Dec 2019 Hearing Health Foundation Personal Stories - Matt Hay
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 made 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 Indiana University 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 tumours 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. 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 tumours continued to grow. It was during this time that I 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 I wanted to remember 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,” listening to music. I set out to create a soundtrack of my life — “Matt’s Greatest Hits” — not songs by me, but songs that connected me to moments in my life I never wanted to forget. I began listening intently to my soundtrack. I filled my car, apartment and headphones with John, Paul, George, Ringo, Prince, Johnny Cougar, and many other old friends.
Since that initial MRI in 1997, I’ve undergone eight serious surgeries to remove the life-threatening tumours. Twice, after having brain and spinal surgeries, I had to learn to walk again. And yet another surgery 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 that bypasses all-natural hearing and instead uses surgically implanted electrodes attached directly to the part of my 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 a mortal enemy I continue to fight. 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 roles that were comfortable, but 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 nonprofit work. I regularly do development and consulting work for St. Joseph Institute for the Deaf, an early intervention school for children with cochlear implants like mine to prepare them for success in traditional, mainstream schools. 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 those with hearing loss on the newest technologies for hearing instrument care.
Today, my passion is to bring awareness and solutions to the hearing loss community. Hearing aids seem to have a social stigma, whereas other accessories, like glasses, don’t receive the same reaction. With hearing loss being the third most prevalent health condition for older adults, it’s important to understand how today’s technology advancements can benefit this population. 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!