pandora_parrot: (Default)
It may only be a mild-to-moderate hearing problem, and it may only affect me a portion of the time, but it affects me enough to upset me and warrant further reaction from time to time.

It's such a strange experience, this CAPD. I find myself in the odd position of sometimes having normal to above average ability to hear people, and other times unable to understand even the simplest of conversations.

Even more strange is the experience of going into situations and environments that trigger my CAPD, and having familiar feelings of isolation, loneliness, etc, but now knowing the reason for it. It's like... I've had this feelings all along and never realized that they had anything to do with not hearing well.

Then there's the strange fact that I now realize I have no idea how typical hearing people hear. How different is it from me? I noticed that I've made some assumptions about the way people hear, such as the need to look at and pay attention to someone or something to fully understand what is being said. Like a movie or listening to a person in a noisy environment. Yet I intuitively understand that someone can look away while listening in quiet environments, where I can hear well.

Then there's the fact that this is all about *comprehension* not actually hearing. I actually hear every single sound and word everyone is saying more or less just fine. It's just that when things aren't working well, I can't pick out speech and other important noises from all of the other noises I'm hearing. It's a big messy jumble. As a result, it's hard to even grasp when I'm understanding people and when I'm not. Add to that the fact that I comprehend better on one side than the other. If someone is on my right side, I'll be able to figure out what they're saying better than if they're on my left. But both *sound* the same to me. It's all about my ability to comprehend it.

It's like this. When my hearing doesn't work, I might hear someone say "Maibry inguh mubela". But I turn my head, improve the environment, ask the person to repeat themselves, whatever... and I get "Maybe bring an umbrella." Same sounds. Same noises. But my ability to put the sounds together into comprehensible words changes.

And that is so WEEEEIRD. The only way I can tell that something is going wrong is when I'm starting to lag on what people are saying, miss what they're saying, etc. Unfortunately, it all actually *sounds* the same to me.

The past two Sundays, I've gone to breakfast at a Hobee's restaurant in Campbell. The acoustics on the place are absolutely terrible. The place is very echoey and loud, which makes my ability to hear fall apart. When it was just me and my girlfriend there, I was able to communicate with her with some difficulty, but when it came to talking to the waitress, she kept popping up on my bad side, and I couldn't understand what she was saying. It actually made me break down into tears. I've been doing experiments with my hearing to see when and where it breaks apart, but that particular situation was one where I was just trying to enjoy my breakfast, and my inability to hear the waitress was intruding and frustrating me.

The more recent Sunday was a similar situation where I was just out to get breakfast with my friends, this time our group was 5 people large. And again, I was having trouble following the conversations. I was kind of surprised to see how powerfully it affected me again. Familiar senses of being isolated and abandoned were coming up. I felt like my friends didn't care about me and didn't have any interest in communicating with me, and were leaving me behind in the conversation. It was shocking how powerfully these feelings were hitting me, and it makes me wonder how often they've hit me in the past without me understanding *why.* This time, though, my friends openly welcomed me to ask them to help me communicate, and I did. It was difficult for me to trust them to try to communicate well with me, but I did manage to feel a little bit more part of the conversation when invited to ask them to repeat themselves more and stuff like that.

Still, in both these situations, I felt that familiar feeling of being "peopled out" afterwards. I believe I understand now why I could never figure out why sometimes people tired me out, and why they sometimes energized me. When I can hear people, my extroverted tendencies mean that I gain energy from out interactions. But when I am struggling to hear them, it becomes emotionally and mentally exhausting, and I just want to hide in my room and cry or whatever.

I'm definitely struggling to be more assertive about asking to get my needs met. Yesterday I dropped my car off at the auto shop, and when the clerk was talking to me about what needs to be done with my car, he kept turning away and talking to his computer. Since this was a bad acoustics room, I was having trouble understanding him. My girlfriend started signing at me, telling me to ask him to look at me when he spoke, but I said I was shy and started dancing around to try to get more in front of him. My girlfriend kept insisting, until finally, she gave up and asked him herself to help me out.

Date: 2011-12-20 07:14 pm (UTC)From: [identity profile]
I think I have some level of this too. I was told once that I was being anti-social in a restaurant because I wan't talking to other people at my table. But with all the background noise, I couldn't filter out what people were saying.

I have a hard time concentrating on what the person I'm talking to is saying if a lot of other talking is happening nearby. I keep getting pulled out of my conversation to listen to other peoples'.

It's left me with that same feeling of being left out, and wanting to talk to people but feeling unable to.

Date: 2011-12-20 08:50 pm (UTC)From: [identity profile]
Sounds familiar. Everything you're describing are symptoms of a mild to moderate hearing problem. Usually, it's not even something exotic like CAPD. It's just ordinary hearing loss.

Date: 2011-12-20 08:50 pm (UTC)From: [identity profile]
Your posts on this have prompted me to ask: who did you talk to about this diagnosis? Because what you're describing is eerily accurate, down to the details, of what I experience with hearing. o.o It's making me think I might wanna talk to someone about getting tested. It's all so uncannily familiar.

Date: 2011-12-20 09:01 pm (UTC)From: [identity profile]
I know, right? I was shocked when I started studying this stuff and seeing an echo of my own experiences in people with hearing problems. Apparently, studies have shown that a huge percentage of supposedly hearing Americans have mild to moderate hearing loss and don't even know it. The average length of time from onset of symptoms to actually doing something about it is 7 years.

Just so you know, there are a number of conditions that relate to CAPD, such as ADD, autism, ADHD, Asperger's, and others. Sometimes a person will be misdiagnosed with one, and sometimes multiple conditions can be present. I used to think I had Asperger's because of my difficulties with social interaction and other things. But now, I've come to realize that all of my problems can be traced to CAPD. I'm not aspie at all. I just don't hear well.

Most audiologists can help you out with this. The first step is always to rule out conductive/sensorineural hearing loss, as that is almost always the actual culprit. If they don't find that sort of loss, they can probably refer you to an expert in CAPD who can look beyond the ears into the brain to see what's up.

I went to see Dr. Judy Patton: If nothing else, she might be able to refer you to an audiologist that can help you.

I'm curious. Would you be willing to share more of your experiences around this? I'm interested in talking to other people about their experiences and hearing what they experience.

Date: 2011-12-20 09:59 pm (UTC)From: [identity profile]
Most of my life I've had a pretty high rate of, well, "I didn't catch that" errors. A lot of the time it's due to background noise -- I can hear the people talking but there's no auditory "priority" for human voices, so I hear the sounds but not the *words*, or do so very slowly. Even when there isn't background noise, it seems very easy for me to lose track of spoken sentences -- I'll be listening to someone say "And I think we're going to have to tell her" (for instance), but what I actually heard was "amba feewa goa hama tella" or something even less sensible, and I need them to repeat it. It's especially annoying because often I'll miss like one word out of the sentence, say a verb or a noun, but I've got the rest, and if they repeat themselves exactly it'll click...but they almost never repeat themselves exactly, they say it again in a completely different way, and I might mishear that too.

That and if I ask them to repeat more than twice they'll usually just go "nevermind", which is really frustrating when I'm almost there. >> I also sometimes seem to unconsciously pattern-match, which results in funny "bad lipreading" or "misheard lyrics" moments where I *know* by simple probability that what I heard can't possibly be right, but it's what I heard anyway.

Accents, oddly, don't give me much trouble.

And the thing is, a lot of the time it doesn't happen -- if I'm feeling centered and my spoon drawer is not overtaxed and the ambient noise isn't too bad, then I seem to do fine.

Date: 2011-12-20 10:14 pm (UTC)From: [identity profile]
Interesting! Apparently, typical hearing people actually *do* have priority on human voices and other important sounds. They can actually direct their attention to specific parts of the sound waves coming in and analyze them separately from the rest of the noise. For hearing words in noise of equal volume, they comprehend greater than 64% of the incoming speech. My test results came back at 44%, indicating that I'm definitely not typical here

"Nevermind" is probably one of the most hated words in the Deaf/Hoh community. Just google "deaf nevermind" and gaze in awe at the plethora of links complaining about the word. Personally, I don't have the "never mind" issue the same way. I'm the one that gets frustrated with not hearing people and gives up, not the other way around. I've always done everything I could to avoid upsetting other people, and have just spent most of my effort guessing about what people were saying.

For me, my CAPD strikes very chaotically, as there are a number of factors that affect comprehension. Feeling centered, awake, and energized will go a long way towards improving my comprehension, as I'm willing and able to put in the extra work needed to understand people. Of course, no matter how good I'm feeling, an environment with bad acoustics can easily knock me down.

Date: 2011-12-20 10:27 pm (UTC)From: [identity profile]
They can actually direct their attention to specific parts of the sound waves coming in and analyze them separately from the rest of the noise.

That sounds like a superpower from my perspective, like you're talking about some kind of RPG creature. >> Do they also get Darkvision and a +3 saving throw vs poison?

"Nevermind" is probably one of the most hated words in the Deaf/Hoh community.

Ooh, thank you...I didn't realize.

Date: 2011-12-20 10:28 pm (UTC)From: [identity profile]
Yeah. Never say "never mind" to a Deaf person. Never ever ever. :) For *exactly* the reasons that it frustrates you.

Date: 2011-12-20 10:38 pm (UTC)From: [identity profile]
I never have, for that very reason, but it never occurred to me that this might be anything other than a personal pet peeve -- it's giving me some context for what I experience and the realization that I'm not alone.

Date: 2011-12-20 10:43 pm (UTC)From: [identity profile]

(That is txt speak/emoticon for the ASL sign meaning "same")
Edited Date: 2011-12-20 10:45 pm (UTC)

Date: 2011-12-21 04:46 am (UTC)From: [identity profile]
So it's more useful to hear the sentence again the exact same way? I would have guessed the opposite. Thanks -- this is useful.

Date: 2011-12-21 07:03 am (UTC)From: [identity profile]
For me, yes. I can't speak for anyone else, but it's kind of like downloading a file -- sometimes I got like, 65 percent of the download and just need the rest, but by saying it again a different way I basically have to start from scratch, plus it leaves a dangling thread in my cognition that's *very* jarring (autie).

Date: 2011-12-21 10:58 am (UTC)From: [identity profile]
I dunno. I know another person with what seem to be the same sorts of issues, and she prefers someone to rephrase and not identically repeat. I guess it varies from person to person.

Date: 2011-12-22 12:49 am (UTC)From: [identity profile]
Okay, that's also useful. :-)

Date: 2011-12-20 09:03 pm (UTC)From: [identity profile]
Additionally, if you happen to blog about any of your hearing experiences, I'd love to read about it. Please link me if you do!


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