Hey guys! I’m sorry it took me so long to update this blog. I’ve had a few ideas and have been meaning to post for awhile, but what can I say…life happens.
I spent most of my summer working only one job and not focusing on writing (I probably should’ve focused on it at least a little bit, but I really needed that break!). I wanted to spend as much time with Evan as possible before I had to go back to school. As a result, we grew closer and our love for each other is stronger than ever. He’s such a gem. There’s definitely a few stories about our adventures together in the works – so stay tuned!
What I want to talk about today though is my current cochlear implant book project and the genre I am writing in. As you guys all know I have been working on a memoir about my cochlear implant experience. Writing a memoir has been a no-brainer for me and strongly encouraged by my professors, mentors, and peers. Memoirs are reflective pieces of non-fiction that draw largely on a person’s memories which is exactly what I have been doing with this project – discussing my life before cochlear implants and the memories I have with hearing loss, talking about how my life has and is still changing since being implanted, and reflecting on what it all means.
But am I limited to writing just a memoir, or do I still have other options? That is the question I find myself asking now and I believe the answer may be “No.”
This semester as I finish up the last two classes I need to earn my MA in Writing, I will be working on a special project in my Creative Non-fiction class. I had my first class on Tuesday night where I met with my Professor Joe “Sam” Starkins. I was honest with him and talked to him after class explaining how I already finished my Master’s project (which confused the heck out of him and well honestly it confuses the heck out of the entire department, from what I’ve been hearing) but still want to work on my project since it remains largely unfinished. I explained how it was a memoir about my cochlear implant experience and asked if it would be okay if I continued to work on it and to revise it.
To my surprise, while Professor Starkins did not necessarily say no, he also didn’t exactly say yes. He explained how the class was a workshop and as a workshop would work better if I presented an entirely new project.
“Can I write a book of devotions? I do have an idea for that. I know it’s a kind of weird idea but it’s something I’d really like to explore,” I said.
Surprisingly, he said yes and actually seemed kind of excited about the project.
So, here I am. Initially my idea for the book of devotions was to write using all bible verses that focus on hearing the word of God and listening to what God has to say. Verses like Isaiah 35:5 and Romans 10:17 came to mind.
I took my first stab at the idea of writing a book of devotions when I revised my in-class exercise. The exercise was simply to write a scene in class for 15 minutes without stopping. My memoir came to mind first (I didn’t know at this point in class that I would be discouraged from working on that project) so I had to think back to what parts of my memoir I didn’t already have written and/or what needed the most work. The scene where I met Sherry in Miracle Ear came to mind first, probably because I have been thinking about it a lot lately as it happened almost exactly four years ago to date.
To revise, I had to condense a lot of the scene and focus on only the most important parts and then expand it to at least 500 words. This scene in particular I don’t think quite fit in to the idea I had of focusing the book on verses that relate to hearing God’s word and listening to what he has to say, but it did fit in nicely with trusting the Lord, so I pulled from Proverbs 3:5-6 (my life verse) as the main verse and also referred to Psalm 27:14 and Jeremiah 29:11 for reference.
Whether or not I stick with my initial plan of writing a book of devotions about hearing the word of God and listening to what he says or if this becomes an entirely different book of devotions focused more on hearing loss and my cochlear implant process is to be determined, but I’m super excited about this project and proud of what I’ve done so far. I’d like to share it with all of you, so please see the very first devotion posted below.
I welcome your feedback and critique, but at the same time please keep in mind this is my first time dabbling with this genre. I have read many books of devotions but am still learning what the form/style is (side note – if anyone can recommend a craft book on writing devotions I’m definitely in need of suggestions!) So please read, enjoy, and leave a comment letting me know what you think!
Proverbs 3:5-6: “Trust in the Lord with all thy heart and lean not onto thy own understanding. In all of your ways acknowledge him and he will make straight thy paths.”
“Is there anything else I can help you with today?” Sherry asked as she handed me back my left hearing aid. She had finished cleaning both of my hearing aids and changing the plastic tubing on them. I placed the old, yellowed ear mold inside of my ear and swung the processor around my ear. I smiled, happy to finally be able to hear some sounds, even if it was limited and even if I didn’t always know exactly what those sounds were.
I looked up at Sherry who was sitting on the other side of the table in her office chair so that I could read her lips and make out what she was asking me. “No. I’m good,” I said.
“Actually, if you don’t mind there’s something I’d like to ask your opinion on,” Mom said. I looked at her, puzzled. Every month or so I visited Miracle Ear to have the plastic tubes changed on my hearing aid since they would get moisture in them and harden and shrink, making it difficult to hear. While this was my first time meeting Sherry and attending the Turnersville Miracle Ear location, the appointment itself was nothing out of the ordinary, just the same tried and true routine.
“Sure,” Sherry said.
“We’ve been saving up for these new super powered hearing aids. Kim has been seeing Mindy at the Cherry Hill location and she says they’re supposed to be great. But back when she was seeing Greg at Deptford he said the same thing about the ones she has now and to be honest I never thought they were that great. What’s your opinion on them? They’re very expensive and I guess I’m just wondering, are they worth the money? Will they really help her?”
I let out a sigh and rolled my eyes, hoping my mom didn’t notice my natural reaction. Dad asked Mindy all about the hearing aids at my last appointment and Mindy told us about them and even let me try on the model they had on hand. I felt like I already knew everything there was to know about these hearing aids. They were not only the best option for me at the time, but my only option. Or so, I thought.
I looked back at Sherry as she inhaled deeply and held her breath for awhile before slowly exhaling.
“You don’t have to say a word, your expression says it all,” Mom said.
“I don’t mean to say the hearing aids aren’t good.” Sherry explained, “But what Kim really needs is clarity which no hearing aid, no matter how good, will ever be able to give her.”
“Okay, so then what do we do?” Mom asked as I listened, unsure of what to expect.
“Have you ever considered getting a cochlear implant?” Sherry asked.
Mom and I both looked at each other before saying no and explaining how we were previously led to believe that cochlear implants were a dangerous form of brain surgery that would likely not work anyway.
“Oh no, not at all. You guys need to go home and do your homework then let me know what you think,” Sherry said.
That night Mom and I began our cochlear implant research process. I turned to social media to look for real cochlear implant recipients and what their experiences were while Mom looked for more academic sources and articles. Together we shared notes and our thoughts. We didn’t know what would happen, but we knew that if we put our faith and trust in the Lord he would walk with us and show us the right path to take.
Psalm 27:14; Jeremiah 29:11
Hey guys! Hope all of my East-coast friends are staying warm and dry in this crazy snow storm!
I don’t know if it’s the snow or what, but I received an incredible surge of inspiration and had a major Eureka moment in regards to the opening chapter of my memoir. I thought a better opening would be something more reflective in which I show what is going through my mind moments before I received my first cochlear implant tied in with flashbacks on my life before I was implanted and the time when I was first diagnosed with profound hearing loss (the yellow brick road chapter).
This needs A LOT of work still, obviously, but I’m pretty happy with the first 1,000 which are the new words that I added today. I am also in the process of interviewing my mom for more details with the original yellow brick road chapter. She said she’d need some time to think about many of the questions I had as she tries to remember, but I’m hoping to get some answers from her soon to better flesh out that chapter/add more details.
Regardless, I hope you enjoy the revised opening chapter. Feel free to leave a comment on this post letting me know what you think!
Entering Into a Technicolor World of Hearing
I’m lying in a hospital bed at Jefferson University hospital in Philadelphia. There is an IV inserted in my right arm and Mom is standing to my left. Dad, who has never been a fan of hospitals, is outside in the waiting room. Everything looks like your typical hospital setting except for two things:
- I am not sick or injured.
- I cannot stop smiling.
My journey begins now. Today I will receive my first cochlear implant, and if all goes well with the surgery and recovery, next month I will be activated and Lord-willing, hear, like a normal hearing person, for the first time in my life.
If this works, my black and white and sometimes sepia world will become technicolor and I will not just hear the sounds I’ve always heard, but I will be able to understand what those sounds are and hear them the way they are supposed to sound. Conversations will sound like actual conversations (without me needing to exhaust myself by practicing heavy lipreading). I’ll know when music is playing, and it will sound like actual music. I may even be able to hear what a flute sounds like. I’ll be able to go to the movies without having to awkwardly ask for a pair of caption glasses which A. The ticket salesman won’t understand, or B. won’t work anyway. After the movies, I may be able to go out to dinner with my friends or a date and order my own food without awkwardly staring at another person as if to say, “Please lend me your ears, I can’t hear a thing the waiter is saying.”
If this works, my world will forever change, hopefully for the better.
If this doesn’t work, I risk losing the approximately 7% total residual or natural hearing I have left in my left ear. This residual hearing is currently being amplified by hearing aids.
Amplify [am-pluh-fahy]. Verb. – Increase the volume of (sound).
Notice how it doesn’t say anything about clarity or being able to understand or comprehend what those sounds are. That’s what’s missing. Hearing aids amplify sound, but they don’t give me any clarity. My cochlear implant is supposed to fix that. But if it doesn’t work, I’ll lose my ability to even amplify sounds. I’ll be left with absolutely nothing in my left ear — silence.
I made a list of the things I want to do post-cochlear implant activation, should this work. It looks like this:
THINGS TO DO POST-COCHLEAR IMPLANT ACTIVATION
- Get caught in the rain.
- Experience church in a whole new way.
- Watch movies without captions.
- See a movie at the drive-in.
- Hear a flute, bell, violin, and any other instrument I couldn’t hear before.
- See an orchestra.
- See a play.
- See a ballet.
- Listen to Pink Floyd’s “Dark Side of the Moon” in its entirety.
- Talk on the phone.
- Order food out on my own (restaurant and takeout/Dunkin).
- See a concert (preferably Good Charlotte).
- Hear my cat meow.
- Listen to the radio.
- Hear a cricket chirp.
I didn’t even want to think about what my life would look like if the cochlear implant didn’t work. Would I be forced to learn ASL? Would I join the Deaf community? Could I manage to get by with the remaining, un-implanted ear? Thinking about what would happen if the cochlear implant worked was fun but thinking about the alternatives was terrifying.
I had faith and trust in God that the cochlear implant would work. I prayed constantly and attended church as much as three times in a single day. For the weeks leading up to this day I had both Gloucester County Community Church and Washington Baptist Church praying for and with me and even met with the deacons and deaconesses at both churches.
“God is going to give you an incredible gift. Now it’s your job to figure out how you can use it to serve the Lord,” the deaconess at whose name I cannot recall told me as I met with her in the chapel at GCCC.
I was so excited to begin my new life as a hearing person that as the date of my surgery came closer, sleep became more and more difficult. I’d stay up for 20 or more hours at a time, keeping myself busy by binge watching all 9 seasons of How I Met Your Mother and when I got bored of that, I’d clean everything in sight. I no longer had any concept of time.
“Do you really have to clean your toilet at 3 in the morning? I’m trying to sleep and all I can hear is your toilet flushing,” Mom complained.
“No more cleaning. I don’t wish to smell all of your chemicals first thing in the morning,” Dad pleaded.
Last night, I could hardly sleep at all. The Patriots played the late night 8:15pm game against the Colts.
“Don’t stay up too late, you have a big day tomorrow. You know the Patriots are going to win anyway,” Mom warned.
“Oh, let her stay up. She’s just going to sleep through the surgery anyway. Does it matter if she’s tired?” Dad said.
I stayed up for the whole game and then spent most of the rest of the night in bed, browsing Facebook, Twitter, and Instagram on my phone. By 5:30 AM, I was wide awake, dressed in my brand-new button down fleece pajamas (mom said there was no sense in wearing real clothes, I’d be better off being comfortable and I’d need to wear button downs to avoid pulling shirts over my head post-surgery anyway), and ready, a full two and a half hours before I was scheduled for surgery.
Now the day is finally here. Dr. Wilcox just came in to tell me everything would be okay and to instruct the anesthesia team to begin. I have a plastic mask on my face, covering my mouth and nose. I can hardly keep my eyes open anymore as I feel my body surrender itself to the anesthesia.
When I wake up, I’ll be a cyborg.
In another month, I’ll be activated, and I’ll finally be able to hear, Lord-willing.
If this works, I’ll be able to hear for the first time in my life, or at least, the first time since my mother discovered I was deaf at the mere age of two.
When I was two, Mom would call out my name, but I never responded. When she mentioned it to my pediatrician during my next checkup, the pediatrician thought it was just a phase or a case of the “terrible twos”.
“No, I know my daughter. She can’t hear me,” Mom would argue.
When my mom clapped behind my back and I didn’t flinch, she knew something was wrong. Against my pediatrician’s advice, my mom took me to see Miss Terri, an audiologist at Cooper Hospital in Camden, New Jersey.
After performing a series of hearing test, Miss Terri confirmed what we already knew: I had hearing loss. What we didn’t realize was how severe my hearing loss was. Miss Terri explained that my hearing loss was profound, meaning the only sounds I could hear were those that were at a volume of 90db or higher such as airplanes, helicopters, firetrucks, and possibly a lawn mower. Hearing aids were recommended to amplify these sounds, but my ability to hear and comprehend sounds, even when amplified, would always be a challenge.
After being diagnosed with profound hearing loss, I made the journey to Camden once every two weeks for speech therapy lessons. Mom and I would drive from our small condo in Washington Township to the big city every other week. On our way in, we’d pass endless food and street vendors selling everything from hot dogs to pretzels and even random t-shirts. It amazed me how at 9 o’clock in the morning people would still be out selling lunch foods. Everyone always had a smile on their face and seemed happy to be working.
“Mom, I want to live here one day. I love the city,” I said on our way in for my appointment.
“That’s because you don’t understand what this city is really like. It’s not safe,” Mom explained. I’d understand it more when I got older and would see individuals hauled off by police for God knows why on more than one occasion. But as a child, it was a magical place with audiologists and speech therapists that thought the world of me and were helping me to hear and speak well.
Cooper Hospital had many departments and was easy to get lost in. Fortunately, they developed a system to help speech and audiology patients find their way around. By placing strips of yellow tape on the floor, patients could simply “follow the yellow brick road” to their appointment. Every time I had an appointment I knew to look down at the floor for that yellow tape and I’d sing along and skip to the tune of, “Follow, follow, follow follow follow the yellow brick road!”
Since speech and hearing worked so closely together, my appointments were run by both my audiologist, Miss Terri, and my speech therapist, Miss Vicki.
Miss Terri would always start my appointments by testing my hearing. She would lead me into a gray, audiology testing booth that was no more than 50 feet wide while my mom waited and watched outside in the hall. Miss Terri would then crookedly place a special pair of headphones over my ears and hook some wires up to my hearing aids and hand me a button.
“First we’re going to test the beeps. Push the button whenever you hear a beep. We’ll start with your left ear first before moving to the right,” Miss Terri explained.
I’d smile and nod and occasionally give a thumbs up to let her know I understood. I loved pressing that button. It felt like I was playing a video game where hitting the button was the equivalent of shooting the monsters and bad guys and freeing the victims. I never even noticed that the button didn’t get pushed half as often as it should have.
Once that portion of my hearing test was completed, I would be given a series of words that I’d have to say back.
“Say the word hot dog,” Miss Terri said.
“Hot dog,” I answered.
“Say the word baseball.”
“Say the word airplane.”
“Say the word ice cream.”
“Terri, I’m sorry but I have to stop you,” mom interrupted.
Miss Terri and I both looked up. I was doing so well with the words, what could possibly be wrong?
“She’s not actually hearing you – she’s reading your lips,” said mom.
“I can fix that,” Terri said as she grabbed the sheet of paper with her word list.
“I’m going to cover my lips now. I want you to focus on what you hear, not on me.” Miss Terri said. I was nervous, but knew I had no choice but to try my best. I nodded in agreement.
“Say the word kite.’
“Say the word chair.”
“Say the word sub.”
“Say the word third.”
“Say the word ran.”
I didn’t know what Miss Terri was saying, I could only guess, but I knew I was wrong.
When Miss Terri finished with the hearing test, it was on to either Miss Vicki for speech therapy where we would do different activities. One of my favorites involved using what I liked to refer to as the “magic mirror”. It was a long, oval-shaped mirror that rested in a tan wooden frame on wheels. There was nothing actually magical about it; it was just a regular mirror that I was allowed to draw on with magic markers, but I always loved this activity. I was never allowed to draw on the mirrors at home. I thought that this mirror was special since I could draw on it and the markers would wipe right off when I was done. As a two-year-old, the only logical explanation for how this could work was that it must have been magic.
Before I could draw on the mirror, Miss Vicki put me to work by having me practice my speech.
“Okay. Let’s practice our “Sh” and “Ch” sounds,” she’d say. “We’ll start wi“Sh!” I said. It was easy for me to think of the sound as a syllable, as if Miss Vicki was the teacher and I the student, getting yelled at for talking.
“Very good!” she said. “Now, I’m going to give you a word. Can you say “choose”?
“Shoes!” I said.
“No, not shoes like on your feet. Choose like when you choose something to eat,” she said.
“Shoes!” I said.
“No, look in the mirror. You want to move your tongue up a little bit and touch your teeth,” she said.
“Tooze,” I said.
“Try again. Remember, you only want to touch your teeth a little bit, not a lot.”
“Choose?” I said.
“Yes, that’s right! Very good! Want to take a break and draw on the magic mirror?” she asked.
I nodded yes and reached for the bucket of magic markers, choosing the pink one first, my favorite color. I drew a big heart on the mirror with several smaller hearts for arms, legs, and even eyes. My little heart person, my favorite thing to draw.
When I finished my masterpiece, Miss Vicki would continue with our lesson.
“Okay, Kimmy. We’re going to play a game now,” Vicki said.
“You’re going to take this ball and throw into the trashcan across the room. But as you throw the ball, I’m going to give you a word to say and I want you to imagine your voice going with that ball. As you throw the ball you’ll want your voice to get louder. Got it?” she said.
I nodded. I wasn’t sure if I really understood, but the idea of throwing a playing a game sounded like fun. The game sounded like basketball, a game I’ve always enjoyed watching my dad play.
“Okay. Your first word is suitcase,” she said.
“Suitcase,” I whispered as I threw the ball.
Vicki threw the ball back to me. “Try again,” She said. “Remember, Mr. Loud Mouth. Your voice travels with the ball.”
I took the ball back from her and paused as I remembered Mr. Loud Mouth. “SUIT CASE,” I said.
“Very nice! You got it!” she said.
Being a toddler with profound hearing loss was easy. Nobody asked any questions about my hearing loss or questioned anything that I did or didn’t do. My parents couldn’t have been more supportive and understanding of my hearing loss. My sister paid no mind to it. And my audiologist and speech therapists couldn’t help me enough. I was a toddler without a care in the world. The only thing that made me different from any other toddler in the world was the fact that I couldn’t hear. I was able to live my life in black and white or sometimes sepia. My world was full, but not always beautiful or complete. The older I got the more I realized that living as a deaf girl in a hearing world was a lot like living in a world without color.
This weekend I realized something for the first time.
I will never again use a hearing aid.
I haven’t worn a hearing aid in more than 2 months since I broke the one for my right, unimplanted ear and every backup I had (the battery compartments snapped on them both awhile back, preventing me from closing them and causing them to whistle incessantly). But this realization still felt weird to me.
I have been wearing heads since I was 2, meaning I’ve had hearing aid audiologists since I was 2. It is weird to think I don’t need them anymore.
I’ve gained (and am in the process of gaining) far more with my cochlear implants that I ever had with my cochlear implants. I have my own audiologists for my cochlear implant. Still, I feel kind of bad about the fact that I won’t be seeing Sherri at Miracle Ear anymore.
If it wasn’t for Sherri, I never would’ve gotten my cochlear implant.
Sherri was the one hearing aid audiologist that was different from the rest. Whereas all of the others just wanted to sell me their hearing aids and didn’t really care about what was best for me, Sherri was the exception. Sherri was the only one that was honest and told me that no hearing aids, no matter how good they were, were ever going to give me the clarity I needed. The only thing that could give me that clarity was a cochlear implant.
Sherri told me that cochlear implants weren’t dangerous or anything to be afraid. She told me they weren’t the brain surgery that I thought they were. Sherri encouraged me to do more research and to seriously consider getting one or more.
If it weren’t for her, I never would’ve seen and learned of all of the benefits with cochlear implants and I certainly wouldn’t have ran out to get not only one, but 2.
My days of being a hearing aid patient of Sherri’s are over now. It’s kind of sad in a way. Breaking up with my hearing aid audiologist, Sherri, feels harder than breaking up with my boyfriend was. She doesn’t know yet that I’m getting my second cochlear implant, but I will have to call her soon to let her know. I know that she will be happy and excited for me, but I’m sure she will be sad to lose me as a patient, too.
But this isn’t goodbye, it’s just “I’ll see you later”.
Sherri may be a hearing aid audiologist, but she still does a lot of work with cochlear implants as well. Who knows, maybe I’ll have the opportunity to see one of her presentations or attend an event with her one day.
If there’s anything I learned from all of this it’s that when God closes one door, he opens another.
He’s closing the door to my hearing aid journey and opening up the door to my cochlear implant journey. And what a journey it’s been so far!
Yesterday was quite the day.
I had my evaluation at Jefferson for my second cochlear implant. The day started out pretty well. I was off of work so getting to sleep in a couple extra hours was definitely a perk for one. For two, before I even left for Jefferson, they called me to let me know my insurance was approved.
However, there was a slight catch…
I had to meet the criteria.
I’ll be honest I completely ignored the part about meeting the criteria. After all, Dr. Wilcox did say during my last appointment that it was just a manner of “Crossing our t’s and dotting our i’s”. I knew that I was deaf in my right ear every bit as much as I was in my left ear that I already had implanted. I knew that none of this has changed in the last year. I knew that I didn’t benefit at all from my hearing aid (before I broke it I mean). There’s no reason why I shouldn’t have been a candidate…
However, they left out the part about meeting the criteria being based off of how well you do in the best aided conditions and that for me that would mean how well I do with one cochlear already on…
I had a new audiologist for my appointment since my usual one, Louisa, was on vacation. The audiologist’s name was Paula and she was working with her extern, Alyssa. She was a lot different than Louisa, but seemed nice enough. She said there was no guarantee I’d qualify, but we’d test and see.
I had to do a series of hearing tests that were identical to the ones I did last year for my first cochlear implant evaluation. First they tested me for being able to hear the beep with my cochlear and a hearing aid on (they had a hearing aid for me to borrow). Next they tested me with my cochlear and hearing aid on for sentences without background noise. Then they did it with background noise. The last tests they did were without my cochlear on and for both beeps and sentences.
I did okay on the tests with my cochlear. The cochlear in my left ear certainly helped,but I still didn’t have “perfect” hearing. I noticed that I couldn’t hear from my right ear. Having the cochlear in my left ear helped me with word recognition a bit, but no so much for general sounds especially softer ones and high-frequency.
I got a 73% for the sound and 99% on my word recognition with my cochlear. However, once they took my cochlear off I scored a 0. I am deaf in my right ear. I can’t hear anything at all. Excuse my language, but the direct quote from my audiologist regarding my hearing (or actually lack thereof in my right ear) is that “You can’t hear shit”.
The blue lines show my left ear without my cochlear. The red circles are my right ear. The S’s are where I am with one cochlear implant. What a difference! I can only imagine how great I’ll do with 2 implants if I can get insurance to approve it!
Unfortunately, the FDA says that in order to qualify for this surgery, I have to score a 60% or below in the best aided conditions. Since I score 73% I did too well. That doesn’t mean though that I can’t get the surgery. I had to have Dr. Wilcox and my audiologist, Paula, submit a pre-cert. What this does is explains the test results and why they still believe I would benefit from getting my second cochlear implant and why they recommend it.
They also had me fill out a quality of life survey to submit to the insurance company. This tells the insurance company a little bit of information about how my hearing loss affects my daily life. It asked me about how I perform in social situations, what my dating life was like, how I viewed and felt about myself, etc. I explained how I sometimes skipped social events if I thought it would be too awkward or too loud and I wouldn’t hear well enough. My love life? Yeah my hearing has definitely mad an impact on that. I was in an abusive relationship in the past where my ex would yell at me and make me feel bad for my hearing all the time. My most recent ex was pretty good with my hearing (FYI, that guy I previously wrote about a lot? We just broke up. But that’s another story), but that’s not usually how it works.
Dr. Wilcox went ahead and scheduled my surgery. He said this would force the insurance company to act and make a decision about whether or not they’d cover my surgery. However, we had to schedule it out far in advance (not as soon as last time — last time we scheduled it exactly 1 week after my evaluation!) to give them enough time to make a decision.
So my (tentative) date of surgery is………………………………….
December 14th! If this date remains and insurance is approved I will have my implant just in time for Christmas and will have my stitches out (and be able to wash my hair — thank god lol) the day before Christmas Eve. The receptionists who scheduled it said if insurance approves my surgery before that date we can always move it up though which is what I plan on doing of course.
I also have to go back for pre-testing on December 2nd like I did last time. Exact same procedure.
I didn’t pick out a color for my cochlear or what accessories I want yet, but if it gets approved I will. I’m leaning towards silver. I definitely want a different color from the caribbean blue that I already have. I can never match or be normal of course lol.
I’m feeling a wide range of emotions in regards to my testing. On one side I’m disappointed because I thought for sure I’d be eligible with no questions asked and schedule my surgery right away. But on the other hand I feel blessed to have scored as well as I did on my test. To have 30% hearing is a miracle to me. 73% is something I never imagined I could possibly have. If this is the most I’ll ever have, that alone is a true blessing.
All that I can really do now is just pray and hope for the best. I put it all on God’s hands and trust that he’ll lead me down the right path. It’s as my pastor tells me, the Lord already has the answer and knows what is best for me and he will reveal all of his incredible plans for me over time.
Please continue to keep me in your thoughts and prayers during this time. I do still have a good feeling about it because I know my surgeon is a strong advocate for it. He definitely supports me getting a 2nd cochlear implant and I know that he was making sure to carefully word his pre-cert for the insurance company. Also, my surgeon is a Christian that has called me on a Sunday before my first surgery in the past to pray with me. I know that prayer can make all of the difference in the world right now.
Ever since I got my first cochlear implant I have wanted to get my second ear done. Getting my cochlear implant is the best thing I’ve ever done. Read pretty much any of my past entries on this blog and you’ll see why. It’s given me many new opportunities that I never had before. I can enjoy music like never before, I can call my boyfriend when he’s on the road, I was able to take on a new role at work as a Digital Marketing Manager where I’m making calls to clients on a daily basis, and I can even hear while swimming for the first time ever!
Some people end up going bilateral all at once. This is especially common when it comes to young children. However, more often than not people get one done at a time. This is what my surgeon recommended to me. He recommended waiting at least a year before getting the second one done so that I’d have time to get used to and fully adjust to my first implant and hearing all of the sounds. Well, we are coming up on a year now…
This past weekend I was talking with my mom about my upcoming appointments. I knew I had one with my audiologist, Louisa coming up. I originally thought it was in October, but it turned out it was actually not until December. We still felt like we were missing something something, so we decided to call and find out when my next appointment with my surgeon, Dr. Wilcox was. Turns out, there wasn’t one scheduled. Initially, we made the appointment for the same day as my appointment with Louisa in December, but I ended up moving it up a bit.
My appointment is on Wednesday, September 16th. This is a very important day. It is my grandfather’s birthday, so that right there feels like a positive sign. It is also the one year anniversary of when I first met Dr. Wilcox for my initial consulting appointment where I asked him 244353553 questions about cochlear implants. Wow. What are the chances of that?
My mom did a little research already on my health insurance. When I got my first implant I had Horizon insurance which covered almost the entire cost of the procedure. My work decided to switch health insurance providers a couple of months ago to Aetna. This will actually likely benefit me since it is a new health insurance provider that hasn’t already covered this surgery. Also, my mom found in her research that Aetna is known for being a big supporter of cochlear implants. It sounds very likely that they will cover the cost of me going bilateral.
I have a very good feeling about going bilateral. I really think I’m going to go through with it and it will be successful. I think it will be much easier than my initial surgery was. I know that I am a candidate, so I won’t need most of the testing I had to go through the first time around. I know I definitely won’t need a CT Scan and likely not an MRI either since I can’t get them done with my cochlear. I will probably just need a basic checkup with my doctor and blood work done. Other than that everything should be pretty smooth sailing.
Please keep me in your thoughts and prayers as I begin my journey into going bilateral. Yes, I’ve gained so much with my one implant. Some people ask me, “Why would you want to go through with the surgery and all of that again when you’ve already gained so much with just the one?” Here is my answer: two is better than one.
Imagine if you only had one arm and one hand. Yes, you could get by. Maybe that hand would be phenomenal for you. Maybe you’d catch and be able to hold things better than anyone could ever imagine. But would it still not be better to have two hands?
What if you were blind in one eye and could only see out of the other? Try this now: Close one eye and keep the other open. Try to perform a simple task like typing a sentence on your computer. You might be able to do it and do it well. Maybe you even have 20/20 vision in that one eye. Now, try it again with both eyes open. Chances are, you performed the task much quicker and more successfully.
Two is better than one.
I have been doing great with my one implant, but I can’t even imagine how amazing it will be with a second one.
I still wear a hearing aid in my other ear, but it’s as good as useless. Sometimes I forget to wear it. And when I’m swimming, I go completely without it. I never miss it. I don’t notice much of a difference without it.
However, not having my cochlear is a complete tragedy. I can’t hear a thing. There is practically a 100% difference (definitely 90% or higher) difference with having the cochlear vs. not having it.
God gave us two ears for a reason. Mine might not work the way they are supposed to, but through technology I have been given the chance to correct it and make them like new again. My new, bionic ears.
Why wouldn’t I want to seize that opportunity?
Warning: before you read any further, this blog post might be sickening sweet/cute. You might puke a bit. Don’t say I didn’t warn you.
I’d like to share a glimpse of my love story today. I’ve already spoken many many times about how getting a cochlear implant helped me to strengthen my relationship with my boyfriend. I mentioned how supportive and amazing he’s been. But I want to focus a bit more on the before and after story here and also clear up some common misconceptions about how the deaf/hoh community forms romantic relationships or engages in dating in general.
I had my first real boyfriend when I was 21. Sure, I technically had a boyfriend before then, but I don’t think it really counts (I was only 14…a freshman in high school and we hardly ever saw each other after school — not really “dating” per say). It was the first experience I’ve ever had with serious dating and how my hearing could effect my relationship. It was a terrible relationship. My boyfriend at the time treated me very poorly. If I didn’t like or agree with something he would violently shout at me. My hearing (or lack thereof) only made things a hundred times worst. He had no patience for me at all. If I needed something repeated, especially more than once, he’d get very frustrated at me and scream and make me feel bad. Our relationship ended up getting very verbally abusive, and after spending just 5 months in it I began to not only feel worthless and unloved, but scared. I did the smart thing and left the relationship before he had the chance to hurt me beyond what his words already did to me.
This night made me wish my cat was my date.
I had two more relationships after that. One was very short and ended simply because we were not on the same page. We had a 10 year age gap in between us and had different backgrounds, pasts, and ultimately, futures. Simply put, we were not going anywhere. My hearing didn’t make much of a difference in this relationship either way, most likely because the relationship started and ended all over the course of a month. However, I will say that he was not a bad person and we are still friends. In fact, he’s helped me out a little with my writing career by introducing me to other writers looking to talk to deaf/hoh individuals. Just like how with hearing people some relationships just lack chemistry and don’t work out, the same is true for the deaf/hoh community.
The deaf/hoh community is also not immune to drama, cheating, and heartbreak. In my third relationship, I had all three. My boyfriend at the time always seemed pretty supportive of my hearing impairment. Sometimes he would even share with me news stories about new technology and other articles about cool things happening in the deaf/HOH community. I fell in love with him int he craziest, most twisted love story imaginable. When our relationship was at it’s peak I learned that he wasn’t into it quite as much as I expected. He was actually cheating on me the whole time, and not just that — he was getting married to the girl he cheated on me with!
But just as any hearing person can fall in love, out of love, and in love harder than ever before, so too, can deaf and hoh individuals. And that is precisely what happened when I met my current boyfriend, Larry.
I think that when you meet the right person that you’re supposed to spend the rest of your life with, you just know. That’s how I felt the first time I met Larry on OKCupid back in May of 2014. So I did what any girl would do when she falls hard for a boy and doesn’t know what he’s thinking or feeling — I got scared, freaked out, and ran away (okay, maybe no sane girl would do that…but I never said I was sane, did I?).
They say if it’s love to let it go, if it comes back it’s yours and that’s how you know.
I had to make a couple of mistakes before I could get it right. I think that’s true for most people in relationships whether they be hearing, hard of hearing, or deaf. That was definitely the case for me. But I did come back around, three months later and Larry was there waiting for me. We picked things up right where we left off. The past doesn’t even matter a bit.
This second time around I knew I was lucky. Most guys wouldn’t come back for a girl that has essentially abandoned them and left them in the cold with no explanation three months prior. But Larry’s different. I always knew that. That’s why I loved him. I made sure to hold on so tightly and never let go this time around.
Larry and I tell everyone we took things slow and took our time to develop a friendship before we got together. That’s kind of debatable though now when we both look at it. For me it was taking things slow compared to my last relationships. But we had our first day on September 1st and 12 days later made it official.
This was our first picture together, taken just a couple hours after we officially became boyfriend and girlfriend
One thing that is different for those who are hard of hearing/deaf and those who can hear when it comes to dating is first dates. I think they are always a bit nerve-wrecking for anyone, however even more so when you can’t hear. You not only have to worry about what you’re going to wear and not sounding stupid, but you have to worry about your hearing, too. Normally when I am planning a first date with someone I stress about picking a good place. Movies aren’t good because of course you can’t really talk, getting caption glasses are a bit of a hassle and very awkward especially for a first date, and without caption glasses I can’t hear anything at all. The mall is so much loud noise I couldn’t even hear myself think. Dinner seems pretty safe, but even that called for much stress and anxiety because I always had to choose a place that was almost guaranteed to be quiet — which when you’re planning a date on a Saturday night seems nearly impossible. It definitely can’t be a place with a bar, that’s for sure.
It took me about 3 weeks to figure out what to wear for our first date…this was the result.
With Larry choosing a place wasn’t as hard as it was for most people I’ve dated in the past. I knew I wouldn’t something laid back and fun so we could be comfortable. Chuck E. Cheese was my dream first date place, but I could never convince anyone else that it was a good idea and Larry was no different. So I compromised and chose my second choice place — Nifty Fifties.
I had been to Nifty Fifties for the first time a few weeks prior for my mom’s birthday and did okay with being able to hear. Not 100%, but compared to most restaurants I did okay so I thought I’d be able to get by pretty well.
Larry and I’s first date unexpectedly ended up falling on Labor Day, and it couldn’t have worked out better for us. I guess not many people think of going to Nifty Fifties for Labor Day. We were some of the only people there. It was quiet and I could hear him fairly well, even after lunch when we went outside to play mini golf. My nerves went away pretty quickly and he became my best friend within about 2 minutes of meeting him.
It’s safe to say after that initial date the question wasn’t “Will there be a 2nd date?”, but rather… “When can I see you again?” .
I’d love to say that all of our dates, especially pre-cochlear implant, were as easy as that initial first date. But that most certainly was not the case. As I wrote yesterday, bowling pre-cochlear implant, which is what we chose to do for our 2nd date, was a bit of a challenge. We couldn’t really talk at all and it got a bit frustrating. However, unlike my first ex, Larry never got mad at me for not being able to hear. He always looked for ways to help me and support me. He never once yelled at me, belittled me, or made me feel worthless. He always did what any great boyfriend should do — loved me.
Larry and I have been through a lot in the 11 and a half months that we’ve been together. We seen the strength of our relationship tested time and time again, even before we started dating! Within just a couple of days of us reconnecting, I began seriously considering getting my cochlear implant. From day one he was always very supportive of me saying, “No matter what you choose I’ll support you every step of the way”.
Of course, when you’re in a new relationship and everything is going well you really want to believe that, but you can never really be so sure. People say they are going to do things all the time, but that doesn’t mean they will do them or that they really truly believe that. Take for instance the case with my first ex. He told me he loved me, that he’d always be there for me, and he’d never hurt me. I believe our relationship turned abusive within three months or less of dating. Needless to say, his words were all a bunch of empty lies.
But it was different with Larry. He not only said it, he proved it.
I got scared a lot especially as things started to move forward more and more with my surgery. When I got down to about a week before my surgery I panicked frequently. I would sometimes text Larry in tears asking him things like “Are you sure you’ll still love me if I do this? Do you realize I’ll have a magnet stuck to my head? Will you promise to help me with this?” He always assured me he’d help me through everything — we are Awesome Sauce and Applesauce — and more than that we are teammates — we get through everything together.
Awesome Sauce and Applesauce, forever teammates, forever lovers.
Larry always got so happy and excited for me whenever I had a new update. He was always working when I had my appointments, but he was always the first one to get the news. He wanted me to get my cochlear every bit as much as I did if not more. Larry also always helped me to be confident and more positive. When I would get scared and wonder whether I was making the right decision or if the cochlear would even work Larry always reassured me that it was God’s will and that everything would work out great and he was always right.
After my surgery Larry stayed true to his word and was always by my side. He was on the road throughout the week, but he always texted me whenever he could and visited me on the weekend. The first time he visited me after my surgery he bought me flowers, a card, and a small stuffed animal to cheer me up. I was very self conscious about my appearance since I had part of my head shaved, a ton of stitches, and was unable to watch or comb my hair, but he always told me I looked beautiful…and they weren’t just words — he meant and proved every word of it.
When you look like this and your boyfriend still calls you beautiful, you know you’ve got a keeper.
Healing after my surgery was a process and presented some challenges for us in our relationship. For one I got dizzy and drowsy a lot for the first couple of weeks. I couldn’t stay awake for long periods of time or even really sit up at all. The first couple of times he came over post-surgery our visits were very short because I’d fall asleep straight away or get dizzy. He also had to wait over a month before kissing me. We were both too afraid that I might get hurt if I tried to kiss him, especially since it hurt to move my mouth due to the pressure it put on my ear. But he didn’t complain not once, he understood and stood by and supported me.
Post-activation was and is a whole nother new journey for us. Unlike how most YouTube videos show it, I didn’t just get switched on and have everything perfect — I had to really learn how to hear things. I had my mom working with me on different words and sounds and Larry working with me a bit more on general communication — my phone skills to be more specific. He made me overcome my fear of the phone by calling him on a daily basis. This was essential for us since he is a truck driver and can’t text and drive for obvious reasons.
Larry and I definitely had our share of laughs with my cochlear, too, especially in the beginning. A cochlear implant is a magnet — so like most magnets, it’s going to stick to metal. My boyfriend has a metal truck. My cochlear implant can and does get stuck to it on a regular basis. There’s been many times when at the end of a date we stood outside of his truck, kissed each other good by, went to move and somehow my head ended up getting stuck on his car door. These times were never awkward, but funny. I think that when you can laugh at things like that in a relationship and not get embarrassed or feel awkward, it’s a sign that you’re in the right relationship.
We’ve enjoyed the journey of discovery together as well. Larry can hear anything normally, but he gets a kick out of watching me because he knows that it’s new for me. He’s not selfish in what he can hear, but rather, he wants to share it all with me. When I first got activated it was almost like a game for us. He played me bagpipes, celtic music, native american indian music, let me listen to the sound of coin change falling, and bought me a couple of rubber duckies (which currently live on my desk at work to make me smile during hard days) to listen to because I was so amused by the sound of the squeaking. When he went on vacation he even bought me back a bell as a souvenir because I was so amused by the sound since it was something I could never hear prior to getting my cochlear implant.
These ducks now live on my desk at work and make me smile whenever I look up at them and remember why I have them…
I realized that throughout my cochlear implant journey (which is far from over — in fact, I don’t think this is something that can ever really end in my life, it’s constantly expanding), I not only fell in love with Larry and enjoyed celebrating victories, sharing nerves, anxiety, and all of the roller coaster of emotions it gave me, but Larry fell in love with me, too. The things that would’ve seemed like a hassle or a problem with other people are nothing for Larry. Larry never minds having to help me adjust my cochlear, holding my case for me when I need to take it off for amusement park rides, or just being a source of comfort for me when I need it. He realizes that it’s all a part of his job as my boyfriend, and this is a job that he is very proud of and I don’t think he would want things any other way.
There are some things in life that are universal. We all live, we all die. We all smile, we all bleed. We hurt, and above all, we love. Sure, being deaf/hoh and/or getting a cochlear implant may change many things in your life, but it doesn’t change your ability to fall in love. And it most certainly does not make you love-less or unworthy of love. When you find the right person, they will love your for the person you are, not for your ability (or lack thereof) to hear or even the devices you use to hear. They will love you for you, every single inch of it. And that’s exactly what I found in Larry.