Pardon, I didn't hear you

Millions of people live with hearing loss. It is so common, yet there is still such a stigma. Shari and Gael are hearing loss experts who want to share their stories to help us understand what it is like to have hearing loss today.

www.LivingWithHearingLoss.com
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Transcript

[00:04] Debra Jones: Welcome to OWN THE GREY, a podcast to dispel the notion that aging is undesirable and setting new positive attitudes. I'm Debra Jones, and I believe you can be vibrant and healthy throughout the best years of your life. When Shari Eberts and Gael Hannan met, they realized that they shared a passion for changing the world. Gael is a past director of the National Board of the Canadian Hard of Hearing Association, and she developed a hearing awareness program for elementary school students across Canada. Shari serves on the Board of Directors of the Hearing Loss Association of America and has produced an award-winning documentary called We Hear You Now Hear Us, a groundbreaking film to build awareness, community and a more inclusive world around hearing loss. Welcome to OWN THE GREY Shari and Gael.

[01:12] Gael Hannan: Hi. Great to be here.

[01:14] Shari Eberts: Great to be here. Thank you.

[01:15] Debra Jones: You're welcome. It's good to talk about this topic because it really seems like this is a topic that people don't want to talk about, do they?

[01:26] Shari Eberts: Not all the time. Hearing loss is unfortunately something that people feel like they need to hide. It's very stigmatized. So it's good to have this opportunity to talk about it with you.

[01:38] Debra Jones: Yeah, and it's great to have two people that have hearing loss in their own personal experience. So you have hearing loss, Shari, don't you?

[01:46] Shari Eberts: I do. I think it's actually a genetic hearing loss, but it didn't start until my mid 20s, or I didn't notice it anyway until my mid twentys. Yeah.

[01:56] Debra Jones: And Gael, you have hearing loss, too?

[01:59] Gael Hannan: I do. I've had it for a long time, actually my entire life, because I was born with it cause unknown, which is very often the case with not genetic, but it happened at birth, or it happened during pregnancy. Mild as a child, and now very profound hearing loss. So I have a lifetime of experience with it.

[02:20] Debra Jones: Wow. And so you both co-authored a book. Why did you write the book?

[02:26] Shari Eberts: That's a great question. Well, both Gael and I are tremendously passionate about advocating for people with hearing loss and about hearing loss issues. We had both sort of been advocating individually and during the pandemic, Gael had reached out to me and said, hey, do you want to partner on a project together? And neither of us had really partnered with anyone in terms of our writing. Our writing was always very personal, very individual. But we felt that putting our heads together, we could really do a much better job of laying out sort of a formula, a handbook, a way to live skillfully with hearing loss. And when we compared notes, there were just so many overlaps in terms of the things that we had pieced together in order to live skillfully with hearing loss. So that was sort of our goal, was to really put that forward and put two heads are better than one.

[03:25] Gael Hannan: Sometimes our journeys are very individual, yet they're the same. When I say our, I don't mean just Shari and me, but everyone. And I had written a first book called The Way I Hear It, and it was a survival guide, but a lot more memoir based and like so many books are. And I wanted to get back to strategies. I wanted to get back to the things that we need to do. We kind of moved away from that, and I didn't want to do it alone. Shari and I knew each other. I admired her work. She has a focus. She's a bit more, much more technically focused than I am. She's much more organized than I am. And we both brought things to the table. And this was actually May of 2020. The pandemic was just setting in, and we did the entire thing over Zoom and Google Docs, and we only saw each other again for the first time after three or four years this past spring. And it's been a labour of love that we're very proud of.

[04:26] Debra Jones: It's very exciting.

[04:28] Gael Hannan: I know.

[04:28] Debra Jones: I'm an author too. That book getting out there is like the birth of a Baby, isn't it?

[04:33] Shari Eberts: Absolutely.

[04:34] Debra Jones: Sometimes just is painful. From what I'm hearing then, your message is to help people live with hearing loss. So there are a couple of directions that I want to go, and it's to talk a little bit about when we discover that we can't hear as well. There's such an emotion attached to that. Can you talk about that part of the journey? Like, the very beginning?

[05:08] Gael Hannan: Even though I grew up with my hearing loss, I think that for people who acquire their hearing loss later in life as an adult, the immediate reaction is pain, grief, and disbelief. I mean, how can this be happening to me for two things? As Shari said, so stigmatized, it was always historically tied with lesser ability, lesser cognitive, less smart, and that it's still a lingering stigma today. And the other thing is, communication is the glue that connects people hearing loss impacts that glue, and it brings a separation between us and the people we love every day. And that is hard to deal with. We don't know how. And that's the thing. We don't know what to do.

[05:58] Shari Eberts: Yeah. And I would say that everybody reacts to hearing loss in an individual way, but what we found in our research is that there's actually a pretty typical journey that people go through in terms of stages of their hearing loss journey, not necessarily the stages of the physical thing that's happening, but of their emotional activities. And the first stage is we call it debating with yourself because you're probably having trouble hearing, but maybe you're in a little bit of denial and you're looking for other things to blame anyone or anything else other than your poor hearing. And that's something that can last for, they say, seven to ten years. I was very, very stigmatized by my hearing loss. I had watched my father struggle with his own hearing loss, and I saw him isolating himself. I saw him, you know, being secretive about it, laughing at jokes that he hadn't heard. And so when I discovered my own hearing loss, I did the same thing. I followed in his footsteps and lived in sort of this period of denial and stigma for many, many years. So that first stage of the hearing loss journey sometimes, you know, can last quite a quite a long time, and then the second stage is validating. So it's when you finally decide to go get that hearing test, and it may not be what you want, but now it is official that you have hearing loss. And it's actually a very important step. And I would encourage any of your listeners who might be thinking that they might have hearing loss or maybe someone in their family to really take that important step because the knowledge and the facts are so important in being able to make good decisions about your health and the way that you want to live your life.

[07:54] Debra Jones: That's great advice. Yeah. I have a question then. So does it get worse if you ignore it?

[07:60] Shari Eberts: Well, I don't know if your hearing loss necessarily gets worse. Right. It's not that your hearing loss is impacted by that, but there are studies that show that your cognitive abilities are impacted. Hearing loss is very much associated with isolation, depression, and unfortunately, a higher incidence of cognitive decline. Even with low degrees of hearing loss, if you have a mild hearing loss, you still have twice as much likelihood of developing cognitive decline. And this is a study that was out of John Hopkins led by Dr. Franklin. It's a very interesting and scary study for those of us with hearing loss. But the good news is that if you don't ignore it and you take steps to do something about it and to continue to be engaged with life and individuals and communicate, there is evidence that you can reduce that risk.

[09:01] Gael Hannan: I think in addition to that, as Shari said, and it's all fascinating stuff, if you ignore it and you try and bluff your way through situations, bad habits become ingrained. It impacts your relationships. It impacts how you function on the job because you're always trying to second guess what was going on, and people might assume things about you that have nothing to do with your hearing loss. So there's so many physiological reasons to address your hearing loss as well as relationship wise and emotion. There's just so many reasons that say, hey, it's hearing loss, and there's things you can do to address it and make life better.

[09:44] Debra Jones: So the title of your book alludes to the fact that there's a skill involved in working with your hearing loss. What do you mean by the skill?

[09:56] Shari Eberts: Well, there are multiple skills, really, in terms of living well here. I wish there was one skill, but what we have done is put it together as sort of this three legged stool of skills, because three legged stools never wobble, even when the ground is bumpy, which I still have not figured out why that is the case.

[10:19] Gael Hannan: But it's math, Shari, apparently.

[10:23] Shari Eberts: Physics. Okay, it's math. It's physics. I do find that very interesting. But still. And so we have these three legs of the stool and there are different types of skills. One is something we call mind shifts, which is all about attitude change. And we talked about how a lot of times there are negative emotions that come with hearing loss. And so this is your opportunity to turn those around. We're not saying like, oh, you're going to snap your fingers and say, yay, I have hearing loss. That's not how it works. But there are ways to put it into perspective and to shift things around so that you are now thinking proactively about how you can do things better rather than feeling like, why me? Or really wallowing in some of those negative emotions.

[11:12] Debra Jones: So it's really like an empowerment piece, isn't it?

[11:16] Gael Hannan: It is very much an empowerment piece, and it can be done. And how well you do at it is part of your personality and how many negative attitudes you're dealing with and that sort of thing. I just want to throw my skills. A skill means that, first of all, you have to learn about it. If you don't have a skill, maybe you don't even know about it. And it's something you can get better at. And that's what we talk about in the book. All of these skills, including the next two legs that we haven't got to yet, once you know about them and learn about them and you practice them and become aware, you can get better. And that's where the word skill comes in. It's not a technical, clinical flipping on a switch. It's part of a process. And it's the hearing loss journey that I know it's kind of trendy to talk about journeys, but that's what it is. It's a journey. It's not like a puzzle you figure out and then you solve it. It's a journey. It's ongoing because most of us, when we have hearing loss, most people will have it forever. The second leg is technical, and it's not just hearing aid. As Shari said it's today, oh my gosh. There's never really been a better time to have hearing loss than now. The array of technical devices, like right now, talking to you, I have all sorts of devices that are streaming into my cochlear implant and my hearing aid, and it's just amazing. It brings us closer together. And there's just a huge array of devices, which is the second technology is the second tool, and the third leg.

[12:57] Shari Eberts: Is non technical skills. So we call them communication game changers. And these really are behavioural shifts that you can do. Things like identifying as someone with hearing loss. So if you let people know and ask them to speak louder or to move their hands away from their mouth so you can do a little bit better lip reading, you have a much better chance of actually communicating well. So things like that, things like speech reading or lip reading, using visual cues and other information to help piece together maybe some of those things that you might be missing from an auditory perspective. And the way the stool really works is that each piece is incredibly important and each piece on its own is critical. But when you put the three together, it's really when the magic happens because you have the proper attitude, which leaves you to be more open to experimenting with technology, being more open about identifying as someone with hearing loss, advocating for your needs. And so it's really sort of that combination that comes together to have the biggest impact.

[14:12] Debra Jones: That's cool. So that three legged stool is the mindset shift, the technical side of things and the communication changes that we need to do. So I had also learned from listening to one of your podcasts that in August of 2022, the FDA have made over the counter hearing AIDS available. So that's the technical side. But I would think that that's pretty much a game changer too. What do you have to say about over the counter hearing AIDS?

[14:49] Shari Eberts: Well, I think this is a very exciting moment. Gael said, I think it's the best time to have hearing loss. If you're going to have hearing loss, this is the time. I think over the counter hearing AIDS are very exciting now. They're not for everybody, right? They are just for people who have mild to moderate hearing loss. And so what does that mean? That you have difficulty communicating, but that a little bit of amplification is going to give you some assistance and that's why these devices will work in those cases. They're simple devices, right? They're not going to be as technical or as well programmed as some of the devices that are needed if you have a more severe hearing loss. But I think it's an opportunity. We were talking about that first stage of the journey, the debating with yourself and how that can take seven to ten years. And I feel like this is an opportunity to really narrow that window for people because it's a much easier way to get help with your hearing situationally. So maybe you don't have problems hearing in every situation, but maybe you do in a loud restaurant or maybe you do at a lecture where the speaker is very far away. And this is an opportunity to sort of take those steps into taking charge of your hearing loss and doing things to communicate better that I hope will set people on the road to continue to do that should their hearing loss get worse over time.

[16:20] Gael Hannan: It's going to be fascinating to see right now this is just an American thing and not yet available in Canada anyway. But although a certain number of devices are available on the internet, but so many of them are, if it's cheap, you're going to get what you pay for. So that's why people around the world will be closely watching how the rolled out of the over the counter system. So fingers crossed.

[16:48] Shari Eberts: It's been exciting to see the companies that are going into things like this. There are a number of consumer electronic companies, even Apple, the Apple AirPods Pro, that everybody's walking around with them. There are ways to use those as simple hearing AIDS now by connecting and using the microphone on your iPhone. So it's going to be really fascinating, I think, to see just this innovation and new companies coming at this issue of hearing loss. And so that will, I think, hopefully create new and exciting products for everyone along the whole spectrum as this rolls out over time. And of course, hearing aids are very, very expensive as well. And so over the counter devices will be a more cost effective option for entering the market as well.

[17:41] Gael Hannan: And most importantly, they're going to help remove stigma. And just by people walking around with AirPods in their ear and everything, and people walking along the street seemingly talking to themselves. It was hard for me to get used to that a few years ago. But all of this is going to normalize hearing loss and this is a common human experience and let's stop stigmatizing it. And if we have it, let's embrace it, not maybe with joy, but at least let's do something about it.

[18:14] Debra Jones: Maybe with joy, maybe actually there is some joy. I remember hearing a story about I'm not sure which one of you was in the bar. And you have your own personal story. I think that was you, Gael, was it?

[18:27] Gael Hannan: We have so many stories, but this was when this was a big AHA moment for me in my life. And I was 40 years old. I was looking for help. I was pregnant. I didn't know anyone else with hearing loss. I didn't want to harm my baby because I couldn't hear them. So I went to a hearing loss conference with other people with hearing loss for the first time in my life. And I walked in that conference one person and I walked out another. I learned that I wasn't alone. I just learned all these great things, including how not to kill my baby. So on the final night, two of my new friends and I, we went out for a drink in Hamilton, Ontario, and we walked into a bar. And there was no one else in the bar except this table of four people in the corner, presumably what we call hearing people they could hear. So there was seven or eight of us that sat down and I tell you, Debra, there is nothing louder in this world than a bunch of hard of hearing folks who've been drinking wine. We were loud, and I was uncomfortable and embarrassed. I kept looking over at this table of four people in the corner. They kept shooting looks at us. You know, we were all clearly very loud. And I was a bit embarrassed. And then and then I went, So what? So what if we're loud? That's the way we are. It's okay. And that was such a life changing moment for me. The stigma just kind of fell off my back that I honestly didn't even know that I was caring. So it was a huge step forward for me.

[20:09] Debra Jones: I love that story. I love that story. I could actually just picture that as well. And that AHA moment, that's just it. We worry a lot about what other people think of us. And there's an example right there. And when you finally I guess there was like an acceptance of it is what it is.

[20:28] Gael Hannan: Right.

[20:29] Shari Eberts: Yeah, absolutely. I think you have to sort of come to that realization that everybody has something and this maybe is part of yours. And so to just accept it and view it as just an opportunity to learn new ways of communicating, which I think is wonderful. I think the other important point about Gael's story, though, is finding peers, other people who can share in the experience. And for me, that was a huge life changing moment as well, because it helped me overcome my stigma. I saw that there were other people who were like me. I had started my hearing loss in my mid twenty s. I didn't know anyone with hearing loss except for my father, who was also so stigmatized he didn't really want to talk about it. And once I finally was able to meet other people and see that there were successful professionals in all walks of life, at all different ages who were advocating for themselves, advocating for people with hearing loss in general and creating change in the world, positive change in the world, to make things more accessible, not only for us, but for everyone. And so me sort of seeing that and then connecting with these other advocates and other people with hearing loss just made me feel so much less alone in the struggle. And so that was a huge turning point as well, because you get that strength from other people and it helps you to move forward more confidently.

[22:01] Debra Jones: Right. So where would you suggest people go to find your peers? Because everybody seems to be either hiding their hearing loss or you don't necessarily know that somebody has hearing loss. How do you find your peers?

[22:15] Gael Hannan: Well, the simplest, and it really depends on how much you use social media. And this is just the first of several things Shari and I are going to talk about. But many people turn to things like Facebook, and there are many hearing loss groups on Facebook. Many different types of hearing loss. You can find single sided deafness. There's a fabulous new one called The Emotional Side of Hearing Loss, which is one of the better ones, and there are many different types. And you can go in with a question and people will answer. The caution that I make on that one is that people are coming in with their own experience and often a biased experience, often very judgmental. And so you really have to weed through all of it. But that is one easy way to reach out. And it does give them a feeling of peace that you know, that there's other people out there. And then there's the hearing off groups. Shari. You can talk about them.

[23:18] Shari Eberts: Yeah. So in the United States and really around the world, there are hearing loss associations. In the US. Is the Hearing Loss Association of America, and they have chapters that are located in different local markets around the country. And so if you want to be brave and go to a meeting in person, you can do that and meet people face to face. But many of them, because of the Pandemic, moved their chapter meetings onto Zoom. So it is actually an opportunity to sort of stick your toe in the water. If you don't feel like you want to sort of just show up in this room full of all these new hearing loss folks that you don't know, you can sort of stalk them a little bit on Zoom and join some of the meetings. And there really are tremendous ones. The New York City chapter, which I'm a member of, the HLA. They've been drawing people from around the world to some of their chapter meetings recently. There usually are speakers about. Sometimes it's audiologists. Sometimes it's ENTs. Doctors that work with the hearing system. Sometimes it's us sometimes advocates who are talking about the skills that you need to live successfully with hearing loss.

[24:39] Gael Hannan: And in Canada, it's the Canadian Hard of Hearing Association. And it doesn't have as many branches as HLA does, but it is reachable online. There's different services that different organizations offer. There's a peer mentoring program if you need to talk to someone. You don't want to be Shari there with a whole bunch of people. You can have someone work with you one on one. But Shari, when she talked about be brave and show up at the conferences that Shari and I go to, and you can always tell who is there for the first time. And that's the person who's walking around looking gobsmacked with tears in their eyes because their life has just been changed. They are just like I described at my conference. And it happens at every conference. I get teary thinking about it. There just are different ways to connect with other people with hearing loss, and we really encourage people to do it.

[25:42] Shari Eberts: And also through things like podcasts, right. Learning about this through yours, Debra, and also through books and through documentaries. So that was one of the reasons that we made We Hear You, because we felt like people didn't necessarily understand what living with Hearing loss is all about. A lot of the mainstream media presentations about hearing issues are focused mostly on the deaf community. So using sign language to communicate, and that's much easier to see, right, because it's visible. People are actually communicating in a different way. The vast, vast majority of people with hearing loss do not use sign language. They are not part of the deaf community. So we really try to make this documentary, We Hear You, which would show that other side of the experience and hopefully create some community, but also to raise awareness just with Gael was talking about the hearing. People should raise awareness with just the mainstream audience about what it is like to have hearing loss.

[26:52] Debra Jones: Yeah, and I think that's a really good point, because that's why we're talking about it today. And it isn't necessarily ourselves that have hearing loss. We may learn something from listening to the podcast, for instance, that can help our loved ones as well. So it isn't something that the person that has hearing loss has to do all of the work. We're living in a society together. And I think what I'm hearing from both of you is you're normalizing a normal situation that has been stigmatized as being abnormal in some respects. And I think that normalizing aspect, it's not unlike the whole purpose of my podcast OWN THE GREY, normalizing getting older. I mean, we're all getting older. There's no sugar-coating any of that, right? And it is something that if we accept it for what it is, and then we're empowered to just stand and be in that. So if we have hearing loss, we have hearing loss. It isn't a problem. It's just something that we need some skills to be able to be in the right space with so that we can help ourselves and help others, too.

[28:11] Gael Hannan: I love that. I love what you're saying. We also, though, shouldn't underestimate the impact that it has on relationships. My husband, who I refer to as the hearing husband in all my writings, people love to meet the hearing husband, I think, still sorry for him. But even after over 30 years together, every day there's something that comes up with hearing loss because it changes how you interact with people. We have needs. We need you to face us. We need to get our attention. Communication between hearing people, it's very organic. Someone says something, someone else responds. It's very hearing. People do it without thinking. It's what they do. They hear. They can't help it. It's organic for us. We work at it. We need to. And it's not just hearing. It's understanding. So I'm lucky, and Shari we've met each other's husbands. They wouldn't call them long suffering, but they they've had to adapt. And in our book, we talk about some very tense moments in our relationship in which we've had to sit down with our families. And this conversation can happen over and over, through the years. This is a skill. It takes time and effort. And the other people, the people in our lives, our children, our spouses, it impacts them. It becomes their hearing loss as well. And they have to learn and they have to apply skills as well. So hearing lock has its biggest impact on relationships, and we focused a lot on that in our book.

[29:49] Debra Jones: And so, Shari, with your book, what are you hoping the reader is going to get out of it?

[29:56] Shari Eberts: Oh, I love that question. I love that. I hope a couple of things. I hope the reader is going to feel connected to other people with hearing loss and just feel a little bit less alone in their struggles. I hope that they read it and see themselves on the page and just say, you know, I'm going through this process, this journey, and I'm not the only one that's going through it. And so I know that things can be better because of reading this book and following some of these skills. I also hope that people will share this book with their friends and family, because like Gael said, it's really a two way street. Communication, right? That's what life is all about to some extent, is communicating in that connection. And because there are things that both sides of the equation the person with hearing loss and the communication partner need to bring to the table. I hope they're going to use the book as a way to maybe broach the subject of hearing loss with an important person in their life or their family members or their friends and say, this is an insight into what I'm going through and how we can work on this together. So we hope it really brings people together in a lot of ways.

[31:11] Gael Hannan: Beautiful.

[31:11] Debra Jones: And Gael, what are you hoping for the book?

[31:14] Gael Hannan: Oh, my gosh, I'm hoping that Shari Ebert stays my friend forever. That was a brilliant, brilliant … I really can't add more than that because that really sums it all up. And it's so beautifully said, Shari, so ditto everything she said, and I think that someone stands up empowered. And we've heard back from a few people and said, I read your book, and I stood up for my needs. I expressed myself. And whenever we hear that, that's why we write the book, you don't normally get rich writing a book. We discovered that, and that's fine and truly I'm just teasing. We wrote this book because it was a way for us to get our philosophies and to share our personal experience. So everything she said, plus my little storage, looks beautiful.

[32:08] Debra Jones: Well, I'm really glad that you are both working towards bringing better hearing.

to a world in need. Thank you for the work you're doing and thanks for joining us today.

[32:18] Gael Hannan: Thank you, Debra. It was a joy to be here.

[32:20] Shari Eberts: Thank you so much. And thank you for your good work. To empower people to age well and age with skills and gracefully, it's all part of the same process.

[32:32] Debra Jones: You can now find my podcast, my book, and soon my classes on BabyBoomer.org. The ultimate most trusted source for news, information and community. They've curated all the resources on the things that interest you. Check it out today at www.Babyboomer.org.