I don’t even know where to start, but I know I need to write about this to process all the emotions that I am feeling right now.
My company’s Culture Network shared the information for a live webcast on “Communicating with colleagues with hearing loss.” In a firm of over 35,000 employees and partners, it was distributed to a group of about 1,000 people (woof, but I guess we can’t win them all). Then – this is the terrible part – although I DID get the distribution, I completely missed it and only knew after a friend and coworker saw it and sent it to me. I excitedly thanked her and planned to attend! And then I missed it, AGAIN.
So here I am, four weeks later, taking a work training on disabilities in the workplace, when I realized that I had never watched the webcast. So, I watched it. Then I cried. For 31 years, I have had hearing loss and I’ve never really researched it, I’ve never reached out to others with hearing loss, and I’ve never even talked to another person with hearing loss about hearing loss.
The current emotions I’m feeling are shame, disappointment, anger, and sadness. How have I gone this entire time without ever, really, acknowledging and accepting my disability? Sure, I tell people often and make loads of jokes about it (if you can’t laugh, you’ll cry), but that’s it. Full stop. I don’t advocate for myself. I pretend it doesn’t bother me when I don’t hear the joke or miss half of a story. As of the time I wrote this post, I hadn’t even identified myself as someone with a disability to my company (that I’ve worked at for going on 10 years now).
I have severe to profound bilateral hearing loss/deafness.
My disability does not identify me, but it is a part of me.
Let me back up. You’ve heard of 20/20 vision but who can tell me what the standard measurement is for hearing? Guess what, I couldn’t tell you much more than “there is a chart, and it should look like this but mine looks like this and that just means it BAAAAD.”
So here is a quick and dirty rundown.
There are two types of hearing loss:
- Conductive – when sound cannot pass through the outer or middle ear
- Sensorineural – caused by damage to the inner ear or nerves
Some people have mixed.
There are four categories of hearing loss:
- Mild hearing loss or deafness – may hear some speech sounds, but soft sounds are hard to hear
- Moderate hearing loss or deafness – hears almost no speech when a person is talking at a normal level
- Severe hearing loss or deafness – hears no speech when a person is talking and only some loud sounds
- Profound hearing loss or deafness – hears no speech and only very loud sounds
Your hearing level is determined by the levels that you can hear in decibels at different frequencies on a scale of -10 to 110. Hearing levels between -10 to 20 are considered “normal” (what is normal anyways?). So, the equivalent of 20/20 vision is something like -10/-10 or 0/0 hearing. As your hearing levels increases, your hearing loss is more severe.
The results of a hearing test are graphed out on an audiogram with the hearing level in dB on the y-axis and frequencies on the x-axis. This is what it looks like.
Visit this awesome site to learn more about audiograms and this one to learn more about hearing loss.
Okay now that we’ve finished the science lesson, how does all of this apply to me?
I have sensorineural hearing loss that ranges up to 90 dB in my right ear and 100+ dB in my left ear. I’ve always been a straight-A student, but damn, I scored real low on this test. So, take a little peek at that chart above and know that my data points plot mossssstttly in the severe loss for my right ear and the profound loss in my left.
The doctors assume that I was born with hearing loss, but back in the stone age in 1991, they did not test the hearing of babies when they were born. I was four going on five before my hearing loss was diagnosed.
I have some funny stories and I can laugh about it. Some are sad and I can cry about it. [If you’re ever in the need of a good cry, watch babies get fitted for their first hearing aids. It is the most heartwarming thing that you’ll see today.] I digress. Let’s laugh about it (or cry – your choice). Story time!
1996
It was the year 1996 and this Barbie-loving chick was starting school. In kindergarten, students were given vision and hearing tests. I failed my hearing test. And so, a life of failure begins…
My mom took me to the ENT who had removed my tonsils just a couple of months before. He laughed in her face when she said that the school said I couldn’t hear and needed another hearing test. “I am a doctor in a fancy white coat, and I am so smart and would know if your daughter couldn’t hear when I worked with her this summer!!!” he proclaimed (or something like that). FOOLED THEM. It was true, I couldn’t hear. Mister doctor man was white as a ghost when he had to give my mom the news, so the story goes. She took me to another doctor for a second opinion, and I failed again. We finally accepted that I couldn’t hear but my mother was told that I was truly exceptional because, despite my hearing loss, I had learned to speak with no impediment and likely was already reading lips (so I guess I’ve been an overachiever all my life).
It came time to pick out my hearing aids and the actual device came in sexy colors of skin tones (tan and brown so at least people of color had options too). While I fought my mom to get colorful molds, hearing aids weren’t common and she worried for me, so she picked out a darker color that would blend in with my brown hair. The audiologist questioned her choice, but she stood by it. I would go on to proudly proclaim to anyone who would listen [and embarrass my mom at the same time so win-win] that “I had the ones that black people got.” What a delightful 5-year-old I was. Shoutout to my mom for standing her ground with her choice.
On the day I finally got my hearing aids, I excitedly told my mom on the car ride home that “I could hear the birdies.” She cried because she didn’t know I could never hear the birdies. I still cry any time I tell (or write) this story.
Earlier in 1996
I was a pageant girl if you can believe it. Started at the young age of 4 and was crowned Little Miss Chesapeake in 1998. Now, this was not a Toddlers and Tiaras thing…it was good-natured, sweet, young girls awkwardly walking around a stage. As a four-year-old, I had to have an interview (lolz) where I was seated in a chair about 6-8 feet away from a table of judges who would ask me questions. They recorded the videos for our parents to watch on VHS. My mom was probably mortified with the way that I acted because I would randomly shout out answers to questions that I was not asked. Her exact reaction was along the lines of “what the f*%k?” Looking back after we knew I had hearing loss, she had to laugh because it all made sense. Turns out I probably couldn’t hear them and was sitting too far away. I guess they found it charming.
1997-2009
There are plenty of stories between kindergarten and senior year. I remember being at a sleepover in elementary school and falling asleep first, only to find out the girls all tried my hearing aids on after I went to sleep. I felt a lot of emotions after that and was sad. I didn’t spend the night at that girl’s house again. I remember being in class when my hearing aid batteries would die and I did not have extras, that was fun. I remember when I got glasses in third grade, and everyone called me Helen Keller. I remember going to the pool and having to choose between being able to hear or being able to swim. On top of that, I was on the swim team, so I remember going through my practices in almost complete silence and needing special attention from the coach to give me directions separately. I remember when we played telephone in class, and I could never hear but the teachers made me play anyways. I remember being in dance class and my hearing aid flying out of my ear during pirouettes. I remember asking someone to put the subtitles on when we were watching TV and then she complained that it was annoying her the whole time.
2009
Hearing aids are expensive (try ~$5,000-6,000 expensive) and insurance never covered them. That kind of money was hard to come by so as a teenager, I made my second pair of hearing aids last far, far longer than they should have. The life of hearing aids is about five years. That’s $6,000 every five years (not including battery costs, which is a whole other story). WOOF. We didn’t have that, so I did what I had to do and kept it a secret from my mom. It got to a point where the plastic casing on my hearing aids was starting to disintegrate so I just taped them up and didn’t tell anyone. #grunge…or something. After 9 years, I could keep up the façade and it was time to move on to the next.
2015
Two years into my career and I woke up one morning to find that my hearing aid wasn’t working. We work a lot, I was tired, I was stressed, so I ignored it for a month then two then three then four then five. I finally went to the audiologist and told them that my hearing aid wasn’t working, and I hadn’t been wearing it. After testing the hearing aid, they shared that it was working just fine, and it was time to get me into the booth for another hearing test.
While my hearing had remained relatively stable throughout my life so far, when I was 24 years old, I lost the little bit of hearing I had in my left ear, overnight. My hearing was too far gone, it had changed from severe to profound hearing loss, and no hearing aids existed that were strong enough to amplify the sound for me.
This is a moment in my life I will never forget. I left the appointment and went back to work. I can still remember which client site I was at and who was in the room with me. I finally asked my manager to talk and in a room that reeked of cigarette smoke, I broke down and told him what happened. It was a hard time, and I mourned this loss for myself. I was terrified that it would happen in the other ear (I still am). My ENT put me through rounds and rounds of testing, only to come up with nothing. Just an “it happens sometimes.”
Fortunately, by 2015, the technology had improved, and I had options (well, option). A new device called a “cross aid” was available for me to wear in my left ear. It didn’t amplify sound in that ear, but it took in the sounds around that side of me and put it through my right ear. I guess that is pretty cool. And bonus – the cross-aid only costs $250, baby. Also in 2015, my insurance finally started covering a portion of the costs of hearing aids up to $3,000, so at last, the out-of-pocket cost was not impossible to pay. It was only a million years late, but we take the little wins.
2016
A coworker of three years and I were talking, and I said something about my new hearing aid. She looked me dead in the eyes and said that she didn’t know I couldn’t hear. Upon reminding her that I made deaf jokes ALL the time, she stopped and said she just thought I was making jokes to make jokes. JOKES. Don’t joke about having a disability if it’s not yours to joke about, I beg you.
A motion was passed that requires movie theaters to have captioning devices for those who need them. I rely on subtitles when watching anything because it helps me to hear and decipher the words that are being spoken. I now use one at every movie and it’s this fun clunky thing that everyone likes to stare at. But sometimes the theaters forgot to charge them, but that’s fine, I didn’t want to hear the movie anyways.
2017
I get song lyrics wrong a lot. It was embarrassing my entire life. In 2017, I finally embraced it when we figured out that I was singing very, very wrong lyrics to “Dust on the Bottle” by David Lee Murphy for 23 years and there was nothing to do but laugh.
2018
We often work in large, crowded conference rooms that can be very loud. My team has taken to loudly saying “she can’t hear you” any time someone tries to speak quietly at me to get my attention but also to remind my team to speak up.
2020
COVID happened which might be the worst thing for someone who reads lips. For the next two years, I’ll hear significantly less since we have to wear masks. I went into a store that had a sign for masks being required but also said (not required if you are hard of hearing). Wait what? I’m not the one that needs no mask on to speak to a receptionist, salesperson, server – I need to see THEIR lips. Clear masks were expensive and very uncommon. What was a supposed to do, buy them and hand them out to anyone I talk to?
I moved to California. With such a big move, I figured it was time for new hearing aids. I asked for the most high-tech hearing aid on the market (and then took the next level down because I couldn’t pay six grand for one hearing aid). The new one is pretty awesome – it has Bluetooth that connects to my phone. I take all my phone calls and listen to videos and music right through this thing that is a literal part of me. My friend calls me the bionic woman. It’s pretty badass.
I also decided to upgrade to the rechargeable hearing aid because hearing aid batteries are expensive at $1.25-$1.75 apiece and only last a whooping five to seven days, nine if I’m lucky – no thank you. Jokes on me, though, because if I forget to charge it through the night, it will die in the middle of the next day.
2021
One of my new CA best friends told me that she notices that when we are with other people, I often don’t hear things and I give off “stuck-up bitch vibes.” She’s the first person who has said it like it is and shared that when we are together, she is very conscious of what I do and do not hear so she can help or let other people know. I appreciate her.
2022
Hearing aid Barbie was released. I set an alarm two months in advance and bought her first thing that day. I was very proud to see her being included in the Barbie world && HER HEARING AIDS ARE PINK!
I was talking about getting a park pass to visit the national parks when my mom mentioned that they have a pass I could apply for that is for people with disabilities. I turned to her and said, “but this isn’t, like, a real, reallll disability.” After 25 years, I still felt that it wasn’t the same as other disabilities. Props to me for not letting it define me, but bad on me for not accepting it for what it truly is. I went on the park pass website and hearing loss was explicitly listed as one of the examples. I applied for the damn park pass and got it, so at least I can access national parks for free now.
2023
Hello, 2023. Here we are. For a person that has advocated for diversity, equity, and inclusion for others always and is extremely vocal about de-stigmatizing mental health (that’s a completely different story), I do a lot of things to make people (and myself) feel more comfortable when my hearing loss makes the situation uncomfortable. I am finally going to advocate for myself and call my disability for what it is – a disability that I live with. I guess this is a year of acceptance and the webcast give me the last kick in the pants that I needed.
I didn’t know that your hearing worsens as stress levels increase (this explains a LOT) or that a hearing aid only amplifies sound – it does not correct your hearing to “normal levels” (which also explains a lot).
Some things that resonated with me that people probably don’t know:
- I often don’t speak if I am worried that I am going to say something out of context, especially since I also deal with mental illness including anxiety
- Once someone has repeated themselves several times, I smile and laugh and hope it was funny
- I can’t hear people who whisper or mumble but feel like a jerk for telling them to talk louder
- I don’t know how loud or quietly I am talking and sometimes just need a gentle nudge if my volume isn’t quite right
- I extract myself from conversations a lot and sit in silence smiling and nodding when I can’t follow what is going on
- My ears itch ALL THE TIME
I ask, encourage, beg you to take an hour to watch this webcast (or at least read the slides). Then, spend 15 minutes on the demo website to hear what hearing loss is like. Take just a moment to experience my every day and learn ways that we can better communicate. We’ll all be better for it.
