When Were You Most Seen by an Audiologist?

My sister, Kelly Bourque, and I presented at the American Academy of Audiology Conference in St. Louis the last week of March in 2022. We are not audiologists. Why were we there? Why did the conference accept our abstract submission? Let me tell you the story…

Several months before the presentation, my sister called me, crying. She had just been fitted with her new hearing aids and was driving home from the appointment. Honestly, I didn’t even need to know more than that to understand why she was crying, because for some reason going to the audiologist almost always triggers tears for us. These are not happy “I can hear!” disability porn tears. These are “why is this so hard, why does this affect me this way every time?!” tears. Kelly and I grew up going to audiology offices. We were fitted with our first hearing aids when she was 5 and I was 2. I don’t remember not wearing hearing aids. We were born with bilateral nerve deafness, and when you are born in the late 70s, early 80s, there isn’t an infant hearing screening. It took my mom years to get a proper diagnosis. I remember when my children passed this hearing screening- the sense of immediate relief and gratitude.

I’m not saying that having hearing loss is a terrible thing, I’m saying it’s a hard thing.

Back to the crying phone call. Kelly had been trying to troubleshoot a bluetooth issue with her audiologist and then eventually the front-desk staff who was “better at the bluetooth technology.” The whole ordeal of trying to get something so simple (yet technologically complex and ultimately impossible) was so hard, humiliating, vulnerable, and more. She said to me: “I felt like I was asking too much, like I was a problem, and yet at the same time, what I want is so basic, and it shouldn’t be this hard!”

It shouldn’t be this hard. That statement got our wheels turning. We thought- why IS this so hard? In all honesty, the audiologist and front desk person were trying their hardest to fix a problem Kelly had with her hearing aids. They had no idea that it was so triggering and raw for Kelly. There’s no way they could have known. Just like my last hearing test when the audiologist stuck me in the booth and told me to say yes or no or raise my hand when I heard the beep. I was so used to pushing a button in response that I was completely thrown off. I focus and concentrate so hard during a hearing test that when they asked me to move my body or speak- it was simply too much. It was so so hard and I held back my tears until I got in the car and called Kelly, crying.

It shouldn’t be this hard. What’s missing? What is the disconnect? Kelly and I starting brainstorming about ways to help patients. We could be patient advocates, go in the appointment with them as people who have been there, done that. But then we realized that didn’t change much, and we’re just two people with full lives, this wasn’t sustainable. What if we had the chance to teach a course at an audiology school? How the heck could we do that and what would we teach? How would we even go about getting there?

We kept brainstorming until we landed on this: we needed to get in front of a room of audiologists and tell them our story and give them some tools for how to make it better. We didn’t even know how that was going to happen or even what exactly the tools would be, we just knew that we had the experience to do something to help bridge the gap between the audiology field and the patients they serve.

Kelly started talking about her experience more and what she needed in that moment, and a light bulb went off: she could bridge her professional experience as a therapist (who uses neuroscience research to inform her practice) and her personal experience as someone with hearing loss. I joined in, I had my own personal experience to add, as well as professional experience as a hospice chaplain working in a clinical setting and with patients and families who are going through challenging experiences. It started coming together.

The two of us had something to offer the field of audiology! Would they listen? Would they see the value?

Kelly and I both did a little research on the side until Kelly emailed me with a proposition: the American Academy of Audiologists were having a conference in March and they were seeking abstracts for presentations. Kelly and I got to work putting together our abstract, using a neuroscience concept that would be easily accessible to audiologists. The more we worked on it, the more we got excited and realized that we had something really valuable here. We submitted the abstract and waited.

We were accepted! They accepted our abstract and we were invited to present a learning module, a one hour presentation, of our information. We got back to work and spent countless hours fine tuning the presentation until it was a work of art (if I may say so). We rehearsed it, clarified and simplified until it was clear and powerful. We were ready.

On Wednesday, March 30, 2022, Kelly drove 7 hours (what should have been 5) through torrential rain and thunderstorms from Nashville to St. Louis. I flew from DC, the first time flying with my new service dog. I’m a nervous flyer and that same storm system offered plenty of bumps on the way in. Marley, my service dog, was a welcome comfort. She’s a hearing dog, but her gifts are many! Kelly picked me up two hours late (because of her unexpected traffic/rain hold up) and we collapsed finally into our hotel room that evening. We ventured out briefly for food and to give Marley a potty break on the only patch of grass a few blocks away. That night we rehearsed the talk two more times, determined to make this trip worth it.

Thursday, March 31, the day of our talk, we walked to the conference center next to our hotel and checked in, got our presenter badges, and it all felt so official, so organized! A bit intimidating. We went by the presenter/practice room to check out the equipment and make sure our presentation was in the system and we knew how to work the technology. The people in the room were so helpful and lowered their masks so we could read their lips.

After we left the room Kelly said “I feel safe here. Like, I didn’t have to ask them to lower their masks, they just knew and did it.” We both marveled at how simple and profound a small act like that was for us. (Also, the conference had a vaccine requirement for attendance, so we felt safe that way as well.)

After that we scoped out our presentation room by peering in through the open door while another presenter was in session. (Sorry presenter for our creepy stalker vibes, we were casing the joint!) We saw the big stage, the big room, the many chairs and had a mini panic. These folks don’t know us! Will anyone show up?! We’re after the lunch break! Will they stay awake?! AAAHHH!

Then we took a bunch of pictures in front of signs looking VERY confident despite our prior mini freak out.

We walked through the expo hall, talked way too long with a nice woman selling ergonomic chairs (I admit I sat in one of those comfy chairs the whole time and I was not upset about it). We got ourselves a light lunch and went back to the hotel for a light rest and mental re-set before our presentation. (This was mostly for me, an introvert and Enneagram 5 who needed to recharge after being with people for longer than 45 minutes.)

Then, it was time. We went to our room, used the time we had (folks were still on lunch break) to walk through the logistics of microphones and who stands where. I took Marley for a last minute potty break (and myself), and 15 minutes before our session, folks started arriving. Then more, then more. We had at least 80 folks when we started and more trickled in during the first 15 minutes.

I honestly cannot even tell you exactly what I said except that we just – DID IT. We were ON it and the audience was AMAZING. Everything flowed, the energy was incredible and I felt like we just floated through the hour. It was…. FUN. ??? Not what I was expecting but it genuinely was. Kelly and I were in love with our audience by the time the session was over and didn’t want it to end. We had time for two questions before needing to adjourn so the next presenter could set up. The first question was a great question, exactly what we would expect from an active participant.

The second question. It surprised us.

The second question was offered by an audiology student who thanked us for our talk and then asked: “Can you tell us a time when you two felt most seen by your audiologist?” Kelly and I were stunned silent. I repeated the question back: “You want to know when we felt most seen by an audiologist?” Kelly had her answer first, she remembered the audiologist fitting her with her hearing aids when she was pregnant with her daughter. The audiologist said “I want to get this right, I want you to hear all your baby’s sounds.” Kelly teared up telling that story, so did I. Then it was my turn. I told the audience about the audiologist in Florida who saw me as a normal person, who understood that I had been wearing hearing aids my whole life and I knew a lot about them and what I needed them to do for me. She wasn’t fixing me, she collaborated with me to get the best outcome. I teared up, unexpectedly (I am working on being more emotive). There were tears in the audience, they clapped, I felt amazing.

I felt seen.

I realized, many days after this presentation, after my sister and I relived the moments over and over again, that I actually have a different answer for that wonderful student. When did I most feel seen by an audiologist? Then. That moment, when she asked. When the group engaged in our material and took our experience seriously. When they wanted to know how we felt and what we had to offer. I felt so, so seen.

I am grateful for that moment, and I’m excited because our journey is just beginning. Kelly and I feel so strongly about our material and the ability for it to impact the field of audiology (and more- so many practical applications!), and we’re thrilled to be asked to speak at other conferences and meetings. We feel seen. And I hope that the audiologists in that session felt seen as well. This is not easy work that they do. Together we can make it a little less hard for everyone.