Meet Sarah.
Hi! My name is Sarah and I have Meniere’s Disease, an inner ear disease that causes hearing loss. I was diagnosed about 2 years ago and navigating the world as newly Hard of Hearing has been quite the journey! I hope you’ll come along on this ride!
Sarah’s Diagnosis
So, what IS Meniere’s Disease? Meniere’s Disease is a disease of the inner ear that can affect one or both ears. The symptoms of Meniere’s Disease include fluctuating hearing loss, episodes of vertigo, tinnitus, and aural fullness. To be honest, I still struggle with understanding the disease, why it happens and the exact physical causes. It has been explained to me so many times, but I’m not a doctor! The onset of symptoms usually occurs due to a buildup of fluid in the inner ear, specifically the labyrinth. The labyrinth contains the organs of balance and hearing (jackpot!!!). Typically, Meniere’s Disease is found in people over 40, with less than 3% of cases being reported in people under 18. At the time of my diagnosis, I was 18, making me one of the “lucky” few! The road to my diagnosis was a strange one. I have always struggled with my hearing, some days waking up with a complete block in one of my ears, just thinking it was ear wax.
Until, one day, I found myself in an internet deepdive. I was researching the actors from Switched at Birth (couldn’t tell you why), when I stumbled upon Katie Leclerc, the actress that plays Daphne. I was curious to see if she was a Deaf actress. I found that she had a condition called (you guessed it) Meniere’s Disease. Being curious, I started looking into the disease and realized… wait… I experience all of these things. I thought they were all just a part of my many other health problems, and had sort of just dealt with them on my own. The next morning, I made an appointment with my ENT and told him my symptoms. After extensive testing, I was finally diagnosed!
What’s next?
To be honest, my diagnosis shocked me. With my condition, there are a lot of unknowns. The vertigo can flare at any moment, making it incapacitating. My hearing loss could become profound, there is really no way to know what the future holds. At first, I was scared to embrace this new aspect of my identity. What would being Hard of Hearing mean for me? I was scared, not knowing if I would lose access to communication with my family and loved ones. I expressed these fears to my best friend, and she suggested I start learning American Sign Language (ASL).
She said she knew of a Deaf person my age nearby, who gave free ASL classes to the community with his dad. I decided to give it a chance, what was the worst that could happen? The first night that I went, I knew I had made the right choice. I was captivated by the language, piecing together what little I knew with what I was learning. These weekly classes became my lifeline, a way to feel like I wasn’t completely lost and drowning in this new diagnosis alone. I began to learn all about this new language and culture that I now belonged to. I made some of the best friends I have ever known, and was embraced by the Deaf/HoH community entirely.
A New Perspective
I never would have guessed that something originally so frightening could have turned into something so amazing. I have been learning ASL for 2 years now, and cannot wait to continue learning. The doors it has opened for me, personally and in my career, have given me things I never thought possible. I am so thankful to my friend Tommy, who held the classes I attended. He has welcomed me into the Deaf community with open arms, encouraging me along the way. I have taken classes with Sign Language Center, have attended Deaf events in NYC, and I even went to Deafopia this past fall! I have met so many people who have guided me and helped me, and I couldn’t be more grateful. I realized that my hearing loss, and whatever it may or may not progress into, is not something to be afraid of. It might be different from what I have grown up knowing, but it is amazing nonetheless. I have access to conversation that I never thought would be possible for me with spoken English.
The vertigo attacks are not as frequent as they were 6 months ago, but they are still scary. Never knowing when you might wake up with one, or one might come on and throw off your day, is a scary thing. However, now I just focus on feeling grateful for when I am feeling good. The days I wake up with my head on straight and my feet under me, I never take them for granted.
Just the Beginning
While this is the end of my post, it is most certainly not the end of my story, in fact I feel it is just the beginning. If I could’ve told myself 2 years ago that this is where I would be now, I wouldn’t have believed it! 2 years ago, I was in the darkest place I have ever been in, struggling with coming to terms with abuse that I endured all throughout my childhood at the hands of my father. Through my healing journey, meeting new friends and learning ASL has been an amazing escape. I am currently studying education and hoping to transfer to a school that offers Deaf Education next year. I feel passionately that all Deaf children deserve access to ASL, and that everyone has a right to accessible communication. Working with children is something I have always loved, and I am thankful to be able to study Deaf Education specifically! I have come to accept and embrace my hearing loss, but I am also more than my diagnosis. I am a writer, a friend, a survivor, a farmer, a creative person, a member of the LGBTQ community.
I love my 10 year old cat, my family, going for walks with friends, swimming in lakes, reading, and so much more. I am proud to be Hard of Hearing, it has given me such amazing friends and community. I hope that every person struggling with a new diagnosis regarding their hearing takes to heart that things can and will get better. There is a whole world out there waiting for you,filled with language and culture, and us Deaf/HoH girlies are here for you!
Thank you so much for reading about my journey! It has been a wild ride and I am so thankful to be where I am! Please follow me @saruhist and @forthedeafgirl on Instagram and be sure to reach out with anything!
