Attention deficit, developmental delays, processing disorder: These were the words my parents heard about me from a half dozen doctors, audiologists and speech-language pathologists. But both my parents (and grandmother) work in the medical field, and these diagnoses just didn't fit what they saw. When my attention was grabbed, I had no issues sitting still or focusing. Simply put, I was not speaking or responding to sounds.
After 18 months of being tested and retested with one misdiagnosis after the next, someone advised my mother to take me to the school district for testing. This was after a year's worth of constant speech and language therapy. Fearing I would be labeled, my mother initially objected, but eventually she relented, and within minutes of my being tested, the school district informed her I had hearing loss. I was 3 at the time, and this was only the beginning of a long road ahead.
The diagnosis finally made sense. The doctors started talking about hearing aids, schools for the deaf and sign language, and they told my parents I would never be able to function in the hearing world. My parents were devastated; their world was flipped upside down.
Like 90 percent of other deaf or children with hearing difficulty, I was born to parents with typical hearing (their eyesight is another story). I thank my grandfather for giving my mother this advice: “If you don't try teaching her language now, you'll never know if she's capable or not.” From that day on, my parents were determined to have me learn to listen and talk. If I failed, I would have failed trying.
Around this time, I started preschool. My first year, I was in a predominantly deaf school, and I was one of three students with hearing loss in my class. I was not learning spoken language or socializing with children who were speaking.
For my second year of preschool, my parents enrolled me in a language-delayed class with verbal students for half the day and in a mainstream preschool for the other half. The school district was not supportive, mainly because they would lose funding if I was not in a deaf class.
They even threatened legal action, but my family did not care and was prepared to fight. Luckily, it didn't come to that. I attended the language-delayed class for half of the day, and the other half I attended mainstream preschool classes. I was just fine and remember loving school.
When I started kindergarten with new kids at a new school, things were less seamless. Socializing with my peers didn't come as naturally as it did in preschool. The first few days were tough and I went home and cried; I felt scared and lonely. I also remember feeling different because people were asking about my hearing aids. For the first time, I had to answer these questions alone.
Fortunately, my older brother came to the rescue. He taught me how to introduce myself to people and make conversation. I remember we sat in my room practicing for hours after school, until my skills were perfected. This was the beginning stage of learning to accept my hearing loss.
One of the more difficult questions I had to answer was what “those things in my ears” were. I was frustrated that it seemed that people of all ages and backgrounds didn't understand why I needed hearing aids and asked repetitive or invasive questions in order to point out what was different about me. Now that I'm older, I realize many were asking about “those things in my ears” not to belittle me. They were simply uninformed and tried to understand what I endured on an everyday basis (Of course, some were just bullies.).
For a large part of my youth, it felt like the world was staring at my ears. Self-conscious, I kept my hair long to cover my hearing aids. I was also tall for my age (still am at 27) and the only one in my class with red hair. I always loved my hair color, but sometimes felt I stuck out too much. Over time, I began to slowly comprehend that being different was not always a bad thing.
Sometimes I would wonder, why me? But then in young adulthood, I started to realize how lucky I am. Having to overcome so many obstacles helped me develop a better understanding and appreciation of life and the struggles that come with it. Gradually, I became more and more comfortable with my differences.
I learned to take ownership of my disability, and I encouraged others to do the same. I want to dedicate my life to contributing to the hearing loss community on a daily basis. My hearing loss is part of my life, but it does not control my life. I learned to take ownership of my disability, and encouraged others to do the same.
In high school, I started a website to provide a means for children and young adults with hearing loss to get advice about social and academic issues via an anonymous and confidential email exchange. After a few inquiries from parents, I expanded this service to caregivers, who emailed my mother a range of questions about audiologists and educational services. The website was the support network that both my mother and I wished we'd had when I was young.
When I was a sophomore at Barnard College of Columbia University, my audiologist, Jane R. Madell, PhD, fitted me with Phonak Naída hearing aids, and the company asked me to be filmed in videos tracing my adjustment. These videos focused on my life and struggles as an adult with hearing loss. They influenced thousands of other adults and health care professionals, as well as the general public.
The videos went beyond YouTube (with more than 50,000 views) and are used at medical conferences and doctors' offices around the country. A family friend once saw my picture in a Phonak brochure at an audiologist's office in my hometown. Over seven years later, I'm still hearing about it.
In 2014, Dr. Madell asked me to appear in her documentary on hearing loss. I had the opportunity to share an even greater part of my story, including some of my struggles entering a downturned market workforce with the added pressure of having a disability. Dr. Madell has nearly five decades of experience treating pediatric hearing loss, and I attribute a large part of my success to her.
When I taped my story for the documentary, Dr. Madell instantly knew something was not right. As someone who watched me grow up, she knows my tone of voice and my demeanor almost too well. I once thought of becoming a lawyer as a direct result of my parents' early advocacy efforts. Through talking with her about my job, life and career aspirations, we both came to the conclusion I needed to make changes to feel fulfilled and happy.
All my life was about ensuring I didn't miss a beat in class, that my three and a half years without spoken language didn't impact my understanding of the world around me. I always had a set goal of getting from A to B with the help of my family and constant language training. Suddenly, I was free to pursue a life and path of my choosing in an unaccommodating, unforgiving world. I was unprepared for that moment.
There was one common denominator that Dr. Madell and I uncovered: I am happiest when helping others. I realized I wanted to dedicate my life to contributing to the hearing loss community on a daily basis, rather than only through a few independent experiences.
I had spent a large part of my academic career studying disability as it pertains to labor, employment and reasonable accommodations in a variety of situations. One of the most disconcerting things I learned was the very policies that are supposed to help individuals with disabilities gain equal access have instead continued to put them at a disadvantage. I want to change that.
After Dr. Madell helped me define my life goals, I reached out to various hearing loss associations with a presence in New York City, where I live. As a member of Hearing Health Foundation's National Junior Board (now New York Council), it was natural that HHF was one of the first organizations I contacted.
I never imagined that the timing would be serendipitous. With my background in corporate marketing and public relations, I landed the communications and programs position. I have been in my role for a little over a year, and I am privileged to work with an amazing and dedicated staff and volunteers, both at HHF and other organizations, who are working to make all of our lives better.
On those occasions when I'm sick and tired of having hearing loss, I sing the refrain from a song by Chumbawamba's "Tubthumping" to myself: “I get knocked down, but I get up again. You're never going to keep me down.” It's simply the truth.
This article was originally published in the Spring 2016 issue of Hearing Health Magazine.