Meet Alli.
If there’s one thing that I love more than my bird and books, it’s sharing my story in the hopes that I could provide a sense of comfort and relief to someone going through hearing hardships alone. I’m Alli, 29, and profoundly deaf with a cochlear in the left side.
It was One
It was at three that I was implanted in my left ear with Advanced Bionics. Before that, profoundly deaf. There was a period of time upon being born that I barely had some semblance of hearing, but it was wiped out shortly after by an ear infection. Since then, my parents were fired with the determination of having me grow with verbal access, a public school environment, constant access to accommodations and resources and an amazing support system. I was encouraged day after day to grow independent of my hearing and advocate not only for myself but the people I’m surrounded by. Since then, my confidence had grown tremendously., I learned to set aside my worries and hesitations and instead focus on my goals and dreams of becoming independent, an artist and to comfortably explore the world.
And Then There Were Two
By twelve, word went around that people were getting bilateral implants, some, implanted at a young age, were getting their second one upon their teen years. At thirteen, I finally got mine through Advanced Bionics. My excitement was unparalleled, I dove into hours of research, I read stories of other people’s experiences, and a speech pathologist was set up for post-activation. Activation day however, did not go as expected. What was supposed to be a slow and easy transition for my right ear to experience such senses for the first time, was instead thwarted by an unforeseen start. All sounds, all the electrodes, turned on at once.
The experience was undefinable. I took the implant off after the appointment and for a short time, I refused to touch it. However, after some gentle coaxing and a lot of willpower, I slowly adjusted again, slowly evolved, but the cochlear didn’t. Two years of improvement attempts passed, two years of subtle pain and discomfort, knowing that something was wrong passed, two years of audiologists denying my claims, stating it was psychological trauma, passed. Then, one audiologist finally listened and through a CAT scan, I learned that the internal device was broken upon the day of implantation. Shortly after, Advanced Bionics announced their Harmony recall and I had it removed with no replacement.
No Longer Either
Everything was okay again. In fact, I was much happier than I had been with two devices. The experience was extremely discouraging but I never let it deter me from encouraging my other deaf friends to get bilateral implants if they asked. I was already doing amazing with just one ear, already excelling beyond what I could have asked for, having a second one would have simply been an extra asset for me. Since then, I’ve traveled, learned languages, lived abroad, grew my pool of art clients, went to concerts, and stepped myself into some very uncomfortable situations for personal growth. I was thriving and fiercely independent. But by 24, my left implant failed.
As alarming as this would have sounded, I was enthusiastic. This meant a new opportunity, a new company, a new device. My implant was far outdated, there were no opportunities to upgrade and my admiration for AB decreased day by day while I watched people around me excel with their new Cochlear branded devices. Due to insurance complexities and surgical failures, I was rendered deaf for several months. It was the longest I’ve gone without access to my familiar environment. With fear that I’d lose all the hard work in the clarity of my voice or lose my sense of hearing balance, I worked with my friends and family to ensure I never lost my momentum, that my voice remained clear, that I’m reminded of what I could and will hear. I just needed patience.
But Everything is Okay
The surgery was successful (I cried with joy and excitement as soon as I woke up), the activation was successful, my hearing range had grown tremendously and my confidence exceeded beyond what I could have ever imagined. As long as I maintained confidence and spoke up when I needed accommodations or asked one to repeat themselves, I was doing things that were a world of struggle to me before. I was on the phone yapping for hours with my friends, I was attending voice-only meetings for work, I was comprehending foreign languages better, and I heard new lines in my favorite songs.
Suddenly, I realized that I needed to experience a bumpy road of struggles and insurmountable joy in order for me to get to where I am. I wouldn’t change what happened then because now, I’m an artist and designer exploring the world and actively finding ways to put myself in uncomfortable (hearing) scenarios in order to grow. I gather a handful of deaf jokes daily, I educate hearing people with artistic, visual scenarios that help them better comprehend the lack of a sense that is unimaginable to them and I enhance my experience by listening to new things day by day. Because if I have this for the rest of my life, why not make it fun?
Thank you for taking a few moments to read about my journey, and invite you to join me as I continue to explore the world and seize joy where I may find it. My story isn’t over yet, but I would love to hear yours. Instagram: @alli.matcha
