Hey guys! Hope all of my East-coast friends are staying warm and dry in this crazy snow storm!
I don’t know if it’s the snow or what, but I received an incredible surge of inspiration and had a major Eureka moment in regards to the opening chapter of my memoir. I thought a better opening would be something more reflective in which I show what is going through my mind moments before I received my first cochlear implant tied in with flashbacks on my life before I was implanted and the time when I was first diagnosed with profound hearing loss (the yellow brick road chapter).
This needs A LOT of work still, obviously, but I’m pretty happy with the first 1,000 which are the new words that I added today. I am also in the process of interviewing my mom for more details with the original yellow brick road chapter. She said she’d need some time to think about many of the questions I had as she tries to remember, but I’m hoping to get some answers from her soon to better flesh out that chapter/add more details.
Regardless, I hope you enjoy the revised opening chapter. Feel free to leave a comment on this post letting me know what you think!
Entering Into a Technicolor World of Hearing
I’m lying in a hospital bed at Jefferson University hospital in Philadelphia. There is an IV inserted in my right arm and Mom is standing to my left. Dad, who has never been a fan of hospitals, is outside in the waiting room. Everything looks like your typical hospital setting except for two things:
- I am not sick or injured.
- I cannot stop smiling.
My journey begins now. Today I will receive my first cochlear implant, and if all goes well with the surgery and recovery, next month I will be activated and Lord-willing, hear, like a normal hearing person, for the first time in my life.
If this works, my black and white and sometimes sepia world will become technicolor and I will not just hear the sounds I’ve always heard, but I will be able to understand what those sounds are and hear them the way they are supposed to sound. Conversations will sound like actual conversations (without me needing to exhaust myself by practicing heavy lipreading). I’ll know when music is playing, and it will sound like actual music. I may even be able to hear what a flute sounds like. I’ll be able to go to the movies without having to awkwardly ask for a pair of caption glasses which A. The ticket salesman won’t understand, or B. won’t work anyway. After the movies, I may be able to go out to dinner with my friends or a date and order my own food without awkwardly staring at another person as if to say, “Please lend me your ears, I can’t hear a thing the waiter is saying.”
If this works, my world will forever change, hopefully for the better.
If this doesn’t work, I risk losing the approximately 7% total residual or natural hearing I have left in my left ear. This residual hearing is currently being amplified by hearing aids.
Amplify [am-pluh-fahy]. Verb. – Increase the volume of (sound).
Notice how it doesn’t say anything about clarity or being able to understand or comprehend what those sounds are. That’s what’s missing. Hearing aids amplify sound, but they don’t give me any clarity. My cochlear implant is supposed to fix that. But if it doesn’t work, I’ll lose my ability to even amplify sounds. I’ll be left with absolutely nothing in my left ear — silence.
I made a list of the things I want to do post-cochlear implant activation, should this work. It looks like this:
THINGS TO DO POST-COCHLEAR IMPLANT ACTIVATION
- Get caught in the rain.
- Experience church in a whole new way.
- Watch movies without captions.
- See a movie at the drive-in.
- Hear a flute, bell, violin, and any other instrument I couldn’t hear before.
- See an orchestra.
- See a play.
- See a ballet.
- Listen to Pink Floyd’s “Dark Side of the Moon” in its entirety.
- Talk on the phone.
- Order food out on my own (restaurant and takeout/Dunkin).
- See a concert (preferably Good Charlotte).
- Hear my cat meow.
- Listen to the radio.
- Hear a cricket chirp.
I didn’t even want to think about what my life would look like if the cochlear implant didn’t work. Would I be forced to learn ASL? Would I join the Deaf community? Could I manage to get by with the remaining, un-implanted ear? Thinking about what would happen if the cochlear implant worked was fun but thinking about the alternatives was terrifying.
I had faith and trust in God that the cochlear implant would work. I prayed constantly and attended church as much as three times in a single day. For the weeks leading up to this day I had both Gloucester County Community Church and Washington Baptist Church praying for and with me and even met with the deacons and deaconesses at both churches.
“God is going to give you an incredible gift. Now it’s your job to figure out how you can use it to serve the Lord,” the deaconess at whose name I cannot recall told me as I met with her in the chapel at GCCC.
I was so excited to begin my new life as a hearing person that as the date of my surgery came closer, sleep became more and more difficult. I’d stay up for 20 or more hours at a time, keeping myself busy by binge watching all 9 seasons of How I Met Your Mother and when I got bored of that, I’d clean everything in sight. I no longer had any concept of time.
“Do you really have to clean your toilet at 3 in the morning? I’m trying to sleep and all I can hear is your toilet flushing,” Mom complained.
“No more cleaning. I don’t wish to smell all of your chemicals first thing in the morning,” Dad pleaded.
Last night, I could hardly sleep at all. The Patriots played the late night 8:15pm game against the Colts.
“Don’t stay up too late, you have a big day tomorrow. You know the Patriots are going to win anyway,” Mom warned.
“Oh, let her stay up. She’s just going to sleep through the surgery anyway. Does it matter if she’s tired?” Dad said.
I stayed up for the whole game and then spent most of the rest of the night in bed, browsing Facebook, Twitter, and Instagram on my phone. By 5:30 AM, I was wide awake, dressed in my brand-new button down fleece pajamas (mom said there was no sense in wearing real clothes, I’d be better off being comfortable and I’d need to wear button downs to avoid pulling shirts over my head post-surgery anyway), and ready, a full two and a half hours before I was scheduled for surgery.
Now the day is finally here. Dr. Wilcox just came in to tell me everything would be okay and to instruct the anesthesia team to begin. I have a plastic mask on my face, covering my mouth and nose. I can hardly keep my eyes open anymore as I feel my body surrender itself to the anesthesia.
When I wake up, I’ll be a cyborg.
In another month, I’ll be activated, and I’ll finally be able to hear, Lord-willing.
If this works, I’ll be able to hear for the first time in my life, or at least, the first time since my mother discovered I was deaf at the mere age of two.
When I was two, Mom would call out my name, but I never responded. When she mentioned it to my pediatrician during my next checkup, the pediatrician 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 clapped behind my back and I didn’t flinch, she knew something was wrong. Against my pediatrician’s advice, 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 hearing loss. What we didn’t realize was how severe my hearing loss was. Miss Terri explained that my hearing loss was profound, meaning the only sounds I could hear were those that were at a volume of 90db or higher such as airplanes, helicopters, firetrucks, and possibly a lawn mower. Hearing aids were recommended to amplify these sounds, but my ability to hear and comprehend sounds, even when amplified, would always be a challenge.
After being diagnosed with profound hearing loss, I made the journey to Camden once every two weeks for speech therapy lessons. 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,” 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,” said mom.
“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.
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. There was nothing actually magical about it; it was just a regular mirror that I was allowed to draw on with magic markers, but I always loved this activity. I was never allowed to draw on the mirrors at home. I thought that this mirror was special since I could draw on it and the markers would wipe right off when I was done. As a two-year-old, the only logical explanation for how this could work was that it must have been magic.
Before I could draw on the mirror, Miss Vicki put me to work by having me practice my speech.
“Okay. Let’s practice our “Sh” and “Ch” sounds,” she’d say. “We’ll start wi“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.
“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.
“Suitcase,” 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. I was able to live my life in black and white or sometimes sepia. My world was full, but not always beautiful or complete. The older I got the more I realized that living as a deaf girl in a hearing world was a lot like living in a world without color.
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.
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.
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.
Ever since I got my first cochlear implant I have wanted to get my second ear done. Getting my cochlear implant is the best thing I’ve ever done. Read pretty much any of my past entries on this blog and you’ll see why. It’s given me many new opportunities that I never had before. I can enjoy music like never before, I can call my boyfriend when he’s on the road, I was able to take on a new role at work as a Digital Marketing Manager where I’m making calls to clients on a daily basis, and I can even hear while swimming for the first time ever!
Some people end up going bilateral all at once. This is especially common when it comes to young children. However, more often than not people get one done at a time. This is what my surgeon recommended to me. He recommended waiting at least a year before getting the second one done so that I’d have time to get used to and fully adjust to my first implant and hearing all of the sounds. Well, we are coming up on a year now…
This past weekend I was talking with my mom about my upcoming appointments. I knew I had one with my audiologist, Louisa coming up. I originally thought it was in October, but it turned out it was actually not until December. We still felt like we were missing something something, so we decided to call and find out when my next appointment with my surgeon, Dr. Wilcox was. Turns out, there wasn’t one scheduled. Initially, we made the appointment for the same day as my appointment with Louisa in December, but I ended up moving it up a bit.
My appointment is on Wednesday, September 16th. This is a very important day. It is my grandfather’s birthday, so that right there feels like a positive sign. It is also the one year anniversary of when I first met Dr. Wilcox for my initial consulting appointment where I asked him 244353553 questions about cochlear implants. Wow. What are the chances of that?
My mom did a little research already on my health insurance. When I got my first implant I had Horizon insurance which covered almost the entire cost of the procedure. My work decided to switch health insurance providers a couple of months ago to Aetna. This will actually likely benefit me since it is a new health insurance provider that hasn’t already covered this surgery. Also, my mom found in her research that Aetna is known for being a big supporter of cochlear implants. It sounds very likely that they will cover the cost of me going bilateral.
I have a very good feeling about going bilateral. I really think I’m going to go through with it and it will be successful. I think it will be much easier than my initial surgery was. I know that I am a candidate, so I won’t need most of the testing I had to go through the first time around. I know I definitely won’t need a CT Scan and likely not an MRI either since I can’t get them done with my cochlear. I will probably just need a basic checkup with my doctor and blood work done. Other than that everything should be pretty smooth sailing.
Please keep me in your thoughts and prayers as I begin my journey into going bilateral. Yes, I’ve gained so much with my one implant. Some people ask me, “Why would you want to go through with the surgery and all of that again when you’ve already gained so much with just the one?” Here is my answer: two is better than one.
Imagine if you only had one arm and one hand. Yes, you could get by. Maybe that hand would be phenomenal for you. Maybe you’d catch and be able to hold things better than anyone could ever imagine. But would it still not be better to have two hands?
What if you were blind in one eye and could only see out of the other? Try this now: Close one eye and keep the other open. Try to perform a simple task like typing a sentence on your computer. You might be able to do it and do it well. Maybe you even have 20/20 vision in that one eye. Now, try it again with both eyes open. Chances are, you performed the task much quicker and more successfully.
Two is better than one.
I have been doing great with my one implant, but I can’t even imagine how amazing it will be with a second one.
I still wear a hearing aid in my other ear, but it’s as good as useless. Sometimes I forget to wear it. And when I’m swimming, I go completely without it. I never miss it. I don’t notice much of a difference without it.
However, not having my cochlear is a complete tragedy. I can’t hear a thing. There is practically a 100% difference (definitely 90% or higher) difference with having the cochlear vs. not having it.
God gave us two ears for a reason. Mine might not work the way they are supposed to, but through technology I have been given the chance to correct it and make them like new again. My new, bionic ears.
Why wouldn’t I want to seize that opportunity?
Yesterday I gushed about my boyfriend and how supportive he’s been about my cochlear implant and how my cochlear implant strengthened my relationship with him. My mom read it like she always does. After all, they always say your mom will always be your biggest fan. When it comes to my writing and pretty much everything I do in my life, that always proves to be true.
If it wasn’t for my mom, I never would have gotten my cochlear implant. That is the 100% truth behind it all.
I’ve known about cochlear implant for years and I’ve always been adamantly against them. I always swore that I would never get them. This is due in large part of being told the wrong information which quite frankly made me terrified of them.
But one day, everything changed.
They say that everything happens for a reason, and this just goes to prove that.
I work for a digital marketing agency, WebiMax. Back in September we were in the process of moving to our new Camden office located on the Waterfront. However, before we were able to move to this final location, we had a small temporary space located on Federal Street. It was too small for all of the employees to work in the office on the same days, so a lot of us worked from home on a regularly basis until our final move to the Waterfront was complete.
Our old, original office was located in Mount Laurel. I had a hearing appointment about once every 2 months or so. At the time, I would work at WebiMax from 7:30-3:30 every day. Their was a Miracle Ear located in Cherry Hill, so as long as I got done work on time making my 4pm or 4:30pm appointments wasn’t much of a problem.
RIP Mount Laurel office…
Coming to the Cherry Hill office became a routine for me. The Miracle Ear located in the Turnersville Walmart was much closer to my home, but this definitely worked better with my work schedule. However, when I was working at home, things changed. I live in Washington Township. Going all the way to Cherry Hill for a hearing appointment just to get my plastic tubes changed didn’t seem practical, especially when I could just go to to one in Turnersville that was 15 minutes away.
I got used to seeing my audiologist at the time, Mindy. She became like a friend to me. I always enjoyed seeing her. It was a risk going to the Turnersville Miracle Ear because Mindy wouldn’t be there and we didn’t have much success with other audiologists prior to meeting Mindy (you’d be surprised by how hard it is to find a good audiologist…). But we figured it was just a piece of plastic that I needed on my hearing aids. Really quite simple and pretty much impossible to mess up. Anyone would do.
So we went to the Turnersville Miracle Ear that day and met a new audiologist. Her name was Sherry. I didn’t know if I liked Sherry when I first met her. She was a lot different from Mindy. Mindy was always very bubbly and talkative. Sherry was very professional, but didn’t have the same bubbly personality at all. Sherry was kind of hard to read.
As Sherry was replacing my tubes, my mom asked her a question. She said, “I want to ask you a question. I don’t really know you and you’re not my daughter’s usual audiologist. I may never even see you again. So tell me honestly, what do you think of the Clearvation hearing aids? My daughter has been looking into them and saving up for them. We’re told they are super hearing aids, but we were told that about her last pair as well and they didn’t seem to make that much of a difference. We were pretty disappointed. Do you honestly feel that these hearing aids will make a difference?
Sherry didn’t say anything for a couple of minutes. Instead, she held her breath and made a strange face that said it all.
“You don’t need to say anything. Your face says it all”, was my mom’s exact words.
Sherry then began to explain how hearing aids, no matter which one we choose, would not really help me. My hearing was so bad and my clarity was so non-existent, that no hearing aid would really be able to benefit me. Sure, they could amplify sound, but hearing aids don’t really offer clarity. She went on to explain that the only thing that could give me the clarity was a cochlear implant.
My mom and I went on to express the fears we had. The main fear we had was that cochlear implants required brain surgery. We were also told they were only for people with absolutely no hearing. I had around a 95-97% hearing loss, so I was legally deaf and fairly close to being 100% deaf, but I still had SOME hearing and I made it work for me. I thought that disqualified me from being a candidate for a cochlear implant.
“You guys got a lot of research and homework to do”, was Sherry’s response.
That night, the cochlear implant process really began. My mom and I researched and read article after article about what cochlear implants are, who the ideal candidate is, how they work, where to get one, and really everything we could get our hands on. I took a step further and decided I wanted to talk to people who had it done. Researches can say all kinds of great things in their articles, but unless you’ve actually went through and did it, you wouldn’t know what it was really like.
I turned to Facebook and Instagram (hey, I work in the field of social media, where else did you expect me to look?) I found a couple of Facebook groups and Instagram users who had cochlear implants or were considering getting one. I asked many questions and read through many forums. It didn’t take me long to realize that I was considered an “ideal candidate” and that this is something that would greatly benefit my life. I knew it was something I wanted and needed to do, and both my mom and my dad agreed.
My mom got the ball rolling right away. Within a couple of weeks I had my first doctor’s appointment with Dr. Skinhead (okay I have no idea what this doctor’s real name is but I always refer to him as Dr. Skinhead because he shaves every inch of hair from his head and his head is really bald and shiny and therefore he looks like a skinhead….). Dr. Skinhead is an ENT in Woodbury and quite possibly the best around. I saw him once before when my former audiologist accidentally cut a piece of plastic tubing too close to my ear and got it stuck. He removed it. So I knew he was a pretty good guy. Anyway we went there to just talk to him about how I was considering getting a cochlear implant. We had my most recent hearing test sent to him and he looked at my ears. He said he wasn’t quite qualified to give us a definite answer, but he didn’t see any reason why I wouldn’t be a candidate. That was our first yes, and my mom couldn’t have been more excited for me.
Within a week later we had our second doctor’s appointment booked. This one was just with my family doctor, Dr. Millstein. I needed a doctor’s referral before seeing most surgeons for consulting, so that’s what this was all about. He said I was healthy and their was nothing physically wrong with me. He was very concerned that I might get cervical cancer if I don’t get some pretty unnecessary shots….but that’s a whole nother story I don’t wish to further elaborate on. Point is, he said physically he didn’t see anything that would prevent me from getting a cochlear implant and he gave me referrals to see the surgeons.
We were then ready to make one of the biggest steps: meeting with surgeons. My mom did some research and identified two in the area that seemed like great surgeons: Dr.Bigelow at UPenn and Dr. Wilcox at Jefferson. We made an appointment with both of them, Dr. Wilcox being the first. Our first consulting appointment was in October. Two weeks later was our appointment with Dr. Bigelow.
We still had a few weeks before our first consulting appointment, but that didn’t mean we got a break. Not at all. My mom never took a break from my hearing. We still had a few more missions to accomplish before that appointment. Prior to my consulting appointment, I had to have both an MRI and a CT Scan performed to ensure there was nothing wrong with my ears that could prevent me from getting a cochlear implant. My mom scheduled both tests for the same day. The tests were very long and my mom had to leave work early to take me to them, but she did them without complaint. She helped me a lot. I couldn’t hear the doctors at all since I had to take my hearing aids out for the tests, so my mom was very helpful in acting as a translator and helping me to know exactly what I needed to do for these tests.
During my first consulting appointment with Dr. Wilcox, he confirmed what we pretty much already knew: there was nothing structurally wrong with my ears. He said there was no reason I wouldn’t be a candidate for a cochlear implant. He also answered all of our questions. Between my mom and myself we easily had over 30 questions for him and he answered each one very thoroughly. He gave us the green light to move forward — but he said we still had one more step— we needed to meet with one of their audiologists for more testing including a written test and hearing tests.
Scheduling the appointments with the audiologists was easy. It was just a manner of meeting with a receptionist before we left. I had two appointments with them. One test tested how well I hear with my hearing aids and the other without. They really needed to see how much the hearing aids were benefiting me (which proved to pretty much be not at all) and what I’d gain from a cochlear. After just the first test/appointment the audiologist said “Now is definitely the time for you to be considering a cochlear”. Whereas my mom and I would normally be pretty depressed by my hearing test results, that day we celebrated because we knew it was bringing us one step closer to our ultimate goal of getting me my cochlear and me being able to finally hear.
On the last appointment I had to answer some written questions as well. It was kind of like a psychological evaluation. They had to make sure I had realistic expectations and that I would work with my cochlear. I passed that with no problem. They actually said that if anything my expectations were too low. Once this was all complete, it was time to meet with Dr. Wilcox again and schedule the surgery.
We scheduled the surgery within two weeks from the appointment on November 17, 2013. We could not believe how soon it was. It wasn’t even a month from our initial meeting with Dr. Wilcox. Everything with it happened so quickly thanks to my mom being so proactive with it all. None of this ever could have happened without the help from my mom.
The couple of weeks leading up to my surgery were pretty hard, more so for my mom than for me. The things no one tells you about getting a cochlear implant is that it’s a bit overwhelming and terrifying, especially right before you go under the knife. There were many times when my mom broke down in tears because she was so afraid it wouldn’t work, I’d lose the little hearing I did have, and she felt if this did happen she’d be to blame since she encouraged me to go through with it. During these times going to church helped a lot. I remember one time in particular my mom and I visited the chapel at Gloucester County Community Church following their Saturday evening sermon. During this time we prayed with a woman of the church and she said “It will work and there’s a reason God is giving you this gift now and now you have to find out what that is.”
She was right in every way possible. I believe that this is it. I’m supposed to use my new found hearing to help people. That’s why I want to write this blog and turn t his blog into a book — to help other hearing impaired individuals like myself and to encourage them and show them they can do anything they put their minds to.
My mom was very excited but also a nervous wreck during my surgery. I’m a light weight when it comes to any kind of medication, alcohol, or other substance. So the instance they gave me the anesthesia, I was knocked out. Unfortunately, they gave it to me before they had a chance to ask me how to turn my hearing aids off (I had to remove them both for the surgery). So they called my mom to ask her which caused her a bit of panic haha. But other than that she was fine.
She helped me out and showed me a lot of love and support like any great mother should do while I recovered from my surgery. Her and my dad made me special foods (I couldn’t chew for awhile because it put too much pressure on my ear). She helped me get dressed, she helped with my dizziness, and she even helped me manage my hair (for 10 days I wasn’t allowed to wash my hair after my surgery…my mom helped me clean it by getting me dry shampoo, combining around the incision for me, and even using a washcloth to try to clean it up for me). She did far more than what most parents would ever do, that’s for sure.
Activation day was one of the most exciting, yet anxiety-ridden days of the whole process. It wasn’t quite what we expected. I didn’t hear very well the first day. My brain was overwhelmed and had trouble catching up to what I was hearing and processing it correctly. Everything sounded like a baby crying for the most part. Talking with people was pretty challenging and disappointing. I couldn’t hear music or identify the Christmas songs on the radio (I was activated on December 17th). But she never let me know she was disappointed and she never yelled at me or lost her patience. Instead she remained calmed and understood that it was a process. She also celebrated the small victories with me — like my amusement by the sound of light switches and the pouring of liquids into cups.
I was able to hear my mom’s voice better on the 2nd and third day after my activation —- except it still didn’t sound natural. She sounded identical to Minnie Mouse. I couldn’t stop laughing at her. She thought it was kind of funny. She didn’t get mad at all, she continued to support me throughout it all.
Some people who get cochlear implants feel they do not benefit from them or they don’t work. I think that most of these people have gotten it all wrong. They do work — but you have to work with it, too. You can’t be lazy. You need to work with it, especially when you first get activated, on a constant basis. Sure, it might be hard. You might hate what you hear, but it’s never going to get better if you don’t work at it.
My mom worked with me on a constant basis. I really wanted to hear music, but during the first week or two music sounded terrible. My mom helped me by still playing it and buying me a bunch of new music that I was not already familiar with to listen to. She also fed me a lot of words. She had me repeat sentences and words back to her like I’d do for my word recognition tests. She’d even print hundreds of pages of words to go through and highlight the ones I didn’t get right so that she would know which ones to go back to and work with me more on.
When I started to get bored with the words, my mom looked for ways to make it more fun for me. She knew it was important for me to hear these sounds and work with my cochlear. She discovered the Angel Sound program for me which made listening more fun and it also allowed me to train my hear to hear different sounds that went beyond just the words. This has been extremely helpful and beneficial for me.
In all honesty though, the training me to hear and helping me process sounds happened well before my cochlear implant came into the picture. From an early age my mom worked with me excessively. If you’ve ever verbally talked with a deaf person chances are you noticed they have a speech impediment or don’t speak clearly. That’s not the case so much with me. My speech isn’t 100%, but it’s far better than most people who have the same degree of hearing lost as I do. This is because my mom had me placed in speech therapy from the time I was 2. She also always has (and still does) correct me every time I mispronounce a word (which is often…my boyfriend jokes that I can write very well, but still can’t pronounce half the words I write lol). My surgeon, audiologists, and even random strangers compliment me for my speech all the time and tell my mom she is a great mom for all she’s done to help me develop my speech. They couldn’t be more right with that.
I’ve been activated for almost 5 months now, and my mom still continues to work with me with my implant by giving me words, testing me with different sounds, and of course celebrity even the little victories with me. We recently went to a Sidewalk Prophets concert together. It was not my first concert since getting my implant (my first was the Danny Gokey concert I went to with my boyfriend), but it was the first one I went to with my mom. Prior to getting my implant, my mom and I would go to shows together all the time. Some of the bands we’ve seen together include:
- Britney Spears
- Michelle Branch
- Good Charlotte (x2)
- Simple Plan (x2)
- Forever the Sickest Kids (x3)
- No Doubt
- The Ataris
- Katy Perry
- Pat Benatar
- Rick Springfield
- Avril Lavigne
And the list just goes on and on and on. But over the last few years, it’s gotten much harder for me to really distinguish what songs are being played, hear the musicians talking, or understand much of anything at all. This time around I was able to hear EVERYTHING going on. I knew what the guys were saying to the audience. I knew which songs were which. I could hear all of the distinct instruments. My mom was so excited and happy for me that she cried.
None of this would have been possible without my mom. I am 100% certain I never would have gotten my cochlear without the help of my mom. I’m not even sure I would have my college degrees without her because I’m not sure I could’ve gotten into a Public University. Getting into a non-specialized kindergarten class was a challenge enough, but my mom fought tooth and nail to make it happen. My mom wanted nothing more in life than to see me gain the ability to hear, and thanks to her persistence, and the grace of God, it was made possible. Mom, I know you sat here and read every single word (all 3300+ of them…your post was longer than Larry’s by over 1,000 you should feel proud!) because you read all of my posts. I also know you’re more than likely crying (why do I always make everyone cry?) and laughing at the same time at the end of this, but I just need to take this time to say I love and I can never thank you enough for all that you’ve done for me.
When I first got my cochlear implant I was told that it may make it so I don’t have to rely on lip-reading so much, but that I would probably still do it simply out of habit. They weren’t kidding about that.
Many people with cochlear implants do not want to have to lip-read and even become angry or frustrated by lipreading when they have a cochlear. I can kind of understand where they are coming from. They shouldn’t need to rely on lip-reading with a cochlear and also lip-reading can be exhausting! So I understand why people would want to not need it anymore.
I’ve had a very positive experience with my cochlear implant. Part of this positive experience includes not needing to rely on lipreading so much anymore. I can hear in the dark. I can hear when people are behind me. I can hear without having to look at people. These are all things I could never have even dreamed of doing prior to getting my cochlear implant. It certainly makes for a much easier, less exhausting, and more enjoyable life, that’s for sure!
However, some people see my lipreading as a habit that I should break, especially now that I have a cochlear implant. They are right in saying that I lipread out of habit. As my hearing aid audiologist, Sherry would say, “Lipreading has become my crutch because for so long it’s all I had to get me by.” Sure, I don’t need it so much now that I have my cochlear implant, but it’s definitely not a habit I plan on breaking anytime soon. Here’s why:
I wear my cochlear implant for about 90% of the day and 90% of my life. But there are still times when I can’t wear my cochlear. You may recall me discussing my trip to Six Flags Great Adventure. This is the perfect example. You see, I had to take out my cochlear and my hearing aid for most of those rides and I left it with my boyfriend’s mom. I wasn’t able to hear anything during those times. I have profound hearing loss — approximately 95-97% hearing loss in both ears. I still wanted to be able to communicate with my boyfriend during this time though. After all, some of those lines were very long (we waited over 2 hours to ride Kingda Ka…). I can’t hear any sound at all, but I was still able to communicate and have some small conversations with him. I also do not know sign language, so that definitely wasn’t an option. The thing that helped the most was being able to lipread. I was very thankful that day to have not lost this ability.
Having a cochlear implant means not having to lipread even half as much as I used to. This has been nothing short of a blessing for me. But don’t expect me to give up my ability to lipread altogether. There are times when that ability has become a blessing as well!