Hearing Loss LIVE! Talks Being Comfortable

January 2023 for Hearing Loss LIVE! was all about being comfortable with hearing loss. And not being comfortable with hearing loss. Chelle and Julia recap their thoughts. What did they learn?

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Transcript

Hearing Loss LIVE! Workshops: 0:00

Being Comfortable with hearing loss.

Julia: 0:06

Good morning, welcome to a new year with Hearing Loss LIVE! We are going to roll out a couple of different things. So we hope you will subscribe, Share and like us. And then join us as we do workshops monthly. We hope that they help you. We'd love to have you in person, it will be the first Tuesday of every month at 6pm Mountain Time. So adjust your timezone for whatever time zone you're in. We hope to bring. How am I going to say this. We hope to shake up the norm. Okay. We want to move back to grassroots necessary needs that both people new to hearing loss, those who have hearing loss but have forgotten, and all of their hearing partners. Whether you know somebody with hearing loss, or you're new to it. So I'm including co workers, family members, employers, businesses, small and large. There's something you're going to get from our monthly workshops, we're changing it out a little bit. So this workshop, and following workshops will be available for free for a small period of time. And then you can have full access, including a journal type worksheet, if you like to journal, and some other stuff on our Buy Me a Coffee. We will have more about that as we continue into the year. If you like to participate with others, we hope you come to the workshops live, where we will roll out a different theme each month, talk about it with other individuals in our hearing loss community. Bring your hearing partners. Let's get in the know, right. So it's January. I don't even know the date anymore. January 2023. And we are going to talk about being comfortable with your hearing loss. We have some ideas. Our workshops are based on our experiences, our personal experiences, our group experiences with our support groups that we both participate with. And some of it is going to come from our years with services to Sanderson Center, Division of Services to the Deaf and Hard of Hearing -- whatever it's called, it's different for each state-- that we've seen through the years, right. So Chelle go ahead and get us started. Because of course I'm filming so I don't have my notes up. And we all know I will go off somewhere into the[laughter] great abyss if I don't stay on track, right?

Chelle: 3:22

Do we ever really totally stay on track? I don't think we do. This-- giving presentations was part of my favorite part of my job in the past with the Sanderson Center and arranging for other people to come in. Know that this week, it's just Julia - or this month- it's Julia and I. Next month, we're bringing back our friend, Gloria Pelletier, to discuss another emotional aspect of hearing loss with you. So stay tuned for that. That, well the blog we'll come out with on January 26, for that one, and then the first Tuesday of every month will be a workshop now. So this one is being comfortable with your hearing loss. And you know, this was a hard one to think about a little bit. What does it mean? And like so many of us hate it. I'm sure you read in the blog, or if you haven't go back to the blog and read it. How much trouble I had with, not accepting, but being comfortable with my hearing loss because I had an exhusband who used it against me. So I thought everybody's going to do that to me. And I found out it wasn't so. So I changed my thinking patterns a little bit and became more comfortable with my hearing loss. And I know people are asking me what that means. And it really means a bunch of different things. So for me, I want to be comfortable in life, with and without my hearing aids, that's another aspect of it. Because, you know, after the one husband helped me become more comfortable with hearing loss, I was fine I was there. But another aspect of it is, I was wanting to be good in life with and without hearing aids. And I saw an audiologist a couple days ago. And I went in without hearing aids, and he pulled up my audiogram like my one from four over four years ago. And he goes, "I am really surprised you're doing as well as you are, without hearing aids right now." And I told him, I want to live life with and without my hearing devices. Now, I still have some hearing left, I have a mild loss the low tones, and I'm profound in the high tones, high frequencies. So you know, I want to go out in the canoe on a lake. I don't necessarily want to take my hearing aids with me because you know how expensive those things are. I don't want to chance hitting a rogue wave and having the canoe flip and whoop there goes my hearing aids. And I told him while I'm skiing I don't want to ski with my hearing aids either. Because I've splattered before [laughter]. Things go every which way. Skies, poles, you know, whatever. So I don't want to chance to my hearing, hearing aids playing out and not being able to find them either. So this comes about because I was at a SayWhatClub convention in Virginia and we went to Busch Gardens as a group. There were several of us getting ready to go on the log ride. Gotta love the log ride. But hearing aids, right. A lot of us just went ahead and took off our hearing devices and gave it to the person who doesn't ride rides, but she's willing to hold everything for us. And we had one lady who really wanted to go on the ride and be a part of the group, but she was too afraid to let go of her hearing device. It's not even like, to me, it was like well I didn't even have to hear on that ride. And who wants to hear me anyway, because all I'm gonna do is scream my head off, because that's what I do for fun. But she, she set things down, and she started to get into the log, log ride. And then she just picked up and kept going across because she she didn't want to chance being without hearing devices. I was like, I never want to be where I'm missing out on things because of my hearing loss. This was in 2013. So that's when I actively started seeking out how to live my life without hearing aids as much. I like my hearing aids. Lipreading is less work with hearing aids. But I don't want to depend on them so much I can't function otherwise. My first real time without hearing aids was at Burning Man. Several of you know I've gone there. And one of the first things I heard, this was back in 2002, was that the powder-- the dust storms, it's a fine talc powder, even a friend dumped a vial of it in my hand at one point, and I was like, eww [laughter]. And she kind of flung it around. And I was like oh man that would get in my hearing aids and cause major issues. So the for the first time in my life in a social situation, I left my hearing aid at home. I didn't even bring'em. I didn't want a chance I'm getting dusty. Stolen. You know not that that happens there are a lot but you know, I'm protective of my hearing aids cuz as you can tell. I kind of feared what would happen It was dark at night people were not always in the light. I thought ehh, and there's music in the background and all that. But I really found most people were accommodating me and I don't I didn't have one person. Get angry about repeat or anything. So I picked a really safe environment to go without my hearing aids and try things out. Julia?

Julia: 10:08

Well. It is a good environment. Because let's be honest, those who without hearing loss, those that are hearing partners at that event, aren't hearing any better than you are probably at some point, right? So they need to, they need the repeat as well, that's, that's part of learning how to be comfortable is knowing that. I feel bad sometimes, because I think I have such an advantage on others that I've watched over the years, as a hearing partner. Boy, did I change the blog around a couple of times. So I think, hearing partners don't know how to be comfortable because-- and this isn't wrong or right. Those with hearing loss don't know what they don't know. Right? So how, as a hearing partner, do you know, if your hearing loss partner doesn't know, communication wise, and needs. I've watched over and over people be frustrated because they say just go get a hearing aid and it will be normal again, and it's not. So they're not comfortable. You're not getting comfortable because the hearing aid didn't make the communication better. I think that's a knowledge even before you have a hearing loss in your family, you need to know. Making mom go get a hearing aid is not going to help communication. Or your loved one. Well, a little bit. Yes, I understand that. But what what hearing partners don't know, is that little bit okay. They don't understand it at all. The hearing loss partner is not told that in the audiologist, right? They're not told that at the audiologist. I'm not trying to be negative, I'm telling just truth, right. I don't know how many times I heard, "well, they got a cochlear implant and they still can't hear me." Well, What are you doing to work on that?"What do you mean, they got the cochlear implant?" So it's very important as a hearing partner to be comfortable with, what does that individual need? I have been told Denton is going to have dementia. His brains going to change sound, maybe. He's gonna isolate. Well, having come talk to me, I'll convince him he can get hearing aids. The man doesn't want hearing aids. He hears just fine with his Bluetooth. Maybe now that they're over the counter, and he decides to get an audiology appointment. Maybe we'll try that. His hearing is not moderate. It's not progressive. It's from years and years of loud noises, it at some point might get worse. He is 73 years old. But what he wants to hear, he hears right. If I didn't know what I know about hearing loss, and the rules of communication, I guarantee we would be at each other daily. Right? I guarantee I would have been seeking out dementia help. Because sometimes he's so off the wall with how he response. I know if I'm talking to him with the water running in the kitchen, and he says What did you say? I don't get the right to be angry, right? I'm not facing him. I'm not in the same room. Odds are the conversation isn't even that important. So knowing to be comfortable when and if has allowed us to take some of that anger factor and notch it down. Does that make sense? And if he wants hearing aids, and wants to go to the audiologist, we'll go together we'll take a list. We do that already with other doctors. You know, I'm comfortable with that. But how do we get hearing partners to understand, what you do to be comfortable with your hearing, hearing aids or not, is not our choice. It's not up for us. I mean, I gotta think a little bit because I'm trying to come up with, if you're not talking about it, you're never going to be comfortable, I think is what I'm trying to get out. If you are not talking together about, hey, I really can't hear this. And I'd like to and the hearing partners and saying, what what can we do to make that happen? Do we write it down and talk to the audiologist? Do we- that makes sense? Not saying it's perfect? Not? I'm not. But I do think you need to take out how long have you been married? And what is hearing loss? Because I think the two get lost in a marriage situation. And I think children get frustrated with their parents in general, right? Taking care of mom and dad. And so those are two aspects. I would like to figure out. I don't know, help those who really want to be comfortable with hearing loss. Again, I went off the rails. So.

Chelle: 16:25

Yeah, hearing people I see just comfort with hearing people in did they hear that right? Or did they hear not, you know, not right? Is it, you know, questioning glance and it's our slow response sometimes. And getting used to things and Julia's called this th "wait for it" thing. Just let them process the information and then be able to answer. So I see that as one of the uncomfort zones. I know I am {unsure} now, sure I'm so comfortable with my hearing loss now that I went ahead and bought me a yellow safety vest that says deaf on the back. And I just got it. I opened it today. I was excited. I want to see if this helps me when I'm skiing. Because people yell out things behind me when I'm skiing, hiking and biking, and I never hear it. So these are the three places I'm going to try it. I'll keep y'all updated on how that goes. And that brings up another comfort level for people. Does that make us vulnerable? So for some people, this is uncomfortable. But for me, I don't think it will be that's been comfortable with her in last mean that we're always comfortable with hearing loss? Oh, no. I don't care how experienced I am and how educated I am, I'm going to run into a situation that's entirely new. And I have to figure it out again. And there's frustration right there. So sometimes we're uncomfortable. While I'm not uncomfortable with my hearing loss, so much I'm uncomfortable with the situations that come along. Sometimes I'm going to be too tired. And I'm not going to deal with it right. And that's uncomfortable later on too. So there's always something that's going to come up.

Julia: 18:34

Well, you know, this is where employers and employment can be uncomfortable, right. And some of the some of their uncomfort can happen by they don't really understand hearing loss. They understand Deaf culture, I think that's well taught in a supervisory position. But they are not taught the different levels of hearing loss. So they make assumptions that make the situation uncomfortable, right. So those situations can be tricky. But if you know more about hearing loss as an employer, you don't fall into that. You get better with the what does that look like for you moments that we have in the human resource situation? Being comfortable doesn't mean you accept your hearing loss all the time, does it? Maybe you don't accept it at all, but are you comfortable is-- I have that question and I think that's a personal, answering question. I don't we can't I don't know if you and I can answer that. But does being comfortable with your hearing loss mean, you stop accepting the way you hear? Can, Can you continue to look to have as perfect hearing as you want? And still be comfortable? I don't know. I don't know how that looks. I think that's a good question, though. Because I don't think you need to stop looking for or investing in whatever you want to for your hearing loss. But you can be comfortable with those days that you have to take the hearing aids out because you don't want them broken, or you don't want the extra dirt. Is there a way to do both? I don't know. I don't know the answer to that. I would hope the answer is yes, you can keep looking and at the same time still be able to say I'm done today, I need to take these off, and this is how we're gonna communicate for the rest of the evening. That makes sense. And I know I've been thinking that question through a lot this week.

Chelle: 21:20

And can we be comfortable with our hearing aids. Because this last I've worn five different brands of hearing aids. And I've done well wearing all of them, except with this last brand that I've had. I don't like it. I should have returned it because I wasn't good with it to begin with and swapped up for a different brand. I have another friend who loved that hearing aid. Same exact hearing aid, same time is I got mine, and she loved it. So it's different for everybody. But you have to find the sound that works for you. And they all have different sound processors. So okay, I used to hate my hearing loss. You read that in the blog. [Laughter] I hated being between the worlds. I was not hearing, I was not Deaf. And I had no place to go I felt like but I did. I started hanging out with the tribe and joined the SayWhatClub. Again, the local HLAA Chapter and our hard of hearing Program in Utah has been a very good program. So I learned a lot there and I found my place again. And I learned and I kept learning and it became a mission of mine. Mission? It's a passion to help other people with hearing loss now. Making Oh, since I've learned about accommodations, I became a lot more comfortable with my hearing loss. I know what to request what will work where and how. So I always felt like I have these options. And that helped me to be more comfortable as well. Here's the next part. What's that saying that we are only as sick as the secrets we keep? I thought well hiding my hearing loss was something I had to do. But it actually gave me more anxiety than anything and faking it and bluffing constantly is hard work. And people don't, didn't know what the heck to think of me. She just dumb and why is that after one answer and why does she keep walking past me at the store? So this is our next part and I'm going to turn it back to Julia now. No?

Julia: 23:59

I don't know what it is. We're almost 30 minutes so.

Chelle: 24:02

Okay.

Julia: 24:03

What's the next part?

Chelle: 24:05

Um this is that you were going to say something about you were family will miss diagnose you.

Julia: 24:15

Oh. Bluffing leads to a whole bunch of problems right? Even when you know better, right? I don't know what this has to do with being comfortable. I've kind of lost my train of thought sorry. When you don't involve your family, with your hearing loss, you're going to have all sorts of mistakes happen. And I'm kind of referring to the mom situation maybe. You know, mom or dad are starting to get old and that's why they're acting the way they are. Is it? is it not? Oh, there's some dementia. Hmm? Maybe. I think that people automatically go there instead of checking all of the availabilities. I totally lost my train of thought, sorry.

Chelle: 25:21

That's okay. This was the last part. And, you know, I think what she was trying to say is we get misdiagnosed all the time, when we're not upfront about hearing loss. When we're not comfortable enough with our hearing loss to talk about it, we're most likely not going to be proactive about our hearing loss and being up front about it and our communication needs. And it's so much easier when we can do that. That pretty much our end message right there.

Julia: 25:54

I yhink my thought process? The reason I came up with this had to do with? How do you know it's not dementia? How do you understand hearing loss better? I got lucky, right I've been involved with Hearing Loss Association of America for over 20 years. And even knowing what I know, I still thought my husband was having senility not hearing loss, right. So how, how do we get people before the hearing loss hits the family to understand, um, understand the difference? How to look for the signs? Are they isolating? Are they are their friends calling and saying, well, something's wrong and not right. But you're seeing something different? Because maybe you have a better communication style. Those are all keys that I think people don't understand. How do we train doctors on that? Just your family physician to understand that because I don't think they understand it either. So so get in the know before you need to, I think is is really important. I just don't know how to get hearing partners to get more involved before the hearing loss. That that reach really needs to happen. What was my thought.

Chelle: 27:26

Okay, we're going to tie this up. And you know it during our live workshop, we would have a lot more participation and questions and ideas coming out. We really think the live workshops are the way to go. If you can plan for the first Tuesday of every month. Check our website, register for it. And I think that, that's our conclusion. Thank you for joining us on video.

Julia: 28:00

Make sure you share with those around you that might need to learn more about signs of hearing loss. We hope you join us in person, we always like to meet our community and help them as best possible bring a hearing partner with you. But we also know there are folks who are still trying to navigate this alone, for whatever reason and that's okay too. This will be up for about a week and then it will move over to our Buy Me a coffee where we'll have some journaling workshops to go with it. And some other items. Please watch for that to roll out. I've got the website, of course down here at the bottom. So look forward to seeing you next time. Bye!