Hearing Loss LIVE! Talks Vulnerability

Adapting to hearing loss can be overwhelming no matter how you got here--suddenly or progressively. Hearing Loss LIVE! wants to help you take control of your hearing loss. Because we know that when you do, you will live more fully with fewer limits. 

But hearing loss comes for some at inopportune times leaving us vulnerable.   What happens next only you can decied. You can hide in isolation, never to have an embaraassing moment. Or...

Take control of your hearing loss and step in to and embrace the vulnerability that comes with life.

In our latest podcast we talk past experiences that made us vulnerable. How did we handle them? What we learned. What we wished we knew. And ultimately how embracing vulnerability helped us take charge of hearing loss and help us become who we are today.

Family members, friends, coworkers. Whoever you surround yourself with can also learn what they may not know so they too can support you correctly. 

If you like our content please share, like, subscribe. We need you to help us grow.

Transcript

Hearing Loss LIVE! talks vulnerability. 

Julia: Hello, everyone. Welcome to Hearing Loss LIVE! This week's podcast and blog is about vul-- Let's try that again, vulnerability. You won't hear me say it often because I can't seem to get it out of my mouth, right? Guess I'll have to step out of my comfort zone on that one. (laughing) Practice some dictation exercises on that one vul-ner-a-bility. That's as good as it's gonna get. So we want to talk to you about how do you get out of your comfort zone and get into that next level with your hearing loss? How can friends and family help you support wise with those types of situations? Michele, or Chelle, who would like to start to talk about how you learned how to deal with your vulnerable side when it comes to hearing loss? Michele?

Michele: I can go, since you're gonna make us choose. You know, vulnerability, a lot of people look at it as something that is awful, bad thing. Something you need to avoid at all cost. And asking for any kind of help is a bad thing. I kind of learned that growing up from a witnessing my parent. And it took me a long time to question that. I used to be pretty fearful as a kid. And I applied that to my life as I grew through teenage years and young adult. But it didn't occur to me to apply that to my hearing loss as soon as it should have. And you know, it's perfectly natural when you lose your hearing. To feel like you want to avoid vulnerable situations. So situations that you don't manage well, where you might have been embarrassed or you might have floundered or stumbled for your words. I mean, I didn't even know how to tell people I couldn't hear. And I used to stumble all over that. And that's perfectly natural, and you shouldn't feel bad that you're in that place. But you don't need to stay in that place. And I came across this really good quote about vulnerability. Gay Gaddis who is an entrepreneur and female business owner. And she says, "when you shut down vulnerability, you shut down opportunity." And that is so true. That was true in my own experience. And for the first three decades of my life, I kind of tried to avoid those things that were uncomfortable. And when I finally decided I needed to not do that I needed to use those tactics I used to get over being like, feeling like vulner-- I'm having trouble finding words today too-- feeling vulnerable and life. I got over that somewhat. So I could use those same tactics to get over situations that I wanted to shy away from. And, you know, shame thrives in isolation. And shame is closely connected to a vulnerability. And you need to learn the skill. You need knowledge. You need confidence, and you're never going to gain that if you don't make yourself vulnerable. And I'll let Chelle share what she has to say about it. And later on, I'll tell you a little bit about how I overcame looking at vulnerability as a bad thing, something to avoid.

Chelle: Hello, this is Chelle. You saw me-- if you're on video, you saw me switch out of my neck loop and plug back in my earbuds, take out my hearing aids and all of that because the heater came on. And when the heater comes on, the hum in my neck loop goes up and it's very hard to concentrate. So off with a neck loop and in with the earbuds (laughing). So vulnerability, I can say it (laughing). The hard of hearing are very vulnerable. I mean, we're always doubting ourselves, right? Did I hear this right? Should I say something? Did I hear that something? You know, because something one time we said was so off the wall that other people laughed at us? So we felt an extreme amount of shame and you know if we get enough of that we shrink back into the background. And we don't want to tempt vulnerability because we don't know how to deal with it. And I think for myself, it was borrowing courage from people who have already been on the path that I was on. And I borrowed thier courage, I learned everything I could from them, and I could finally start stepping out of my comfort zone. So that's how I did it. I know, one of my favorite books in regards to hearing loss, and it's not really hearing loss at all. It's Brene Brown's The Gift of Imperfection. I had so many notes stuck in that book, you know, like, Oh, my God, this is hearing loss. This is hearing loss, you know. And she talks about the shame storm. Okay, so when we talk, when we say something so far off the wall that somebody laughs at us, or they look at us, like, you know, like, are you crazy? Are you insane? There's something wrong with your brain. Nothing wrong with our brain. That's what's wrong with our ears. And it's just hard to keep up. So but we get that intense shame storm. And we don't know what to do. So we isolate. It's easier to stay home and read books. It's easier to stay home and watch movies with captions. It's easier to be around those closest to us because we are lipreading them and hearing them better than anybody else that we come across. Strangers are very hard to get used to. And if we, you know, if we start panicking, of course, it gets worse and worse. So, you know, isolation seems like the answer, but it's really, really not. We do need to step out of our comfort zone. And I remember having to ask for "repeats." The courage, I needed to ask for repeats instead of just bluffing, nodding my head, because I was afraid of that shame. And it was because one person, my first husband, was really bad about shaming me, and, and when we divorced, and I moved on, I realized he's one of the very few that did that. Almost everybody else wants to help and will repeat. So I kind of was able to step out a little after that, ask for repeats and say upfront that I have a hearing loss. And my gosh, that takes courage to, right? I'm hard of hearing, I have a hearing loss. So it's courage, vulnerability, shame, all that if you haven't read Berne's book, I say get it. Because it can help you step out of the comfort zone and learn more.

Julia: Thank you. I'm thinking this through because I didn't have enough time with grandma to work through vulner--vulnerability with her her being vulnerable. But I look back now and I'm sure that's why she bluffed as much as she did. And honestly, it backfired on her in the last, later years. I mean it really did backfire. I spent a lot of time explaining to people "no, she doesn't have dementia, she can't hear you and she doesn't want to admit to it." And I don't know that I handled that right. So I'm thinking of it as a perspective of a friend or a family member. How do we help you step out of that vulnerab-- vulnerability in a better way? Does that make sense? What advice would you give for family hearing family friends and members of your family? What has helped you? If anything, and what advice would you give? Does that kind of makes sense? Okay, think about that for a second. Because I think our goal is to support you,right? Whatever that-- whatever that looks like. To help you get through the isolation and know that there's better people out there. Some are, some are better than others in helping you. But this is where I think you can support your hearing loss family or friend with support group, finding out information and helping them, going with them, so you can learn Hey, what's going on? This is what comes to my mind. Being that type of support, but give me some ideas on what you would like people to know about? Chelle, your eyebrows are up. Do you want to start?

Chelle: Yeah, they were. Because when you were talking, I was thinking about how many people deny hearing loss in the beginning stages? No, I'm not there yet. Which is just one thing my friend, Sue says a lot when she's out at health fairs. A lot of people tell her I'm not there yet. And sometimes, they clearly are when they tell us that. So I think it's do to part of that shame. And they don't deal with their hearing loss until it's so bad, that it's unavoidable. But the thing is, is if you start dealing with it before, then it's a lot easier. You know, it's just I guess, again, the courage to take that next step early, and get used to the hearing aids before sounds are like, Oh, my God, what is that? You know, instead, if you start dealing with it early, you go, Oh, wow, you know, that's such and such, you know, and that sounds more like, really should? So I think, not waiting until it's so severe would it be helpful to a lot of people. And you know, so what, I can't hear. I wear hearing aids except when I have to use the telecoil and the heaters on (laughing). I use hearing aids. So what? I use glasses too, but that doesn't mean anything. It's kind of the same sort of thing. And you know what, there's another thing for a long time, I felt shame about wearing glasses and hearing aids at the same time. So I did not. I wore contacts for years to avoid that. And I would say about seven years ago, I was like, so what I'm gonna wear glasses and hearing and I don't care anymore.

Michele: I think the same thing came to my mind. Don't wait. When you're new to hearing loss, you're gonna feel uncomfortable. And when you feel uncomfortable, that's the trigger that should push you into doing whatever it is that makes you feel uncomfortable. Because that's the only way you're gonna get over it. And my moment of clarity came after an entire year of hearing aid trials. I tried three different brands, manufacturers over a year, 90 days each. And at the end of those trials, I wasn't getting any benefit. And that's due to my hyperacusis. I'm kind of a an odd case. So not everyone has the challenges with hearing aids that I did. And at the end of the trial, the last trial I went in, and I looked at my audiologist and I said so what do I do now. And I mean, I was I was tearful, I was pleading for help. And she smiled and wished me the best and handed me a Harris Communication Catalog. And I walked out of the office, crying and then the next day I decided, no one is going to teach me how to be in the world with very little hearing, I'm going to have to teach myself. So that very next week, I took myself to an out of the way shopping mall where I didn't think I would run into anyone I knew. And I went in every single store because at that time I didn't know how to even tell people that I had a hearing loss. And that's what I practiced. I called myself, deaf. I called myself hard of hearing, I used hearing impaired, and I gauge how people reacted. And I floundered I stumbled over my words. And I even told some of the people hey, I'm conducting experiment today, I'm hard of hearing and I'm trying to figure out how to tell people that without being such a big deal. I mean, I would just say what's true. And you know, by the end of that day, I pretty much had desensitized myself from that feeling that vulnerability is a bad thing. I was learning so much. I was still stumbling. I wasn't perfect, but I was learning. And that day, that moment is when I just felt so empowered. Like I can turn this around. I need somebody to help me and but there is noone. So I'm gonna have to help myself and that's what you have to do. You have to open yourself up to those moments that are vulnerable. Those things that you do don't do well, because and you know, when you set them up yours, you're doing it in a context that you create. You're not waiting for that next uncomfortable situation to come up. That's probably the worst time to confront vulnerability. It's that unknown, you don't know what's going to go wrong, but you're setting up what's going wrong. And so that gives you power that gives you control. And that was the way that I overcame, feeling vulnerable and wanting to isolate myself. Just kind of stepped back out a life and just avoid everything that was uncomfortable. Not everyone has to do it the way I did it, we're all different. But until you confront discomfort, you're never going to learn the skill that you need, and gain the confidence that you need to live well with hearing loss.

Julia: Thank you. So as we know, hearing loss doesn't, one size does not fit most, right. So this won't be for everybody. But here's a thought that just went through my head. We, when we're with our loved ones, we don't want them to be vulnerable, do we? We-- I'm talking as a hearing person, you want to even do it with friends, you want to take care of them, right, you want to watch out and hover and make sure they're okay. And I think sometimes in relationships, that hovering to try to take care of someone who's dealing with their hearing loss becomes too much, too protective, too-- it makes for incohesive relationship. So then there's anger on the part of the person with hearing because they've got to take care of this person, and feel like they have to hear for them. And there's, there's discomfort or anger on the part of the person with a hearing loss because you've taken away your, your, um, ability to be by yourself or do things for yourself. And some relationships. That's just how it is, in general doesn't have anything to do with hearing loss. But I think, Chelle, and I could be wrong. But I think over the years working at the Center for the Deaf and Hard of Hearing many couples that that change was very hard for them. And they they didn't understand you don't need to do everything for them, let them let them stumble, let them ask you when they need help. I think it's very important, especially those facing a new hearing loss or a change in hearing loss. That, broken record, sit down and come up with, okay, we're going to the grocery store. If I do this or whatever, look at you tap you fill me in on what's going on. Otherwise, let me, let me do my thing. And being comfortable with that. And knowing that that is a form of taking care of your loved one, right? I've said it before, I'd let grandma communicate on her own, nobody would ever know she was even wearing hearing aids half the time. And then she looked at me and it was the look she gave me I knew I needed to fill in that she was not comprehending something. But I think we see that struggle over and over because we do want to take care of our loved ones and we don't always understand that doesn't mean doing it. For them. It means letting them stumble and when they fell being there for them and saying okay, what can we do different next time? Am I far off base? Because I think that's something that a lot of people miss Chelle?

Chelle: I was just gonna ask you, don't you have a mama bear tattoo? (laughing)

Julia: Why yes, yes, I do. 

Chelle: I do have one more thing real quick. And while, while you guys we're talking, I realized actually what my exhusband did was bullying. He bullied me. So I think a lot of us have experienced that bullying. And I've run into many people who remember the bullying as kids with hearing loss because kids are so cruel. And it's like they keep that with them forever. So I'm thinking if you are one of those and it took me several years to break out of what my husband, exhusband did to me, just start rethinking that. You know, am I just doing this because back then, are people really like that now? So step out and start practicing. Michele, she kind of did it in the bold way, I think. My way was practicing with waitresses, and grocery store clerks and bank tellers, because they're paid to be nice. They can't be mean to me. (laughing) So that was sort of my safety net. So, you know, practice, going to eat by yourself. That's a huge one that a lot of us won't do. A very vulnerable position there. So go out to eat by yourself this week, and practice what you say and how you say and communicating with the waiter or waitress. 

Michele: You know, I think it's hard with family and close friends, for the reasons that you both outligned. I mean, you do kind of not want to burden the people you love. And we all kind of feel like it is a burden, I wish I would have found much sooner a way to say to my family and friends, I don't know what I need. I don't know how to communicate what I can't hear. We're going to have to figure out this together. I wish I would have had the thought and the mindfulness to say that right up front. But I didn't do that until I was well into my 40s. And that really was a disservice to my family, because I took them out of the mix of helping me. And I shouldered all of the burden, the responsibility and the failure, myself. And that's weighty. That really is not the thing to do. So I think if anyone can find a way to say, hey, I'm floundering here, I don't know what I need. I don't know how I'm going to be able to communicate again. Could you maybe help me figure this out? And get several people working on it doing research. Because you don't get this information, usually from audiologist or state services. I mean, sometimes you do, but I didn't learn about CART from a state service and my local state service office in Minnesota I don't feel like they understand hard of hearing needs as much as they do as the needs of the culturally Deaf. So get, get your family and friends to help you right off the bat.

Julia: Thank you. We're down to about two minutes. Any other thoughts you guys want to put in? I would like to say, if you are uncomfortable going to your friends and family and you're floundering, do not do it alone, come to hearinglosslive.com, or send us an email info@hearinglosslive.com. We're happy to sit down and talk it out with you. Nobody should have to be on this journey alone unless they really want to be. We do know from many, many years of experience that services and support groups are not well known. And we hope to change that. But in the meantime, look for a Facebook SayWhatClub group, look for your local Hearing Loss Association of America. And come join us if nothing else on our Talk About It Tuesday and meet others that you can discuss and and learn new new tactics to deal with your hearing loss. We hope this helps you understand I'm not even going to try to say vulnerable again, Chelle?

Chelle: I just wanted to mention that on May. Sorry, I had to look, on May 3rd, we have a workshop on self advocacy. Please check our website about that this will help you with your family and maybe stepping out of your comfort zone.

Julia Thank you, Chelle, I forgot all about it. And I think in May we're also going to do a family workshop. So hopefully you can check out both and I think we're still working on the date on that one. So we hope you join us. 

Question for you. Did you ask for assistive listening device while you were at a venue this week? Did you maybe ask for captions at a play coming up in your local theater? I don't know. We might ask those questions every time we do a podcast because we want to know your answers. We hope to see you in our May events. Bye .

Join Hearing Loss LIVE! May 3 for Self Advocacy workshop and May 17 for Family Connections. Register today hearinglosslive.com