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I feel as though I've reached the point where I feel like I've resolved some of the turmoil I've experienced over the last few months over finding out that I had CAPD. I feel as though I've integrated this into my self-image, have adjusted my behaviors to better manage my issues, and am now moving on...

A lot of my anxiety and difficulty in integrating this knowledge into myself revolves around the fact that this condition has been with me since birth, but I've never understood it.

I don't know how many of you have had things like this, but since this is basically my second such lifelong condition, I have noticed certain correlations between the two. When you have a condition like this that is systemic and affects a great deal of your perception of reality, you start out by not even realizing that you have a problem. You think everyone is the same as you. Growing up, if I had trouble and others did not, I took this to mean that I was doing something wrong, not that there might be something substantially different about me from the average person. My parents, and many others, would often attribute my difficulties to a lack of attention, a lack of consideration, or other personal failings that I ought to have the power to resolve.

So, I basically grew up thinking that when I couldn't understand someone, it wasn't a hearing problem... I was just stupid. If I didn't recognize someone... it wasn't a prosopagnosia issue... I was just stupid. I believe strongly that this contributed greatly to a poor self-image, an image of myself as dumb and incapable.

By the time I hit high school, I was starting to recognize that there was something different about the way I perceived faces, and a few years later, started to recognize that I had some strange audio processing issues. But in both cases it would take years for me to truly comprehend what was taking place and all of the implications of it to my life. In the case of being face blind, it took years to correct my self-image, and I imagine I have more self-image correction to do with CAPD as well.

The other thing that makes acceptance of CAPD so challenging is that it requires me to re-evaluate many social situations in a new light. Having CAPD and prosopagnosia creates quite the rift between oneself and other people. Both of these resulted in my being unable to participate in many ordinary social customs. For example, when you encounter someone at a party, for example, you are supposed to greet them warmly as a way to reinforce your declaration of friendship, and proceed to have a conversation. But for me, I didn't recognize people well, so I couldn't greet them warmly. I stared dumbly at them wondering who the hell they were. And if we tried to talk, I couldn't understand what they were saying and just got confused.

There are many other social customs that I could not participate in, but the general result is that I was disconnected from most social situations as a kid and could not figure out how to participate, because I was fighting against barriers that I scarcely understood. My whole system of evaluating what was and wasn't good for me was based around this sort of blind attempt to analyze my problems. I could look at something and subconsciously recognize it as related to things that have made me uncomfortable in the past, and feel uncomfortable about something, but I couldn't understand why. Examples include things like watching movies where I couldn't recognize the characters, going to large gatherings and parties for family or for school, going to particularly noisy restaurants, making phone calls to people, etc. All of it felt uncomfortable without me understanding why, and when people asked me about it, I could only rationalize my feelings... I couldn't give a real answer.

Now that I know that I have Prospagnosia and CAPD, I am able to re-evaluate many situations. When I go to the DMV and feel very nervous and anxious, I now know it is because I'm struggling to understand what the clerk is saying. When I go to a party, I know that I'm not feeling anxious because I dislike social situations or the people there or whatever. I'm just struggling to hear and recognize people. I'm waiting for that emotional blow when I fail to live up to someone's expectations of me and see that horrible look of disappointment on their face when I don't recognize them or respond to them in a strange way that indicates I didn't understand what they said. I understand now why it is that I feel so stupid when listening to people talk about deep technical information, yet have consistently been highly regarded in terms of my technical skill. So many situations like these that previously I could not understand and now I do.

It takes a while to get used to that. It's like those magic eye puzzles where you suddenly see the thing there whereas before all you saw was visual static. Is it really there? Is this your brain playing tricks on you? Confirmation bias regarding everything as suddenly part of this one big thing? And exactly what is it you're seeing, anyways?

That leads to the third thing that has been difficult: Understanding the extent of the problem. Basically, I just found out that I've had a problem my whole life, but didn't realize it. I used to think I was "typical," and now find out that I am not. This means I have to reconstruct a new mental image of what is "typical" and how far away from that I am. I have a hearing issue, sure... but how bad is it? Is this a "really bad" issue, or a relatively minor one? Clearly, I could measure my experiences against reports of other people and their experiences, but even making such a comparison requires gathering information about those experiences in the first place, which is challenging in and of itself. How do you stop and realize that the reason you're having trouble recognizing someone is because you're face blind? How do you stop and realize that the reason you can't understand someone's speech is because you have CAPD? When you've spent your whole life ignoring these moments as normal and typical? How do you even notice what situations they're happening in? It's quite a challenge, actually.

At this point, I've gathered enough information through self-observation and questions to peers about their observations of me to recognize that my issues are actually relatively minor. Bad enough to cause a lot of minor social hiccups and seemingly random communication difficulties... But not bad enough to completely eject me from society or to put me as a complete social outcast. I've found my little niches here and there, and eventually figured out how to satisfy my intensely extroverted personality despite the issues I've had.

I suspect that as I learn better coping skills for my issues, I will continue to improve my ability to be social with other people. As an example, I remember having so much trouble in my first few jobs. It literally took me nearly a year to be able to fully recognize all the people around me and know how to communicate with them. The past two jobs, I've managed to do the same thing in just a few months, by using better coping skills than I've used in the past. I'm even starting to work on improving my comprehension levels in meetings so that I can more effectively keep up when people launch into deep technical monologues and I struggle to take it all in.

Regarding CAPD, I feel better able to be in control of my situation and my ability to comprehend people. I don't get those feelings of unexplained discomfort and embarrassment that I used to get all the time. That is... I still feel those feelings, but they're no longer unexplained. I know what's going on. And with that knowledge, I am more capable of reacting and communicating than I ever was. I am finding this very helpful towards feeling more part of conversations and groups, feeling better able to smooth out social bumps where my issues cause people frustration, and otherwise am just more effective at functioning in the world.

Date: 2012-01-04 01:04 am (UTC)From: [identity profile] alicephilippa.livejournal.com
I understand what you are saying here. For years I thought I had had ey co-ordination problems and that with enough practice I'd get better at hitting balls, shuttlecocks and the like, as well as catching. No matter now much practice and coaching I had things got to a certain point and no further. I just put it down to being crap.

The same with magic eye puzzles, I logically knew how they worked but I could never get them to work. When I started to play with software for 3D stuff I suddenly had a revelation, it's not because I'm crap but because I suffer from amblyopia and there is a visual processing deficiency in the brain that affects images seen by my left eye, and as a result my 3D vision is all but non-existent.

Your recent posts on CAPD has made me wonder, and want to find out more about it as so much resonates with me and the way my own hearing functions (aside from the tinnitus &mdash yay for rifle shooting in my teens early 20s without hearing protection). So I really do appreciate me being allowed to see this side of things.

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