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.
Hey guys! Happy New Year! I hope you all enjoyed your holiday!
I had a pretty enjoyable New Year’s with it being my first New Year’s as a bilateral cyborg! I didn’t have too crazy of plans. I always just stay in with my family and we eat 7 different types of Seafood at midnight as the ball drops and make predictions on the year to come and reflect on the year that passed. I also enjoy a drink. I’m not much of a drinker and don’t like bars, so staying in and just making one drink is more than enough for me.
Last year was my first New Year’s living in the condo in Washington Township, so I knew from last year not to expect much in the way of sound. Our neighbors are pretty quiet and boring; there’s no running out with pots and pains and noise makers at midnight like there was back in Pitman and Woodbury where I used to live. There’s not that much noise to hear on NYE’s at all, so I knew not to get my hopes up too much about hearing different kinds of sounds.
But overall I’ve noticed a huge improvement with my progress with my 2nd cochlear implant over the past week and a half. I moved on to program 2 on Wednesday and it sounded much more comfortable, so I’m gaining sounds with that. I have been practicing words with my mom and playing with Angel Sound diligently. I am almost on level 2 for all programs on Angel Sound now. My biggest struggles have been vowel and consonant (especially consonant) recognition so far, but they are arguably the hardest programs and I still feel like I’m making good progress on them. I feel much more optimistic with it now than I did when I was first activated. I am seeing that this is a progress that takes time.
Pastor’s oldest daughter, Jessica,has been coming to our church with her husband the past few week. Last week she played the flute during service. I have mentioned previously how I wanted to hear a flute with my cochlear, but this is one of the first times I’ve been up close and really able to hear it. I could distinguish it from the other instruments pretty well. It was so beautiful. I was completely mesmerized by it just as I was the first time I heard a violin at church after I was activated with my first implant.
On New Year’s Eve I went to the liquor store to pick up some drinks for the holiday. I went to Hops and Grapes in Glassboro and if there’s one thing I learned about this particular liquor store over the years it’s that you’re almost guaranteed to run into someone you know. First I ran into my childhood best friend, Zach. We were very good friends growing up; he was like a brother to me. This was my first time seeing him in about 10 years so that alone made my night.
Next I ran into someone from one of the cochlear implant support group meetings that I talked to a few times before. My mom spotted him first and said “I just saw another bilateral cyborg! We got to find him and talk to him!” because that is apparently what bilateral cyborgs do. I mean, we’re a rare bunch so when we run into each other it’s like “Hey, sup, bro?” lol. But no, seriously.
As we were looking for him he ran into us and pointed out my cochlears. I didn’t immediately recognize him from the meetings, and I’m unsure if he recognized me, so we kind of both played it off as having not met before. We talked about the progress with our cochlears. He received his 2nd one last March and his is also from Advanced Bionics so he was able to tell me about his experience and he said he had a bit more trouble training his 2nd ear as well but that it’s pretty much there now so that made me feel a lot better. I told him about the Q90 processor and how I like it. He’s due for his upgrade soon, probably in Spring. It was definitely a nice little conversation!
Thinking of the cochlear implant support group…I’ll probably be seeing him again this week! There’s a support group meeting on Thursday. Med-El is going to be talking about their new listening/auditory program which could be a huge help for me training my 2nd implant. I look forward to possibly seeing him again and attending the meeting!
I noticed on New Year’s day I was really starting to make progress as well. The weird thing with my 2nd implant is that I feel like I’m getting music quicker than I did with my first one. Sometimes I think I’m making more progress with music than I am with general words and sounds. However, as a huge music lover, I’m definitely not complaining.
Every year my mom watches at least part of the Mummer’s Parade. One of her relatives (I think her uncle?) used to be a member of the South Philly String Band, so she watches to root for and support them. I always kind of ignore it because I think it’s kind of boring (sorry, mummers!) but I noticed as she had it on this year I could hear the music better than ever. It sounded amazing. I watched Fralinger’s performance and could distinctively pick out the bongos (or whatever kind of drum that was) and the banjos they were playing. It sounded amazing. I don’t think I have ever been able to really hear and understand marching band music like that before. It was so exciting and made me want to hear more band music. I have to get to a Philadelphia Orchestra show after both my cochlears are fully trained — I have a feeling it will blow my mind!
I’m doing much better now with my 2nd cochlear implant and it’s starting to become a very exciting time for me. I go to program 3 on Wednesday and then there’s one more program left after that and then I go back to Jefferson for another mapping. I can see that I am progressing and I know that the best is yet to come.