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. We can help improve your communication obstacles in your day to day life.
We are turning One in September. In this podcast we talk about our favorite firsts that happened over the year.
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Hearing Loss LIVE! Talks One Year Anniversary.Julia:
Good morning. Welcome to Hearing Loss LIVE! We are in September and guess what? We have hit our one year anniversary for when our website came up and we started blogging and podcasting. It's been a crazy adventurous year for us. We had a lot of goals, we have still a lot more goals to meet. We will talk to you about all of that in this podcast. We are excited that you've joined us for this adventure. We hope you bring somebody in the future to join us some more with this adventure. We love the connections we've made with Hearing Loss Association of America's local chapters, we present quite often for some of them that are still doing zoom meetings. And that's super fun and exciting. We have done some local events as well. And we have our Talk About It Tuesday, which is absolutely one of my favorite things because that is a free open chat for --that's that's run by you guys. Right? You, you HoH's get to run it. What do you need to talk about? What do you need confidence in? What is your experience? What can you share with somebody that, that's all about Talk about it Tuesday, and it's one of my favorites? Maybe? Maybe we can put down on our goals that we make that twice a month? I don't know. If it gets big enough. That would be kind of cool. In my opinion. Chelle or Michele, what do you have? what's your takeaway from this past year with our Hearing Loss? LIVE! Who wants to start? Michele?Chelle:
Gosh, we're slow today, aren't we? So this is Chelle. I was thinking that this is our 40th podcast. And how cool is that to a land right on in even number, 40. So over this last year, we have done 40 podcast. We've talked about hearing loss, we brought you guest, the guest we've connected with like, oh, the early one was Hollie when she talked about parenting her son with hearing loss. We've had Vicki with theater captioning and how that works. Awesome. It's one of our most viewed podcast because it talks so much about behind the scenes, theater captioning. We've had Shanna Groves, the Lipreading Mom, it was good to meet her like face to face for the first time in, well, the only time and I've known about her for years. We've had Salt Lake Acting Company. Come on and tell us about all the accommodations they've given us. Well, not just us. They have ASL interpreting. They have open captions. They have sensory performances, and there was one otherJulia:
Blind. So they were wonderful. We've also had Liza Sylvestre. Yeah. She was, she's an artist with a hearing loss and she uses her hearing loss for her art. So that's super cool. Maclain, my favorite local kid. Oh, no. Did I say kid? He wouldn't like that much. But he is very active in hearing loss in so many ways. And he, he, he's always forever wanting to help us or anybody with hearing loss. You can always contact Maclain and work with him. We've had Michael Conely, the Deaf-- um what is it? What does he call himself? The deaf? Oh the Deaf Gay playwright. And how that played into his life, how his deafness or hard of hearing has played into his life. And Gloria, she's a recent favorite because she talks a lot about mental health. So those are some of the guests we've connected with. And I've really enjoyed them. Each and every one and I look forward to connecting with more guests in this next coming year.Michele:
You mentioned all of those connections and I think that's probably the highlight of the past year. Meeting some of the people that I've shared their blog articles and news articles over the years. Katherine Bouton, finally meeting her and talking and I think she gave one of the best descriptions of hearing loss, when she described being on the train, and it being so, not being able to hear, but it being deafening. I mean, hearing loss as a huge contradiction. Of course, one of my favorites was Liza Sylvestre, because we connected years ago, and we kind of have a special bond because we lost our hearing much in the same way. So we just really connected over that, even though she's the age of my children. I'm just very thankful that I connected with her and that she agreed to be a guest on our podcasts. But everyone has been great. And I think we presented a really good cross section of people living their life well, good cross section of people who recognize how underserved, the hard of hearing are. And we've gotten a lot of good information over the last year from all of these good people.Julia:
Thank you guys. Yeah, lots of lots of connections and connections are what we're about, right? We saw a need, all three of us know, we've seen a need where the connection needs to be stronger for the hard of hearing community and those with hearing loss, whether you're new, whether you've been around since a kid late in life deafen, and whatever it is, those connections are very important. Whether they're positive or negative, or just a cry, it's what you need. I think kind of boils down to we, we coined a couple of terms this past year. The first one we came up with is we help you help yourself, right. That's what we're about. We work really hard to have free services for those with hearing loss and their family and friends on purpose. Our goal is to serve as much as possible. Now, mind you, teaching classes, making classes, all of that stuff costs money. So we do have to charge for some of our services. We try to keep it very minimal. We worked really hard to figure that out. So that we could keep continuing to help you help yourself. The other one I love. I coined this. Okay, so maybe I'm the only one who loves it. But getting in the KNOW, it's so important that you know more about your hearing loss. You know more than a hearing aid. You know, more than a cochlear implant. You know what to do if they fail. Not freak out. Not not worry, how and that and that point of being able to do that, I think it's very difficult and scary. And so I like that we work hard on that. Those are some points, I think are very important takeaways for people to understand about. Just how much Hearing Loss LIVE! is important, at least to us three gals and anybody who can use the services. Maybe I'm wrong, I don't know. Chelle.Chelle:
I just wanted to say, we decided to use the word"Proactive" they still asked last year to which is important. When we say self advocacy, people's faces kind of glaze over. When we say being assertive, I think people think of that as aggressive in a way too. So we came up with proactive, be proactive about your hearing loss. Learn to manage your communication, and all the good. It's just obstacles out there. And we can always get around the obstacles and that's part of being proactive with your hearing loss, the more you can manage that. The, the easier communication is.Michele:
Yeah, it does take a lot of proaction to actually learn how to be out in the world with hearing loss. You know, I think one thing we've touched on that seems to be something that's spreading is how emotional hearing loss is. And you know, it was through a lot of our meetings, classes, the Talk about it Tuesday, people are allowed to express those emotions and a lot of times it includes tears, and I'm probably one of the most emotional people out there and there's nothing wrong with being emotional about your hearing loss. It's such a weighty thing that I don't think the hearing public or even hard of hearing themselves really realize how weighty it is. Because we're taught to try to minimize it. Not to be a burden on people. And it's a big thing. The trick is not making it into a big thing, learning how to live your life so that it's not a big thing in your every day, even though it's a really big bang. So I think we paid a lot of good attention to that emotional aspect that doesn't get addressed during the whole diagnosis process, or even beyond that. That's a big hole, a big gap in our treatment model, our care model for people with hearing loss, and I think we've touched on that in a good way.Julia:
Thank you, Michele. That's so true. You don't-- there's no services hooked to audiology. There should be. I hope, some of that build back better. We've talked in other podcasts, podcasts, help us get there. You know, another really great connection. And this is a little self-- I don't know if it's self plugs the right word. Julia can't find a words, imagine that. Another really great connection we've made is Global Alliance Speech-to-Text. I think if you're a CART consumer-- communication access real-time translation-- or caption advocate, use captioning for whatever. Live theater, on your TV, this is a really important nonprofit organization you should be involved with. Their goal is to better captioning in America. Well, I think worldwide, actually. But for me, it's a concern in America and the way it's going. And if you're a CART provider, this is a place you need to be involved with as well. Because quality caption matters, right? And if we don't, as hearing loss advocates support that, captions are not going to get better. Sadly, that's how kind of America works, right? Cheapest dollar wins, cheapest price wins, cheapest, whatever. And some of that needs to stop at a federal level. But global alliances are those types of consumer advocates that can help provide that national federal level change that we may need, you know, state levels, great federal oversight, maybe someday we should have a podcast about how how government works. You know, maybe a refresher course. But that was a very importantChelle:
Yeah, just moving that Windows pop up over again. So frustrating. Yeah, I joined the Global Alliance. And I've become a member of their task force, which is going to start asking people to review captions on TV and send in little videos. We're not set up yet. This is a future thing. But we're also going to have them on October 13th for quality captioning. And talking to us about what quality captioning is, especially on TV. connection. And I hope growth there happens. I hope we can I'm gonna bump back to Proactive for a minute. But you know, I used to think that hearing aids were all I needed with hearing loss because that's pretty much what we were taught. Here. Here's hearing aids got into the world, you're okay now. And I was not okay. And I wasn't wasn't okay for many years. So when I got to Utah, I went into their hard of hearing program and I took a lot of classes on hearing loss, including to Speech Reading, Living with Hearing Loss, Tinnitus. I just kept educating myself and as I educated myself, I kept connecting with different people, too. And between the education and the pupil. I've learned how to manage my hearing loss and be more proactive. And so I've come to think of those help promote that. Chelle. three things as the way to success with hearing loss. Hearing aids, cochlear implants, but not for everybody. But this was my path. Hearing aids, got'em in now, using a neck loop right now. Education and connections with people is number two. And learning to be proactive with hearing loss is number three. And those three things combined have helped me be successful with my hearing loss. And that's what I want people to know, is it it's not just hearing aids. If you want to live better with hearing loss, and I was always thinking, there's something more I know, I'm missing something. So that's why I kept up my search and there is more. So learn as much as you can keep watching the podcast, the blog. Connections. We made a beautiful connection, lots of connections, at the SayWhatClub convention in Nashville, a couple of weeks ago, we had a blast, and I may have met old friends and new friends. And even when I think I know a lot about hearing loss, as I listened to people in the workshops, I know I'm always learning. It never stops.Michele:
I'm just gonna add one last thing in writing in the blog this morning on this topic, our anniversary. Communication is central to hearing loss. And I can't bring up the quote in my brain, I think that part of my brain has died that remembers quotes, verbatim and, and the accreditation. But there's a quote, and I'll share it in the blog. "If everything in my life was taken away, and I could only retain one thing, it would be communication, because with communication, I could get all of the other things back." And that's so true. If I can communicate, I can do anything. And unfortunately, I'm not in control of being able to communicate in every situation. I went out to dinner with family and friends last night, I could hear, lipread the waitress 100%. I didn't even have to tell her that I couldn't hear. Other times, I have no idea what's going on because I can't get anything. It's those times that I need help. And help should be readily available because communication is central. And what I wrote in the blog this morning, talking about communication, I wrote communication is everything. And it is. And I think that's a lot what we do here.Julia:
Thank you, Michele. That that kind of coincides with my thought, when you're being proactive. I think we're gonna use that a lot more this next year. So be ready people. One of your proactive needs to be with your family. Your hearing friends and family are very important in your journey. And I'm telling you involve them right -- involve them right away. Sit down, communicate, connect, talk about your needs. If they need support, we are here to support them too. I get it as a hearing partner and friend and a family member. There are going to be rough days, there are going to be good days. And it doesn't matter how long you've had the hearing loss, this cycle is going to continue. So look for the supports. Learn those communication tools as soon as you can. Never turn anything down. That's, I think one of my biggest takeaways. One more round. Before I close this out. I want to talk about some of our services, right? So the whole month of September and through the rest of this year, we are going to crowdfund. Folks, we are funding this ourselves. We need help. We need support. There's many ways you can support us. You can Buy Us a Cup of Coffee, you can join Patreon. They start at $3 a month so that's only $30 a year. (timer noise) There's my timer. We're working on maybe some mugs and maybe some shirts. We've got a lot of ideas. But we need funding to get us through 2023. So help us anyway you can. Join our lipreading class, $50, what six and a change is what it is per class for an hour of live lipreading concept communication tools. We have different times will offer again in January. We hope to get enough students that come January we can also offer a live lip shape class. But again, it takes you guys helping us. And know we still have free services. We have our free twice a month email, that's a newsletter that Chelle puts together. Sorry, I was trying to say e newsletter and it came out email and stuff. But we email out a newsletter twice a month. We have our Talk about it Tuesdays, we have different Hearing Loss Association on our books for the fall. We'll keep you advised of that. We'll also share when Hearing Loss (HLAA) local chapters want us to help them get their fliers out, send them to us. We're happy to help push that forward. What am I forgetting? Am I forgetting anything? I don't know.Chelle:
I think we'll set up our how to handle large family gatherings again in early November, because where are we the most last in groups? And how do we manage that? So we'll set that up again in November for everybody to attend.Julia:
Yeah, that'll be awesome. That is a fun one. So. Help us move forward. crowdfund us, share us with your friends like us on your social media. Subscribe to our YouTube channel and our Buzzsprout stuff so that we can grow our patrons. Thanks for joining us. Bye. Check out Hearing Loss LIVE! on patreon.com or buymeacoffee.com or come to our web page hearinglosslive.com. Help us grow into 2023.