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Different kinds of support

May 7, 2009

Lately, I’ve been thinking a lot about why I’ve been running into a slightly different set of day-to-day difficulties. Communication and most social interaction seem to have become harder, to the point that I’m looking more obviously autistic, and a lot of things depending on those skills just haven’t been getting done.

What has changed? The main thing I can identify is a change in types of support, with the big change in living situations. Before, I was living with my parents, and my mom definitely had the gift of gab. (I always wondered why we were so different in that way; now I know.) Even assuming the problem was straight bashfulness and depression, she was very willing and able to take up a lot of the social and communication slack. She helped with organizational stuff, doing business and making appointments for me over the phone, and riding herd so that I mostly got places on time. Neither one of us understood why I needed this kind of help, but it was just treated as part and parcel of the way family members help and complement one another–and, apparently, I contributed enough in other ways that things stayed in balance. We lived physically close to most of the extended family, so there was a ready support network in place.

Did I have visible problems then? You bet. I was on SSI from the time I crashed out of college until I moved here, and rarely went out of the house for several years. Nobody–including me–really understood why I was doing the full hikikomori or geilt (depending on the model you want to use) thing. It was mostly attributed to severe depression, possibly bipolar, for which I was increasingly heavily medicated for lack of better understanding of what was really going on. (It only aggravated the situation.) Only after I moved and went into a profound depression, was I able to see that these mood shifts were clearly related to what was happening in my life, and masses of PTSD. Social stuff was always hard for me, and I drove myself crazy worrying about being such a socially awkward misfit; I was also too ashamed to talk about it very much, even though I considered it one of my biggest problems in life.

At any rate, the problems I was having looked a bit different, because other people were helping me with different aspects at the time. The change in circumstances after I left home caused me to consider that I might really be somewhere on the Autistic Spectrum.

For the last five years or so, I’ve been married and living on the other side of the Atlantic. (Still not always sure how this happened, but the temporary stress was worth it.) Nigel is providing at least as much daily support, but in different ways. His understanding has helped me cope with the depression, and (along with distance) become able to recognize and deal with a continuing emotionally abusive situation in the family. Getting the knowledge and information to help me understand the situation has helped alleviate more of the depression and overt anxiety symptoms, but that leaves the less-addressed communication and social issues out in the open. Nigel just doesn’t have the gift of gab, either, and is not as well suited to filling in my social interface gaps with exuberant extroversion. OTOH, he has a much better understanding of why I have these difficulties in the first place, and that helps in its own way.

The result? I’m running into more hurdles related to the social and communications stuff, and feeling under more pressure to get things “right” interacting with other people. On a very practical level, I just haven’t been able to take care of business involving the phone–and, in a lot of cases, face to face interaction. I haven’t been to the doctor’s since I got back here in December, while being Type 2 diabetic with some other chronic health issues. (I was only able to see one while back in Virginia because a hospice nurse–concerned about my back being out–found one who would see me without insurance, and dealt with them on the phone initially.) I am not at all confident in my ability to carry on a reasonable conversation with the GP on my own, even if he doesn’t try to brush me off or bulldoze me (for extra flustering/shutdown effect). As I’ve mentioned before, poorly managed physical health problems are probably adding to the coping difficulty.

I have been feeling the social isolation more acutely, though I’ve been keeping in touch with some family members online. I like to spend fairly low-key time with other people, but have trouble initiating and keeping up contact. There are several people I am still vaguely in touch with online, but haven’t seen in years in person; I hope they haven’t taken this as a lack of interest. The trips out I can handle are somewhat limited, what with the sensory bombardment in more crowded environments than I’m used to even now, and the pressure of interaction. Interaction is also more difficult–even fairly scripted types, like in shops–since I am coming across as more awkward and peculiar. Basically running in the slipstream of an extreme extrovert, I mostly managed to make a “shy and quiet, but nice enough” impression. The difference makes me feel more awkward still, and leads me to avoid more interaction.

I am still trying to come to grips with not being able to do paid work right now. Once some of the other factors are dealt with, I should be able to get that pet care business up and running. In the meantime, kicking myself over it will not help. Not surprisingly, I was almost relieved to get a clear physical injury at the last job, offering an understandable reason to get out of there. Awkward interaction also made it hard for me to effectively say, “No, I can’t do this without hurting myself”; after getting brushed off while stressed already, it was easier just to sling around 25kg sacks of potatoes, past the point of injury. This kind of pattern is frustrating, and makes me feel stupid, but has kept happening all the same. Now I at least have some idea why.

Not surprisingly, the difference in types of support became more painfully obvious after my mother died, and I realized how much things had changed permanently. Yeah, I anticipated some of this last year, after she first collapsed, but you don’t really feel all the implications until someone is really gone. At least I have not fallen out of touch with the rest of the family, as I was afraid. The “waah, what will I do?” reaction has left me feeling more than a tad selfish, but that seems to be the largest part of grief anyway.

I have also worried some about not seeing many options, should something go wrong. Before, I always knew there was somewhere I could go and be welcome and somewhat understood (at least two places, before my Nana died). Now, I’m not so sure about that, and would have serious trouble working and living on my own. It’s not easy to admit to myself that I really am that thoroughly disabled. This will require some more thought, and not of the “poor poor pitiful me” variety.

In short, some basic needs are not getting met, and I need to figure out how to fix this.

The best I can tell, I would do well to find some other ways of dealing with some of these things, probably with support from some unconsidered places. It’s hard to figure out how and where, though. Therein lies the rub. Being depressed from another wave of grief doesn’t make thing look clearer, right now.

In a way, it was more comfortable when I actually believed that these difficulties were the result of Not Trying Hard Enough. Now I need to figure out how to stop bashing my head against that particular wall, and find some ways around it. Sorry this has been kind of choppy, but disability shame still makes some of the practical difficulties hard to talk about!

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