The World is becoming more clear!

I’m falling in love with my cochlear implant! The world around me is extremely loud, and I’m still trying to get used to everything. So much has happened since my activation and mapping appointments.  I had to force myself to wear the just my cochlear implant, which meant I had to take out my left hearing aid.  I really did not like this.  All the sounds were loud and confusing. A few days after my last mapping, I was able to tell the difference between men, women and children’s voices.  Everyone still sounded like chipmunks. But the more I wore just my cochlear implant, the more everything started to sound clear and make sense.  The chipmunk voices became more like robotic/helium voices.  But now everyone is starting to sound like what I think may be “normal”.  The sounds around me are becoming more clear.  I still rely a lot on visual access to the speaker and sign language.  My brain is being trained to figure out all the sounds.  After about a week of wearing the implant alone, the squealing slowly diminished and became loud white noise. That is a huge relief as I’m not annoyed with the world and I don’t have anymore headaches. When I first put on my cochlear implant in the morning, I do hear a little bit of squealing but it becomes white noises after a few minutes.  It is also incredibly loud and that it is uncomfortable!  Imagine turning the stereo on and the volume is turned up to the max; you jump at first.  After a little while, maybe a minute, everything is fine.  I wish the implant wasn’t so loud when first putting it on in the morning.

I force myself to listen to familiar music while driving in the car matching the lyrics with the songs.  I always watch TV with captioning on and now try to match what I hear with the captioning.  I’m starting to recognize words in a specific topic in isolation, and I am beginning to understanding phrases from others without the visual support.

One morning, Peter and I were going somewhere, and I decided to give myself a pedicure while Peter was getting ready.  I’m sitting on our bathroom counter painting my toes.  Peter is in the bedroom and he says “Babe! I don’t even know what to wear!”  I said, “Clothes!  You wear clothes!  DUH!”.  Then I stopped painting my toes. “Peter!  I know that was a sarcastic remark, but that’s no surprise because I’m sarcastic and that’s definitely a “Kayla answer”, but did you know that I understood you without looking at you for the first time using just my cochlear implant?!”  I got a big hug and a high five.

While driving home one night from a cook-out, I asked Peter to do a listening exercise with me.  Since I was driving in the dark, there’s no way I could read his lips or have any form of visual cues.  He gave me the topic “Animals” and started  saying different animals.  My job was to see if I could repeat them.  At first, this was hard because I didn’t have visual access.  That forced me to really listen. I tried to glance over at him and he told me to look away. He repeated himself until I could repeat what he said correctly.  We went through a lot of different animals, and I got most of them right the first time.  He even threw in “crab cake” to throw me off.  We switched over to different foods.  There were a few times where I really couldn’t make out what he was saying.  Peter learned that even though my speech is pretty clear, he noticed that I can’t always pronounce some of words correctly.  He noticed that I struggle with /s/, /ts/, /st/, and some other sounds.  He has me repeating words and work on articulation.  I get frustrated because I really dislike speech, but I am going to have to work on that.  I’m considering some speech therapy sessions to brush up on my articulation skills.

First time using the Nucleus AquaPlus:

I spent an afternoon with Peter’s family at the lake he grew up near.  We decided to go for a swim and enjoy ourselves.  The lake has a dock in the middle where we can jump off into the water.  I wanted to give my AquaPlus a try.  The Nucleus AquaPlus is the waterproof accessory that came with my cochlear implant kit.

Here’s a really good video that shows how the AquaPlus accessory works:https://www.youtube.com/watch?v=KlyWVsYLWUk#action=share

I put on my waterproof cochlear implant and headed to the lake.  I was a little nervous because this is my first time using a very expensive device in the water.  As I waded into the water, it felt so strange being able to hear the world around me.  I’ve been in the water with my hearing aids on before, but never past my knees.  The water was already up to my chest and Peter’s nephews were splashing water around me.  I continued to wade out in the water until I could no longer touch the ground; I started to swim with my head above the water.  I was so paranoid and it felt extremely weird being able to hear the water sloshing around my head.  I climbed up onto the dock and joined everyone to jump off.  Even though I have the processors connected to my bathing suit with a safety line, I still wanted to hold onto it before jumping in.  I was starting to get second thoughts about this.  Pressing my hands up against the processor and my ear, I jumped off the dock.  I noticed the magnet came off my head.  I still can’t reach the ground and I’m swimming around trying to put the magnet back on my head.  I wasn’t able to do this!  I’m really good at multitasking, but not so much in the water.  I swam back to the dock and climbed out.  I thought I had the magnet attached to my head but I wasn’t hearing anything.  I took it off, put it back on and I could hear again.  This was amazing!  I just submerged myself underwater with my processor.  I wanted to go again; this time I pressed my hand onto my ear and the magnet.  I jumped off the dock again.  This time, the implant stayed on and I heard my own bubbles under water!  When I came back up to the top of the water, I yelled out to everyone that I could hear my own bubbles underwater!  I was so excited and amazed how the waterproof accessory worked with the cochlear implant.  I swam back towards the beach and relaxed on a float.  I hun out with with Peter’s family, who don’t know how to sign.  Peter’s nephews are taking a great interest in learning how to sign. It was so nice to be able to hear while in the water — it just makes everything so much easier.  I still relied on lip reading and signs from Peter. We left the lake and headed back to his parent’s house and I took off the AquaPlus.  My processors were dry and I put them back on.

I recently went to the pool and used the AquaPlus for the second time.  Before jumping in the pool, I become really nervous thinking I need to take off the implant.  It’s going to be really hard breaking the habit that I have the opportunity now to hear in the water.  Let’s see if I can comfortably break 26 years of swimming in silence. I find myself using this when I’m with people that don’t sign versus those that do sign.  I prefer to swim and be in the water without the AquaPlus.

Using the Phone Clip:

One night, while multitasking (working on the last few lesson plans for summer school, FaceBooking, reading lyrics while listening to music from my laptop) I decided to stream the songs directly to my implant.  I pulled out my phone clip which has a bluetooth feature.  After charging it for awhile, I paired the phone clip with my processor and my phone.  I started to play some music from my Spotify account and I could hear Whitney Houston signing “I wanna dance with somebody…” in my processor. I left my phone on the couch in the living room, took the phone clip with me into the bedroom and I could still hear the music playing in my processor.  This acted like headphones, only I’m not connected to my phone or laptop with a wire, and is exactly what it’s like using my FM coupled with my hearing aids.  I know I’m going to love this accessory because I’ll be listening to music while I’m working in the office without bothering my coworkers, or at home while Peter is sleeping and I don’t have to worry about waking him up.

Maybe one day, I’ll be able to talk on the phone and use the phone clip as a bluetooth device.  #futuregoals!  I have another device called a “mini mic” which is a microphone for someone to wear and I can hear their voice directly through my processor.  I haven’t had the opportunity to use this yet, but I plan to in the near future!

As for learning “new sounds”, there hasn’t been a lot of “new” sounds.  It’s been more of hearing sounds at a distance I never heard before unless it was right up to my hearing aids.  Here are some mini stories:

• One morning, I was on my balcony skyping with mom.  I was struggling to understand her as the birds were constantly chirping and tweeting.  I had to go inside of my apartment in order to hear her better.
• I’m hearing a lot of high frequency sounds more than anything, especially /shh/ and /sss/.  These sounds are very loud and crisp.  I hear these sounds a lot better than other sounds.
• I poured milk onto my cereal one morning, and I heard my rice krispies go “Snap! Crackle! Pop!”  It was a pretty fun moment!

• Once day I was at the store with Peter and his family.  There was a small exercise trampoline with a child jumping on it.  I heard the springs squeaking.  I could still hear them from the other side of the store.  It sounded like it was right next to my ears.
• When the water is running in the sink, I feel like I’m hanging out near the water falls.  It’s incredibly loud!
• One evening while visiting my mom in Blacksburg, I was looking through pictures.  While sitting on the couch, I could hear something going on so I looked around the room trying to match the sound with whatever is going on.  I looked at mom flipping through the pictures.  I looked at our dog playing with her toys.  I kept searching around the room. I finally heard consistent tapping which is a familiar sound.  I asked my mom if my dad was in the room at the back of our house making his own cigarettes; she said yes.  I was hearing the mechanical sounds from his machine and him tapping the cigarettes on the table to get the tobacco in the tubes. My parents were amazed that I was hearing things at a distance.
• I went out one afternoon with Peter fishing.  We ended up in DC and I couldn’t fish with him due to not having a DC fishing license.  While he fished, I hung out on the bridge right across from the Reagan Airport.  I worked on identifying different sounds between cars, motorcycles, trucks and airplanes.  I’m still working on identifying the different vehicles and which directions they come from.

Even though things are going really well and I’m starting to identify and hear sounds at a distance.  I still have a long way to with my auditory training.  I have my first appointment booked for auditory rehabilitation in October at Gallaudet University.  I’m looking forward to my next mapping appointment which is in a matter of weeks.

Follow Up Appointments

The past few days have been rough and challenging trying to get used to wearing the cochlear implant.  I've had a few more follow up appointments following the activation appointment for mappings and to make some adjustments.

Appointment #2: Follow-Up: July 15

I continued to struggle with these squealing sounds and trying to get all these sounds to unscramble in my brain.  Things were incredibly loud!!  I still couldn’t differentiate and make out what exactly I was hearing. I was still getting  headaches. When I was alone, I was having my mini meltdowns.  In spite of the challenges, I knew I had to keep pushing through and keep the cochlear implant on.

Before heading out to my second activation appointment, I went out of my apartment first while Peter followed me.  I was ahead of him in the hallway and heard someone talking.  I looked back at him asking if he had said anything.  He looked behind him and pointed out that people from 2 apartment doors down from mine were the ones talking.  Amazing, right?!

Day #3 was when I went back for a second mapping with Dr. Cain.  This time, it was in Washington, D.C., at Sibley Memorial Hospital.  I explained to her all the squealing I experienced, all the new discoveries I’d made, how I was hearing a lot of higher frequency sounds over the lower ones, the struggles, and other things.  She recommended that I take my right earmold from my right hearing aid that I’m no longer using, and put in on the cochlear implant to help keep it in place.  She repeated the test from the first activation day where I had to listen to different beeps and inform her when the beeps were soft, comfortably soft, comfortable, and comfortably loud.  These beeps increased a lot since the first activation.  She turned off the first two electrodes to help reduce the squealing.  We assumed the squealing is really all the background and white noises happening around me.  We increased the frequency sounds and set up the different programs.  These programs are different settings that increased loudness for my implant.

After we programmed my processor and completed our second mapping, we decided to do the Ling 6 sounds test.  This is a test where the audiologist blocks her mouth using a speech loop, and makes 6 different sounds; it forced me to use my  hearing, without any visual support, to identify sounds of spoken language.  These 6 different sounds are isolated phonemes to target the low, middle and high frequency sounds.  The Ling 6 sounds are /mmm/, /ahhh/, /oooo/, /eee/, /shh/ and /ssss/.  Dr. Cain proceeded with this test, and although I got the other sounds mixed up, I identified /sh/ and /s/.  This was the first time I was able to do this!  In the past, I was never able to identify any of these sounds without my hearing aids.  With my hearing aids, I often was able to differentiate from /mmm/, /ahhh/, /oooo/, and /eee/ but never /shhh/ and /ssss/.  With the cochlear implant, now it’s the opposite!  We allowed Peter to complete the test with me so he could practice with me at home.  When he completed the test with me, I got all 6 sounds correct! I was shocked!  Dr. Cain shared with me that things are heading really smoothly in the right direction.

I learned that my cochlear implant is probably set up at 25 decibels which is within normal limits (visual support and explanation is posted in blog #6: Beginning My Cochlear Implant Journey). We haven’t done a hearing test in the testing booth yet.

After my appointment with Dr. Cain, I went out to my car.  I looked around for this roaring sound that I heard,  thinking it was a motorcycle going by.  Peter pointed up to the sky at a plane.  I’ve never heard this plane sound before! It wasn’t what I thought a plane sounded like.  I also started to hear these high beeps.  I looked around and discovered it was the birds.  It didn’t sound like birds at all.  I’m constantly looking around trying to make sense of everything, but it’s hard when everything sounds the same!   

That evening, I decided to test myself using the microwave.  I prepared my dinner and popped it in the microwave for about 2 minutes.  After starting up the microwave, I went into the living room looking out towards the balcony, facing away from the kitchen. I could hear the microwave making noise.  I’m not sure I can explain what exactly it sounded like, but it wasn’t its usual humming sound that I’m sure most of you are familiar with.  I finally heard a DING! I looked at the microwave and it was done.  This is the first time I’ve heard the microwave beep at a distance and without counting down the minutes. More than anything, I was excited that I could hear it from the other room.  I wonder if I’ll be able to hear these sounds at a distance in the future with the cochlear implant.  

We went to Annapolis the next day to spend time with some friends.  Before meeting up, Peter and I walked downtown.  I kept hearing this clicking noise thinking it was the key ring on my bag but it wasn’t.  I kept walking and still heard CLICK, CLICK, CLICK, CLICK…. I looked down and realized it was my shoes hitting the ground.  I kept looking around and asking what sounds were.  I’m wondering if he still has patience for me asking a lot of questions!  We met up at the restaurant and they were sitting in front of a singer playing his guitar.  This meant all I could hear was this incessant, chaotic sound while trying to hear and make sense of everyone else. Everyone and everything still sounded distorted and confusing. I was also wearing my hearing aid to help. I was overwhelmed  I got a headache. I wasn’t really involved with anyone or any conversations.  I looked around at the boats going by and enjoyed my crab dip. We were there for a couple of hours, and then we decided to leave.  We stopped  by a few shops on our way home.  We were at this one store and while I was looking around, I kept hearing a ringing noise.  I scanned around the store and saw that a little kid was playing with crystal wind chimes.  I walked towards them, the ringing became louder.  I grabbed Peter and walked him over to the wind chimes and I told him that I could hear it! I swear! I find myself like a little kid discovering sounds!

When returning to the place we stayed, I crashed and took another nap before heading back out.  I decided that night that I wanted to go out without using the cochlear implant. As much as I preferred to utilize only my hearing aid, it was still pretty hard to hear with one good ear. Everything seemed like a lose-lose situation for me when I was in the hearing world with little to no sign language support.  I faced the challenge of hearing with one ear, or being completely deaf, or wearing the implant with or without the left hearing aid and hearing a bunch of noises that didn’t make sense to me.  I wasn’t truly enjoying myself at all. I just wanted to be back at home by myself or with a group of people who use sign language.  Peter tried his best to sign at times, but he’s still learning!

As the next couple of days went by, I continued to increase the volume.  I provided myself with some therapy by listening to familiar songs without the lyrics, watching some of the news on TV, and listening to people talk, including my own voice.  I practiced reading some things out loud to listen to myself.  The more I didthis, the more clear my own voice became.  It sounded like I was listening to my own voice on tape.  The squealing decreased and sounded like  listening to white noise on tape, so it was like  trying to make sense of sounds and voices on top of the white noise.  It was still frustrating, but nothing compared to my frustration a few days ago.  I found it harder to watch TV shows compared to the news, because the news had less background noise than the TV shows.  Peter continued to practice the Ling 6 sounds with me.  I was still mixing up some of the Ling 6 sounds, and I still require more practice with them.  I became frustrated doing this test because I wanted to get them all right.  All the sounds that I hear are starting to sound like they are echoing in my head.      

Appointment #3: Follow-Up: July 19:

July 12 marks the 7th day since my activation date: ONE WHOLE WEEK!  I have been wearing my cochlear implant alone as much as I can.  The only time I’ve worn my left hearing aid was while I was teaching.  This helps me become comfortable hearing through the implant and forcing my brain to work harder.  Prior to my appointment, I was prepping dinner in the crockpot.  Peter was getting my attention and was shaking my hand really fast.  I learned that my bracelets were making a ton of noise.  I glanced down at my wrist and smiled.  Peter smiled, too and continued to shake them. We headed out to Bethesda.  On the way there, we put on my Taylor Swift CD.  I’m really familiar with her songs as well as the lyrics.  This was a great way to practice some listening skills.  My sound discovery of the day was what songs sounded like- all the singing sounds like Alvin and the Chipmunks, but I can’t always make out the words.  I don’t hear a lot of musical things.  The drums sound like the audience is clapping along with the beat and sometimes high heels walking down the hallway.  We decided to do the Ling 6 test while I was driving.  I knew this would be challenging because I could hear the car running and had to focus on my driving.  Peter proceeded to give me a couple of Ling 6 sounds and I got 7 different sounds correct consecutively.  I was feeling pretty impressed with myself!

After arriving,  Dr. Cain was really excited to learn about any new sound discoveries over the past couple of days.  I shared with her my discoveries and she shared that things are really heading in the right direction.  We discussed about the 6 Ling Sounds test; she actually informed us that there is a 7th sound, /silence/.  Often time, most of us are familiar and can figure out the test with the 6 different sounds, but silence can help figure out if we can here the sounds or not.  She wanted to do a pure-tone hearing test in the sound booth.  This is a test where I listen for  beeps at different frequencies and volumes.  While I was sitting in the testing booth, I found that my breathing and the clicking the button was louder than the beeps.  I held my breath a couple of times in order to hear the beeps.  Sometimes, the ringing in my ear made it hard to hear some of those beeps.  I looked through the glass of the testing booth and saw that Marla and Peter were discussing how high the beeps were.  

Dr. Cain shared the test results with us.  We were all shocked!  Often, the first time a cochlear implantee gets their hearing tested in the booth after activation, they  score within the moderate range.  My first test  results were within normal limits! I swear I could see Dr. Cain’s eyes become watery.  This was excellent news!  I was feeling really proud of myself.  I explained to Peter and Marla my audiogram before the cochlear implant surgery and where my aided results were.  It’s amazing seeing the gains I’ve made in a week. 

Even though that I scored in the “within normal limits” range, I still cannot make sense of things including the sounds.  What’s marked on the audiogram are the beeps that I was able to detect in a quiet environment. This is another misconception that most people have.

After discussing the results of the audiogram, Dr. Cain completed another mapping test.  Again, I had to count the beeps, and then listen to them become louder until I was comfortable with the sounds.  We programmed both processors; we will always program the processor I’m currently wearing as well as the back-up processor.  When the processor was turned back on, everything was even  louder than before.  I liked how Dr. Cain gave us some extra time in the room to chat about things in order for me to get used to hearing at a new level.  We discussed many things about cochlear implants, including audiograms, perspectives of implanteess, different modalities, etc.  It was a really great appointment!  

It is expected that in the next couple of weeks, I’ll continue to experience hearing all the white noise, distorted sounds and chipmunk voices.  My brain will slowly start to make sense of everything.  Each day, the amount of frustration and tears decrease; I continue to increase the volume and slowly change the program settings.  Each time I adjust the program setting, it becomes louder.  I continue to face a lot of challenges, especially when I expand my time using the cochlear implant only. I still rely on any visual support possible; making sure you make eye contact while having a conversation with me, using sign language as much as possible, captioning, etc.  I love having my left hearing aid in as it helps my right side make sense of what I’m hearing.  However, if I don’t allow my brain to work hard using the cochlear implant only, it will take a longer time to really get used to wearing the implant.  The squealing is starting to slowly decrease and the voices around me are slowly starting to become clearer.  Everyone sounds like squeaky mice or they have a helium voice.  Here’s to hoping that I continue to have patience and things will continue to get better with time.  It’s important to think in weeks, not days.

Activation Day!

Here’s another lengthy post.  I haven’t had the time to actually sit down and explain each of my appointments and experiences using the cochlear implant.

Before discussing everything, I want to give a special shout-out to my wonderful audiologist, Dr. Pamela Cain.  She is one reason why I chose to go with Johns Hopkins.  Her support, guidance and knowledge with the implant has been incredible; she has been an amazing audiologist during my Cochlear Implant journey! 

Here we go! Activation day has finally arrived.  I can’t say that I’ve been looking forward to it as I didn’t really know what to expect.  Prior to the appointment, I was hoping to hear sounds similar to my hearing aids.  I thought it would be like getting a new hearing aid.  When getting a new hearing aid, everything just sounds robotic. I already knew that I was going to hear different and new sounds.  I knew that everyone was going to sound like they’ve sucked up helium.  I knew that everything was going to be loud.  

Johns Hopkins has multiple remote locations for their services.  Fortunately, I didn’t have to make the drive back to Baltimore for my activation appointment.  My activation appointment took place at the Johns Hopkins medical center in Bethesda, Maryland.

As you can see, my earlier appointments with Dr. Cain took place in Bethesda. My appointments with Dr. Della Santina, surgery, and follow-up took place in Baltimore at The Johns Hopkins Hospital: Outpatient Center in Baltimore.  

Appointment #1: Activation Day: July 12, 2016

I showed up to my appointment with Peter, mom and Marla.  Everyone was asking me if I was excited or nervous, I really didn’t know how I was feeling.  I was ready to hear out of my right ear again, and  I was missing wearing my right hearing aid.  Johns Hopkins provided an interpreter for me again.  I really have to give them props for providing accessibility for the Deaf/Hard of Hearing in their hospital. After being called back with Dr. Cain, we discussed how things have been since the surgery.  Everything was healing beautifully! She said the incision looked amazing and I was not having any issues.

We got to explore the cochlear implant kit that I will be keeping.  This kit looked like a huge briefcase and it was packed with everything that I had requested on the order form back in April.  

The kit included:

• Information and manual guides for everything related to the Cochlear Implant
• Two processors: one which I will be utilizing, and another as a backup
• Mini microphone: which can be used to hear a speaker directly to my cochlear implant (an FM system for cochlear implants)
• Phone clip: which can be connected to any bluetooth device and will be directly streamed to my cochlear implant
• Dry-kit: help keep the moisture out of the cochlear implant
• Rechargeable and disposable batteries with a charging kit
• Two different remote controls: used to control the volume, sensitivity, program settings and other things  
• Nucleus Aqua: waterproof sleeve, coil and magnet that can be worn and submerged in the water
• Backup pieces: magnets, coil, disposable battery pack, batteries, microphone covers, etc.
• Implant cases: watertight case, travel and everyday case

Anyways, enough about the kit and all!  I know you all are waiting to hear the details about the activation appointment. Dr. Cain proceeded to get everything set-up to activating my cochlear implant.  The cochlear implant processor was plugged into the computer and put onto my head.  This took awhile as my hair was not cooperating! We had to put on a stronger magnet and clip the computer cord to my scarf.  I think I’ll need to get some kind of ear hook or earmold to help hold the implant in place.  I think my ears are rather too small for the cochlear implant!  

Dr. Cain set the impedances which are measurements of the electrical resistance between the individual implant electrodes. She set up the sound levels where I had to listen for beeps. As she was setting everything up, I heard a couple of beeps.  When I shared that I thought I heard beeps, Dr. Cain was shocked and said that it’s rare for people to hear those beeps during the initial activation. I looked over, and I saw that my mom was in tears.  I think these were tears of relief.  Remember I shared in the past that she was not thrilled with the idea of my getting an implant, and she became emotional before the surgery.  I wasn’t feeling emotional, but I was kind of excited that I could hear those beeps.  We proceed with the setup. I took out my left hearing aid so I could focus with my right ear.  I had to report how many beeps I heard while Dr. Cain was testing me.  I was given a card that showed a rating scale of loudness: 0-10, 0 being nothing and 10 being too loud. My job at this point was to listen for the beeps at different frequencies and determine the loudness.  I had to tell her when each beep was too soft, soft, comfortably soft, comfortable and comfortably loud.  Our goal was to reach to 6: comfortably loud.  It started out with really soft sounds and gradually increased loudness.  This took awhile.  Once  all electrodes and we were set we were ready to go!  

I have to share with you before continuing my experience: my activation experience is NOTHING like the emotional videos you see on YouTube. Life is crazy busy right now; I will be uploading my activation video really soon as I need to do some edits and add the captioning for accessibility! 

Before turning on the implant, Dr. Cain explained some of the things that I could possibly experience, such as loud noise and sounds from the background, including humming from the lights and the ventilation system, or people walking down the hall.  I was getting a little nervous.  She shared with everyone that they had to remain quiet and for me to choose the first person to speak; I picked my mom.  Mom moved closer to me.  Dr. Cain turned on the implant, and there it was! EVERYTHING WAS SO LOUD!  I could hear a lot of squealing and beeps.  I wasn’t so sure about this anymore.  Mom asked how everything was sounding.  She started shedding some tears again.  I could hear her voice, but without  reading her lips, I really had no idea what she was saying.  It was so overwhelming and confusing; I depended on the interpreter more. I kept looking back and forth from the interpreter and everyone else in the room.  It sounded like a bunch of distorted sounds and like “wah, wah, wah, wah, wah….” from Charlie Brown. Everyone took turns around the room talking.  Everyone sounded the same; Peter, Marla, Dr. Cain and the interpreter sounded like my mom when they talked.  Everything they said sounded like “wah, wah, wah, wah”.

“Hey Kayla!” (wah, wah wah)
“Can you hear now?” (wah, wah, wah, wah?)
“What does it sound like?” (wah, wah, wah, wah, wah?)
“This is crazy!” (wah, wah, wah wah!)
“I love you!” (wah wah wah!) and so on…

The squealing sound was still there and I was already feeling overwhelmed.  Dr. Cain made some adjustments and showed me how to use the remote to control the volume and sensitivity.  The volume is the sound levels of spoken language and sounds,  whereas the sensitivity controls the “bubble” around me.  I’m only hearing sounds that are within the bubble;  the  lower the sensitivity, the smaller the bubble. The higher the sensitivity, the larger the bubble around me, which means I can hear things further away from me.  At this point, changing the volume or sensitivity doesn’t do any good.  I just wish I could control this squealing sound.  I’ll just deal with it and hope that it will go away with time.   

We started playing with different sounds in the room.  Dr. Cain took her pen from her desk and started clicking it.  I could hear it: CLICK, CLICK, CLICK… She knocked on her desk and it sounded like the pen: CLICK CLICK CLICK CLICK. She asked mom to clap her hands, it sounded like the pen and the knocking on the desk: CLICK CLICK CLICK CLICK. I still wasn’t so sure about this.  This isn’t what I was expecting.  I was expecting robotic sounds. I wasn’t expecting all this squealing.  I knew at this point, I was going to have to do a lot of work.  

Mom got a text message from dad asking how things were going.  While Dr. Cain was doing some paperwork on the computer, mom gave me her phone to text my dad back. While I was texting back, I was hearing all these clicking sounds.  It sounded like Dr. Cain was typing.  I finished texting and looked up, all the clicking sounds stopped. I was confused for a minute and I caught a glimpse of mom asking Peter if he wondered I could hear the clicking on her phone.  I looked down at the phone (keep in mind that mom has an older phone with a screen that slides and a QWERTY keyboard pad that has actual buttons) and noticed that I was the one making all those clicking sounds.  When I made the connection, I started typing again and I moved along with the typing.  Guess the answer to mom’s question was, yes, I did hear those clicking sounds. CLICK CLICK CLICK CLICK CLICK. Everyone in the room is already giggling at me.  I think I’m going to be the one entertaining these folks. I felt like that I was in a Morse code world. I’m going to have to train myself to convert these Morse code clicks and beeps into actual words and sounds; this is definitely going to take a long time.

We all continued to take turns talking and making random sounds in the room. Dr. Cain continued to discuss what actions needed to be taken from here on out.  I put my left hearing aid back on.  Everything was confusing and overwhelming;   two different types of sound were coming into my head.  The squealing and beeps came through the cochlear implant, and what I consider normal sounds were coming into my left hearing aid.

We left the appointment and headed out to grab some dinner.  Mom, Peter and I went to a Japanese Hibachi-Style Steakhouse.  I know what you guys are thinking… “Really?!  To THAT kind of place where they cook food in front of you?  The sounds from those knives and entertainment are going to be overwhelming!” You’re right! I wanted to take a crazy risk and eat at one of my favorite kinds of restaurants, plus we were starving!  On our way out to the car, everyone was asking if I could hear things. “Can you hear the car? Can you hear the birds? Can you hear the people over there? Can you hear? Can you hear?”  At this point, I was frustrated because the answer was always “NO!” I can’t distinguish these sounds yet.  This is my point- it’s not a magical thing where once the cochlear implant is activated, everything is perfect.  Everything I hear sounds the same.  I can hear that  sounds are happening, but nothing makes sense.  It’s important that you allow  cochlear implantees  to ask what specific sounds are, but don’t ask them if they hear certain sounds.  At this point, and for a while, it’s probably going to be really hard to distinguish sounds.  We’re not sure what we’re supposed to hear.

I got into the car and decided I would drive. When  I started the car, it sounded strange. I started driving, and all I could really hear was a bunch of distorted sounds and squealing.  Obviously, I was feeling uncomfortable.  I was already getting a headache.  As we were driving towards the restaurant, I was trying to see if I could identify any sounds.  We come to a stoplight waiting to take a left.  After a few seconds of waiting, I started hearing this CLICK-CLICK, CLICK-CLICK, CLICK-CLICK.  I looked around and the clicking sounds matched the lights from the blinkers.  I associated the clicking sound with the blinkers, but again, these clicking sounds sounded the same as the pen clicking, the keyboard clicking, the knocking on the wall, and the tapping on the desk.  We arrived to the restaurant and we had to pay for parking.  I listened carefully for the coins to make noise as we dropped them into the meter.  I could hear  click! click! click! each time we put a quarter in the meter.  It was hard to hear these clicking sounds as there was so much happening around me (cars driving by, people walking and talking, and all this environmental sound). We walked towards the restaurant and everything continued to be distorted. After arriving to the restaurant, we were seated at our table.  I noticed I was working harder at lip reading and I was asking “what?” more often. Mom and Peter had to repeat things for me. I tried to take off my left hearing aid to see if it would make a difference, and that was more challenging.  I kept my left hearing aid in to help feed my brain what the right side was getting.  It doesn’t really help when you have Japanese waiters taking your orders or chefs cooking for you. Everyone’s speech was confusing!  I was excited, in a curious way, about this though! I wanted to see what it would be like when they started cooking in front of me.  The chef came out and started preparing our meals.  First he  did a mini show with his knives.  All I heard was click-click-clack-click-click-clack-clack-clack.  He turned on the stove and started cooking the shrimp and onions.  He started cooking the meat.  After watching carefully, I started to hear the sizzle, /shhhhhhhhhhhhhhhhhh/, from the steak as soon as he put it on the grill.  It was pretty fascinating to match the sounds with the cooking, even though everything sounded the same.

When we arrived home from dinner, I was exhausted.  I went to bed and was out cold.  The next morning, I woke up and got ready for work (I’m teaching a pre-school signing classroom this summer). After I showered and dried my hair, I put on my cochlear implant (the nice thing about getting ready is the quiet environment.  I can’t wear the cochlear implant while fixing my hair. I’m used to wearing my hearing aids while getting ready). The squealing was still there and I was already annoyed with this.  Each time I put on the cochlear implant, I winced and was really tempted to take it back off.  I really didn’t  know how I was going to bare this.  I wanted to wear a new shirt I recently purchased, but it was still in the bag.  I went through the bag and pulled out the shirt.  The crinkly sounds from the bag were so loud, it made me cringe.  I really hated this sound.  After I realized it was so loud, I thought I was going to wake up Peter.  I quickly looked over and he was still sleeping.  WHEW! I know this kind of sound isn’t really that loud, but it was loud to me. I went to the closet to get a cardigan.  As I was going through my clothes, the clothes hangers were rubbing against the rod making these loud “SHHHHHHHHH” noises. I quickly looked over at Peter again to make sure it didn’t wake him up.  At this point, I had to keep reminding myself that these sounds are, in reality, quiet, not loud! I still didn’t like moving the hangers on the rod; instead, I literally took the hangers off the rod and put them back on the rod as I was going through my clothes.

Throughout the day at work, I had to tolerate the squealing sounds.  I work with 9 pre-school kiddos  this summer, and the noise they make, especially while playing with toys, was unbearable!  I was already counting down the minutes to get out of there.  I took some ibuprofen for the headache I got.  This was my third headache  since activation (less than 24-hours).  The best way to explain all the squealing is to compare it to a hearing aid that’s turned on while your hand cups it, causing a lot of feedback. Imagine having that hearing aid feedback right next to your ear,  combined with distorted sounds and beeps all day.  This is how I was hearing all day and I really wanted to take off the cochlear implant.  I was starting to slowly hear the difference between voices and sounds.  If I focused enough, I could hear  voices,  sounding like “wah-wah-wah” and the  “click-click-click” sounds.  I’m so fortunate to have my own ASL interpreter in my classroom, and the staff and students I work with all sign.  I was also struggling to keep the cochlear implant on my ear.  One of the audiologists I work with gave me some double-sided sticky tapes for hearing aids.  I was able to tape the cochlear implant onto the side of my head above my ear.  It stayed on and I wasn’t worried about its falling off anymore.  As soon as I got home from work,  only a couple of hours later (summer school only runs from 8:30-1:30 daily), I crashed.  I was exhausted.  It felt so nice to take off my cochlear implant and just enjoy the silence. I was really missing my right hearing aid.  I started questioning what I did and why I decided to get the implant.  I really had to keep pushing and remind myself that this was only day #1.

I noticed that I could detect  high pitch sounds.  That evening, I could tell when the water was running.  I started preparing our dinner, and I could detect these high pitch sounds I’ve never heard before: salt hitting the bowl makes these “shh-shh-shh” sounds.  I started getting carried away with all the different spices in my cabinet.  I shook them on my left side with my hearing aid on and could barely hear it.  I shook it at an arm length, and couldn’t hear it through my hearing aid but could through my cochlear implant.  It was pretty fascinating.  While I was going through different spices, Peter came home and caught me.  He was a little concerned that I was shaking my spices, until he  realized why I was doing it.  By the time I shared with him that the spices made “shh-shh-shh” sounds, he pointed out that there were red-pepper flakes all over my right shoulder.  Good thing the recipe calls for red-pepper flakes.  I brushed them off my shirt and into the bowl and heard another “shh-shh-shh” sound.  I looked down as I rubbed my hands on my shirt and realized that it makes a sound.  I knew everything has a sound of its own, but these are sounds I’d never heard, even with my hearing aids on.

After dinner, we  watched TV in the living room.  All the noise and talking from the TV were annoying.  I was trying to match up all the spoken language in the show with the captioning.  Again, after focusing so much on it, I was able to match the “wah-wah-wah-wah” sound with the captioning.  Nothing was really making sense.  Peter got up and went into the kitchen.  I started hearing some water, and realized that he was filling up the Brita pitcher. I was amazed that I could hear the water running from the living room. I’ve heard the sound of water before, but not that loud.  It felt like the water was running right next to my ear.

The next couple of days continued to be a struggle with trying to keep my cochlear implant on my ear and getting used to sounds. There have been quite a few tears where I become so frustrated with everything.  I hated wearing the cochlear implant.  I hated that nothing made sense to me.  I hated that the sounds were nothing but constant squealing, beeps and clicks.  It’s true when they say that this is the biggest hurdle of getting a cochlear implant.  My brain is feeling so agitated and exploring these new sounds.  It really has no idea what to do with it all.  At the same time, it’s been pretty entertaining exploring some of these high frequency sounds.  One thing I really hate about the cochlear implant is the sounds of plastic bags (trash bags, ziplock bags, paper bags, potato chip bags, grocery store bags, any bags-you name it).  It sounds like metal screeching on metal.  That’s the best way I can explain it.  It makes me cringe every time!  I noticed that I’ve been tired a lot more than usual.  I’ve had a nap everyday for about an hour or so. Looks like my brain is working so hard  trying to make sense of everything that it’s tired!  I discovered my most comfortable spot and that is in the car.  I liked being in the car with the windows down while driving.  It seems cancels out all the squealing noise. I like having the fan blowing near me as well.

Another favorite sound discovery I made was while I was at Tropical Smoothies with an  audiologist/coworker of mine.  While we were sitting down in the corner of the restaurant catching up on things, I heard a lot of sounds, like the blender, the cash register opening, and so on. But the one thing that stood out was when I heard a really loud “shh-shh, shh-shh, shh-shh” sound.  I knew it was something, but I couldn’t locate it right away. I looked around and saw that one of the workers was sweeping the floors on the other side of the restaurant near the bathrooms.  I just can’t get over how I can hear these high frequency sounds so loud and clear.

Here are some of my SnapChat photos of my sound discoveries:

Photo #1: "These spices make a lot of LOUD /shh/, /shh/, /shh/ noise!! What?!
Photo #2: "Oh. My. GOD! These crinkle sounds are making me cringe! #IHateThis!"
Photo #3: "These people sound so strange...Chipmunk voices!"
Photo #4: "Somewhere in these trees are some noisy birds!!!!!!"

Continuing the road to recovery

I know it’s been awhile since my last post.  Things have been busy on my end. Each day became better!  I’m starting to get used to hearing out of one ear. To this day, my incision is itchy, my ear is numb and I’m still experiencing a ton of ringing in my ear. I’m at the point where I’m just dealing with the ringing rather than making a big deal out of it.  There are times when the ringing gets really loud and it drives me crazy! Unfortunately, there’s nothing we can really do to minimize the ringing. There are a couple of headaches here and there. I use cocoa butter on the incision to help relieve the itching and Advil is my best friend when I get headaches.  It takes about 30 minutes for the medicine to work and my headaches are gone.  I’ve had two incidents where I’ve accidentally hit my head on the car as I was getting into my seat. This really hurt, gave me a bad headache and made me a little nauseous. Go ahead, call me a clumsy klutz!

Speaking of getting in the car, I finally got back into the groove of driving on my own again without becoming nauseous or dizzy, getting headaches, or anything.  Let’s see…in my last post, I discussed my first week recovering which was dated June 13-20 (Monday-Monday).  That following Wednesday, June 23, I got to drive a little bit around town.  I was feeling pretty confident and only struggled looking towards the left side as it was still tight around my right ear. Looking into my blindspots is when I’m feeling the skin stretch! This is going away each day.

I completed all of my work duties for the end of the school year.  Peter drove me to several schools so I could say my good-byes, pick up amplification equipment, clean up my desk area at the office and complete my end-of-the-year checkout with my supervisor.  I passed with flying colors!  I was happy to see some of my coworkers and when I got to my desk at the office, I got a little surprise!  Some of my coworkers boxed in and decorated my desk; they even had a little “Electrode Express” crown for me to wear.

I know I got really tired working for a couple of hours and being in the car for awhile.  I learned that I was becoming tired easily, not only because I was becoming busy again, but because I’m having to work harder to concentrate on conversations using one “good ear.”  I was telling my mom about this and she shared how it reminded her of how I came home from school at a young age.  I was exhausted, because I was concentrating very hard, so I could understand spoken language and follow the sign language interpreter  in the classroom, and learn new information.  

Post-Op Appointment

Thursday, June 24, I had my post-op appointment in Baltimore with the surgeon.  I wasn’t feeling 100% confident in making that drive myself and Peter had to work.  Fortunately, Marla was able to take me.  It was a fun mini-trip to Baltimore with her!  We got to catch up on things.  After arriving to the outpatient center at Johns Hopkins, Dr. Della Santina met with me.  He looked at my ear and decided to pull out the rest of my stitches.  The bruising was slowly going away.  I got to watch him on the screen.  It looks like there’s a camera on his surgical head-light or ear scope.  I got to see inside of my ear, which meant I got to see my eardrum again (by the way, my ears are very clean!)  He had to check my balance system in my ear.  I HATED THIS PART!  His assistant did this prior to coming in, and he did it for the second time.  He asked me to look at his nose, and while I did that, he grabbed my face and jerked it to the right, then the left, then the left again, then right, etc. I wasn’t allowed to take my eyes off his nose.  He was able to determine my balance doing this.  I got a headache after this as I was still struggling with sudden movements.  We continued to discuss everything, including how I was feeling.  His instructions were to continue cleaning and taking care of the incision, take it easy, especially with driving, and keep an eye out for symptoms of vertigo. In a couple of weeks, the incision will be completely healed and the activation will take place on July 12!

By the way, he said the ringing in the ear should go away when the implant is activated and the numbness could last about a year.  

I took it easy the next few days. Peter continues to learn a lot of new signs in order to better our conversations–he continues to amaze me with his motivation and support!  I got to FaceTime with some friends, had some visitors from my Gallaudet ladies and got to have a movie marathon.  It was much needed!  I got out of the apartment more often, and went to the pool.  I couldn’t get my hair wet, but it was nice to enjoy the beautiful weather.  Things were getting better each day.  I wanted to experiment with my implanted side.  I took out my left hearing aid, and put on my right hearing aid.  I couldn’t hear anything.  Peter said my name over and over again, louder each time.  By the time he raised his voice, almost as if he was yelling, I was able to hear a quiet, deep, muffled sound, “BABE!” It was so weird!  It’s truly amazing to hear that the surgeons today try to preserve whatever hearing you have left when doing the implantation, not that I have a lot of natural hearing left!

Deaf Education Conference

recently went to Richmond, Virginia, for a conference for Deaf and Hard of Hearing teachers.  This conference is called ODUP: Opening Doors Unlocking Potential.  As part of this conference, we provided a day for parents and students who are in high school; this was called OD2LBHS (Opening Doors To Life Beyond High School).  I was asked to open up the conference by presenting my experiences as a Deaf individual and how I transitioned to college and into the real world. Fortunately, this blog helped guide my presentation.  I got to share with parents, teachers and Deaf/Hard of Hearing high schoolers my experiences in school, what accommodations and amplification equipment I utilized, my IEP, transitioning to college, jobs I worked, how I learned to drive, advocating and receiving accessibility in the real world, etc.  

This was a fun conference as we were able to network with other parents and teachers from all over the state of Virginia.  I got to spend a lot of time with my undergraduate cohort from Radford University and see familiar faces.  I feel that this was a special conference as I was there with my own Deaf/Hard of Hearing teacher, Miss Connie. I like to think of this conference as a mini reunion for all Deaf Educators, where most of them learned about my cochlear implant decision and journey.  We also continued to learn new methodologies and information regarding teaching Deaf and Hard of Hearing students.  

A funny story: while we were at the conference, I was really curious about where the magnet was on my skull. My coworker, Karen, used metal things such as hair clips, bobby pins, and paper clips to see if the magnet inside would attract it.  It all failed.  We explored the different booths that were set up outside of the conference (information booths for Deaf Educators).  There was the booth from Cochlear Americas (the company I decided to go with for my cochlear implant) and they had their demo kit.  Their demo processors were magnetic.  I tried using their demo processors but I felt awkward trying to locate the magnet in front of everyone so I put it back.  After the conference was over, Karen and I decided to go to the craft store to see if we could find a magnet that would attract to it.  Using an unraveled magnetic strip, she moved it across my head but it didn’t stick. Hesitantly, we decided to use super strong magnets.  Karen moved the pack of magnets across my head and it finally stuck to it.  HOUSTON! WE FOUND THE MAGNET!  I wanted to see it for myself, so we decided to get the pack of magnets and get some minion ribbon (there’s a minion obsession among my supervisor and coworkers).  When returning to the hotel, we took the ribbon and tied it on one of the magnets, making a bow.  At first, it wasn’t sticking to my head and it was repelling.  We flipped the magnet around, fixed up the bow and it finally stuck to my head.  This was really exciting! I even got pictures!!! 

Beach Trip

After returning from Richmond, I only had less than 24-hours to rest before Peter and I took off to Delaware for our vacation.  We decided to spend the 4th of July holiday at Bethany Beach with his family.  This was a wonderful trip and I was finally feeling relaxed!  I do have to share one thing that I struggled with while we were visiting the beach.  I got to spend time with Peter’s family, and met new faces, but none of them signs..  It was really hard to follow multiple conversations, especially with one ear.  Peter tried hard to sign and keep me informed, but it just wasn’t enough. Even though it was hard, his mom and sisters entertained me, asked me a lot of questions regarding the implant process, and how to sign things. While we were at the beach, of course I wasn’t wearing my hearing aid, but his nephews and sisters continued to ask how to sign things.  It’s really nice knowing that his family is interested and willing to pick up on some signs to better communicate with me.  I was getting exhausted again from following conversations; after everyone left, I got to rest for awhile.  We got to spend the fourth of July on the beach, but our firework show was cancelled due to the yucky, rainy weather.  We all decided to spend the evening hanging out by the beach, but I left early. I found it hard, and almost impossible, to follow conversations in the dark, with the waves crashing onto shore, and with one “good ear”.  Peter was feeling badly about my not being able to be part of the conversation, so the group came back to the beach house where there was light and I could be a part of the fun.  In spite of the challenges I faced, this was still an amazing trip. Our firework show was postponed to the next night, and was shot off about half of a mile from where we sat on the beach. I got to experience watching them on the beach with one hearing aid in,  and it sounded like popcorn popping in the microwave.  I was able to relax on the beach, got sun-kissed, swam in the ocean, saw dolphins and horseshoe crabs (I had a horseshoe crab crawl across my feet and I freaked out!), explored new places, ate delicious food and, of course, my all time favorite, SHOPPED!   I was growing to like and become more comfortable with Peter’s family.

We’re back home now and as I type this blog, I catch myself reminiscing other things that I discovered.  

I feel like I’m able to “fully understand” how my unilateral students feel.  I would have to say localizing sounds is really challenging.  I’m always looking to my left side when I hear something or when my name is being called.  Sometimes, the sounds are coming from my right side, but I only hear it on my left side.  One night, Peter and I were on the couch watching T.V. together.  He was sitting on my left side (as usual, I’m always sitting on someone’s right side because of my “good ear” facing them) and I must have been super focused with the T.V. show.  I don’t remember his getting up to go into the kitchen.  When he called out for my attention, I looked over to my left and he was gone.  He called out again, and I looked over to my right and there he was, standing right there.  Another time, when I went out on a walk and I heard sirens coming up the road, I looked over to my left and realized that the ambulance passed me on my right side.  

Another thing, I’m not sure how many people recognize this, but I was Skyping with my mom one night and she shared with me that there’s a little decline in my speech.  I’m getting a little paranoid, but I think this is to be expected?  She said that it almost sounds like I have a cold and am missing on pronouncing high frequency sounds, such as /s/, /st/, /ts/, /ct/, /z/ sounds when I talk.  I asked a couple of others if they noticed anything, and after I mentioned it, they paid attention more and said the same thing.  I’m not sure that this is a big deal though…

Now it’s time to wrap up this blog entry, and start focusing on some lesson plans for summer school.  I’m excited to be teaching preschool this summer!  I have 9 signing kiddos on my caseload.  Our theme is “Going for the Gold: Summer Olympics.” I have so many ideas bouncing around my head and I need to jot them down before they escape.