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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.
This week I read 1 Corinthians 14 and it made me think a lot about the history of American Sign Language actually. In 1 Corinthians 14, Paul is talking to the church of Corinth about speaking in tongues. He acknowledges the ability to speak in tongues as being a spiritual gift from God, however, he strongly urges the church of Corinth not to practice the speaking of tongues unless everyone can do it. Paul explains this by stating, “He that speaketh in an unknown tongue speaketh not unto men, but unto God: for no man understandeth him; howbeit in the spirit he speaketh mysteries.” Men that possess the spiritual gift of speaking in tongues can use it to speak to God, yes, but they shouldn’t use it to speak with the rest of the congregation because they won’t be able to understand him. When we enter the church it should be to honor and glorify God and to help our brothers and sisters and Christ to do the same and to better come to know God and his words. If we can’t even understand what the members of the body of Christ are saying then how can we really come to know God and learn at church, let alone properly worship him in his home?
Paul went so far as to suggest that speaking in tongues could be the equivalent of just making noise without understanding what that noise actually means in verses 7-11. Here he states:
And even things without life giving sound, whether pipe or harp, except they give a distinction in the sounds, how shall it be known what is piped or harped? For if the trumpet give an uncertain sound, who shall prepare himself to the battle? So likewise ye, except ye utter by the tongue words easy to be understood, how shall it be known what is spoken? For ye shall speak into the air. There are, it may be, so many kinds of voices in the world, and none of them is without signification. Therefore if I know not the meaning of the voice, I shall be unto him that speaketh a barbarian, and he that speaketh shall be a barbarian unto me (1751).
Wow, definitely a lot of things going on in these verses! Let’s look at the first part of this first, verses 7-8:
“And even things without life giving sound, whether pipe or harp, except they give a distinction in the sounds, how shall it be known what is piped or harped? For if the trumpet give an uncertain sound, who shall prepare himself to the battle?”
A deaf person may never hear the sounds of a pipe, harp, or trumpet. You could blow that trumpet as hard as humanly possible and that deaf person may never prepare himself to battle if that’s all he has to go on because he’ll never know. To him, the sound of a trumpet is completely meaningless.
For me prior to getting my cochlear implant, I missed out on many sounds. I’ve discovered many of them since getting my cochlear implants, but every day I am also still learning more and more sounds. It’s not uncommon for me to jump a little in class as a train goes by or someone talks or fidgets or I hear an unknown sound. I’m constantly trying to define the source of the sound and what it means. This is what the congregation must’ve been like back in Paul’s time when they tried to understand what the speaker was saying when he spoke in tongues that they did not understand.
I also relate this to ASL. The Deaf community needs ASL so that they can understand what is being said in the church. To them, the verbal communication means nothing. They have no idea what the pastor is preaching without the use of ASL. They will never hear the gospel or understand the message that day. The pastor might as well be speaking in tongues because they’d never know otherwise. Here, Thomas Gallaudet’s arguments for using sign language in the church makes sense.
But hold that thought…
Thomas Gallaudet and the manualists didn’t just think that the use of sign language in the church would help the deaf to better understand sermons; they took it a step further. Gallaudet along with the other manualists felt that sign language would bring the deaf closer to God. In Tracy Morse’s dissertation, “Saving Grace: Religious Rhetoric in the Deaf Community,” she quotes Douglas Baynton’s Forbidden Signs when she says:
For manualists, this view was interpreted in Protestant terms: sign language was an original language and meant “closer to the Creation,” not inferiority (Baynton “Savages” 98). However, for oralists, sign language was associated with lower evolution or “inferior races” (Baynton Forbidden 9). Oralists made arguments that deaf students needed to learn spoken English and lip reading or they would be viewed as animals or savages (Morse 51).
Now, let’s look back to the scripture and focus on verse 11 which states, “Therefore if I know not the meaning of the voice, I shall be unto him that speaketh a barbarian, and he that speaketh shall be a barbarian unto me.
The word “barbarian” here is what stands out the most to me. Do you know who else really loves the word “barbarian”? Alexander Graham Bell who was NOT a manualist like Thomas Gallaudet, but rather an oralist that believed that the deaf needed to move away from sign language and instead learn to speak verbally and read lips and live in the hearing world.
So, what am I saying here? Do I think that this verse is saying sign language is barbaric? Absolutely not, but at the same time, it could be absolutely so. So it’s a yes and a no for me.
Here is what I think that verse is saying, or what the core message Paul has for the church of Corinth is:
We need to speak in a way that people can understand what we are saying in church so as to not cause confusion or anything that can inhibit man’s understanding of the gospel and man’s ability to honor and glorify the lord.
Back in the time of the church of Corinth, speaking in tongues was a barrier for people in the church because it might have benefited the person speaking it, but it did not benefit the church. Paul is calling for the unity of the church – everyone needs to unite as the body as Christ and work in a way that best serves God and not themselves and that involves speaking a universal language they can all understand.
What does this mean for the deaf in the church? Should they be forced to lip-read and practice the oral method? No. I think the deaf should have a right to hear the sermon in a way that is the most accessible to them. Many churches offer the hearing loop to help hard of hearing and deaf people to hear (depending on the degree of hearing loss of course). If a deaf person needs an interpreter, they should have access to it.
If the majority of church attendees are Deaf and rely on sign language, then perhaps that church should consider doing full sermons primarily in ASL, as that is what will benefit that church and help the attendees to learn and honor and glorify God the best.
We don’t have to worry too much about the speaking of tongues in modern day. 1 Corinthians 13:8 says, “Whether there be tongues they shall cease”. People cannot speak in tongues today (I acknowledge that many claim they do – I have my own feelings on that but I’ll be nice and go the route of “no comment” on that…). I think that whereas the church of Corinth had to worry about the speaking in tongues today our issue is more or less about what language or what style/tone to use in church. I think it all depends on the congregation and choosing what is the most accessible to your church goers.
Going back to the discussion on the deaf community…
In Baynton’s Forbidden Signs he explains how many oralists feared that by relying too heavily on sign language the deaf community would isolate themselves from the rest of the world. He stated:
Like their contemporaries in other fields of reform, oralists worried that the lives of people were diminished by being a part of such communities as the deaf community; they would not, it was feared, fully share in the life of the nation. The deaf community, like ethnic communities, narrowed the minds and outlooks of its members. “The individual must be one with race,” one wrote in words reminiscent of many other Progressive reformers “or he is virtually annihilated”; the chief curse of deafness was “apartness from the life of the world,” and it was just this that oralism was designed to remedy. Apartness was the darkness manualists redefined for a new world (Baynton 32).
Sign language was (and still is) very different from spoken English or any spoken language, really It’s different from what the majority is speaking and when people can’t speak our language, either they or we miss out. Isn’t this the same as what was going on in the church of Corinth in a way? Paul wanted to see the church of Corinth come together to honor, serve, and glorify the Lord and to unite as the body of Christ. Speaking in tongues was something very few church members could do that caused a separation or divide between those who could speak and understand it, and those who could not. It became a distraction that kept people from coming to know God.
Is sign language a distraction that keeps the deaf from doing things in their daily lives? It is obvious that it causes a divide from the hearing and the deaf worlds. In the church, it can make things better for the deaf and I can see how it can strengthen their personal relationships with God, but if we only signed and didn’t speak spoken English, the rest of the congregation would suffer. I don’t see sign language as being a form of language that brings a person closer to God in the sense of it’s a superior or holier language than standard English. I think it’s just another language that for some is their primary and therefore the best and for others is just another language in the world that exists but one they don’t partake in or use in their daily lives.
Hey guys I apologize for the lack of updates. Been a bit crazy over here lately since my surgery, but I’m finally starting to get back into the swing of things today.
I had the surgery for my second cochlear implant for my right ear on November 30th. The procedure was almost identical to how it was with my first one with just a few minor differences. I had to be there a bit earlier for one. I had to be there at 6 in the morning which meant leaving my house by 5. I was pretty tired since I stayed up late that night watching what turned out to be an incredibly disappointing Patriots’ game. After the game I couldn’t fall asleep because I was way too excited.
My mom and I barely slept at all the night before… we were both too excited!
I got to the hospital at 6am on the dot and everything moved very quickly at that point. I had some paperwork to fill out/sign and was taking back to the Emergency room fairly quickly where I changed into my gown and had to answer a series of questions. All of the questions were identical to the ones they asked last year and the answers were the same. I had to give them a urine sample and then they fitted me with my IV. I can never just simply get an IV though. You may remember from my first surgery they had trouble finding my veins and I had to have multiple people try to stick me. They got it in on the first try this time, but might’ve gotten a little too close to the vein. I bled all over the place. For the next two days after the procedure I was trying to clean up dried blood from my IV. I swear I think I bled more from the stupid IV than I did from my actual procedure…
I was really, really excited!
Dr. Willcox’s surgical team and all of the nurses and everyone involved introduced themselves to me and explained what they would be doing. They didn’t need to go into as great of detail as they did last year though since I already knew what they were going to do and I saw many familiar faces. Some of them remembered me, too and were very excited to see me which made everything all the more exciting. I really liked Dr. Willcox’s assistant/the guy who was doing his residency with him. He had a great smile and was pretty attractive. My parents laughed at me when I told them this and said that I “must’ve been pretty high from the drugs they gave me” since he was apparently a lot older than me and “Not that good looking” haha.
I feel like I fell asleep much quicker this time around than I did last time. I don’t have much of a memory of everything before the surgery because I just feel like they put me on the table and I went to sleep. Which makes a lot of sense since I really didn’t get any sleep the night before so I quite tired. I feel like there was less machines hooked up to me, but that could just be because I was asleep and didn’t notice them. I had my cochlear on until I fell asleep at which point Dr. Willcox removed it until after the procedure which made things much better for me. Since I could hear I was able to relax a lot more and they didn’t have to keep telling me to lay down because I wasn’t all anxious to see what they were doing like I was with the first surgery lol.
They took me in for the procedure at 7am and I was back in the recovery room around 11am. I think I woke up around 11:30-12. I was very sleepy and struggled to stay awake. They kept telling me they were waiting to take me back to another room. I asked for my parents and they said they’d bring them up but that they knew I was done and that everything went well.
I felt much better after my surgery aside from being tired compared to how I felt after the first procedure. I didn’t have a sore throat, probably because they used a smaller breathing tube after hearing how I had a sore throat the first time around from the larger breathing tube. I also only felt slightly nauseous and dizzy. I did feel a bit of pain though. At first they only gave me a little bit of pain medicine. They gave me more after making me eat the worst-tasting saltine crackers in the world (seriously why do the crackers at the hospital always taste so bad? That thing was straight up cardboard…staler than stale…yuck!)
After successfully eat the sucky crackers, walking a bit on my own, and having the IV removed (which meant more blood all over the place), I was permitted to change back into my clothes and go home. I’d say I was home around 4 or 5pm. The whole procedure and everything didn’t take long at all.
A Post-Op selfie!
Overall I felt much better and had an easier recovery the second time around. I think the fact that I had 1 cochlear and could hear made things much easier, too. I could watch movies which was a great way to relax.
I did have a set back on the 2nd day post-op though. I had to go back to Jefferson to upgrade my processor from the Naida Q70 to the Naida Q90. It was the last thing I felt like doing and my family and I didn’t think it was a good idea at all to go all the way to Philly 2 days affter surgery, but Advanced Bionics was going to be there since it was an early upgrade limited to very few people (I was one of the lucky chosen ones) and it was the only day I could go and do this, so I didn’t have much of a choice in the manner.
I did okay at first. I was dizzy, so I held my mom’s hand a lot. We took the car rather than the bus because we thought it would be easier/more comfortable for us. I did get pretty tired and didn’t want to be there, but I tried to make the most of it. The Q90 looks and works almost identically to the Q70. It is a little smaller and feels lighter though which I like. One of the biggest differences with it is that the programs are almost all automatic (the exceptions being sound relax and the aqua mic) which I like the idea of. Changing programs can be really annoying. I haven’t been in an environment too much yet where I can really see how it works, but my mom did vacuum and I noticed it blocked out the noise a bit (although I could still here it) and I could carry on a conversation and still listen to music and hear everything with it on which was cool. When the programs switch I can hear it switch over, too. I am excited to go to a crowded, noisy restaurant or something so I can really see how it works. Also, once the other ear is activated I’ll be able to unlock many more features that will allow both ears to work together which will be awesome.
Louisa, the woman from Advanced Bionics (I forget what she said her name was) and Dr. Willcox (we saw him in the hallway) all said I looked great considering I was just 2 days out of surgery. By the end of the appointment I started to get weathered and worn out and very sleepy though. It was an important appointment, but very stupid to go out and do that much so soon after surgery…
I felt okay afterwards, but very tired so I took a nap shortly after getting home. It wasn’t until after dinner when I started to get into trouble. After dinner when I stood up to throw my trash away I suddenly got very lightheaded and everything started to go completely black. I immediately sat back down and had my parents give me a drink of Coke. I took my blood pressure and it was only about 55 for a top number! To give you an idea of how scary this was — it was about the same range as my grandmother’s blood pressure right before she died. My parents were scared of course but we were nervous about calling an ambulance and going to the nearest ER since that for me is Kennedy in South Jersey. Most South Jersey hospitals are awful, and that one is definitely one of the worst. We were afraid to go there and have them mess up Dr. Willcox’s work, so we decided to wait it out and just keep monitoring my BP. I drank more soda and high-sodium energy drinks and put my head down for a bit. We did get my BP back in the 100-range which put me out of the woods, thank the Lord!
After that episode I took it easy for awhile barely doing much of anything besides sleeping, watching movies, coloring, and reading. I wanted to go back to work, working from home, that Thursday but decided it was best to just rest up so I took off for the rest of the week.
By last Saturday I was beginning to get a bit depressed. I felt useless. I wanted to go outside and do things and interact with people, but I knew I had to recover, especially after the whole BP issue. My depression was much better than it was after my first implant though, probably because I could at least hear this time around since I had one cochlear already.
I went back to working from home on Monday. It was a busy day back but it felt so good to be back in the swing of things. I did pretty well being back to work. I just got tired after lunch from my pain medicine and antibiotics, but I took a nap after work and I was fine.
I had my stitches removed on Wednesday. I was supposed to get them out on Thursday with Dr. Pelosi, but my surgeon decided to come in and do it on his day off instead because he really wanted to see me. My BP was a little low at 94. They don’t believe it was due to the surgery, but rather that I have been too relaxed. Dr. Willcox told me to be more active and that should help. I have been more sedentary than normal because I was afraid I was doing too much. Figures haha. I’m anxious to get back to the gym and taking long walks and doing more though! Getting the stitches out hurt more this time than I remembered from last time, especially the areas with the knots. There was one stitch that got my hair caught in it and that one really hurt to have taken out. I was glad to get them removed though!
I had a few stitches…
Once my stitches were removed I met with Louisa’s assistant who’s completing her residency, Alyssa, to test the equipment and to make sure the electrodes all worked. It was just like last year. I was able to hear all of the beeps which seemed like a good sign. They seemed louder this time around, too. It was pretty exciting. I got to see my new silver processor, too. It looks really cool! I can’t wait for my activation so I can actually take it home and wear it!
Thinking of my activation, there’s a chance that we may be moving the date up a bit. I have it scheduled with Paula on the 24th (Christmas Eve) but Alyssa will be there on the 23rd so we’re trying to move it up to that date. The only thing is that Alyssa doesn’t have her license yet and isn’t normally allowed to do activations on her own. But my mom and I don’t have a problem with it at all. Honestly, I like Alyssa better than Paula and Louisa. I do like both Paula and Louisa, but Alyssa has a great personality, is very professional, and seems to really know what she is doing. Even though she isn’t licensed yet, I trust her and I know she’s helped with activations and knows what to do. They said they’d have to ask the board of directors for permission and would get back to us on what they say about it.
I finished my antibiotic and pain medicine yesterday. I was also finally allowed to wash my hair for the first time in 11 days which felt amazing. It was definitely getting pretty nasty lol. It didn’t really hurt to wash it. My ear feels completely numb still. I tried to avoid really touch it or rubbing around that area/the incision though. I have a lot of dried blood behind my ear too which I’m struggling to get off.
After my shower I took a look and tried to find my incision/where they shaved my hair. They were so neat with it that I really can’t even take a picture of it because you can’t see it lol. It’s kind of underneath my hair and completely invisible. Dr. Willcox is like an artist with how he does his cuts. It’s amazing.
The first post-op shower is the best feeling ever.
Today was the best I’ve felt in nearly 2 weeks. I was still working from home, but much more with it. I didn’t take any pain medicine at all or even a nap. I cleaned the house when I finished working. I’m also back to eating completely solid food (that took awhile, even though I didn’t have a sore throat, it was hard for me to bite down/chew things for awhile because of the pressure it put on my ear).
I will really be back to my self on Monday. On Monday I’ll be back to working in the office and depending on how well I’m feeling, back to the gym as well.
I took a break from working on my book with my surgery, but I’m pleased to announce that it is almost complete. I met my goal of writing over 50,000 words in November during NaNoWriMo and have a total of over 90,000 words. I will of course need to update it with everything since going bilateral, but overall I’ve made great progress with the first draft and I’m excited to see it complete soon.
That’s about all I have for now. I’ll update after the 24th (or 23rd) after my activation! What an amazing Christmas gift and blessing this will be!
Last night I attended Advanced Bionics’ online webinar that was all about the new Q90 processor. This was really important for me since I recently found out that I am eligible for an early upgrade to trade in my current Q70 processor for the new Q90.
The webinar was very informative. The Q90 looks almost identical to the Q70 but it is smaller and thinner. It also comes with a few new features to help you to adjust to different sound environments and to block out distracting background noise better. It comes with the option of using a smaller battery that is about half the size of the smallest battery used by the Q70, but all of the sizes used with the Q70 are still compatible with the Q90 as well. The battery life is the same in the Q90 as it was in the Q70. One of the biggest advantages with the smaller battery size option (other than the obvious comfort) is that it will fit inside the AquaCase better.
The three new programs offered in the Q90 are the AutoSound, SoundRelax and EchoBlock.
The Auto Sound feature adapts automatically to the environment you are in. It helps you to better manage noise for more comfortable listening. Sound Relax makes sudden sounds more comfortable to hear. Advanced Bionics gave the example of a golf club hitting the golf ball or dishes clanking together. These sounds can be a bit annoying for a cochlear implant user, so with the automatic Auto Sound feature, this noise is softened a bit to be more comfortable. It doesn’t affect alarms or safety sounds though, so you won’t have to worry about missing something important with this feature. Lastly, EchoBack is the one program that is not automatic. EchoBack allows users to hear better in noisy environments.
The Q90 makes me really excited about going bilateral in less than 10 days. I liked hearing about how there were some features that would be only available for bilateral cochlear implant recipients like the StereoZoom feature. There will be features that will allow users to stream sounds through both cochlear implants. They will work simultaneously together to support each other. This will help to create an overall better listening experience.
I asked one of the women doing the webinar if I would be receiving the new Q90 when I received my second implant on November 3oth (It’s not widely available yet, I’m just lucky to have been chosen to upgrade my Naida Q70 from my first implant for it ahead of time) and she said yes so I’m very excited about that.
Overall the webinar was very informative. I’m excited about the new Q90 processor. It doesn’t sound like it will be drastically different from the Q70, so it should be easy to adjust to.It sounds like it will help to give me clearer sound and an even better listening experience (if that’s even possible).
I know what you’re thinking…
I thought you said your first cochlear implant support group meeting would be your last.
And you’re right, I did.
Back in May I went to my first cochlear implant support group when they did a discussion on cochlear implants and dementia. It was extremely depressing and I felt the whole atmosphere to be rather negative. I vowed I’d never go again.
Well, things happen. I kind of lied.
It’s been a weird week.
I broke up with my boyfriend. If you read my blog on a regular basis, you’ll know I loved him very much. I still do. I think a part of me always will. I’m not going to go into the details about that here. Let’s just say it happened, it hurts like hell, and I needed to get out of the house.
A friend of mine, Wayne, helps to run the Cochlear Implant Support groups for the Haddonfield area (the ones closest to my home). We are friends on Facebook and Wayne and I talk on a regular basis. He knew that I had just broken up with my boyfriend and was really hurting, so he told me I should come to the next support group. He told me it would do me good to get out of the house and “you never know who you’ll meet” (I mentioned on Facebook how I needed to make friends. My boyfriend was not only my best friend, he was my only friend. Breaking up with him was more than just breaking up with a boyfriend, it was breaking up with my best friend, too). I kind of felt obligated to go after that. Plus, I figured it was a welcome distraction. Sure beats staying at home, feeling sad, and crying myself to sleep anyway.
The topic was actually pretty interesting. It was on hearing preservation after the cochlear implant surgery. You may remember me mentioning previously that I still had the same amount of hearing left in my ear post-surgery. I was interested in hearing what they’d say about that since the topic was definitely pretty relevant to me this time around.
Dr. Pelosi, assistant professor and otolaryngologist at Jefferson University, was the one doing the presentation. I have heard quite a bit about Dr. Pelosi especially when I did my early research for a cochlear implant surgeon. My first impression is what any newly single 20-something year old girl would think, “He’s really hot”.
Hottest doctor, ever?
But of course looks are not everything and I have a really weird thing with people who are highly physical attractive. I assume most highly attractive people are jerks. I’m not outright saying I thought Dr. Pelosi was a jerk. I didn’t think that at all, he seemed like a nice guy. I did however get the impression that he was a little coincited. But he was a nice guy and he was smart.
Dr. Pelosi made a lot of interesting points about hearing preservation post-cochlear implant surgery. There were many things I didn’t know like how the size and shape of the electrodes may play a role in hearing preservation. Also, the speed at which they insert the electrodes can have an impact. Dr. Pelosi said that thinner curved electrodes inserted more slowly may help with post-implantion hearing preservation as opposed to thicker, straighter electrodes that are inserted more rapidly. This is because there is a nerve by the cochlea that the electrodes are inserted near. Ideally, surgeons want to be as gentle as possible when inserting the electrodes so that they don’t hit that nerve. Hitting the nerve is what can cause a loss of residual hearing. With the thin, curved electrodes inserted slowly, there is a smaller chance of tearing or otherwise damaging that nerve.
The only thing I didn’t really like with Dr. Pelosi’s presentation was that he used a lot of really technical terms and big words. I felt like some of that was because Dr. Pelosi is a very young doctor — much younger than most of the people at the support group — and he may have done that to try to prove himself to them. But I would have rather he used less complex language that is easier to understand. I think had my surgeon who is older and more experienced, Dr. Wilcox, done the presentation I would have understood it a bit better.
At the end of the presentation a lot of people asked questions. I liked that the group of people were mostly different from the group that attended the first support group meeting I went to. They were more interested and less negative about cochlear implants. Most of the questions were about the electrodes and the hybrid cochlear implant which Dr. Pelosi also touched on. I realized that I didn’t know how many electrodes I was inserted with, so I asked Dr. Pelosi if that mattered. He told me it didn’t; all that mattered was that it worked and that I knew what kind of device I had which I did. I kind of figured that much.
Some of the people asked beyond stupid questions that I had to try not to laugh at. The whole “there are no stupid questions” can really be a lie sometimes. The stupidest question I heard was from a guy wanting to know why they couldn’t tune his cochlear implant electrodes to match that of a piano or something. Obviously he was a musician who lost his hearing later in life. He swore he knew exactly which sounds he was and wasn’t hearing and how it should sound.
Maybe I am being biased or unfair because I’m not a musician and I don’t know much about musical tones or piano keys, but this doesn’t seem right to me at all. No, you don’t know what you are or aren’t hearing. You’re learning the sounds. You can’t just pick and choose which sounds you do or don’t hear or receive. It doesn’t work like that.The whole cochlear implant thing is a process and you’ll discover new sounds over time.You can’t just wake up one day and be like “I want to hear this piano key today and this one tomorrow”. I feel like that should be common sense, which I felt this guy obviously didn’t have. Based on the look on the faces of others who attended the meeting and even Dr. Pelosi (who remained extremely professional and didn’t outright laugh in the guy’s face), they agreed.
After the meeting I made a point to talk to some people and connect with them. I won’t lie; half the reason I did this was for networking purposes…. I am writing a book about my experience, afterall! I need to build my connections so I can sell my book once I finish writing it and have it published. But I did genuinely enjoy talking to the people. They were all much older than me and most of them had very different stories. A lot of them lost their hearing later in life or had an illness that wiped out their hearing. I’m not sure any of them were born deaf or hard of hearing like I was. I swapped stories with them and also told one woman who was about to be activated good luck and not to be afraid. I reminded her that she might not like the way things sound initially, but if she worked with it, it would get better.
One thing I wish though is that more people my age would come out to these events. My mom told me that maybe I can help work on getting people there or maybe I can even look into starting my own group for people my age. I know that I’m not the only deaf or hard of hearing 20-something year old in NJ. I’m frequently told that deaf/hoh individuals are getting younger. I’ve seen them, too. When I worked at Walmart I saw many kids with cochlear implants. I always thought that was pretty cool. I also talked to a lot of people around town who have told me they have kids with cochlear implants. I think the reason why they don’t come to meetings or support groups is that they feel ashamed by it — they want to hide the fact that they even have an implant. That is sad to me. There is no reason to be ashamed. My cochlear implant is the best thing that ever happened to me. I talk about it all the time and I flaunt it because it makes me proud! I was given an incredible gift from God — the gift of hearing. I want everyone to know it. I just need to get more people my age to see things like that. I’ve always been deaf and loud, but maybe now I need to get a little louder.
Since getting my cochlear implant last year I have had many people come to me and ask me questions about it. I love answering questions about my cochlear implant and I love that people want to ask about it. It’s important to ask a lot of questions especially if you are considering having the procedure done yourself. Getting a cochlear implant is the best thing I’ve ever done, but it doesn’t change the fact that it’s still surgery. You need to know the risks and what to expect to determine if it’s right for you (which I obviously decided it was for me). Your surgeon shouldn’t mind answering your questions, and if he does, then that right there should be a red flag for you that you need to find another surgeon.
The first time I met Dr. Wilcox a year ago I came to him with a grand total of 32 questions. He answered every single one of them without hesitation. He wasn’t annoyed at all by any of my questions; he was more than happy to answer them and asked if I had any more for him! Here are the 33 questions I asked my surgeon prior to my first cochlear implant surgery:
- What are the risks?
- Are cochlear implant patients more likely to get meningitis? Should I get a meningitis shot? (The answer to this was no by the way. I never did get a meningitis shot.)
- Can the surgery cause an increase in headaches or migraines? (Another no.)
- Is there any chance the magnets will react to metal or other materials? (No reactions but my external magnet does stick to things which I think is fun lol)
- After it heals will I be able to put things in my hair and/or wear hats? (Yes I can but some hats cause my magnet to fall off I’ve found).
- Will I lose my residual hearing? (This is usually a yes for most people. I am the exception. I still have the same amount of residual hearing. It depends on whether or not your surgeon hits the nerve. Mine was able to avoid it, but they usually can’t avoid hitting it).
- Do you just do one implant at a time? Which ear do you suggest doing first? Should I have them both done eventually? (This depends on your surgeon. Mine does one at a time and it didn’t matter which one I did first. They usually like to do the worst ear first but mine are the same. He recommended I do both but said it was always my choice.)
- How long have you been performing the surgery for? (I forget the answer, but it’s a long time lol)
- Will I be able to use headphones after everything is healed? (This was a yes but I have to avoid metal ones because they can stick to the magnet).
- What is the chance that I’ll be able to talk on the phone once implanted? (He couldn’t really give me an answer because everyone is different, but I am able to talk on the phone with ease now. It did take me about a month to get to that point though).
- How soon can I be activated after surgery? (I was activated exactly 1 month post surgery).
- How often should I go for a mapping? (This kind of depends on the person. I believe in the beginning it was once a month then it dropped down to once every 6 months and eventually once a year I think but if you’re not happy with the mapping you can request them sooner).
- Do they take batteries? Are they rechargeable? If not, where do you buy them? (I have three rechargeable batteries and one that is not. I don’t like the none-rechargeable one to be honest. I bought the batteries from the hospital since I have trouble finding them in stores but I’m told some people can find them at the drug store. Online too.)
- Are the implants water resistant? (No, they are not but there is an aquacase that makes it water proof! :))
- Do the implants come apart? (I can’t move the implant in my head of course but the external part comes off and I can detach everything).
- Can I wear my implant to the gym? (Yes but I learned to use the aquacase after having too much sweat cause the battery to shorten out and it not to work right.)
- How will the implant affect tinnitus if at all? (No different. If anything I think I hear it less now. I could feel the electrodes moving in my head before I was turned on though. That was pretty neat.)
- What are the parts of the cochlear implant? (I’m too lazy to answer this now. Basically internal, external with the battery and mic)
- Will I be put under anesthesia for the surgery? (Yes I was. I was knocked out in 2 minutes and didn’t feel a thing. I woke up unaware of where I was and what was happening and I was “weird” to put it lightly.)
- When would be the soonest date I could have the surgery done? (I had surgery performed exactly one month after meeting my surgeon, but it depends on the hospital, schedules, and how quickly you get testings/approvals)
- Is there currently a wait-list for this surgery? (No, there wasn’t. Again this depends on your hospital).
- How much more clarity and volume should I expect to get from the implant? (I’m not sure what he said but I ended up with about 93%!)
- Is there a chance that I’ll experience issues/soreness with my jaw and/or throat after surgery? (Yes from the breathing tube. I had a very sore throat and couldn’t eat solid food for about a week or 10 days).
- Will my face go numb after surgery? (This can happen if the surgeon hits a nerve. My surgeon was very well aware of the nerve and said he knew how to avoid it. He was true to his word!)
- Will I lose my taste buds after surgery? (See #24).
- I work on a computer all day. Can this cause issues such as static with my implant? (No.)
- Will the implant last for life? (Internally, yes. Externally it may be upgraded every few years as advanced in technology are made).
- How will my implant work with my hearing aid for the ear that does not receive an implant? (You can sync them together or something if you have Phonak hearing aids. Which I don’t. So it really didn’t make a difference).
- Will I be able to adjust the volume on my Cochlear Implant on my own or will it be computerized? (I can adjust it to an extent. If I ever need significant changes I can have my audiologist reprogram it on her computer).
- Will I feel electric jolts after being activated? (I did before they turned it on a bit).
- Can you give me more information on EAS implants? Would you recommend that for my type of hearing loss? (I honestly don’t remember what any of this means).
- Will the implant whistle like how my hearing aids do? (No they don’t and I’m quite thankful for that!)
This second time around I have far less questions, mainly because I’ve already been through it once and have most of my questions answered. But I still have a few including:
- Can I sync my two implants together (Not really. They are working to combine them but haven’t really done it successfully so far. However, I may be able to match the setting or something like that so they work together).
- Can I wear my first implant when recovering from surgery for my second one? (Yes).
- What kind of testing will I need to go through? (Since it’s only been a year since my first surgery, I don’t have to go through most of them again. I just need another evaluation for insurance purposes).
Those three questions are really all I have so far, but I’m sure I’ll think of more to come. I’m very excited for round 2 of this incredible, blessed journey!
Warning: before you read any further, this blog post might be sickening sweet/cute. You might puke a bit. Don’t say I didn’t warn you.
I’d like to share a glimpse of my love story today. I’ve already spoken many many times about how getting a cochlear implant helped me to strengthen my relationship with my boyfriend. I mentioned how supportive and amazing he’s been. But I want to focus a bit more on the before and after story here and also clear up some common misconceptions about how the deaf/hoh community forms romantic relationships or engages in dating in general.
I had my first real boyfriend when I was 21. Sure, I technically had a boyfriend before then, but I don’t think it really counts (I was only 14…a freshman in high school and we hardly ever saw each other after school — not really “dating” per say). It was the first experience I’ve ever had with serious dating and how my hearing could effect my relationship. It was a terrible relationship. My boyfriend at the time treated me very poorly. If I didn’t like or agree with something he would violently shout at me. My hearing (or lack thereof) only made things a hundred times worst. He had no patience for me at all. If I needed something repeated, especially more than once, he’d get very frustrated at me and scream and make me feel bad. Our relationship ended up getting very verbally abusive, and after spending just 5 months in it I began to not only feel worthless and unloved, but scared. I did the smart thing and left the relationship before he had the chance to hurt me beyond what his words already did to me.
This night made me wish my cat was my date.
I had two more relationships after that. One was very short and ended simply because we were not on the same page. We had a 10 year age gap in between us and had different backgrounds, pasts, and ultimately, futures. Simply put, we were not going anywhere. My hearing didn’t make much of a difference in this relationship either way, most likely because the relationship started and ended all over the course of a month. However, I will say that he was not a bad person and we are still friends. In fact, he’s helped me out a little with my writing career by introducing me to other writers looking to talk to deaf/hoh individuals. Just like how with hearing people some relationships just lack chemistry and don’t work out, the same is true for the deaf/hoh community.
The deaf/hoh community is also not immune to drama, cheating, and heartbreak. In my third relationship, I had all three. My boyfriend at the time always seemed pretty supportive of my hearing impairment. Sometimes he would even share with me news stories about new technology and other articles about cool things happening in the deaf/HOH community. I fell in love with him int he craziest, most twisted love story imaginable. When our relationship was at it’s peak I learned that he wasn’t into it quite as much as I expected. He was actually cheating on me the whole time, and not just that — he was getting married to the girl he cheated on me with!
But just as any hearing person can fall in love, out of love, and in love harder than ever before, so too, can deaf and hoh individuals. And that is precisely what happened when I met my current boyfriend, Larry.
I think that when you meet the right person that you’re supposed to spend the rest of your life with, you just know. That’s how I felt the first time I met Larry on OKCupid back in May of 2014. So I did what any girl would do when she falls hard for a boy and doesn’t know what he’s thinking or feeling — I got scared, freaked out, and ran away (okay, maybe no sane girl would do that…but I never said I was sane, did I?).
They say if it’s love to let it go, if it comes back it’s yours and that’s how you know.
I had to make a couple of mistakes before I could get it right. I think that’s true for most people in relationships whether they be hearing, hard of hearing, or deaf. That was definitely the case for me. But I did come back around, three months later and Larry was there waiting for me. We picked things up right where we left off. The past doesn’t even matter a bit.
This second time around I knew I was lucky. Most guys wouldn’t come back for a girl that has essentially abandoned them and left them in the cold with no explanation three months prior. But Larry’s different. I always knew that. That’s why I loved him. I made sure to hold on so tightly and never let go this time around.
Larry and I tell everyone we took things slow and took our time to develop a friendship before we got together. That’s kind of debatable though now when we both look at it. For me it was taking things slow compared to my last relationships. But we had our first day on September 1st and 12 days later made it official.
This was our first picture together, taken just a couple hours after we officially became boyfriend and girlfriend
One thing that is different for those who are hard of hearing/deaf and those who can hear when it comes to dating is first dates. I think they are always a bit nerve-wrecking for anyone, however even more so when you can’t hear. You not only have to worry about what you’re going to wear and not sounding stupid, but you have to worry about your hearing, too. Normally when I am planning a first date with someone I stress about picking a good place. Movies aren’t good because of course you can’t really talk, getting caption glasses are a bit of a hassle and very awkward especially for a first date, and without caption glasses I can’t hear anything at all. The mall is so much loud noise I couldn’t even hear myself think. Dinner seems pretty safe, but even that called for much stress and anxiety because I always had to choose a place that was almost guaranteed to be quiet — which when you’re planning a date on a Saturday night seems nearly impossible. It definitely can’t be a place with a bar, that’s for sure.
It took me about 3 weeks to figure out what to wear for our first date…this was the result.
With Larry choosing a place wasn’t as hard as it was for most people I’ve dated in the past. I knew I wouldn’t something laid back and fun so we could be comfortable. Chuck E. Cheese was my dream first date place, but I could never convince anyone else that it was a good idea and Larry was no different. So I compromised and chose my second choice place — Nifty Fifties.
I had been to Nifty Fifties for the first time a few weeks prior for my mom’s birthday and did okay with being able to hear. Not 100%, but compared to most restaurants I did okay so I thought I’d be able to get by pretty well.
Larry and I’s first date unexpectedly ended up falling on Labor Day, and it couldn’t have worked out better for us. I guess not many people think of going to Nifty Fifties for Labor Day. We were some of the only people there. It was quiet and I could hear him fairly well, even after lunch when we went outside to play mini golf. My nerves went away pretty quickly and he became my best friend within about 2 minutes of meeting him.
It’s safe to say after that initial date the question wasn’t “Will there be a 2nd date?”, but rather… “When can I see you again?” .
I’d love to say that all of our dates, especially pre-cochlear implant, were as easy as that initial first date. But that most certainly was not the case. As I wrote yesterday, bowling pre-cochlear implant, which is what we chose to do for our 2nd date, was a bit of a challenge. We couldn’t really talk at all and it got a bit frustrating. However, unlike my first ex, Larry never got mad at me for not being able to hear. He always looked for ways to help me and support me. He never once yelled at me, belittled me, or made me feel worthless. He always did what any great boyfriend should do — loved me.
Larry and I have been through a lot in the 11 and a half months that we’ve been together. We seen the strength of our relationship tested time and time again, even before we started dating! Within just a couple of days of us reconnecting, I began seriously considering getting my cochlear implant. From day one he was always very supportive of me saying, “No matter what you choose I’ll support you every step of the way”.
Of course, when you’re in a new relationship and everything is going well you really want to believe that, but you can never really be so sure. People say they are going to do things all the time, but that doesn’t mean they will do them or that they really truly believe that. Take for instance the case with my first ex. He told me he loved me, that he’d always be there for me, and he’d never hurt me. I believe our relationship turned abusive within three months or less of dating. Needless to say, his words were all a bunch of empty lies.
But it was different with Larry. He not only said it, he proved it.
I got scared a lot especially as things started to move forward more and more with my surgery. When I got down to about a week before my surgery I panicked frequently. I would sometimes text Larry in tears asking him things like “Are you sure you’ll still love me if I do this? Do you realize I’ll have a magnet stuck to my head? Will you promise to help me with this?” He always assured me he’d help me through everything — we are Awesome Sauce and Applesauce — and more than that we are teammates — we get through everything together.
Awesome Sauce and Applesauce, forever teammates, forever lovers.
Larry always got so happy and excited for me whenever I had a new update. He was always working when I had my appointments, but he was always the first one to get the news. He wanted me to get my cochlear every bit as much as I did if not more. Larry also always helped me to be confident and more positive. When I would get scared and wonder whether I was making the right decision or if the cochlear would even work Larry always reassured me that it was God’s will and that everything would work out great and he was always right.
After my surgery Larry stayed true to his word and was always by my side. He was on the road throughout the week, but he always texted me whenever he could and visited me on the weekend. The first time he visited me after my surgery he bought me flowers, a card, and a small stuffed animal to cheer me up. I was very self conscious about my appearance since I had part of my head shaved, a ton of stitches, and was unable to watch or comb my hair, but he always told me I looked beautiful…and they weren’t just words — he meant and proved every word of it.
When you look like this and your boyfriend still calls you beautiful, you know you’ve got a keeper.
Healing after my surgery was a process and presented some challenges for us in our relationship. For one I got dizzy and drowsy a lot for the first couple of weeks. I couldn’t stay awake for long periods of time or even really sit up at all. The first couple of times he came over post-surgery our visits were very short because I’d fall asleep straight away or get dizzy. He also had to wait over a month before kissing me. We were both too afraid that I might get hurt if I tried to kiss him, especially since it hurt to move my mouth due to the pressure it put on my ear. But he didn’t complain not once, he understood and stood by and supported me.
Post-activation was and is a whole nother new journey for us. Unlike how most YouTube videos show it, I didn’t just get switched on and have everything perfect — I had to really learn how to hear things. I had my mom working with me on different words and sounds and Larry working with me a bit more on general communication — my phone skills to be more specific. He made me overcome my fear of the phone by calling him on a daily basis. This was essential for us since he is a truck driver and can’t text and drive for obvious reasons.
Larry and I definitely had our share of laughs with my cochlear, too, especially in the beginning. A cochlear implant is a magnet — so like most magnets, it’s going to stick to metal. My boyfriend has a metal truck. My cochlear implant can and does get stuck to it on a regular basis. There’s been many times when at the end of a date we stood outside of his truck, kissed each other good by, went to move and somehow my head ended up getting stuck on his car door. These times were never awkward, but funny. I think that when you can laugh at things like that in a relationship and not get embarrassed or feel awkward, it’s a sign that you’re in the right relationship.
We’ve enjoyed the journey of discovery together as well. Larry can hear anything normally, but he gets a kick out of watching me because he knows that it’s new for me. He’s not selfish in what he can hear, but rather, he wants to share it all with me. When I first got activated it was almost like a game for us. He played me bagpipes, celtic music, native american indian music, let me listen to the sound of coin change falling, and bought me a couple of rubber duckies (which currently live on my desk at work to make me smile during hard days) to listen to because I was so amused by the sound of the squeaking. When he went on vacation he even bought me back a bell as a souvenir because I was so amused by the sound since it was something I could never hear prior to getting my cochlear implant.
These ducks now live on my desk at work and make me smile whenever I look up at them and remember why I have them…
I realized that throughout my cochlear implant journey (which is far from over — in fact, I don’t think this is something that can ever really end in my life, it’s constantly expanding), I not only fell in love with Larry and enjoyed celebrating victories, sharing nerves, anxiety, and all of the roller coaster of emotions it gave me, but Larry fell in love with me, too. The things that would’ve seemed like a hassle or a problem with other people are nothing for Larry. Larry never minds having to help me adjust my cochlear, holding my case for me when I need to take it off for amusement park rides, or just being a source of comfort for me when I need it. He realizes that it’s all a part of his job as my boyfriend, and this is a job that he is very proud of and I don’t think he would want things any other way.
There are some things in life that are universal. We all live, we all die. We all smile, we all bleed. We hurt, and above all, we love. Sure, being deaf/hoh and/or getting a cochlear implant may change many things in your life, but it doesn’t change your ability to fall in love. And it most certainly does not make you love-less or unworthy of love. When you find the right person, they will love your for the person you are, not for your ability (or lack thereof) to hear or even the devices you use to hear. They will love you for you, every single inch of it. And that’s exactly what I found in Larry.