a manualist like Thomas Gallaudet, but rather an oralist that believed that the deaf needed to move away from sign language and instead learn to speak verbally and read lips and live in the hearing world.
So, what am I saying here? Do I think that this verse is saying sign language is barbaric? Absolutely not, but at the same time, it could be absolutely so. So it’s a yes and a no for me.
Here is what I think that verse is saying, or what the core message Paul has for the church of Corinth is:
We need to speak in a way that people can understand what we are saying in church so as to not cause confusion or anything that can inhibit man’s understanding of the gospel and man’s ability to honor and glorify the lord.
Back in the time of the church of Corinth, speaking in tongues was a barrier for people in the church because it might have benefited the person speaking it, but it did not benefit the church. Paul is calling for the unity of the church – everyone needs to unite as the body as Christ and work in a way that best serves God and not themselves and that involves speaking a universal language they can all understand.
What does this mean for the deaf in the church? Should they be forced to lip-read and practice the oral method? No. I think the deaf should have a right to hear the sermon in a way that is the most accessible to them. Many churches offer the hearing loop to help hard of hearing and deaf people to hear (depending on the degree of hearing loss of course). If a deaf person needs an interpreter, they should have access to it.
If the majority of church attendees are Deaf and rely on sign language, then perhaps that church should consider doing full sermons primarily in ASL, as that is what will benefit that church and help the attendees to learn and honor and glorify God the best.
We don’t have to worry too much about the speaking of tongues in modern day. 1 Corinthians 13:8 says, “Whether there be tongues they shall cease”. People cannot speak in tongues today (I acknowledge that many claim they do – I have my own feelings on that but I’ll be nice and go the route of “no comment” on that…). I think that whereas the church of Corinth had to worry about the speaking in tongues today our issue is more or less about what language or what style/tone to use in church. I think it all depends on the congregation and choosing what is the most accessible to your church goers.
Going back to the discussion on the deaf community…
In Baynton’s Forbidden Signs he explains how many oralists feared that by relying too heavily on sign language the deaf community would isolate themselves from the rest of the world. He stated:
Like their contemporaries in other fields of reform, oralists worried that the lives of people were diminished by being a part of such communities as the deaf community; they would not, it was feared, fully share in the life of the nation. The deaf community, like ethnic communities, narrowed the minds and outlooks of its members. “The individual must be one with race,” one wrote in words reminiscent of many other Progressive reformers “or he is virtually annihilated”; the chief curse of deafness was “apartness from the life of the world,” and it was just this that oralism was designed to remedy. Apartness was the darkness manualists redefined for a new world (Baynton 32).
Sign language was (and still is) very different from spoken English or any spoken language, really It’s different from what the majority is speaking and when people can’t speak our language, either they or we miss out. Isn’t this the same as what was going on in the church of Corinth in a way? Paul wanted to see the church of Corinth come together to honor, serve, and glorify the Lord and to unite as the body of Christ. Speaking in tongues was something very few church members could do that caused a separation or divide between those who could speak and understand it, and those who could not. It became a distraction that kept people from coming to know God.
Is sign language a distraction that keeps the deaf from doing things in their daily lives? It is obvious that it causes a divide from the hearing and the deaf worlds. In the church, it can make things better for the deaf and I can see how it can strengthen their personal relationships with God, but if we only signed and didn’t speak spoken English, the rest of the congregation would suffer. I don’t see sign language as being a form of language that brings a person closer to God in the sense of it’s a superior or holier language than standard English. I think it’s just another language that for some is their primary and therefore the best and for others is just another language in the world that exists but one they don’t partake in or use in their daily lives.
Hey guys! I’m back! I apologize for the lack of updates lately. I have been meaning to make this post for a couple of weeks but I’ve been crazy busy with writing my book, God Granted Me Hearing (which yes, is based on this blog and my cochlear implant experience!) :). Also, I haven’t had a whole lot of news lately. My 2nd cochlear implant has been progressing well. I saw Alyssa at Jefferson around a month ago and everything was good but she didn’t test me again so there’s no update on that end.
I do have something else to share with you all today though — what it’s like to get caught in the rain with a cochlear implant. I’ve written in the past about how getting caught in the rain was one of the things I was most looking forward to doing after getting my cochlear implant and I also wrote about what it was like to go swimming with a cochlear implant, but up until a few weeks ago, I never actually seriously got caught in the rain with a cochlear implant.
First let me say this was completely UNPLANNED. I live in Washington Township and I love to take walks. I knew that a thunder storm was on the horizon, but when I first headed out for the day the skies were still clear. It was one of the first days of spring so for once the weather was warm. I didn’t want to walk to the gym like I normally do because I thought it might be too far of a walk and I wasn’t sure if I’d make it back in time to avoid the storm. Instead I decided to take advantage of the fact that all of the basketball courts at the high school I live across were empty. I’ve always loved to play basketball but I don’t get the opportunity to play nearly as much as I’d like. So I grabbed my bag with a couple of bottles of water, my jump rope (don’t ask…), my basketball, and headed out.
I wore my aqua cases for this trip. I didn’t wear the aqua cases just because of the pending storm, but to protect against sweat as well. I made the mistake when I got my first cochlear implant of going to the gym without the aqua case and almost broke it from all of the sweat and moisture I got in it. Ever since that incident I’ve made a point to wear my aqua cases every time I go to the gym, work out, or even go for a walk or do anything that could produce a sweat. I’d rather be safe than sorry.
It took me awhile to cross the street that afternoon. Traffic was busy in Washington Township, as always. When I finally managed to cross the street and make it to the highs school I took out my jump rope and began using it. I’ve had my jump rope for over a year and never used it before. I heard it was good exercise which is precisely why I bought it, but I always shied away from using it fearing I’d look like an idiot, which I totally did, but it was okay because no one was around to laugh at me. I still didn’t have quite enough magnets in my headpiece on the cochlear for my right ear. I think the placement for that one is different than on my left which makes it not stick as well. When I used my jumprope it kept knocking my headpiece off until finally I gave up on it and took it off and put it in my bag.
I only jumped rope for about 5 minutes or so before switching to basketball. I know it doesn’t sound like a lot, but when you haven’t done it for 20 years, jumping rope is really intense! Plus I noticed the clouds were beginning to look a bit heavy so I wanted to stop and make sure I got plenty of basketball time in before it rained on my parade. I put my cochlear back on for this. It works out better for me than the jump roping did, but it still kept coming off my head whenever I jumped so I ended up taking it off again and putting it in my bag.
I played basketball for about a half hour or so before the rain began. I think this was my first time playing basketball with my cochlear implants. I noticed I was much more relaxed. I didn’t have to worry as much about whether or not any cars were coming by the parking lot or if there were joggers running through or someone trying to talk to me. I was able to hear everything around me (and also there wasn’t many people around anyway). It was very peaceful and fun.
After about a half hour I felt a raindrop hit my head. “Okay, that’s my signal to pack it up”, I said to myself. Within seconds of saying that, I found myself in a torrential downpour. The rain came down at the speed of light. I ran to my bag to check my cochlear and put it back on my head and to check that my phone, which was in my bag, was still working. Everything seemed good. Then I grabbed my bag, my ball, and headed on home.
But I couldn’t simply go home; I had to walk back which meant walking through the torrential downpour and trying to cross the dreaded intersection again. It also meant having to pass a bank and drug store while sporting soaking wet clothes and hair and dribbling a basketball. That’s not something you see everyday…
IT. WAS. FUN. SOOOOO MUCH FUN.
This is something I could never do before with my hearing aids. My hearing aids would have broken in seconds and I would’ve been having a major panic/anxiety account over getting caught in a torrential downpour with them. And my mother would want to kill me for destroying my $3,000+ uninsured devices.
But with my aqua cases on, my cochlear implants were 100% waterproof. I had nothing at all to worry about.
I dribbled my ball through the rain until it began to fill with the water and become too heavy to bounce. Then I carried it. I watched the people flee the bank to their cars as if they were afraid the rain might make them melt. As I waited at the crosswalk by the drug store I noticed the people in their cars looked at me like I was some kind of a freak because I was standing at a crosswalk for a busy intersection with soaking wet hair and clothes, a basketball, and the biggest smile on my face.
I didn’t care about being wet. I didn’t care that my clothes felt like they weighed 1,000 pounds from the rain. I didn’t care about my basketball session being cut short. I didn’t care about the fact that I was getting pretty cold. I didn’t even care about the fact that my contacts were getting blurry from being drenched in rain.
I was ecstatic. I was having one of the best days of my life.
When I got home I didn’t have to worry about anything being broken. I did take my cochlears off and put the aqua case parts and those specific batteries in the dryer just to be on the safe side, but I didn’t really have to. There was no panic attack. I didn’t have to take out the hair dryer to try to air them out and to get them to work or nothing at all.
I simply did what any normal person would do…I changed out of my wet clothes, got a hot bath and made a hot cup of coffee to warm up, and went on with my life.
You don’t realize how much these little things in life like getting caught in the rain can really mean to a person until they get to not just experience them, but ENJOY them without any kind of fear at all, for the first time ever. It’s surreal.
Getting caught in the rain with my cochlear implants may not have been everything I hoped it would be. Larry and I have been broken up for over 6 months now. There’s no one new in my life to give me that Notebook-style kiss in the rain. I didn’t even have anyone there to have a conversation with or to go puddle jumping with.
But you know what? It wasn’t what I wanted it to be because it was BETTER.
It was all my joy for the taking. It was all on me. It was all about me, having my moment. I didn’t need anyone else to be there for me. I just needed that rain and to be off in my own little world.
It was one of the best days of 2016 thus far.
I can’t wait to get caught in the rain again sometime soon.
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.
Hey guys I apologize for the lack of updates. Been a bit crazy over here lately since my surgery, but I’m finally starting to get back into the swing of things today.
I had the surgery for my second cochlear implant for my right ear on November 30th. The procedure was almost identical to how it was with my first one with just a few minor differences. I had to be there a bit earlier for one. I had to be there at 6 in the morning which meant leaving my house by 5. I was pretty tired since I stayed up late that night watching what turned out to be an incredibly disappointing Patriots’ game. After the game I couldn’t fall asleep because I was way too excited.
My mom and I barely slept at all the night before… we were both too excited!
I got to the hospital at 6am on the dot and everything moved very quickly at that point. I had some paperwork to fill out/sign and was taking back to the Emergency room fairly quickly where I changed into my gown and had to answer a series of questions. All of the questions were identical to the ones they asked last year and the answers were the same. I had to give them a urine sample and then they fitted me with my IV. I can never just simply get an IV though. You may remember from my first surgery they had trouble finding my veins and I had to have multiple people try to stick me. They got it in on the first try this time, but might’ve gotten a little too close to the vein. I bled all over the place. For the next two days after the procedure I was trying to clean up dried blood from my IV. I swear I think I bled more from the stupid IV than I did from my actual procedure…
I was really, really excited!
Dr. Willcox’s surgical team and all of the nurses and everyone involved introduced themselves to me and explained what they would be doing. They didn’t need to go into as great of detail as they did last year though since I already knew what they were going to do and I saw many familiar faces. Some of them remembered me, too and were very excited to see me which made everything all the more exciting. I really liked Dr. Willcox’s assistant/the guy who was doing his residency with him. He had a great smile and was pretty attractive. My parents laughed at me when I told them this and said that I “must’ve been pretty high from the drugs they gave me” since he was apparently a lot older than me and “Not that good looking” haha.
I feel like I fell asleep much quicker this time around than I did last time. I don’t have much of a memory of everything before the surgery because I just feel like they put me on the table and I went to sleep. Which makes a lot of sense since I really didn’t get any sleep the night before so I quite tired. I feel like there was less machines hooked up to me, but that could just be because I was asleep and didn’t notice them. I had my cochlear on until I fell asleep at which point Dr. Willcox removed it until after the procedure which made things much better for me. Since I could hear I was able to relax a lot more and they didn’t have to keep telling me to lay down because I wasn’t all anxious to see what they were doing like I was with the first surgery lol.
They took me in for the procedure at 7am and I was back in the recovery room around 11am. I think I woke up around 11:30-12. I was very sleepy and struggled to stay awake. They kept telling me they were waiting to take me back to another room. I asked for my parents and they said they’d bring them up but that they knew I was done and that everything went well.
I felt much better after my surgery aside from being tired compared to how I felt after the first procedure. I didn’t have a sore throat, probably because they used a smaller breathing tube after hearing how I had a sore throat the first time around from the larger breathing tube. I also only felt slightly nauseous and dizzy. I did feel a bit of pain though. At first they only gave me a little bit of pain medicine. They gave me more after making me eat the worst-tasting saltine crackers in the world (seriously why do the crackers at the hospital always taste so bad? That thing was straight up cardboard…staler than stale…yuck!)
After successfully eat the sucky crackers, walking a bit on my own, and having the IV removed (which meant more blood all over the place), I was permitted to change back into my clothes and go home. I’d say I was home around 4 or 5pm. The whole procedure and everything didn’t take long at all.
A Post-Op selfie!
Overall I felt much better and had an easier recovery the second time around. I think the fact that I had 1 cochlear and could hear made things much easier, too. I could watch movies which was a great way to relax.
I did have a set back on the 2nd day post-op though. I had to go back to Jefferson to upgrade my processor from the Naida Q70 to the Naida Q90. It was the last thing I felt like doing and my family and I didn’t think it was a good idea at all to go all the way to Philly 2 days affter surgery, but Advanced Bionics was going to be there since it was an early upgrade limited to very few people (I was one of the lucky chosen ones) and it was the only day I could go and do this, so I didn’t have much of a choice in the manner.
I did okay at first. I was dizzy, so I held my mom’s hand a lot. We took the car rather than the bus because we thought it would be easier/more comfortable for us. I did get pretty tired and didn’t want to be there, but I tried to make the most of it. The Q90 looks and works almost identically to the Q70. It is a little smaller and feels lighter though which I like. One of the biggest differences with it is that the programs are almost all automatic (the exceptions being sound relax and the aqua mic) which I like the idea of. Changing programs can be really annoying. I haven’t been in an environment too much yet where I can really see how it works, but my mom did vacuum and I noticed it blocked out the noise a bit (although I could still here it) and I could carry on a conversation and still listen to music and hear everything with it on which was cool. When the programs switch I can hear it switch over, too. I am excited to go to a crowded, noisy restaurant or something so I can really see how it works. Also, once the other ear is activated I’ll be able to unlock many more features that will allow both ears to work together which will be awesome.
Louisa, the woman from Advanced Bionics (I forget what she said her name was) and Dr. Willcox (we saw him in the hallway) all said I looked great considering I was just 2 days out of surgery. By the end of the appointment I started to get weathered and worn out and very sleepy though. It was an important appointment, but very stupid to go out and do that much so soon after surgery…
I felt okay afterwards, but very tired so I took a nap shortly after getting home. It wasn’t until after dinner when I started to get into trouble. After dinner when I stood up to throw my trash away I suddenly got very lightheaded and everything started to go completely black. I immediately sat back down and had my parents give me a drink of Coke. I took my blood pressure and it was only about 55 for a top number! To give you an idea of how scary this was — it was about the same range as my grandmother’s blood pressure right before she died. My parents were scared of course but we were nervous about calling an ambulance and going to the nearest ER since that for me is Kennedy in South Jersey. Most South Jersey hospitals are awful, and that one is definitely one of the worst. We were afraid to go there and have them mess up Dr. Willcox’s work, so we decided to wait it out and just keep monitoring my BP. I drank more soda and high-sodium energy drinks and put my head down for a bit. We did get my BP back in the 100-range which put me out of the woods, thank the Lord!
After that episode I took it easy for awhile barely doing much of anything besides sleeping, watching movies, coloring, and reading. I wanted to go back to work, working from home, that Thursday but decided it was best to just rest up so I took off for the rest of the week.
By last Saturday I was beginning to get a bit depressed. I felt useless. I wanted to go outside and do things and interact with people, but I knew I had to recover, especially after the whole BP issue. My depression was much better than it was after my first implant though, probably because I could at least hear this time around since I had one cochlear already.
I went back to working from home on Monday. It was a busy day back but it felt so good to be back in the swing of things. I did pretty well being back to work. I just got tired after lunch from my pain medicine and antibiotics, but I took a nap after work and I was fine.
I had my stitches removed on Wednesday. I was supposed to get them out on Thursday with Dr. Pelosi, but my surgeon decided to come in and do it on his day off instead because he really wanted to see me. My BP was a little low at 94. They don’t believe it was due to the surgery, but rather that I have been too relaxed. Dr. Willcox told me to be more active and that should help. I have been more sedentary than normal because I was afraid I was doing too much. Figures haha. I’m anxious to get back to the gym and taking long walks and doing more though! Getting the stitches out hurt more this time than I remembered from last time, especially the areas with the knots. There was one stitch that got my hair caught in it and that one really hurt to have taken out. I was glad to get them removed though!
I had a few stitches…
Once my stitches were removed I met with Louisa’s assistant who’s completing her residency, Alyssa, to test the equipment and to make sure the electrodes all worked. It was just like last year. I was able to hear all of the beeps which seemed like a good sign. They seemed louder this time around, too. It was pretty exciting. I got to see my new silver processor, too. It looks really cool! I can’t wait for my activation so I can actually take it home and wear it!
Thinking of my activation, there’s a chance that we may be moving the date up a bit. I have it scheduled with Paula on the 24th (Christmas Eve) but Alyssa will be there on the 23rd so we’re trying to move it up to that date. The only thing is that Alyssa doesn’t have her license yet and isn’t normally allowed to do activations on her own. But my mom and I don’t have a problem with it at all. Honestly, I like Alyssa better than Paula and Louisa. I do like both Paula and Louisa, but Alyssa has a great personality, is very professional, and seems to really know what she is doing. Even though she isn’t licensed yet, I trust her and I know she’s helped with activations and knows what to do. They said they’d have to ask the board of directors for permission and would get back to us on what they say about it.
I finished my antibiotic and pain medicine yesterday. I was also finally allowed to wash my hair for the first time in 11 days which felt amazing. It was definitely getting pretty nasty lol. It didn’t really hurt to wash it. My ear feels completely numb still. I tried to avoid really touch it or rubbing around that area/the incision though. I have a lot of dried blood behind my ear too which I’m struggling to get off.
After my shower I took a look and tried to find my incision/where they shaved my hair. They were so neat with it that I really can’t even take a picture of it because you can’t see it lol. It’s kind of underneath my hair and completely invisible. Dr. Willcox is like an artist with how he does his cuts. It’s amazing.
The first post-op shower is the best feeling ever.
Today was the best I’ve felt in nearly 2 weeks. I was still working from home, but much more with it. I didn’t take any pain medicine at all or even a nap. I cleaned the house when I finished working. I’m also back to eating completely solid food (that took awhile, even though I didn’t have a sore throat, it was hard for me to bite down/chew things for awhile because of the pressure it put on my ear).
I will really be back to my self on Monday. On Monday I’ll be back to working in the office and depending on how well I’m feeling, back to the gym as well.
I took a break from working on my book with my surgery, but I’m pleased to announce that it is almost complete. I met my goal of writing over 50,000 words in November during NaNoWriMo and have a total of over 90,000 words. I will of course need to update it with everything since going bilateral, but overall I’ve made great progress with the first draft and I’m excited to see it complete soon.
That’s about all I have for now. I’ll update after the 24th (or 23rd) after my activation! What an amazing Christmas gift and blessing this will be!
Last night I attended Advanced Bionics’ online webinar that was all about the new Q90 processor. This was really important for me since I recently found out that I am eligible for an early upgrade to trade in my current Q70 processor for the new Q90.
The webinar was very informative. The Q90 looks almost identical to the Q70 but it is smaller and thinner. It also comes with a few new features to help you to adjust to different sound environments and to block out distracting background noise better. It comes with the option of using a smaller battery that is about half the size of the smallest battery used by the Q70, but all of the sizes used with the Q70 are still compatible with the Q90 as well. The battery life is the same in the Q90 as it was in the Q70. One of the biggest advantages with the smaller battery size option (other than the obvious comfort) is that it will fit inside the AquaCase better.
The three new programs offered in the Q90 are the AutoSound, SoundRelax and EchoBlock.
The Auto Sound feature adapts automatically to the environment you are in. It helps you to better manage noise for more comfortable listening. Sound Relax makes sudden sounds more comfortable to hear. Advanced Bionics gave the example of a golf club hitting the golf ball or dishes clanking together. These sounds can be a bit annoying for a cochlear implant user, so with the automatic Auto Sound feature, this noise is softened a bit to be more comfortable. It doesn’t affect alarms or safety sounds though, so you won’t have to worry about missing something important with this feature. Lastly, EchoBack is the one program that is not automatic. EchoBack allows users to hear better in noisy environments.
The Q90 makes me really excited about going bilateral in less than 10 days. I liked hearing about how there were some features that would be only available for bilateral cochlear implant recipients like the StereoZoom feature. There will be features that will allow users to stream sounds through both cochlear implants. They will work simultaneously together to support each other. This will help to create an overall better listening experience.
I asked one of the women doing the webinar if I would be receiving the new Q90 when I received my second implant on November 3oth (It’s not widely available yet, I’m just lucky to have been chosen to upgrade my Naida Q70 from my first implant for it ahead of time) and she said yes so I’m very excited about that.
Overall the webinar was very informative. I’m excited about the new Q90 processor. It doesn’t sound like it will be drastically different from the Q70, so it should be easy to adjust to.It sounds like it will help to give me clearer sound and an even better listening experience (if that’s even possible).