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Things can get better: mindfulness in action!

December 5, 2009

Earlier tonight, I experienced an excellent example of recovery in action, and thought I’d write about it.

The prelude: our washing machine is on the fritz, so this afternoon Nigel and I headed off on the bus with huge bags of laundry. The most easily accessible laundromat is only about a mile and a half up the A-road we live on, but the bus we climbed on was standing room only. After spending most of the trip trying to balance with a walking stick in one hand and a big blue IKEA bag in the other, I decided to get off a couple of stops early, before I gave in to the temptation to bring my stick into sharp contact with the next person who shoved me!

The laundromat was busy and noisy, with bright, buzzing, flickering fluorescent lights overhead. With the further sensory bombardment from that, I didn’t have a chance of concentrating on a book–but I’d thought to bring my mp3 player along, and the situation was much more tolerable with some help from Operation Ivy and Muddy Waters. 🙂 Still, it got pretty stressful, and after a while some facial tics started up. The laundromat owner gave me some funny looks, but I didn’t feel as self-conscious and ashamed as I have in past, knowing what’s going on with that now.

By the time we got out of there, I was pretty overloaded. Waiting for the bus, I gave the tics freer reign, and used some deep breathing and mindfulness when I noticed I was feeling panicky on the way home. Once there, I lay down a while to relax and get my equilibrium back–and to deal with the shoulder, back, and knee pain from wrangling sacks of clothes. So far, so good.

We were both hungry, and had discussed heading down the street to a delicious Chinese place. I was not sure it was the best idea without more downtime first, but it was 7:30 by then; I was starving and Nigel had gotten a reservation, busy as the place is on a Friday. So, against my better judgment, I wound down for less than half an hour before putting on some better-looking but less comfortable clothes to set out again (knowing I’m really sensitive to the feel of clothing). Not the best idea, in retrospect.

The restaurant was jam-packed and noisy enough that I had to rely heavily on speechreading (tiring!), with two groups celebrating birthdays. The food is usually well worth all the bustle! By the time we’d eaten appetizers and a delicious veggie alternative to crispy duck or lamb–and were ready to order the main course–I’d taken three short trips outside to get away from all the stimuli and try to bring myself down from the sensory overload. I usually also watch their aquarium, but we weren’t sitting close enough to do so without another diner thinking I was staring at her. The facial tics started up again, and my verbal ability and auditory processing went downhill. The pain had become very distracting, as well.

When we were ordering the main course–the first round, at least, since they’ll bring all you want–the waiter misunderstood my order, thanks to two dishes being run together on the menu. (Szechuan beancurd with spring onion and ginger sounded plausible and tasty!) My brain was feeling too scrambled to try to get the order straightened out, so–with a bit of a sinking feeling–I decided that whatever kind of beancurd dish they brought would have to be OK. It was frustrating not being able to speak up very well, and that added a good bit of stress. At least I was aware of why all this was happening, and made some effort not to kick myself over it and really send myself into a downward spiral.

By the time the food came, I had taken another trip outside, but was still twitchy and getting sick to my stomach from overload. The sauce on the dish I got (still not sure what it was!) was offputtingly sweet and sour. The rice had obviously been sitting around a while; I seem to be one of the few non-Asian people in Greater London who orders plain rice instead of fried with a meal, though this place has always served up fresh stuff in past. The always-scrumptious baby pak choi with garlic Nigel and I got to share didn’t even taste good, and I knew it wasn’t the quality of the dish that was the problem. I just couldn’t eat by that point. Out of frustration and disappointment, I almost burst out in tears, but kept a handle on it. I knew I was on the edge of meltdown.

Of course, this started me into the old “Waaah! I’m ruining the meal for everyone else! I just need to straighten up and act like a normal human being instead of some kind of crazy loser! Why do I keep disappointing and embarrassing people I care about in public? He’s probably really mad at me!”, and so on. By now, though, I am able to stop it. It was a more or less reflexive reaction, but I did not believe what the script was insisting I say anymore. I was very aware that it was a script–and did not engage with it*, but just let it peter out on its own.

Nigel was aware of what was going on, and was excellent at dealing with things. He mostly just expressed concern, gave me space to calm myself down, and suggested he get the check. In short, he treated me with respect, and not as though he knew better than I did what must be good for me. I made sure to let him know how much I appreciated that on the walk home!

Yes, I had managed to calm down enough to carry on a halfway reasonable conversation within a few minutes of leaving. When we got home, I got down for better than an hour’s worth of relaxation and meditation. After that, I was kind of worn out from all the earlier stress, but felt enough better to get a cup of cocoa and a snack, and even to watch part of a DVD with Nigel. I did need some pain medication, but the pain levels were probably a quarter what they had been earlier.

This doesn’t sound like a great afternoon and evening overall, but I was very relieved at how well things turned out!

What would have happened even five or six years ago, when I was stuck firmly in the Broke Brain Syndrome model?

First of all, if I’d gone to the laundromat at all, I’d have probably had enough “panic attacks” that I’d have needed to leave abruptly halfway through washing the clothes–possibly after melting down and feeling humiliated by it. For a number of years there, I didn’t get out much, not knowing (a) that my sensory issues are very real, much less (b) how to work around them so that I don’t get so overwhelmed. I’d have been a wreck for the rest of the day after that, and would have had to take rather a lot of anti-anxiety meds.

I did go out to eat with the extended family more frequently, at least a couple of times a month. Every trip was miserable, especially since we tended to pick a “kid-friendly” (i.e., horribly noisy and crowded, brightly lit) restaurant. I would take a hefty dose of anti-anxiety meds before I left home, to try and crank my nervous system down several notches, but would still get overwhelmed–and frequently try to tough it out by taking more antianxiety stuff halfway through the meal. (My nerves would still be twanging, as I got frustrated at feeling goofy and uncoordinated!) At least two times out of three, I would melt down and go cry in the bathroom or outside. A couple of times I ended up just leaving in the middle of the meal and walking home, when it was close enough and I couldn’t take any more.

Some of the other medications I was given made it very difficult indeed to think my way through difficult situations, much less to find better ways of coping with them.

If I had trouble communicating from overload at any point, my parents would try to “help” in ways that just were not helpful at all. In a case like tonight’s, somebody would have sent my food back over my protests, and acted exasperated and/or irritated when I could not eat the replacement food. They’d have already pressed me to come along in the first place, on the basis that trying to do threatening things could only help my “agoraphobia” and “panic disorder”. That left me feeling like I just wasn’t trying to get better, on top of getting very embarassed indeed when I couldn’t maintain iron control over my panicked behavior in public.

They were honestly trying to help, but had no understanding of what was going on–and were, unfortunately, inclined to assume they knew better than I did what might be good for me. They were good people who were, sadly, going along with common ideas (including from professionals) of how they should deal with their “mentally ill” kid. Experiences like this–and something happened every day–just reinforced everyone’s idea that I was crazy.

Yes, earlier tonight I was also dealing with “Oh crap, now Nigel is going to embarrass and snark at me on top of everything else, and just won’t leave me the hell alone!”, even after living with him better than five years now and knowing full well that his approach is very different. That kind of thing stays with a person.

But, for the past few years, I’ve had a better idea of what’s going on, so I can try to work with the way my brain and nervous system in general functions, rather than persisting in banging my head against a wall and looking “sicker” all the time. You may not be able to directly prevent the sensory weirdness, but you can work around troublesome situations–and, very importantly, you can change your reactions to the too-loud, garbled sensory information. If you know what’s going on and apply some mindfulness, it doesn’t have to scare you and make you more upset. You can stop the automatic, hurtful scripts from upsetting you further.

Developing a habit of mindfulness has helped me in a lot of ways, including in developing much better emotional regulation. (I had no idea this was possible before, but it is!) That’s helped me deal with stress and depression, in part by learning how to deal with worrying and other repetitive thoughts like the learned emotional self-abuse scripts. Also, as Jane at Bipolar Recovery has repeately stressed, your brain can learn to be calm, with practice.

Recovery from mental turmoil really is possible. I may have a long way to go still, but I’m already having a lot easier time of things, from applying some mindfulness, kindness, and compassion to myself.

BTW, this is also a good demonstration of why I think behavioral approaches to dealing with autistic “symptoms” are frequently so far off base–and I’m not just talking about ABA, even if it’s a major offender. If you are trying to train someone to get rid of a “symptom” such as hand-flapping without taking into consideration why the person is doing it, that can be really harmful. If you train people to stop their “weird-looking” stress coping techniques without showing them other ways of dealing with the stress, things are not going to be pretty. This should fall under common sense. A lot of behaviors considered “symptoms” come from dealing with sensory issues in the first place–as I have found out, firsthand–yet they are frequently treated as inexplicable. Not pathologizing other people’s behavior when you don’t understand it would also seem to be common sense, but hey. If it’s in the DSM, a “disorder” is going to be cast in terms of observable behavior rather than what might be causing the unusual and sometimes distressing behavior.


* Common approaches to cognitive therapy have backfired with me in past; if I try to counter unhelpful thoughts, that just ends in an argumentative mental loop of its own. Mindfulness had worked much better for me: recognize the intrusive thought for what it is, and just let it go away on its own. What I started doing on my own sounds an awful lot like Mindfulness-based cognitive therapy, which I’m glad is getting some attention, as useful as it’s likely to be for a lot of people.

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