By Jennifer Neer, Hear Indiana Board Member
I was nine years old. My sister and I were roller skating on a tennis court and I decided to skate as fast as I could. And I did – I was flying. Until a rope that was holding up the tennis net hit my chest and threw me backwards. I was dizzy, my head hurt bad. I was rushed to the hospital and it was discovered that I had fractured my skull. My ears were ringing, and I was so incredibly tired. I stayed in the hospital for a week and was home from school an additional week. It hurt to brush my hair, I had the ringing in my ears, and I noticed that I wasn’t hearing correctly in my right ear.
The words weren’t loud enough and what I was hearing was a lot of gibberish. I could piece together a lot of what I was hearing by trying to get the first and last part of words I heard, but it was hit or miss. I was tested and I failed – miserably. I was told I had tinnitus and was “mostly” deaf in my right ear with 30% comprehension. Something in my inner ear was injured during my accident. There was nothing they could do for this type of hearing loss.
Fast forward to the age of 21. Again I was tested and again I failed. The thought was that if I could hear the sounds, I would understand them, so I got a hearing aid for my right ear. Sure it made things louder but what I heard was louder gibberish. It was big and bulky and gross looking. I returned them after a week. I felt destined to just be a one-sided listener.
Life went on. I stayed on the right side of every room, walked on the right side, talked on the phone on my left ear only. I adapted in business meetings, in office settings, in casual settings. I knew important things were being missed, so I would ask a lot of clarifying questions. I frequently said, “I am sorry, can you repeat that?” I would instruct my friends to whisper in my left ear.
My friends adapted. They knew to stay on my left side. They accepted my constant requests to repeat something once, if not twice.
So many times, I would just give up. I wasn’t getting it and I would just smile as if I had heard it perfectly. It was my destiny.
Then, at 44, I learned of Hear Indiana. Through a personal connection I was asked to join their board of directors. During my initial meeting with Naomi Horton, Executive Director, we discussed how I was related to the deaf and hard of hearing world and I told her my story.
Naomi told me about this system that would take what I wasn’t hearing in my right ear and electronically transfer it to my left ear. My thought was, “Yeah, right. I was told there was nothing that could be done. I am destined to live this way.” But I was fascinated. What if this could really work for me?
I scheduled an audiology appointment shortly after that meeting. It confirmed and explained what was going on with my right ear and, surprisingly enough, my left ear too. There was profound hearing loss in my right ear with 28% “comprehension” and mild hearing loss in my left ear. The bones in my inner ear on my right side weren’t moving at all. Honestly, it was pretty hard to hear, literally and figuratively. It is one thing to know you don’t hear well, but to have it made official, it made me sad. Just accepting the loss and living with it was so natural. Now, I felt labeled. It felt weird.
The audiologist went on to recommend a Bi-Cros system by Phonak. It was expensive. My insurance didn’t have benefits for hearing aids. There was no guarantee that it would work. I went on without the system. I requested and was granted reasonable accommodations at work. It was my destiny.
Coming into work in June of this year, we were told that the insurance plan we were using was going to be replaced and there was an allowance for hearing aids. The next week, I made an appointment for an evaluation and obtained medical clearance from my primary care provider. I chose a more advanced, automatically adjusting hearing aid for my left ear and the transmitter for my rightt before I even got there – even picking out the color I wanted. It was exciting and frightening. And it was going to be expensive. Even with insurance, there was out of pocket money that was more than this all might be worth.
I had lived with this hearing loss for 35 years. Was I getting my hopes up only to be horribly disappointed? And even more so, what if it worked?! It has been so long. I had lived this way for so long. I had adapted so well that nobody could really tell anymore.
The hearing system arrived within two weeks and I went into that appointment cautiously optimistic. I was so nervous. This would change my life. Or, it wouldn’t. She put a device around my neck to link the hearing aids to her computer, made sure my ears were clean, made sure they fit, and then sat down.
“I am going to turn them on now.” She said. And she did. And they clicked. And clicked again. It was definitely louder. They clicked again.
I looked at her and asked, “Is that a clock that I am hearing?” as they clicked again.
She smiled. “Yes.”
And I cried.
We made some adjustments so that they weren’t so sensitive, the clicking stopped. It was so weird. I was hearing – like really hearing. Only not. The sound wasn’t exactly natural. The voices were tinnish; like someone was calling from a 1960s payphone. My own voice sounded so weird and it sounded as if I were lisping. And my goodness! The environmental sounds were insane! My keyboard, tap, tap, tap, tap, tap. The girl opening the mail three cubicles away – riiiiiiiiiiiiiiiiiiiip. And bags, any kind of bag – crunch, crunch, crunch. Eating potato chips (or anything crunchy) – please, just give me potatoes or soup! Sounds that I had been missing, I had to start to learn. The sounds I knew sounded different, so I learned their new sound. It was weird having something in my ear all the time. They weren’t clogged, just that there is something in there that wasn’t before. When I took them out, it still felt like they were in. The problem was that I wasn’t really feeling like the voices were getting any better. I wanted to hear people.
Two weeks later I returned to the audiologist. I explained to her my concerns and she was able to make some adjustments. They were great. I could change from the automated setting over to loud place settings. I could make the right microphone more sensitive and it not affect the microphone in the left hearing aid. I loved it!
But was it worth it? After one month, I have asked myself this so many times. They are expensive. I have lived like this for so long. Is the hearing loss just part of who I am? But they help. I would make a decision to return them, keep them, return them, keep them, back and forth so many times. There was an unforeseen luxury: I could take them out or turn them down when I didn’t want to hear certain things (like crunching). I set up a time to return them last week so I quit wearing them. Two days later, there was such a significant difference. I noticed I was asking for things to be repeated again. I was missing and giving up trying to understand in large crowds again. I put them back in last night for a special event.
They work. They aren’t perfect. I will still have to learn the new way I hear sounds. There will be times that I will still get frustrated with all of the environmental sounds. But I will hear them and I will understand so much more. And that, my friends, is worth every penny. I am keeping them!