No one anticipates a life-altering experience when you’re a college student; living a seemingly carefree life with minimal interruptions, enjoying your youth and spending most mornings sleeping in and watching SportsCenter. This is the typical college student life I envisioned…but it wasn’t the one I lived.

I was a sophomore at Indiana University when my world shifted — and at the time, unbeknownst to me, the rest of my life would entail living with a slowly increasing hearing loss and eventually complete deafness.

For as long as I can remember, I’ve always had subpar hearing. Even in elementary school, I was aware that my hearing was different. When the school nurse would make her annual visit to the classroom, armed with a roll cart loaded with uncomfortable headphones and various audio testing gear, I’d take my turn in the chair and begin arbitrarily raising my hand. I had no idea my classmates tested before me had been doing this because they were hearing beeps and tones of various pitches. While this was certainly embarrassing, it wasn’t overly alarming. I grew up mowing lawns in a time before wearing hearing protection was really encouraged so I assumed those experiences played a role in taking some of the ‘edge’ off of my hearing. It wasn’t until I was unable to hear on the phone that I knew something was wrong. Thinking it was a minor issue, ear wax maybe, I visited a local audiologist. What I expected to be a routine checkup turned into nothing of the sort. A series of abnormalities in the standard audiology tests led to a referral to the Neurology Department at IU Health in Indianapolis. This was also the first of what would become many occasions where I thought to myself how fortunate I was to have such an informed and caring hearing care professional. 

A series of MRIs were ordered and conducted, ultimately showing benign tumors on both hearing nerves at the base of my brainstem. My team of physicians seemed to add more players by the minute. I was quickly, and correctly, diagnosed with neurofibromatosis type 2 (NF2) — a debilitating disorder that affects about 1 in 40,000 people. No one has ever wished more for excessive ear wax than I did that day.

I was at an age where I was just beginning to imagine a roadmap for my life…

Complete college (Marketing!) 

Find a great job (Brand management!)

Get married (Can’t wait to meet her!)

Instead I was starting a long and windy detour…

Complete…medical work ups

Find…a brain surgeon

Get…second opinions

Approximately 466 million people worldwide experience some level of hearing loss — and I was now one of them. I’ve never been one to do things halfway and my hearing loss progressed with the same all or nothing approach. Over the decade that followed, my mild single-sided hearing loss eventually became total deafness in both ears as those tumors continued to grow. 

It was during this time that I really began to reflect on the aspects of my life that I would likely lose but knew I didn’t want to forget. What were the sounds that I wanted to remember the most? I began to fear missing out on some of my life’s greatest joys…the sound of my wife’s laughter, my kids saying “I love you” and listening to music. I set out to create a soundtrack of my life…a “Matt’s Greatest Hits”…not songs by me but rather songs that connected me to moments in my life I never wanted to forget. I began listening intently to music from my life…songs I hoped would be stuck in my head at age 35 and 85. I filled my car, apartment and headphones with John, Paul, George, Ringo, Prince, Johnny Cougar and many other old friends.

A neurosurgeon once told me that losing my hearing wasn’t that big of a deal. Uhhh? I understand now what he meant. Having NF2 means that tumors can appear on the protective sheath of nerves and because our bodies are essentially a huge bundle of nerves, this can be a very unpredictable disorder to deal with every day. I sometimes joke that NF2 “gets on my nerves.” Since that initial MRI in 1997, I’ve undergone several serious surgeries to remove the life-threatening tumors. Twice, after having brain and spinal surgeries, I had to learn to walk again. And one of my EIGHT eye surgeries left me with one-sided facial paralysis, which meant I now not only lacked the ability to receive information through sound but also the ability to express information through my eyes or smile. I’m a glass half-full kind of guy, but it’s hard to sustain that perspective when that glass pours all over your shirt because you can’t move your mouth.  

After this emotionally challenging and physically exhausting period of time, some good news was more than welcomed as I underwent surgery to receive an auditory brainstem implant (ABI). This is a rarely successful device approved specifically for NF2 patients that bypasses natural hearing and instead uses surgically implanted electrodes attached directly to the part of the brainstem that processes sound. 

I’m fortunate that my ABI functions well enough for me to understand voices with the aid of lip reading, although background noise continues to be an ongoing enemy. My world sounds robotic and a bit muffled, like listening to an old AM radio that is one slight turn of the dial away from coming in clearly.  The process of having my implant programmed was yet another occasion for me to appreciate the skill and dedication of those in the hearing care field. I can communicate to a degree that I thought may never be possible when I first received my NF2 diagnosis and subsequent hearing loss.

The detour from that roadmap I envisioned in college was nearly complete as I was working, married and had three children. But not being able to hear what they would say on a regular basis was frustrating.  Often people think of hearing loss as a physical disability but don’t fully understand the mental and emotional strain it can have due to feelings of isolation. I’m fortunate to have a family that supports and understands these circumstances. 

My professional path has always consisted of marketing and sales. I had always had roles that were comfortable, but they never fulfilled a passion. I was just happy to have a job with good insurance! I began to find that passion by getting involved with hearing loss related non-profit work. Hearing loss continued to feel like a major professional liability. In all my imagined roadmaps I never once expected that experience to one day become an asset. 

Yet here I am. People occasionally throw around the phrase “dream job,” but it’s more of an idea to chase rather than a goal to attain. But I found it with Redux. I wake up each morning to a silent world, put on my ABI, begin processing sounds and head out into the audiology community to help educate people on the newest technologies for hearing instrument care. There are days I even forget that I have NF2, which I never would have believed possible. Outside of my professional life, I find comfort in NF related fundraising events like NF Hope® Concerts. Not only are great organizations like the NF Network engaging the community, but they are busy behind the scenes funding research and lobbying for increased government support for the disorder. I was absolutely honored when Kim Bischoff, NF Network Executive Director, asked me to be the recipient of The Paul Bodner Memorial Award at Chicago's 3rd Annual NF Hope® Concert on March 29, 2020. The Paul Bodner Memorial Award - an award presented to a member of the NF Community who has taken the challenges NF presents, and used them to inspire those around them. Click here for more information about Chicago's 3rd Annual NF Hope® Concert.

Today, my passion is to bring awareness and solutions to the hearing loss and NF community. Hearing aids seem to have a social stigma, whereas other accessories, like glasses, don’t receive the same reaction. There’s no doubt that hearing loss brings challenges, but as it continues to become a greater issue in our world, so does the commitment of healthcare providers and advancements in hearing technology. It’s a little strange to say, but if you’re experiencing hearing loss, there’s never been a better time to be alive! 

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ABOUT THE AUTHOR

Matt Hay of Indianapolis, Indiana, is the Director of Audiology sales for Redux, the developer of a patented drying process for personal electronic devices, hearables and hearing instruments. Using a vacuum chamber drying process, Redux removes all moisture within minutes with the push of a button while providing a real-time measure of the amount of moisture removed. This technique has been used effectively for wet cell phones, cameras, tablets, hearing instruments and numerous other electronic devices. Matt can often be found (slowly) walking, running, biking and swimming across the Midwest to support NF research.

Click here for more information about Chicago's 3rd Annual NF Hope® Concert.