"I don’t want to be left alone inside myself."
September 28, 2015 11:46 AM Subscribe
I think about losing my hearing every day. There's a genetic test I could have done, but I'm not sure I want to know.
My younger brother is almost completely deaf. It happened suddenly. He's only 35. He was the first in the family to get a genetic test to see what was wrong - he has Maternally Inherited Diabetes and Deafness (MIDD).
He has two small kids and asked his specialist if he needed to learn sign language or teach his kids sign language to be able to communicate. The specialist said he could get by reading lips, since his hearing loss happened later in life. Except he can't hear his kids cry for him at night when he doesn't have his hearing aids in.
With his hearing aids, he's dropped a ton of money on bluetooth devices - he can hear music again and appreciate it for the first time in years. He can hear people when he uses the phone. He can hear the tv and not need to rely on closed captioning or blast his family out with needing a high volume to hear anything. At some point, his hearing will become bad enough he won't be able to use those devices.
Our mother has also lost her hearing. She can barely hear anything even with her hearing aids in. You have to make sure you're looking at her, so she can read your lips and piece together what you're talking about.
Our uncle also lost her hearing. He also has tinnitus on top of that.
And they all have insulin dependent diabetes.
But, it's the hearing loss that's the hardest.
posted by BooneTheCowboyToy at 12:11 PM on September 28, 2015
My younger brother is almost completely deaf. It happened suddenly. He's only 35. He was the first in the family to get a genetic test to see what was wrong - he has Maternally Inherited Diabetes and Deafness (MIDD).
He has two small kids and asked his specialist if he needed to learn sign language or teach his kids sign language to be able to communicate. The specialist said he could get by reading lips, since his hearing loss happened later in life. Except he can't hear his kids cry for him at night when he doesn't have his hearing aids in.
With his hearing aids, he's dropped a ton of money on bluetooth devices - he can hear music again and appreciate it for the first time in years. He can hear people when he uses the phone. He can hear the tv and not need to rely on closed captioning or blast his family out with needing a high volume to hear anything. At some point, his hearing will become bad enough he won't be able to use those devices.
Our mother has also lost her hearing. She can barely hear anything even with her hearing aids in. You have to make sure you're looking at her, so she can read your lips and piece together what you're talking about.
Our uncle also lost her hearing. He also has tinnitus on top of that.
And they all have insulin dependent diabetes.
But, it's the hearing loss that's the hardest.
posted by BooneTheCowboyToy at 12:11 PM on September 28, 2015
My Dad has Ménière's. Thanks for the link Zarq, I'll send it to him. It's very frustrating for him because he is a very communicative person, but he is just such an old dog it's really hard to teach him new tricks as far as taking advantage of technology or things like sign language or lip reading to help him communicate. He's old, plus he can't friggin hear instructions. Basically everything I have said to him for years has been typed on computer or phone or done via charades. The threat of the dizzy spells is also a major issue because he is a person who already has high amounts of anxiety and fearing one of them coming on out of nowhere is terrifying.
Mostly he has led a damn good, very long life so far, but this disability has really stolen a lot of potential joy from him. For several of his grandchildren, he will never really hear their voices. I really urge everybody to go out of their way to be kind and patient with deaf people and find a way to make sure they are still communicating well with you.
posted by Drinky Die at 12:28 PM on September 28, 2015
Mostly he has led a damn good, very long life so far, but this disability has really stolen a lot of potential joy from him. For several of his grandchildren, he will never really hear their voices. I really urge everybody to go out of their way to be kind and patient with deaf people and find a way to make sure they are still communicating well with you.
posted by Drinky Die at 12:28 PM on September 28, 2015
Who let the dogs out?
Who who who?
Who let the dogs out?
Who who who?
Pretty sure it'll be the ear worm from
Hell - whatever I'm left hearing. In the chance that I do go deaf, now we can all enjoy it together for the next few days.
posted by Nanukthedog at 12:37 PM on September 28, 2015
Who who who?
Who let the dogs out?
Who who who?
Pretty sure it'll be the ear worm from
Hell - whatever I'm left hearing. In the chance that I do go deaf, now we can all enjoy it together for the next few days.
posted by Nanukthedog at 12:37 PM on September 28, 2015
Hearing loss is probably the most ignored health crisis in America. It wouldn't surprise me if most young people were beginning to lose their hearing long before they reach 30.
posted by Beholder at 12:43 PM on September 28, 2015 [1 favorite]
posted by Beholder at 12:43 PM on September 28, 2015 [1 favorite]
Hearing loss is probably the most ignored health crisis in America. It wouldn't surprise me if most young people were beginning to lose their hearing long before they reach 30.
Since moving to the US I've frequently been in restaurants where the decibel level reading on my phone hit 110 decibels.
So there is an entire industry worth of people who are likely to develop the hearing impairment of concert roadie just serving food.
And of course because they are going deaf they turn the music up even louder in the restaurant.
In America hearing loss is becoming a communicable disease.
posted by srboisvert at 1:05 PM on September 28, 2015 [5 favorites]
Since moving to the US I've frequently been in restaurants where the decibel level reading on my phone hit 110 decibels.
So there is an entire industry worth of people who are likely to develop the hearing impairment of concert roadie just serving food.
And of course because they are going deaf they turn the music up even louder in the restaurant.
In America hearing loss is becoming a communicable disease.
posted by srboisvert at 1:05 PM on September 28, 2015 [5 favorites]
Hearing loss is probably the most ignored health crisis in America.
I had a friend relay to me when he was finishing med school that he'd learned there were two absolute growth areas in American medicine: gerontology (since so many people are living longer) and audiology (iPods and the like).
He went into psychiatry. Personal preference.
posted by psoas at 2:01 PM on September 28, 2015
I had a friend relay to me when he was finishing med school that he'd learned there were two absolute growth areas in American medicine: gerontology (since so many people are living longer) and audiology (iPods and the like).
He went into psychiatry. Personal preference.
posted by psoas at 2:01 PM on September 28, 2015
Meniere's is a very interesting condition, and not well understood. I see a lot of patients who likely have a misdiagnosis of Meniere's, as it sometimes serves as a catch-all for idiopathic hearing loss or vertigo. This account is a good one, though I'm surprised the author did not experience more episodes of vertigo, which is usually necessary for a diagnosis of true Meniere's. The salt leading to temporary hearing loss is indicative of likely future episodes of vertigo, and I feel sorry for her. Meniere's is a terrible disease, and all you have to look forward to is complete deafness, terrible tinnitus and vertigo, and occasional bouts of ear pain.
I often think the most insidious thing about Meniere's is its slow and fluctuating progression, because it like teases you with the disease and doesn't allow you to really learn to cope with it until it's really bad. And by the time it's so bad that hearing aids can no longer help you, you're usually too old and too down-trodden to be a good candidate for something like a cochlear implant, and so you're sort of stuck living out your days in silence.
But, it's the hearing loss that's the hardest.
Helen Keller used to say that being blind cut her off from the world, but it was not hearing that was the worst, because it cut her off from people.
Hearing loss is probably the most ignored health crisis in America. It wouldn't surprise me if most young people were beginning to lose their hearing long before they reach 30
Ha, try before they turn 20. I see teenagers with noise-induced hearing loss notches all the time. You also have to keep in mind that threshold shift (so you can't hear as soft of sounds as a normal hearing person) is usually not the first damage that is done due to noise. Usually your thresholds stay the same, but you have damage on the auditory nerve, so the amplitude of the neural response is decrease, which leads to all sorts of perceptual problems, notably having difficulty hearing in background noise.
I tell folks all the time: you not wearing ear plugs is good job security for me. But really, if you care about your hearing, wear earplugs any time the sound level is over 85 dB.
Hearing loss in this country is a huge problem. Only 1 in 7 people who are candidates for hearing aids wear them - which is a sad state, given the mounting evidence that untreated hearing loss is a major risk factor for dementia. If you are a candidate for hearing aids, get some. They are not perfect, but they can be life changing.
I'm in the middle of a monthlong vertigo attack which also fucking sucks but I think somehow my coping methods for it are better, because I know it will eventually go away.
Month long attacks of vertigo are extremely rare and extremely concerning. Usually that long of an attack is not peripheral and is more often a sign of a central lesion. Please see a doctor. I don't mean to scare you but even the worst vertigo attacks we usually see in the clinic are a few days at the most.
posted by Lutoslawski at 2:03 PM on September 28, 2015 [8 favorites]
I often think the most insidious thing about Meniere's is its slow and fluctuating progression, because it like teases you with the disease and doesn't allow you to really learn to cope with it until it's really bad. And by the time it's so bad that hearing aids can no longer help you, you're usually too old and too down-trodden to be a good candidate for something like a cochlear implant, and so you're sort of stuck living out your days in silence.
But, it's the hearing loss that's the hardest.
Helen Keller used to say that being blind cut her off from the world, but it was not hearing that was the worst, because it cut her off from people.
Hearing loss is probably the most ignored health crisis in America. It wouldn't surprise me if most young people were beginning to lose their hearing long before they reach 30
Ha, try before they turn 20. I see teenagers with noise-induced hearing loss notches all the time. You also have to keep in mind that threshold shift (so you can't hear as soft of sounds as a normal hearing person) is usually not the first damage that is done due to noise. Usually your thresholds stay the same, but you have damage on the auditory nerve, so the amplitude of the neural response is decrease, which leads to all sorts of perceptual problems, notably having difficulty hearing in background noise.
I tell folks all the time: you not wearing ear plugs is good job security for me. But really, if you care about your hearing, wear earplugs any time the sound level is over 85 dB.
Hearing loss in this country is a huge problem. Only 1 in 7 people who are candidates for hearing aids wear them - which is a sad state, given the mounting evidence that untreated hearing loss is a major risk factor for dementia. If you are a candidate for hearing aids, get some. They are not perfect, but they can be life changing.
I'm in the middle of a monthlong vertigo attack which also fucking sucks but I think somehow my coping methods for it are better, because I know it will eventually go away.
Month long attacks of vertigo are extremely rare and extremely concerning. Usually that long of an attack is not peripheral and is more often a sign of a central lesion. Please see a doctor. I don't mean to scare you but even the worst vertigo attacks we usually see in the clinic are a few days at the most.
posted by Lutoslawski at 2:03 PM on September 28, 2015 [8 favorites]
My mother's family has a history of both mild hearing loss and some sort of audio processing disorder which makes it hard to separate conversation and background noise. I avoid bars when I can, but there's been any number of restaurants I've walked into and then turned around and walked out of. That's easier done now, though, once I've already met people. It's hell when I'm trying to network or attend social gatherings, however.
(The nice thing about being the default host in my social circle, I've found, is that I can police the noise level - and eliminate background music.)
To add to the audio processing issues, I developed tinnitus about a year and a half ago. It doesn't seem to have developed any further, but I spent several months worried that it might progress into actual hearing loss.
posted by steady-state strawberry at 2:06 PM on September 28, 2015
(The nice thing about being the default host in my social circle, I've found, is that I can police the noise level - and eliminate background music.)
To add to the audio processing issues, I developed tinnitus about a year and a half ago. It doesn't seem to have developed any further, but I spent several months worried that it might progress into actual hearing loss.
posted by steady-state strawberry at 2:06 PM on September 28, 2015
I'm very afraid of losing my hearing. I've lost a fair amount already, and have a family history of sudden idiopathic hearing loss, so it's a real possibility. I've always had tinnitus, and was completely used to it, but a new noise in my head started a few months ago, and it stops and starts, and it driving me batshit. What I'm most afraid of is losing my hearing but keeping that noise.
When the noise in my head makes me want to take an exacto knife to my ears, I try to remember to just be thankful that I can still hear. Sometimes that works.
Earbuds are a blessing. Hearing aids, not so much, but better than nothing.
posted by still_wears_a_hat at 2:32 PM on September 28, 2015
When the noise in my head makes me want to take an exacto knife to my ears, I try to remember to just be thankful that I can still hear. Sometimes that works.
Earbuds are a blessing. Hearing aids, not so much, but better than nothing.
posted by still_wears_a_hat at 2:32 PM on September 28, 2015
Hearing loss is just so devistating.
Personally, I wish more people would take the opportunity to learn sign language as thoroughly as possible. It is a complete language with beautiful idioms, grammar and great ways of expressing oneself to others.
Yes, it is difficult and takes investment, but if more people knew it it would help out everybody. Because hearing loss is so common and background noise is so loud and even the best lip readers aren't getting 50% of what is said.
My grandparents can hardly understand me when I speak, and I know some sign but they know none. I sometimes sign at them automatically and they don't understand.
Randomly, the other day I witnessed someone communicating with another women through tactile sign (one of them women was blind and deaf) and it was amazing.
posted by AlexiaSky at 2:48 PM on September 28, 2015 [1 favorite]
Personally, I wish more people would take the opportunity to learn sign language as thoroughly as possible. It is a complete language with beautiful idioms, grammar and great ways of expressing oneself to others.
Yes, it is difficult and takes investment, but if more people knew it it would help out everybody. Because hearing loss is so common and background noise is so loud and even the best lip readers aren't getting 50% of what is said.
My grandparents can hardly understand me when I speak, and I know some sign but they know none. I sometimes sign at them automatically and they don't understand.
Randomly, the other day I witnessed someone communicating with another women through tactile sign (one of them women was blind and deaf) and it was amazing.
posted by AlexiaSky at 2:48 PM on September 28, 2015 [1 favorite]
In America hearing loss is becoming a communicable disease.
Well put. Health campaigns advised the public on second hand smoke, and the same warnings should be made about second hand deafness.
posted by Beholder at 3:01 PM on September 28, 2015 [1 favorite]
Well put. Health campaigns advised the public on second hand smoke, and the same warnings should be made about second hand deafness.
posted by Beholder at 3:01 PM on September 28, 2015 [1 favorite]
Usually that long of an attack is not peripheral and is more often a sign of a central lesion. Please see a doctor.
It's concussion-related bppv, no worries. I mean, it's terrible but all scans have been clear. My meniere's-related vertigo is the kind that just throws you right on the ground when you least expect it and then leaves you seasick for the rest of the day, but it's relatively brief.
posted by poffin boffin at 3:17 PM on September 28, 2015 [1 favorite]
It's concussion-related bppv, no worries. I mean, it's terrible but all scans have been clear. My meniere's-related vertigo is the kind that just throws you right on the ground when you least expect it and then leaves you seasick for the rest of the day, but it's relatively brief.
posted by poffin boffin at 3:17 PM on September 28, 2015 [1 favorite]
That's good to hear! Oh man, month-long BPPV vertigo sounds awful. Usually the only redeeming quality of BPPV is that the attacks are at most a couple hours. Sorry to hear about it.
posted by Lutoslawski at 3:23 PM on September 28, 2015
posted by Lutoslawski at 3:23 PM on September 28, 2015
I've just finished the late Dr. Oliver Sacks' book "The Mind's Eye," about half of which covers the territory of "what will I see when my eyes and/or visual cortex stop working," something he experienced for himself when a retinal cancer and the treatment thereto resulted in him losing the sight, first partially, then fully, in his right eye. (He did not resign the New York Stereoscopy Club.)
The answer, in that case, is "depends on how you used it before." The brain is plastic even in adults; some people turn to other senses to simulate the lost sense (because the brain is happy ot make a guess at what it ought to be seeing), while others lost their visual sense entirely, including visual memory, and their sensory world was populated fully by their other senses.
posted by Sunburnt at 3:39 PM on September 28, 2015 [1 favorite]
The answer, in that case, is "depends on how you used it before." The brain is plastic even in adults; some people turn to other senses to simulate the lost sense (because the brain is happy ot make a guess at what it ought to be seeing), while others lost their visual sense entirely, including visual memory, and their sensory world was populated fully by their other senses.
posted by Sunburnt at 3:39 PM on September 28, 2015 [1 favorite]
The Tinykittens livestreams were linked on the blue once. Rescue kittens, crazy adorable. Livestream the service doesn't provide any kind of captioning service. But unpaid volunteers sit in the chat room and do the best they can to live-caption, in all caps to be 'heard' over the chat spam. There's a need, and it's a community of people who care about keeping it accessible. Having people around you who care about accessibility matters. My grandmother gets a static printed copy of the sermon every week at her church, but if the pastor goes off-script then she has no idea what he's saying.
If I get the familial hearing loss, then I have until my late 50s before it gets noticeable, except I use headphones all the time so maybe earlier. I'm not really bothered by that, but my social group is full of people who text like we breathe. I have the security of knowing that things are likely to improve in the next 20+ years, that a lot of things are already available with captions, and that my support network would not be lost to me by this transition. But... my mom just got her first hearing aids, years after she really needed them, and I think her resistance to the idea is born of the fact that her social group has no idea how to deal with this. They're not going to learn to sign. They're not even going to learn to text her instead of calling. I don't blame her for finding the notion much scarier than I do. I find the idea inconvenient, but not frightening.
posted by Sequence at 3:55 PM on September 28, 2015 [3 favorites]
If I get the familial hearing loss, then I have until my late 50s before it gets noticeable, except I use headphones all the time so maybe earlier. I'm not really bothered by that, but my social group is full of people who text like we breathe. I have the security of knowing that things are likely to improve in the next 20+ years, that a lot of things are already available with captions, and that my support network would not be lost to me by this transition. But... my mom just got her first hearing aids, years after she really needed them, and I think her resistance to the idea is born of the fact that her social group has no idea how to deal with this. They're not going to learn to sign. They're not even going to learn to text her instead of calling. I don't blame her for finding the notion much scarier than I do. I find the idea inconvenient, but not frightening.
posted by Sequence at 3:55 PM on September 28, 2015 [3 favorites]
I've lost about 70 dB above 4K in my left ear. The loss happened about a year ago when a powerful cough painfully pressurized my ear. The ENT doesn't think it's ever coming back. The fullness is annoying. Everything seeming to come from my right is annoying. The ringing is truly maddening. It's like the sound of an old CRT monitor with a bad flyback transformer turned up to 11. I find myself getting really fucking hostile with people even when I don't mean to because it's this nagging thing that never really goes away. I'm getting my hearing aid next week in the hope that it helps with the tinnitus, if nothing else.
At least I still have one good ear. That's more than a lot of people have.
posted by double block and bleed at 5:04 PM on September 28, 2015
At least I still have one good ear. That's more than a lot of people have.
posted by double block and bleed at 5:04 PM on September 28, 2015
Being able to have a conversation with background noise is a stretch goal.
posted by double block and bleed at 5:05 PM on September 28, 2015
posted by double block and bleed at 5:05 PM on September 28, 2015
Helen Keller used to say that being blind cut her off from the world, but it was not hearing that was the worst, because it cut her off from people.
I've worn hearing aids all my life and it really is isolating (not that I'd rather be blind). I will miss 50-90% of a group conversation, so I rarely bother socializing unless it's one-on-one or in a structured setting. People have thought I was stuck up or aloof or daydreaming when really I have no idea what is going on. I'm in meetings and conference calls all day long at my current job and I'm just mentally wiped when I get home because of the amount of extra brainpower I have to use for auditory processing. (Did she say the deadline was Sunday or Monday? Am I going to piss off this executive if I ask him to repeat himself yet again?)
I used to think I was an introvert but I'm not really sure that's true; I think I'd be around people more if it weren't so damned exhausting to listen to them.
posted by desjardins at 5:24 PM on September 28, 2015 [6 favorites]
I've worn hearing aids all my life and it really is isolating (not that I'd rather be blind). I will miss 50-90% of a group conversation, so I rarely bother socializing unless it's one-on-one or in a structured setting. People have thought I was stuck up or aloof or daydreaming when really I have no idea what is going on. I'm in meetings and conference calls all day long at my current job and I'm just mentally wiped when I get home because of the amount of extra brainpower I have to use for auditory processing. (Did she say the deadline was Sunday or Monday? Am I going to piss off this executive if I ask him to repeat himself yet again?)
I used to think I was an introvert but I'm not really sure that's true; I think I'd be around people more if it weren't so damned exhausting to listen to them.
posted by desjardins at 5:24 PM on September 28, 2015 [6 favorites]
Hearing loss in this country is a huge problem. Only 1 in 7 people who are candidates for hearing aids wear them - which is a sad state, given the mounting evidence that untreated hearing loss is a major risk factor for dementia.
Because they're expensive.
posted by Beholder at 6:02 PM on September 28, 2015 [1 favorite]
Because they're expensive.
posted by Beholder at 6:02 PM on September 28, 2015 [1 favorite]
Because they're expensive.
Cost is a major factor, yeah. But if you look at something like the Kochkin report, there are many factors that lead people to not getting them. A huge part of it is still the social stigma; hearing loss is a "hidden" disability. Other people don't know you have hearing loss until you put a pair of hearing aids on.
I could probably fill a book with my thoughts about how insane the price of some hearing aids is, how frustrating the hearing aid manufacturers are, and how criminal it is that many private insurers and medicare (freaking medicare!) don't cover them. I hate it. At my clinic, we don't up-sell people, and we also have sliding scale fees, so getting an "affordable" hearing aid is still possible (affordable here means probably around $1,000 for everything, which is about 1/5 of what a lot of clinics charge). Still, even a grand for something that needs replacing every 5 years is too much for many people, and it makes me quite sad.
posted by Lutoslawski at 6:19 PM on September 28, 2015 [2 favorites]
Cost is a major factor, yeah. But if you look at something like the Kochkin report, there are many factors that lead people to not getting them. A huge part of it is still the social stigma; hearing loss is a "hidden" disability. Other people don't know you have hearing loss until you put a pair of hearing aids on.
I could probably fill a book with my thoughts about how insane the price of some hearing aids is, how frustrating the hearing aid manufacturers are, and how criminal it is that many private insurers and medicare (freaking medicare!) don't cover them. I hate it. At my clinic, we don't up-sell people, and we also have sliding scale fees, so getting an "affordable" hearing aid is still possible (affordable here means probably around $1,000 for everything, which is about 1/5 of what a lot of clinics charge). Still, even a grand for something that needs replacing every 5 years is too much for many people, and it makes me quite sad.
posted by Lutoslawski at 6:19 PM on September 28, 2015 [2 favorites]
I'm just mentally wiped when I get home because of the amount of extra brainpower I have to use for auditory processing
This is something I think a lot of people don't realize - having hearing loss is completely draining. It's incredible what having to put in so much more listening effort will do to you.
posted by Lutoslawski at 6:20 PM on September 28, 2015 [3 favorites]
This is something I think a lot of people don't realize - having hearing loss is completely draining. It's incredible what having to put in so much more listening effort will do to you.
posted by Lutoslawski at 6:20 PM on September 28, 2015 [3 favorites]
there are many factors that lead people to not getting them. A huge part of it is still the social stigma
Yes, and why is wearing hearing aids a social stigma? It's a handicap. It should not something to be ashamed of or embarrassed about. But you look at hearing aids, and they're all about "discreet" and "tiny" and "unnoticeable". So they're not as good as they should be, because they're so small. The microphones in most of them (any that fit behind the ear) face in the wrong direction, and are blocked by the wearer's ear. They're not as comfortable as a pair of cheap earbuds, and they don't sound as good.
And they still show, as often as they don't. Which I don't mind - I'd like mine to show a lot more. I'd like it to be very obvious to the people I'm talking to that I need help hearing them. I'd like them to talk louder to me. I'd like them to know that when I can't understand them, it's not their accent, it's my hearing. Everywhere I go, people are wearing earbuds, bluetooth clips, and all kinds of decorate ear hardware, but the hearing aid makers are still trying to hide my hearing aids.
Yes, they're expensive, but I'd happily pay a lot more for them if only they were better. And they could, and should, be.
posted by still_wears_a_hat at 5:45 AM on September 29, 2015 [2 favorites]
Yes, and why is wearing hearing aids a social stigma? It's a handicap. It should not something to be ashamed of or embarrassed about. But you look at hearing aids, and they're all about "discreet" and "tiny" and "unnoticeable". So they're not as good as they should be, because they're so small. The microphones in most of them (any that fit behind the ear) face in the wrong direction, and are blocked by the wearer's ear. They're not as comfortable as a pair of cheap earbuds, and they don't sound as good.
And they still show, as often as they don't. Which I don't mind - I'd like mine to show a lot more. I'd like it to be very obvious to the people I'm talking to that I need help hearing them. I'd like them to talk louder to me. I'd like them to know that when I can't understand them, it's not their accent, it's my hearing. Everywhere I go, people are wearing earbuds, bluetooth clips, and all kinds of decorate ear hardware, but the hearing aid makers are still trying to hide my hearing aids.
Yes, they're expensive, but I'd happily pay a lot more for them if only they were better. And they could, and should, be.
posted by still_wears_a_hat at 5:45 AM on September 29, 2015 [2 favorites]
A huge part of it is still the social stigma; hearing loss is a "hidden" disability. Other people don't know you have hearing loss until you put a pair of hearing aids on.
Can confirm that in my family this is a MAJOR issue. A number of people who have put it off for years and spent the whole time pretending they were following conversations they weren't.
It's a handicap. It should not something to be ashamed of or embarrassed about.
Shouldn't, I totally agree. But there are vanishingly few disabilities that don't have some kind of stigma. I'd already been thinking about the kittens with relation to this because at a family gathering this weekend, I was showing my grandmother, who gets a kick out of such things, Cassidy, a kitten missing his rear paws who was very sick when he was found, and he's making an amazing recovery and there's a lot of discussion about what can be done to help his mobility long-term. And someone, not my grandmother, mentioned the whole "there are starving children, why should we waste money on a cat" thing. But the reason, to me, is this--that how we treat animals is sort of a bellwether for what we think about human beings. I've had to rescue a cat from my mom that she was going to have put down for treatable medical problems. It's not even an external thing, she's clearly got a deep internalized sense that disabilities don't make people bad, but they do make you lesser.
Of course, whether this hits you young or old, at some point you have to acknowledge that the only way you get out of life without some serious impairment for some period of time is the got-hit-by-a-bus kind of way out. On any given measure--hearing, eyesight, mobility, depression, anxiety, whatever--the majority may be what we consider "normal", but especially over the course of a lifetime, it's very rare to actually be "normal" across the board, and we all have to be considerate of others' differing abilities because we're probably going to need people to be considerate to us at some point. For me, there's not a "them", there's just an "us", and so I'll get whatever accessibility help I need when I need it and I'm okay with that, even if someone else might think things of me I'd rather they didn't. But for a number of my family members, they seem to be convinced that turning on captions is a sign that you're one of the weak ones and you're going to be left behind to be eaten by a lion shortly.
posted by Sequence at 6:50 AM on September 29, 2015 [1 favorite]
Can confirm that in my family this is a MAJOR issue. A number of people who have put it off for years and spent the whole time pretending they were following conversations they weren't.
It's a handicap. It should not something to be ashamed of or embarrassed about.
Shouldn't, I totally agree. But there are vanishingly few disabilities that don't have some kind of stigma. I'd already been thinking about the kittens with relation to this because at a family gathering this weekend, I was showing my grandmother, who gets a kick out of such things, Cassidy, a kitten missing his rear paws who was very sick when he was found, and he's making an amazing recovery and there's a lot of discussion about what can be done to help his mobility long-term. And someone, not my grandmother, mentioned the whole "there are starving children, why should we waste money on a cat" thing. But the reason, to me, is this--that how we treat animals is sort of a bellwether for what we think about human beings. I've had to rescue a cat from my mom that she was going to have put down for treatable medical problems. It's not even an external thing, she's clearly got a deep internalized sense that disabilities don't make people bad, but they do make you lesser.
Of course, whether this hits you young or old, at some point you have to acknowledge that the only way you get out of life without some serious impairment for some period of time is the got-hit-by-a-bus kind of way out. On any given measure--hearing, eyesight, mobility, depression, anxiety, whatever--the majority may be what we consider "normal", but especially over the course of a lifetime, it's very rare to actually be "normal" across the board, and we all have to be considerate of others' differing abilities because we're probably going to need people to be considerate to us at some point. For me, there's not a "them", there's just an "us", and so I'll get whatever accessibility help I need when I need it and I'm okay with that, even if someone else might think things of me I'd rather they didn't. But for a number of my family members, they seem to be convinced that turning on captions is a sign that you're one of the weak ones and you're going to be left behind to be eaten by a lion shortly.
posted by Sequence at 6:50 AM on September 29, 2015 [1 favorite]
Yeah, I've had people complain that the captions are "annoying" for them, and I'm like, wow, I wonder what that must be like, to be annoyed by not being able to see the incredibly vital bottom 2 inches of the screen, I bet it's way more annoying than not being able to understand what anyone is saying without turning the volume up to totally unacceptable levels.
posted by poffin boffin at 9:10 AM on September 29, 2015 [2 favorites]
posted by poffin boffin at 9:10 AM on September 29, 2015 [2 favorites]
Sequence, I don't disagree that there are stigmas attached to many disabilities, but I think the one for hearing loss is stronger than a lot of them, because it's associated with being old. And people don't want to be seen as any older than they have to be.
I'm pretty sensitive to that, but I know I'm guilty of it at the same time. I don't want "old guy things in my ears" hearing aids, I want hearing aids that look like "young hip guy latest cool device things in my ears".
And there seems to be a lot more noise about getting things like depression, anxiety, autism, weight, etc. out of the stigma closet than hearing loss. I know there's an active Deaf community, but I've never seen anything equivalent for just bad hearing, or any activism behind just improving the damn hearing aids.
posted by still_wears_a_hat at 9:26 AM on September 29, 2015
I'm pretty sensitive to that, but I know I'm guilty of it at the same time. I don't want "old guy things in my ears" hearing aids, I want hearing aids that look like "young hip guy latest cool device things in my ears".
And there seems to be a lot more noise about getting things like depression, anxiety, autism, weight, etc. out of the stigma closet than hearing loss. I know there's an active Deaf community, but I've never seen anything equivalent for just bad hearing, or any activism behind just improving the damn hearing aids.
posted by still_wears_a_hat at 9:26 AM on September 29, 2015
I just learned over the weekend that my stepfather has hearing aids now, which he's been postponing for years because he doesn't want to admit he's getting old. Money wasn't an issue - he could have afforded whatever the hip new tiny devices are, and I believe that's what he has now. He just couldn't handle admitting he needed them.
My mom says he's really depressed about it. She also says it's basically life-changing in the sense that he can actually hear and respond and hold conversations with her and with my sister now, which he hasn't really been doing for years. Who knows what those years of semi-isolation were doing for his long-term cognitive and emotional health, in addition to the immediate "can't hear anything" stuff?
So we're happy for him and sad for him that he's so upset, and it's complicated.
posted by Stacey at 9:36 AM on September 29, 2015
My mom says he's really depressed about it. She also says it's basically life-changing in the sense that he can actually hear and respond and hold conversations with her and with my sister now, which he hasn't really been doing for years. Who knows what those years of semi-isolation were doing for his long-term cognitive and emotional health, in addition to the immediate "can't hear anything" stuff?
So we're happy for him and sad for him that he's so upset, and it's complicated.
posted by Stacey at 9:36 AM on September 29, 2015
When I was younger, I lost my hearing rather catastrophically--at first it was total silence and then it progressed to hearing vibrations and then back to nearly full hearing. I still have problems with conversations where there is background noise (do I ask you to repeat yourself three or four times before society says I'm being rude and should give up?) and captions are a must for anything I watch (YT captions are an exercise in frustration but I'm grateful that Facebook auto-play settings cause most videos there to be captioned now).
I would say that one of the most frustrating things about losing hearing is constantly being asked to modulate your voice while in conversation. I could not figure out how to make my voice louder or softer with no referring noise from my ears while I was ill. Hearing people were completely incapable of understanding that, and I ended up deciding not to speak at all because it was better than being told I was shouting all the time.
When the only voice I heard was the voice inside my head, I did find myself going a little squirrelly. This is my singular experience and I do not put that onto anyone else who has lost their hearing. It is extremely disconcerting.
Hearing is an incredibly social experience. To lose hearing, in my experience, was to struggle socially.
posted by librarylis at 10:58 AM on September 29, 2015 [1 favorite]
I would say that one of the most frustrating things about losing hearing is constantly being asked to modulate your voice while in conversation. I could not figure out how to make my voice louder or softer with no referring noise from my ears while I was ill. Hearing people were completely incapable of understanding that, and I ended up deciding not to speak at all because it was better than being told I was shouting all the time.
When the only voice I heard was the voice inside my head, I did find myself going a little squirrelly. This is my singular experience and I do not put that onto anyone else who has lost their hearing. It is extremely disconcerting.
Hearing is an incredibly social experience. To lose hearing, in my experience, was to struggle socially.
posted by librarylis at 10:58 AM on September 29, 2015 [1 favorite]
Oh my goodness yes, poffin boffin. Subtitles all the time and for everything, please! Much preferred over uncomfortable levels of still-difficult-to-decipher noise.
posted by fiercecupcake at 1:25 PM on September 29, 2015
posted by fiercecupcake at 1:25 PM on September 29, 2015
I joined today to respond here. My husband has congenital hearing loss in both ears. His mom started wearing hearing aids at 30. He started wearing hearing aids 12 years ago because he could not hear co-workers and customers. We have insurance but as others have noted, the cost of his hearing aids is not covered. He had purchased his first three pairs of hearing aids through his ENT who had an audiologist in house. The third set cost $5,400.00.
Please know that neither of us work for this company I am about to mention nor any family members or friends. Costco opened in our city around two years ago. In summer 2014, it was time for another pair of hearing aids. Hubby decided to price the ones available through Costco. We were stunned to learn a pair of hearing aids at Costco were $1,899 before tax. He has been very happy with the service and the hearing aids from Costco. The Costco brand hearing aids are digital with remote control and available Bluetooth accessories. I wanted to share this info because it is ridiculous that hearing aids are not even partially paid by insurance. I hope this helps others who need hearing aids. It was worth paying the annual fee to save so much money for this necessary out of pocket expense.
posted by narancia at 5:01 PM on September 29, 2015 [4 favorites]
Please know that neither of us work for this company I am about to mention nor any family members or friends. Costco opened in our city around two years ago. In summer 2014, it was time for another pair of hearing aids. Hubby decided to price the ones available through Costco. We were stunned to learn a pair of hearing aids at Costco were $1,899 before tax. He has been very happy with the service and the hearing aids from Costco. The Costco brand hearing aids are digital with remote control and available Bluetooth accessories. I wanted to share this info because it is ridiculous that hearing aids are not even partially paid by insurance. I hope this helps others who need hearing aids. It was worth paying the annual fee to save so much money for this necessary out of pocket expense.
posted by narancia at 5:01 PM on September 29, 2015 [4 favorites]
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My hearing loss has been thankfully pretty slow but I can't watch tv without subs anymore, and it's hard to follow conversations with any kind of background noise, which makes living in a noisy city a special sort of irritant. I'm in the middle of a monthlong vertigo attack which also fucking sucks but I think somehow my coping methods for it are better, because I know it will eventually go away.
I try not to dwell too much on all the things I've already lost and the things I'm in the process of losing and there are definitely days where I feel lucky to have unbearable arthritis that takes my mind off of how badly I'm going to cope with my eventual deafness.
also I'm trying to learn lip reading in spanish but it's slow going, but how else am i going to retire to a beach in central america to eat arepas with a three legged dog
posted by poffin boffin at 12:02 PM on September 28, 2015 [6 favorites]