green427

Sounds like a really cool guy. You are lucky to have him.

This might help: When I lost my hearing at a young age, I had a wonderful teacher that helped me to learn how to read lips. She would fingerspell the first letter of every word right next to her mouth whenever she talked, and I picked up very quickly. So did all my other classmates.

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Warning: Anything I post may not make any sense. All advice is for entertainment value only. Sarcasm might be present. Interpret at your own risk.

Deafness

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TubeTJ

Good afternoon.............not like I have been here long, on this forum, but I JUST found this thread. From what I am reading, wow, I thought I was the only one feeling these things. Not special, or anything like it, but just how my situation worked out.

I will tell you how I became deaf, I truly apologize if I do not say things correctly, do not capitalize the correct words, seem to be an Audist (if I do ???), any of it. I am still learning.

Ok..........here goes. Not real warm and fuzzy with this, but ok.

Where to start ? I worked in heavy industry, got my degree in hydraulics. I was the shop foreman, ran the service crew for all of the NW, did all the scheduling. I had the "go to" crew, the really ugly jobs, yeah, we did them. Long hours in extreme weather, any place, any time, you break it, I would have a crew onsite and fix it. We did all forms of hydraulics, both mobile and stationary, some agricultural, logging was huge, as was mining.

Which bring me to the deafness, MSHA had red tagged a piece of mining equipment from one of the hydro-static drives not having proper tension on the deadman brake. The brake is designed that when you lose pressure or if the operator lets go of the controls, the machine stops. This is done with a HUGE thick beveled washer. I had a 10 ton (20,000lb) three jaw hydraulic gear puller pushing down on the washer housing as I removed the 16" dia snap ring that held it in place. I had my face over the gear puller when one of the legs snapped in two. I was struck in the face with the gear puller, brake, and just about everything else. When I came too I was in a pool of blood. I could feel the bones in my face though all the soft tissue damage. I went to the hospital, they sewed me up, did some rather "rudimentary" tests, I guess they did anyway. Pretty much they just dealt with the lacerations and facial damage. (leaving allot of boring details out)

Ok, Fast forward about a week, I am dizzy, not feeling well, vision is off. Dr tells me I had a concussion from the impact............mmmmm.....ok. A couple more weeks, it is worse. A few other symptoms had jumped on the band wagon also.

Then the vertigo hit. Actually, it had been there all the time I think, but I had my first severe attack.

I just deleted like four paragraphs of unnecessary information.

7-8 weeks after this happened my hearing was gone........ profound deaf, bilateral, period.

I had sustain a severe closed head traumatic brain injury, severe vestibular concussion, spinal damage and lost a percentage of vision in my right eye, the impact side. It took well over a year for them to find all of this.

So that is how I became deaf. But the vertigo removed me from the world. I had worked my entire life, been in more than a few bar room brawls, ya know, livin' the life. I could master this. So I pushed it, the harder I pushed, the more it proved me wrong, I was not in control. The facial scarring is an issue for some, I know. But the truth is, my world sort of evaporated. Friends ? Huh....yeah, well, what friends ? I know they did not get it, but I was alone in a crowded room more so than when I was actually ALONE. I have become reclusive. I do not wish to be at social functions, the pub, really, much of any of it. This happened a little ove five years ago. Sorta like I am living one life then..........I'm exactly the same person, but my life, my world is from another planet.

I came on here, this site, to try and break that very cycle of seclusion. I do not know the right words, I suck at ASL, I have my Audio dog who has kept me somewhat sane.

I have just started to write and be me. The me I am now, not who I was then. I know that person, that world is gone. Please recognize, not all of this is do to deafness. The vertigo is my worst enemy. I try to have hobbies/life/friends............but it does not work out really. Reading here helps me understand more, if that make sense.

That's it I guess...........If I can answer questions I will. I hope what I wrote is ok and in theme with this thread.

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Profoundly deaf, bilateral.

green427

Ouch.....sorry to hear about that. Sounds very painful.

Thanks for sharing this story. We have another member here that suffered a head injury and lost her hearing for a few years.

I am not an expert at closed head injuries, so forgive me if this is a dumb question: You say the hearing loss came after the accident, is it caused by the brain swelling and cutting off blood flow to certain areas?

In keeping with the theme of this thread: Even though many members here tout that learning ASL is one of the best things...and I agree, however, I am a strong advocate for lipreading. I became deaf at 4 and made it to 18 on lipreading and limited hearing only. I was the only deaf kid in all the schools I went to until I went to college. There were no services available outside of institutions for kids like me back in the '70s. Learning how to lipread takes some practice, and comes in handy when you are the only deaf person around.

Hope you will make progress with the vertigo.

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Warning: Anything I post may not make any sense. All advice is for entertainment value only. Sarcasm might be present. Interpret at your own risk.

TubeTJ

@ Green427,

The hearing loss is in association with the TBI, the vestibular damage/concussion or a combination of both. It is fixed and stable, sorta makes it sound like it is okay, but that just means that it will not change from what it is.

I have worked on my lip reading and my speaking, which seems somewhat taboo in the deaf culture. I am just looking for methods to communicate. I do believe if there were a larger deaf culture in this area I would be able to hone my skills more. But from what I have found is that people choose to not recognize the choices they make in communicating with me effect me in my ability to communicate with them. Even in the medical industry. Hence, the lip reading, conversation conjecture, minimal interaction.

I am a fledgling within this world, still sorting it all out and really working on where I fit.

Not certain if this answered your question ?

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Profoundly deaf, bilateral.

Angel1989

Hi Tube T3...I lost all of my hearing overnight last May. I was really sick with a serious blood infection, brain swelling etc. I was in ICU for 10 days and the hospital for 30 days. It was a very close call, but I made it. I did loose all of my hearing tho. I can totally relate being thrown into the world of deafness, with no warning. I like you am struggling with communication. Lipreading is ok for a short period then my brain goes crazy. I also Have this horrific noise that sounds like an air compressor a foot from my head and it is there 24/7. Being deaf for me is not peace and quiet its brutal!!! Good luck to you!!!!

TubeTJ

Good morning Angle1989,

Lip reading works fairly well for me, ASL can trigger vertigo in me. I wish I had a stronger deaf culture around here to interact with.

I can do ASL if I go horribly slow. I know this would frustrate anyone versed in it.

Thank you for your reply and best wishes.

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Profoundly deaf, bilateral.

green427

If it makes you feel any better, there are a lot of deaf people like myself that have never 'belonged' to any kind of culture....not deaf enough to be part of the deaf culture, not hearing enough for the hearing culture.

I've lived and worked in the hearing world without feeling like I was part of it (still don't to this day). College at RIT was the best time I've had socially, now it is back to the daily hearing life. Once every two months I get together with my old college buddies and go biking. All of us live and work in the hearing world and go through the same old crap.

Sounds depressing, but it is the truth: No matter where you live, being deaf in the hearing world is lonely at times. I have suffered from depression most of my life, but have found ways to push it back and try to enjoy the things I do. If you have hobbies, concentrate on them as much as you can.

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Warning: Anything I post may not make any sense. All advice is for entertainment value only. Sarcasm might be present. Interpret at your own risk.

Frisky Feline

I am sorry most of you who feel so lonely or depressed. try to think positive and do your best to learn ASL and search for someone who are the same experiences as you do.

i dont have your experiences. but i really wish that most of you who learn ASL with no trouble because you won't feel lonely when you hang out with other ASL users, like me. I always thought that anyone who can speak fine would have good life but im wrong about it.

try to think positive and search for your own interest with someone who are the similiar experiences as you do.

good luck.

TubeTJ

Thank you Green427,

I am truly working on this life. My life, now. For too long I was looking back, not forward. I truly kept trying to get back what was gone, done, destroyed.

This a journey for me, I have a rudimentary map, but it is I that must find my way. The hobbies help. My audio dog, Zeus, he is a life saver. Always there. ALWAYS. Even on my bad days, he is there. That will either make sense or it will not.

I completely understand your feeling of not being in either world. I profound deaf, but we seem to lack deaf culture in these parts. I feel adrift at times. Not in a "pity party" sort of way, but just not quite sure what to pursue and what not too.

The circles in which my social agenda were base have evaporated. The downside is that I am still looking for the way fill in the gaps. I do allot of stuff alone. I'm ok with that.

Being on here helps. Not that I was ever so naive as to believe I was the only one dealing with a transition in their life, but reading here, the daily life, challenges, triumphs of everyone is good, very good.

Thank you for your response.

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Profoundly deaf, bilateral.

MintyOreo

X2!

I've always felt, ever since I can remember, as being "culture-less", if you will. As a young child, I had my cultural identity stripped from me, and another one forced upon me that didn't fit me at all. (Not referring to hearing vs. deaf; this is different. LONG STORY...) I was left with not much to live on. I am now finally starting to figure out who I am, who I'm supposed to be, and where I belong in this world. It's hard, it's tough, it's agonizing.

I live surrounded by the hearing world - but I've never felt like I'm a part of it. I feel trapped in a world where I don't fit, if that makes any sense at all... I blame my sense of being "non-cultural", if you will, on the people who did not encourage me as a child and now to be who I really am.

I have more thoughts on this, but I gotta jet now...

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A FEW of my favorite quotes:

“Why fit in when you were born to stand out?” ~ Dr. Seuss

“The past does not have to be your prison. You have a voice in your destiny. You have a say in your life. You have a choice in the path you take.” ~ Max Lucado

“Knowing that we can be loved exactly as we are gives us all the best opportunity for growing into the healthiest of people.” ~ Fred Rogers

“Even though you may not understand how God works, you know he does.” ~ Max Lucado

ThatConnie

Hi Im Connie and at around 50 I started having tinnitus and background sound difficulty. Buldging eardrums and had tubes put in. That helped with ackward background sounds and over ampt background sounds. Its 24/7 but Over the last seven years The tinnitus has gotten 4 X stronger and Im loosing hearing in the range of womens voices. They say I am at boarderline for hearing aids. TV movies is a problem. I can hear the background music but not the voices. grrrrrrr...... All my friends use cell phones and now I am to. That doesn't help. If I drink or eat anything ice cold. the tinnitus goes even higher. Plus late at night both ears are a thousand crickets and tones. Sometimes roars. My question is - it this situation does it ever stop??? How is a hearing aid going to help with tinnitus--Im sure its from loud music and wearing headsets working in Communications field all my life....This last year my quality of hearing has really changed..LMK

veneficus

Hiya, my name is Elodie, I live in the Uk. I have OI and have gradually been going deaf throughout my life. It has been a journey but I'm here now. Still learning ASL but it's coming good. Talking was always a pain in the a**, always hated phones, but just use text now. Miss my music but use the Tube to learn to sign my favourites. You know the ones, Bon Jovi, Bryan Adams...C Lo Green! That is cool! lol! I am 60 plus now and starting to live again. I don't have to face to face people who are a pain anymore. Which is great! Love your site Will be here often. Kind regards El

TubeTJ

A thought on this...............

Certain iPods can be hacked and the bass boost enhanced, use Skull Candy, (full metal jackets, I think), they can handle the boost, then watching the TUBE with lyrics can work.

I too miss music............allot

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Profoundly deaf, bilateral.

Bottesini

I missed this. Osteogenisis imperfecta? And wouldn't it be more useful for you to learn BSL??

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Satine

Hi. My hearing loss has been going on for about 10 years and is hereditary. I have Bilateral Hearing loss with extreme Tinnitus. Seems my hearing loss has accelerated in the last 8 months.

Been without a job going on 4 years. For 3 years off and on I would go to interviews be upfront with my hearing loss and still had great difficulty in hearing. So heading down the disability route. I would rather work but going on 4 years without a job I had to start disability. Even tho it's not a guarantee at least it gives me something else to focus on. Worse part is I have no insurance and have already used the SSI exam. So, I need to figure out how to get at least 2 more hearing tests done during the wait period to go in front of the Judge.

The ringing keeps me up and is louder then ever. I have what sounds like in the forefront the long beep that is made for weather warnings. Followed by the sounds of crickets with what also sounds like background machinery noise. I rather not hear anything then all this going on lol

Do well unless the routine is not one I am used too. For example I went to Panera's for the 1st time. Thought I did good by looking at the menu beforehand. Armed with my new menu skills I walked right up to place my order. One thing I did not know was they ask what bread you want. I thought that was covered with the sandwich. No they also add for the soup. Took her 5 times saying it before I understood. So translate this to an interview and yeah most don't have the patience. Most think you dumb, high or drunk.

Even my family has lost some patience. I do plan on learning ASl just the matter of finding where to go and be able to have the gas to do it. Sure I can look it up but I rather learn in a classroom setting. To make sure I know what I am learning. Would like my family to learn as well.

Glad this Forum is here. Been very interesting to read.

drphil

Satine's observation's on the last line- is correct. The wide variance here of how different persons' reaction to being either "some hearing loss to the ultimate-deafness".
I still recall the first Canadian Hearing Society/Toronto -Hearing Help/Coping class back 20 years ago. Be assertive/don't bluff about how much you "hear". Nobody can "read your mind" on how you "understand".

Aside: went from Profound loss category -both ears- in the 70s. to deafness -1992 Right ear to becoming bilateral DEAF-December 20, 2006.

Does this forum help one when reading? Much to consider!
Each of us of has "traveled much different ways" in dealing with our hearing loss.

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Get Real:Implanted Sunnybrook/Toronto -Advanced Bionics-Harmony activated Aug/07

Satine

drphil- Yes the reactions are so different. People are either very tolerant or not. We all have degrees of loss, some have it more profound then others. In the end we are all here for one common reason and it all deals with ears lol I agree it's better to ask 5 times then to act like you hear when it's clear you did not.

KristinaB

I had a doctor this morning (the guy who did hubby's heart catheterization) offer to shave just so I could read his lips. I just told him to write out all the info and he did. HE asked if I was open to some constructive criticism and I told him yes. He mentioned to both hubby and I that I was pronouncing some words wrong and my speech was not real clear. That's when I mentioned that I was total deaf. Needless to say, he was left speechless after that.

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Taking life one day at a time.

ReeniePHOH

Wow, this is right up my alley! I've been struggling to find someone/somewhere to help me deal with my profound deafness. I'm uninsured & need new hearing aids, but I can't afford them. I may even be eligable for implants. In the meantime, i'm trying to embrace the HOH deaf community & try to make friends that know what i'm going thru & can be a support for me as I would for them in return. I need to relearn ASL, is there anyone willing to tutor me?

caz12

i went profoundly deaf within a weeks or so some years back and was sent rehabilitaion.it left me with other problems aswell as can tell by my writing.
i found and find it difficult going from hearing world to deaf cos my thinking is still in hearing world,e.g metaphor,i find deaf world bsl blunt which needs to be,hearing world got many words with basic same meaning, deaf use maybe one sign which mean many things.
it difficult cos deaf and hearing world i find hard and visa versa,but i think america got more social networks than uk

MJ

Hi all, I'm new here and wanted to introduce myself. I feel a little weird here because I still operate well in the hearing world but I don't know for how much longer I can keep that up. I've had bilateral high frequency loss since my teens and it has been progressing to lower frequencies (and in all likelihood will continue to progress since they can't give me any reason for it beyond the vague "genetics"). I've had hearing aids for seven years now but I only wear them when I think I'm going to need them (restaurants, movies, meetings, bars, etc.). They don't work that well anymore- probably because I've lost a lot in the 1000-2000hz range since they were programmed. I'm not sure how to go about getting them re-programmed- can any old audiologist do that or do I have to go back to where I got them or does this mean I need to get new hearing aids?

Anyway, I'm glad to have stumbled across this thread. It's nice to know that I'm not the only one dealing with these issues.

Frisky Feline

Welcome. maybe it is less weird for you if you post in the introducation section. This thread is made by the former Original poster pretty good.

So welcome!

Safire

I am losing my hearing gradually since...welll..go look at my blog in Testimony. but the hardest is losing my singing and speech.

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The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart.
~Helen Keller

Marie579

Quick question, although I'm sure it's covered in your blogs I wanna know right now cause I'm so patient ... Do you have recordings of singing? Riding to my appointment yesterday I heard a song on the radio I know I'm going to miss so much!!!!! I turned it up even though I knew it'd hurt later!

KristinaB

Just thought I would mention - I am total deaf. No hearing what-so-ever. Not a candidate for HA's or CI's. Have been for 6 years now. Was hoh for 42 years before. I still sing and I have been told I can still stay on key. In fact, my family tells me my pronunciation of words is clearer in my singing than in my speaking.

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Taking life one day at a time.

Marie579

I've already posted in here, but I guess I've been avoiding telling my story. I found some inspiring stories on this thread, although if I start I'm afraid I'll begin with way too much detail and who wants that, right? I'm not quite sure when mine started, my guess is about ten years ago, but it could be further back as the injury that made it start was further back, I don't know. I'm kind of in denial about that. It's the detail I'd like to wait on. But the way I found out is almost as traumatic.
I thought I had allergies for years that were causing the pain, until about two years ago. Then right after finding out my husband was having an affair at work, I went into have my ears tested. We were separated and I started googling the way my ears were feeling. I came upon a term "hyperacusis", but kept going back to “recruitment”. I kept thinking to myself “No, it’s probably just hyperacusis. I even told my neurologist my thoughts about the hyperacusis. I didn’t say anything when I made the appointment though, I just went in and had the tests. The person giving the test was awesome and so helpful to my pain and limited income. I went into the patient room. The doctor walked in and said, “You have recruitment hearing loss, the damage is permanent. There is nothing you can do.” He turned around and walked out. It’s not so much that it was bad news, I won’t go into those reasons. But it was that I felt alone, no husband, no one.
Now that my husband and I are working things through we understand how my going deaf played its role, don’t get me wrong, it’s completely his fault! But, life happens and you move on. I also saw how it was affecting my kids. I wasn’t communicating well with them, this has improved so much! Life has improved so much learning what was happening to me, though at the same time it’s so scary having that “cut off” feeling from everything you know so quickly.
Due to my narcolepsy, I already have cataplexy, paralysis and sleeping issues. Now I have to deal with all this together. Once I was vibrant, outgoing and strong. Now I can be withdrawn, and staying at home suits me fine. I found this site because I wanted someone to communicate with that had inkling of what I was going through without the "Oh you poor dear" stuff. And finding this site was like a goldmine, because people here have way more than an inkling!! Sorry, this is long, but I tried and it would have been longer if I hadn’t tried.
One more thing, I'm not sure how it's affecting me as I've just started looking into this aspect of it. But apparently, trauma to the brain can cause your thought process to be messed up. Where I think I'm functioning as I always have, somewhere in there I got turned around. And I don't know when I'm saying the wrong things or behaving in an unacceptable social manner. The more I read the more upset I get and want to just give up. I'm trying not to. The stupid decisions you make in your youth really affect you the rest of your life!!!

AJWSmith

Welcome to AllDeaf Marie579

Thanks for sharing your story - another in a chain of moving stories that this thread contains.

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Born deaf. Profound hearing loss in both ears (90-105dB). Wears Oticon Spirit Zest C SP (Chili)
You can also find me on twitter as @AJWSmith and on Google+ as AJW Smith

Marie579

Thank you so much!

Marie579

Thank you so much! (And I cried through most the stories!)
Of course it posted twice. Crazy phone!

ambrosia

Wow, I really wish I had come to this thread first!

Hiya!! My name is Amber, I'm 37 and I have otosclerosis and cohclear otosclerosis. I have it worse than most people get, it's hereditary and I started losing my hearing even before my mother. I realized when I was 20 that I had lost hearing in my right ear. I had gone sky diving and it felt like someone stuck an ice pick in my ear during the free fall. So for the next years after that I thought that was the cause. But then I started losing it my left ear after I had my children. Then I was diagnosed with otosclerosis and was told that my realizing I couldn't hear out of my left ear until after I went sky diving was just coincidence, that I probably already had the loss just hadn't noticed it yet.

But anyway......... my journey into the abyss, just kidding it's not all that bad. My loss, right after my children, was fairly rapid over a year, but then slowed down for awhile. I got hearing aids, but not before I missed most of my daughters, the youngest, first words. That was rather heart wrenching.

In the last year I've had another plunge in my hearing so my hearing aids are not working nearly as well for me anymore. My left ear is now profound to no response and my right, my "good ear" is now at profound loss. The last year I think has been the hardest for me, wondering if it is all going to go you know? Over the course of the years I handled the loss very well actually. I've joked about it and have had funny tshirts, I had one that said Blah Blah Blah I can't hear you. But lately, with the additional loss I have gotten very down, and it isn't something I've really talked about to anyone until fairly recently. And only with one person.
So lets back up a sec, I left my husband in March, but I've been ready to do that since April of 2011, it just took me that long to do it. But in the meantime I started texting/talking to one of my coworker and he really helped me through some of what I was going through and build up my courage. I developed quite the bond with the guy, but during all this I was also losing more hearing again. I started feeling really insecure, and I've let that bleed all over the poor guy. I think my insecurity is chasing the guy off more than mydeafness. I finally had to try to explain why I was being so nuerotic. I feel broken sometimes, and I'm very much afraid that men might find it too hard to be with me. That I'm going to be alone forever. But I'm not sure if this is just a result of how much exaggerated the feeling of being alone has been for me lately. It is such a strange feeling to have my voice be the only thing I can actually hear anymore, and even then it sounds so very far away. Like there's nothing and nobody else in the world but me. I know that's now how it is, I think eventually I reconcile myself to this new loss, but right now it's just too new.
But even from the beginning of losing my hearing I have found that one of the worst feelings about hearing loss has been crowds. Is it just me or the more people that around the more alone you feel?

And music, that is a super bummer. I used to be HUGE on karaoke in my early 20's!! But I see some hope!! I'm getting some new aids soon, so I'm hoping I'm going to perk up!! crossing my fingers that the new aids will not disappoint!!