Dear Dr. Chi,
When I was born with a severe hearing loss in 1996, the Universal Newborn Hearing Screening was not yet federally mandated, so I never had a hearing test done in infancy. I hit all my milestones on time and while I never crawled, I was a very fast bottom scooter. For about 3 years, everything seemed fairly normal. As I approached the age of 3 and a half, my mother and grandmother noticed that I didn't respond to my name normally and that I always turned my right ear toward the speaker. My dad and pediatrician thought it was some kind of behavioral quirk. At my mom's insistence, we were referred to the audiologist for hearing tests that showed I had moderate-severe bilateral sensorineural hearing loss. Naturally, my parents were devastated and they were told I'd lose all my hearing by the age of 18. That's a tough pill to swallow.
They ordered me these purple hearing aids with these clear ear molds that had rainbow sparkles in them. The hearing aids helped so much! I wore that pair until about 2006 when it was decided that I needed stronger hearing aids.
This time, they were royal blue and silver and I really appreciated their galactic effect.
Then, in late 2009, everything changed when I lost the remainder of my hearing in my left ear. We met with you and you recommended that we try new hearing aids to make sure we were maximizing my hearing before I got cochlear implants. We were able to maximize hearing in my right ear, but all the hearing was gone in my left ear.
We started the process towards implantation: audiology evaluations, psychology evaluations, speech evaluations, meningitis vaccine, and CT scans before meeting with you again to discuss everything. I passed everything with flying colors and on May 18th, 2010, you implanted me with a Nucleus 5 internal device. On June 10th, the day after my 8th grade graduation, my left ear was activated. I heard immediately and speech therapy followed to learn how to listen with my bionic ear.
Then in July 2010, my right ear lost the remainder of its hearing. You approved me for a second cochlear implant and I underwent the bilateral implantation on August 31st, 2010, the day before my freshman year of high school. I ended up having lots of pain and some complications causing me to need to spend the night in the hospital, but you were so gentle and compassionate throughout the experience.
On September 28, 2010, my second cochlear implant was activated, ten years to the day of my initial hearing loss diagnosis. I have the best hearing I've ever had in my life. I excelled in mainstream high school, made the Dean's List in college, excelled in basketball and skiing, earned my 2nd Degree Black belt-R in Taekwondo, learned French, and I've traveled the world.
The seven years I've had these devices have been life changing. Even though you have to go back into my head on April 5th to explant and reimplant due to a failed internal device, I know it will be just fine because I trust you with my life! Together, we will get through it!
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!