Life with a CI

Travel. Somewhere deep in our collective DNA is the urge to see new places and experience new adventures. Travel is an education like no other, and the more of this beautiful planet we can see, the more we can appreciate all that Earth has to offer.

I was born hearing, but as a preemie a two pounds, seven ounces. I lost my hearing due to streptomycin I was given at around 18 months of age. I was just starting to talk, saying words like “Dada, cookie, bye-bye.” But instead of talking more and more over time, I turned silent instead. I would press my ear to the TV to hear it. I was growing deaf in a hearing family.

Hearing technology, such as hearing aids and cochlear implants, help us hear our best, but hearing technology alone is not enough. There is a misconception that wearing hearing aids or cochlear implants is just like wearing glasses. Put them on and you hear clearly!

Ever get stuck in traffic and realize you are about to run out of gas? That was me a few weeks ago. As much as I was worried about running out of gas, I also feared that my cochlear implant sound processor would run out of battery life while I was stuck in traffic for three hours on a snowy night. That was when I realized that I was not fully prepared for any type of emergency.

It was a life-changing moment, hearing a doctor tell me that my little boy, barely 24 hours old, was probably deaf.

I was diagnosed with profound bilateral hearing loss when I was ten months old. I received my first cochlear implant in my left ear when I was almost two years old, and got the second one in my right ear at 11 years old. I was re-implanted on my left side in June, 2020, which overlapped with the COVID-19 pandemic. These two events turned the past couple of years into a great time of learning and growth for me. I am more self-confident than ever before.

My progressive deafness started twenty years ago when I was eighteen. By the time I was in my thirties, I had profound deafness in both ears. I wore hearing aids in both ears, and they were turned up very loud. When I decided to go ahead with cochlear implantation at thirty-nine, I had a lot of questions, more than my hospital had time to answer. Thankfully, my AB Mentors answered some of them by email, and they were a lifeline for me during this time.

I remember clearly the day my hearing aid audiologist suggested that I look into getting a cochlear implant. To say I was taken aback would be putting it mildly. I was hearing just fine with my hearing aids, as I had for thirty years. That was in 2012.

Having had a cochlear implant since I was thirteen months old, hearing and living with one is all I know. Now, at nineteen years old, I use a Naída Q90 in my right ear and a Naída Link CROS in my left. For those unfamiliar with CROS, it is a small hearing aid-like device that that I wear on my non-implanted left ear. It picks up sound from that side and delivers it to the sound processor on my right. This way, I can hear from all around me. I am currently attending Northern Arizona University, and come this Fall, I will be a sophomore.

As kids grow, they might become more selective and develop their own personal taste.
This year, to help you with this daunting task, we have asked some teens and young adults with hearing loss what they would recommend. These are some of their ideas.

My hearing loss journey began when I was only one month of age and had a high fever of 105 degrees for three days. I was very fortunate to have survived this illness, but I was left with severe hearing loss in both ears. In the early 1950s, I received my very first hearing aid at age three and started attending a special oral school for children with severe hearing loss in Phoenix, Arizona.

Our daughter Emmy was born with a profound hearing loss. Hearing aids were providing very little benefit and we quickly realized we needed a better solution. Our family decided that the right fit for Emmy was to pursue a cochlear implant.

If you are the parent of a teenager with hearing loss, you probably remember the beginning of the journey you embarked on when your child got diagnosed. You asked questions around speech recognition and development, you learned about hearing technology, you visited the audiologist, you equipped your child for school and extracurricular activities, and celebrated major milestones. Parents want the best for their children and inevitably remain their biggest advocates for life.

On the morning of July 3, 2017, after decades of reliance on hearing aids to help me cope with progressive, debilitating hearing loss, I began a new chapter in my years-long hearing loss journey when I received a cochlear implant (CI) at Massachusetts Eye and Ear Infirmary in Boston. The decision to take this step had been long in coming, my significant and stubborn ambivalence finally giving way to encouragement from my peers who had Cis, and my efforts to educate myself about them.

It was a minute before curfew in the aftermath of George Floyd’s murder, and I was anxious to get home. It had been a surreal Memorial Day week in Minneapolis: Entire blocks of the city, including a police station and a branch office of my employer, were looted and burned to the ground. Thousands of protesters blocked the freeway, and the National Guard had arrived.

When we received word that my daughter’s cochlear implant (CI) was failing, we were terrified. What would it mean for our daughter? She has had been doing so well. She received her first CI at age two. At that time, there was a huge gap in her receptive and expressive language compared to other children her same age. Once she was implanted and receiving weekly auditory oral therapy, she took off. I could see the language gap closing!

I’m 32 years old and have been wearing hearing aids since I was three. I also have a cochlear implant (CI). So, I’ve been fortunate to have both a hearing aid journey and a cochlear implant journey. For me, these two experiences have complimented each other in many ways. I hope my sharing my experience could be helpful for someone else who might be embarking on a similar journey.

I have been deaf since birth, but it wasn’t until the age of four that it was discovered. Thanks to the team of audiologists at the Policlinico Federico II in Naples, led by Dr. Auletta, I was diagnosed with severe bilateral sensorineural hearing loss. I was fit immediately with Phonak hearing aids and attended speech therapy for seven years.

As an ER nurse and a mum of three young, energetic boys, I know how important it is to maintain social distancing to support our medical systems during this pandemic. Everyday activities are being adapted, especially for me as a cochlear implant wearer. It’s been pretty crazy at our house, but that doesn’t mean the fun has stopped.

When I was 21 and in college, I suffered a sports injury. As a part of the treatment, the school doctor gave me gentamicin, a drug that I found out later was ototoxic and can cause permanent hearing loss. At first, I noticed the ringing in my ears. But by the time my hearing was tested, I was diagnosed with bilateral sensorineural hearing loss that sloped down to 70 dB in the higher frequencies.

My daughter was born profoundly deaf, and as we began to look into hearing aids and cochlear implants, I was thrown into a world I knew nothing about -- insurance. Sure, I had gone to doctors’ appointments, picked up prescriptions, and had been in the hospital when I had my children, but I never thought about insurance coverage.

Hearing aids and cochlear implants are life-changing solutions for people with hearing loss. But as many of those already using these devices will tell you, there are frankly still situations where even these amazing technologies aren’t enough to help them hear and understand speech.

I received my first cochlear implant (CI) in 2013 in my left ear and in 2018 in my right ear. But I wish I had gotten them sooner. I learned that this is a feeling shared by most people with CIs. When I asked why they waited, they said it was because all the unknowns of a CI overwhelmed them when making this decision.