Making the decision to undergo cochlear implant (CI) surgery—a procedure that bionically restores hearing for individuals with severe-to-profound hearing loss—is a monumental step. For thirty years, I navigated progressive hearing loss, coping with constant tinnitus, relying on hearing aids, and keeping my struggles hidden in the “hearing loss closet.”
When I learned I was a candidate for bilateral CI surgery in 2013, I was understandably overwhelmed by doubts and fears. Ultimately, it was the testimonies of others with hearing loss who had successfully reclaimed their hearing through bionic ears that gave me the courage to move forward.
Recognizing the power of those stories, I meticulously documented every phase of my own CI journey. From the initial exams and ENT consultations to the heavy emotional toll of the early days and the final activation of the electrodes, I recorded it all.
**this post was originally written in 2013 and 2014. Today, I have bilateral cochlear implants and I can hear pretty well. I lead the largest online community of people with hearing loss in Brazil – Clube dos Surdos Que Ouvem – and I’m married to the best ENT surgeon in the planet (lol), Dr. Luciano Moreira.
In this post, I have gathered all the personal accounts I originally published on Crônicas da Surdez detailing the journey that led to my first cochlear implant surgery in 2013. It feels like another lifetime. A decade later, I am bilaterally implanted and hear wonderfully.
You will read about my expectations, fears, sadness, apprehensions, and discoveries. From post-surgery recovery and temporarily losing my sense of taste (bad news: it never fully returned!) to dealing with “chainsaw” tinnitus. I also detail my activation day, the first sounds I heard, and the whirlwind of emotions involved. Read this long post as if you were reading my diary and travel with me. Perhaps these words will help you gather courage, answer your questions, and lose the fear of trying to hear again.
How Cochlear Implant Surgery Revolutionized My Life
I decided to compile this material because every day I receive messages from people who are new to The Hearing Loss Clube asking: “Tell me more about what it was like deciding to get a CI!”
Having it all in one place makes sense. If a decade of writing about hearing loss has taught me anything, it’s that people don’t like digging through old website archives. Consider this compilation a gift. It is an important and nostalgic piece of my history, and I am incredibly proud of it.
June 25, 2013: Where the Journey Began
When I was diagnosed with progressive bilateral hearing loss at 16 (or 17, I can never remember), I thought the day it became profound would never arrive. But it did. I was very happy with my hearing aids, which pulled me out of profound hearing loss and brought me to an almost mild level—at least in terms of volume.
I can be on the eighth floor of a building and hear a dog barking on the street, cars passing, or an alarm sounding. I can hear music wonderfully well. However, understanding what I hear is another story. I reached a point where I was hearing with my ears AND my eyes. For communication, I was 100% dependent on lip-reading, with or without hearing aids.
Last week, I had exams at HUSM with a friend who is an audiologist and has followed my case since 2010. I talk about her in my book, Bionic Chronicles, when I recount the story of the audiologist who asked why I was so resistant to hearing aids. When I confessed I was afraid of getting attached to sound and losing it completely one day, she simply replied, “But then you get a cochlear implant!”
My speech recognition index, with or without hearing aids and without lip-reading, is exactly zero percent. So, the next step is the cochlear implant. I’ve done countless exams and started consulting specialists. My desire grows daily, alongside my anxiety—I get tachycardia just emailing a doctor about it. The decision is made. I confess that just imagining listening to music and understanding the lyrics without reading them gives me an unprecedented adrenaline rush.
July 23, 2013: The Turning Point
I’ve been more introspective than usual. Hearing loss, that heartless cretin, pushed me to my absolute limit. Progressive bilateral profound hearing loss is not for the faint of heart. Seriously.
I love my hearing aids, and if they gave me speech comprehension without lip-reading, I’d wear them forever. But coming home cross-eyed every day after hours of reading lips is exhausting. It is distressing.
I decided to start my Cochlear Implant journey. The first step was confirming I was a candidate. I consulted with Dr. Luiz Lavinsky and Dr. Michelle Lavinsky in Porto Alegre. As I always say in my lectures, a doctor’s bedside manner is everything. A doctor who greets you with a smile, answers your questions, and gives you security is the one who will give you the courage to face a long and stressful rehabilitation.
Pre-Surgery Exams
I had an otoneurological exam, which I can only describe as watching The Matrix dubbed in Chinese, completely stoned, while balancing on 6-inch heels trying not to step on glass. Afterward, I felt like I had a typhoon inside my head.
Following the genetics tests, BERA, and MRI, I got the final verdict: I am a CI candidate.
Confessions of a “Strong Woman”
Don’t think this was easy. I usually consider myself strong, but this journey is intensely personal and non-transferable. It’s difficult to explain your deepest fears to those around you. I want to thank my mother, who supported me the entire time, put up with my bad moods, and tried to make me laugh when I wanted to cry rivers.
One of the worst things about having a reputation for being strong is that people assume you can endure everything effortlessly. If a “fragile” woman gets a cold, a thousand people offer help. If a strong woman faces major surgery… people assume she doesn’t need anything. It sucks.
September 4, 2013: Psychological Toll
The mandatory psychological evaluation really affected me. Having to summarize your life to a stranger is strange. It made me dive into a deep, unusual journey into my own mind. I kept recalling childhood memories—like calling my house collect from a payphone at the beach just to hear the operator’s voice.
What brings me the most anguish right now is music. I keep remembering songs from my past, like singing in the car with my godmother. Those memories feel like a stab to the heart.
The strangest feeling is that getting the CI feels like preparing to meet someone who died. That someone is my old hearing—the old Paula, the one who was independent, who wasn’t afraid to be home alone, who didn’t need to hear with her eyes. What will I feel if I meet her again?
September 17, 2013: The Final Countdown
Surgery is confirmed for September 28. My nervousness has morphed into pure, unadulterated anxiety. I don’t know how my loved ones are tolerating me, because I am a bundle of nerves. Any misplaced comment makes my blood boil.
My CI will be the Nucleus 5. I ordered 120 batteries from Amazon because I refuse to pay the absurd prices in Brazil. I am officially ready for Paula Robocop to arrive.
September 30, 2013: Post-Op Updates
The new cyborg in the neighborhood is speaking! I had surgery on the 28th and have just been discharged. How do I feel? Strange. I have no taste on the right side of my tongue, and my tinnitus fluctuates between absolute silence and a roaring chainsaw. My face is swollen, but thankfully, no dizziness.
To the medical team, my mother, and everyone who sent messages: thank you. When you feel helpless, someone taking a minute to send a message makes a massive difference.
October 7, 2013: Recovery Realities
The dizziness has decreased, and the tinnitus is stabilizing. I’ve become deeply intimately acquainted with my new “bald spot” behind the ear. Surprisingly, I love it! Paired with my tattoos and leather jackets, it gives off a phony punk vibe. I have zero urge to hide it.
I look at the Cochlear Implant as a technological miracle. The gravity of it hasn’t fully hit me yet because I programmed myself to have zero expectations. But I’m starting to realize how much my life is going to change for the better, and I can’t stop smiling.
October 16, 2013: Emotional Rollercoaster
I’m back home in Santa Maria. I am living one day at a time. I have realized you need to be in a very stable mental state to go through this because it wreaks havoc on your emotions. The dam I built to avoid feeling things for years has completely broken.
Two events recently validated my decision. First, in the hospital room, surrounded by my family chatting, I was completely trapped in the maddening prison of silence. Second, my mother slipped and fell in the shower. I was in bed without my hearing aid and couldn’t hear her screaming for help for 20 minutes. Hearing loss leaves you an ocean away from someone in the very next room.
November 7, 2013: The Post That Changed My Life
(Note: If you are new here, I ended up marrying my ENT surgeon, Dr. Luciano Moreira, because he read this exact post on Facebook and sent me a message. The rest is history!)
Activation is on November 11. I feel like I want to be part of the world again—and by world, I mean connecting with people. I miss the extroverted, brave girl I was before my hearing faded. My decision was entirely based on reclaiming my quality of life. I am putting it in God’s hands. Root for me!
November 11, 2013: Activation Day
If anyone doubted love at first sight, I was beautifully proven wrong. I went into activation expecting to hate it—everyone said voices would sound like Donald Duck. To my absolute shock, I easily differentiated voices immediately. When Dr. Lavinsky walked in, my brain instantly registered: “Man’s voice, hi!”
Later at the hotel, with my back turned, I understood almost everything my audiologist said to her mother on the phone. WITHOUT lip-reading. I almost had a heart attack. And hearing my own voice after 22 years? Indescribable.
The First Road Trip
Driving back to Santa Maria, I spoke with my mother for hours without looking at her lips once. I understood about 70% of what she said.
Sensory overload hit hard by the third day. The normal noises of a house drove me insane. If someone called my name one more time, I was going to punch them. I took a sedative and went to sleep.
But there is profound beauty, too. I accidentally heard the rain falling outside. I closed my door, turned off the TV, and just listened to it for 10 minutes, my heart pounding.
November 24, 2013: Cyborg Life Adjustments
Two weeks in. The external unit kept falling off my tiny ears until I switched to a smaller earhook and rechargeable batteries, which provided better stability. The daily routine of dehumidifiers and charging batteries takes getting used to, but it’s worth it.
Going from silence to a noisy world is like leaving a Buddhist monastery and being dropped into Times Square. Hearing my dogs walk thrilled me on day one; by day seven, it gave me a migraine. Going to the bathroom sounds like Niagara Falls.
But no moment of frustration eclipses the miracle of hearing my own voice perfectly. I watch TV in English, understanding the words, feeling like an Egyptian queen being fanned on a hot day.
I Am Not the Same Person
I am fundamentally changed. The internal shift is invisible to others but profound for me. I am so happy, and I feel like I’ve been handed the greatest gift in the world. Anyone living with profound hearing loss has no idea how much they are still missing out on.