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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.
Today I watched Heather Artinian’s Georgetown TEDxGeorgetown Talk, “Not the Hearing or Deaf World”. Heather Artinian was the star of the popular documentary Sound and Fury and its sequel, Sound and Fury: 6 Years Later. As the daughter of two Deaf parents, Heather grew up in Deaf culture and was taught to speak with ASL from an early age. Some of her other family members like her cousin were also deaf, however, they supported and got a cochlear implant (or two, not entirely sure to be honest). While Heather supported Deaf culture and was proud of her cultural heritage, she also had many hearing friends and was eager to be a part of the hearing world. At the mere age of 5, Heather knew that she wanted a cochlear implant.
However, her parents were not fully supportive of her decision. Instead of allowing her to get the cochlear implant, the family moved to Maryland which has many more Deaf individuals than her hometown in New York did. They lived there for about 3 or 4 years until her Mom got very sick and had to go back home to New York. During her time in Maryland Heather grew up in a comfortable Deaf environment where she was taught at a Deaf school and ASL was her primary language.
When Heather returned back to New York ASL was no longer the norm and doing the simplest of things like trying to order food from a restaurant was a difficult and frustrating experience for her and her family. Heather wanted to be able to communicate with her hearing friends and to be a part of their world. This is something I can relate to very much. I feel like in many ways Heather’s story is my story. Anyway, as Heather desired to be a part of their world she once again longed for a cochlear implant and this time her family didn’t fight it on it – they allowed her to get her first cochlear implant when she was 9.
Heather has since went bilateral and she is doing very well. She is a graduate of Georgetown University and currently attending Harvard Law school. In her talk Heather focused on bridging the gap between the deaf and hearing worlds and what I loved is that Heather isn’t concerned in being in either the hearing or the deaf world – she wants to be in the Heather world which is a little bit of each world.
Watching Heather’s Ted Talk honestly made me think about my own life and where I am with always having lived in the hearing world and now wanting to learn ASL. People think it’s weird that I never learned ASL and I never belonged to Deaf culture but I didn’t really know about it since everyone I know is from the hearing world so it makes sense that I would want to be a part of that world. Sometimes I feel almost guilty for not belonging to Deaf culture. I’ve had people in a round about way also say that I’ve turned my back on my own culture or I don’t even know who I am or am supposed to be since I’m so out of tune with Deaf culture. Then there’s another part of me that wonders if I’m doing a disservice by wanting to learn ASL. Is this offensive to the Deaf community? I went my entire life trying to fit in to the hearing world and going bilateral and I think being able to hear now is the greatest thing ever and sometimes it’s mind-boggling to comprehend that some people wouldn’t want to hear even if they have the ability to with cochlear implants…and yet here I am after going bilateral wanting to learn ASL and join in the Deaf world. Is this okay or is this cultural appropriation? Have I’ve been missing out on a big portion of my life by not belonging to this culture that I maybe should have been born into? Has my entire life been a mistake for choosing not to belong to this culture? There’s so many questions I don’t have the answers to and may never have the answers to.
Why do I want to learn ASL and why now? Maybe it is because I wonder if maybe I’m missing out on something. Maybe I do want to join in with Deaf culture or maybe I just don’t know yet but I at least want to see what is there. That doesn’t mean that I’m going to go against or abandon the hearing world I worked so hard to get into. It means that whereas Heather wants to live in the Heather world I want to live in the Kimberly world. I want the best of both worlds. I don’t want it to be hearing world and deaf world – I want it to just be 1 world where everyone can co-exist.
I loved Heather’s Ted Talk. I think she is a very smart girl (she’s studying Law at Harvard after all…) and what she says really makes sense. She doesn’t just reject the hearing world the way some Deaf individuals do (I’m looking at you…Mark Drolsbaugh…) she embraces it. Heather wants to make the best future for herself and she knows that in order to do that she needs to learn to adapt to the world around her and the world around her is primarily hearing. However, Heather didn’t forget where she came from. She was never about abandoning Deaf culture. I do get the impression she prefers the hearing world hence why she chose to live with her grandparents, attend a hearing school, and notably didn’t sign during her presentation, but it will always be a part of her and something she is proud of. Heather successfully balances both world to create one universal world that makes her who she is – Heather Artinian. I think we can learn a lot from her and I look forward to hearing more from her in the future.
I was so inspired by Heather that I sent her the following message on LinkedIn:
My name is Kimberly Erskine and I am an adjunct professor and graduate student at Rowan University in Glassboro, NJ. I was born profoundly deaf but always lived in the hearing world and got by with lipreading until receiving cochlear implants in 2015 and 2016.
For my MA project I am writing a memoir about my cochlear implant experience. I have been doing extensive research on Deaf culture and ASL as well. Some of my research involved watching both of your documentaries. I also just finished watching your Georgetown TedX talk tonight. I just wanted to say you are a huge inspiration for me and I believe many other deaf/Deaf individuals as well. I admire the way you chose for yourself which world to belong to – the Heather world – and how you’re working to build bridges in both the hearing and deaf communities.
I don’t think I ever had a choice but to belong to the hearing world. I was offered to learn ASL at a young age but declined because I didn’t know anyone who was Deaf and learning to adapt to the hearing world made more sense to me. I never knew that Deaf culture was its own thing. Once I got older and began to learn more about it it completely fascinated me though. I am trying to learn more about it and hoping to learn sign language (I am applying to take an ASL class as independent study this Fall) so that I can meet more Deaf people and communicate with them.
I can understand how challenging being in both worlds might be for you at times. Sometimes people look at me weird for never having learned ASL or belonging to Deaf culture. They think that means I don’t know who I really am or they don’t understand my sudden interest in Deaf culture now especially since I can hear with my cochlear implants. Maybe in some ways I’m also still trying to figure it all out. I really loved your Ted Talk though because it was so relateable to me. I saw a lot of myself in you and your presentation.
I honestly really hope Heather responds because I think she is really cool and would like to make friends with her haha. We shall see…
This week I read 1 Corinthians 14 and it made me think a lot about the history of American Sign Language actually. In 1 Corinthians 14, Paul is talking to the church of Corinth about speaking in tongues. He acknowledges the ability to speak in tongues as being a spiritual gift from God, however, he strongly urges the church of Corinth not to practice the speaking of tongues unless everyone can do it. Paul explains this by stating, “He that speaketh in an unknown tongue speaketh not unto men, but unto God: for no man understandeth him; howbeit in the spirit he speaketh mysteries.” Men that possess the spiritual gift of speaking in tongues can use it to speak to God, yes, but they shouldn’t use it to speak with the rest of the congregation because they won’t be able to understand him. When we enter the church it should be to honor and glorify God and to help our brothers and sisters and Christ to do the same and to better come to know God and his words. If we can’t even understand what the members of the body of Christ are saying then how can we really come to know God and learn at church, let alone properly worship him in his home?
Paul went so far as to suggest that speaking in tongues could be the equivalent of just making noise without understanding what that noise actually means in verses 7-11. Here he states:
And even things without life giving sound, whether pipe or harp, except they give a distinction in the sounds, how shall it be known what is piped or harped? For if the trumpet give an uncertain sound, who shall prepare himself to the battle? So likewise ye, except ye utter by the tongue words easy to be understood, how shall it be known what is spoken? For ye shall speak into the air. There are, it may be, so many kinds of voices in the world, and none of them is without signification. Therefore if I know not the meaning of the voice, I shall be unto him that speaketh a barbarian, and he that speaketh shall be a barbarian unto me (1751).
Wow, definitely a lot of things going on in these verses! Let’s look at the first part of this first, verses 7-8:
“And even things without life giving sound, whether pipe or harp, except they give a distinction in the sounds, how shall it be known what is piped or harped? For if the trumpet give an uncertain sound, who shall prepare himself to the battle?”
A deaf person may never hear the sounds of a pipe, harp, or trumpet. You could blow that trumpet as hard as humanly possible and that deaf person may never prepare himself to battle if that’s all he has to go on because he’ll never know. To him, the sound of a trumpet is completely meaningless.
For me prior to getting my cochlear implant, I missed out on many sounds. I’ve discovered many of them since getting my cochlear implants, but every day I am also still learning more and more sounds. It’s not uncommon for me to jump a little in class as a train goes by or someone talks or fidgets or I hear an unknown sound. I’m constantly trying to define the source of the sound and what it means. This is what the congregation must’ve been like back in Paul’s time when they tried to understand what the speaker was saying when he spoke in tongues that they did not understand.
I also relate this to ASL. The Deaf community needs ASL so that they can understand what is being said in the church. To them, the verbal communication means nothing. They have no idea what the pastor is preaching without the use of ASL. They will never hear the gospel or understand the message that day. The pastor might as well be speaking in tongues because they’d never know otherwise. Here, Thomas Gallaudet’s arguments for using sign language in the church makes sense.
But hold that thought…
Thomas Gallaudet and the manualists didn’t just think that the use of sign language in the church would help the deaf to better understand sermons; they took it a step further. Gallaudet along with the other manualists felt that sign language would bring the deaf closer to God. In Tracy Morse’s dissertation, “Saving Grace: Religious Rhetoric in the Deaf Community,” she quotes Douglas Baynton’s Forbidden Signs when she says:
For manualists, this view was interpreted in Protestant terms: sign language was an original language and meant “closer to the Creation,” not inferiority (Baynton “Savages” 98). However, for oralists, sign language was associated with lower evolution or “inferior races” (Baynton Forbidden 9). Oralists made arguments that deaf students needed to learn spoken English and lip reading or they would be viewed as animals or savages (Morse 51).
Now, let’s look back to the scripture and focus on verse 11 which states, “Therefore if I know not the meaning of the voice, I shall be unto him that speaketh a barbarian, and he that speaketh shall be a barbarian unto me.
The word “barbarian” here is what stands out the most to me. Do you know who else really loves the word “barbarian”? Alexander Graham Bell who was NOT a manualist like Thomas Gallaudet, but rather an oralist that believed that the deaf needed to move away from sign language and instead learn to speak verbally and read lips and live in the hearing world.
So, what am I saying here? Do I think that this verse is saying sign language is barbaric? Absolutely not, but at the same time, it could be absolutely so. So it’s a yes and a no for me.
Here is what I think that verse is saying, or what the core message Paul has for the church of Corinth is:
We need to speak in a way that people can understand what we are saying in church so as to not cause confusion or anything that can inhibit man’s understanding of the gospel and man’s ability to honor and glorify the lord.
Back in the time of the church of Corinth, speaking in tongues was a barrier for people in the church because it might have benefited the person speaking it, but it did not benefit the church. Paul is calling for the unity of the church – everyone needs to unite as the body as Christ and work in a way that best serves God and not themselves and that involves speaking a universal language they can all understand.
What does this mean for the deaf in the church? Should they be forced to lip-read and practice the oral method? No. I think the deaf should have a right to hear the sermon in a way that is the most accessible to them. Many churches offer the hearing loop to help hard of hearing and deaf people to hear (depending on the degree of hearing loss of course). If a deaf person needs an interpreter, they should have access to it.
If the majority of church attendees are Deaf and rely on sign language, then perhaps that church should consider doing full sermons primarily in ASL, as that is what will benefit that church and help the attendees to learn and honor and glorify God the best.
We don’t have to worry too much about the speaking of tongues in modern day. 1 Corinthians 13:8 says, “Whether there be tongues they shall cease”. People cannot speak in tongues today (I acknowledge that many claim they do – I have my own feelings on that but I’ll be nice and go the route of “no comment” on that…). I think that whereas the church of Corinth had to worry about the speaking in tongues today our issue is more or less about what language or what style/tone to use in church. I think it all depends on the congregation and choosing what is the most accessible to your church goers.
Going back to the discussion on the deaf community…
In Baynton’s Forbidden Signs he explains how many oralists feared that by relying too heavily on sign language the deaf community would isolate themselves from the rest of the world. He stated:
Like their contemporaries in other fields of reform, oralists worried that the lives of people were diminished by being a part of such communities as the deaf community; they would not, it was feared, fully share in the life of the nation. The deaf community, like ethnic communities, narrowed the minds and outlooks of its members. “The individual must be one with race,” one wrote in words reminiscent of many other Progressive reformers “or he is virtually annihilated”; the chief curse of deafness was “apartness from the life of the world,” and it was just this that oralism was designed to remedy. Apartness was the darkness manualists redefined for a new world (Baynton 32).
Sign language was (and still is) very different from spoken English or any spoken language, really It’s different from what the majority is speaking and when people can’t speak our language, either they or we miss out. Isn’t this the same as what was going on in the church of Corinth in a way? Paul wanted to see the church of Corinth come together to honor, serve, and glorify the Lord and to unite as the body of Christ. Speaking in tongues was something very few church members could do that caused a separation or divide between those who could speak and understand it, and those who could not. It became a distraction that kept people from coming to know God.
Is sign language a distraction that keeps the deaf from doing things in their daily lives? It is obvious that it causes a divide from the hearing and the deaf worlds. In the church, it can make things better for the deaf and I can see how it can strengthen their personal relationships with God, but if we only signed and didn’t speak spoken English, the rest of the congregation would suffer. I don’t see sign language as being a form of language that brings a person closer to God in the sense of it’s a superior or holier language than standard English. I think it’s just another language that for some is their primary and therefore the best and for others is just another language in the world that exists but one they don’t partake in or use in their daily lives.
Hey guys! I’m back! I apologize for the lack of updates lately. I have been meaning to make this post for a couple of weeks but I’ve been crazy busy with writing my book, God Granted Me Hearing (which yes, is based on this blog and my cochlear implant experience!) :). Also, I haven’t had a whole lot of news lately. My 2nd cochlear implant has been progressing well. I saw Alyssa at Jefferson around a month ago and everything was good but she didn’t test me again so there’s no update on that end.
I do have something else to share with you all today though — what it’s like to get caught in the rain with a cochlear implant. I’ve written in the past about how getting caught in the rain was one of the things I was most looking forward to doing after getting my cochlear implant and I also wrote about what it was like to go swimming with a cochlear implant, but up until a few weeks ago, I never actually seriously got caught in the rain with a cochlear implant.
First let me say this was completely UNPLANNED. I live in Washington Township and I love to take walks. I knew that a thunder storm was on the horizon, but when I first headed out for the day the skies were still clear. It was one of the first days of spring so for once the weather was warm. I didn’t want to walk to the gym like I normally do because I thought it might be too far of a walk and I wasn’t sure if I’d make it back in time to avoid the storm. Instead I decided to take advantage of the fact that all of the basketball courts at the high school I live across were empty. I’ve always loved to play basketball but I don’t get the opportunity to play nearly as much as I’d like. So I grabbed my bag with a couple of bottles of water, my jump rope (don’t ask…), my basketball, and headed out.
I wore my aqua cases for this trip. I didn’t wear the aqua cases just because of the pending storm, but to protect against sweat as well. I made the mistake when I got my first cochlear implant of going to the gym without the aqua case and almost broke it from all of the sweat and moisture I got in it. Ever since that incident I’ve made a point to wear my aqua cases every time I go to the gym, work out, or even go for a walk or do anything that could produce a sweat. I’d rather be safe than sorry.
It took me awhile to cross the street that afternoon. Traffic was busy in Washington Township, as always. When I finally managed to cross the street and make it to the highs school I took out my jump rope and began using it. I’ve had my jump rope for over a year and never used it before. I heard it was good exercise which is precisely why I bought it, but I always shied away from using it fearing I’d look like an idiot, which I totally did, but it was okay because no one was around to laugh at me. I still didn’t have quite enough magnets in my headpiece on the cochlear for my right ear. I think the placement for that one is different than on my left which makes it not stick as well. When I used my jumprope it kept knocking my headpiece off until finally I gave up on it and took it off and put it in my bag.
I only jumped rope for about 5 minutes or so before switching to basketball. I know it doesn’t sound like a lot, but when you haven’t done it for 20 years, jumping rope is really intense! Plus I noticed the clouds were beginning to look a bit heavy so I wanted to stop and make sure I got plenty of basketball time in before it rained on my parade. I put my cochlear back on for this. It works out better for me than the jump roping did, but it still kept coming off my head whenever I jumped so I ended up taking it off again and putting it in my bag.
I played basketball for about a half hour or so before the rain began. I think this was my first time playing basketball with my cochlear implants. I noticed I was much more relaxed. I didn’t have to worry as much about whether or not any cars were coming by the parking lot or if there were joggers running through or someone trying to talk to me. I was able to hear everything around me (and also there wasn’t many people around anyway). It was very peaceful and fun.
After about a half hour I felt a raindrop hit my head. “Okay, that’s my signal to pack it up”, I said to myself. Within seconds of saying that, I found myself in a torrential downpour. The rain came down at the speed of light. I ran to my bag to check my cochlear and put it back on my head and to check that my phone, which was in my bag, was still working. Everything seemed good. Then I grabbed my bag, my ball, and headed on home.
But I couldn’t simply go home; I had to walk back which meant walking through the torrential downpour and trying to cross the dreaded intersection again. It also meant having to pass a bank and drug store while sporting soaking wet clothes and hair and dribbling a basketball. That’s not something you see everyday…
IT. WAS. FUN. SOOOOO MUCH FUN.
This is something I could never do before with my hearing aids. My hearing aids would have broken in seconds and I would’ve been having a major panic/anxiety account over getting caught in a torrential downpour with them. And my mother would want to kill me for destroying my $3,000+ uninsured devices.
But with my aqua cases on, my cochlear implants were 100% waterproof. I had nothing at all to worry about.
I dribbled my ball through the rain until it began to fill with the water and become too heavy to bounce. Then I carried it. I watched the people flee the bank to their cars as if they were afraid the rain might make them melt. As I waited at the crosswalk by the drug store I noticed the people in their cars looked at me like I was some kind of a freak because I was standing at a crosswalk for a busy intersection with soaking wet hair and clothes, a basketball, and the biggest smile on my face.
I didn’t care about being wet. I didn’t care that my clothes felt like they weighed 1,000 pounds from the rain. I didn’t care about my basketball session being cut short. I didn’t care about the fact that I was getting pretty cold. I didn’t even care about the fact that my contacts were getting blurry from being drenched in rain.
I was ecstatic. I was having one of the best days of my life.
When I got home I didn’t have to worry about anything being broken. I did take my cochlears off and put the aqua case parts and those specific batteries in the dryer just to be on the safe side, but I didn’t really have to. There was no panic attack. I didn’t have to take out the hair dryer to try to air them out and to get them to work or nothing at all.
I simply did what any normal person would do…I changed out of my wet clothes, got a hot bath and made a hot cup of coffee to warm up, and went on with my life.
You don’t realize how much these little things in life like getting caught in the rain can really mean to a person until they get to not just experience them, but ENJOY them without any kind of fear at all, for the first time ever. It’s surreal.
Getting caught in the rain with my cochlear implants may not have been everything I hoped it would be. Larry and I have been broken up for over 6 months now. There’s no one new in my life to give me that Notebook-style kiss in the rain. I didn’t even have anyone there to have a conversation with or to go puddle jumping with.
But you know what? It wasn’t what I wanted it to be because it was BETTER.
It was all my joy for the taking. It was all on me. It was all about me, having my moment. I didn’t need anyone else to be there for me. I just needed that rain and to be off in my own little world.
It was one of the best days of 2016 thus far.
I can’t wait to get caught in the rain again sometime soon.
A few weeks ago I went to a cochlear implant support group. I’ve had some mixed experiences with these support groups. After attending my first one, I vowed I’d never come back. However, I since changed my mind and even had some pretty good experiences since then like the time I went to the cochlear implant support group about hearing preservation (and met the incredibly attractive Dr. Pelosi…but that’s another story ;)).
Since they have been getting better, I decided to make an effort to go to them on a more regular basis. The topic for the January 7, 2016 meeting was on training your implanted ear (or in my case, ears). Med-El was sponsoring the meeting and presenting and discussing their new training cds and books. Since I was just recently implanted with my second cochlear implant, I thought this would be a great meeting for me to attend.
I’ve always been a little skeptical of Med-EL to be completely honest. When it came to choosing a cochlear implant brand I narrowed my choices between Cochlear and Advanced Bionics. Med-EL was the only brand I was sure I DID NOT want because I felt they were too outdated. I always leaned more towards Advanced Bionics. Jefferson didn’t give me a choice so I was glad they chose Advanced Bionics for me, naturally, as it’s what I would’ve chosen anyway.
I had some faith in Med-El for this meeting though. I mean, aren’t all speech therapy training supplies essentially the same? How could you mess that up?
The presentation was given by a woman who worked for Med-El and who I believe was also a licensed audiologist at John Hopkins. She had one of her patients with her who was upgraded to a new processor and/or had a new mapping done that morning. They went through some words and she tried to demonstrate how the cochlear implant is a process and it’s not perfect, he might still mess up. It was a nice presentation, pretty accurate.
She also took some time to go over the new Med-El training book, cds, and online resources. She had a copy of the book. It was very expensive to buy (like $70) but said she’d leave a copy with the group and that we could make copies if we wanted, which my mom and I ultimately did. The book has been incredibly helpful/beneficial for us. That alone made going to this meeting worth it.
Towards the end of the meeting she went back to her earlier point on how cochlear implants help deaf individuals, but it’s not a miracle cure. We’re still deaf. She then used one single word to refer to us all that ruined her entire presentation for me:
She told us we were all handicapped.
I was enraged. We are DEAF but DEAFinitely NOT Handicapped!!!!!!!!!!!!!!!!
I didn’t just let this go, either. I made sure to talk to her at the end of the presentation to let her know I didn’t like that she told us we were handicapped. She apologized and said she knew and that she was really referring to children with multiple disabilities like those who are deaf-blind, deaf and autistic, etc.
It was a nice try, but I didn’t buy it because there wasn’t a single kid there and 90% of the adults lost their hearing later in life. I’m pretty sure none of us had multiple disabilities…it was just her cover.
There are few things in life that infuriate me more than being referred to as being handicapped because I am far from being handicapped. Most of us deaf individuals are always labeled as being handicapped and for most of us that couldn’t be further from the truth.
Deaf individuals like myself face a lot of hardships and much discrimination. We have to fight on a daily basis to have our voices heard and to be viewed as being equal to our hearing counterparts. We get denied employment, entrance into public schools and universities, and most of society tries to exclude us on the grounds that we are “deaf and dumb”.
I am a lot of things in life. I am far from perfect. I have done dumb things in life, but I am not a dumb person and I am far from being handicapped. I have NEVER once allowed my hearing loss to get in the way of my success in life.
I’m really not that much different from a hearing person. I don’t know ASL. I used to lipread (I still do, but I don’t HAVE to anymore). I speak pretty clearly. While I did attend speech therapy as a kid, my speech has never been that bad to begin with. I went to public schools growing up (which my parents and I had to fight very hard for as the school thought I was handicapped when in reality I simply couldn’t hear…). I played on many sports teams and was involved in many clubs. I attended a public university and earned an associate’s degree and later two bachelor’s degrees. Now I am employed for a digital marketing agency as a manager. I have had this job for 2 and a half years. I speak on the phone on a regular basis for work. I have no interpreters or special accommodations. I am really no different from a hearing person.
Society is constantly trying to put a label on deaf individuals and make us feel like we are broken or flawed or not worthy of the same opportunities as hearing individuals. “Handicapped” is far from being an innocent mistake or simply “just a word” used to describe us; it’s become a nice way of telling us that we’re “not worthy”, “not normal”, or “not good enough”.
Deaf individuals fight the stigma and the misinformation and all of these stereotypes on a daily basis. It’s rarely an easy fight. And one thing we absolutely don’t need is audiologists and representatives from cochlear implant and/or hearing aid companies fighting against us and feeding into the stigmas and stereotypes.
These individuals should be fighting alongside of us. They should understand us more than anyone and want to work to show people how the deaf really aren’t that different than the hearing.
Also, as is the case for this woman from Med-El, if you’re trying to sell us cochlear implants, you should speak in a way that gives us hope. Training your cochlear implant and your ear to hear is no easy task, as you’ve seen in my last blog post. It can be frustrating and discouraging. Labeling us as handicapped isn’t going to help matters at all, but it could make things worst. When you call us handicapped you remind us that we’re different, but if we have a cochlear implant it’s most likely because we want to hear and be like those that can hear, at least to an extent. Calling us handicapped can put a damper on all of that because you’re saying we’re different, we’re not able of doing something the hearing can do — we can’t hear. But the goal of the cochlear implant is to gives us what we don’t have that they do have — the ability to hear! Calling us handicapped is basically a nice way of telling us to not work hard and to just give up because we’ll never be like them anyway.
The idea that the deaf are handicapped is a lie. It’s a myth. It’s a diversion of the truth. It is not at all right.
To quote King Jordan, the former president of the famous deaf university, Gallaudet, “The Deaf can do anything but hear.”
We’re deaf, yes, but DEAFinitely NOT handicapped.
Got that, Med-El? Good.
Before I get started on this blog post I just want to acknowledge that this is not going to be a popular post or a topic many people want to hear about. Most people, especially those who do not have cochlear implants, only want to hear about how amazing and life-changing they are. Make no mistakes, getting both of my cochlear implants was the best decision I ever made. I have absolutely no regrets. But at the same time that doesn’t mean this has been a fun and easy process where every single day is all peachy. Sometimes it is really really really hard, frustrating, scary, and overwhelming. Sometimes your cochlear implants can even make you feel quite depressed. That’s exactly what happened to me after my hearing appointment at Jefferson on Thursday.
Thursday’s hearing appointment was my 2nd appointment since going bilateral and my first post-activation appointment. I was going for my 2nd mapping and to have some adjustments made. I told Alyssa, the resident in training audiologist whom I’ve been seeing for a few months now, that I thought I wanted more volume in my new processor, so she had me go through and listen to all of the sounds at varying levels again. She made some adjustments based on my responses. She checked my initial processor for my left ear as well since it’s been I few months since we did it. She actually ended up turning the volume down on that one.
After adjusting the volume Alyssa asked me how I liked my current programs and which new programs I wanted. This was a pretty long process since I am only of the only bilateral patients at Jefferson with the new Q90 processors. Some of their patients have them, but it’s very rare to have 2 of those processors now since they aren’t widely available yet. She had to get the audiologist, Louisa, for help a few times since they haven’t made these programs before. I had her program me with the following programs:
- Everyday w/Auto Ultra Zoom
- Everyday w/Duophone/No Auto Ultra Zoom
- Background Noise
I haven’t had to use the program for the background noise yet since I haven’t been in that loud of an environment yet. I did use the duophone once during a client call on Friday but it didn’t seem all that different to me yet. Maybe because I still need to work more to train my new implant. I will try the Aquacase on Monday when I go to the gym. It will be my first time using 2 Aquacases at the gym so I’m pretty excited to see how it compares to wearing just the 1.
Once we got all of the programs squared away it was time for my least favorite activity: a hearing test. She had me take off my left cochlear implant so we could just focus on my new, right ear.
First Alyssa tested me with just the beeps. I did very well with those. She didn’t write down the percentage and I don’t have my audiogram with me to look at it right now, but I know I scored right around the normal range with that which is great considering I’ve only been activated for a month. It was a good start.
Unfortunately, the test seemed to go downhill from there. After that we moved on to sentences. Alyssa played recordings and I had to repeat them back. I could pick out a couple of the words, but I missed a majority of the sentence. After doing some sentences we moved on to just words where I did even worst.
Being in that extremely small room and not being able to understand what was being said through the speakers gave me such extreme anxiety. It always does, but it’s the worst when you’re unsure of yourself and it heightens when you keep getting the words wrong. The more you miss them, the more anxious you become and then you simply get depressed. Hearing tests can be the absolute worst when you’re deaf or hard of hearing and it’s hard to really describe or have someone relate to that feeling unless they’ve experienced it.
The absolute worst part of the test though was what followed. After going through all of the sentences and words Alyssa instructed me to remove my right cochlear implant (while still keeping the left one off) and she tested me for the beeps again. I got maybe 2 pitches right when they were at EXTREMELY high volumes and that was only because I could feel the vibrations through the headphones. If it weren’t for the vibrations, I would’ve missed those as well.
I have no residual hearing left in my right ear. I knew that was a risk when I got implanted and I was more than willing to take that risk. However, I still expected to retain my residual hearing since I did with my first implant. The hearing I have now is far greater than what my residual hearing was (I only had about 7%, probably a bit less of residual hearing), but it was still hard to hear (no pun intended). Without my cochlear implant in that ear, there’s nothing there.
Alyssa calculated my word recognition to be 34%. She said she was happy with my progress and that I was right where I should be for being activated for only a month. However, all I saw was a 34%, which to me meant failing my test big time (think of it this way — when you’re in school and earn a 34 on your math test you’re probably less than thrilled…). I felt really depressed after that test and spent the rest of the day sulking and feeling sorry for myself.
My cochlear implant is a blessing and having 34% is a HUGE improvement for where I was, make no mistake. My mom and many other people in my life yelled at me for being so miserable and for being so hard on myself. But it’s hard to make someone understand who’s never been through it. Yes, I know I’m right on track and I’m doing well blahblahblah, but it doesn’t always feel that way. It is frustrating to know you’re not hearing the right way. I have the volume in that ear but I don’t understand sounds very well yet. I can’t always make out words or sentences. I’m not on the same level with my left ear yet. I know it takes time, but it is so easy to become impatient.
I also feel a huge sense of pressure and like I have high expectations that need to be met. I myself set the bar high and have high expectations for myself. I know how well I’ve been doing with my left ear and I keep comparing everything to that ear now. When I received my first cochlear implant there was nothing to compare it to so everything felt amazing. It’s hard now that I know what to expect. It’s hard to remember that this is going to take time, especially because I expected things to be so much easier with my 2nd implant (which does not seem to be the case).
There’s also the issue with the people who never received cochlear implants and don’t understand how they work…which is pretty much everyone in my life. Everyone asks me about it constantly and “Can you hear me now” or “Wow, I bet you can hear really great now”, but that’s not always a yes…or at least not yet. Actually without the help of my left ear, a lot of things sound really weird with the right one now. Things still sound robotic. I still can’t understand a lot of spoken words. I might be able to hear you, but I probably don’t understand you as well as I want to. Trying to explain this to people is hard. There’s a lot of people that don’t understand and when you try to explain it they think “Oh, so it’s not working?’ No, that’s not right either. It is working, it just takes time. But it’s hard to explain it to someone who doesn’t understand and it gets depressing because it’s like a reminder that you’re not quite where you want to be with it. And you feel like you’re letting everyone around you down who thought you’d be able to hear and understand everything well right away. And then you feel like you’re letting yourself down, too, because you’re not where you want to be with it, either.
I really wished on Thursday that I had a bilateral (or even just plain deaf/HOH) friend to talk to. I mean I do have some that I met from the support group meetings, but they are all significantly older than me. I wished I had someone my own age, someone with a similar story, to confide in and to lean on for support. Because I think that’s the only kind of person that would have understood why I was upset and exactly what I was going through. I know these people are out there — just haven’t had luck actually meeting any yet lol.
The cochlear implant journey is not easy and it’s not a straight-forward path to success. It’s a rocky mountain climb and sometimes you fall down the mountain and end up in the slumps feeling depressed by the whole thing. But with hard work and practice, you will eventually make it to the top when you are ready.
I spent all of Thursday sulking. Then on Friday night I went back to practicing words with my mom and I got most of them right and I felt a lot better. I’m hoping to squeeze in some time to play with Angel Sound and listen to some sermons with just my one processor on to further help to train it. One thing that I forgot on Thursday that my mom reminded me of was that I didn’t get tested for words on my 2nd mapping with my first cochlear implant — I didn’t do that until 4 months after activated at which point I got a 68%. When you think of it in that light my 34% at the 1 month mark doesn’t sound bad at all. I really shouldn’t have been tested so soon for word recognition. But Alyssa didn’t know better I guess. But it’s only been 1 month and I’m already halfway where I was in 4 months with the first one. I’m not doing as bad as I think.
I’m not about to give up. I’m going to keep working until I end up where I want to be. This is a long process, and it won’t always be easy, but I know it will be more than worth it.