Tag Archives: cochlear implant activation

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Image Credits: Vox on YouTube

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:

  1. I am not sick or injured.
  2. 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

  1. Get caught in the rain.
  2. Experience church in a whole new way.
  3. Watch movies without captions.
  4. See a movie at the drive-in.
  5. Hear a flute, bell, violin, and any other instrument I couldn’t hear before.
  6. See an orchestra.
  7. See a play.
  8. See a ballet.
  9. Listen to Pink Floyd’s “Dark Side of the Moon” in its entirety.
  10. Talk on the phone.
  11. Order food out on my own (restaurant and takeout/Dunkin).
  12. See a concert (preferably Good Charlotte).
  13. Hear my cat meow.
  14. Listen to the radio.
  15. 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.”

“Baseball.”

“Say the word airplane.”

“Airplane.”

“Say the word ice cream.”

“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.’

“Height.”

“Say the word chair.”

“Stare.”

“Say the word sub.”

“The.”

“Say the word third.”

“The.”

“Say the word ran.”

“Than.”

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.

 

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Image Credits: Anime Next

Hi guys! For those of you who don’t know, I’m in my second year of the MA in Writing program at Rowan University. What this means is I am now taking Seminar I and beginning the bulk of work on my 30,000-word MA project, which of course is my memoir detailing my cochlear implant experience. I already have two drafts of my novel, plus this blog here, under my belt so now comes the fun (or not-so-fun, depending on how you look at it…) part of revising.

I have a general map of the table of contents and the material I want to include in my final novel. The general table of contents at the moment looks much like this:

1. I’m not THAT Special: The Argument Against Special Education
2. Confessions of a Deaf Girl in Corporate World
3. A Life Changing Homework Assignment
4. Everything in God’s Perfect Timing
5. The Last Day as a Def, Deaf Girl
6. The Christmas Song
7. The Most Magical Place on Earth With the Most Magical, Bionic Ears, on Earth.
8. Maybe Two is Better Than One
9. Epilogue: It’s Not Over Yet.

Some of these chapters are going to be arguably easier than other ones to write. I am particularly having trouble with Chapter 1. In my first two drafts I wrote several chapters on my experience growing up in public schools in the hearing world and fighting for my rights to take standard college-level and honors/AP courses as a deaf student. I am realizing now I don’t need ALL of that material, but rather than I should be focusing on maybe just one specific memory, but I’m not sure which memory is worth focusing on. I think this is an area where I really need the help of my second reader, Professor Julia Chang, for advice.

Rather than delaying my progress and work on this project as I consider what to do with Chapter 1 I thought it made more sense to kind of write my third draft out of order by choosing the memories I know I want to write and have a vivid memory of already.

I decided to begin with my favorite post-cochlear implant memory…the trip I took to Smithville with Larry on Day 4 post-cochlear implant activation. Check out the link to my original post for reference, and read the re-write down below. I hope you all like it as much as I did.

Please note: Larry and I have been broken up for two years now and have not said a word to each other since hanging up on each other and calling it quits. We are not on good terms or any terms at all. This lovely memory was just that – a lovely memory that exists only in past and that’s all I’d like to say about that. Everything I said is 100% truth. I write about Larry in order to tell my story and my story only.

Chapter 6: The Christmas Song

On day four of post-cochlear implant activation, all of the little pieces began to click. It was like the newly implanted electrodes and magnets finally learned how their relationship was supposed to work to connect the dots from the sound in my ear drum to the processing unit in my brain. Mom suddenly didn’t sound like Minnie Mouse anymore (okay, well not as much anyway) and some songs were beginning to actually sound like songs, and not just random noise. I knew I still had a long way to go and many new sounds left to discover and learn, but things were finally beginning to sound ALMOST normal, whatever that meant.

I had plans to see Larry for what would be our first date in over a month and I couldn’t have been more excited. Our silent games of cards and Nintendo were nice, but I was itching to get out of my house and to finally have a little alone time with Larry. Plus, I couldn’t help but consider the big question on everyone’s mind – How would Larry’s voice sound to me now that I’d actually be able to hear it?

Larry picked me up at around 6pm in his trusty old, beat up green truck. I was never a big fan of the truck, but for the first time in my life I was thrilled by the sight of that truck because I knew what it meant: I was finally going somewhere. Alone. With Larry. At last.

“I’m here.” read the latest text on my Android phone, but I already knew and had the door wide open before the message even came through. I mapped out his route and knew exactly when to expect him at my condo and watched him pull up. I was excited to see him, but I really couldn’t wait to finally hear him.

He looked so handsome. For once, he actually made an effort and traded in his faded, worn out t-shirts and dirty jeans for a nice collared shirt and a pair of jeans that at least didn’t have any dirt on them (so what if they were a little faded?). The smell of his British Sterling cologne was intoxicating.

“Hi angel!” He said, “Can you hear me?”

I smiled from ear to ear. I could actually hear him without having to ask him to repeat himself for once. I was too excited to speak, so I just smiled and nodded.

“That looks so cool. It’s blue, my favorite color!” he exclaimed.

“Yeah I know. I wanted the red one but they stopped making it so blue was my second choice.” I said.

“So, where do you wanna go?” he asked.

“Did you get the thing I sent you on Facebook?” I asked.

“Which one?” he asked.

“Smithville,” I said.

“Yeah. Did you wanna do that or Longwood Gardens?” he asked.

“I was kinda leaning towards Smithville. Longwood Gardens is expensive and the tickets are timed and if you’re late you’ll miss it and they don’t refund you.” I explained.

“How much is Smithville?” he asked.

“I think it’s free unless you like buy stuff there.” I said, “but it’s not too far is it?”

“Where that at?” he asked.

“Galloway. I think it’s like at the shore but not the shore. Like before you get to the actual shore,” I tried to explain.

“Wait, what?” he asked.

“I don’t drive. I dunno. GPS it!” I said.

Larry pulled out his phone and looked it up. “Okay I remember this. I went with my grandparents and cousins as a kid. It’s not too bad.” he said.

“Where are you guys off to?” My mom said as she came out from her bedroom.

“Smithville” Larry said.

“What’s that?” she asked.

“It’s like this little village or something. Some of my friends went and it sounded cool. I think they have a lot of Christmasy things. I want to hear a lot of noise!” I exclaimed.

“Well okay then,” my mom smiled. “I’ll let you guys get on your way.”

****************************************************

“Your voice is beautiful,” I said. I wasn’t sure if I meant it or if I was just saying it because of how in love I was and how happy I was to finally be able to hear him speak and to have a conversation that existed outside of writing down notes or texting each other. It’s been a rough month as far as communication went.

“Thank you,” Larry said, as we both laughed together.

“This is weird. I know. But I can hear now.” I said.

“What do I sound like?” he asked.

“Pretty much the same.” I said, “But your voice is a little deeper.”

“I got a Spotify playlist,” Larry said. “Do you want to hook it up?”

“Sure,” I said. “What do you got on here?”

“Take a look.” he said as he handed me his phone and pulled out of the parking lot.

I scrolled down the list searching frantically for a familiar song. Celtic music. Scottish music. What in the world? Only my boyfriend would have music this weird on Spotify…I thought.

Finally, I found something I recognized: “As Long As You Love Me” by the Backstreet Boys. Everyone told me that music was the hardest sound to learn after activation. Some people couldn’t ever learn it, but I was determined. Music still sounded terrible to me, but better than it did on day one at least. If I could find a song I was familiar with it didn’t sound too bad because I could use my memory to remember how it SHOULD sound and almost pretend that what I should have been hearing was what I was actually hearing. It’s like I was playing a game with my mind. Fake it until you make it, right? I just wanted to impress Larry with all of the things I could suddenly hear, even if I couldn’t understand them.

Larry knew that I love the Backstreet Boys. We sang “I Want It That Way” together on our first date at Nifty Fifties, but did he realize I’ve been listening to “As Long As Your Love Me” practically on repeat since I discovered it nearly twenty years ago? Did I even care? I began to sing along to the radio, “I don’t care who you are…where you’re from…what you did….as long as you love me…”

Larry joined me and we sang together in harmony, “Who you are…where you’re from…don’t care what you did…as long as you love me…” and it felt like he was singing directly to me, serenading me with his love. Larry’s always sung to me, but now that I could hear him and almost understand him, his voice sounded ten times sweeter.

When we arrived in Smithville I was immediately reminded of one of our first dates when we went to Wheaton Village. This was another cute, small village with mom and pop shops and crafts all over the place. Except there was SO much noise and it looked like Santa came through town and painted everything with Christmas cheer. There were lights everywhere I looked, a train going by every 10 minutes, and Christmas music constantly playing.

 

“Look at the lights!” I said.

“It’s a Christmas lights show,” Larry explained after reading the sign. “Want to watch?”

“Sure!” I said.

We watched as the Christmas trees lite up and flashed new colors every few seconds. Some were purple, others were blue or orange.

“Can you hear that?” Larry asked.

“Christmas music?” I guessed. It was an obvious answer; we were in Christmas town, after all.

“Yes.” he said.

“I can’t tell what song it is.” I admited, “But I know it’s Christmas music.

“It’s Rudolph.” He said as he began to hum the tune.

I nodded along, wondering if there were any songs I’d “get” that night. I haven’t really been able to understand any of the songs on the radio since we’ve arrived, but I was enjoying the sensation of hearing sounds and being able to at least tell there was some kind of music playing.

“Do you want to go in the shops?” I asked. The lights were cool, but I was ready to explore everything else.

“Ok. That one looks cool,” he said as he pointed to a native American shop. Larry has always been interested in Indians, just like me.

We entered the shop and looked around. “I always thought Native American art was beautiful.” I said as we admire the crafts. Larry walked by the hat rack and tried on a feathered headdress.

“Beautiful.” I said and we both laughed. He began to take it off. “No! I need a picture of it first.” I said.

“Okay, but no Facebook!” he says.

“You don’t know me very well,” I said. “Your grandmother will love this!”

We walk further in the back of the shop and Larry discovered an old-fashioned rack of CDs with a little machine that allowed you to play samples of the music. He read from the choices and pushed one of the buttons. “Indian music,” he said.  “Can you hear it?”

“I can.” I said. There weren’t any words, so it was easier to follow along.

“What do you hear?” he asked.

“Drums?” I guessed.

“Yes. What else?” he asked.

“Uhm. I want to say guitar?” I guessed.

“Mmhmm.” He said.

“I know there’s other stuff, too, but I am not sure what else it is.” I admitted. “I want to hear a flute.” I say.

“I don’t think we’re going to find that in Indian music.” he admitted, almost apologetically.

“It’s okay.” I said as I push another button.

Larry and I pushed every single button until we run out of songs. “The people in here must hate us.” I said, “Oh well I’m having fun.”

“That’s all that matters then.” Larry said.  “Love you.”

“Love you too.” I said. “Let’s go somewhere else.”

We made our way from shop to shop. Most of the shops were filled with homemade goods that we had no intention of ever buying, but it was fun to look at them all anyway.

“Check this out.” Larry said as he picked up a bell. “Can you hear it?”

I listened carefully, it’s a sound I’ve always wanted to hear but never could. “I can. Oh my god. I can.” I said. “Let me see it.”

I picked up the bell and held it to my ear, ringing it over and over again. Tears began to fill in my eyes. I can’t believe that I was really able to hear a bell. I may not have been able to hear everything clearly yet, but this was huge. I’ve never been able to hear high frequency sounds before and now I was clearly hearing one of the highest forms of high frequency sounds.

“There’s some more over here.” Larry said.

I walked over to the table where Larry was and carefully pick up each and every bell and rang it to my ear. They all sounded the same, but I had to ring them all just to be sure. I picked them up and placed them down carefully, being cautious not to break any of the glass or porcelain materials. The shop owner glared at me. Surely, she didn’t understand or appreciate this little routine.

“Let’s go somewhere I else,” I whispered to Larry. “I don’t think she likes us doing this.” I said as I glanced up at the shop owner.

“Great idea.” he said.

Our next stop was a little punk rock shop known simply as “Underground”. Underground didn’t look like any of the other shops we’ve been too. The outside of the building was green like all the other shops, but the bright red doors made it stand out. There were no handmade goods or bells or frilly things. Everything almost looked like it was dead and there was hundreds of thousands of old records everywhere you look and walls adorned with famous concert posters from heavy metal bands.

“I feel like I’m home!” I yelled over the heavy metal music blaring through the speakers.

“What? I CANNOT HEAR YOU!” Larry yelled back. He looked horrified.

“I LOVE THIS PLACE. IT REMINDS ME OF THAT RECORD STORE IN OCEAN CITY!” I said. I was pretty sure this was what heaven looked like, or at the very least, sounded like.

“I can’t do this – I’ll wait for you outside,” Larry said. I was afraid I may have broken my country boyfriend, but I’m in no hurry to leave. I was in my element, whether he chose to be a part of that or not. I nodded back and said, “I’ll just be a few minutes.”

I browsed through the stacks of records, but I didn’t recognize any of the names. This really is underground, I thought to myself. I reminiscenced on my middle school days back when I’d spend hours searching for local punk rock bands that no one has ever heard of, dedicating my life to being their little groupie, whether they wanted it or not (most of them didn’t). I focused on the songs blaring from the radio. I could feel all of the vibrations and could understand why Larry had to leave…it was LOUD! I had no idea what they were shouting through those speakers, but I didn’t mind. I was in pure bliss simply by the fact that I knew there was music playing, a feeling I hadn’t experienced in several years. Besides, wasn’t the point of heavy metal music to shout things in a mic and pair it with heavy drumming and guitars so no one knew what you were saying any way? “It’s screaming music. It’s not even music, they just scream,” my dad would always say. Like Larry, Dad never quite “got” the concept of heavy metal either.

I spent a few more minutes soaking in the entire experience and all of the sounds before spotting and purchasing an Edgar Allan Poe shirt. It wa a nod to my Bachelor’s degree in English, but also a little memento to help me to forever remember this moment.

“We better get going,” I said to Larry when I reunited with him outside of the shop. “It’s getting late and we still need to stop for dinner.”

“Okay, where to?” he asked.

“Up to you,” I said.

“How about Applebees?” he suggested. I never liked Applebees in the past because it was always too loud for me, but with my new bionic ears, I’m more than willing to give them another chance tonight.

“Sounds good.” I said as we walked back to his trusty green truck.

It’s a long way from Galloway to Deptford. I was sure there must have been another Applebees in a closer town to us, but Deptford was all that either of us knew, and we didn’t mind spending some extra time together. It was our first night out in over a month, and with Larry on the road all the time as a truck driver, we knew that opportunities like tonight would be rare and far between in the months to come.

“I have something for you to listen to,” Larry said.

“Hm. What’s that?” I asked.

“Listen.” he said as he pushed play on a Spotify playlist on his phone.

I listened closely for a few seconds before realizing there were no words to the song.

“Instrumental?” I asked.

“Yes.” Larry admitted.

“Drums?” I questioned. I was confident that whatever I was hearing must be drums.

“What? No.” he said.

“I could swear I heard drums.” I said. I knew I was learning sounds, especially for instruments, but I didn’t trust Larry’s words at that moment. A drum was a drum was a drum. This was not a high frequency sound. I knew what a drum was. Or did I?

“Nope. It’s 100% bagpipes.” He said.

“Oh wow. That’s different.” I said. I was impressed that he remembered my love for bagpipes. I WAS Scottish and Irish after all. Bagpipes were what we did.

“Yeah, thought you’d appreciate it. I know you said you wanted them at your wedding when we get married.” He said.

“Yes I do. I always thought they were cool.” I admitted, “they sound beautiful but I could swear I heard drums. It’s weird.”

When we arrived at Applebees, we were quickly seated and a waitress asked us what we wanted to drink. For the first time since we’d started dating, I was able to answer, “Water, please.” without having to look at Larry for clarification. For the first time in years, I didn’t need someone to translate or repeat what the waiter asked because I was able to hear for myself.

The waitress took both of our orders and ran back into the kitchen. “I can hear!” I exclaimed. “I could actually hear the waitress and I can hear you and the TV and I can separate all of the noise and tell what is what.”

“You’re doing amazing,” he said. “I’m impressed.”

The waitress brought out our food and we continued to talk as I glanced up at the football games playing on the TV every couple of minutes and Larry played his Transport Empire game. Usually I yelled at him for playing his game throughout dinner, but tonight I didn’t mind. His stupid game made so much noise, but I never noticed it before. Tonight was the kind of night where even the most annoying sounds were a blessing, because it was all so new and I couldn’t believe not only what I was hearing, but the fact that I was hearing at all.

When we left Applebees and finally arrived back home, it was after 10. This may have seemed late for some people, but not for us. For us our first night together in a world of sound could have gone on forever, and we were in no hurry to watch it end.

Larry parked the car in the back lot, away from all of the houses and other cars so as to not disturb my elderly neighbors who may have been trying to sleep. “Let’s not go inside,” I said.

“Why? Mom asleep?” he asked.

“No…” I admitted. “I just want to talk.”

“About what?” he asked.

“I dunno. Can you sing to me?” I asked.

Larry knew exactly what I was asking for. I was asking for more noise. More sound. More of him and his voice and to experience him in a way that was still foreign to me. I wanted to learn what music REALLY sounded like. I wanted to learn his voice. I wanted this night with just the two of us to last forever.

He put his Spotify playlist on and we listened to each and every song. He moved our seats back so we could cuddle. I rested my head against his chest and felt his heartbeat as he sung along to the radio, holding me as tight as he could. He only stops singing every few minutes to kiss me above my eyes.

When the last song played, it was Brad Paisely’s “She’s Everything” and I could swear he was singing each and every line from the bottom of his heart directly to me.

“She’s a warm conversation that I wouldn’t miss for nothing…She’s a fighter when she’s mad and she’s a lover when she’s loving… And she’s everything I ever wanted and everything I need… I talk about her, I go on and on and on, ‘Cause she’s everything to me…” he sang and I felt exactly like I must have been the girl that Brad Paisley wrote his song about.

“Love you, Angel,” Larry whispered in my ear.

We fell asleep that night in his trusty, beat up green truck under a full night of stars to the sounds of Braid Paisley. Our own version of a Christmas song.

 

 

 


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My new silver cochlear implant!

It’s been 3 days now since I’ve had my second cochlear implant activated. Although I knew what to expect this time around,that doesn’t change the fact that it’s been a bit of an overwhelming and nerve-wracking experience nonetheless.

Activation date was on Wednesday, December 23rd…the day before Christmas Eve. I had Alyssa, the girl who is doing her residency (there were other audiologists around if we needed them…she’s not licensed but we specifically requested her since she’s been so excellent…we really like her) activate me. I couldn’t sleep prior to my appointment because I was way too excited. Getting to Philly was a bit of a challenge since it was raining and incredibly foggy. We couldn’t take the train like we usually do. My mom and I had my dad drive us into Philly. Traffic was bad since it was right before the holiday. We ended up being over a half hour late, but fortunately Alyssa didn’t mind. I don’t think they had many appointments being so close to Christmas…

My appointment was supposed to be at 9:30, but we didn’t get there until after 10. It was a fairly quick appointment. I believe she just used the same settings as were on my first cochlear implant. She played a couple beeps first and had a chart for me to choose whether the beeps sounds too soft, soft but comfortable, comfortable, or too loud. This process took about 10 minutes or so. I found that most of them were in the comfortable but soft or just comfortable range.

Listening to the beeps!

Once we finished with the beeps we moved on to basic sounds, expressions, and words. My mom asked me if I could hear her and if she sounded like Mickey Mouse so I laughed and said “Yes”. Her voice was very squeaky, just as it was with my initial cochlear implant, but it began to normalize quickly. Alyssa’s always sounded pretty normal for some reason. I guess her voice isn’t quite as high as my mom’s is or something.

I didn’t do too  bad with the basic sounds like “oooo” and “mmmm” and “eeee”. Some of the words I struggled with especially colors like “purple” and “orange”. Those two were the hardest for me. It will take some time to adjust to and for sounds to be normal. My own voice echoed back a lot and sounded weird, but not quite as weird as it did with my first implant. I am unsure if I like the volume or not. Everything sounds so robotic and strange now that it is hard to tell.

My mom sounded like Minnie Mouse at first…how could I not laugh?

I have the new Q90 processor, so that alone may take some getting used to. While it’s similar to the old Q70 I initially started with, it still has some differences that take some getting used to such as automatic programming. However, this one is a bit different than the one on my left ear. I am back to having 4 programs and switching to a new one each week as my mind begins to learn and process the sounds. The Aquacase is not yet programmed. Alyssa said I need to get used to the other sounds first so it’s not too overwhelming.

Alyssa recommended that I wear my new cochlear for my right ear as much as possible so that I can train it. I wasn’t home very much on the first day. After my appointment I went to the Amish market, grocery shopping at multiple stores, to my hairdresser’s for a haircut, out for dinner, and walmart, so I wore both cochlears out most of the day. However, whenever I was home I took the old cochlear off. Everything sounded a little more clear on the first day then my first cochlear did, but still pretty robotic and strange. My mom’s voice was less squeaky, but my dad’s sounded pretty robotic. Most things aren’t clear, they just kind of sound like distorted noise. Music sounds absolutely terrible, as can be expected. However, if it’s a song that I’m really familiar with it’s not too bad. I listened to some old-school Kelly Clarkson and it was tolerable since I was so familiar with the song.

I spent much more time at home on Christmas Eve and Christmas. Now that I’m single, I don’t have to worry about going to a lot of different people’s homes. My family and I always did Christmas together especially since my grandparents passed; we aren’t at all close with any members of our extended family. So I spent most of Christmas Eve and Christmas with just the new cochlear on except for when I went to church. Everything still sounds pretty weird. I can only watch TV wish captions. I can’t understand people talking much unless I read their lips. I can’t distinguish where sounds are coming from or what they are.

I notice a big difference when I wear them together though. My left ear with my old cochlear implant is by far my dominant ear right now and almost completely overpowers my newly implanted right ear when I have both of my cochlears on. Things are definitely much louder and a bit more clear. Music sounded better at church, and I was once again especially mesmerized by the sound of the violin. High-pitch songs that I previously struggled to really hear like  Silent Night sound better. I also noticed I mispronounce a ton of words because I never really heard the proper way to say them…

I am a little unsure of the progress I am making in general with my new cochlear implant. I feel like with my first one I noticed a huge difference on the second and third days, but I am not sure I see that with my new cochlear implant. I’m on day 3 and everything still sounds totally weird, robotic, and distorted. Unless I have my initial cochlear implant on, I can’t really understand anyone speaking or any sounds. My mom stood behind me and clapped and I didn’t really hear it; I kind of ignored it because I thought it was just my dad making noise in the kitchen…

I spent at least 2 hours today working to train my ear. My mom sat down with me and did a word list. I got most of the words wrong, even when I read her lips. I am hearing some parts of the words. Like I can pick out that there’s a strong P sound or a un in in the word somewhere, but I can’t usually get the full word yet especially if I’m not lipreading.

I also used the Angel Sound program to train my ear today. I spent most of my time on Pure Tone Discrimination and worked my way up to level 2. I also worked a little bit on Environmental Sounds and am almost but not quite ready for Level 2 of that as well.

I tried switching from Program 1 to Program 2 today wondering if that would make things better, but ended up switching back to program 1 as I felt like I was getting too much power/sounds in program 2. I’m not sure I am quite ready for that.

I’m unsure how well I’m doing. I feel like the progress was easier and quicker with the first cochlear and that scares me. I feel like I’m failing at this, but even if this is all I get with the first one, it’s still an improvement, right?

Maybe it’s all in my head. It’s easy to look at my first cochlear and see it as all a success, but I didn’t get there overnight. It took me months to gain the ability to hear on the phone and music sounded terrible then, too. But then I think back about Larry and I’s date to Smithville last year. We did that on my 4th day of being activated and I did so well. I could hear him in the car, I could hear music playing (although I couldn’t tell what it was), rubber ducks squeaking, and hold a conversation at Applebees. I had a hearing aid in my other ear, but that didn’t give me clarity or do much of anything. If I take my left cochlear off, my right ear can’t do these things yet. Tomorrow will be day 4. I feel like I’m behind where I was last year, but shouldn’t this be easier?

I know that this is a process and will take time, but I’m still really scared. My anxiety is at an all-time high.I am just waiting for my breakthrough and hoping that it comes soon. I’ve struggled to sleep because I want to be awake to train my ear and see if things get better and I can’t help  but worry, What if this never gets better? I know I have a tendency to be an impatient person and this takes a great deal of patience. I also know I need to pray to and trust God more. He’s already given me amazing gifts with my first cochlear implant, and he will with my second one, too, if I just learn to be patient.

This training my ear to hear thing with my 2nd cochlear implant may be proving to be a bit more of a challenge than I expected. It may not be all of the happiness I was hoping it would be at the moment, but it will get better in time. One thing I know for sure is this: I refuse to give up. I will continue to work on training my brain to hear the sounds until they are better than I ever could have imagined. God has given me the gift, now it’s my turn to work to use it as he intended me to do.


Today has been quite the day! I took off of work today (although I did check in, answer emails, and comment on tasks as much as possible), but the day has been just as busy if not more so than my usual work days.

At Around 10am, I left for the train station and then took the train into Philly. My first appointment was at Jefferson with Alyssa, an audiology student who was filling in for Louisa. I had met Alyssa once before during my last appointment when I had my 2nd cochlear implant evaluation and really liked her. She is not yet an audiologist as she is still in school, but she said she should be an audiologist in May and she still fills in and helps both Louisa and Paula out.

I was just meeting with Alyssa today to choose a color for my 2nd cochlear implant and to go over the options for the accessories and the package. It was a super quick appointment. I was originally trying to decide between the ruby red and the silver. After seeing it though I was pretty lukewarm to the red; it just looked too dark. I decided to go with the silver. It was pretty easy for me choosing the accessories. I didn’t want the palm pilot thing since I didn’t think it was worth it for me. I hear pretty well on the phone without having to use that tool to stream to both of my cochlears. It made more sense for me to opt for getting more batteries instead so I chose extra batteries with  more of the small ones since at the moment I have more large than small. I also choose to get the Aquacase and I ordered it to be in a navy blue called Petrol with a white headpiece and cable.

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I choose the Silver/Gray one for my 2nd implant and the Petrol one for the headpiece on my 2nd Aquacase.

Image Credits: Advanced Bionics

I asked Alyssa which processor they will be giving me. The Naida Q90 isn’t available for public distribution yet, but I’m eligible to upgrade my Naida Q70 for it for my first implant, so there’s a chance they’ll be giving it to me for my second one as well. Alyssa will call and find out.

I also set up my activation appointment. I had a little bit of trouble scheduling it since both Louisa and Paula will be out for the holidays for awhile but I ended up scheduling it for…………..

DECEMBER 24TH! Yes, Christmas Eve! What an amazing Christmas gift it will be!

After my appointment with Alyssa I went over to Starbucks since I had about an hour of time left to kill. I was happy they had my seasonal favorite — Peppermint Mocha. I ordered it as a Venti Iced Frappachino. :).

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Is there anything better than a Starbucks Peppermint Mocha Frappachino? No, there is not.

Image Credits: Global Assets 

My second appointment was at 1:30 for pre-testing. It was another very quick, easy appointment. The doctor just asked me some basic questions like if my allergies were still the same, if I had any other surgeries in the last year aside from my first cochlear implant, if I had any medical conditions, yada yada. Then he took my blood pressure which was fine, looked at my throat and gave me a short physical all of which were fine. The last step was having my blood drawn just so they could get my blood cell count or something basic. He said I was healthy and good to go with my surgery. He just reminded me to stop taking all of my medications which I have already begun.

When I got home one of my friends whom I met through the cochlear implant groups on Facebook and the Haddonfield area support groups sent me an email. Apparently the Hearing Association of America is looking for articles for a recent issue from people with cochlear implants. He gave me their contact information and I sent her an email so we’ll see what happens! It would definitely be awesome to collaborate with them on something!

Everything is starting to happen so fast with all of this; it’s so exciting! I think I have all of my appointments now. They are:

  • November 30th: Date of Surgery
  • December 2nd: Meet with Louisa and Advanced Bionics to upgrade first Naida Q70 Cochlear Implant to the Naida Q90
  • December 10th: Stitches Come Out
  • December 24th: Activation Day!

Tomorrow Advanced Bionics is hosting an online webinar on the Naida Q90 processor. I signed up to attend, so it should be interesting learning more about it especially since I know I’ll be upgrading early. I’ll be sure to blog about whatever I find out!

 


chils-asks-questions

Image Credits: Work In Sports 

Since getting my cochlear implant last year I have had many people come to me and ask me questions about it. I love answering questions about my cochlear implant and I love that people want to ask about it. It’s important to ask a lot of questions especially if you are considering having the procedure done yourself. Getting a cochlear implant is the best thing I’ve ever done, but  it doesn’t change the fact that it’s still surgery. You need to know the risks and what to expect to determine if it’s right for you (which I obviously decided it was for me). Your surgeon shouldn’t mind answering your questions, and if he does, then that right there should be a red flag for you that you need to find another surgeon.

The first time I met Dr. Wilcox a year ago I came to him with a grand total of 32 questions. He answered every single one of them without hesitation. He wasn’t annoyed at all by any of my questions; he was more than happy to answer them and asked if I had any more for him! Here are the 33 questions I asked my surgeon prior to my first cochlear implant surgery:

  1. What are the risks?
  2. Are cochlear implant patients more likely to get meningitis? Should I get a meningitis shot? (The answer to this was no by the way. I never did get a meningitis shot.)
  3. Can the surgery cause an increase in headaches or migraines? (Another no.)
  4. Is there any chance the magnets will react to metal or other materials? (No reactions but my external magnet does stick to things which I think is fun lol)
  5. After it heals will I be able to put things in my hair and/or wear hats? (Yes I can but some hats cause my magnet to fall off I’ve found).
  6. Will I lose my residual hearing? (This is usually a yes for most people. I am the exception. I still have the same amount of residual hearing. It depends on whether or not your surgeon hits the nerve. Mine was able to avoid it, but they usually can’t avoid hitting it).
  7. Do you just do one implant at a time? Which ear do you suggest doing first? Should I have them both done eventually? (This depends on your surgeon. Mine does one at a time and it didn’t matter which one I did first. They usually like to do the worst ear first but mine are the same. He recommended I do both but said it was always my choice.)
  8. How long have you been performing the surgery for? (I forget the answer, but it’s a long time lol)
  9. Will I be able to use headphones after everything is healed? (This was a yes but I have to avoid metal ones because they can stick to the magnet).
  10. What is the chance that I’ll be able to talk on the phone once implanted? (He couldn’t really give me an answer because everyone is different, but I am able to talk on the phone with ease now. It did take me about a month to get to that point though).
  11. How soon can I be activated after surgery? (I was activated exactly 1 month post surgery).
  12. How often should I go for a mapping? (This kind of depends on the person. I believe in the beginning it was once a month then it dropped down to once every 6 months and eventually once a year I think but if you’re not happy with the mapping you can request them sooner).
  13. Do they take batteries? Are they rechargeable? If not, where do you buy them? (I have three rechargeable batteries and one that is not. I don’t like the none-rechargeable one to be honest. I bought the batteries from the hospital since I have trouble finding them in stores but I’m told some people can find them at the drug store. Online too.)
  14. Are the implants water resistant? (No, they are not but there is an aquacase that makes it water proof! :))
  15. Do the implants come apart? (I can’t move the implant in my head of course but the external part comes off and I can detach everything).
  16. Can I wear my implant to the gym? (Yes but I learned to use the aquacase after having too much sweat cause the battery to shorten out and it not to work right.)
  17. How will the implant affect tinnitus if at all? (No different. If anything I think I hear it less now. I could feel the electrodes moving in my head before I was turned on though. That was pretty neat.)
  18. What are the parts of the cochlear implant? (I’m too lazy to answer this now. Basically internal, external with the battery and mic)
  19. Will I be put under anesthesia for the surgery? (Yes I was. I was knocked out in 2 minutes and didn’t feel a thing. I woke up unaware of where I was and what was happening and I was “weird” to put it lightly.)
  20. When would be the soonest date I could have the surgery done? (I had surgery performed exactly one month after meeting my surgeon, but it depends on the hospital, schedules, and how quickly you get testings/approvals)
  21. Is there currently a wait-list for this surgery? (No, there wasn’t. Again this depends on your hospital).
  22. How much more clarity and volume should I expect to get from the implant? (I’m not sure what he said but I ended up with about 93%!)
  23. Is there a chance that I’ll experience issues/soreness with my jaw and/or throat after surgery? (Yes from the breathing tube. I had a very sore throat and couldn’t eat solid food for about a week or 10 days).
  24. Will my face go numb after surgery? (This can happen if the surgeon hits a nerve. My surgeon was very well aware of the nerve and said he knew how to avoid it. He was true to his word!)
  25. Will I lose my taste buds after surgery? (See #24).
  26. I work on a computer all day. Can this cause issues such as static with my implant? (No.)
  27. Will the implant last for life? (Internally, yes. Externally it may be upgraded every few years as advanced in technology are made).
  28. How will my implant work with my hearing aid for the ear that does not receive an implant? (You can sync them together or something if you have Phonak hearing aids. Which I don’t. So it really didn’t make a difference).
  29. Will I be able to adjust the volume on my Cochlear Implant on my own or will it be computerized? (I can adjust it to an extent. If I ever need significant changes I can have my audiologist reprogram it on her computer).
  30. Will I feel electric jolts after being activated? (I did before they turned it on a bit).
  31. Can you give me more information on EAS implants? Would you recommend that for my type of hearing loss? (I honestly don’t remember what any of this means).
  32. Will the implant whistle like how my hearing aids do? (No they don’t and I’m quite thankful for that!)

This second time around I have far less questions, mainly because I’ve already been through it once and have most of my questions answered. But I  still have a few including:

  1. Can I sync my two implants together (Not really. They are working to combine them but haven’t really done it successfully so far. However, I may be able to match the setting or something like that so they work together).
  2. Can I wear my first implant when recovering from surgery for my second one? (Yes).
  3. What kind of testing will I need to go through? (Since it’s only been a year since my first surgery, I don’t have to go through most of them again. I just need another evaluation for insurance purposes).

Those three questions are really all I have so far, but I’m sure I’ll think of more to come. I’m very excited for round 2 of this incredible, blessed journey!


mom and i

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.

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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
  • O-town
  • Michelle Branch
  • Good Charlotte (x2)
  • Simple Plan (x2)
  • Forever the Sickest Kids (x3)
  • No Doubt
  • The Ataris
  • Yellowcard
  • 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.


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If you’ve been following my blog, then you’ve undoubtedly heard me speak a lot about my relationship with my boyfriend. It probably sounds like a fairy tale romance, right? Most of the time that’s exactly how it feels, but like any other couple, we face our own obstacles, too.

Prior to meeting my boyfriend, my dating life was pretty rough. I had 3 failed relationships between 2011-2013. My first boyfriend was abusive and would scream at me all the time. He was not at all supportive of my hearing loss. He would tell me I’d never be a mother because of my hearing loss and always make me feel guilty for my hearing loss, something I could not change. Sometimes he would make fun of me for not being able to hear or talk behind my back or use my hearing loss against me. I left after 5 months. It may sound like a short-lived romance, but it was definitely 5 months too long.

My other two relationships also did not see much success. My 2nd boyfriend was extremely supportive of my hearing loss and is a good friend of mine to this day. We broke up because we were in different stages of our lives and in our relationship and it just wasn’t working for us. He was 10 years older than me, so that probably contributed quite a bit to it all.

My third boyfriend was the strangest relationship and the hardest breakup yet. It was long-distance with a much older man (apparently I didn’t learn my lesson from failed relationship #2…). One day he was my boyfriend and the next day he wrote me out of my life without giving me any explanation for 7 months. A year later I discovered he cheated on me. Pretty easy to see what went wrong there…

All three of these relationships ended ultimately for different reasons, but they also all still had things in common: they proved that dating a deaf girl can be a challenge. Some handles it better than others, but it never changed the fact that it was a challenge.

I wrote about how I had a bit of anxiety prior to getting my cochlear implant already. Combine the anxiety from my hearing loss with first date jitters (or any date jitters for that manner) and you got anxiety on steroids. Dating with hearing loss is HARD. That’s why it’s so common for deaf people to date other deaf people. They even make dating sites for deaf people to find each other. Some deaf people completely swear off non-deaf people from dating because they feel a non-deaf person could never relate.

I never dated a deaf person before, but I can definitely relate to that way of thinking. You can’t exactly make a non-deaf person feel what it’s like to be deaf. You can tell them what it’s like, but it’s not exactly the same.

A typical first date for me with any of my exs (or even my current boyfriend) was a lot like this:

  • Text or FB the person constantly because I couldn’t hear on the phone
  • Spend way too much time coming up with a good place for said first date
  • Change my mind about the place 10,000 times because I declare it “too loud to hear anything”
  • Finally settle on a place to have dinner
  • Smile, say “yes” a lot, and nod because I have no idea what my date is saying at dinner
  • Stare at my date hoping he gets the memo to translate everything the waiter is saying to me because I can’t hear the waiter
  • Go to see a movie without the caption glasses  because caption glasses are awkward and annoying and I don’t feel like dealing with that on a first date
  • Stare at a movie screen trying to figure out what the movie is about since I can’t hear
  • Glance at my date every couple of minutes to try to read his facial expressions to see whether or not he thinks the movie is good
  • Agree with him and try to say some generic comment about why the movie was or wasn’t good
  • Wonder if there will be a second date and if there is wonder why because I’m not exactly the greatest date in the world on account of the fact that I can’t hear.

I have to say though, 100% honest, things with my boyfriend now, Larry, were a lot different. Our first date was at Nifty Fifties. I know I definitely didn’t hear every word he said, but I did okay. Our first date was actually on Labor Day, so that probably helped. Nifty Fifties was not very busy that day. If my memory is correct, there was only about 1 other family there. We were relatively alone. And I was super duper duper nervous prior to our date. I changed my outfit about 10,000 times that day. But as soon as I saw him all of my nerves went away.  I think when you meet someone really truly special that you’re meant to be with, that’s just the way it works.

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This picture was taken moments before meeting my boyfriend for our first date. I spent over a week over-analyzing what to wear for that date…

My relationship with Larry has always been a bit intense. That’s one of the best ways to describe it. When I first met him I didn’t have my cochlear or any plans to get a cochlear implant. I just had two hearing aids that really didn’t benefit me all that much. He definitely got to see the before picture.

Not all of our dates were as easy as Nifty Fifties prior to getting my cochlear. I couldn’t always hear him that well, even if he was just over my house talking to me alone. Some days I just couldn’t hear or understand him that well (in all honesty, sometimes Larry has a tendency to mumble or not speak very clearly, which made it a little more difficult. Shhhh. Don’t tell him I said that though…).

I remember our second date was a bit of a challenge. For our second date we went to eat at The Smash Burger and then went bowling. I couldn’t hear anything at all at The Smash Burger except for the milkshake machine thing. Smash Burger makes excellent hand-spun milkshakes……..but when you’re hearing impaired and trying to hold a conversation with your soon-to-be-boyfriend, they become a little less awesome. The bowling alley wasn’t too much better. We had to wait awhile to get a lane, so to pass the time we played a few rounds of pool. I’m pretty bad at pool, so Larry tried to help me. Except I couldn’t hear him well. This was our second date. Yes he could and did show me what to do a bit, but it was still slightly awkward at times since we weren’t yet a couple or anything yet. Looking back at it now though, it was pretty adorable.

There was also that time we went to Frightland just before Halloween. It was dark and there were long lines to wait to get into the different attractions. Everyone was talking with their friends to pass the time. Larry and I tried to talk and play music. Except I couldn’t hear the music on his phone at all and I couldn’t hear him well enough to speak, either. We were actually trying to play a game, but we gave up because games become much less fun when it takes you 20+ minutes to hear what the other person is saying. When we gave up on the game, Larry looked at me with very sympathetic eyes, gave me a hug, and said, “Wow. You really can’t hear.” He genuinely felt sorry for me. He knew I was going through something hard and difficult that he could not fix or relate to. He did something no one quite did before: showed love, and compassion for me despite my hearing loss. I never forgot that night.

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You don’t have to hear to smile and take pictures. He’re a picture of us at Frightland. It was so cold!

Of course it would have been great to meet Larry when I had my cochlear. I always tell people that the biggest mistake I made with my cochlear is waiting this long to get it. However, I’m extremely thankful that I met Larry before getting my cochlear implant. I’m glad he got to see and know me before getting my implant.

When you love someone, you love all of them. Every part, even the parts that can be hard for others to love or accept. Larry loved me even when I couldn’t hear. He accepted it. It was never a problem for him.

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Larry always supported my decision to get my cochlear implant. It’s not every day that a girl tells her boyfriend “Hey I’m getting a major life-altering surgery” within the first two months of them being together — but that’s exactly how it was with us. He was so happy and excited for me and he enjoyed learning about it from me.He would outright tell me, “I want to learn from this.”

When I went through everything with getting my cochlear, Larry and I’s relationship was still very much new. A lot of people would say things like “Does he realize when you get this done you’re going to have a magnet on your head? Is he going to accept that and be okay with that?” I always said yes. But at the same time, I was never really sure. I was definitely still in the process of getting to know Larry at the time, and there’s no saying how a person will or won’t react to change or something like that. I mean, when I first got together with my ex I didn’t think he would go on to be abusive towards me, but that’s exactly what ended up happening, unfortunately.

When Larry said he’d stand by me and support me, he definitely wasn’t kidding. He couldn’t actually be at the hospital the day of my surgery due to hospital rules that prohibited non-immediate family members from being there, but the next day he was there with flowers and gifts to help cheer me up and make me feel better. When I was taking strong pain medication that knocked me out and made me loopy, he still loved me. When I had part of my head shaved, a ton of stitches and extra greasy hair due to not being able to watch it for 10 days, he still said I was beautiful.

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There were actually days when I looked much worst than this after my surgery and Larry would still say I looked beautiful — and he meant it.

The hardest part of the cochlear implant process was definitely the month after my surgery. During this time I had to wait for everything to heal before I could be activated. I had no hearing in my left ear and only what my hearing aid provided (which was hardly anything at all) in my right ear. I couldn’t watch movies. I couldn’t watch TV. I couldn’t hear music. I didn’t want to leave my house much because I couldn’t hear people outside at all. So we stayed inside and played games and cooked and hung out at my house for a month. I was probably pretty boring and lame, but he always enjoyed spending time with me and never once complained. He stood by me and supported me. When I got upset and frustrated over not being able to do anything, he reminded me of how soon I’d be able to do everything and it would be more than worth it in the end.

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We played a lot of Rummy when I was healing from my surgery…and I always won. 🙂

Once I was activated, Larry couldn’t wait to talk to me, to share music with me, and to finally, for the first time ever, get to talk on the phone with me. I explained  how my cochlear would take time and it was a progress to learn how to hear things, so he made it his mission to work with me. Within the first week of activation, Larry discovered he could sing to me and I could actually hear him. Singing to me became his special thing, and I loved it. The first night he did it he held me in his arms for two hours in his car outside of my house under the stars and sang Brad Paisely’s “She’s Everything”  and I not only hear every word of it — I felt it. I felt that I was his everything. I felt so much closer to him that night, just being able to hear his voice like that for the first time ever.

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Our first post-cochlear implant activation date to Smithville. Everyone says I look like I have a crown on in this picture. Probably because I’m the Princess…Larry’s Princess (totally not a Christmas tree in the background or anything…. :-p)

Now I demand that he sings to me. It’s my favorite thing in the entire world, and he enjoys singing to me, too. Music has always been something very special for us that has a way of pulling us closer together. It helped bring us together before my cochlear through sharing our favorite songs, going to the News Boys concert for one of our first dates (also the date where I came home and told him I was in love with him…), and even just discussing it, and now that I can truly hear music and he can sing to me on the phone, it’s brought us even closer together.

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One of our first dates… The News Boys concert. We look so different now!

The ability to talk on the phone has opened whole new doors to us that we didn’t even know existed. We can talk more on a daily basis now. Larry is a truck driver, so before our communication would sometimes be limited since obviously he can’t text and drive. However, with modern technology such as his radio or headphones, he is able to make his phone hands-free and talk to me. We prefer talking on the phone to texting now because it’s so  much more personal. Last week I got sick and wasn’t able to speak well so we couldn’t talk on the phone. We both missed it so much and agreed it was much better than texting. I missed the sound of his voice. I missed his singing. I couldn’t hear his voice that well and he didn’t really sing to me prior to getting my cochlear.

My cochlear implant journey is a journey that Larry and I have been able to share together. He’s been with me every step of the way. He’s been with me before I got implanted, when I was implanted, and now that I’m activated. He’s supported me throughout it all and learned about it all with me. It’s opened many new doors for us and definitely strengthened our relationship. We are teammates that support each  other through thick and thin, and he’s definitely been an MVP during this journey.I’m so blessed to finally have found a man that can handle me whether I can or can’t hear, because Larry knows that  regardless of how well I can or can’t hear, it doesn’t change the person I am. He loves me with and without my ability to hear. (However, of course we both prefer it when I can hear…definitely makes the communication thing a bit easier and more enjoyable. ;)).

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My cochlear implant journey has been a long, yet quick process all at once. It’s been a roller coaster ride even more intense than Kingda Ka, and I know he’ll be first in line to see the next thrill it brings us. He’s been one of my biggest supporters and fans, and I’m very thankful to have him in my life and blessed to see how the cochlear has helped us to grow even closer together.