Image Credits: Pinterest
This post has nothing to do with drugs or anything you’d expect from Camden, so sorry to burst your bubble if that’s what you were looking for.
This post does still have a very special story about Camden though. I present to you, the newly revised (and most difficult chapter to write) of my novel, “Follow the Yellow Brick Road”.
Chapter 1: Follow the Yellow Brick Road
Loss. It’s one word with a multitude of feelings attached to it including despair, emptiness, and hopelessness. For some people, loss means nothing. You can’t lose something if you’ve never had it to begin with, right?
That’s how hearing loss worked for me. My mother, on the other hand, can remember the exact moment when she discovered my hearing loss.
I was two years old and my mother would call out my name, but I never responded. The doctors thought it was just a phase or a case of the “terrible twos”.
“No, I know my daughter. She can’t hear me,” Mom would argue.
When my mom banged a handful of pots and pans together behind my back and I didn’t flinch, she knew something was wrong. Defying the doctors, my mom took me to see Miss Terri, an audiologist at Cooper Hospital in Camden, New Jersey.
After performing a series of hearing test, Miss Terri confirmed what we already knew: I had profound hearing loss.
The best way to treat it — or at the time, the only way to treat it — was with hearing aids. I needed them in both ears.
After being diagnosed with profound hearing loss, I made the journey to Camden once every two weeks for speech therapy lessons. My mom and I would drive from our small condo in Washington Township to the big city every other week. On our way in, we’d pass endless food and street vendors selling everything from hot dogs to pretzels and even random t-shirts. It amazed me how at 9 o’clock in the morning people would still be out selling lunch foods. Everyone always had a smile on their face and seemed happy to be working.
“Mom, I want to live here one day. I love the city,” I said on our way in for my appointment.
“That’s because you don’t understand what this city is really like. It’s not safe.,” Mom explained. I’d understand it more when I got older and would see individuals hauled off by police for God knows why on more than one occasion. But as a child, it was a magical place with audiologists and speech therapists that thought the world of me and were helping me to hear and speak well.
Cooper Hospital had many departments and was easy to get lost in. Fortunately, they developed a system to help speech and audiology patients find their way around. By placing strips of yellow tape on the floor, patients could simply “follow the yellow brick road” to their appointment. Every time I had an appointment I knew to look down at the floor for that yellow tape and I’d sing along and skip to the tune of, “Follow, follow, follow follow follow the yellow brick road!”
Since speech and hearing worked so closely together, my appointments were run by both my audiologist, Miss Terri, and my speech therapist, Miss Vicki.
Miss Terri would always start my appointments by testing my hearing. She would lead me into a gray, audiology testing booth that was no more than 50 feet wide while my mom waited and watched outside in the hall. Miss Terri would then crookedly place a special pair of headphones over my ears and hook some wires up to my hearing aids and hand me a button.
“First we’re going to test the beeps. Push the button whenever you hear a beep. We’ll start with your left ear first before moving to the right,” Miss Terri explained.
I’d smile and nod and occasionally give a thumbs up to let her know I understood. I loved pressing that button. It felt like I was playing a video game where hitting the button was the equivalent of shooting the monsters and bad guys and freeing the victims. I never even noticed that the button didn’t get pushed half as often as it should have.
Once that portion of my hearing test was completed, I would be given a series of words that I’d have to say back.
“Say the word hot dog,” Miss Terri said.
“Hot dog,” I answered.
“Say the word baseball.”
“Say the word airplane.”
“Say the word ice cream.”
“Terri, I’m sorry but I have to stop you,” my mom interrupted.
Miss Terri and I both looked up. I was doing so well with the words, what could possibly be wrong?
“She’s not actually hearing you – she’s reading your lips,” my mom said.
“I can fix that,” Terri said as she grabbed the sheet of paper with her word list.
“I’m going to cover my lips now. I want you to focus on what you hear, not on me.” Miss Terri said. I was nervous, but knew I had no choice but to try my best. I nodded in agreement.
“Say the word kite.’
“Say the word chair.”
“Say the word sub.”
“Say the word third.”
“Say the word ran.”
I didn’t know what Miss Terri was saying, I could only guess, but I knew I was wrong. Thanks a lot, Mom. I thought.
When Miss Terri finished with the hearing test, it was on to either Miss Vicki for speech therapy where we would do different activities. One of my favorites involved using what I liked to refer to as the “magic mirror”. It was a long, oval-shaped mirror that rested in a tan wooden frame on wheels.
“Ready to use the magic mirror?” Miss Vicki asked.
“Yes!” I would exclaim.
“Okay. Let’s practice our “Sh” and “Ch” sounds,” they’d say. “We’ll start with ‘sh’ first.”
“Sh!” I said. It was easy for me to think of the sound as a syllable, as if Miss Vicki was the teacher and I the student, getting yelled at for talking.
“Very good!” she said. “Now, I’m going to give you a word. Can you say “choose”?
“Shoes!” I said.
“No, not shoes like on your feet. Choose like when you choose something to eat,” she said.
“Shoes!” I said.
“No, look in the mirror. You want to move your tongue up a little bit and touch your teeth,” she said.
“Tooze,” I said.
“Try again. Remember, you only want to touch your teeth a little bit, not a lot.”
“Choose?” I said.
“Yes, that’s right! Very good! Want to take a break and draw on the magic mirror?” she asked.
I nodded yes and reached for the bucket of magic markers, choosing the pink one first, my favorite color. I drew a big heart on the mirror with several smaller hearts for arms, legs, and even eyes. My little heart person, my favorite thing to draw.
When I finished my masterpiece, Miss Vicki would continue with our lesson.
“Okay, Kimmy. We’re going to play a game now,” Vicki said. I didn’t have the heart to tell her I hated being called “Kimmy”.
“You’re going to take this ball and throw into the trashcan across the room. But as you throw the ball, I’m going to give you a word to say and I want you to imagine your voice going with that ball. As you throw the ball you’ll want your voice to get louder. Got it?” she said.
I nodded. I wasn’t sure if I really understood, but the idea of throwing a playing a game sounded like fun. The game sounded like basketball, a game I’ve always enjoyed watching my dad play.
“Okay. Your first word is suitcase,” she said.
“suit case,” I whispered as I threw the ball.
Vicki threw the ball back to me. “Try again,” She said.“Remember, Mr. Loud Mouth. Your voice travels with the ball.”
I took the ball back from her and paused as I remembered Mr. Loud Mouth. “SUIT CASE,” I said.
“Very nice! You got it!” she said.
Being a toddler with profound hearing loss was easy. Nobody asked any questions about my hearing loss or questioned anything that I did or didn’t do. My parents couldn’t have been more supportive and understanding of my hearing loss. My sister paid no mind to it. And my audiologist and speech therapists couldn’t help me enough. I was a toddler without a care in the world. The only thing that made me different from any other toddler in the world was the fact that I couldn’t hear. As far as I could see, I was one in the same with the rest of the hearing world. Unfortunately, as I’d learn in my grade school years, not everyone saw things that way.
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.
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.
Image Credits: Vimeo
Hey everyone and welcome to my new blog. Some of you may be following me after being redirected from my main blog, www.kimerskine.wordpress.com . I wanted to create a new blog that focuses strictly on my journey into the wild, wonderful world of cochlear implants though. So here we are!
Allow me to introduce myself. My name is Kimberly Erskine. I’m 24 years and currently living in a small township in South Jersey, just around 20 minutes away from Philadelphia. I am profoundly deaf, but living in a hearing world, just as I always have.Here is my (very long) story.
I was diagnosed with hearing loss when I was two years old. Obviously, I don’t remember anything about that (seriously though, who does remember their life when they were 2? lol).My mother tells me that she knew I couldn’t hear because her and my dad would talk to me and I wouldn’t respond. Everyone tried to tell her that I was just going through a phase,but my mom knew better (I have a really awesome mom by the way. You’ll be hearing a lot more about her awesomeness as you read my posts on this blog in the future). So she had me tested, and sure enough I had profound hearing loss.I got my first pair of hearing aids when I was three (my mom has been correcting me saying I was two, but I could swear it was three. Either way, I was very young).
I always lived in a hearing world. My parents always wanted me to live a normal life like other kids. I didn’t have anything wrong with me — I just couldn’t hear. I went to a public school just like “normal kids” do. My mother had to fight diligently for me to be allowed to attend normal classes. I was always very smart (even at a young age I was obsessed with reading!), but because of my hearing impairment the school wanted to place me in special education classes with a special IEP, which I did not want or need. My mother fought continuously and ultimately won. I attended regular classes for all 12 years of my schooling. My schools changed over the years — from West Deptford to Pitman to Woodbury — but I was never once placed in special education or given an IEP plan. I always managed to do the work like “normal” kids do and even took many honors and AP level classes my sophomore-senior years of high school.
My hearing aids and technology have changed a little over the years as I went to school. For the most part I always wore some form of behind-the-ear (BTE) hearing aid. This is due to the fact that my hearing is very bad and this is really the only hearing aid powerful enough for my hearing loss. However, I did try in-the-ear ones once. Never again. They were always in the shop more than in my ears! Turns out it wasn’t so much that they didn’t work — they just simply weren’t powerful enough for my hearing loss. I gave up on those pretty quickly and decided to just stick with my usual BTE’s.
My most recent pair of BTE hearing aids from Miracle Ear
I also had this atrocious thing called the FM Audio Trainer. My teachers had to be given a microphone that went directly to my ears. Whenever I had a substitute or switched classes I had to explain it to my new teacher or give it to them. It got in the way quite a bit too. More annoying than anything. I wore it from around 2-3rd grade before giving up on it. And yes, my classmates did look at me really weird and some of them did make fun of me for it. Thanks, guys.
The tiny wire from my cochlear implant will be nothing compared to these babies…
I was also placed in speech therapy from the time I was about 2 or 3 until like the end of 5th grade. We stopped then because they said it was no longer making a difference. My speech isn’t perfect, but for someone with profound hearing loss it’s quite good. Doctors keep commending me on it. My mom played a large role in my success with my speech as well. Even when I can’t hear how words are suppose to be pronounced (for instance Cherry and Sherry sound exactly the same to me), she corrects me and makes me say the words the right way. My surgeon, Dr. Wilcox, said it’s the best thing my mom ever did for me regarding my hearing loss. (Thanks, Mom!)
I got by pretty comfortably with my hearing aids. I did well in grade school and later went on to complete college. I earned an Associate’s in English from Gloucester County College in 2010 and earned my Bachelor’s in English and a second Bachelor’s in Writing Arts with a concentration in Creative Writing from Rowan University in 2012. This is pretty amazing for someone with my degree of hearing loss. It’s rare for people with hearing this bad to even know how to read or write, and yet here I am, a self-proclaimed book nerd and a writer. Funny how life works out sometimes, isn’t it?
I get by comfortably at work, too. I currently work as an Inbound Marketer, Social Media Marketer, and Freelance Writer for WebiMax, an internet marketing company. My work is very understanding of my hearing loss and it really doesn’t affect my work at all.
But I still live in a hearing world and have the desire to hear like everyone else does. I do not sign. I am an expert lipreader, which helps, but my life in regards to living in a hearing world — it’s a lot of doing the impossible combined with a lot of “just getting by”.
I have always been looking for ways to improve my hearing — but I thought hearing aids was always my only option. I thought that I could just keep upgrading and things would get better. But this too, was just another example of “just getting by” in life.
I was initially saving up for new hearing aids. I have been saving up for about a year. My new hearing aids were going to cost a little over $4,000 — none of which was covered by insurance. I asked friends to help me by making donation to my Go Fund Me fundraiser where I raised $200 and I did a lot of budgeting. My parents were always very weary of these new hearing aids though. $4,000 sure is a lot of money. And also, two years ago we made the decision to upgrade my hearing aids. The hearing aids I have now (Miracle Ear’s ME 31 SP) were said to make a huge difference — but they did not. And I was always very disappointed. I actually remember crying the day I got them because I was so disappointed — I could not hear. I went back a few days later to have them adjusted — but I wouldn’t say I noticed a huge difference — they really weren’t that much better from my last pair — and when you spend over $4,000 for a product — you kinda want it to be amazing. These weren’t. My parents were afraid the same thing would happen again if we went through and purchased another pair of hearing aids.
This is my audiogram from about a year ago. Pretty much beyond the point of fixing with hearing aids alone now. I had another one done a couple of weeks ago during my CI consultation at Jefferson where they said my hearing actually decreased a little bit.
In early September, after rescheduling a hearing appointment and ending up with an all-new audiologist, I learned that my parents were right to be weary. We sat down with the audiologist and asked her if she thought the new hearing aids were really going to make a difference. She was brutally honest. If there’s one thing I learned in the 22 years that I have been seeing audiologists — it’s that it’s rare to find a good audiologist that truly cares about the wellbeing of their patients and isn’t just looking to sell hearing aids. This audiologist was one of those rare kinds. Long story short — she said no, the hearing aid really wouldn’t make that much of a difference. But there’s something that would — cochlear implant surgery.
I wasn’t sure what to think when she first mentioned it. I couldn’t tell if I liked her or hated her. Cochlear implants is something I always knew about — but never knew that much about or perhaps never knew the right things about. They always terrified me. I thought that it was a form of brain surgery and if they messed up I’d lose all of my hearing and be screwed. But that dad God really spoke to me and told me I needed to do my research. And so I did.
I went home that day and looked up cochlear implant surgery online and joined several groups on Facebook. The information was a bit overwhelming and confusing at first, especially the more technical ones that came from medical journals. The thing that really helped me the most was the Facebook groups. I joined two groups that have been incredibly helpful — Cochlear Implant Experiences and Cochlear Implants R Us. I love being able to talk with the members who are currently or have gone through the same exact thing as me and hearing their own personal, real stories. To hear what their challenges have been, their questions, their fears and to be able to relate to them in ways different from how anyone else in my life can relate to me or I to them. These groups have answered a lot of my questions and made it so I wasn’t afraid anymore. Cochlear implant surgery isn’t a very dangerous surgery (it actually has like a 99% success rate and you can usually go home the same day). But it is a life changing one. And this is a change I need to make in my life now.
I’ve had a lot of my tests done already and everything is going well. I met with an ENT who said everything with my ears looked fine and referred me to a surgeon. I met with a family doctor who said I was perfectly healthy and there was nothing that could prevent me from getting surgery. A few weeks ago I met with my surgeon, Dr. Wilcox at Jefferson hospital for a consultation. I was very pleased with him. He answered all of my questions thoroughly and was very confident. I don’t think I have anything at all to worry about.
My mother has been on the phone nonstop in order to get everything done as quickly as possible. Last week the insurance company called to say my insurance for the surgery has been approved. Other than co-pays and fees, I really have nothing to worry about. Isn’t it kind of weird how insurance refuses to cover the cost of hearing aids, yet they will cover cochlear implant surgery? I’m definitely not complaining, it just kind of boggles my mind.
It’s all coming together so quickly and it’s so very exciting. On Thursday I have to get an MRI and CT scan done. I know they will be fine. I’m actually kind of looking forward to it. I think they are fun lol. I know — I’m weird. On November 5th I have my 2nd appointment at Jefferson for testing to see how I’ll do with a Cochlear and to view the models and choose one I believe. I’m about 90% sure I want to go with Advance Bionics (AB). My surgeon seems to be most comfortable and familiar with them as does all of Jefferson and reading about it it sounds really amazing. I’m also very interested in the water proof capabilities. It sounds amazing!
I’m so excited for this journey and I’m very blessed that the lord is giving me the chance to hear like a normal person for the first time in my life. There’s so many little things I can’t wait to do. Things like listen to the radio and actually be able to hear it, watch tv without captions, go to the drive in with my boyfriend (My boyfriend is really amazing and has been very supportive throughout this whole process by the way. He is an awesome awesome man and I love him), hear people in the dark, hear people in the car, hearing people without having to look at them/read their lips, hear in work meetings, and maybe even hear on the phone. I know that I won’t get everything right away. It takes a month for them to activate it after surgery and then you need to train your mind to hear all of the sounds which takes time and practice — but I’m still so so excited. If I could get this done tomorrow I swear I would.
I guess that about covers my long history and my journey into the world of cochlear implants. Stay tuned for more updates regarding this incredible journey that the lord has been so kind to give me!