February 16, 2024 – Elaine White

February 16, 2024: Retired educator Elaine White tells about adjusting to progressive hearing loss. Listen here.

The following transcript was produced by Mobilize Waco board vice president Suzette May.

Living It with Elaine White

INTRODUCTION:	(Music in the background) The best way to understand disability is to learn from people living it. Every third Friday, Living It features conversations with our disabled neighbors about the challenges and joys of navigating life in our community. Our host is Meg Wallace, director and organizer of Mobilize Waco, a disability justice coalition working toward full participation and leadership by people with disabilities in the Waco area.  On this episode, Meg welcomes Elaine White, who is dealing with progressive hearing loss.
MEG:	Welcome, Elaine. Tell us a little about yourself and how you came to be a Wacoan. (Music fades)
ELAINE:	Well, I’m a retired educator. I taught high school choir, high school English,  and University English education, and ended up in Southern Mississippi and when it was time to retire, I wanted to be closer to family and this is exactly halfway between my children.
MEG:	Perfect. I…I remember you telling me that you loved living in Mississippi but toward the end of your time there, you have some really rough experiences- a bit of weather and an illness.
ELAINE:	Yes, a bit of weather, Hurricane Katrina and then after that, spinal meningitis and that’s what precipitated my hearing loss.
MEG:	So tell me about that experience with your…with…well, both if you want.
ELAINE:	Well, Hurricane Katrina was so much fun. Recovery was awful. They kept saying we’ll come back stronger but we came back more exhausted and my husband and I decided if there were ever another hurricane headed toward the coast, we were just going to pack our car and leave. (laughs) It was that exhausting and then, of course, the hearing loss really kind of changed the direction of my life in some ways. I love to do classroom discussions and could no longer hear my students and so that became a real challenge and also factored into retirement. I thought I would do adjunct teaching and that’s not a possibility because I just cannot hear in the classroom.
MEG:	Yeah. How did…spinal meningitis?
ELAINE:	Yes, and the medicine that they gave me to cure the spinal meningitis damaged my hearing.
MEG:	Wow. Okay, and I remember also that you really loved music.
ELAINE:	Oh, I do love music-
MEG:	-and your husband is a musician?
ELAINE:	He is. He’s a saxophonist and a vocalist.
MEG:	Wow. So, how has your experience of music changed?
ELAINE:	Oh. Music is an experience that I’ve just put in a box and set up on a shelf because I can’t hear and when I do hear things, they’re jumbled. They’re…I hear different frequencies. I’ll tell you a quick story.
MEG:	Sure.
ELAINE:	I love to sing along with a radio in the car and so as we travel, we listen to things and I’ll just be singing or humming and then I’ll notice my husband’s gotten really quiet and I look over and I say, “Am I off key?” and he’ll shake his head, yes, because what I’m hearing are overtones. I can’t actually hear the melody line, quite frequently.
MEG:	Wow.
ELAINE:	Happens in church and I can really embarrass myself quickly.
MEG:	Well, that’s actually a good segway to my next question, because I was wondering if you could tell us, how did that carry over into your experience of church life, where it’s music but it’s a lot else too?
ELAINE:	It is there’s a lot of white noise I guess is the way you would describe it to someone who can hear just things that interfere with hearing and our Sanctuary is one big echo chamber for me so I fortunately sometimes I can adjust my hearing aids so that I can hear some of it but I miss a lot of jokes that people tell each other or funny stories. I’ll hear laughter and so I’ll smile along with them to be sociable but I really don’t know what it is we’re laughing at.
MEG:	That’s gotta really be frustrating.
ELAINE:	It is but I had a sweet Pastor who recognizes my difficulties and she gives me a copy of her sermon each Sunday morning so I can read along with what she’s sharing with the congregation.
MEG:	So that’s really got to be helpful. So help the listeners understand a little bit. We’re sitting in a studio and we both have microphones in front of us and so, you’re not reading my lips.
ELAINE:	Not at the moment.
MEG:	So, tell us kinda how you put it all together.
ELAINE:	Oh, It can be exhausting. I read people’s facial expressions, their body language. The hearing aids help but they only work with what you have left, the hearing you have left, so they don’t really replace hearing so there’s still a lot of guessing and I’m learning to read lips because my audiologist told me that eventually the hearing aids will not be effective so, you know, long term I need to learn how to do that. People with mustaches and beards are especially challenging. (laughs)
MEG:	Doesn’t Louis have a mustache and beard?
ELAINE:	He does but he trims it so well so I can read his lips.
MEG:	(laughs) Well good. Good. Do you ever think about learning sign language?
ELAINE:	I have considered it. My granddaughter wanted to teach me but there aren’t enough people who use it that I think it’s going to be beneficial for me.
MEG:	That makes sense. I kind of wonder if you and Louis will develop, like, signs that you use between yourself.
ELAINE:	You know, that’s interesting. We already finish each other’s sentences so maybe it will be more like telepathy.
MEG:	That could happen. That could happen. So in the meantime, you have grandchildren, growing grandchildren,  and you also…your father is still living?
ELAINE:	Yes, he’s 98 and lives alone at home.
MEG:	Wow. He’s doing great. So, how does this play out in your family life?
ELAINE:	oh, it’s funny. Some of my family members I just can’t hear. They…they think that speaking louder is what I need and that just distorts their speech even more. So, once again, I watch, and watch, and watch, and pick up on social cues, body language so that I know what’s going on. My family is pretty patient with me. Louis, especially. He doesn’t mind repeating things and generally I’ll put my hearing aids in about…between 7 and 8 in the morning and then take them out about 9 o’clock because by then I’m just exhausted from trying to hear all day.
MEG:	So, it’s really, really tiring?
ELAINE:	It’s grueling. It can be.
MEG:	So, you enjoy going out to restaurants.
ELAINE:	Yes.
MEG:	Do you enjoy things like movies and plays and other kinds of entertainment?
ELAINE:	No. (laughs)
MEG:	No? (laughs) Say more about that.
ELAINE:	I can’t hear and we have gone…we take our grandchildren to events and some of the really good plays in Waco and I just have not heard a thing. It’s like a waste of my money but I go because of them.
MEG:	Right. So…so, I think you’re pointing out something that…that we all need to know. There are technologies that can help with that.
ELAINE:	There are.
MEG:	Yeah, there’s FM systems and things like that and so you’re finding that mostly they have not been employed here in Waco.
ELAINE:	Yes. I will tell you this though. I’m a member of the Baylor Lifelong Learners and we have many sessions at the Mayborn Theater and they have a system that if people can…those presenters can use their laptops when they do their presentations. It does closed captioning which is awesome.
MEG:	Oh, that’s a great example.
ELAINE:	If that technology is there, could it be used in other venues as well? That would just be…Oh, that would be tremendous.
MEG:	So, big shout out to the Mayborn.
ELAINE:	Yes, definitely.
MEG:	Have you visited other places, other cities, where you have been able to enjoy public events?
ELAINE:	I have not.
MEG:	Okay, so I remember one time, oh gosh, maybe 7 years 6 years ago or so you and I were having coffee or lunch and you were telling me how excited you were about these brand new hearing aids you had.
ELAINE:	Yeah.
MEG:	Yeah and you were telling me about what led to you getting them because it was really expensive and so tell me about that journey.
ELAINE:	I had forgotten about that.
MEG:	Yeah.
ELAINE:	Okay so let’s see, it was right after we had retired and the last pair of hearing aids that I had before retirement had come to the end of their life and I thought well what am I going to do? I tried to live without them for a while (laughs) and that was extremely difficult.  That’s when I got so depressed and so…
MEG:	Tell me more about that, I mean-
ELAINE:	-about the depression?
MEG:	Yeah, if you’re willing to?
ELAINE:	Oh, sure.
MEG	Like, what did that look like for you?
ELAINE:	Because I felt isolated and just could not hear and didn’t know how I was going to navigate that. It made me feel really old, for one thing, you know.
MEG:	And how old are you at that…Well, you don’t have to say.
ELAINE:	Well, I was in my mid-sixties.
MEG:	You were not really old-
ELAINE:	-I was just a kid.
MEG:	Right. You were just a kid. Yeah.
ELAINE:	And not sure what to do and so my husband and I researched some things and I bought a little hearing insurance policy that I’m not sure it was that great but anyway, so I bought some hearing aids and paid them out and that was when we had that conversation. I had just gotten them and they worked really well for about 4 years and brought me back to life. I could participate in things again. I could hear pretty well but then whenever they begin to lose their efficiency, I was going back to that ‘here we go again, what am I going to do?’ Because by then, it was going to be more difficult to buy them.
MEG:	Right.
ELAINE:	That’s when my friend asked if I would mind if he gave me a pair of hearing aids.
MEG:	Right.
ELAINE:	Isn’t that a great story?
MEG:	That just is such an example of generosity.
ELAINE:	It is.
MEG:	And how did your family respond to that? Did they notice, especially Louis, did they notice how much you were struggling and the change and what did they say to you about that?
ELAINE:	He noticed the change but I don’t think he knew what precipitated it because I didn’t talk about it. He just knew that I was not happy.
MEG:	Yeah. Yeah.
ELAINE:	I think I didn’t know how to talk about it. It took me a while to realize ‘well I’m missing out on hearing and I’m not participating’. This is really important to me to interact with people and I’m not able to do that.
MEG:	So, it took you a while to figure out-
ELAINE:	-it did.
MEG:	You just knew that you were feeling more and more blue and took you a while to put it together.
ELAINE:	Yes, it did.
MEG:	And you didn’t feel like you could do anything about it.
ELAINE:	No, I really didn’t. Like I said, that’s a huge expenditure for us.
MEG:	Right, right, right.
ELAINE:	And thought I was just going to have to…once I realized ‘Oh I’m depressed. I am not hearing.  I feel left out of everything.’
MEG:	Right.
ELAINE:	And it was, like, ‘okay well, shall I learn how to read lips? (laughs)
MEG:	Yeah, yeah.
ELAINE:	I just…I didn’t know what to do.
MEG:	So now going forward, you…you’re kind of resigned to the fact that you know that your hearing is going to decline further-
ELAINE:	Yes.
MEG:	and possibly beyond what hearing aids can do.
ELAINE:	Right.
MEG:	(deep breath) Do you feel more ready for that than you did then?
ELAINE:	I think that, yes, mentally I do but, you know, my audiologist said this could be a slow progression so that’s my prayer. That my hearing will last as long as I’m alive. And you know, who knows what the future holds.They may be something out there that’s just going to be perfect and affordable and-
MEG:	Right.
ELAINE:	I keep hoping. (laughs)
MEG:	Right, right. I bet you do. Do you know if there’s any kind of particular program that, like, formalizes what your friend did? Like, where people could donate their hearing aids?
ELAINE:	Oh, I don’t know.
MEG:	Gosh, that would be worth finding out.
ELAINE:	Yes, it would be.
MEG:	Yeah, yeah.
ELAINE:	Because even though these were maybe two years old, so, you know, if they last 7 years, I’m going to have 5 years of hearing.
MEG:	What an amazing gift.
ELAINE:	It is. It is amazing.
MEG:	Right. Right. So you can get…you, you mentioned amplifying hearing aids.
ELAINE:	Yes.
MEG:	For a lot less?
ELAINE:	You can but that doesn’t really help my hearing.
MEG:	Okay.
ELAINE:	Because it’s the clarity that I need.
MEG:	Okay. So, just like you said that, sometimes your family thinks they just need to speak louder and that doesn’t really help.
ELAINE:	Nope.
MEG:	In the same way, if you just have, like, a microphone inside your ear…
ELAINE:	(laughs) That’s right.
MEG:	That really doesn’t do the trick.
ELAINE:	Not at all.
MEG:	So to get really good Improvement in your … that would be almost like putting on readers and expecting that to solve everything.
ELAINE:	Oh, that’s a good example-
MEG:	-for glasses, right? Get your grocery store readers.
ELAINE:	Yes.
MEG:	And so, the more expensive hearing aids…are you able to describe what they do differently?
ELAINE:	Well, for one thing, I can talk to…use my telephone through my hearing aids.
MEG:	Okay.
ELAINE:	And without that, it’s really difficult for me sometimes to hear what someone is trying to tell me over the phone. And then, some of them have noise reduction. This particular pair does not but it would take care of the ringing in a person’s ears. That would reduce that. And then, you know, you can get all kinds of bells and whistles. One thing I learned is to be careful with the end canal hearing aids because unless they have little…I call them little hairs, they will pick up every noise in your mouth so when you eat, it’s like don’t talk to me, I’m eating.
MEG:	Yeah. Well, my husband just got hearing aids for the first time.
ELAINE:	Okay!
MEG:	and he really researched it because he’s a musician
ELAINE:	Yes.
MEG:	and he needed to make sure he could still enjoy music
ELAINE:	so he’s found some that he can-
MEG:	Yes.
ELAINE:	Oh what a blessing that would be.
MEG:	But he was able to get it because he has employer insurance.
ELAINE:	Okay…
MEG:	He wanted to get that before he was just on Medicare.  Because he knew he’d have to come out of pocket for the whole amount.
ELAINE:	Yeah.
MEG:	Yeah.
ELAINE:	I’m so glad to hear that because I miss music so much.
MEG:	I know you do. I know you  do. Especially being married to a musician.
ELAINE:	Oh, I know.
MEG:	And you used to sing in the choir?
ELAINE:	Yes.
MEG:	Yeah. Oh, that’s a loss.
ELAINE:	um-hmmm.
MEG:	How was it for you kind of emotionally when you found that you were missing out on conversation?
ELAINE:	It’s really isolating and leads to depression. I just feel myself becoming more and more internally focused and part of it’s because you’re embarrassed. You can’t hear. Sometimes, you interrupt people unintentionally because you don’t…you can’t hear the nuance of their voice and don’t realize that maybe they are just pausing rather than ending what they had to say. So, that can be a problem. And missing important things that people are trying to tell you is just… It’s really easy without the help of hearing aids to just become so introverted because you don’t want to…you don’t want to become a caricature. You know, that silly little old lady who can’t hear and it can be very depressing.
MEG:	And you, like…I can’t imagine you being introverted. (laughs)
ELAINE:	(laughs) Me either.
MEG:	Right. I mean, you’re not just a gregarious person. You know, they talk about introversion versus extroversion being where you get your energy from
ELAINE:	oh, I just love people
MEG:	Yeah.
ELAINE:	I love being with them.
MEG:	Yeah.
ELAINE:	And so far, I don’t mind saying ‘Ok, would you repeat that?’ but then again, I have to make sure I’m in a situation where it’s okay to do that.
MEG:	Yeah.
ELAINE:	You don’t want to cause other people to lose their train of thought or become uncomfortable because there’s that woman asking me questions again.
MEG:	Right. So, you put a lot of the energy that you put into this is considering other people as you’re needing them to consider what you need.
ELAINE:	Yes.
MEG:	You’re also putting a lot of energy into thinking about what they need.
ELAINE:	That’s right. Well, that’s good communication. (laughs)
MEG:	Right. Right, exactly.  If you’ve just joined us, I’m Meg Wallace and this is Living It with Mobilize Waco. Today, I’m talking with Elaine White.  So, you talked about your pastor and the fact that she prints the sermons for you. Are there other things that people do in church and in other places that help make it easier for you?
ELAINE:	Well, since I’m learning to read lips, it’s really important that people look in my direction when they speak. That’s not always possible. You know, if someone’s in the Sunday School classroom, they need to make eye contact with everyone which means sometimes they have to turn away from me.
MEG:	Right.
ELAINE:	But looking directly at me, not necessarily speaking louder, just looking at me when they speak, is a tremendous help.
MEG:	So, I’m imagining we used to be in a book group together and we’re sitting in a large group of people, are you able to follow that conversation?
ELAINE:	It depends on the acoustics of the room.
MEG:	That makes that big of a difference?
ELAINE:	It really does.
MEG:	Wow, okay.
ELAINE:	Yes, in a home where you’ve got soft services that absorb a lot of the external noise, it’s easier for me to hear people. In Sunday School, we have a lot of hard surfaces so the voices echo off of the chairs and the floor and the walls and it makes…it’s more difficult to hear in that setting.
MEG:	Isn’t that interesting. So, I would imagine the number of people in the room and their conversation style…
ELAINE:	Yes, yes, definitely. People…the way we speak, we drop the ends of our phrases frequently and that’s a normal speech pattern. But once someone begins to drop, I lose the hearing and so that’s again I miss out on a lot of the ends of things.  And sometimes, that’s the important part of what they’re saying.
MEG:	Right, that’s true. We tend to…some, some of us get louder when we’re saying something we feel is important, some people get quieter.
ELAINE:	That’s right,
MEG:	Oh wow. And so, thinking about so many social settings like restaurants, if you have the option to sit outside, does that work better than sitting inside?
ELAINE:	It depends on if there’s a lot of traffic around restaurant
MEG:	Oh, that’s true, that’s true.
ELAINE:	I usually try to sit with a hard surface behind me. So that whoever is speaking to me, it kind of bounces the sound toward me a little.
MEG:	So in that case a hard surface helps you
ELAINE:	It does.
MEG:	What’s your favorite restaurant you can go to, where you can hear the conversation?
ELAINE:	Well, we have found a little corner in the Cracker Barrel off of Sun Boulevard? Sunset?
MEG:	Sun Valley?
ELAINE:	Yes, Sun Valley. And that’s a really good place. Cafe…here’s an advertisement. Cafe Cappuccino has booths so we can sit in that and I meet a lot of my friends there because we can hear each other and some of them are also hearing impaired so, you know, we, like, navigate that together.
MEG:	So you make…you make where to go out to eat decisions on the basis of where you can hear and it’s interesting, ‘cause you said the hard surfaces can make things too loud.
ELAINE:	They can but in a restaurant-
MEG:	But having one-
ELAINE:	Yeah, It encloses the sound a little bit. It blocks out all of the restaurant noise.
MEG:	If you have a wall behind you?
ELAINE:	Yes.
MEG:	Okay. That’s interesting. What about when you’re having a conversation with a group of people, what helps you to be able to be a full participant? What can people do? or…
ELAINE:	To speak…to enunciate. People don’t do that. So many people just kind of slur their words together and, you know, I miss all the consonants and so it’s just like (phonetic of unintelligible sound). (laughs)
MEG:	Yeah.
ELAINE:	It could become that bad and then just being aware that I need to hear them.  My friends are learning so I have two or three who intentionally turned toward me when they speak and that is such a gift so that I can see it and hear what they’re saying.
MEG:	Right. It’s interesting because you…you’ve talked about what an individual can do and the way that we speak and what makes it easier for you to catch everything but there’s also the way the conversation kind of criss-crosses and, like, you were talking about not catching a joke.
ELAINE:	Yes.
MEG:	And everybody’s laughing and you don’t know why.
ELAINE:	Yes.
MEG:	Yeah. Have you ever had a group of friends who kind of modified the rhythm of their conversation in a way that was helpful for you?
ELAINE:	Oh, yes.
MEG:	What did they do?
ELAINE:	Well, they don’t mind repeating and, you know, that attitude is really important. You can tell when someone’s irritated when you ask them to repeat something and my friends are very gracious. They don’t mind doing that at all and they’re learning to turn toward me when they speak.
MEG:	Yeah.
ELAINE:	And we meet in quiet settings or in their homes. I do socialize like at church.  We have the large setting but people will sit close to me and talk maybe a little bit louder so they rise above the noise of everything that’s going on around us.
MEG:	and maybe create a little subgroup of (unintelligible).
ELAINE:	Oh, that’s a good way to describe it. Yes, a little subgroup within the larger group.
MEG:	Right, right.  My husband and I…I told you that he’s just gotten his first pair of hearing aids and sometimes I want to make sure that he heard me because I don’t want him to miss out but, on the other hand, sometimes I do that too much. Did you catch that? Did you catch that? Did you catch that? Right? So, how do you navigate that or how does Louis navigate that?
ELAINE:	well he has…we had an interesting conversation about this. We had, not a little fuss, but I just got a little tiffed and finally he said, “I don’t think you always hear what I’m actually saying” and I said, “Well then, you need to let me know that” so, you know, he’s so gentle and so kind and he doesn’t want to interrupt but he’s learning that if he wants to make sure that I really heard what he said, it’s okay to say, “Did you get that?”
MEG:	Right, right.
ELAINE:	Did you understand what I said? Are you sure you heard me?
MEG:	And so far, that’s working out good?
ELAINE:	It’s working out really well.
MEG:	So there’s a lot of negotiation that has to happen.
ELAINE:	Yes, yes. And I can imagine someone who doesn’t have empathetic friends would feel so lonely because you’re imposing on people, really.  To ask them to do things this way so that you can participate and I’m fortunate that I have so many people in my life who love me and are willing to do that.
MEG:	Well, when they do that for you, they have the gift of your presence and full involvement and so that seems like an easy trade-off?
ELAINE:	Oh, thank you, Meg. That’s really sweet. I love looking at it that way. I’m going to remember that.
MEG:	There you go. (laughs) You know, there’s…there’s a…there’s a scripture about our plenty supplied their want and then the future, our plenty will supply their want and then there will be equality, right? and I think it’s that way.
ELAINE:	I think so.
MEG:	You know, we all have gifts to bring but we have to keep that exchange going. What do you think we could do? Let’s, like, just think a little ambitiously here. I was reading a book recently where it talked about the…and I’m going to use a word here that’s kind of a slur, that’s a reclaimed slur so the word is crip. So if I, as a person without a disability, call somebody a crip, I can’t do that but somebody, who…the disability community, some in the disability community have reclaimed the term “crip” and they talk about the “crip tax”. And the crip tax is what you have to pay because you’re disabled and one example would be hearing aids.
ELAINE:	Yes.
MEG:	Right? and in this book, they…the author was suggesting that maybe especially in…in church communities, we share the crip tax.
ELAINE:	Oh, my. That would be revolutionary.
MEG:	Yeah, wouldn’t that be revolutionary?
ELAINE:	Yes, it would.
MEG:	Because, you know, people have gifts to bring to us and we can share our gifts with them and let’s keep it going. Right?
ELAINE:	You know, even sharing hearing aids that are still usable?
MEG:	That’s right, she absolutely did.
ELAINE:	My audiologist said let’s make these last as long as possible so she’s participating in that as well.
MEG:	Yeah, that’s great and you also talked about that…that you get really tired at the end of the day.
ELAINE:	Yes.
MEG:	Yeah, and that’s part of the tax that you pay.  It’s taxing.
ELAINE:	It is. It is taxing.
MEG:	To use the word taxing.
ELAINE:	It is very taxing.
MEG:	Yeah.
ELAINE:	So, I schedule meetings early and my friends know that probably by 8 or 9:00 we’re going to be leaving.
MEG:	Right.
ELAINE:	Elaine has done all she can do.
MEG:	That’s right and so people have to recognize that…that you need some time to rest your ears and rest your mind from all of that really hard work. Well, just to…to finish this up. What words of wisdom do you have for other adults who are having a significant change in their hearing? It happens to a lot of us.
ELAINE:	It does. It happens more frequently than I originally understood.
MEG:	Yeah.
ELAINE:	Oh, I think the biggest thing that has helped me is asking for help, asking people to speak a little bit slower, asking them to look at me when they speak, and…and not…and realizing that I’m going to have to remind them because they want to help, most of the time, and giving your time self to rest. I just…I could not…there are times when I just have to stop and take out my hearing aids and let everything be quiet and then begin again. So, understanding what our limitations are, I think is really important and trying to design our life in a way that works for us as best we can. (music fades in)
MEG:	Those are great words of wisdom. Thank you so much for coming, Elaine.
ELAINE:	I’ve enjoyed it. Thanks, Meg.
MEG:	Thank you for living it with Mobilize Waco. I’m Meg Wallace. For resources on today’s topic, visit mobilize waco.org. Living It is a production of KWBU. You can hear this program every third Friday of the month and at kwbu.org. (music fades)