‘My husband asked, ‘Why are you crying?’ It was the first time I’d EVER heard every word to a movie.’: Woman with hearing loss advocates for early intervention

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“I am deaf and hard of hearing. Most hearing people say, ‘How can you be both? You must be deaf.’ Most deaf people say, ‘You are hearing, you don’t fit in our world.’ I feel like I stand on the fringes of both of these worlds. My hearing loss happened because my mom had rubella when she was pregnant with me. This was before the MMR vaccine was even a thing. My father happened to be in Vietnam at the time. The doctors gave my mom the choice of aborting me or having me go full term. They gave my mom some ideas as to what could be wrong with me. These ranged from severe learning delays, Down syndrome, a hole in my heart, to being deaf, blind, or both. Understand that my brother was just over a year old at the time, so she had a toddler, a husband away at war, and me with potential issues in her belly. She chose not to abort, and we are all happy this was the choice!

Back in the late 60s, they didn’t do a lot of testing on infants when they were born, and I was born in a small town in Indiana, so there wasn’t much in the way of care if something was really wrong when I was born. My hearing issues went unchecked for many years. About the age of 4, my grandma called us (yes, on our rotary phone). Mom handed me the phone. I put it up to my deaf ear (not knowing it was deaf) and then handed the phone back and said, ‘Grandma’s not there.’ Mom talked to Grandma and looked at me and said, ‘Yes she is.’ This encounter was the beginning of years of going into the dreaded hearing booth. The doctor who treated me opted for a stapedectomy (replacing some middle ear parts). My mom says I was so embarrassed by the big round cone they put on my ear after surgery I didn’t want to be seen until it came off. After all of this, it still didn’t work. I remained deaf in one ear and also had hearing loss in my other ear.

Hearing aids only amplified sound at the time, which wouldn’t have helped my hearing loss. Mom did inquire whether I should learn American Sign Language or get special services at school. The doctor looked at her and said, ‘No. What, do you want her to be viewed as disabled?’ My mom and I regret she listened to the doctor at this time. I wonder how life would have gone if I had learned ASL or gotten some special instruction in my early years. My speech patterns started getting a bit wonky. I couldn’t hear the ends of words or certain letters at the end of certain words, so I wouldn’t say them. Eventually, I didn’t even know how to say them. I sounded like I was a true Boston native, as I would always drop the letter R at the end of a word. ‘Car’ would be ‘ca,’ ‘park’ would be ‘pak.’ I didn’t know I sounded different, as I was saying what I heard. But this got me into speech therapy at school. I was probably 9 or 10 years old, so I had already missed some of the very informative years of learning words and language.

Woman wearing mask advocating for hearing loss
Courtesy of Amy Meservey

I hated being pulled out of class for speech. They would sit me in the hall (or a room with the door open) with a speech therapist. My fragile young mind would hate when other kids walked by and saw what was happening and how I was struggling. I kept doing it, though. Now people say, ‘You don’t sound deaf.’ Ugh, if they only knew. I was so shy during my teen years. It stemmed mainly from not being able to hear or follow conversations. I felt like a fly on the wall, but a fly that literally had no clue what was going on. I read lips when people would face me but relied so much on visual cues that it made it hard to go to the movies when much of the movie was dark (think horror films) and the actors would turn their backs to the camera and talk. And I had a boyfriend (now husband) who loved to talk during a film. I quickly learned to sit him on my deaf side so I could just ignore his chatter while I tried to hear the movie.

College was much the same. I learned some of the tricks, like always sitting upfront and on the side of the classroom so my good ear was facing the instructor. My hardest classes were language classes (I could hardly hear and understand English, not sure why everyone thought I could understand another language) and big lectures. I recall a great class called Judeo-Christian Tradition. I loved the premise of the class, but with over 300 people in the lecture, I had to rely on the break-out groups to even understand what the professor was saying. It made learning super difficult The University of Iowa was where I attended college. It was the first university hospital to do a cochlear implant with multiple channels on an adult in 1983… 3 years before I got to the university. I heard a lot about cochlear implants but was always told I wasn’t a candidate because I could hear out of my other ear. But, but, but… I wanted full hearing. What does stereo sound like? What does a car coming from that direction sound like? Sweet nothings?

I worked at a major corporation in the summer during college. They required a hearing test as part of the hiring process. The hearing tester put me in a booth. I told her about my hearing issues. She said, ‘We’ll have to test your deaf ear anyway.’ She had the volume turned all the way up while testing my deaf ear. I whipped the headphones off and said, ‘If I wasn’t already deaf in that ear, I am now! What are you doing, trying to kill me through a hearing test?’ She apologized profusely, but my head was ringing. Gosh, fast forward almost 16 years later… my son was 2 at this time. He was delayed in speaking, so of course, I worried he had hearing loss. I made an appointment with him at an audiologist’s office. As I was sitting there, I read something in the booth about inner-ear testing (ears are made of three sections, the outer ear is what we see on the outside, the middle ear is where the hammer, anvil, and drum are, and the inner ear is where your cochlear membrane is).

Bald woman taking selfie in front of brick wall
Courtesy of Amy Meservey

My hearing loss is inner-ear loss. I asked the audiologist what the testing was all about, and she encouraged me to come in for my own testing. My son’s hearing was just fine, so he got a speech therapist through early intervention (learned from my mistake as a kid) and we found out he just wanted his speech to be perfect so he wouldn’t talk. I made an appointment with the audiologist and she determined the loss in my ‘good’ ear was bad enough to be helped by a digital hearing aid. I was ecstatic. She told me the choices available at the time. I told her I want the biggest, most obnoxious-looking hearing aid possible. She was confused, why would anyone want that? I told her it is because I am tired of telling people I have hearing loss. It is awkward to just meet someone and walk up to them and say, ‘Hi, I’m Amy and I’m deaf, so you need to look at me when you talk and speak clearly.’ At least with a big hearing aid, they would know something is up.

She eventually got me to get an in-the-ear hearing aid, which unless you look into my ear you wouldn’t even know I had one. Getting the mold for it was super weird. They pour a substance like wax into your ear canal and it has to firm up. I was 100% deaf while it was in my ear. The world felt so different. The aid helped me not be so shy. I became more outgoing, but large group settings were still very hard. 5 years later, I got my hearing aid upgraded. I ended up getting a behind-the-ear aid as my hearing was a bit worse than it was five years before and needed more help with hearing. 4 years after, I got an even more upgraded hearing aid. This one had bells and whistles (no, it didn’t give me tinnitus). It had T-coil capabilities so I can hook into a telecoil system at a stadium, movie theater, church, etc., and be able to hear clearly in my aid. This was also when Bluetooth technology on hearing aids came out. With the purchase of a couple of extra accessories, I could stream the TV and my phone right to my hearing aid.

Bald woman showing off hearing aid
Courtesy of Amy Meservey

I got it in a bright red to show off my aid. The first movie I streamed to my aid was ‘Paul.’ This was about an alien who was a sarcastic character trying to get back to his mothership. My husband was laughing through the movie. He eventually looked at me and saw me crying. He asked me why. I had to explain it was the first time I had ever EVER heard every word to a movie. I very rarely watch TV now without streaming and closed captioning on. Now, anytime I don’t hear someone or understand what they are saying, they say, ‘Amy, do you have your ear in?’ I have to remind people yes, I may, but it doesn’t give me 100% hearing and I am still half-deaf. Then I’m back to the, ‘Well, you can hear or you can’t converse.’ I’ve even had people say, ‘You don’t look deaf.’ Well, what does deaf look like? Think about that. Also, hearing devices are REALLY expensive. And oftentimes insurance does not cover them. They are considered cosmetic, not a medical necessity. I’ll bet the people who decided this didn’t have hearing loss.

I was lucky enough my first hearing aid was covered by my husband’s insurance. But all of the others after I paid out of pocket for. We are talking upward of $4,000+ for ONE aid. NO wonder people don’t get them. I also have alopecia universalis. This is an autoimmune disease that renders me hairless. My body rejects my hair follicles. I am a support group leader for the National Alopecia Areata Foundation in the Chicagoland area. I’m only telling you this because I decided to remain bald and not wear a wig. So, now, not only do I have hearing loss, but I am bald, too. I eventually got so tired of people forgetting which side was my deaf side or even just forgetting I am part-deaf, I got a tattoo behind my deaf ear that reads, ‘Out of Order.’ Seeing as no hair covered it, people comment on it and ask what it means. It opens up the conversation of, ‘That’s my deaf ear,’ and makes an easier conversation starter for talking to people about my hearing loss and my hair loss. Education is always key!

Bald woman showing off hearing aid and behind-the-ear tattoo
Courtesy of Amy Meservey

Now, fast forward to 2019. I met a wonderful woman who was also hard of hearing. She talked me into joining her team for the WALK4HEARING in Chicago. We raised money, and on walk day it was about 40 and rainy/windy in the city. Ugh. My son and I both went. This walk was life-changing for me. There were booths with vendors who help with hearing loss. I immediately signed up for a captioned landline phone (these are free to anyone with hearing loss), signed up for a mail-order hearing aid battery subscription, and then talked to a rep at Cochlear Americas (one of the three major cochlear name brands in the US). Meghan at the booth encouraged me to talk to a cochlear audiologist and get an evaluation. I told her I thought I’d never be a candidate. She said, ‘Just try.’ My son said, ‘What would it hurt, Mom? You always say you’d love hearing.’ I went to a cochlear audiologist about 3 weeks later and was told I was a candidate for an implant. I was so excited, I was shaking. About a week later, I met with the most wonderful ENT surgeon, and 6 weeks after, I had my surgery.

There is a 4-week delay from surgery to activation (when they give you the external processor and map [program]), thus ‘turning you on.’ The day of activation came and I was super nervous. What if it didn’t work, what if all of the recoveries were for not? I had been told by my audiologist and surgeon because I never heard out of this ear, I may be able to hear environmental sounds such as wind, birds, rain, etc., but, may never be able to make out words. I was okay with it. I got turned on (mind out of the gutter, please). I heard a noise. It was beeps and whistles, much like old dial-up internet would be. I didn’t even know it was sound. Then people started talking. No, I couldn’t understand them, but I could hear when words were spoken and when different people were speaking (the sounds had different tones). From where there used to be no sound, there now was sound.

Bald woman wearing beanie taking smiling selfie in front of brick wall
Courtesy of Amy Meservey

I belong to a cochlear implant Facebook Group, which is super encouraging. They say we CI people all know the day of our surgery and the day of our activation like it was a birthday. It was a birthday of sound. For me, over a year later, I still can’t make out words. I have a sense of sound and fullness. I also got a new hearing aid, thanks to a little financial help from my folks, that pairs with my implant. So, now I can stream the TV and my phone right to both devices. I ‘hear’ in stereo for the first time. I can tell if someone is approaching me on my implanted side. I can hear a car approaching from my deaf side. I can hear the tick of a clock. (Man, pots and pans banging are LOUD.) Life has taken on a new sense of loudness. But hearing fatigue is a real thing. If I wear my processor all day, it is almost a relief to take it off.

Think of it like my brain is trying to learn sounds the whole time it is on, similar to having to do physical therapy if you have a medical issue. Except physical therapy is usually an hour or two a day. Hearing is ALL day. It often causes me headaches by the end of the day, but, worth it. So, here I am—a bald woman with a cochlear implant. So, what do I do? I decorate my implant with skins (vinyl removable stickers) and charms to make it stand out even more. I am proud of my journey and I don’t have any problem showing and telling people. I created an Esty store with a fellow CI recipient who lives in Australia. Our goal is to sell charms/skins to make money to give away charms and skins to those who are being bullied or are embarrassed about their hearing loss. Maybe I’ll need to print a copy of this story and send it to them so people understand they should be proud. I have definitely given away more charms/skins than I have sold.

Woman showing off decorated cochlear implant
Courtesy of Amy Meservey

I have people who are generous enough to send me donations to make and send even more. My favorite days are ones where someone who received a charm or skin sends me a picture of how much they love it and how much others admire it. Our stores are called DEAFdefying. Mine is DEAFdefyingUSA and hers is DEAFdefyingAUS. We wish to make every CI recipient proud. Now I am on the next stage of my hearing journey. I am trying to get a hearing service dog. If you think implants and hearing aids are expensive, a hearing dog is even more so! There are groups that raise funds to be able to award someone a free dog, but those are hard to get accepted into. Why do I want a dog? Well, I still don’t hear the doorbell if I have my hearing devices off (and sometimes when they are on), I don’t hear my phone or the oven timer ding, my name being called when in a loud environment, etc. A hearing dog could help me with those things.

My biggest turning point in wanting a hearing dog was when I was at a National Sales Meeting. I organize and run the meeting, so it is long hours with little sleep. The one night I had available to go to bed early and get 8 hours of sleep instead of 3 hours, my daughter tried calling me because her emotional support animal had died. I didn’t hear my phone. She said she tried calling for at least 30 minutes. My folks kept trying to call me. I finally felt the bed buzz a bit and answered. But what an awful feeling to know I wasn’t able to hear her call to calm her down. It will forever stick in my mind.

I don’t fit in the deaf world, as I don’t know ASL, and I don’t fit in the hearing world, as I can’t fully hear. I belong in my cochlear implant world. They have been the most exceptionally loving bunch of people. I thank them from the bottom of my heart. NO longer am I a fly on the wall. Hearing is important to get tested. Early intervention may be able to help.”

Bald woman standing in office smiling
Courtesy of Amy Meservey

This story was submitted to Love What Matters by Amy Meservey of Crystal Lake, Illinois. You can her their journey on Instagram and Facebook. Find her Etsy store here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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