Wish to connect with people - Severe Hearing Loss

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Re: Wish to connect with people - Severe Hearing Loss

Postby inspiresuccess » Wed Oct 19, 2016 11:22 am

As far as hearing assisted devices -- I made phone calls.

The libraries don't have them. I used to go to lectures frequently and stopped because I can no longer hear. Speech reading/lip reading is going to take a long time to learn. In the meantime, I can't go. I can go to the power point presentation from the docents of the art museums and look at the photos, but without hearing what the docent is saying, I won't learn anything. Looking at pictures isn't enough for me. I WANT TO LEARN ABOUT ART and BOOKS and all the things I'm passionate about. I used to go to the lectures about MUSIC. Of course, I can listen to the music samples, but without hearing the lecturer I don't learn anything new about the pieces. Sad and discouraging.

My church and my former church don't have them because they are small churches. I can no longer hear anything there. I prefer small churches. The larger churches offer them but I don't know if they will help. The schedule of the churches vary and I really don't like the time frames for the larger churches. One part of church service that I can still do is a 30 minute chant. Since I know the words to the chant, at least I can participate in that. But I really would like to hear what people say up at the front of the church. Sad and discouraging.

I went to the movie theatre recently to watch a ballet movie. Century Cinema (Fandango) shows HD Movies of the Bolshoi Ballet and the Met opera. I didn't bother to get the assisted hearing devices because ballet is all visual and music. The operas all have English sub-titles so I'm okay there.

What makes me painfully lonely watching these is not having someone to go with me. I felt so lonely when I got home from the recent ballet movie I stayed up late and watched crappy, stupid TV and pigged out on a huge amount of food. Yuck. But I couldn't face the loneliness. I've tried putting flyers in places, I've tried Craigslist, I've tried telling everyone I meet that I'm looking for someone to go with, I tried putting a listing in the newsletter of the Widows Group that does outings. If anyone has any other suggestions for how the heck I can find someone who loves ballet and opera but can't afford the tickets but can afford $17 at the local movie theatre, I'm open to suggestions.

I'm a "Diver", as Barbara Sher would say. I'm passionate about EVERYTHING I'm interested in and love talking about them. Ballet, Opera, Art, Classical Music, Fashion, Design. I'm really low income but very crafty about finding ways to see what I want -- like going to the art museums the first Tuesday of the month when there is free entrance. But finding people to go with me has always been a challenge and I hate to go alone. I like talking ballet (choreography, composers, set design) during the intermissions. I love talking about an art exhibit afterwards and comparing artists. I love talking about composition and comparing composers after a concert. Honestly, because of my passion I tend to drive people nuts with the details of what I like talking about. But I'm totally open to going to things with people who just like to "look" - at art, dance, etc. I just try to pull back on the details.

I'M MISSING MY LIFE BECAUSE OF HEARING LOSS AND PEOPLE LOSS.

Elaine, I'm trying not to be discouraged, but I pretty much am on a daily basis. I know it takes time. But I've been on a survival level for the past FOURTEEN YEARS OF MY LIFE. :( :( :( I'm finally at a point in my life where I have housing, transportation, and good health. Finally, the basics are all covered. Now it's time to spread my wings and fly again. I can finally get out of this apartment and reclaim my life. But...now no hearing, no people. Lynx used the word "weary" in response to my overcoming so much and now facing even more challenges. It's a good word. I'm so weary of taking on challenge after challenge after challenge. People refer to me as a "survivor". I always reply, "I don't want to be a survivor. I want to be a "thriver". I want to contribute to the world I live in, not just survive it.

I WANT MY LIFE BACK NOW, IF NOT SOONER as my first husband used to say.
Last edited by inspiresuccess on Thu Oct 20, 2016 9:31 pm, edited 1 time in total.
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Re: Wish to connect with people - Severe Hearing Loss

Postby inspiresuccess » Wed Oct 19, 2016 11:24 am

Whew! I guess I needed to spew a lot more than I thought I did on this issue. I've been dealing with it alone for so long. Thanks for listening/reading my rant!
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Re: Wish to connect with people - Severe Hearing Loss

Postby SquarePeg » Wed Oct 19, 2016 1:37 pm

I think the important thing is that your attitude has done a complete reversal for the better. Your self-advocacy is admirable. Continue being tenacious and you will succeed!
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Re: Wish to connect with people - Severe Hearing Loss

Postby inspiresuccess » Wed Oct 19, 2016 3:10 pm

Thanks, SquarePeg. I can use all the pats on the back I can get.
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Re: Wish to connect with people - Severe Hearing Loss

Postby Elaine Glimme » Thu Oct 20, 2016 10:45 am

Inspire, when you write, I get the impression of tremendous energy just bursting out of you.

Of course you want everything to happen faster than it's going to. And yes, feel free to rant. (Great ranting, by the way.)

You have taken some good steps. Finding HLAA is probably the best one. You could learn so much there. And I think you will like having some friends who are going through what you are.

Another small step - you've explored a lot of possibilities with closed captioning. Some work, some don't. Useful info. You won't know what doesn't work unless you try it.

And you've been isolated for a while, you said. Well, now you're getting out among people.

And you got your hearing aids tweaked - another step.

You can't learn to read lips in a week, but I think it takes less time than you expect. You don't need to learn every word, just every sound. Some of the things you've studied will probably help you remember how words are put together in sentences. Maybe you could talk into a mirror, and watch the way your lips move - my idea; I don't know if it will help or not; I thought I'd just throw it out there.

Oh, and a really big step - You've decided to do something about your hearing.

So you've come a long way, Inspire.

When I wrote, "be patient," ( I know - horrible words) I was thinking that we're an "instant society." There are so many things we can have right away - I bought a book in about five minutes on the Internet. I can brew a cup of coffee in about ten minutes. - No need to pick the beans or roast them. I can microwave a pasta dish in a few minutes. These are things that used to take hours or days. I think that's why I like the stepper thread so much. I always think I can get anything done (like writing a novel) in an afternoon. I can't even get my house cleaned in an afternoon any more. Anyway, the stepper thread makes me think it's okay that all I got done was three paragraphs, or two loads of laundry, and it keeps me moving forward.

Anyway, feel free to rant, good steppin' so far, and good wishes.
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Re: Wish to connect with people - Severe Hearing Loss

Postby inspiresuccess » Thu Oct 20, 2016 11:04 am

Inspire, when you write, I get the impression of tremendous energy just bursting out of you.

I think the energy it took to hold it all in, is energy I'm freeing up to do something about it.

(Great ranting, by the way.)

Yeah. That was a good one, wasn't it. Probably the best rant I've ever done!

Maybe you could talk into a mirror, and watch the way your lips move - my idea...


I love that idea. I'm going to try it. There's something called "marking" in ballet. You mimic the overall movements just with your hands. It "marks" it in your brain. I think that's what this idea will do, too. I'll let you know how it goes.


Oh, and a really big step - You've decided to do something about your hearing.


Yeah, I know. It's just the barrage of ideas that have come up have overwhelmed me. You're right about the steppers thread. I have to break this down into baby steps. Right now, it's just a huge pile of...hm...what's a good finish to that sentence?!!

I think what I'll do is write all the steps in the order of what's easiest first. Then check them off as I go. That might help.

Thanks for you feedback, Elaine. I always appreciate the thoughtfulness of your responses.
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Re: Wish to connect with people - Severe Hearing Loss

Postby inspiresuccess » Wed Nov 09, 2016 5:58 pm

I had such a horrible time with my hearing loss at a get together at someone's house last night, that I want to give up and stay home and never go anywhere social again. I was planning on going to a Christmas party that I love each year and emailed them today and said I wasn't coming. I don't want to go anywhere anymore.

I just did a search for online chat groups for hearing loss. In case anyone wants to check them out, here they are:

http://www.healthyhearing.com/report/52 ... aring-loss

http://www.hearingloss.org/content/mess ... chat-rooms

http://www.healthfulchat.org/hearing-im ... -room.html

http://www.deafandhoh.com/terms_of_use.html

I haven't tried any. I wanted to escape my life today and watch a movie on Hulu but even with headphones and hearing aids and sitting 1 foot away from the screen trying to read lips I had to give up. Does anyone know of affordable headphones that work well? Mine worked fine a year ago and are now useless for me, just like my hearing aids. I can't afford all the fancy ones I see out there.
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yet more loss and grief

Postby Lynx » Wed Nov 09, 2016 6:52 pm

Oh, Inspire, what angst and challenge. I sit in compassion with this unwanted journey of yours wishing I had more to offer.

Lynx
"Vision is not enough. It must be combined with venture. It is not enough to stare up the steps; we must step up the stairs." Vaclav Havel
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Re: yet more loss and grief

Postby inspiresuccess » Wed Nov 09, 2016 10:10 pm

Lynx wrote:Oh, Inspire, what angst and challenge. I sit in compassion with this unwanted journey of yours wishing I had more to offer.Lynx


Thank you. Hug felt through the internet waves. Compassion brings tears to my eyes. Sad smile.
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Re: Wish to connect with people - Severe Hearing Loss

Postby Elaine Glimme » Thu Nov 10, 2016 10:38 am

More hugs to you.

I know what you're going through. Even well-meaning people tend to leave out the person with hearing loss when there are more than two people in the conversation. I know we sometimes talk without including my mother in law, and Tom and Chris are as well-meaning as people get.

It sounds as if you need some time away from this problem. But I hope, after a while, you'll check out the chat rooms you mentioned, and try visiting with your friends. One person to one person works the best. Especially since you're still learning lip reading.

For my two cents worth - try something easy first - like lunch with just one close friend, someone who is willing to make the extra effort for you to understand him/her. Be really honest about what you can hear and what you can't. And yes, it will be frustrating, even under the best circumstances.

That's all I have. More hugs.
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for those tête-à-têtes :: alphasmart

Postby Lynx » Thu Nov 10, 2016 11:09 am

Hi,

What if a conversation with one friend (one on one, tête-à-tête) were conducted face-to-face and with writing assist?

I have a cool keyboard primarily marketed to the K-12 education market, but I found it and love it. It's called AlphaSmart.

It's light, runs on 3 AA batteries for 700 hours (not a misprint) And you can set the resolution to what's comfortable to see.

from here: http://kadavy.net/blog/posts/portable-word-processor/
It has INSANE battery life. Never search for an outlet in a cafe again. This thing gets a full year of heavy use on 3 AA batteries.
It powers up FAST. Press the “on/off” button, and you’re writing within 5 seconds.
Your work is ALWAYS saved. You may find yourself habitually hitting “Cmd+S” on the AlphaSmart, but it doesn’t matter. Your writing is saved instantly. You can power it on just to write a few notes, then immediately power it off and get back to what you were doing.

Stop the presses! It seems this product was discontinued in 2013. So only aftermarket (used) ones are out there. I'll look at Ebay next ... yes, there's a lot of them posted (190) starting around $30. You'll also need to make sure to get the manual, though it might be found online, and the cable to connect it to your laptop or desktop computer. Most of the basic stuff is pretty straight forward and there's a useful "help" command built-in. You can always ask and if I don't know it I could look it up.

Still, for $30 it might be worth a try. There might be a way to seek out one to borrow and play with via craigslist or freecycle.

Lynx
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Re: Wish to connect with people - Severe Hearing Loss

Postby inspiresuccess » Thu Nov 10, 2016 11:46 am

Here are some more specifics of what I'm dealing with.

I need to buy a TV and get TV cable. I don't because of financial reasons but I have enough $$ to do that now and will do that in the next few weeks.

I watch movies on Hulu online on a 15" computer monitor. I don't have a laptop. If I watch a DVD that has subtitles, I can watch CC, but I have to sit a foot away from the computer which is not comfortable since it's not a laptop. The largest TV that will fit in my little apartment is a 32". When I get that, I can have CC and hopefully be able to read it from the distance of my recliner chair, which is 6.5 ft away from the TV. My apartment is so small there is no way to rearrange furniture so this is it. I would still need a really good headset because in order to have the TV loud enough for me, it would bother the neighbors. I'm really grateful that this apartment complex is dead quiet and I want to keep it that way. If I start being noisy the neighbors will think it's okay and then the whole place will stop being so blessedly peaceful.

So... I have to... buy a TV, figure out how to get the CC to work, get a really good headset and start paying for cable.

Unfortunately, my apartment is so small there is only room for one extra person to watch TV with me. Since I only have one friend, and she rarely visits, the TV would be for my own sanity. I don't watch much, but the only way I have to listen to music is a tiny one CD player. With TV, I could listen to music and have a remote to switch around to different types of music (without having to get up to change the CD). The music would help me a lot when I am knitting. I can't watch anything when I'm designing knit designs so having music would make my life better.

All of this would help soothe my soul as far as dealing with the trauma of the hearing loss.

So, first step is to deal with setting up a TV situation that would help me work and help me escape my life by being able to watch TV.

I will set up these goals in the Steppers thread -- buy TV, order TV cable, figure out how to use CC, and buy a good headset.
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Re: Wish to connect with people - Severe Hearing Loss

Postby inspiresuccess » Thu Nov 10, 2016 12:17 pm

LX,

The gadget you mentioned is intriguing. It could be a backup in oneto-one in situations where it's too noisy. My audiologist adjusted my hearing aids to hear directly in front of me so it helped us in a small cafe where I couldn't hear her before. But in a larger cafe it might not work. This gadget might actually turn out to be a sort of fun game once we got the hang of it.

Also, I can't afford a laptop. I could use this for my writing, wherever I am and then plug it into my desktop computer to transfer the info. Eventually, I want a laptop but it's financially out of the question now. I finally have an IPhone which I haven't learned to use. A Kindle I haven't learned to use. And a TV to buy and learn how to use. But after all that, I think I'm going to see if I can find this gizmo you're talking about and experiment with it in one-one situations. I'm a cafe lover and sitting with my one friend and chatting is something I love to do. My hearing loss appears to be getting worse so in the future I might have to totally rely on something like this.

I'm getting my hearing tested next week to see the actual amount of hearing loss I have. It seems a lot to me. But we'll see the actual results. He's adjusted the hearing aid in every way possible and it doesn't seem to help at all. Disappointing. I'm going to have to get aggressive with myself about learning lip reading. I wish I could take a class but they're too far away. Motivating myself to do it alone in my apartment sucks. If I had a laptop at least I could learn it other places -- like in the laundromat which I hate.

EG and LX, thanks for reading here and giving support and suggestions. I'm pretty miserable and at a breaking point emotionally. Your support really helps. Thank you.
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Re: Wish to connect with people - Severe Hearing Loss

Postby Elaine Glimme » Thu Nov 10, 2016 6:36 pm

Hi,

Lynx, in my experience with my mother in law, what you say is right on. One-on-one, with writing to back up the talking.

Inspire, I get the feeling that you want to retreat for while, so the TV makes sense. But I hope it's just temporary. And if I'm wrong, just forget I typed this.

What your audiologist did will help, but it's a challenge anyway. So, please, small steps.

As far as reading instead of hearing, that works well. Whenever I have something really important to tell my mother in law, or whenever she's just not getting what I'm saying that's what I do. And we have a very inexpensive, easy-to-use system. :D Pen and paper. :lol: Cost - about a dollar. :lol: :lol:


More hugs and good wishes.
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Re: Wish to connect with people - Severe Hearing Loss

Postby inspiresuccess » Thu Nov 10, 2016 9:23 pm

Thanks, Elaine :D

This is a long story. Here's what happened that was so overwhelming. I'm in a prayer group but once the "meeting" is over, everyone leaves right away. Being invited to this person's house who is a prayer group member and has other members come to watch the debates was great for me. It was difficult to hear people but there were only about 4 people plus me. A struggle, but I did okay.

The election night were more people -- people from church I haven't seen in a year or two so I was pleased to see them and wanted to talk. But the combination of the sound of the TV plus way more people talking was overwhelming. I couldn't understand anything plus the overall noise was way too much for me. So, I did something that made everyone uncomfortable. I muted the sound during a commercial so I could hear people talking. They all stopped talking -- total silence, which was weird. So, I tried it the next commercial. Same thing. This time I asked why everyone stopped talking when the sound was muted. Uncomfortable, nervous laughs. No one said anything. The third time I did it, I started talking, trying to explain that I was doing it because I couldn't hear them and the hostess got impatient, took the remote and said she'll just turn down the volume. So then, not only could I not understand anyone talking, I couldn't understand the people talking on the TV either.

I decided I'd go into the living room to rest my ears during the commercial. Then I realized there was no way I could tell when the commercial was over. Then I just sat there trying not to cry. The hostess finally came in and said there was another TV in the other room I could watch. If I wanted to sit in a room alone and watch TV, I could have stayed home and done that. So, I went home. What blessed silence after all that noise.

That's when I felt like I don't want to go anywhere social anymore. It's more restful and peaceful at home alone. Being in a noisy atmosphere where all I here is loud noise with no human interaction is really stressful and frustrating and pointless. It makes me even more miserable than being home alone all the time.
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