To hear the TV audio, I use both assistive listening technology, which works with a telecoil and more recently a Bluetooth transmitter. If I’m using assistive listening technology, it’s difficult to carry on a conversation without turning off the assistive listening device. It’s frustrating because I have to turn the system off to talk and then I have to turn it back on to watch the show.

When using Bluetooth, I'm supposed to be able to turn the audio streaming program on and off with manual controls on my hearing aids, except it doesn't always work. If the controls don't work, then that means I've got to pull out my phone, open the app and connect my hearing aids. That can take 30 seconds or longer. And in that time, I can lose my train of thought.

Sporting events are even worse. My husband just loves having people over. Last year, we had people in our house watching football every Sunday. I would just sit on the side and concentrate on listening to the game, because I really couldn't hear what everyone was saying, much less hear the conversation while also trying to listen to the game. Occasionally, I’d understand something that was being said but basically, I couldn't participate in the conversation, which is so frustrating.

I lived in a small apartment. When I’d have people over, if I went into my kitchen to get coffee or something, they would continue to talk to me. And I would think, well, that’s so rude, they know you can’t hear what’s being said when you go into another room. Finally, it took my partner to tell me I needed to get my hearing checked, because, in fact, others could hear things in situations that I couldn’t. It took some years before I really started wearing hearing aids but when I did, I was absolutely astounded at the things I could hear.

Even so, at first, I didn't want people to know that I had hearing aids or at least I didn't want that to be the first thing people thought about when they saw me – oh, there's that person with hearing aids. So, I hid them with my hairstyle. One time a hairdresser cut my hair too short, and you could see my hearing aids. I was just so upset. With time, I got over this completely, but it took some years, I guess into my 40s.

Now I'm an advocate for people with hearing loss. I'm a member of Hearing Loss Associate of America. I'm writing a book about people's experiences with hearing loss. I'm an advocate for hearing technology. And I am, as much as I can be, someone who is really trying to help others rid themselves of any stigma they feel because of their hearing loss and hearing aid use.

There continue to be caption quality issues particularly when it's a live television event that's not prerecorded. You can see a lot of errors. It's still a very real problem. Caption placement on the screen can also be problematic. Captions can show up in different places. There are times when the captions block you from viewing important information. For example, during an interview, the name of the person being interviewed may be shown but the captions cover up the name, so I won’t know who's talking if I didn’t catch that when they were first introduced.

I've experienced caption delay. If there’s a live conversation happening during a news segment and the captions are delayed, I might be able to identify who's talking. But sometimes the conversation gets very muddled because I’m not sure who's saying what. It can take a lot of mental bandwidth for me to sort that out.

Another annoyance is when captions get cut off when a TV program ends or goes to a commercial break. This happens with live television situations, but it can also happen with recorded programming. If the station goes to a commercial but the captions haven't finished displaying, they will simply be cut off, and I miss the end of whatever was being said. That part might have been the most important, interesting, or entertaining thing said, and it's gone. I've missed it!

Improving TV caption quality would definitely create a more equitable experience.

So, yes, using only my high-end hearing aid and cochlear implant, I can hear my audiologist in the quiet of her office or my wife sitting across from me at the dinner table with little effort. But in the real world of crowded restaurants, busy airports, sports arenas, rush hour traffic, etc. I struggle mightily even with hearing assistive features like noise suppression, directional microphones, and a speech-to-text app designed with people like me in mind. 

At times, these technologies actually make things worse. For example, in a restaurant, the remote microphone may pick up and amplify fragments of conversations of strangers at adjoining tables and the speech-to-text app may convert them to text on my phone.  That leaves me with few options – leaving the conversation (where that’s practical) or turning down (or off) my hearing devices and focusing on my own private thoughts. Differentiating the signal from noise – what we want to hear from what we don’t – and reinforcing the former is clearly a huge technical challenge.  But I can’t think of anything that would make my life easier.

We are this strange thing. We're not really hearing, and we may be deaf, but instead of using sign language, we depend on what little residual hearing we have. We have to explain that what we need is to enhance our access to audio and visual cues, and we often do that with technology in addition to our hearing aids or cochlear implants.

I can’t tell you how many times I have conversations that start like this:

At an event, where there’s a speaker giving a talk:

Me: Hi, I have hearing loss. I use technology to help me hear better. Would you mind using my remote microphone when you’re speaking to help me hear your presentation.

Speaker: I don’t allow my talks to be recorded.

Me: Let me explain…

At the hospital, when I’m having a test done:

Me: Hi, I have hearing loss. I use technology to help me hear better. I’ll need to use some assistive listening technology so I can follow what’s happening during the test.

Receptionist: I have no idea what you’re talking about.

Me: Let me explain…

At a restaurant, when ordering food:

Me: Hi, I have hearing loss. I use technology to help me hear better. I’m using an app on my phone so I can understand your description of the specials you have for dinner tonight.

Waiter: Oh, you don’t need to use that. I have a very loud voice, and people have no trouble hearing me.

Me: Let me explain…

For instance, I regularly adjust my hearing aid and Bluetooth remote microphone volume settings using my phone.  However, I cannot touch my phone while scrubbed in. Surgical scrub is an important sterilization process in the operating room to prevent infections so touching anything that is not sterile requires the individual to scrub in again. 

Theoretically, I could ask someone to adjust the settings for me, but finding the settings is not obvious to those who do not use them, sometimes I need settings to be changed several times in a short period of time, and I would prefer not to give someone else my phone.  I may be able to adjust the volume of my hearing aids myself, but that is still not optimal from a sterilization perspective.  In addition, adjusting the volume on my hearing aids does not enable me to change the settings of my Bluetooth remote microphone.  

Since my microphone is not sterile, it cannot be passed around and must be carefully worn by anyone scrubbed in.  So I’ve had some challenging considerations and decisions to make. Do I give the microphone to the attending physician and not hear anyone else in the room? Or, do I not use the remote microphone and only get parts of the conversation? In the end, I learned that like many other challenging environments when you have hearing loss, it depends.

The noise levels for each surgery vary based on the surgical team and procedure type.  At the start of a case, I assess the situation and decide what will work best for that case.  Usually, I carefully place my remote microphone in a way that does not break surgical scrub and is also positioned so it does not amplify any movement of the wearer’s gown.  To communicate with the rest of the team in the operating room, I rely on my residual hearing and make sure I’m as close to the speaker as possible.  Then, I may need to summarize my understanding of what is being said and ask people to repeat when necessary. While this approach has its limitations, it gives me the least listening fatigue and leads to the best results.