20 Years Special…

It’s kind of hard to believe it has been 20 years. It’s even harder to believe that it has been 24 years that I have been on this Earth. God makes every single one of us unique. Some have their special trait from the moment we were born, as was in my case, and some that come to us as we grow up; I’ve received those blessings from heaven too.

On September 28, 2000, my parents were dealt a life-altering blow to the family. My mom cried in sorrow since my grandmother’s and her intuition over the last couple of months was, in fact, correct. My dad vehemently denied that I had any hearing loss calling it “behavioral” to turn my right ear toward the speaker and not respond to noisy stimuli behind my heads. The diagnosis would end up being bilateral, moderate-severe sensorineural hearing loss. When we sought a second opinion, the surgeon said I would not be a cochlear implant candidate. He would do the same thing nine years later, right before I got my first implant. I remember crying so hard when he refused to implant me. I knew I couldn’t hear, and it was only getting worse.

My diagnosis would later prompt Evan’s diagnosis coming down my dad’s side of the family. My dad was a “functional person with a hearing loss that declined to wear them forever,” and Lord knows Evan’s hearing aids spent more time at the bottom of his backpack… Thank goodness for warranties and returns. He wasn’t ready, and some people just never are or take YEARS to get what they need. My grandma, one uncle, my grandma’s siblings, and her parents all had a known hearing loss (even though it was not a treatable condition in 19th century Ireland). No one is escaping genetics here!

Sadly, in the United States, it is so complicated and expensive to get hearing aids. Expensive commercial insurance simply doesn’t cover hearing aids or cochlear implants AT ALL! Anyone that needs hearing aids or cochlear implants will need to have state Medicaid (MA) to have any chance of getting the assistive technology they need. Obtaining Medicaid is a pain in the butt, depending on the state. I literally have to tell the Social Security Administration each year when I renew my MA, “Congratulations! It’s been another year that I am alive and profound deafness hasn’t been cured yet. Talk to you next year!” (with all the sarcasm in the world)

Science tells us that our world is getting louder. It also warns that noise levels that were previously considered “safe” are hardly safe and can cause a hearing loss with “modestly” noisy, steady auditory input, like mowing a large lawn. Even some office buildings push the limits of auditory “safeness” for lack of a better phrase. Long-term hearing loss that goes untreated seems to be causing increased levels of mental health disorders, obesity, heart disease, and other medical problems that can be avoided with regular treatment. The additional health risks are why we all need to have our hearing tested regularly!

In the 20 years since my diagnosis, God has brought several people into my life to “teach me” how to compensate for a sense that I lack entirely without my cochlear implants. When I was little, I played in a junior golfing league with a cochlear implant recipient named Ben. Ben was born with a bit less hearing than me. He had Cochlear Americas Nucleus 22 implants from the Cleveland Clinic (at this time, Children’s Hospital in Pittsburgh did not perform the surgery just yet). He was exactly like me in that he couldn’t hear, played every sport you could imagine, and was a friendly kid. Being deaf was not going to stop him.

My parents (erhm, I mean my mom) filed my MA for the first time, and they have filed it for the 19 years since. I find it funny that when she filed for the original MA, she had to physically go to the local SSA office in Johnstown since it was the dinosaur age before people really used (or even really had computers). I am pretty sure the only reason we had one at the turn of the century was because my mom was finishing up her master’s degree. However, only when we moved to South Carolina did I take over responsibility for MA maintenance. It is a huge responsibility because you can’t let it go, as it is a pain to get back. There’s never been anything I have been told I really can’t do (and really, really shouldn’t), and that is singing. I just wasn’t gifted with the ability to carry a tune in the bucket. Oh well, musical theater was fun while it lasted!

Throughout my early school years, I struggled. At my 3-year-old kindergarten graduation, I looked miserable as I search the crowd for visual cues. I struggled through 4-year-old kindergarten, only to fall on the low end of the math analysis skills section and average on reading and comprehension. I was not doing so hot when it came to academic achievement predictions. By first grade, my parents were told that I could be with the accelerated language arts group. Still, my parents were worried about my classroom success, so I stayed on the regular path. This is the ONLY time my parents said “No” to anything solely on the grounds of my hearing. The support for me has been INCREDIBLE when it comes to my deafness and cochlear implants from them! They’ve amazed me!

My early intervention specialists, sign language teachers, hearing support teachers, hearing support audiologists, general audiologists, ENTs, and cochlear implant surgeons have all had a vital role in getting me to where I am today. Shoutout to Mrs. V for teaching me how to interpret audiograms, the meanings of IDEA and FAPE, IEPs, accommodations, self-advocacy, and so much more! 

Some of my friends have come and gone, as some people do in our lives, but those who never cared about the hearing loss and all the other accoutrements that make me me have stuck around. Life was miserable as a kid trying to create and sustain meaningful relationships with my friends. When you’re deaf like I am, you’re not in the “hearing world,” but you’re also not in the “deaf world.” You are in some existential “middle world” that is always trying to pull you to one end of the spectrum. This is where I am thankful that I have a wonderful friend of almost 12 years, half my life, to explain my frustrations and obtain encouragement from someone else who truly “gets it.” 

The great news? If I had been born to the exact same parents under the exact same circumstances in the last five years or so, I likely would have had a cochlear implant before the age of one. As science continues to evolve and observations are made, surgeons realize that earlier is better when it comes to maximizing hearing, especially in that prelingual phase. Today’s cochlear implants and technology are the work of many people for the last roughly 35 years. Being deaf or hard of hearing is slowly but surely becoming less of an” invisible disability.” Maybe I am just eternally optimistic that life with a hearing loss will become more accessible for people as technology advances. Still, one thing is for sure: researchers and hearing aid/cochlear implant developers are working as fast as they can to improve the quality of life of current deaf and hard of hearing people and those that will have hearing loss in the future.

My name is Meghan Bayer. I have been deaf since birth. I wear bilateral cochlear implants. I can read lips and talk with my hands. What’s your superpower?

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