Friday, September 19, 2014

How to cope, how to fit

Writing I needed to put somewhere even if it is highly personal - what writing I do isn't?

Thoughts after kids museum, synagogue on first truly nice low dewpoint day of season

My brain is full. So, so full. Blah. I am trying not to give into the depressed, fatigued thoughts. I'm doing too much and putting my body into a state of assault and once I have gotten a glimpse of what its like to live without feeling under attack its so much harder to accept it when it comes back, so hard to think of it as something you're actually trying to work towards.

 I don't want to be alone. I want to be in the world. But not under those terms! I had three months of.. my body being under attack. How in God's earth can I justify continuing to put my body under attack and into a fight or flight response by going into new buildings when I FINALLY have the chance of actually feeling calm because the humidity has finally gone away? But if I can't find a way to fill my time and get social connections with people in environments that are safe for me, how on earth can I justify not doing it? The two ends are at such odds with each other. I have two absolutely essential basic human needs that are at completely diametrically opposed odds to each other. I have the need for physical safety and the emotional safety that comes with feeling physically safe, and I have the need for emotional and social connection to others. But 98% of social connection happens in physical environments I don't feel safe in, and I've tried the Yankee work ethic of "pulling yourself up by your bootstraps" and making myself do it anyway, but I just don't think it's worth it.

If I had absolutely nothing else in my life, and if I was going to be miserable physically no matter what I did, then okay what's a little extra physical pain and discomfort, what's a little extra fight or flight anxiety response thrown onto a life already riddled with it. In the summer, with the humidity, it was more like "Well, I'm going to be miserable anyway, so..."

But to take a day where the dewpoint was finally, for the love of God, finally back in the TWENTIES for the first time in 3 months, a day I had waited and prayed for and cursed whatever being that existed for not coming quickly enough, a summer where I had suffered nearly every single day the feeling of simply not feeling like I could breathe *every single time I walked outside*, where I obsessively watched dewpoints every day praying for the day it would get below 50 and then below 40, and to finally GET that day, and to wake up for no good reason laughing and dancing and feeling like my body could actually MOVE for the first time in a long time, feeling like a human being again, feeling like I had somehow reconnected with the joy of life, even before I had walked outside or checked the weather to see what the dewpoint actually was, and then to walk outside, and the feeling of ....  I didn't even have to describe it, I didn't have to put words to it, I didn't have to dance or scream or express it like I usually do. It was just a feeling of everything being right in the world, a feeling of "OH MY GOD SO THIS IS WHAT IT FEELS LIKE TO ACTUALLY WANT TO BE ALIVE" a calmness, a vibrancy, a joy in my heart, a pure joy, but mixed with the overwhelming, agitating thought that in 20 minutes I was supposed to be at the children's museum to volunteer, and I knew the building would make me sick, and Omg I finally got my body back after three months of struggling and I'm supposed to do something that will make me lose it again? And so I took that walk on the Western Prom, for 10 minutes, and it was better than nothing. And I went to the children's museum to volunteer because I am nothing if not responsible, or I try to be. But I wasn't engaged, and my thoughts overwhelmed me, and I had to sit out for the first half as tears rolled down my face. Quietly, at least, for once. I did manage to get engaged in the second half. But then for what?  The 30 minutes of pacing back and forth in the public market, talking out loud to myself , trying to convince myself that it had been worth it, trying to pick myself up from the depression and anxiety that settled as soon as I set foot in the children's museum?

This story is too tired and old. It was one thing to have to fight, every. single. freaking day of the summer to get myself to function, to walk, and talk, and eat and do whatever the hell I was supposed to when battling against an enemy that made my body nonfunctional (you can't escape the weather). But to deliberately put myself into situations that will provoke that response when I have a chance of happiness, of joy, of contentment if I don't? It's insane. For deep emotional connections, I would. And it's very possible that somewhere down the line these things, volunteering or whatever, could turn into that. But it's not guaranteed, it might take a long time, and my body cannot sustain the adrenaline response needed to tolerate these environments. My mind and self-esteem and self-concept cannot tolerate the blows that come from having no choice but to display my anxiety, agitation and lack of what would be considered typical functioning, ie meltdowns of some sort, *every single time* I do something new or difficult. While I am grateful for the open mindedness and acceptance of a town who thinks nothing of someone pacing back and forth talking to themselves, I am tired of being *that person.* I want to spread joy and love and happiness, not agitation and anxiety. Forcing myself into environments where I don't fit .... if I truly had no other way to gain some sort of connection with the world I would do it. But if there is any way at all that I can find the connection without having to put my body under attack so regularly, and gain compliments and feedback about how good I am to try new things, if I could find a way to validate myself with what I have and am without ..... trying to meet that Yankee worth ethic of you're not worth anything if you're not killing yourself to achieve new things all the time... What good does the world get from me, and I from the world, if I feel under attack?

On the one hand, I'm desperate to feel useful to other people, desperate to feel anything other than the pain in my own body. And to do that I need to go to where the people are. But I just so want so badly to feel comfortable in my own body, and I had that for 15 glorious minutes when I left my apartment today, and then I gave it up in service of being more like other people, and I have no idea what the right choice is . I suppose it might change from day to day. But when you commit to something, you have to commit. They don't let you decide last minute. So I don't know what the answer is. Somehow I will have to re imagine the answer every day I suppose.

I thankfully was engaged in good conversation when I walked into the synagogue, and found myself far more engaged than usual for the first two thirds of the service, even managing to stand when others stood and for once not feeling like it hurt so much to stand and sit and move, feeling the feeling of the energy around me, feeling beautifully connected. Feeling connected at the beginning of anything tends to help me stay connected for the rest. But then there was a part where I felt less engaged and my thoughts took over, that evil monster always lurking in wait, and I had no power to resist them, and my gaze fell away, and my body felt heavy again, and all of a sudden when it was time to stand the idea of standing, of moving just felt impossible. I felt like a heavy lead vest unable to move. And the only thing that had changed was my thoughts. If I didn't already think that most of my physical issues were anxiety related, well, here's more evidence. But the physical pain is still real just because it's somatoform. And I am out of ideas for managing the anxiety, other than respecting my body's limits and not trying to push it as much. Fight or flight responses create cortisol which destroys my memory of things I do anyway.

I cannot stand to be isolated, and I cannot stand to put myself under attack, whether the attack is from sensory information overload, chemicals, or just extreme anxiety over whether or not I am safe from those things, they all create the same response in the body.

I'll probably go to my grave trying to figure this out, so all I can do right now is vent about it, I suppose, and hope a solution comes. At least the synagogue, so far, is a safe place. But once I lost control of my thoughts, I started to get self conscious, and the quality of my conversations went down the tubes, and I couldn't get anything out of them. But they are loving people, and once I calm down enough, I hope to remember the quality of the engagement that was there but obscured to me by my depressive and oh so frustrating thoughts. My logical brain says "There's love in their words, in their tone." My emotional brain said... things I don't want to repeat and refused to listen to the love around me. When I calm my emotions down, maybe I can access that love belatedly. This is why I write everything down, so I have a hope of remembering it exists. Someone needs to tell my brain that everything is not a life or death situation. It hasn't seemed to get the memo.

Something related from Facebook I wanted to save

........... I am so sorry the boss does not value your traits, and I so much know what you mean by the sentence "I wish I had never learned to converse at all." I keep thinking I was happier before I was 13, happier before I had any social awareness at all. Trying to get back to the blissfully unjudged self. Maybe THAT'S why I keep remembering childhood so nostalgically. I would keep saying to myself, how can I be so happy thinking of being a kid, driving through Cumberland, etc? Nothing good happened! Then I realize just now I am using a very NT definition of "nothing good happened." Did I have friends and anything the world would consider normal? No. But was I happy, lost inside my head and made up worlds? *I honestly can't remember* but my childhood nostalgia and the fact that I don't remember having depression and anxiety until I started to become aware of the world around me at age 13 would seem to suggest yes. So happiness then is not a function of following social rules, but of following your OWN rules to happiness. Why then is society so quick to label those who engage in self care as selfish? When we take care of ourselves, we are then free to take care of others... but one has to come before the other.

But the reality is too that at a certain age you develop a need for social interaction and emotional connection of some sort, so you have to learn just enough rules to achieve that. Past that, fitting in starts to seem somewhat pointless, especially if your income isn't dependent on it. But old habits die hard, and having spent 15 years trying to figure out how to fit in, I am finding it hard to stop.


Saturday, September 6, 2014


Tonight,  I gave a speech on life with autism at a local synagogue.

My favorite comment after it was the person who said "You have such love for the topic." I was so happy that someone could see who I was beyond the topic of the speech - see me, see my love, my passion, my self that just happens to inhabit an autistic body.

I spent a lot of time tonight contemplating how to validate myself and how to have different ways to understand my experience of things other than the quantity and quality of feedback I get from people.

Not being able to type much has maybe made this more of a necessity but is driving me crazy just the same!

That said, I got at least a dozen comments and conversations after the speech. We stayed at the oneg after to 10pm, literally to 10pm. Usually everyone's gone by around 9. As lovely as that was, like I said, I found myself contemplating how not to judge the quality of the experience by the feedback, which is new for me.

There were about 35 people, 12 minute speech, about six questions after.

It all came together very nicely, and it was an arena in which I had superb confidence and mastery of material, so it felt very enjoyable to speak and answer questions. I rarely have that much confidence. It was so refreshing  to know exactly what to say.

To all the people who asked "Are you nervous" before.. No, I was nervous about my physical body and how well it would respond. But I was not nervous emotionally. I am nervous in everyday conversation. But I can't possibly be nervous presenting about autism because I know it like the back of my hand.

There were questions about savants, removing Asperger's from the DSM, non verbal learning disability, the nature of sensory and nonverbal language difficulties, what kind of services, accomodations would help, etc.

I met an OT who works in Portland schools and may want me to speak there, and a dozen other interesting people.

So, yeah. I think it went pretty well. A lot to process though.

I don't want to rest in the identity of disability. I want to find ways to access joy, love, fun with other people. I had no way of accessing the social world other than expressions about me, about pain, about disability, they were the only access points I had. But I am starting to see and feel the need to have ways of interacting with others that are FUN, that are light and easy. I just have NO idea how to do this, other than improv, but the random walk I had last night with a new friend put a hell of a lot more joy in my heart than talking about autism for 2 hrs, and I want more of the former. I'll take the latter if it's the only social interaction I can get, but it's not what I want. I have to find a way to acknowledge my disability and limitations while not letting them overrun and define me as they have been doing. My sensory and physical body limitations make this harder but not impossible. Where to start? I am hoping by validating myself and finding ways to be silly with people but as always I find myself impatient. I need to slow down and trust in the universe's power to allow me to access what I need when I calm down enough to see it right in front of me.

Alternately, if anyone wants to come over and sing 60s music with me, feel free. =)