We with hearing loss have no real community

HEY! We’re the community right here! I totally LOVE that I have the forum to turn to for advice, tips, tricks and RANTS.

While I don’t know sign language and manage darn good with my Phonak Lumity Life aids, it’s true that those outside our “brotherhood” don’t GET the issues of day-to-day life. F’instance: many medical clinics still require staff to be fully MASKED UP. On top of which a few work behind bulletproof glass! So when I check in, I almost have to GUFFAW at the challenge of answering a dozen questions before I can even get in to see a doc. It is what it is. I usually don’t need anyone to repeat a question or request, so I guess I fit in with the HEARING world - for now.

I get you on the “struggle” to communicate. My dear hubs has perfectly normal hearing, but as we both age, it’s HOW we communicate that frustrates me. It seems we forget the right word, verb tense, sentence structure or some kind of basic skill to get our message across. I’m as guilty as he is! But that’s where the frustration starts. “What are you saying?” (then I give my point) He’ll say, “No, that’s not what I mean” and after 10 min of back and forth it turns out we are on: 1. the IDENTICAL wavelength, but one of us has spoonerized the sentiment, or: 2. I acknowledge what he’s said and come up with a counterpoint that he simply DOES. NOT. GET. No amount of my explaining seems to get my counterpoint across.

Well. If this sounds like a path you’ve walked, just take a deep breath, focus on a mantra, say “Uh-huh!” and walk away. You can always go scream into a towel or something.

Just my nickels’ worth of experience here.

@cvkemp

I joined a forum which became this one….Ineeded help because I knew so little

I left and came back a long while later. Registered here.

Your posts have helped me so much.

Thanks Chuck!

@cvkemp said:

We hard of hearing don’t have a separate community

You’ve created a fine community with your volunteer work at the VA Audi Clinic, as well, so there’s that!

Yeah Chuck, I have often thought about this over the years… We are on the periphery of society… Collectively we are large, and if someone or some party could harness that voting power, probably 60 to 70 million HOH voters in the USA alone, that is quite a considerable lobby! We don’t fit in, and few of the hearing world, understand our problems, most don’t care, it’s not their problem… I agree with @1Bluejay, we have a community on this forum, which is very helpful, and the
“go to” place when we have problems or issues with our hearing aids… Cheers Kev

I have more trouble with my family than with any other group. I am speaking in general with HOH individuals. That lack of support is why so many refuse to get aids. Also, other than at the VA i have trouble with private and public doctors and at hospitals, and local government offices. I have even had a woman at the local DMV office tellme it isn’t her fault i cannot hear her and for me to live with it. And I had trouble with the county jury manager here, as the judges here don’t allow any type of electronics in the court room including hearing aids. I finally fought with the jury manager, by having a letter from my audiologist, the legal department at the VA and finally with ome of the judges. I bluntly told the judge that i can’t think of a better reason for the defense to scream miss trial than learn that ajury member was technically deaf,and didn’t know sign language. I was excused and haven’t been called since.
I was raised to be honest,bluntly honest and have been called brutally honest a few times.

I see this could be an advantage: hear me out!
If we are invisible and secretly interspersed throughout society, we can fly under the radar. We listen harder. We pay attention to body language. We can be underestimated, which allows us to study a situation carefully before we wade in to make our mark. We have ways of recognizing each other. Wow! All the Masters of Disguise would pay big money for that! That is my story, and I’m sticking to it! Be well!

Exactly this.

I was born hard of hearing but went through mainstream education. While I have a lot of interest in Deaf culture I’m acutely aware that I’m not part of that world and…won’t be. Ever. Even if I lost all my hearing now.

Equally, I’m not Hearing either - I can’t function without my hearing aids. I’ve long felt I’m somewhere between those two stools. Sympathetic to Deaf but equally a product of Hearing society.

Garethjwells: I totally agree with your 2nd paragraph as that is also where I am.
Just don’t seem to belong anywhere, just interloping wherever I go.

Growing up, I had good hearing, and my whole family including grandparents and even my great grandfather had super hearing. And now my wife has great hearing and she is older than I am. My hearing loss as i am coming to understand is a combination of a mild cookie bite loss and the extra loss due to extreme noisely conditions while in the military. The very mild cookie bite was only noticeable in the fact i could not pronounce words correctly to spell them, but i could hear a pin drop and i could as a child and teenager hear an animal moving in the forest at great distances.But in the Navy working in noisy environments like flight lines and equipment rooms has totally destroyed my ability to understand speech without the highly adjusted hearing aids. And the normal way of adjusting hearing aids for the majority only makes things worse. For me finding the correct adjustments was a 18 month process of monthly appointments to find the correct adjustments for my hearing loss. Without my aids i hear low and high frequency sound but nothing in the normal speech range. It is like i have a dead area in my ears. When doing the word recognition test my audiologist set the level of the test to 90db andi still only hear about 50%. And when normal people talk i don’t even recognize that they are talking as it is lost in the white noise of my tinnitus.

My dad was career Navy. Started in WW2, then the Korean War. He wouldn’t wear hearing aids… but I do.
Reading your description helps me. I hadn’t thought it out like you have and you’ve helped a lot.
I had the good fortune to be at sea on a small aircraft carrier. I would have followed your path if I wasn’t colourblind.

“And when normal people talk I don’t even recognize that they are talking as it is lost in the white noise of my tinnitus” sounds like me too!

Thanks for posting…
DaveL

Wow, you’ve had challenges! But I sure ENVY that pin-drop hearing you also experienced. My dad also lost the rest of his hearing in a sub during WWII, so even tho hearing loss ran in the family, his really got destroyed.

I SO empathize with your long journey to get the aids fine-tuned to what YOU want for speech clarity. It’s just a maddening process like operating in a black sack. We know what we want and need in our hearing solution, but it’s totally up to the fitter/audi to make that happen. I think that’s why so many here have turned to the DIY route. I’d do the same if I had that kind of mind and time to learn the software. It can’t be rocket science!

What you describe about normal people talking and not even recognizing they are talking is precisely what I experienced with the Oticon OPN aids. It was a puzzle as I had programs set up, but the ambient sounds simply overwhelmed my brain. Have you tried Phonak Lumity Life aids? I’ve lost track what “camp” you’re in!

All I know is that I had a transformation once I switched from Phonak Marvel to the Lumity Life aids. It didn’t happen overnight. But with each incident of my being able to comprehend what was said (like a “EUREKA!” moment every single time) I leaned in to my own ability more and more! So their claim of speech clarity worked for me, and after weeks of fine-tuning the programs and settings, I’d say I finally arrived at my optimal point.

O’course if the aids were WATERPROOF as claimed by Phonak, I’d be in 7th Heaven! But I’m okay without that for now. I hope you’ll never give up pursuing what needs to be changed with your aids and able to articulate your issues and goals to a patient audi. They’ve got to LOVE what they’re doing to do their best for US. And finding that rare professional is like winning a lottery. Keep us posted on your reality for sanity checks here.

I figured out early on that I am a natural troubleshooter, and the Navy picked up on it and really taught me how to use my natural skills. I can troubleshoot anything that i can find the information on to understand it. In the Navy it was electronic equipment, and i was known to fix almost anything from communications equipment to radar, to early computers and even vehicles from the electrical to the mechanical. After the service i paid my way by working in electronics while educating myself in computers, from hardware to software languages. I can not develop or design software but i did a lot of quality control and software troubleshooting. I retired from Dell computers as a Microsoft Master Certified Systems Engineer, my specialty was the email servers and internet servers.