Adjustment to late onset deafness

Valorrian

Active Member
Hi, I'm Val, 20 years old. I had meningitis back in 2016 and lost my hearing. It has been and still is very hard for me to accept. I'm angry and depressed a lot. After a lot of isolation, two years or so, I decided to do something about it. Mostly due to my mom begging for me to join the world again. I went to the audiologist to see if she could help me. She sent me for a Cochlear Implant eval. and told me that her hearing aids weren't strong enough for my loss. I went through the CI qualification process but didn't qualify. My ears are too messed up from the meningitis for the CI to work right. This made me angry and depressed all over again.

I'm seeing a therapist for acceptance of my deafness and anxiety that has come from it. I found out that I have PTSD from the meningitis too. My therapist is very optimistic about me. He told me I have a lot of potential. He said deaf doesn't equal a death sentence. I can still have a full and meaningful life and he would help me navigate this new world.

When my parents and brother first knew I lost my hearing they took sign language classes to help me but I refused to learn with them. I was just to mad. I didn't want to be deaf or anything to do with the deaf. Now, two years later, I am learning to sign. I have a private tutor and she teaches me one on one. At first I didn't think it would make a difference. I didn't think I could learn sign language because after the meningitis I have trouble focusing, and remember things but I am learning even if it is slow. It helps me that my family signs to me. I don't feel left out with them anymore. I did feel left out, but that my choice before when I didn't want to learn sign. I'm still isolating myself, but I'm working on it with my therapist. I'm taking things slowly. Did go out last week to church, which I haven't been to in ages. There is progress going on here even if it is at a snails pace. I hope to make some friends and share some experience here with all of you.
 

Bear

Well-Known Member
Valorrian,

I did the same thing when I first lost my hearing at the tender age of 14. I believe my story is posted somewhere in this thread. I think it is very natural to feel anger and resentment. We most certainly didnt ask for or want this. I have been deaf now for 33 years. I have long come to accept that I am deaf and have made many friends. Don't give up, there are some very beautiful things about being deaf. Are there days when I still get angry, jealous, or resentful? Hell yes! It is not really about accepting who you are or what you are. It is about something was taken from us. We didnt ask for it. It just happened. Those that were born deaf or were deaf from a very young age have a hard time understanding why we feel this way. Many take pride in their deafness. I think that with help and time you will do just fine. Continue with the therapy and sign classes. It may also help to find a social group around you to help you see that there are many just like you and that there is a whole community with its own rich culture and history. Good luck to you.
 

Valorrian

Active Member
Hi Bear,
Thanks for the encouragement. I did go back and found your post. It is interesting how it takes so much time to accept things. Are you still wearing your CI? Does your CI implants help you hear well? or do you still need to sign and lipread? I tried for CI implants but did not qualify. They told me that my ears have to much ossification and degeneration to the nerves.

I see that many people take pride in their deafness. Maybe one day I will too. At this moment in time I'm not proud to be "deaf". I don't want people to even know I have a hearing issue. If I could hide it the rest of my life I probably would. I don't like to use the word deaf to pertain to myself, I always say I cannot hear. I don't like to label myself. Why should I have to. I know it means the same thing but I don't view myself as really Deaf even though I can't hear anything. Does that even make sense? Hence the reason I'm in therapy and learning how cope. Thanks again for the support.
 

Valorrian

Active Member
CI Implants? No I don't qualify. I have already went through that process. My ears are really messed up from meningitis.
 

Bear

Well-Known Member
Hi Bear,
Thanks for the encouragement. I did go back and found your post. It is interesting how it takes so much time to accept things. Are you still wearing your CI? Does your CI implants help you hear well? or do you still need to sign and lipread? I tried for CI implants but did not qualify. They told me that my ears have to much ossification and degeneration to the nerves.

I see that many people take pride in their deafness. Maybe one day I will too. At this moment in time I'm not proud to be "deaf". I don't want people to even know I have a hearing issue. If I could hide it the rest of my life I probably would. I don't like to use the word deaf to pertain to myself, I always say I cannot hear. I don't like to label myself. Why should I have to. I know it means the same thing but I don't view myself as really Deaf even though I can't hear anything. Does that even make sense? Hence the reason I'm in therapy and learning how cope. Thanks again for the support.

Your welcome, I am glad you found my post. I wear my CI when necessary. I can hear with it but not as well as I had hoped to. Whether if that has to do with me not working hard enough to hear with it or just not getting enough practice, I do not know. I preferred my hearing aids. Call me spoiled but I too would rather still have my natural hearing. I do sign and lipread on an almost daily basis. My husband is deaf but my mother in law is HOH/Oral so I am forced to lipread her on a daily basis.

I can understand the feelings of not wanting others to know you are deaf. That has never bothered me before at all When I first lost my hearing, I was devastated. I was just like you, I withdrew from the world. It took me a whole year to even get off the couch and attempt to talk to people again. I slowly came to terms with it. I have accepted that I am deaf but I do resent the fact that others can still hear and I was the one chosen to be deaf. I mean I sometimes to this day ask.....why me? I see my daughter talking on the phone and getting jobs so easily because she does not have the barriers and I am even more resentful. I see people enjoying music and sound and feel like such an outsider. Yet, I am equally grateful for being deaf. Because of my deafness I have had the privilege of learning how to sign, meeting some awesome people, and belonging to a culture that is rich with diversity and history.

It's not easy and each day brings a different struggle and a different way of seeing things. Eventually though, given time you will come to see that being deaf has its blessings too.
 

Valorrian

Active Member
Thanks. I want to get to the point where I am comfortable in my own skin and am able to be me. This morning I went in the pool. I didn't swim. I just sat in the water and then I decided to see if I could float on my back. It made me feel so peaceful. I let my self go. I've been holding myself together so tight all the time trying not to fall apart that just letting go felt great.
 

Old Analog

Member
Dead val, greetings from old analog, the story goes once upon a time, I was young and many people around me were dying through no thought of my own I helped, I grew and joined the forceses, putting off my first two chooses I chose medical thinking future, skipping, my first hearing test was with no remark upon release was told high frequency hearing loss, no comment, later hearing test at work high frequency hearing loss maybe comment Don t remember, then late 90' s new job hearing test tester told me if I couldn't hear this I couldn't get the job retested and let me cheat, more on that later, several incidences I emerged ok, company started new policy annual hearing test, had accident knew couldn't pass hearing test to be returned to work, had out side hearing test was finely told how bad it was, struggled next 15 years, again had accident this time no recovery could work no longer, drive on longer, year of pain in a body cast then soft brace just getting over the depression, then I got sick, now it got bad, there were to treatments, quit eating and or be blead monthly, a year and a half of no food 5 heart attacks and the loss of the ability to have sex my biggest lost, I didn't die, though I wished it oftin , what no one told me was one of the side effects of my condition was deafness, having my hearing diminish over 30 years my deafness was easy to except, the others are still a struggle, that's the short story, not to mention the tinnitus and my ASL story
 

Old Analog

Member
PS on the CI thing not four you or me or any one who has any viable hair cells left in there cochlear, thousands of cells CI 12 you'll hear sound but not what you remember, I responded to temp deaf across from this thread check it out
 

Old Analog

Member
Oh! On the proud to be deaf thing no I'm not nor am I ashamed just as if I were an amputee it's my new normal, for a long time I called my self hard of hearing because I was not born deaf and I could make out most words, but I have diminished a year or two ago to the point where it hurts to much to try to understand most spoken word I didn't want to miss appropriate though I still hear some sound I can't comprehend spoken word so that makes me deaf, my hear aids give me sound not understanding, the problem with hoh is people think if you just speak louder you'll understand, and that may be true with volume deafness but not my kind of deafness
 

Valorrian

Active Member
You have been through a lot. I hope you are able to get out. How do you spend your days? I’m getting out more and more. I still have a lot of anxiety but it’s better then before. What is your ASL story?
 

Old Analog

Member
Greetings my 15 years of trying to be a hermit wasn't very successful, when my geen turned on that took away my ability to comprehend spoken word and memory, I tried to revive my signing skills I learned when I was young, only to find langue changes over time, and I couldn't remember much anyway, so I returned to be close to my children thinking if I die they won't have far to go and if I don't maybe I could find a deaf community here in NW Ark., Where I was at the time was nothing, but I never met but heard of another deaf through the librarian, before I have chance my children rescued me, so here I am took a year to find deaf community been learning, agan, AS L they say I'm doing good but I know I used to understand more, my memory is getting better ,I think ,repetition and practice daily I say daily, I'm sure I'll remember as soon as you tell me, so now start second year Saturday 21 September big deaf expo hear for deaf awareness month, you where what do for deaf awareness month? As far as gitting out, now hurts to much to ride in vehicle, 4 miles to town ride bicycle every day get food for day made friends with checkers they sign thank you to me, Friday volleyball at seenyour center, no not what you think, chair volleyball some in wheelchairs some one arm some just old you never laughed so hard, no one can remember the score or who just served, oh! and we play with a beach ball so lots of head shots don't hurt but are funny, we've only had a couple of people fall out of there chair, most use hearing aids but only a couple interested in learning ASL, so is life were all at our own pace, it's nice to have one to walk with if not run, and when we think we're alone are we really, NO!Remember just because you can't see it or hear it feel it tast it (on yah I've also lost sense of taste forget about that one) what am I missing oh ya remember it, you're not alone even if you want to be
 

Valorrian

Active Member
Glad you are so positive. I can imagine how it must be to play volleyball sitting down. It’s good you you are getting out and not house bound. I don’t go out much. I’m thinking about going back to college. The first time, I took two online classes and they were overwhelming for me. I have cognitive issues after the meningitis and it makes it hard to learn new things. I didn’t finish those classes. I audited them. I know before the meningitis I was smart and now it’s a struggle. That is hard to accept my decline. My dad just keeps telling me not to give up and try something new.

I haven’t thought of doing anything for deaf awareness month. They had a Deaf Expo here during the summer but I didn’t go. My dad was in the hospital at the time. Maybe the next one I might go. Did you go to the Deaf Expo there? How was it?
 

Old Analog

Member
I'm back from Expo met old friends and made new, been busy getting back to school, having new grand children, and I lost this thread took a while pageing through and getting side tracked down some rabbit holes, so here is thought sports it will get you out and help with cognition, my favorite fencing ( you know sword ) or tiche you might find it free in the park youga, big now days but I'm not a big fan, archery not too expensive, swimming always good but summer over;)
 

Old Analog

Member
Fencing, archery, deaf friendly not a lot of crowd noise low impact, and big on situation awareness, one day in cafeteria one who sat at my table, deaf, old, always let first, was standing did not sit down as normal, I noticed he was looking, noticed what was on his plate, got what he was looking for, person next to me asked are you a mine reader, no but when your deaf you become situational aware, and one on one of two not big groups so much easier when your deaf;)
 
Top