sallylou

Gee, thanks for making my concerns seem insignificant and pathological. I'm 45 YO, so my dance club days are over. I hang out with a more sedate crowd.

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khar59

And I am 50, so what's age got to do with it?

My contention is that when we decide to make adjustments because of our disablities then that's ok! It's ok, you are you and that's ok!

sallylou

I forgot to mention that I spend most of my time on kid activities. I'm a den leader for cub scouts. I volunteer at my kid's school. I like to spend time with my teenager. I'm in a "mom phase" right now. Sorry that I didn't make that clear.

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jillio

Even though you are involved with Mom activities right now, isolation can still be a problem. It is possible to feel isolated in a big group of people, if you feel you are unable to make a fundamental connection with them. And if you find yourself intentionally isolating, it can be a real problem.

Before I make suggestions, though, I'd like to give the hoh members a chance to share their solutions. If those aren't forthcoming, or aren't helpful, I'll jump in.

sallylou

Thanks, Jillio, for validating my feelings. One of the things that makes AD so helpful is to connect with others who understand.

I'm most comfortable at camp outs and activities in which there is a common goal. I'm comfortable with my family because they know my needs and are patient with me.

I know that you're deferring to the HOH out of respect, but I'd like to hear your suggestions, too.

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jillio

You are very welcome. I will give it a couple of hours, and if we haven't had a reply, I'll make a suggestion or two.

dogmom

all <long, please take what you will, just sharing my experience>
I will be happy to read Jillio's - and everyones - thoughts too - I was debating about coming in cuz I have not been hoh for long time - but, I have often been in situations where I am the "only", and/or others "get" something and it can be easy to feel confused and alone. It is very much possible to feel disconnected even in group. Perhaps this is not helpful, I don't know, but some things I have learned from having LD and other types of situations is - no matter how I seem to think I "only" feel a certain way, someone else may be struggling right alongside me, silently or un-obviously. For me, taking away all the artificial boundaries we create means to really look inside and see person's true spirit or energy, and see how we are connected in the place without words, without fear. If I am not afraid, I do not feel alone. Connection can happen in a wide variety of ways. One of the things that has helped me on a more concrete level is that I have done a lot of volunteering. You seem to do quite a lot of that, too Sally.
Another thought I had is that I have been with Deaf folks in a group or at festival and maybe I don't understand a lot of the sign and so maybe I end up not really being actively involved - but for me, that's okay. I go with the idea of being in that moment and enjoying what I do and not trying to grasp at all the nuances or taking part in a certain way.
Another thought is to have writing materials with you. When I am with Deaf that's what I do. Especially cuz I have great problem w/ASL numbers due to LD.

When I started taking Tai Chi, I would go and fumble along with a different class other than the basic one I officially was in, and do the all the movements as best I could, although I was not at the "technical" level of most of the people in that particular class- but I just jumped in and imitated and wasn't trying for a certain result, I was just enjoying the attempt. I have problems with spatial orientation and auditory processing also and so learning steps and sequences is challenging. It has taken me several years to get to the point where I am with it today.

khar59

WEll I think you are trying to say that when in a situation that you feel unsure of, you can ensure that you are surrounded by people you trust that will help you through it?

At this stage, after 10 years being an immigrant, I think it's easier being HOH than an antsy immigrant that doesn't think like the majority!

It always concerns me when I'm told of other hoh people who have isolated themselves. It's a lonely way to go. I've had to work on my mother and her perceptions of herself as an HOH with zero hearing without aids. It took alot of pushing and information gathering to get her to buy the best hearing aids she could and to buy a telephone for the deaf and to buy a loop system to try out here in the USA before sending her home with it absolutely enthralled.

I have always had the nerve to put myself out there and ask for what I need. There have been times I've been kicked for it, but I've picked myself up and got through it. It takes alot of guts and strength to push through all your fears and insecurities to put yourself out there at other's mercy it seems.

Of course I can still hear enough with hearing aids to get by quite well. I just hope that as I deterioriate that I will manage and stay resourceful and confident.

sallylou

Yes, I have anxiety about being accepted and being able to function. I have good HAs and I manage pretty well. In a loud and overwhelming situation, it's too hard. A party is boring if you can't communicate. I'm happy enough to be ignored my family members at mandated family functions, though.

I'm working on learning ASL so I can get involved in the deaf community. I think this will help.

Thanks, dogmom, for the reminder that we are all connected. The Dali Lama wrote about this in The Art of Happiness and it's an important concept. It's easy to forget that we're all connected when we live in a society that prizes individualism.

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jillio

May I ask you, sallylou, how bothersome this problem is for you? Do you find it regularly interferring with doing things that you would like to do, but find yourself not doing because you tend to avoid certain situations? Or is it more of a situation of "Well, I might like to do that, but would just as soon stay home with my family because that is where I prefer to be."?

sallylou

It's more the latter. I've always been a homebody and I don't like to be away from my kids (especially the 8 YO). If there was an event that I really wanted to go to, I would go. I'm just not a cocktail party kinda girl. I prefer to have a few very close friends rather than a bunch of acquaintances.

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dogmom

I like to have few close friends, too - as opposed mass group. Like rich friendship, even if we don't see each other often, as opposed to superficial-ness

jillio

Well, my advice would be then, if it isn't causing a problem for you, then it isn't something you need be concerned with changing. I am not HOH, but I am much the same way as you regarding how I choose to spend my free time. I don't see this so much as isolating, as in just knowing what your preferences are and making a choice regarding that. As long as you are still attending those events that truly interest you, I don't see this as a problem. I can understand your concern, however.

sallylou

Thanks for your support.

Sometimes, I feel like I should be more sociable. I know, my therapist says that I can't have "shoulds."

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CJB

dogmom

you same, CJB?

sally, it seems that you are very sociable on here

jillio

Yes, I agree. Sallylou seems to be very sociable on here. That is why I suggested that perhaps she wasn't isolating, but just making a choice regarding her preferences. Some people are just, by nature, more introverted, in that they enjoy solitary activities or small gatherings more than large gatherings. Nothing wrong with that at all.

CJB

Like sallylou I enjoy being social and outgoing online. In person is another story.

quirkylibra

I Definately feel isolated. In the last few years I have stopped going out as much. I feel afraid that I look like an idiot because I don't know what is going on. My hearing loss has made me clumsy too, so I draw attention to myself. I used to love going out, but it's so much harder when you can't understand your friends.

CJB

If there is one thing I hate about being deafblind, it's the fact that it is so isolating. It can be isolating to the bone.

SerendipityG3A

I can only imagine. Sometimes my vision gets a little screwy, and I think, "Crap, I don't wanna be blind too!" My chances of permanently losing my vision any time soon are very low, about as good as the next guy. I just wouldn't know what to do with my life without it

jillio

I agree completely. That is why it is so important to develop a network that allows you to stay in touch with others in the same circumstances. Often times, one feels isolated even within their own family. A group of peers that can relate to your day to day experiences is a valuable asset.

dogmom

I am involved also with forum for people with math LD. My mom, who I do enjoy spending time with as friend, does not believe I have LD and that I'm making it up<she has lots of her own past baggage to deal with, including abusive mother> ; my dad <whom I also enjoy spending time with as friend> kinda "gets" it - he and I just don't happen to talk about it much. So, having other forum <LD> is really useful for me because I can talk about how I may have had trouble understanding bus schedule and the person I was interacting with about that got mad, for example, or how clerk or someone in line with me at store got impatient because I was slow with the change. Or I mis-counted it. And it is good to share with someone else to whom same has happened, how it was to explain to a worker trying to get to my house for a repair, for example, that I would need to have this person talk to husband so my husband can explain to repair-person how to get to the house because I don't know North, South etc., nor most of the street names, I just know what it all LOOKS like and I know what street I live on. And I can discuss the times someone has said - oh, you seemed smart - when I say I have LD in relation to something in conversation. So, I understand about having a network to whom you don't always have to explain stuff, and someone could even add - yeah, in that same situation I did THIS....

ms_redcat

I'm a very social person, but I have started avoiding many events, to be honest. A lot of sounds hurt, so going out to clubs or concerts is flat out. Going to the movies is iffy too -- most theaters seem to turn the volume WAY up!

What's more of a problem is finding spaces to hang out one-on-one with people -- like going out to dinner, or for a drink after work. I live in New York, and many of the restaurants here are just too loud for me to understand the conversation. And work socializing is an issue too -- I can talk one-on-one, but if it's a wine-and-cheese after a colloquium, there are lots of conversations going on and it gets to be too much.

I have started going to a sign meetup, which has other HOH/late-deafened adults there. That helps!

CJB

When you say things are too loud, are you referring to a problem of recruitment or hyperacusis or something else? Just wondering.

quirkylibra

I'm sorry, how do you deal with that? Do you find that people in your life have a hard time understanding? I am lucky that I am not blind, that must be so difficult. Losing your hearing is difficult enough, I can't even imagine.

quirkylibra

I agree that restaurants are very loud. I wouldn't say they hurt me, but I cannot understand the people/person I am with because of all the backround noise. Sometimes I just take my HAs out and try to make do. As far as the movies, I can't understand them at all, so I have to say no to friends who ask. Sometimes they get angry because they say the movies are so loud, how can I not hear. That makes me angry. I hear all the noise, just can't follow what is going on. I would like to learn asl, but I school has been really hard for me and I don't have much time. I guess when I do, it may be better for me.

CJB

Well there are some other deafblind folks on this forum that will hopefully also answer this question to show we all deal with it differently.

I try to surround myself with people that are willing to sign, go to a quiet place to communicate, repeat themselves without getting impatient, and maybe even type to me on my computer. So far I've found a few people but I still feel isolated in most situations. At least there are those few instances of communication and feeling part of group that I can look forward to.

Another thing is deafblindness kind of forces you to entertain yourself a lot of the time since you're not getting much information coming in. I have taken up talking to myself and making myself laugh when I'm bored out of my mind.

I also spend a lot more time on the computer because online there are no barriers or boundaries in communicating with other people and the only thing that separates me from anyone else is that I need transcripts with any videos.

quirkylibra

Well, after I starting to lose my hearing, I noticed that people aren't as willing to work with me as I would have thought before. Have you noticed that? People in my family especially. They have no patience for me and "forget" that I do not hear very well.

Btw, I talk to myself and constantly laugh at myself too

CJB

Definitely noticed that. It's impossible not to. Most people just throw up their arms and give up. I really appreciate the rare individual that actually tries to communicate with me anyway.

My family always forgets I'm hard of hearing, and even sometimes that I'm blind. They forget to let me know what's going on. They've even been known to leave the house without telling me, let alone inviting me along with them.