Hearing Loss LIVE! Podcast

Hearing Loss LIVE! Talks You Don't Know

September 20, 2021 Hearing Loss LIVE! Season 1 Episode 4
Hearing Loss LIVE! Podcast
Hearing Loss LIVE! Talks You Don't Know
Show Notes Transcript

With hearing loss we all have those moments where had we known we could have avoided a pitfall or had a better communication outcome.  Today we will talk about some of those moment we have experienced.  

You can read our full blog at hearinglosslive.com.  And if you have a you don't know moment you would like to share with us, please do!

Support the show

Hi, welcome to Hearing Loss LIVE! Today's podcast, we're going to talk to you about what you don't know. Because we all know you don't know until you know, right? And we find with hearing loss, there is a lot of that. So we're going to take our years of experience as a hearing person and persons with a hearing loss. And we're going to talk to you today about what you probably don't know. And hopefully, then you will know. I know I will give my perspective as a hearing person. Chelle Wyatt and Michele Linder will both give their perspectives of what they learned along the way. And hopefully some of it will help you. And if you see there's something we're missing, we hope you'll join us and tell us what you didn't know until you know. Chelle Wyatt, can you talk about some incidences where you didn't know and now you do and want to share with others?

Chelle:

Yeah, I can share quite a bit. There's many things I didn't know to begin with. And there are a lot of times that I was often angry because, for 18 of those years, I didn't know about, a lot about my hearing loss enough to be successful with that. I got by okay, because I was upfront about my hearing loss, but I didn't really live well with my hearing loss. And after learning a lot of different things, I became much better at managing my communication and learning to make it work for me. I wish that somebody had told me this many, many years ago, some of these things because I was angry, and I was angry, no one taught me. So there we go. So there's things that I could have done, I'd have been much more successful at. And one of the things was speech discrimination. I knew I had high frequency hearing loss. And it started at mild. And it goes down to the profound range in the audiogram. And that's called a classic ski slope hearing loss. And I like to joke that it's a black run. And for people that don't ski, black runs are expert runs for people at ski resorts. And what I understood back then too that I heard men better than women. But I didn't know until about 13 years ago, and somebody gave me a speech banana, which you can see on our blog, on our website, you can find a link to send you to one so you can check it out. So I finally saw where my hearing loss was in speech, with speech discrimination. I was missing the letters F, S and TH all the time, even with my hearing aids. I can't pick up those because once sound is gone is gone. And hearing aids don't replace that hearing. So when I learned that, I thought, wow, you know, all my words are full of holes. And that's why I hear the voices, but I can't always understand the words. So that was a huge aha moment for me. I also learned that I have a hard time with my particular hearing loss the K the "Kah" sound, P "pah", H "huh", Sh and CH sounds, "chu". So like those, those I can feel, but I can't really hear. So all my conversations are just like full of holes and I'm constantly putting in what I think should be there. What looks like is there and that's why I come up with some pretty off the wall stuff sometimes. Because my brain is like artfully filling in the gaps, sometimes it's right and sometimes it's like really wrong. And when it's really wrong, I share what I thought I heard, so people understand where I went wrong. And it's important for me to keep a sense of humor. I like that. It's better when everybody is laughing. Right? So it helped me manage my conversations a whole lot more. Once I learned exactly what sounds and speech I'm missing.

Julia:

Thank you. Speech banana is an interesting thing. I think anybody who hasn't actually looked at it and has had their audiogram should, because it really is a detailed way to see those sounds you're missing that you may not even know about. Michele Linder, not to age you, but you have a couple more years on both me and Chelle on experience. And I know you've got a lot of you don't know until you know. Would you describe some of your experiences with hearing loss and what you didn't know and wish you did?

Michele:

I am a little bit older than you two and I've had a hearing loss for well over five decades. So I have a whole list of things that I didn't know that I didn't know. And, you know, it started early. I didn't know that. How I heard as a kid in grade school wasn't how everybody else heard. When I flunked the hearing screening and I was diagnosed, the doctor told my mother, I was lipreading everything he said. So I didn't know that I was lipreading. I just did it. But years later, looking back and writing about my childhood experiences with hearing loss, I realized I was lipreading long before I was diagnosed, because I used to get in trouble in Sunday school all the time, because I would watch the teacher pray. And I was supposed to have my head bowed and my eyes closed. And she would look up and see me and give me a really stern look. So that that memory was like, wow, I was lipreading way back then. And that was like really young. So there was so much I didn't know in childhood. I didn't know that I could tell people that I, I had a hearing loss. I mean, it wasn't really keeping it a secret. But no one took my hearing loss seriously. No one gave it any attention. No one advocated for me. So I didn't know that I could do that for myself. And so I didn't really tell people I just really set to work trying out how to figure out how to get through public school for 12 years, with decent grades. And I was an expert fake hearer. And you know, I didn't know that faking it was not a good idea. It was robbing me of communication, but I was a master at it. So that was my strategy a lot in childhood. I didn't know that the reason I was exhausted every day after coming home from school was because of listening fatigue. I just considered myself a normal person who just couldn't really hear. It didn't occur to me that the concentration that it took to really get what people were saying through lipreading and other visual skills was just absolutely all consuming and tiring. So there, there were tons of things like that. I didn't know there were other people like me who couldn't hear. I really wish I would have known that. So that I could have learned some things from my peers sooner. But I didn't really have any peers until I reached my 40s and found, you know, other people who had hearing loss. I tried my first hearing aids at 21. And I just assumed that my audiologist was the expert. And if there was any information I needed about hearing loss or hearing aids, they would provide it. And I think that was kind of naive. Because it didn't make me question things. So that was another big thing that I didn't know. I also didn't know why sound hurt my ears. I asked every audiologist I saw and I got various explanations that were vague. But no one mentioned hyperacusis. No one mentioned recruitment. And again, I didn't find out about those things until I joined the SayWhatClub. And I was 48 by them. So that's a long time to go through life not knowing some of the really basic things about hearing loss. And again, what Chelle said, my audiologist never explained the intricacies of what my audiogram meant. I mean I knew what the marks meant. I knew what the graph meant, but I didn't really know the particulars of that until I joined the SayWhatClub, and there was a great article that Kim Ward wrote about the speech banana. And that was the first time I had heard it. And there were a lot of first that came after joining the SayWhatClub. You know, I found out that support groups did exist, even though I'd asked my audiologist for years, and they had no idea of any. So I learned about recruitment, hyperacusis, from the people at the SayWhatClub, I learned about CART, I experienced CART for the first time in 2009. And just a whole, you know, Encyclopedia almost of information that I really could have used in my 20s and early adulthood, so there's so much that we've learned that we didn't know. And I hear the people asking the same questions that I asked years and years, decades ago. And so I know that there are still a lot of people out there who just don't know, what they don't know. And that's part of why we're here. We want to help them, define those things and learn about those things.

Julia:

Thank you, Michele. I think you just gave me idea that we need to write a hearing loss encyclopedia. Hmm. Watch for that adventure somewhere along the lines. I, I agree, Michele, a lot of the stuff both of you have talked about. I hear all the time somebody coming in and saying, Oh, I didn't know that's what that meant by my hearing loss. Oh, look at this, I'm, that's why I can't hear my baby cry. Or that's why I can't hear my wife. And so I think it's great that we're going to try to help those who don't know, know. What I have experienced and helped me, whether on purpose or not, I don't think it was on purpose. It was kind of by accident. But, as a hearing person, and you have a loved one, a friend, a coworker, whatever, going through a hearing loss, there's a lot of things you don't know. And you really do need to know. And you need to reach out and talk to somebody who's maybe been there. One of the top ones I have that was very clear with my family is what hearing aids can and can't do. Hearing aids are great in a six foot circle. I'm sure we've talked about it and we're going to talk about it more. Hearing aids are great pending how many people are in that circle trying to talk all at once. Hearing aids have come a long way to help with that and to hone in on to who's talking. But it still takes a lot of work and effort. And a lot of family members with best intentions, say just go get a hearing aid so you can hear me, and then are really angry. Because guess what, it didn't solve the problem. So one of the things, one of the big things I learned is number one, as the hearing person who wants to provide support and help, you need to go to those audiology appointments. You need to maybe attend one of your spouse's social groups that talk about hearing loss and experiences and audiology. You need to be as invested as your partner, in that hearing loss journey. And it's not that I want the hearing person to walk that journey. They can't. They're never going to understand the hearing loss journey until they have one of their own or not. But the ability to do, to take in the tools. I think we've talked in the past again about tools. You want as many tools as possible. If you want communication to happen correctly, you need the tools. You need to know forcing your spouse to go get hearing aids is not going to solve the problem. Just because your spouse is eligible for a cochlear implant is not going to solve the problem. You are going to have to work with your spouse with how to program that hearing aid or cochlear implant to have the best communication possible. You are going to need to sit down with your spouse or partner and talk about changes. Maybe you liked the Lebanese restaurant down the street that has Friday Night Music and it's loud and it's fun and it's boisterous. But now your spouse has a hearing loss or partner-- I try to get away from spouse, I don't do very good with it. Sorry, people, partner, partner, I'm gonna say partner-- So, now your spouse or partner doesn't want to go, and you're mad and frustrated. Guess what? Get over it. I'm gonna be mean. Get over it. Sit down together and say, Okay, this doesn't work. They don't play music Wednesday nights, let's make Wednesday night date night. And we can sit in this area instead of by the dance floor. And maybe you go and instead of talking, you just sit in the silence. Again, another thing taught to me by my hearing loss friends. It's okay to sit in the silence. I understand that probably better than some hearing people. Because there are days I come home from captioning and if I've got it -- there's different levels of education in college, we all know. But when you get to a doctorate level, it's pretty intense. So I can go four to six hours. And I'm having to listen. So when I get home, I don't want to talk about my day, I don't want you to talk about your day. I want to sit down on the couch with my cocktail. turn my ears off, which I'm still jealous because I can't always turn them all the way off. And I just want to sit, I don't want to watch. I don't want to hear. I don't want to listen. And so when we, I think was it the University of Utah did the first, the first talk out at the Sanderson Center about hearing fatigue? And I thought, Oh my gosh, that makes so much sense. And so if I struggle as a hearing person who hears very well-- like, I've had the kids in the in the kitchen, say damn her Vulcan hearing, because I've heard something that they were trying to keep away from me. And I'm like, What are you saying in there? So if I struggle, you need to think as the hearing person, if I'm tired at the end of the day from having to listening to people, how hard is the person with the hearing loss had to listen to people? Chelle explained the holes. And if you haven't taken a speechreading class, whether you have a hearing loss, or you're a hearing partner, take one because it is amazing how difficult speechreading really can be. And then you put in hearing loss. And the holes. It just it will open your eyes on how hearing loss affects the individual. So I think one of my big you don't know until you know, as a hearing partner, you should be taking the journey. I'm not saying you need to go to every event that they want to go to to talk about hearing loss. But when that hearing loss partner comes home, ask them about it. What did you learn? What can I help you with? And leave it at that. And for each person, it's different. For me and my husband, it's we don't talk to each other from another room. And if we do, we're not going to hear each other. And whoever initiated that conversation needs to decide, okay, turning the water off walking from the kitchen to the front room and saying, wait, let's start over because you misunderstood what I heard. It's knowing that just, it's not going to be a quick fix, it's going to be life changing. And you need to learn to be okay with that. And I'm sorry, because I'm going to talk a little extra. And then I'll come to you, Chelle. Because I also want to point out as a captioner. We have a lot of I'll call them rules. We have ethics rules that we as captioners have to follow. But we also need to take some tools and be able to better communicate with our clients. We need to be silent when we're supposed to be silent. But we also need to be able-- when that Professor comes over and asks a lot of questions. We need to educate those professors, or those business owners, on what we do and how important communication tools are. Not just the CART. Whether it's the business owner asking what's the best way, if they're asking you, you say the client is the best person to ask. Make sure you're looking at them when you talk to them, and you should have the best communication. We should be okay with saying that, and I think we get a little nervous. We don't want to talk for the client, but there is no reason we can't educate people on hearing loss. In general, these are best practices. Please communicate with your client. That's it. I there's something in there I'm trying to get across and I'm not sure I'm getting it across. Might be making some people mad instead. But Oh, well. Chelle?

Chelle:

Yeah, no, you're doing good, I understand. Um, so I was just gonna say about hearing aid limitations, you know, so long my family thought that that, oh, she's got hearing aids now. And that fixed everything. And I didn't know it didn't. So I didn't know how to react. And I couldn't. And I couldn't tell them. I mean, there's nothing I can say, because I didn't know for years. And speaking of the limitations, with hearing aids or without hearing aids there are simple rules to follow. And that is getting my attention first, facing me the whole time that you're speaking and be within six feet. Because that six foot, you know, is, as Julia mentioned, the hearing aid limit, you know, after that the the effectiveness of the hearing aid goes down. Not only that, but I am lipreading even with my hearing aid. So if you're facing me and looking at me, I'm guaranteed to hear you better. There was an incident several years ago with my husband, who I had hearing aids in, but I was reading a book and my back was to him. And I guess he had been trying to get my attention behind me now for maybe an hour, you know, off, and on he was trying to get my attention while he was in the kitchen talking to his mom. And to me, all those voices going on behind me was just him talking to his mom. I had no idea he was trying to get my attention. And that was one of my big moments when I finally said stop. Because he was like, I've been trying to get your attention all day long. And you haven't replied at all. And I was a little shocked at first because I'm like, my back is to you. I didn't know you weren't talking to your mom. I mean, so I was thinking all these things. And then I stopped and I went, "wait a minute, did you get my attention first? Did you call my name?" And he goes, "No." I'm like, "was I facing you?" And he was like, "no." And I said, "Well, how am I ever gonna be able to do my part? If you can't do that part?" It's a no win situation there. So he has to do that. So I can do my part. And then we have successful communication.

Julia:

That is a good point. Michele,

Michele:

That hearing aid limitation, or knowing what to expect from hearing aids was a huge thing for me. I've never worn hearing aids. But if you add up all the trials that I've had, probably worn them for a couple of years. And I didn't know that hearing aids were not going to correct my hearing the way my glasses, correct my vision. And really, I didn't get much information on what to expect. And so at the end of the 90 day trials, I just felt like I was a failure. Like I was doing something wrong. It was my fault that I couldn't hear with hearing aids. Even some of the audiologist seem to get on board with that because they would be a little miffed that I wasn't going to buy the hearing aids. And that's that's a hard thing to put on your client or your patient to kind of blame them for a failure. And you know, I know that's not all audiologists, I'm not here to alienate anyone. There are wonderful people in every field. And, but I, I seem to have to-- I had to move around a lot. So I saw a lot of different audiologists, and some of them were military, so I didn't really have a choice. But that's another thing I didn't know until I joined SayWhatClub, that I could shop around for an audiologist. That my audiologist was not the end all of information on hearing loss. And I needed to find someone who might be more knowledgeable. I also didn't know that I should compare the price for hearing aids. Now when I joined the SayWhatClub and told them that I had just paid $7,000, almost, to try hearing aids for a year. And each of those manufacturers, four different manufacturers, it was the same price. They were gonna charge me the same price no matter what hearing aids I got, and I didn't know that audiologist are very different and how they mark up hearing aids. So that was a huge surprise to me. And I really wish I would have known about support groups earlier. Probably the biggest thing that I didn't know, that I learned was that self advocating, and learning how to do that well, and learning how to communicate well, and how to tell people exactly what you need from them for communication was going to drastically change my life. If I would have known that back in my 20s, you know, I wonder how much farther along I would have been and how much less of a struggle it would have been. The last thing I learned was, and I always thought I was just a hearing person who couldn't hear very well, I didn't feel like my experience was as valid as somebody who was culturally Deaf and used sign language. I didn't feel that my experience was as valid as someone who benefited from hearing aids or cochlear implants. And the moment I realized that, yes, my experience, even though I'm a lipreader, I have a profound hearing loss, I don't hear people's voices anymore, or my own voice, is okay to be who I am. It's okay. And my experience is just as valid as anyone elses. We're all different. Hearing loss is a diverse group. And I've learned a lot over the years. And I really am anxious to share some of the things that I've learned that people are looking for answers for.

Julia:

Thank you, Michele. And I think we've talked in the past one of the things I-- I, I like that I think we can offer, Self Advocacy is very difficult. For some reason, I, I don't know that that's just in hearing loss in general. But change is hard. Now you've got to talk to your friends and family and maybe your boss about what your needs are. And that can be scary. But that's what we're here for. Don't be afraid to come to us and say I don't know how to approach this. If we don't know, we will research and help you. I'm not afraid, Chelle or Michele to talk to a boss about why maybe CART is important. Why a caption phone would be a better tool and what those devices are. A lot of the tools Michele and Chelle have already tried. And they can say what will work and what won't for them. But it'll allow somebody to go to their employer and say, Hey, you know, can you help me these guys might help me figure out what we need. Many times I've gone in for an employee of the state and talked to human resources about all the different options they can use. Even even in the private sectors or maybe you have some privacy issues with who you work with and and what you're talking about. And we can help guide you with that. We don't want you to walk it alone, we want you to know, we want your partners to know, we want your friends to know. I had a client when I was working with the Division of Services to the Deaf and Hard of Hearing, we have a class that helps you understand hearing loss and communication. And one one of our meetings was about, kind of about what you don't know until you know. And what one of the clients mentioned was she didn't know to tell her friends Hey, when we're going to a restaurant, we need to do XYZ, sit here, have good lighting. What she was worried about when she told her friends is that they would be dismissive, and the opposite happened. So when they would go to a restaurant now we're talking prepandemic guys, when they go to a restaurant a friend started to say, Nope, nope, nope, we need that table over there in the corner. And so they would step up. If she was like not paying attention or in, or kind of worried about it. They had her back. And that's, I think one of the things you need to know. And I don't think people know your friends and family really do have your back. Yeah, they're not going to always be perfect. But if you approach them and say, let's do this together, I think they really will be helpful. I would like to thank you for joining us with what you don't know. Please come to our web page hearinglosslive.com where you can read the full blog. We go into a lot of the details that we learned along the way. Please reach out to us if you have questions and you want more help with your hearing loss. We're here for you. Maybe you are not struggling with your hearing loss but you've had a, you don't know until you know moment, and you'd like to share it with us so that, so that others can be helped with it. Follow us on our social media, like us. And we hope you're enjoying our podcasts. And we look forward to you next time when we talk about what hard of hearing is. Thank you.