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!!!!!!"