Lissa

It could be because you love her and you are more focused and caring for her.

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Left Ear Nucleus Freedom
Implanted-October 25th 2000
Activation-November 28th 2000

Deafness

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November Gypsy

This is true. I love the child like nothing else...except my husband, but I love him in a different way, but not any less. It's probably something to do with the fact that I know she could get really hurt if I don't protect her. Jason isn't likely to get hurt. He's tougher then an old oak tree.

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Tell me, what is it you plan to do with your one wild and precious life?

jillio

It is very true that a mother's love for her child is like no other love on this earth.

November Gypsy

Oh, but I couldn't help but love her. No one could, I'm convinced! She's the most precious little butterfly. It helps, of course, that I've always wanted to be a mommy, so I do have some of that 'maternal instinct' I suppose.

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Tell me, what is it you plan to do with your one wild and precious life?

jillio

I would say that your maternal instinct is very strong.

Beowulf

I have a neighbor who is legally blind, and she is losing her hearing. A couple months ago during a conversation I urged her to become involved in the blind/deaf community and learn signing. I was taken aback by her husband's resistance to that idea, but two months later I can see changes in both of them. I am learning tacile sign and am amazed at how complex it is to carry on a conversation. Dang, one person's condition affects everyone, but that is fine with me. I will live in interesting times, lol.

November Gypsy

I think spouses who are hearing/seeing think that joining the deaf/blind community is like waving the white flag of surrender, if you know what I mean. To them, it may seem like it's not 'fighting' anymore. They have to adjust too, though there was a time when I didn't realize that. Now I do though. Are you deaf/blind or are you just learning tacile because you want to (which is fine as well)?

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Tell me, what is it you plan to do with your one wild and precious life?

jillio

Perhaps we can help them to see that it is acceptance rather than surrender. Fighting against what cannot be changed or for a step back in time to what was is never productive. It just saps the energy that can be put toward coping.

Beowulf

A person's reluctance to change is not something I can judge since there are so many dynamics to it. Like you, it is something I can either accept or avoid, and it would be cruel to avoid those with something that would challenge you. Deaf/blind is something new to me and I will just go with the flow, lol. And btw, I am profoundly deaf.

November Gypsy

You are right of course...but I think we as humans want to think that if we just fight hard enough, if we just refuse to accept a thing...then that thing doesn't have to happen. This can be a postive behavior, of course, but it can also be, as you said, draining. It can also be heartbreaking, as I know full well. There is a very fine balance between knowing when to refuse to give up, when it is best to be a fighter, and knowing when it is best for everyone to choose to be strong enough to accept and adjust to a given situation, rather then railing againist the heavens, as it were.

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Tell me, what is it you plan to do with your one wild and precious life?

November Gypsy

Nice to meet you *Smile* Was just dianosed as profoundly deaf in one ear and severly in the other. It is cruel to avoid others because they are not 'the same' as yourself..I think that can be a hard lesson for most of us. Thank goodness, my father taught me from a very young age that all people are, in fact, people, and differences do not change their needs to be loved and accepted for who they are.

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Tell me, what is it you plan to do with your one wild and precious life?

Beowulf

Bingo! To paraphrase Obama, treat a person with kindness and respect and he/she will eventually respond likewise.
Glad to meet you, too. Smile

Missus_Philos0phyK

i was born premature at 6 months to 7 months with syphilis, i died once at the birth and the miracle happens.. THAT i was LUCKY to be alive twice. i had a severed ear damages in my left and mild damages in my right. also almost went blind in my left eye but healed quickly as i grew out of. but i dont speak well as every other HOHs out there, i considered myself deaf as i shall be good enough to understand in both choice as i couldnt hear/speak well but i can listen/talk very little well if i had plenty hours of patience.

i did always wondered if my life would be COMPLETELY different if i was hearing and everything will be infinite clear but i believe that it will not make me be who i am today. i'd known that i would have been married, having kids now and living somewhere else living the life i wish to fulfilled as a hearing person.

so i grew up in deaf programs til high school era hits, i transfered to deaf school in austin, tx - graduated and yada yada as the long timeline went by to this day. i love music, i wish i could sing them in front audience but its impossible because i would never knew how to train myself verbally. but physically with hands is too easy and i wished there would be deaf singers.

other than being singer, i have many many goals to prove my success but i cant just stay on one goals. i live in dallas, tx -- im still struggling with their closeness mind just because they never met a deaf person before. of course i dont blame them but i just wish the cultures from this community could provide a better services for US to fit in. its still tough pieces for them to puzzle us in completely.

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LDNanna

Oh, Gypsy, thanks for bringing this up! I sooo flooded my house. I started the dishwater. So sure I turned it off..... 3 fully wet rooms later.... my husband laughing....searching desperately for the wet/dry vac, old towels, wayyyy beyond mop help! It took forever to dry and I buckled some wood. As I get older, I wonder whats gonna happen when my forgettery works better than my memory? ha!

Jalestra

Oh why haven't I found you guys sooner? Reading some of these stories really helps that it's not just me, I just haven't learned how to cope. I either ignore people or pretend I hear them.

When I was 22 I started getting vicious ear infections. I ended up spending 2 years on pain medication and came out with tubes and my ears and a vicoden addiction. I thought everything was fine until I noticed some minor hearing loss, I honestly thought my ears needed cleaning. I was terrified to touch them (and still am) because of the long bout of infections. So I went to have them cleaned by my doctor but he didn't find anything causing it. He did a hearing test and noted some hearing loss. It's progressed. Three times I've woken up to quite a large amount of hearing loss. My original doctor confirmed it.

We moved and when the second significant loss of hearing happened I went to the doctor. He stuck me in a silent room with headphones and then told me I had no hearing loss. After a few months of this I gave up, no sense in wasting money for that. My family can no longer talk to me unless they get my attention and I'm facing them. I feel so rude on the phone when someone calls with a heavy accent. If they can't direct me to someone else more clear then I have to hang up.

I just wish it would end. Just finally go completely deaf. I hate this in between stage. Sometimes you hear things and sometimes you don't. No one remembers to tap your shoulder and look at you when they talk. Everyone gets tired of repeating themselves. I get tired of repeating myself. I get tired of being too loud or too low or slurring my words.I get tired of blurring voices. I get tired of folks who think you're either hearing or deaf, as if there's nothing in-between. It sucks to have people say "I told you that" and you can't exactly say "Oh? That day? I was pretending I heard you and just nodded my head".

I have gotten better at reading lips, though trying to listen and read lips kind of gives me a headache..but that could just be me concentrating too hard. To be honest, I'm fairly ok with losing my hearing. Only every once in a while does it get me down and only a bit. It's really dealing with others dealing with me that causes me all the trouble. THEY get me down a lot. How will my life end up when my hearing is gone if they don't face it now?

November Gypsy

*Laughs and hugs Nan* Wonderful. I'm not the only one! I love that your husband laughs, I'm lucky that way too. I'm under the impression that my 'forgettery' (wonderful word) has always worked better then my memory! Do you know, I'm seriously thinking of legally changing my name to Gypsy?

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Tell me, what is it you plan to do with your one wild and precious life?

November Gypsy

*Big hug* Sweetheart, I understand. I really, entirely do. I had mysterious ear infections (which my ENT insists has nothing to do with the fact that I am now severly/profoundly hoh...right). I have been diagnosed with Meinere's and am hanging on to little bits of sound by a thread. I totally get what you mean when you say you wish you could go completely deaf. I feel that way quite a lot. I hate talking on the phone, I am getting good a lipreading, but like you, I often have to pretend. I will say this though: I am waking up less in dread of it now. This has been going on for about three-four years, and I am, finally, learning how to live with it a little. It's hard. I feel so left out and alone sometimes, but you know what? We aren't alone. I wish I could really give you a hug. You pm any time you want to talk. My mother feels that I'm not 'trying' (how you 'try' not to go deaf, I don't know) and so I get that too. You know what? They are going to have adjust...it's hard for them too, though, because they feel that they should be able to do something about it. It's hard for them to accept that they can't. I think you will find comfort here. They are nice people on here and they have lots of experience. I can tell you from the bottom of my heart that it is possible to have a life, and a good one, while you are hoh/deaf. I am still just learning this but I know it to be true. I hope I helped a little!

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Tell me, what is it you plan to do with your one wild and precious life?

dogmom

Hi Jalestra. November Gypsy and all!! I want to welcome Jalestra, who I don't know that I saw before, on, and give ! My newly diagnosed loss, while not as severe as that of your guys, is also still a change for me. I think of it as an opportunity <maybe sounds "silly" to you, take it as you wish>
But I can relate to frustration of not understanding or being understood cuz I have LD, and for me that can mean <among many things> that just because I hear something does not mean I understand it. I have oral processing problems, problems with sequence, spatial orientation. Not same as hoh but has a bit of same effect. In relation to LD, my mom doesn't believe it and thinks not I'm not trying hard enough.
Just trying to write that I am here for people to share with -

peace

November Gypsy

Ah mothers. I hope to goodness I somehow manage to be completely unlike mine. Anyway, Dogmom, of course you aren't silly! You are right...in the face of adversity, we often have opportunities to grow and become better people...as cheesy as that may sound, I firmly believe it. I have LD too (maybe you remember) and so can relate on both levels. And just because your hearing loss isn't as 'bad' doesn't mean it isn't a challange. We love you!

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Tell me, what is it you plan to do with your one wild and precious life?

dogmom

November Gypsy! How are you this morning? Yes, I remembered that you have LD too and so we have a couple of things in common. I think this is one reason why the forums are so important!
mothers, that's such an interesting relationship, in the twists and turns!

November Gypsy

I am a little depressed, if I can be completely honest. Am reallllyyyy struggling with some issues today. But, I'll pull through because I have always done so. *Smiles* It's really nice to meet someone who does understand about the LD, I have to tell you. *Sighs* And the thing that scares me the most about motherhood is that I am one, and I am terrified I'll wake up one morning and realize I'm exactly like my mother. I love her, but I'd put my baby in foster care first, and you have no idea how impossible that would be for me to do.

I don't know about you, but I think having an LD has actually helped me adjust to being hoh faster then I would have otherwise done. What do you think on that issue?

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Tell me, what is it you plan to do with your one wild and precious life?

jillio

November Gypsy and Dogmom:
I would say that adjusting to your LD no doubt made it easier for you to adjust to your deafness. You already had the basic skills for accepting and dealing with adversity. You simply had to apply them to another situation.

The strongest, most amazing people I know are those that have put forth the effort to accept and overcome the obstacles that were put in their path. That effort, indeed, allows you to grow overall as a person, and to see life with a unique perspective of of tolerance and empathy and understanding. As a mother, what better example can you provide your child than the person her mother is as a result?

Jalestra:

I want to welcome you to our little group here. Stick around. I'm sure you will find the support and the suggestions that will make your struggles easier.

Jalestra

Thank you all so much for the warm welcome. It's a help simply knowing that I'm not the only one with these feelings. I say "Jeez I wish I was deaf already" and folks look at me like I'm nuts. I try to enjoy hearing what I can while I can, because I know it's not going to be forever, but sometimes it's just so frustrating.

My mother is the only one supportive, but that's kind of because it gets her attention. "Your daughter's going deaf? You poor thing!" I'll take what I can get.

Gypsy, I know I CAN have a good life, but this contentedness with my situation will be severely put to the test the day I wake up hearing nothing. I don't know if I can deal with it myself while taking care of all the adults who have refused to accept the situation. It will be hard enough on the children and myself. In a sense, I'm lucky in that it's progressive because I don't have to deal with it all at once, I can adjust in increments as needed, but everyone else must adjust as well.

Dogmom, I sure relate. My first significant loss of hearing it was my husband with the "try harder" . We finally ended up having it out and I told him, "chop off a finger, if it doesn't grow back then you aren't 'trying hard enough'". He still sees it as "giving up", but jeez, it's not like you can just fix it. If you could this group wouldn't exist. At least he's shut up about it.

I think one of my biggest issues is the expense. Until I'm diagnosed as hearing impaired, I'm on my own. But the diagnosis costs money we just don't have. Not to mention I really don't want to waste money on yet another doctor that blows me off when I try to explain about how my hearing is affected...or defective. I'm fixing to move to Houston in a couple of months, so if any of you know anything about the area and can direct me to a GOOD doctor, I'm willing to undergo the expense. I just don't like the idea of jumping from doctor to doctor until I find one who listens. I trust my first doctor's diagnosis. Even when he was worried I'd sue him he still told me. It's really not his fault, but you know how sue happy people are sometimes.

It really bothers me how we're the deaf/HoH ones and they are the ones who won't listen.

jillio

Re: "the adults that refuse to accept the situation." Please keep in mind that it is not your job to take care of them. They need to learn to take care of themselves. Your job is to take care of you.

Bottesini

For Jalestra, after you are diagnosed you are on your own too. Unless you are looking for Cochlear implant.

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It's a joke Nathan!

Jalestra

Not looking for anything requiring surgery. LOL I've been put in contact with a couple of groups in this area, but until you are diagnosed they don't want anything to do with you. I can't get them to understand I need HELP getting diagnosed! Finding a good doctor and such. The most help I have gotten is "you need to see an audiologist, not an ear doctor". Which was great, because I was seeing an ear doctor, but no suggestions of a good audiologist.

Jillio, I know they are their own responsibility, but I know what's going to happen. I'm going to lose my hearing completely and they are all going to be scrambling to catch up. I just don't know how my reaction will be. It's one thing to get used to HoH and face the fact you are going deaf, but it will probably be quite another to BE deaf. I hope I can wake up and say "I knew this was coming and it's just another day with a new snafu", but I don't know. I'm doubting it'll be that simple. How do I know they will be there to help with the children and the final adjustment if I can't even get them to accept and adjust to this? I just don't think it'll be fair of them to be suddenly adjusting when I, the person most affected, has to shore them up so they can help me. I have kids, I wouldn't feel comfortable internally processing unless I knew someone was there watching over them. I don't even know what's going to happen. Will I wake up deaf? Will I be sitting on the phone and suddenly be deaf? On one hand I can see it easily being like losing a dear friend and needing some time to grieve, but on the other I've been adjusting to hearing loss for 3 years, so maybe it's just going to be "ah, there it is. Time for plan A!". Of course none of you guys can tell me that, but not knowing means I'll need my family more. If it wasn't for the children I'd let the adults be, but I have to prepare for the kids too. At least I feel I do.

I do have a question for other HoH folk, do you guys ever "reboot"? Something that's been happening since my first significant hearing loss, sometimes the noises will overwhelm me. Too much noise conflicting and it's like my brain says "I GIVE UP! WE'RE SHUTTING DOWN!". I zone out for a second and am completely deaf for a short time (about 15 minutes or so). And it's not necessarily loud noises, just conflicting noises. I call it rebooting, it kind of reminds me of a messed up computer I once had LOL

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Life is not measured by the heights to which you climb, but by the beauty of your passage.

November Gypsy

Yes, 'rebooting' happens to me all the time sweetie. I'd never thought of calling it that, but that's a perfect name for it! *High five to you* I wish with all my heart I had some good advice to give you. All I can say is that I know it isn't easy, because I'm right there with you, but I know also that there comes a point where you (or at leat I ) feel calm and peaceful about it. It's like my soul knows that I can't go on stressing, so I calm down. I understand your predicament with your family. Kids are tougher then they appear, generally. I think if you just tell them the facts, admit that it's scary, but that it doesn't mean life isn't going to be fun or good anymore, that they will adjust better then some adults I've seen. My family isn't too eager to adjust either. I keep being told that I need to stop thinking negatively...but I'm not! I'm just trying to be real. I. Am. Going. Deaf. That is a fact of my life. It's hard sometimes, and others it seems like it has always been...but either way it's the way it is. I have it lucky in that my husband married me knowing that I was losing my hearing and my baby has always had me be an hoh mother. She doesn't care, she still loves me, and I'm willing to be that the kids will still love you just as much as ever. My family on my husband side has been great, and I've been really blessed that way. (By the way, I started going deaf when I was 19, and now am tettering on the edge at 23).

I want to assure you that you can rant here. You will get support. You will find that others know exactly what you mean. You are not alone sweetheart. Not at all. *Smile and hug*

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Tell me, what is it you plan to do with your one wild and precious life?

jillio

I don't mean to sound harsh...truly I don't...but the fact is that you will be going deaf whether your friends and famly understand, empathize, and support you or not. Take care of yourself. Do what you need to do to accept and adjust. Your example will provide the guide that they will follow.

November Gypsy

CBE's post on considering herself deaf set me thinking: at what point is one supposed to consider themselves deaf? When they can't hear anything at all anymore, or before that? I can't understand the spoken word anymore, but I can hear very loud noises. Does that mean I'm still HOH...or what? *Looking confused*

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Tell me, what is it you plan to do with your one wild and precious life?

jillio

That is really a personal decision. There are those that consider themselves to be deaf with a moderate loss, and there are also those with a profound loss who do not consider themselves to be deaf. Particularly with those who have lost their hearing at a later time, identifying themselves as deaf rather than HOH creates a feeling of hopelessness for them. Some, until they have adjusted psychologically to the changes in their life, feel that to identify themselves as "deaf" accentuates the fact that they are no longer hearing, and therefore, dratically different from who they used to be, while HOH means that they still have some hearing, and therefore, the difference is less.