My long, slow journey into deafness has left me with a desire to explain my experience to anyone who will listen. My typical audience is a classroom filled with college students. They are there because they signed up for the American Sign Language and Deaf Studies courses that I teach. Their encouragement drives me to find others who will listen and advance my goal to educate through advocacy.
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ASL, sign language
UNEXPECTED BEGINNINGS
Born and raised with normal hearing, I recall that my speech sounds were no different from anyone else's. But when I was in third grade, I was diagnosed with mild hearing loss. It was believed to be due to an excess of wax in my ear. For the rest of my elementary and high school years, I was followed by an audiologist. Mysteriously, my low-frequency hearing gradually declined. No other symptoms developed, leaving my mild hearing loss unexplained. My school years, including college, passed uneventfully. The only sign that I had hearing loss was my difficulty understanding the words of a song on the radio.
Seeking to further my education, I pursued a master's degree in deaf education. This choice had nothing to do with my own hearing loss. Rather, when I was 11 years old, my oldest sister studied to become a teacher of the deaf (TOD). She introduced me to sign language, thus the seed of my interest. Upon completing my degree, I worked at a school for the deaf where I met and married a fellow TOD. Notably, his mother was a TOD and his aunt was born deaf. In addition to my oldest sister, the family's first TOD, my brother married a TOD, and another sister began working as a teacher's assistant at a school for the deaf. My life was being filled with fluent signers. Little did I know how critical this would become.
BRACING FOR CHANGES
As time passed, my hearing began to deteriorate faster. By my mid-20s, I was fitted for my first hearing aid. My hearing loss was considered mild-to-moderate, but it left me struggling to hear someone on the phone and distinguish between words. For some time, a unilateral hearing aid was all the help I needed. My audiologists determined that the reverse slope indicated Meniere's disease, even though I didn't exhibit signs of vertigo.
The absence of vertigo lasted until I was 40 years old, when I was floored by the violent impact of sudden onset dizziness. Additional health problems started to complicate the overall picture, but it was clear that my hearing was declining at a rapid rate. By this time, I was fitted with a second hearing aid. Frequent adjustments were needed to support my ever-changing ability to function in different environments.
I also began to use the label “hard of hearing” to explain why I often needed words or phrases repeated and why I usually miss the punchline of a joke. I was no longer able to use the phone for casual conversations. Unwittingly, I found myself relying on speechreading, body language, and contextual clues.
COPING WITH HEARING LOSS
If I thought my 40s required stamina, it was my 50s that taught me life is truly unpredictable and saying goodbye to sound requires going through a grieving and healing process. The mysterious medical symptoms I experienced when I was a child began to take shape, and my medical team was ultimately able to diagnose me with a systemic autoimmune disease. With more information, my otolaryngologist and audiologist threw out the Meniere's diagnosis and replaced it with inner ear autoimmune disease. What started as a mild hearing loss in the low frequencies progressed to severe bilateral heairng loss at 70 dB. Word discrimination was a struggle, at best. My ability to function as a hearing person slipped away. I changed my label from “hard of hearing” to “deaf”—the word that captured my true functioning despite getting great support from using hearing aids. With no hearing aids, the sound I hear carries no meaning.
Although my autoimmune disease wreaks havoc, I am determined that while I have it, this condition does not have me. My platform as the coordinator of the American Sign Language (ASL) and Deaf Studies program at my university allows me to develop relevant courses, partner with the local Deaf community, and teach my students that there are many ways to be deaf. I am fortunate because unlike most late-deafened adults, I have ASL and a community to support my journey.
Saying goodbye to sound has given me a new perspective, a deep sense of gratitude, and a passion to educate others about deafness. My work in Deaf advocacy, particularly focusing on equal communication access, is unique because at times I am a hearing person who signs, and at other times I am a deaf person who speaks. It doubles my audience.
I am in awe that I have been blessed with a support language long before I needed it, a family who understands deafness, and a network of professionals from audiology to education. I'm determined to continue my advocacy until airline companies stop offering deaf passengers wheelchairs and braille cards, until first responders develop fundamental communication skills, and until everyone fully grasps the universal benefits of open captioning. In the end, it seems that my passion has replaced my hearing.
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