Another excellent blog from the Phonak community on the impact of “Never mind, its not important” on all of us, not just the deaf or HoH.
I’m often the identified person who is expected to attend to someone else with a hearing problem. Yes, I do have a lot of information, but most people don’t know that. What I am is up front about my hearing loss and ask for access so the hearies think I’m the expert and I’ll help everyone else with hearing loss because I have some vast store of insider knowledge and know just what to do.
I know about my hearing loss. I don’t have insider information on anyone else’s hearing loss. I’m not an audiologist nor an ear doctor, just one more deafie in the world trying to live my life and maybe help a few other people along the way.
I recently met a guy with bilateral hearing loss that is probably in the serious range, maybe headed towards profound. (See chart below) It took a few encounters, but it has become apparent to me that his loss isn’t just one of not being able to hear at a normal volume, he is missing chunks of tonality. And like many older people with hearing loss he’s got problems with upper registers, which includes women’s voices, birds, dripping faucets, and fricatives such as the /f/ in the word fine. It creates conundrums of being able to hear a phone ring but barely able to distinguish the conversation.
Unfortunately, many of the older late deafened are not tech savvy and are at a distinct disadvantage. Many have no hearing aids, have no idea about any services to help with hearing aids, don’t know the difference between analog and digital aids, and some don’t have computers, let alone smart phones, and rarely do they know ASL. The gent I met has no hearing aid, no smart phone, no cell phone, and barely has a functioning desktop computer. He also doesn’t have a clue about taking a pencil and pad of paper with him.
He has not acted on information I emailed to him; when I’ve asked about his follow up I get non-sequiturs. That tells me he is guessing at what I’m saying. Next time I know I’ll be seeing him I’m going to take my iPad and type in what I’m saying so he can understand me. Maybe I can show him that a pencil and paper or a tablet can enhance his ability to understand conversations. That’s about the limit of what I can do unless he follows up.
So, hearies, we deafies really don’t have an easier time of it with another deafie than you do. Not unless we both sign or we both understand a least something about coping with hearing loss through things like shared knowledge about equipment that can make life easier. One thing I do have that many fully hearing people don’t is nearly infinite patience dealing with a late deafened adult trying to cope.
Even if I do know about services and equipment it only goes so far because the other deafie needs to be able to gain my knowledge and then act on it. Denial is a wide river and people seem to be afraid of moving out of a comfort zone, no matter how uncomfortable that zone has become.
These are some great concepts for hearing aid wearers. Are there other things we could suggest to vendors such as Phonak?
I used to assume the reason I am totally wiped out after being around a group of hearing people for hours is that I’m an introvert. (Note, not signers, just hearing people.) More likely it has to do with what I like to call Sensory Input Overload.
One of the symptoms of PTSD is hyper-vigilance. That’s also one of the characteristics of a hard of hearing (HoH) person in a noisy environment where there are large numbers of people talking at the same time. We switch into alert mode, scanning faces and voices and paying so much attention that if someone drops a coffee cup we over-react to the unexpected, loud, sharp noise because our brains have been recruiting sound.
For a long time I’ve had an app on my iPhone to measure the decibel level of places I go. 85 db is where hearing damage starts. Lots of restaurants, especially those with loud music, exceed that and run in the 90-100 db range. Large coffee klatches after church can hit the 85-90 db levels. Know those annoying gas engine two-stroke leaf blowers? They put out 90-100 db on average and operators are supposed to wear hearing protection. When a gathering produces as much or more noise than a gas-fired leaf blower there’s a reason I can’t cope.
I’m told by hearies “no one understands” everything going on. That may be true. But I’d love for them to wear noise canceling ear plugs and give it a try talking to someone in a noisy venue. Repeatedly. Because if you walk into the bathroom, turn on the shower, shut the door, put your fingers in your ears, and have a person on the other side of the door face away from the door and speak to you in a normal tone of voice THAT’s what I hear. Good luck with that.
Because people with hearing loss work so very hard to understand their auditory environment it is a full time job for the brain and body when hearing is engaged. Imagine working out at the gym for hours. When I leave after several hours of weight training and cardio I’m like a limp rag. I can get that way after even the most anticipated meeting of a writer’s or photographer’s group because I have to be “on” all the time, just like you have to be “on” while you’re running on the treadmill. Try being “off”on a treadmill and that’s where you’ll be: off – on the floor.
Things that contribute to hearing fatigue as a result of hyper-vigilance include:
Anxiety – did I not hear something? mishear something? give a non sequitur response? why is he looking at me like that? what did I miss?
Heightened continual scanning of the environment – is that noise meant for me? if I answer am I answering someone else’s communication? If I don’t answer am I being rude?
Then there’s the lip-reading component. The number of people who assume I’m attracted to them even after I’ve told them I lip read to assist the sound I hear is incredible. Really. Don’t go there. I have enough problems without you thinking I’m flirting .
I can lip read one person, two is iffy, three is a nightmare. Four and I’m looking for a corner to insert myself into to control access. I’m not being introverted, I’m overwhelmed. There’s a difference.
So, if you have a friend or relative who avoids large gatherings it is probably because there’s no accommodation for him/her to participate one person at a time. And if you are that deafie (like I am) who staggers off, takes two aspirin, and collapses in bed for two hours to recover: that’s a normal response to being hyper-vigilant.
Take two catnaps and call me in the morning.
Attended services in a laity led fellowship today. One of the two presenters had a full beard. Since I’m learning how to decipher the Texan version of English I need to be able to lip read to have a chance of getting what’s being said. Later we had a spritely older woman who gave her impression of attempting to swallow the microphone while speaking so lip reading was out of the question there as well.
I was doing a mental Oṃ maṇi padme hūṃ chant to pass the time as I stared out the window at falling leaves. My monkey mind suggested I could break out my own FM equipment and try that next week, so maybe that’s an option. After all, it would bluetooth the sound to my hearing aid.
And so it goes, adaptation to life back in the states with Texas style English. Loud venues. Lousy acoustics. The plethora of personality types we run into in life that make communication easier or more difficult.
Why is it so hard to believe that someone without a “deaf accent” is hard of hearing?
Met a new primary care and her staff today and I was thrilled that the nurse/tech and doctor were oriented on making sure I could hear them. I did have to explain to the doctor that yelling distorts the voice – just talk “to me” so I can see her and enunciate.
But the other staff…not so much.
- I need to know you are talking to me when you talk or you’re not talking to me.
- Don’t just start talking and assume I know you’re trying to talk to me.
- I need you to look at me when you talk otherwise I can’t watch your mouth.
- I need you to stop putting your hand over your mouth when you talk.
- Why? Because it muffles your voice and I can’t read your lips.
- Don’t question that I can’t hear you – I’m not insisting on communication like this because of an unmet need for attention.
- Yes, I know I don’t “sound deaf” but that doesn’t mean I can hear you.
I know every time I go to a new professional office there’s a certain amount of reeducation that has to go on. I just wonder why medical professionals – even their front office staff – don’t “get it” that many people, especially in my age group, have hearing problems and sound perfectly normal, since most of us grew up hearing.
In Mexico I didn’t speak the language so I was pretty much functionally deaf all the time. Here I find that I expect more – as in I want to be able to understand my fellow English-speaker.