In May 2013, I shared my 30-year journey with progressive hearing loss in Vogue Brazil. By that point, I had reached profound hearing loss—unable to hear almost anything, even with the latest hearing aids. I’m a deaf author of three books (you can find them on Amazon), and I lead the largest online community for people with hearing loss in Brazil and Latin America.
That July, I was giving a talk in Campos do Jordão and went out to dinner afterward with some speech therapists. My mother took a photo of me sitting at the table, fast asleep. I couldn’t follow any of the conversations and had given up trying. When I saw the picture, I broke down in tears. I was constantly exhausted, isolating myself more and more. Despite helping others cope with their hearing loss, I was struggling to manage my own.
On the way home, I made a stop in Porto Alegre to find out if I was a candidate for cochlear implant surgery—the so-called “bionic ear,” the same device Malala uses. Cochlear implants aren’t for everyone, so I had to undergo a series of tests. On September 28, 2013, I had surgery on my right ear. Then came 47 days of silence and tinnitus until the implant was activated. The day the electrodes were switched on, on November 11, 2013, I like to say I was reborn.
At first, hearing again felt overwhelming, but it soon became a gift. The vast distance I’d felt between myself and others vanished. I could talk on the phone for the first time in over 15 years. Hearing the ocean waves again felt miraculous. Life, which had seemed like a static, soundless picture, became vibrant and full of possibility. The first song I understood clearly was “Eu sei que vou te amar” (“I Know I Will Love You”), and it sent a shiver through my entire body.
That same day, I received a message that would change my life. A doctor from Rio de Janeiro, Luciano Moreira, reached out on Facebook to congratulate me on my surgery and tell me he was a fan of my writing. Less than a month later, we met, fell in love, and began flying back and forth to see each other. On May 5, 2014, exactly one year after our first kiss, we got married, and I moved to Rio de Janeiro.
In 2015, I published my second book, New Chronicles of Hearing Loss: Cochlear Implant Epiphanies. The joy of helping others embrace their aural rehabilitation and step out of the “hearing loss closet” was indescribable. I love seeing people take pride in the technology that lets them hear again—it’s life-changing. Hearing loss is invisible, but I want my cochlear implants to be anything but. I like them to be colorful, fun, and eye-catching!
In June 2015, after launching my book in Porto Alegre, I arrived in Santa Maria and noticed my mother acting strangely. That same night, she collapsed, and I had to rush her to the hospital. I’ll never forget that moment: I was able to call the emergency room, talk to her in the ambulance, and handle all the hospital logistics by myself. Without my cochlear implant, none of that would have been possible. I might have lost her that night.
She spent nine months in the ICU before coming home. One day, in isolation, she told me, “I love you more than the world.” I cried. “I’ve told you that every night since you were little,” she said. It was the first time I’d ever heard her say it, thanks to technology. My mother passed away in March 2016. When I miss her, I watch the video of my cochlear implant activation, which she recorded and narrated.
Later in 2016, I decided it was time for my second cochlear implant. I wanted to hear the world in stereo. The surgery was smooth, and now I hear whispers, birds, the wind, waves crashing, and even my own breathing when my implants are on. I joke that it’s nice to have an “off” button—I sleep in total silence, and I can tune out anything unpleasant. My husband and friends are a bit jealous.
In 2017, I gave a TEDx Talk called The Hearing Deaf. There’s a lot of misunderstanding around hearing loss, and many people still think deafness only means complete silence—that every deaf person communicates with sign language. But that’s a myth. My mission has been to break down those misconceptions and promote awareness about untreated hearing loss. Yes, there are people like me—hearing deaf people. Brazil’s Sistema Único de Saúde (National Health Service) provides hearing aids and cochlear implants for free, and it’s one of the best public health policies for hearing in the world.
In 2018, I won the Facebook Community Leadership Program for Latin America. Out of 6,500 entries from around the world, I received funding to create a project for our community, which now has over 20,500 members. We organized events called *Conexões Sonoras* (Audible Connections) and launched a video campaign sharing diverse stories of people with hearing loss. We also developed an online course for parents of children with hearing loss. The hashtag #surdosqueouvem (I Am Deaf But I Can Hear) became a movement, bringing representation to millions. According to the WHO, there are 1.5 billion people worldwide with some degree of hearing loss—and that number is only going to grow due to a general lack of knowledge about hearing health.
Since then, I’ve traveled the world to talk about the hearing deaf. I joined the World Health Organization’s World Hearing Forum and collaborate with Brazil’s Society of Audiology. I lecture on ableism, diversity, and inclusion. I’m proud when people tell me they started wearing hearing aids after following me online. I’ve had the chance to meet leaders like Marne Levine, Vint Cerf, and Jenny Lay-Flurrie—people in high positions at the world’s largest companies who also have hearing loss. In Brazil, we’ve had strong advocates for our cause, like Benedita Casé Zerbini, Brenda Costa, and Pedro Neschling, who proudly wear the #surdosqueouvem t-shirts.
The pandemic was particularly cruel to people with hearing loss. Suddenly, the whole world was wearing masks, making lip reading impossible. But it also highlighted the lack of digital accessibility and spurred some change. Now, there are free apps that generate automatic subtitles, and more brands are captioning their content.
The world is loud, musical, and full of sound. Being able to hear again has reawakened dreams I’d long buried and allowed me to fulfill many of them. Today, the sound I love most is my 4-and-a-half-year-old son singing “More Than Words” with me before bed. To think, just eight years ago, I couldn’t even hear the sound of an airplane engine…
ANY QUESTIONS?
Paula Pfeifer is a brazilian writer. Two of her books about hearing loss, hearing aids and cochlear implants can be found in english and spanish in Kindle.
Support Paula Pfeifer’s work. She is a hearing rehabilitation activist in Brazil and she is deaf herself – two cochlear implants. You can support here!
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