‘The teacher called home. ‘Vanessa is not paying attention in class.’ I failed every hearing test. ‘What are you saying?!’ I started to think I just wasn’t smart.’: Woman with severe hearing loss receives eye-opening diagnosis after 33 years

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“I had made it to 33 years old before I discovered I should have been wearing hearing aids my entire life.

In elementary school, I brought that slip home from the school hearing test, every year. A textbox circled, stating I had failed and should see an audiologist. I always gave them to a parent, but no appointment was ever made. In 4th grade, I came home with a failed hearing AND vision test. My teacher also had recently called home to say I hadn’t been paying attention in class. I was moved to the front of the classroom, taken to the eye doctor, and fitted for glasses.

Throughout elementary, junior, and high school, I struggled tremendously to keep up. My grades were always terrible. I was often accused of not paying attention. I really thought I was. I just kept trying harder. In high school, I was kicked off the gymnastics team for academic probation. It crushed me. Every night after school practice was the outlet I needed at the time. That’s when I started to believe maybe I was just not smart. That’s when I started to feel like giving up.

Courtesy of Vanessa Waznis

I remember never being on the right page in class and always being accused of daydreaming. I’d get in trouble for talking when I was just asking a classmate what we were supposed to be doing. My mom would say, ‘Just ask someone the homework if you didn’t hear it.’ Sometimes I did; sometimes I felt I was an annoyance. I appreciated the teachers that would write the homework or notes down on the board. Those are the classes where I did the best. It was a constant struggle to hear and I knew it, but I didn’t think I had serious hearing loss.

I was given tests for learning disabilities once a year. They always came back normal. It was probably because the people testing me were one-on-one, close enough for me to hear enough and read lips. I knew from a young age that I watched people’s mouths instead of looking at their eyes when they spoke. Friends pointed it out to me and I DID know it was because I couldn’t hear well. I always just assumed my hearing wasn’t drastically different than anyone else’s.

I didn’t know the extent of my hearing loss was that much more different. How could I possibly compare it to what someone else was hearing? No one took my hearing loss seriously, so neither did I. In 7th grade, I got a bad ear infection, which was untreated until it became unbelievably painful. To this day I remember how bad the pain was. It wasn’t until I was screaming in agony that I was taken to the ER. I remember the horrified look of the doctor when he saw the level of infection. He scolded my parents for waiting so long. He said the infection was so severe, I may have lost hearing and suggested following up with an audiologist to see what damage was done…it didn’t happen. Today, My ENT believes this infection is why my right ear is a lot worse than the left.

During high school, I hadn’t been set up to go to college at all. No finances, and no SAT scores. I had never taken them. Maybe it was because no one believed I’d do well in college anyway. Still to this day, people ask me how I never took them and I don’t have an answer.

Right after high school, I worked as a personal trainer in the day and a bartender at night so I could attend two semesters of community college. It was hard to keep up with grades for reasons I still didn’t fully realize. Luckily, I was scouted by a modeling agency, and that saved me. It was something I could do that didn’t require a degree, or the ability to hear well. I moved to NYC and made enough money to live on my own there. My life had completely changed for the better. For the first time in my life, I wasn’t failing at something. I had never been happier. My agency sent me to Europe for a couple years and I continued to do well in the industry.

Courtesy of Vanessa Waznis

I started writing a fiction novel in my spare time and this gave me so much fulfillment. Writing was one of the few things I always did well. I spent a good amount of my 20s in the party scene, and loud music likely contributed to more hearing damage and tinnitus. I often said to people, ‘Please speak up, I am hard of hearing.’ But still, even as an adult, I had no idea how severe my hearing loss was.

While living in Europe, my (hearing) best friend and I started to learn ASL together and it really came in handy. Not just because I was always saying, ‘What?!,’ but we could use it in loud or quiet places like on the subway or in clubs. I became good friends with a deaf guy who was well known in nightlife and the fashion industry. He was completely immersed in both the hearing and deaf world, and all of his hearing and deaf friends knew sign language. I started hanging around him a lot. This was my first glance into the deaf community.

When I was 26, I met my (hearing) husband, moved back to The States, and put myself through college. I started out at the only college that would take me, The Bronx Community College. I am forever grateful for that opportunity to start over and for all of the incredible professors and students I met. I graduated a few years later from Hunter College at 30 years old with a BA in psychology and media studies. I could never hear the lectures, but these days professors send PDFs so I could read along. I surprised myself and graduated with a 3.9 GPA.

Courtesy of Vanessa Waznis

At one of my media lectures (while learning about audio), the professor asked the entire auditorium to stand. He was playing a frequency hearing test to explain decibels and we were to sit down once we heard the sound. I was one of the older college students, but didn’t expect to sit down after the 50/60-year-olds! My husband and I laughed about it that night, but I still didn’t make an appointment. It had never been a big deal before. It was just something we all knew about me and something I lived with.

A few years ago, we took my daughter for a routine hearing test. I impatiently asked my husband what was taking them so long to start the test. His eyes widened at me, ‘Vanessa, are you kidding me? We are half way through!’ He wasn’t surprised. He demanded I make an appointment for myself. I had made it all the way to 33 years old before I ever had a proper audiology test. At the appointment, I was strongly encouraged to get hearing aids and I cried with gratitude for the awareness and opportunity to get them and change my life.

Courtesy of Vanessa Waznis

I looked back at my life and felt robbed of a proper education and opportunity to do what I really wanted. I felt as though I had fallen through the cracks of the public school system. Maybe my parents could have had me taken to an audiologist as well. I was too young to advocate for myself or really even understand what was going on. There is no sense in blaming anyone or even myself, though. I lived an incredible life and was blessed with a wonderful journey that led me to my husband and the family we have made.

Courtesy of Vanessa Waznis

My high school friends weren’t surprised when I told them how bad my hearing loss had been my whole life. ‘It was no secret you were deaf, Vanessa!’ Okay cool guys…it was to me!!! Genetic testing showed I had two GJ2b gene mutations, from both parents. I was born this way. The genetic counselors couldn’t believe it…not only is it super rare to have two of those mutations, but even more shocking to them that I am not completely deaf.

In the meantime, my hearing is stable and my husband and kids are learning sign language with me. My kids both have perfect hearing at the moment and shouldn’t be at risk for hearing loss because my husband doesn’t carry the gene mutation.

I’m not completely convinced they won’t ever have an issue with hearing. I have another child on the way, due this spring. I don’t know what his hearing will be and this scares me, but I do know (if need be) we will be able to give him so many more opportunities than I ever had.

Courtesy of Vanessa Waznis

I published my fiction novel in 2013 and I plan to get back to writing one day. Writing is my passion and I know I would have never discovered this if not for my journey. I am grateful for my family and where life led me. Connecting to the deaf community and teaching my family ASL has been a great way to cope with my hearing loss and ear issues. This past year, I discovered another passion and what I need to focus on in my life right now…advocating for the deaf.

This past June, I started a Non-profit Organization called ‘Raise the Volume.’ The objective is to raise awareness on deaf issues, encourage families to learn ASL, and to raise funds to help adolescents afford to go to colleges such as the Gallaudet University and other deaf college programs.”

Courtesy of Vanessa Waznis

This story was submitted to Love What Matters by Vanessa Waznis of New York. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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