November Gypsy

I see what you mean...I begin to think that I would be less prone to depression, on the whole, if I could just be comfortable with saying and feeling 'I am deaf.' The HOH thing is more comfortable on one hand, but on the other, I have a feeling I'm deluding myself...hence the great tramua in not getting the new hearing aids I thought I was going to get. It's not that they were going to change things that much, but I got so hopeful. I'm going to have to think about this, I see.

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dogmom

for kind thoughts, Jillio!

Am sorry you felt depressed yesterday, November Gypsy, is today a better day?
Bear with me, but speaking as someone who does not have children, I bet a lot of people who are new moms or who will be new moms, are scared regardless of how they're parents were or what the situation is. Sometimes for a variety of reasons things get pretty challenging for me/us too and I try to take a minute at some point to observe and think, how is THIS moment? Can I find peace in this moment?
Yes, I think having LD has helped me with the hearing loss because I already have something where I had to learn various ways of "being" in the world and coped with mis-understandings and frustrations. It helps that my husband has been very hoh since birth and he is severely deaf without his HA's. I also happen to know several other people with various degrees of hearing loss in my area; two of whom are Deaf <one being my friend/ASL tutor who I got together with last week>. My Tai Chi-practice friend happens to be hoh and another friend of mine is oral deaf. My mom, in her late 70's, has a age-related loss which she readily admits to.

Jalestra, hope u and your husband will have better times and can learn from each other. I know it can very hard -

jillio

You are just in the process of completing your acceptance. But you see that sometimes the way you feel about it emotionally is not the same as the way it might be seen from a logical standpoint. The key is to bring the two into line with each other. As you said, continue to think about it, and you will have new insight.

November Gypsy

You are right, of course. I didn't really suppose that my fears about motherhood were particular to me. I just get so worried. *Smiles* Thank you so much for asking. I am, let us say, more resigned today. Yesterday was bad because I found out that I won't be able to get the new hearing aids I was looking forward to and because I realized that I hadn't eaten in three days, which means that I'm not handling my anoxeria as well as I was. Today, I am a little more able to face the music, as it were. Thanks again for asking! *Big hugs*

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jillio

It sounds as if you have a great bunch of people making up your personal support system. That is very important.

November Gypsy

I see. Yes. I will do that. I have a feeling my husband will find it just as hard, if not harder, to go from HOH to deaf. But, he'll be supportive, I know. It just didn't really occur to me that I could be considered deaf yet...I had assumed that it was only when you couldn't hear anything or when you had a CI. That's silliness, I know see.

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jillio

It is natural to relapse from time to time into your anorexic behaviors. But it also sounds as if you are aware of it, and do what you need to change the behavior. That is the key to your recovery....realizing when your behaviors are unhealthy for you and doing what you need to do to change them. Don't be too hard on yourself.

November Gypsy

It's good to know that it's not an unusual thing to happen, I guess...but it's scary. It would be so nice to be able to eat and enjoy it, you know? Oh, well. At least I managed to eat today, that's the important thing. I can't be not eating with a husband and a baby to care for, that is, quite honestly, the only reason I can make myself eat at all. Thanks for the hug! Much appriecated!

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jillio

You are correct...the important thing is that you have eaten today. And a little fear is often a good thing. Being a bit afraid of lapsing back into full blown anorexia will keep you doing what you need to do to prevent that.

dogmom

Ohhhh, I understand you had hoped to get the new HA's and now that has changed....impermanence is hard too. And it is understandable and fine to be scared about motherhood regardless of other peoples' fears - just saying I don't think you are alone in this fear....any parent support groups in area? And/or support group for people HOH? But I think the fact that you are AWARE is sooo important, especially about the eating -anorexia is very scary! My first year of college I dealt with that, don't think it was ever "full-blown" but I remember the feelings I had at the time.

Yes, Jillio my support system for hearing loss better actually than the LD, which is EXTREMELY difficult for many people without LD or who aren't in Ex.Ed field as parents or teachers to understand.

I am glad for both your words <big smile>!

jillio

Oh, yes...I agree that LD is much more difficult for others to understand. So many with LD are accused of just not trying hard enough, or of "faking it." That is just so unfair.

dogmom

yes, that perception of "faking it" is challenging! One thing some types of hearing loss and LD have in common from what I read and in my experience is that both situations can be variable - I can "get" something one day and the next day I don't recall the sequence or my understanding just isn't there. Lotta times someone give me directions, either driving or to do some series of tasks and by the end of the third or fourth step I'll remember something about turning "Left" <also have to remind me of what "Left" is> or doing one such-and-such but the rest of it all jumbled up. One of the tricky things for people not familiar w/LD -

defgrl

There are times when I seem to "hear better" than at others. Sometimes my tinnitus is "very loud" and other times it hardly bothers me. Sometimes a HA helps and sometimes it doesn't. I wish people who can hear "normally" would at least TRY to understand a little bit.

I think it is "nutty" when Hearing people INSIST that I am Hearing, and then I will go complain about it to somebody in Signs with voice off. My signing is getting closer and closer to ASL. I am glad since I got dx'ed with sensori-neural hearing loss. I was VERY scared at first, but I am dealing with it. I feel a lot better since I decided to "ID" as HOH.

Jalestra

Jillio, I don't think you're being harsh I think you're misunderstanding me. When the whole family came down with a vicious case of the stomach flu, I had to take the 3 youngest to the ER at different times. So here I am puking sick and wishing I was dead, sitting in the ER for which ever kid. I actually ended up spending a total of 18 hours in the ER while I was that sick. I had to push on past how I felt to take care of my children and husband. I accept it in that situation because all of us were sick and I'm the one who CAN push past it. However in this case, I don't feel that I should have to as I'M the only "sick" one, metaphorically speaking of course. I feel that in this case, my husband should pick up the slack while I "nurse" myself. However, if he can't accept the situation now how can he be there to take up that slack? He will suddenly be dealing with it.

Gypsy, I'm with Jillio, the fact that you acknowledge your back tracks is great. I think the key is though to accept that you fell and fix it and vow to try harder. Don't beat yourself up over it. It can just drag you down and perpetuate that behavior. When trying to get over my vicoden addiction it was such a huge disappointment to me when I fell and got up looking for a pill. I've always prided myself in my mental strength and here I was, a slave to a stupid pill. So when I fell it was a blow to my ego, which made the need to escape worse. Learning to accept the falls was very important to help the whole process. I'm not sure, as I've never been anorexic, how parallel alcoholism and drug addiction and anorexia and bulemia might be...but it seems that any time you try to conquer these areas, getting over the mental hump is always similar.

defgrl, it seems to me that many folks ID deaf as completely unable to hear. So if you can hear some, then you aren't deaf. I thought the same before my hearing loss, now I know there is so much in between. Which is why I always said "I don't hear well".

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jillio

Ah, but the point is, you are not the only sick one. Loosing your hearing affects the whole family. Each in different ways, but it affects everyone. You will need to do what you need to in order to adjust, and your family members will need to do what they must in order to adjust to both the changes you are going through, and the changes they are going through. This is not something you can do for them. You must allow them to do it for themselves.

SaraB

I think I'm a bit off topic, but I was wondering if any late deafened folks have picked up lip reading? I am having a heck of a time... Is it something you can practice or learn, or does it just happen over time?

Bottesini

Lip Reading, Speech Reading Lessons on Video - Learn Lipreading and Speechreading

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jillio

Not off topic at all. If it is a concern for you, it belongs here.

November Gypsy

I dunno. I just sort of started doing it more and more as my hearing loss progressed. I am pretty good at it, but I wonder if it's an individual thing. I wish I could be more helpful!

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Jalestra

I'm like Gypsy, it's just something I've gotten better and better at as my hearing loss has progressed....I've developed a new dislike of "mumblers", those that hardly move their lips when they speak..LOL

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DeafDoc1

I couldn't agree more. For me personally, I chose to identify myself as Deaf for several reasons:
1. I felt that the label HOH would give people the message that I could hear something, and resulted in people shouting at me or exaggerating their mouthing of words, neither of which facilitated communication
2. I'm lousy at lipreading
3. I have chosen to use ASL as my preferred means of receptive language
It just makes more sense for me to use the label Deaf

I am really struggling with that. I have tried some of the DVDs and practice with friends and my terp, but really find I'm not very accurate. I am perfectionist (occupational hazard). Spoken English has so many nuances in inflection and in the adjectives, prepositions, and connectors that a single wrong word can change the entire meaning of a sentence. That is unacceptable to me in my work. I have great respect for those oralists who have honed their skills. In Deaf gatherings, I sometimes rely on Deaf friends to "interpret" for me with hearing people. I'm not one of those who can easily "pass" as hearing or HOH despite my clear speech.

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November Gypsy

I know what you mean. Sometimes I seriously wonder if they weren't puppets in their previous lives or something.

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jillio

Good one!

adamledlow

Hey all,

Bottesini was nice enough to recommend this forum for me after reading my "intro" from yesterday. What a huge relief to find others who are late deafened! In all honesty, I didn't even know the term existed, so to find a whole room full of you is a bit overwhelming (and nice). I see most people start off with a little intro to their situation, so I hope you don't mind if I copy and paste some of mine from the other forum:

I was born hearing and lived a hearing life until age 19. In March Break of that year, my Mom complained that I never seem to listen. I told her I couldn't really hear her, so we went to get my hearing tested. Turned out I had severe hearing loss and had been getting by (subconsciously) by lip-reading. I got my first pair of hearing aids a couple of months later.

At the time, I played in a (loud) band and so I attributed the hearing loss to playing in and attending concerts (and one plane ride a few years earlier when I had a bad head cold). A bit scared by the hearing loss, I tried to get my act together: quit the band, attended far fewer concerts, and for the ones I did attend, I would wear ear plugs. That seemed to do the trick until about six months to a year later, when the hearing aids didn't seem to be doing their job anymore. So I got newer, more powerful aids. A year or so later, same thing. My hearing continued to deteriorate, until my loss (ski slope loss for anyone who knows what I mean) had trickled down into the "profound" category, where it remains (fingers crossed) today.

Audiologists who had been happy with the "played his music too loud" theory before, were now chalking it up to the loss being hereditary, despite no one in my family past or present ever having worn hearing aids. They said I've probably been losing my hearing for my whole life and just never really noticed. And on top of that, they said I should assume I'm just going to eventually lose it all some day.

So here I am, 27, and waking up every day wondering if this is the best I'll ever hear again...Good times.

That said, it has been unbeliveably refreshing (and occasionally emotional) for me to read a number of your stories on here. Something as simple as knowing that other deafened people leave the water running too was enough to make my day! I look forward to getting to know you guys over the coming weeks and months!

ASLGAL

Insurance Co.s - argh!!
I am frustrated. This may be the thread where this may fit, if not I hope the Mods move it where it does fit better.


Apologies for intruding on the present conversation.

I have had an ear issue of my own going into about 6 weeks or so now. I first blamed it on cold and flu bugs going around and then sinus troubles.....

I have been having migraines a lot lately. I have noticed a high frequency tinnitus in my left ear and a lower (like old radio/tv tubes) sound in my right ear. My right ear feels like it is sloshy and sounds as though it is plugging/unplugging constantly and has been bleeding from the inside. When I blow my nose I have deep pain. My balance has been off but I am not experiencing vertigo. Pain deep in both ears.

Anyway, Insurance requires you go to you GP first. Did that and she said the right ear drum is spotted with blood and left is reddened. She prescribed Cipro, did say if it doesn't leave then maybe she will refer to ENT.
I advocate for people all the time and in my own case I feel like I am just sitting here frustrated.

I have looked at different reference material I have and the symptoms arent really fitting nicely into anything. Any thoughts? I have a feeling I am going to have to push for a referral.


Sorry Adam, I pressed post before I said Welcome!!

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November Gypsy

*Smiles* I just wanted to welcome you here and let you know that we do understand. As for your story...wow. I can idenify to a certain point. I started to realize I was having hearing problems when I was 19 as well, and, at 23, I am profoundly deaf in one ear and severe to profoundly deaf in the other. Why? We've decided it's Meniere's Disease, though mine is an atyical case. I think I sensed from your post that you are pretty depressed about your hearing loss. It is hard, I know. It's frightening and a huge adjustment. I hope that hanging out on here will help you to feel better and less alone. Any time you want to talk, let me know! As for leaving the water on, yup, do it all the time. *Grinning* You are not alone. It is unbelievably scary sometimes, but, you know what? We will perservere. I am still just learning that I am a whole person, just a whole person who can't hear. It's ok to be scared. *Big, big hugs*

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dogmom

hi adam,

November Gypsy was kind to post hello to you; I'll follow.... been gone all weekend but am checking back this morning and wanted to add, I have new hearing loss too. Was raised hearing with speech and language problems early on, had IEP and the whole thing. Mom was allegedly told by doct's when I was born <prematurely>that I was missing some bones in my inner ear - husband's audiologist says no. Am in my 30's, I've started having captions on some tv programs especially with lotta background noise, like dogs chewing on raw bones. I first noticed it last Summer when we were doing some dog training outside and hubby <who had moderate -severe bilateral congenital hearing loss, self-describes as deaf w/o HA's> went around other side of house cuz we were working on recalls. He took our then 1-yr. old Rottie pup w/him to distract her while I called her away from him , to get a great TREAT for coming away from him to me. He was going to yell out to let me know when he was situated with her and ready for me to call her. I never heard anything. I waited and waited and finally I just called and she came - but he's like, I was yelling that we were ready - what happened? Then we both noticed I was turning tv up louder and louder than I ever used to, to the point where HE was hearing it <w/HA's> in the kitchen, which is next door to where tv is in family room. We've also both noticed I've started saying "what?" a lot. So we went to his audi and I was found to have mild loss <know not same as what you writing about>. But I just wanted to share this with you as my "welcome".

jillio

Sorry about your frustration, but all the ENT would do at this point is tell you to take the antibiotics and call him is your symptoms don't go away. Sounds as if you have serious fluid and infection. Perhaps a burst eardrum as well, but that is a guess.

rokicki

I am late, progressively deafened, but never considered myself as "deaf" until quite recently. Since then, however, I've had some thoughts.

I think you are "deaf" if you cannot hold a conversation effectively. You may be able to hear all sorts of environmental sounds, but if you cannot communicate without great effort, I think you are essentially deaf.

Audiologists like to grade hearing by decibels and tone response, but frequently access to the "speech banana" does not correlate well with speech comprehension. Amplification does not fix recruitment; brain plasticity only develops with sufficient positive feedback.

So, are you deaf? If you have trouble understanding the cashier, or the television, or that pretty girl on the bus---I'd say, yes, you are deaf.

I always considered myself as "can't hear very well" (I never encountered the term "hard of hearing" until my first ASL class) . . . but I think if I had more properly recognized that I was, for most purposes, functionally deaf, I may have been more aggressive in seeking out assistance of various forms.

Now, with my cochlear implant, I hear better than I have in decades---really, amazingly well. Still, if asked, I will often say I am deaf, but then mention that it's been largely "fixed" by the CI. And though I am delighted with the CI, and the newfound ability to use the phone and use books on tape, comprehension in some situations (TV and parties, for two) is poor enough to give me the opportunity for self-pity. But without the CI I wouldn't even try, and as Jillian said, growth comes through challenge.

In a "Deaf" context, I'm clearly a Hearie, and probably always will be; my lip reading is far better than my ASL reception, and I seldom get an opportunity to practice what ASL I do know (and I am less for this).

So, if you have trouble understanding people, you are deaf. Better to get that out of the way and proceed from there, than to wonder if you are deaf enough to get hearing aids, to learn ASL, or whatever other opportunities are available to you. Functionally deaf is deaf, no matter how much you can hear.

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shel90

Everyone has their own definition of what it means to be deaf..I can hear some but I consider myself deaf but someone else who hears like I do may not be comfortable considering themselves deaf.

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