****I recently did a personal narrative for one of my classes about my journey getting a second cochlear implant. I know I did an earlier blog about it, but this one is much less technical and to the point. It really tells the story from a more emotional perspective.****
Nonstop Pain: A Rapid Descent to Hell
It was a warm sunny, fall afternoon in October 2004. My family and I had just finished a fun photo shoot at the Emerald Square Mall and were walking out to the parking lot. Everyone appeared in good spirits, laughing and talking, until I felt a sharp pain pierce through my right ear, my only good ear, and down my jawline. As my body jerked in shock, I screamed and threw my processor to the ground. The pain continued for a few seconds before suddenly stopping. I had no idea what had just happened, nor would I figure it out anytime soon.
At the time, I was a petite 9-year-old in third grade with a profound hearing loss, simply going about her life. I went to mainstream school, had many friends, played sports, and enjoyed family time. Despite being born deaf, I had lived most of my life hearing with the help of a Cochlear Implant, a device that stimulates the auditory nerves in my cochlea to produce sound. During that time, I only had one implant on my right ear, and used a hearing aid on my left ear. My hearing began to rapidly deteriorate on the day of the photo shoot. My implant simply started failing on its own, but it would take my family and I two long months to figure it out.
After the incident at the mall, my mom took me to see my audiologist, Toni, to reprogram my processor, which is the external part of my CI that sends sounds to the implant that, in turn, produces sound that I can understand. Toni hoped to adjust the sound levels to stop the pain, but she and my speech therapist, Diane, discovered that my hearing was actually getting worse. I was missing sounds, misunderstanding words, and the pain was becoming frequent. Eventually, Toni managed to program my processor to a sound level that proved somewhat comfortable and suitable for me to hear most sounds. Yet, the pain continued.
I was losing my hearing.
My mom and I were driving home one night after one of our frequent trips to see Toni. I was falling asleep while watching the Princess Diaries II on my DVD Player before a sudden, but much more intense sharp pain seized my right ear and jaw line. I erupted into a hot mess of tears and started screaming. The pain was becoming unbearable. My mom immediately brought me to a nearby emergency room. As usual, the pain eventually subsided. The ER doctor checked both of my ears, but saw nothing: no redness and no infection as everything appeared normal. Nevertheless, the ER doctor made a consultation phone call to my CI surgeon, Dr. Cohen, at New York University Medical Center.
While lying on the hospital bed, I asked my mom “Will the pain ever go away?” Despite her uncertainty, my mom remained optimistic and responded, “Soon, I hope.”
A few moments later, a nurse came in and told my mom that Dr. Cohen wants to give me antibiotics because I might have a possible inner ear infection. After I took the first dose of medication, I went home. Luckily for me, I got to skip school the next day, relax, and watch That’s So Raven and Lizzie McGuire. I was simply glad to miss a day of school.
However, I failed to recognize or understand that my hearing was fading away, as was I. In school, I started missing things, zoning out as my friends excitedly talked about weekend sleepovers, and was slowly losing touch with the hearing world, slipping away into an isolated darkness.
Since Toni could not figure out the problem, she sent a representative of Cochlear Americas, which manufactures cochlear implants, to investigate. The representative confirmed our worst fears: my implant was failing. I needed surgery soon.
On December 21st, 2004, I had my second operation. I was re-implanted on the right ear, and received a new Cochlear Implant on the left. My parents and I decided that since I was already getting surgery for my right, I might as well get the second implant for my left.
My surgery that was supposed to last four hours ended up lasting a grueling fourteen hours. Dr. Cohen and his team of doctors struggled to find a workable spot in my common cavity that did not cause facial nerve stimulation that would leave my face twitching, or worse, paralyzed. After numerous attempts, they finally placed the implant in a spot where this would hopefully not happen.
After the surgery, my doctors weren’t even sure that the re-implantation of my right ear would work. They told my parents I may never hear again. Or at least, not nearly as close to the hearing I had before. The implantation of the left ear was only expected to give me a small amount of hearing.
Over the next two weeks, especially during Christmas, I slowly began to fully understand the seriousness and sadness of my situation. As my cousins and younger sister ran around my house giggling and playing with their new gifts, I retreated to my bedroom, where I watched Lizzie McGuire shows with closed captions. I did not feel like my usual playful, boisterous self. Everything felt dark, sad, and lonely. I desperately wanted to run around, play, and hear the laughter and vibrant spirit of the Christmas season.
Finally, I returned to NYU to meet an audiologist who would turn on my new implants. Unfortunately, neither activation worked.
I returned to school the following week still trapped in a dark, quiet world, seemingly void of life and emotion. At home, my mom made me try on my processor to see if I would hear anything. Many attempts were made without success. I was feeling discouraged. My parents were feeling discouraged.
I was facing a life without sound. My parents were facing a life with a daughter who may never be able to hear her own parents’ voices again.
Then one day, as I was lying in my bed dreaming of simply laughing and running around with friends, my mom had me try on my processor again.
Suddenly, everything lit up. I felt alive. I could finally hear the sound of the air, my mom’s anxious breathing next to me, and a car zooming past my bedroom window. I saw and felt happiness for the first time in weeks. I was alive.
Neither implant has failed since, and continue to bring sound, vibrancy, and joy to my life.