A Lifelong Journey
Matt Hay describes himself as someone who almost always sees the glass half full. He also thinks of himself as very pragmatic, something he says he learned from his father. Little did he know that those attributes, along with the loving support of his family and friends, would help him weather a journey he never expected to take.
It all began at Indiana University, when Matt began having trouble hearing out of his right ear, when talking on the phone. He assumed something was wrong with the phone and bought a new one. He ignored the fact that he could hear perfectly well on the phone with his left ear. During the next two semesters, his hearing continued to get worse, until he could barely hear at all. Finally, when almost everyone he knew encouraged him to go to an audiologist, he relented. He was diagnosed with a severe hearing loss in the right ear and a mild loss in the left. And, the audiologist recommended he have an MRI.
Similar to the phone situation, Matt assumed the audiologist was wrong. “I was 19,” he recalls. “I felt invincible, like all 19-year-olds.” Nevertheless, he had the test, and the results showed he had neurofibromatosis two, or NF2. It is a rare genetic condition characterized by noncancerous tumors on the vestibulocochlear nerve, which controls hearing and balance in the brain. Only one in 250,000 people have the disorder. He would need hearing aids and eventually a surgical procedure known as an auditory brain stem implant or ABI. At 20 years old, he was slowly going deaf.
As with any loss, Matt says he went through a grieving period. “At first you say to yourself, ‘My hearing is ok. That’s not going to happen to me,’” he explains. “Then after enough people tell you, ‘Yes you do have hearing loss,’ you agree to get help. I went mostly so the audiologist would tell me I was right, and everyone else was wrong,” he explains. “It took me about 18 months to come to terms with the fact that I had hearing loss. It was especially difficult because I had no peers wearing hearing aids.” When he got fitted with hearing instruments and left the audiologist’s office, he heard sounds he had forgotten existed, like birds chirping, leave rustling and his feet hitting the sidewalk. “I thought, ‘Wow, I can’t believe it took a year and a half of anxiety to get to this point,’” he recalls.
The road to better hearing was only just beginning, however. Matt and his then-girlfriend—now his wife, Nora—knew eventually the tumors would have to be removed and an ABI performed. As with any brain surgery, the procedure is complex. Electrodes are implanted on the brainstem, which directly stimulate the hearing pathways to the brain. In Matt’s case the tumors had to be removed first, which increased the risks. And, there was no guarantee that the surgery would restore any of his hearing. But, it was a chance he and his wife wanted to take.
Matt had devised a number of coping skills during the years before the surgery. He would always sit in a corner at a restaurant, so his good ear faced out. He preferred not to do things with three people, since he usually ended up the odd man out in any conversation. Talking one on one or with other couples was easier for him. He and Nora learned American Sign Language (ASL), but they found very few other people who knew it. Matt did, however, become proficient at lip reading.
He also turned to music. He created a playlist of 66 songs he wanted to always remember. It consisted of his parents’ favorite songs, the lullabies he would want to sing to his kids, and his and Nora’s favorites, among others. He played it over and over. If the ABI weren’t successful, the songs would be ingrained in his head, where he could always hear them. “I created a soundtrack for a life I had not yet lived,” he says. “I was preparing for what would become my new auditory world.”
That new world came into being when Matt was 28. Hearing aids no longer worked, so it was time for the surgery. The procedure lasted eight-hours and left him temporarily unable to walk, hear, blink, or feel his face. The tumors had wrapped around the auditory nerve, so the surgeons were forced to sever it. The facial nerve was also damaged since it is next to the auditory nerve. The surgeon reconnected it, but nerve regeneration is a long slow process. It took nine months of facial rejuvenation therapy for him to be able to move his facial muscles, and he still can’t feel the left side of his face.
As for his hearing, he says at first everything sounded like a gravel truck. After a year of therapy, his wife’s voice no longer sounded like a gravel truck, but a vacuum cleaner sweeping up rocks. “That was progress,” he says. He decided to turn to the playlist he had listened to for so long before the surgery. That was a tipping point. One of the songs on his list is Let it Be by the Beatles. “I hear those chord progressions, and my brain says, ‘that’s Let it Be.’ By playing that music, my brain, which was processing sound one way, finally decided to listen another way. The music was like a Rosetta Stone. It decoded everything.” He adds that until the last few years, he would have not been able to distinguish Let it Be from any other song unless he knew that’s what was playing. Now 16 years post-ABI, he has more than 90 percent hearing comprehension when he can see a person. “About 35 percent of it is lip reading and the rest is unaided speaking,” he says. “In my professional life, I also use artificial intelligence when I can, which is a huge help.”
He uses the example of a recent meeting he had with one of his grade-school teachers to explain. The teacher and her husband met Matt at a Panera Bread. When he faced her, she sounded exactly as he remembered. But when he got up for a drink refill and turned his back, he couldn’t tell which one had asked him to bring back some napkins. “The ABI gives you the sense of sound and your brain puts the pieces together,” he says. “I’m still deaf, but I can hear, if that makes sense.”
Being able to hear was only part of his recovery, however. Matt wanted to measure his progress. “That’s just the type of guy I am,” he says. After relearning to walk, he set a goal of walking a mile. A month later he walked two miles. Then he learned to run. One year after his surgery, he ran and completed the Chicago Marathon to raise money for NF2 research. Seven years after relearning to walk, he competed in an Iron Man competition. Because his balance is not good enough to ride a bike, he used a special three-wheel tricycle in the competition. “It weighed 36 pounds, which is heavy for a bicycle,” he says. “But I wanted a win.”
Matt and Nora began their family after he was once again able to function. They now have 15-year-old twins (a boy and a girl) and a 12-year-old daughter. His kids know he’s deaf but rarely think about it. “They don’t know that side of me. They know the Iron Man side, which is how I want it,” he says. “I didn’t want to be known as the deaf dad.”
Not once throughout his journey did Matt ask himself, ‘why me?’ “I have great parents, I had a wonderful childhood, I graduated from college with no debt, and I have a good job. Who am I to ask, ‘why me?’ I never thought that when good things were happening to me. I did often think about how lucky I was, and I still do.”
One of the many things he’s grateful for is the support of his family and friends. He’s especially grateful to his wife, who he describes as a superhero with the superpower of patience. He can’t think of even one time when she was too annoyed to repeat something or told him, “never mind” or “forget it.” “She’s also very aware,” he says. “She’ll proactively engage me in a conversation so she’s sure I’m getting it. And she knows when I most likely won’t mind if I’m not getting it. She’s absolutely wonderful.”
Matt is also happy that he’s able to share his story. He never felt more alone, he recalls, than when he was looking for people who had had ABIs to share their experiences with him. Because the disorder is so rare, he had difficulty. When he did find someone, the person had nothing but negative things to say. “Yes, it can be a long hard road, but I want to be able to tell people that it does get better,” he says. “I want to explain that here are the things you can fix, and here are things that you can’t. I am incredibly lucky; I have 12 functioning electrodes that work for me 12 to 14 hours every day. Things have really worked out for me.”
Basically, you could say Matt Hay sees the glass even more than half full. He sees it brimming over.
Matt works for Redux, a company in Indiana that makes drying systems for hearing instruments. He is an active volunteer in the hearing health community. Audiology Services had the privilege of hosting Matt on our podcast show. You can check it out here: https://www.buzzsprout.com/421432/8401204-redux-hearing-aid-dryer-feat-matt-hay.