Adjustment to late onset deafness

[AJWSmith]

Does grief follow set stages?

Ya know I thought I was at stage 7... but this week I feel like I've really only just hit stage 4 or maybe I back tracked?

Struggling...

Research and experience have told us that the stages of grief are not fixed or come in the same order for people. They're more like a rough map telling people what the journey is like. Some research psychologists dispute the whole idea of fixed successive stages of grief.

Whatever the truth is, it's undeniable that grieving is a journey or a process. Sometimes it is like a spiral, you get to the end and then find you need to go through the whole process again but at a different level. Sometimes it's like sliding back in order to re-learn the lessons at a deeper level or from a different angle. It's my conviction that our emotions have a wisdom that can be hidden from our conscious mind or willpower. Don't force your feelings down a narrow path, but allow them to wander and pay loving attention to what they're telling you. For example they may be telling you to rest more. Or challenging you to have the courage to embrace the pain/loss. Or to make some changes. Or it may expose a weakness or gap in your life that you have never really examined. Or they may reveal as aspect of your personality that you've not properly looked at before (often this is an artistic/creative part).

Grief is a very messy and upsetting process, but at the end you will have grown as a person at the same time as losing something.

 

[AJWSmith]

Odyssey of Hearing Loss: Tales of Triumph by Michael A. Harvey

I want to recommend a book I read recently to late-deafened or deaf/HOH people facing increasing hearing loss.

It's called Odyssey of Hearing Loss: Tales of Triumph by Michael A. Harvey, first published in 1998 ([ame="http://www.amazon.com/Odyssey-Hearing-Loss-Tales-Triumph/dp/1581210078"]Amazon link[/ame])

Michael Harvey is a (hearing) clinical psychologist but with extensive experience of Deaf/deaf/HOH people (he can communicate in ASL as well as English). He worked at Gallaudet for a while.

The book is a case study of ten different people coping with their hearing loss (or in one case a Deaf lady coping with an insensitive hearing boss). Each person reacts in a very different way and this is helpful as it makes you see that there isn't one "correct" way to handle hearing loss. There are many different ways of losing hearing, how old you are when you lose it, the degree of hearing loss and how that impacts on the rest of that person's life. These 10 people cover a wide variety so it's likely you'll find one that is similar to yourself.

It's quite an in-depth book. Not one you can read quickly. He takes a very psychological approach which I find interesting. It's not a 10 tips on how to cope with hearing loss book like many self-help books. Rather it's a deep look at human beings and how they cope with change and how a psychotherapist trys to help. If you don't like introspection, then you may not enjoy this book. But for the rest of you, check out the reviews on the internet. If you think it's your cup of tea, then get a copy.

It's not an easy book to get hold of. In the UK there were no new copies but I sourced a secondhand copy from AbeBooks.

 

[mizwytch]

i lost my hearing only a couple of months ago and have been finding it very very difficult to adjust. i didnt realise how much i relied on being able to hear until i couldnt hear so well! i have a moderate-severe hearing loss and can't wear hearing aids. it's affecting every aspect of my life and i'm finding it hard to adjust!

Yep...it can be a real bitch adjusting to deafness after years of having hearing. I found the best way to deal with it is to just do what it takes to learn everything one can about Deaf Culture and take ASL classes, lip reading training, speech therapy if required, and anything else one can find and do to help the adjustment. The busier you stay the less time you have to sit and think about all the things you can't do because of the hearing loss. And , yes, patience is a requirement. People will get frustrated with you and you will get frustrated with them. It's a hell of an adjustment...but it can be done. Always look at the positives...that really helps.

 

[mizwytch]

Hey MizWitch -- thanks for the reply... what you've experienced appears to be exactly what I'm going through.

My friends are either sympathetic or horrified depending on the degree that it impacts them.

For me, there's a sense of peace that comes with acceptance. I'm not chasing the doctors anymore since all they do is exacerbate my sense of frustration and why should I continuously put myself through that?

I do know sign. My PSE is very strong, my ASL is so-so and I've been spending several nights a week in social groups strengthening the latter. I learned sign almost 30 years ago from folks that were in their 60's then so my signs are pretty damn old which tickles the younger signers. (They love correcting me!) (See also: Irony, my new favorite sign!)

Mentally, I'm in a better place now. Day-to-day life can be a real challenge, like getting what I want in a restaurant, but that's ok. There's advantages too, so it all works out in the end.

I deeply appreciate all the support and commentary that I read here. (Not just to me, but in general.) I think some of you have no idea how significant of an impact, and how grateful people are, for your words of encouragement.

Thank you.

You are quite welcome wyntr. I know what you mean about learning signing from people much older than you. My ASL teacher is in her 80s and some of her signs are apparently "out of date" when compared to the signs in the book and the website I use to learn and practice ASL during the rest of the week. LOL However, she is open to learning new signs as well. She has been signing since she was 7 years old...from back in the 30s...so I would imagine some signs have changed a lot since then and new ones come along.

I am glad you are finding a peace about being deaf now. I have found some peace with many aspects and having problems with others myself.

My biggest concern recently is that my hubby is quite ill...big reason I haven't been around on AllDeaf lately...or even on my computer much. He has to go back to the hospital today for another blood transfusion. He keeps losing blood and doctors haven't seemed to make much of an effort to find out the why and how. He stays weak, tired, and short of breath. Just walking to the bathroom wears him out...and he also has 2 aneurisms in his brain...crammed right together. So if one ruptured the other one would too.

I recently realized that I had subconsciously been preparing myself to be a widow...and the realization just shocked and terrified me. I am having real problems dealing with the real possibility of losing him and facing life alone and deaf.

 

[AJWSmith]

My biggest concern recently is that my hubby is quite ill...big reason I haven't been around on AllDeaf lately...or even on my computer much. He has to go back to the hospital today for another blood transfusion. He keeps losing blood and doctors haven't seemed to make much of an effort to find out the why and how. He stays weak, tired, and short of breath. Just walking to the bathroom wears him out...and he also has 2 aneurisms in his brain...crammed right together. So if one ruptured the other one would too.

I recently realized that I had subconsciously been preparing myself to be a widow...and the realization just shocked and terrified me. I am having real problems dealing with the real possibility of losing him and facing life alone and deaf.

That's awful! I had noticed that you haven't been on AD recently. So sorry to learn the reason why. You're experiencing something dreadful. I really really really hope that the doctors fix your hubby so he can be around for a lot longer.

 

[mizwytch]

That's awful! I had noticed that you haven't been on AD recently. So sorry to learn the reason why. You're experiencing something dreadful. I really really really hope that the doctors fix your hubby so he can be around for a lot longer.

Thanks. We are getting ready to head out to the hospital in just a short while. I really really REALLY hope they actually make more of an effort to find the cause of the continuing blood loss too...these transfusions are at best a band-aid and within a couple of weeks he's right back down to being nearly bed ridden again.

 

[AOS]

I still get some anxieties when new physicians or nurses begin to work in my unit. I think it is a little bit of ego though. I feel I have to prove my skills and professional capabilities to anyone new. That can make me feel cold and insensitive.

For new AD'ers; I lost my hearing with one semester left in nursing school. I felt devestated. I went from being near 'overconfident' to completely insecure. After a couple years, I finally got HA's and it made a good difference with my private and professional life. My insecurities with some people remain. I still get angry and spitefull when it comes to music and singing. I loved to sing, but now I will NOT do it around anybody. Also, I think I have extreme insecurities with starting a relationship with anybody. I want to go to grad school SO bad to be doctor in genetics. I make excuses every year for not applying, but I really know inside my reason.

Hey hohDougRN.
I am profoundly deaf from meningitis a few years ago. It is unfortunate that the hospital and Drs that treated me did not provide me with pertinent info such as addressing cochlear implants sooner then later but 1 Dr did say something that stood out. He said he had worked with many HOH or deaf medical professionals and found he had a higher comfort level with them as they seemed to pay closer attn to the patients. They quickly responded to light signals and noted things visually that might or were overlooked by hearing ppl for a bit of time. At the time, obviously, I was not aware of how heightened other senses become. I just wanted to share that with you and hope that you experience the same thing. GOOD LUCK TO YOU ALWAYS

 

[AOS]

You are quite welcome wyntr. I know what you mean about learning signing from people much older than you. My ASL teacher is in her 80s and some of her signs are apparently "out of date" when compared to the signs in the book and the website I use to learn and practice ASL during the rest of the week. LOL However, she is open to learning new signs as well. She has been signing since she was 7 years old...from back in the 30s...so I would imagine some signs have changed a lot since then and new ones come along.

I am glad you are finding a peace about being deaf now. I have found some peace with many aspects and having problems with others myself.

My biggest concern recently is that my hubby is quite ill...big reason I haven't been around on AllDeaf lately...or even on my computer much. He has to go back to the hospital today for another blood transfusion. He keeps losing blood and doctors haven't seemed to make much of an effort to find out the why and how. He stays weak, tired, and short of breath. Just walking to the bathroom wears him out...and he also has 2 aneurisms in his brain...crammed right together. So if one ruptured the other one would too.

I recently realized that I had subconsciously been preparing myself to be a widow...and the realization just shocked and terrified me. I am having real problems dealing with the real possibility of losing him and facing life alone and deaf.

I am so very sorry to read of your struggles. I can relate to some of what you are feeling. I buried my 17 yr old daughter, 4 family members & 3 of my closest friends at the same time period as going profoundly deaf from meningitis. hee hee I was told I did not mourn the loss of my hearing. hmmm If ever you would like to chat, I am here. My faith keeps my strong and although I do cry for my child daily, I smile and laugh and have so many beautiful things in life to be grateful for. It took a cpl years for the clouds to move but the sun is shining here and I am sending some your way

 

[wyntr]

Hey Mizwytch --

You and your husband have my happy thoughts and prayers -- cherish everything; forget nothing.

 

[mizwytch]

Thank you AOS and Wyntr. We are now back home and after 4 pints of blood and a colonoscopy me hubby is feeling a lot better. 1 doctor finally paid attention and listened to him when he told her when and how the problem started. She knew exactly what to do and found the problem. Ulcerative Colitis. The lining of the large intestine and colon is gone. Completely stripped away by something in the nicotine patches he tried almost 3 years ago to quit smoking. (Which did NOT work BTW....he only quit smoking when he had a stroke earlier this year and oddly enough he's never had the urge to smoke since the stroke. No withdrawal or anything.)

The pills he has to take for the rest of his life. he can't even go 1 day without them the doctor said. These things don't com cheap either. Over $200+ a month for them...and they are the only ones he can take with the blood pressure pills.

Now, all we gotta do is get the aneurisms fixed. *sigh*

 

[Beach girl]

Wow, you are dealing with a lot! I'm so glad that doctor listened and figured out what the problem is. Rough luck about the cost of the things. Do you have insurance that will help cover the cost?

Anyway, best of luck with all that. It must be quite relief to have figured out what was causing the difficulties.

 

[tigersharkdude]

Ya know I thought I was at stage 7... but this week I feel like I've really only just hit stage 4 or maybe I back tracked?

Struggling...

Im def. at stage 4. Ive been totally deaf for almost one year. It has really taken its toll on me

Everybody takes the hearing for granted but when you lose it...FAIL

Ive noticed that all of my "friends" dont want to have anything to do with me. and with my mother working 9-5 monday through friday, the majority of my time is spent alone.. Ive tried to reach out to the local deaf community but even there I felt rejected because I dont know ASL (cant find any where local that has beginners ASL classes, everything is advanced ASL).

So Ive been rejected by hearies and deafies, who else do I have to turn to?

 

[Hollykins1]

Tigersharkdude,

Don't give up. As for hearies rejecting you, I've come to the conclusion that many think it's "too much work" to meet anyone with hearing loss halfway. Sad. I'm starting to allow myself to not always to be the one who has work so hard. What I mean by that is, for example: My mother is constantly talking to me from another room. I can hear her voice, but can't make out what she is saying. I WAS always getting up and going to the other room to figure out what she was saying.

Her excuse is, "well you've been hearing most of my life, so it's difficult to remember". Well, after hundreds of times of my having to get up and go to the other room, I've pretty much stopped. If she really needs to tell me something, she can come to where I am.

As for Deafies, I haven't found that I've been rejected. It's more that I can't keep up with conversation in larger groups. I don't sign well yet, so yes, sometimes I feel left out. (just as I do in gatherings with hearing people). I did a post about that "void between two worlds".

However, don't give up on learning ASL. There are resources that can help. Not as good as in-person, but better than nothing at all. Online resources, books, DVD's, etc. (I believe there is a sticky somewhere on this forum about that).

With Deafies, I have found as long as I am making the effort, they tend to more than meet me half way. Can't say as much for the hearing people in my life.

So...do what you can to learn ASL

 

[AJWSmith]

I have to agree with you Hollykins1 that nearly all hearing people cannot be bother to make the small adjustments necessary for a HOH/deaf people. For example, most people (including family) will begin a conversation when I can't see their face and so I'm unable to lip read. And all they have to do tap my arm and wait a second. Not difficult is it? I'm not asking for much, but it seems it's too much for them.

 

[Cheetah]

I am always impressed and flattered when a hearing person takes an interest in making sure I can fully understand what they are saying. It's so few that it's startling when it happens. I always make sure that they know how much I appreciate their efforts.

 

[AJWSmith]

Today I'm having a bad day. I feel really low. It was triggered by attending a social event of hearing people and being unable to participate in the group banter and laughter. I miss the lovely feeling I got when part of a group and having fun together. And it's sad to realise that I've lost it forever.

 

[dogmom]

am sorry AJW
change can be very hard

 

[Cheetah]

Wirelessly posted (Backberry)

AJW, I've had this experience many times. Usually I can just shrug it off, but it's not always easy. Recently I visited my GF's family when they were having one of their annual gatherings. About 2 hours in my CI battery died and I did not have any replacements on hand. Her mother was pissed at me because I could lipread almost everyone but her. Plus she was upset I was not participating more. Sorry but when you have to keep reminding folks look at me when speaking and to repeat... It gets old, fast. Sometimes its just easier to sit back and relax. Watch the kids play, pig out on brownies, or chat with the GF (or make out but not in front of her mother... Please!)

 

[glickchick]

Hey everyone,

Really glad I found this posting. I posted my intro in another thread, but here's a quick recap for those who didn't see my first post. 19 yr old girl from NYC, very recently lost my hearing in a car accident.. Now completely deaf.

like some others have said in here, I feel really stuck between the hearing and deaf worlds. I definitely don't think i've accepted that this is now how I am, and i'm not ready to let go of my identity as a hearing person. I don't know ASL yet (starting classes with some some friends and my family this week though), so I don't really feel like I fit in with the deaf community either. I'm not yet good enough at reading lips to make it a viable source of communication, so I'm relying mostly on pad/paper and text messages to communicate.

I am also finding that I have absolutely no confidence in my speaking ability, even though I know I am probably talking fine. So, I am using pad/paper to 'speak' as well.

Not really sure where I'm going with this post, but glad i found it. I hope we can all get thru this adjustment together.

-Lauren

 

[sallylou]

Welcome, glickchick. You've come to the right place.

So Ive been rejected by hearies and deafies, who else do I have to turn to?

Us! The late-deafened.