It all began when I was little:
My childhood was, overall, like that of most other middle class families in Brazil. I didn’t get any more sick than other kids did, but I do recall having recurrent ear infections. My relatives claim that I had them frequently, and that I was often treated with antibiotics. This might have been the beginning of it all, but I don’t think I’ll ever know for sure.
Being a teen with hearing loss:
It never occurred to me that I had issues with my hearing. But sometime around my teens, I was told that I was not responding very well when someone tried to get my attention. I visited the ENT and they found out that I had a “skin" growing inside my right middle ear, a condition called Cholesteatoma
which often originates from recurrent ear infections. That “skin" had corroded parts of my ear bones and perforated my eardrum. I was told I needed surgery to remove the skin and to patch the eardrum. If I didn’t, the skin would keep on growing and, eventually, I’d become deaf in that ear.
I was 17 years old when I had the first of many ear surgeries. Up until that point, I never felt that my hearing loss had any significant impact on my lifestyle. But everything changed once I woke up from that first procedure. I was having noticeable trouble hearing for the first time. All sounds seemed low, distant, and muffled. There was a terrible ringing, like a lot of piano keys being played all at once and never stopping. “Patience, it’s part of the healing process,” I was told. I closed my eyes in tears and tried to go to sleep, hoping for those days of “healing” to pass quickly.
They never did.
Something had gone awry during that surgery. The surgeon couldn’t explain why, it was just one of those unfortunate cases that happens with less than 1% of the population, he told me. My right ear had completely shut off, like a broken light switch. I often imagine the hair cells inside my cochlear burned out and wrinkly, like a bad experiment done with a match and a hair strand. That ear would never work again on its own, and even worse, I had to get used to living with tinnitus
Like most humans, I learned to adapt and cope with my only functioning ear, but life was more of a struggle now. I had lost my sense of direction, and being in front of an audience would make me break out in a cold sweat. I dreaded school presentations, group discussions, or any situation where I would be placed on the spot. I felt like a fool whenever someone spoke to me and I couldn’t tell who it was, where that person was located, or sometimes, even what that person had said.
Learning a new language and losing more hearing:
In spite of my new challenges, I braved learning a new language and moved to San Francisco, California in the US. By then, I had already somewhat accepted that this would be how I would have to hear things for the rest of my life.
When I was 24 years old, something new began to happen to me. I would lay down in bed at night and a sound like a soft whoosh, whoosh, whoosh would repeat, increasing in volume, night after night after night. At first, I wasn't sure it was really there. Was it from my tinnitus? But as the weeks went on, it was obvious that something was happening to my left ear and I needed to get it checked out as soon as possible.
The ENT told me that the Cholesteatoma was inside my left middle ear and needed to be removed; otherwise, I’d lose all my hearing. Given my past history, I was petrified of another surgery, but not doing it was a worse bet than taking the risk.
The surgery revealed that the Cholesteatoma had corroded nearly all of the three bones inside my only hearing ear. Those bones were responsible for the amplification of sound waves. Without them, there was no way to get those sounds to the nerve cells in the cochlear, so I would hear very little in that ear. The surgeon did a wonderful job cleaning out any residue of the Cholesteatoma and prepping my ear for yet another surgery, where he would place prosthetic pieces to replace the missing bones.
Afraid of risking any further hearing loss of the little I had left, I decided to cancel the surgery until I was more certain that this was a risk I’d want to take.
My first Hearing Aids:
That choice meant I could no longer maintain a conversation without the help of a hearing device, so I was soon fit with my first hearing aid. Initially, I tried to wear it on both ears, but the loss on my right ear was too great to make any difference.
Again, I had to learn to adapt and cope with my new hearing. The new challenge now had to do with hearing in places that were noisy. I soon discovered that no matter how many cool features a hearing aid had, it could never match what our natural ears can do around noise.
Finding out about my son's Deafness:
I was already the mother of a beautiful, 2-year-old boy, recently graduated from college, and ready to start working when I got pregnant with my second son.
The pregnancy and delivery were normal, but right after he was born, while still in the hospital, he had a hearing screening and didn't pass.
Although there was no connection found between what happened to my hearing and his, my son was diagnosed with a severe to profound hearing loss in both ears.
From this point on, a new mark on my hearing journey began. At first, I was so focused on advocating for his needs, that my hearing loss was no longer a priority. Here was my son, who was born with very little access to sound. Before learning language, before communication. I began to learn and teach him sign language, I did speech therapy with him, I aided in his classroom, and I took every suggestion and hint from the specialists with great care. I researched information about hearing loss, devices, technology, and anything that was going on in the hearing-loss world.
When we first found out about his hearing loss, his ABR was not very accurate, so we believed he had a moderate hearing loss. He received hearing aids when he was 11 months old. As the years went by, it became very obvious that he wasn't getting much sound at all, no matter what type of hearing aid he wore.
When he was 3 years old, he was diagnosed as profoundly deaf. For the first time, I was faced with the option of having him implanted with Cochlear Implants, or not. Up until then, I felt like I was stepping in somewhat-familiar territory. After all, I'd been wearing hearing aids for a few years already. I knew it was a lifestyle that could be adapted to, but cochlear implants were a whole new ballgame for me.
After much research, many tears, fears, and support from friends, family, and specialists, we decided to go ahead with the surgery and he was implanted in one ear at age 3 and a half, and the other at age 4, marking a new milestone in his life.
Trying to improve my hearing:
What I didn’t realize until then was that by advocating for him, I was also learning how to cope with my own hearing loss. What I went through seemed so little compared to all the work he had to do to catch up with his peers in verbal communication. He did it so well, too. This was his world and it was all that he knew. He had no other point of reference yet, so he took it at face value and worked very hard at it, with so many remarkable accomplishments.
Once things had settled down into a routine, I felt ready to face a new challenge and try to go ahead with the bone prosthetic surgery for my left ear. The surgeon who was going to do it years ago had long moved to a new state, so I had to find a new one. None of the doctors wanted to go inside my ear with a knife because, for them, it didn’t make any sense to touch anything inside of a person’s only hearing ear and risk losing even more. But I was convinced that I already had my list of worst case scenarios, and all of the doctors agreed that having something go wrong with one surgery didn’t necessarily mean that I was more prone to bad outcomes. It was a controversial topic, but I got my chance and I had my prosthetic placed in my left ear.
It’s hard to describe the feeling of restoring natural hearing, but I will try. All sounds around me, from the soft husk of my fingers against the sheets, to the water running in the sink were absolutely, gorgeously rich, full, intense, and magical. I cried at every discovery! The motor of my car sounded so low and deep that it made my 1998 Dodge Caravan sound like a Lamborghini to my ears. The door shutting had a much firmer sound than before. Suddenly, the world was like a sound candy store, with all its shapes, flavors, and colors.
But, then, it wasn’t. The days after the surgery began to have their own moments oscillating between only hearing the high frequency or the low frequency. Then came the ear drainage. The prosthetic couldn’t keep itself in place, moving to a position that caused my eardrum to perforate. I would need another surgery to patch the eardrum and put the prosthetic back in place. In less than two months, I was going under for a second try.
I hoped so strongly that the prosthetic would stay in place this time, so I would have another chance at all those beautiful sounds of life. But it seems like my ear just rejected any tentative tries. The prosthetic, once again, slipped out of place. But this time, it stayed in such a position that my eardrum was not affected; however, the prosthetic was just sitting there, connecting nothing to nowhere, useless.
Bone Anchored Hearing Aids (BAHA):
I went back to wearing hearing aids, ignoring the fact that I had a useless prosthetic inside my ear. A few months later, visiting my son’s surgeon for a check-up visit, he kindly looked into my ear and told me that he suspected the Cholesteatoma had come back, and he asked me to go see him for an appointment at his office where he could take a better look inside with his special equipment.
Once again, I was being told I needed surgery. There it was, the little skin growing and trying to eat everything around it, like Pacman. But, this doctor didn’t stop there. He was determined that there was more that we could do to help me. No, he didn’t think the prosthetic was a wise idea, but he strongly believed I would be an ideal candidate for a Bone Anchored Hearing Aid (BAHA).
Oh, I’d heard of those before, way back in the day, years and years ago. It’s a hearing device that’s anchored to the bones of your skull. It bypasses the middle ear and sends the sounds though the bones in your head instead of the bones in your middle ear. Drilling a little hole on either side of my head sounded absolutely out of the question the first time that I heard about this procedure. But times were different now. Many years had passed. I had a deaf son with cochlear implants, a much more invasive surgery than a BAHA implant. I had educated myself and was much more willing to give it a try.
I had my Cholesteatoma removed and was fit with my first BAHA device. We only did one side at first, so I would have a chance to see how much I liked it and then decide if I wanted to have it placed on the other side as well. Now, I wear two BAHA devices. I’m deaf in my right ear and hear very little in my left. The devices do a wonderful job of conducting sounds to my cochlear, and I do much better than with the hearing aid. It’s not in any way like normal hearing. I still have times of struggle. The noisy environments, the wind, resting my head on a pillow are all situations that are not easy. But I learned to focus on what I have and not on what I don’t. I’m thankful I live in the days of today, where I have choices, where I have more acceptance, where I can communicate verbally, and one way or another, the message gets across.
Embracing hearing loss:
The world of hearing has influenced so much of my life and of who I am. I could even go as far as to say that I’m proud of my hearing loss, I’m proud I learned so much about it. I’m constantly eager to explore more information about the fascinating things around it and share my experiences with everyone involved.
I was Lucky to have so many wonderful human beings in my life who made this journey better than what it could have been. There are so many children out there without the support and access to resources, information, doctors, and necessary equipment.
I want to be a positive influence now; an advocate to the ones who may need help and inspiration from someone like me.