Mom faced the possibility of my not having insurance at the end of my high school years.
Back then, the law was that children were to be covered by a parent’s insurance until age
eighteen. Nowadays, that age has increased to twenty-six. I was nearing my senior year in high school, which added an urgency to Mom’s desire for me to have a cochlear implant (CI). My hearing, by then, had worsened since my time as a volunteer for the Student Conservation Association (SCA). Thus began our medical journey at two hospitals. First it was Virginia Commonwealth University (VCU) in Richmond, VA. For some reason or other, Mom wanted to go to the University of Virginia (UVA). Off we went to see the upteenth and counting audiologist of my life. They gave me a look over and determined that I could be a good candidate for the CI. The next step was to see an Otolaryngologist.
Dr. Pettite was the eminent Otolaryngologist on staff. In the meeting with him, he reviewed the testing process and the operation of the CI. The steps, as reviewed by Dr. Pettite were as follows:
“First, we have to test your hearing to see if it is deficient enough for the CI process, then we test your auditory nerve via a needle inserted in the tympanic membrane. Don’t worry, this will be done with a topical anesthetic. The third step is to discuss the proper implant for your needs. CC, please review all the information I just told you.” I quickly provided a synopsis of what Dr. Pettite said by phrasing it this way, “Well, first, we do a hearing test. After, we put the needle in my ear <points at ear>. Then I get to choose which implant I want.” Mom says, “Isn’t she smart?”
Thus, I began the CI journey. First was the hearing test, which I knew I would fail spectacularly. Then the painful nerve conduction test. A nurse or doctor dropped some anesthesia in both ear canals. I still felt the needle in both eardrums. The testing starts on my right ear first. The audiologist begins tearing up because the results were coming back as a non-responsive nerve. At the time, in order to have a CI, a person had to have responsive auditory nerves. The audiologist rushed over to my left side to begin testing on the left. The nerve was still firing. The tension broke in the room.
The audiologist rushed to say, “Ok, we need to put a rush on this surgery because we don’t know how long the nerve will stay active. It’s best to schedule the operation as soon as possible while the nerve is still active. I will schedule a Magnetic Resonance Image (MRI)” as soon as possible.
With the results showing a normal brain scan, the surgery was scheduled for early summer. Mom wanted the whole process done over the summer so I wouldn’t miss school. The MRI is a counterpoint of my story.Mid-June of 1996, the operation was in the books. Mom scheduled the hotel room for the night before the operation to give us time to decompress and relax before the big day. Naturally, the operation was scheduled on a Wednesday. Hospitals and doctors prefer to do operations in the middle of the week because the beginning and end of weekends are typically busy with drunks, Motor Vehicle Accidents (MVA), or anything not scheduled. I remember having to fast the night before. I was super hungry since I was a teenager at that time. I wasn’t even allowed water! With a grumbling stomach, we drove to the hospital wing. I enter and start undressing as per protocol. IV is placed. I’m wheeled to the ‘stage’.
Four hours later, I’m wheeled out. I wake up, Mom is there.
“Oh my god, I’m so fucked up!” I then proceed to throw up a green substance in the bin they give patients. It was nasty. Mom asked the nurse, “Is it normal for her to throw up green stuff?” The nurse responds, “Well, sometimes patients throw up bile from the gallbladder instead of their stomach, most particularly if their stomach is void of any contents,” which mine was most definitely bone dry. I’m wheeled off to the final recovery room, which I was to stay for a few days. The first day, I could not move at all. There was a large bandage wrapped around my head, most particularly on the left side. The area behind my left ear felt tight. I didn’t touch it.
I slowly get better by moving around. Part of nurses’ jobs is to basically kick patients out of bed in order to get the blood moving. The surgeon made his rounds. Everything looks ‘copacetic’. I sleep some more. Then it was time to go home to Richmond, VA, which is about an hour away from Charlottesville, VA where UVA is. Upon arrival to our small townhouse across the street from my high school, Douglas Southall Freeman High School, I mostly rested for a few weeks to a month to give my skin time to heal. Before I knew it, the time passed quckly where the scar faded to an angry red line and my hair was starting to regrow behind my ear. A second visit was necessary since there was a ‘bubble’ of skin in the stitches, which caused a small bump. The resident cleaned it out and said for Mom to monitor it so it didn’t get infected. I wasn’t allowed to get that area wet for a few weeks so the skin was flaky by the time I returned for the activation of the CI. It was very itchy but I wasn’t allowed to scratch vigorously so Mom would catch me rubbing my head against various soft cloths in vain attempt to relieve the itchiness. Exciting times!
The activation of the implant a couple of months later was an amazing moment of my life. My brain overreacted a little and my eyes blinked a lot in response to the sound. It was simply overwhelming. Then the audiologist tested my hearing by speaking and signing. She said, “Ok, time to see if you can distinguish words without reading my lips.” This audiologist has a very loud voice. Conversely, Mom has a very quiet voice because she speaks from the chest and not from her throat. It’s kind of ironic that she has a deaf kid when her voice is light as a feather! With that in consideration, the audiologist went into the reception room to get the secretary who has a middle-of-the-road voice so that I could figure out how I wanted the implant and the electrodes mapped for real world use. Finally with a mapping I liked at that moment, a very tall, balding, and big shot graduate student at UVA walked into the small audiology room. I took an instant liking to him.
Before leaving the audiologist’s office, she said to me, “You need to start off easy with wearing the CI. It is a lot of sensory input for someone who has been deaf since birth.” Naturally, I didn’t listen to her and just wore it for long periods of time. Pretty soon, I was wearing it for every waking hour in my life. My brain was just absorbed with this new sensory information and I simply could not get enough. I was like a mouse with a cocaine filled water bottle! It is addicting although there are periods of time when quiet is welcome.
Bill is his name. He took us out to lunch so we could get me to experience the hearing world at its fullest. We went to Little Johns near a busy section of downtown Charlottesville. I was so taken aback by all the noise that I was just silent and absorbing these wonderful but strange sounds into my brain. When walking to the restaurant, I heard a ‘whiiirr’ noise. I asked Mom, “What is that?!” She replied, “I cannot believe you can hear that! That is what air brakes on certain cars sound like!” It was information to be filed away under ‘important’. After the three of us ate, Bill and I walked over to a bar with a pool hall. While playing pool with the cue balls clanging against each other, the jazz music in the background, and Bill’s voice were all wonderful, I had to keep a lid on my wonderment since I was with a very mature guy. He complimented me on how I was able to hear well only a few hours after activation. He was impressed! Part of me thinks he went with us in a real world stipulation to see if the CI was performing as it should and it was/is! UVA really does invest a lot in its patients. But, it can be a bit much at times.
We returned to the audiologist’s office to do a little more tooling with the mapping after my real world exposure, which gave me a lot of ideas of how I wanted the CI to perform. The audiologist went through all the frequencies of sound from loud to soft and I picked out the ones I felt most comfortable with. In other words, the CI is like customized hearing. The user can choose how they want the world to sound. Some people have highly sensitive auditory nerves. Others have practically dead auditory nerves. Mine is highly sensitive, which is why my CI is mapped for softness.
After the very first mapping, Mom took me to the UVA cafeteria. While there, a loud cafeteria cart was being pushed by one of the employees. It was on my right and I turned around to see what all the clanging was about. Mom says, “You are doing very well with the CI--you can hear!” Then Mom and I ventured outside to enjoy the weather. A woman behind me said, “Is that your wallet under the chair?” I replied, “No, it’s my Mom’s but it will be ok there until she returns from her walk.” Mom saw this interaction and mentioned that she thought that woman knew I had just gotten the CI from my newly shorn head with the CI magnetized to my head. In other words, maybe that woman was ‘testing’ my mapping to see how good it was at picking up speech. The reason this is a significant interaction is because I was looking away from the woman, yet was able to communicate well with her. At UVA, they do tend to test patients all the time.
Soon after, Bill and I started seeing each other. It would have never worked out since he was a good ten to fifteen years older than I was but I felt safe with him. He invited me to an apartment party at his place. I met a lot of UVA medical and audiology students. I even met the resident who stitched me up after the CI operation! We flirted a bit but I was really there for Bill. I did spend the night but we didn’t do anything other than just kiss. I think it’s mostly because I felt like a little kid around him and also a ‘patient’. However, he was very friendly and kind so I was safe with him, which is why Mom allowed her high school aged girl go to Charlottesville and have a party with real adults! The next day, we went swimming in his apartment pool. I disrobed in front of him. He “passed out” and fell into the pool. At one point, I was holding onto the edge of the pool and didn’t know where Bill had gone. I looked under the water surface and Bill popped up. He was a lot of fun while being a safe person for me to be around. We never had sex. Just fooled around a little. He was my first experience with puppy love and it was great being with him.
Bill had a CI he found from somewhere. He put it on my ear. It almost took my breath away since the mapping was for an insensitive auditory nerve. After I caught my breath, I said, “Why did you do that?!” He shrugged and said, “I thought it would do you good to know what it is like for some other deaf people with CIs.” That was quite a learning experience! Over the next few months, my head continued to itch as I kept fine tuning the map. Later, sessions were arranged with a speech therapist that specialized in new CI people. She really helped me better distinguish the sounds in order to understand speech to maximize the new found hearing ability. Amazing experiences with so many different people that helped me on my journey to hearing. Then, I was on my own.