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

Speech



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. =)

Wednesday, August 27, 2014

Improv is the Answer


Thoughts on the improv class/fundraiser I was lucky enough to go to at  the CTV building downtown. Improv is fun =)

It seems to me that improv is a space in which there are no rules, so it allows those of us with enormous social anxiety to actually feel free to be ourselves, to feel safe to be ourselves, and to feel safe enough to actually feel emotional connection to others. I have known this since I first took improv in summer camp as a kid, but never had the opportunity to practice it. In my life, the only opportunity for social interaction and connection with others has been around the idea of disability - my talks on or discussions on autism. I had virtually no social interaction before discovering that label and gaining some confidence from there. Other than that I have no outlet. Writing and speaking about the pain in my life has not been particularly productive or useful. I lamented to someone on the phone the other day that if I could just find a way to have superficial but meaningful, easy, silly, joyful conversations with others, without using so much damn energy, that I'd be happy. I asked her, "What would you call that state?" She said "I'd call it having fun." 

Turns out I was right, and improv is the answer, if I can only figure out how to find a suitable environment. I had a horrible day before, but I have not been that happy for that long in years. I am so thankful for the opportunity to show myself that happiness and connection does exist in me, but it takes the right environment to bring it out. It takes patience and persistence to keep seeking it too I guess.

I was so thankful for the woman who took me in and extended a warm, positive energy to me, talked with me and made me feel included. I was so happy that people greeted me so warmly when  I walked in. To have people greet you by name so happily! I could get lost in the positive energy of others, and do, the few times I have the opportunity. 

To be in a room with people who have such open, warm energy, is like heaven on earth. To be in a space where there are no social rules, and to get to express all the tremendous energy that is inside me in a fun, silly, connected way is heaven. To see the smile on other people's face, to laugh with them, to engage in any form of interaction where energy is being exchanged, without the terrifying thoughts in my head of OMG I'M DOING THIS WRONG  is to be actually able to take in positive energy from others.


I have pain in my wrist so I can't type longer, but I am wanting to hold on to this feeling. To remember it exists. Please help me remember it exists. Please help me try to get it again. It is so much healthier than depression.

Monday, August 18, 2014

thoughts on depression

I do not feel like this every day but I do sometimes, at least a couple times per week and to a lesser degree more often, I got some good feedback on it on FB so am posting here for the next time I  feel this way and need to express it This is from last Thursday

getting back to apt was pure torture emotionally. brain gets too tired to control negative thoughts. the whole world falls apart in my brain. i walk so slowly each step weighted down with pure dread. i pace outside the building delaying going in, delaying doing anything. my brain simply does not want to be alive, and it puts off everything, trying to find a corner to hide in, but there is none. bursting to the seam with depressive thinking, crying, trying to find a meaning for suffering when there is none. the challenge of getting to east end apparently incited an adrenaline response that kept the negative thoughts away. walking to the west end is too damn EASY physically, yet time consuming, so my thoughts feel free to run loose and wreak havoc on my body and mind while i walk what sometimes feels like a death march, feelings of dread pouring out of my body, the source events and experiences that were years ago but whose effects and images continue to live and be felt in my body at every waking moment unless distracted. Crying while walking up Congress has happened more than once. I hate the feeling of yelling at myself to move, to walk, when the feelings of dread are so heavy that it feels like my body is made out of stone and I cannot move, I am paralyzed, trapped in place, trapped in my head, unable to reach out.... until someone happens by and engages me in a conversation, and I am myself again, connected , focused, until they leave, and I fall apart again. Seriously, can I exchange this brain for a new one? I think I got a faulty one. And I can't find the fix for it. The repair shop is closed and moved to China... there, somewhere, but not accessible.

Eleven hours out would probably be a lot for anybody... but it was what happened that wrecked me so much.... What I managed to be distracted by for some of today but then all the time I managed to be distracted by it came back to bite me in the ass like a bad rebound effect from an ADD medication... all the time I felt being okay came back to bite me in the ass and the fall was that much worse. How I can be so hard on myself for the way I am socially when I had as much positive social reinforcement as I did today is unexplainable, un-understandable, the result of a brain so stuck in past trauma that is totally not capable of moving on. The distress I felt over the reaction to certain chemical elements of the thing I tried earlier, the panic, it just wasn't fun. It just wasn't fun. I don't feel the need I guess to say more. Or have the words at the moment. Or want to go there emotionally. It was just fighting a war all day and I am tired of waging war against my body. I am tired of waging war against my body. I am tired of being stuck in a body that malfunctions so badly. I am tired of feeling like I am shut out from other people's lives. I try to tell myself, you can talk to people just fine, you just have a different way of doing it. I give myself example after example. Even tonight I ... got into conversations with two guys, both older men, since that seems to be the only type I can converse with, even after the open mic ended... and I got plenty of good feedback in the open mic... but still watching people converse with each other sends in me an endless loop of you're not doing it right, an endless loop of you're missing out. which, according to my new aspie friend from group, is true. I am missing out on 80% of communication due to not being able to read nonverbal communication. When I say I feel shut out, emotionally isolated, there is a very scientific, biological reason for this. It is because I literally AM shut out from their communication, or most of it. I try to compensate with words. I am the master of words. But words feel so empty. People my age don't communicate like I do. I can't make myself be okay with that. I can converse fine with older people. But that is problematic. I can't tell if people are just merely tolerating me and talking to me out of pity, or if they actually want to. I am thankful to talk to them about autism or analyze myself with a receptive audience but I want something more. What if the only thing I can have conversations with people about turns out to be autism and psychology related things? Most people get burned out on deep conversations. I can't think of anything light and airy to talk about. Music is the only other interest I have, but of course very specific music. I want to be casual and find a way to be with people that does not include analyzing my emotions, because most people don't want to do that. But yeah. I haven't found it yet.

I want to find a way to be at peace with my body and not scared to death of it. The dread I experience is the dread of feeling. The dread of physically feeling the way my body feels. It can't take it anymore, sometimes. It just feels too much. The tension in my body, the pressure in my head, the pressure of being alive. The physical, sensory, emotional pain that I feel in my body. It is too much sometimes. My body rebels against existing, but there is nowhere to go ,no way to escape an enemy that is literally your own body. And when I can't connect to music, when even music feels overwhelming, the one and only outlet I have.... the terror is too great. I need an outlet. The terror of feeling too disconnected to even connect to music. I can't go back there again. The fear of not feeling, almost. Or of feeling, but of only feeling the disconnect. Of only feeling the isolation. What was the 90s song.... "Yeah, I bleed just to know I'm alive..." Iris? I haven't heard that in ages. It's not knowing that I'm alive that I have trouble with ... It's knowing that I exist in other people's minds, knowing that there is anything in this world other than my mind, my awareness of myself, my awarneness of my pain. I have to fight so hard to find a feeling of being aware of other people or something other than me. That is a level of isolation that I just can't stand sometimes.

How do you know you exist in other people's minds? Is that some kind of theory of mind or object permenance developmental stage that most people achieve by age 6? Why am I stuck there? If other people with autism have trouble reading social cues, and are as emotionally shut out as I am, why are they not as desperate as I am? Are they, and I just don't know it? How will I live a life continuing to be shut out from others' emotions? It is just too painful to bear sometimes. It may not be that they are not emotional enough, I am finding, although often it is. It is that I cannot read their energy or their feelings, their cues, and connect to it. And it is my brain keeping me in a perpetual state of danger and isolation due to the feelings of both physical bad-ness and past emotional trauma.

I am tired of scanning the environment for threats and feeling outside, behind a glass, even when I am actually participating.

Sunday, August 17, 2014

Seeing Your Strengths

I need to find a way to understand and use my strengths. I need to focus less on what I can't do.

This I just realized after having spent the last 90 minutes on a phone call with an online friend who was trying to get me to see my strengths. I have very little idea of how other people live, because I've never known anything other than my brain. She compliments me on my ability to figure out and assess my problems so well, and my ability to figure out what I need. The problem I have is in taking action to get what I need due to anxiety about it not being possible to get. Anxiety about whether my needs will be met. I am surprised at her compliments and have trouble imagining that most people aren't capable of the level of self-analysis that is for me there all the time without any effort.
 
 I am focused on my weaknesses to the exclusion of all else, so I am not able to use my strengths for anything. To figure out how to use my strengths, I would first need to figure out what they are, and this would require something I was always taught was at the height of selfishness - asking people to give me feedback, sometimes more than once, about the parts of me that are positive, and why, and to tell me enough times until I understand these things just as intimately as I understand my own faults (the knowledge of the latter which has been beat into me so many times it's a running tape in my head whenever I try to do the simplest of things).          

She says that it would be a shame to waste such a genuine, honest caring spirit and try to bring it down to the level of everyone else just because that is what the majority is.

I try to ask her how I help other people because this is not something I have much experience with. She says I inspire her to think about the way she's living her life and what she could do better or differently for more emotional richness, in a way she never has before. So is that what it is? I inspire people to think?
She also tells me that my genuineness inspires happy emotions in others, because they can sense and feel my happiness, my other emotions and it makes them feel, which they like. Some, anyway. A certain subset. I am so used to feeling like a burden on other people that it is like an exercise in brain gymnastics to even perceive that this could be true, but a worthy one.

Many people when I was in college would be drawn to me to have intense conversations about the way they felt about something - and would tell me "Gee, I never talk about this with anyone," and they just met me - but it would never turn into a friendship, and for that I blamed myself. Is it possible that they just preferred superficiality? Is it possible that I have a gift to help others be themselves and feel comfortable expressing themselves? One that might not lend itself well to the kind of superficial friendship that the world seems so enamored of, but that could be useful for those who really need it and are open to it?

I am different, but the only possible labels society gives me to think about my differences are in terms of disability. Autism, depression, anxiety, whatever. But what if we labeled what people did right as much as we label what they did wrong? Caring, genuine, perceptive, insightful, these are all valid things... that we have no real term for. I don't really know what you *mean* when you call me this, because I have not run into an awful lot of people like this. I have been given no reason to think these traits are anything special or particularly useful. But what if I did?

What if they gave me a label of what I did right? If they gave me a label of what I did right, I could rise up to meet that and all the negatives wouldn't matter so much.

I have as much trouble being superficial as other people do being genuine, but she says not to waste your gift of being genuine by being superficial. The world has enough superficial people already. It doesn't need one more. It needs someone genuine, even if it doesn't know that yet.

What I need more than anything is people who will remind me of my own strengths.

Disability is a seductive identity, especially for someone who has never belonged to any other group. Labels of disability are helpful to a point, and the point is when it blinds you to all knowledge that you could ever be something more. Balance is hard to achieve.

Saturday, August 9, 2014

Aspie group today

Ramblings from FB about the Aspie group I went to today and my evening

I probably have very little typing ability left before my hand starts bothering me again, so I should get this out while I still can.

I managed to sit and do nothing for a while, which is very unlike me. Let my thoughts run thru my head without judging or reacting to them. YAY! And read 2 chapter of a good book. I would have done more, but my back was getting sore and I could not find a good position to be in. Oh well, Patience I suppose, only way to go if you can get it.

I had a very full day!

I was with Rob and others from noon to 9pm. I went to the Aspie group for only the second time in seven years. I did markedly better this time than last, but the different structure probably helped a lot too. An engaging and intelligent guy I had never met did a presentation on Aspie social cues and problems with that subject. I found it hard to listen and sit still at first, or keep my body calm enough to listen, but then I wandered to the other side of the room, sat there and found that now I could actually understand the words. I then did a reading of one of my favorite essays on being Aspie that is published in the book I wrote. All those weeks of open mic night paid off, because I was perfectly able to read the essay without any preparation or much anxiety, used to delivering essays to an audience whose reaction I was never sure of and Thank God usually couldn't SEE due to the lighting on stage... Helps with stage presence. Ha. I felt strangely natural talking in front of a group,  actually, far more natural than usual, far more confident than usual. I love giving presentations because I can be calm enough to consider things like tone of voice and how the words are coming across. Normal interactions you have to REACT SO FAST and so much anxiety cannot pay attn to tone of voice. Reading an essay though? No anxiety because no worry about social rules. You have the floor. No anxiously trying to figure out when to respond, what they're thinking, what to say, OMG WHAT ARE THEY THINKING, when am I supposed to talk, what did they mean by that? You are just reading, and it is such an easy form of social communication for me, such a natural, delightful, almost luxurious thing for me to do. I can actually focus on trying to make my tone of voice fit what I am reading. Or it has been lately at least. I pray for more opportunities to do so.

There were a couple more outgoing members of the group present and I was thankful for this, as the group does usually tend towards the introverted side. There were actually four women when I walked in and I thought I was seeing things. There is usually just one or two. Half the people when I walked in were women. Knock me over with a feather, as they say.

While the place was not easy physically in terms of sensory reactions, it was tolerable as long as I was engaged, which fortunately I was and remained so for the 3 hours I was there. So that was a win.

I was thankful for time to decompress after. Got groceries. Walked with Rob on the Western Prom. And managed to sit and do nothing when I got home instead of intensely trying to cover up and offload my emotions. Sanity, if that is you knocking on the door, please make yourself at home and stay a while. =)


But the best part of the day actually came after Rob and I came back from our walk on the western prom. Lingering by the door and talking, we saw an older woman walking by. She said "I don't know how I'm going to make it home, they pumped me up with drugs," to no one in particular. I noticed the wristband on her wrist and was mindful of being 2 blocks from the hospital. Always eager to engage someone, I asked her "Did you just come from the hospital?" Indeed, she had come by ambulance earlier, and had no ride home. She felt like she couldn't walk any further. Instantly sympathetic, and feeling perfectly safe engaging with her, I asked her if she had money for a cab. She didn't.  I asked her where she lived and it was less than a mile away.

Always on the lookout for opportunities to make the world a better place for someone other than me, I told her I'd be glad to give her $5 for a cab, because I knew it wouldn't cost more than that for a mile. She was so grateful. She was all talking about how there are good people in the world and how thankful she was, and I just ... was taking in her energy and so happy for it, because honestly, it is the gritty, real, down to earth, non-pretentious non-perfect people that make me feel instantly comfortable, and I almost never find them. I was so happy to be able to help someone. My money and phone was upstairs, but R and I split the $5 to pay her and R used his phone to call a cab for her, which came within 5 minutes. She was a lovely, enthusiastic, vibrant personality experiencing a hard time, and I just felt... I felt like life was worth living having helped this other person, like all of my anxieties and fears for the night ahead melted away in the face of this one single undeniable fact - SOMEONE ELSE WAS GENUINELY GLAD I EXISTED, that she had met me , and that I, of all people, who am so sick and tired of depending on other people to help me, was finally able to make the load easier for someone else tonight.

Yea. I gotta find me some volunteer opps that work w/ my sensitivities cus I think helping others is only way I'll ever find a meaning in life. I WANT a meaning in life. If I can find a way to get over my body's limitations.... I will certainly do so.

Monday, August 4, 2014

On Details Versus Big Picture, and Transitions

On Details Versus Big Picture

I just had the most lovely couple hours, adjusting to my new apartment, and doing nothing but doing nothing in a remarkably pleasant way. I should add I almost never do nothing. Ever. Doing nothing is usually very scary, but was surprisingly pleasant today. Usually I am so bombarded by sensory and emotional stimuli from the world that I have to find a way to DO stuff, other stuff, other more desirable stuff but stuff nonetheless, just so I can drown out the negative stimuli. It gets to be a war in my body, negative stimuli comes in, I try to balance it with an equal amount of output, a war of input and output ensues. I did not quite realize that one of the reasons I think I am such an intense person is that because I am so sensitive to sensory, emotional and physical stimuli, and because I take in SO MUCH, the only way I can regulate myself (which I do quite unconsciously) is to create an equal stream of output. The reason I talk, write, emote and express so much, probably even the reason my body moves and fidgets so much, is to create a stream of output equal to the input so as to be balanced and regulated.

So, all that to say that doing nothing is a luxury I have hardly ever experienced. I am never relaxed enough to do nothing. The thing is, if the environment around you is not completely calm and okay, you are agitated no matter what is happening, and when negative stimuli is coming in, you have to be DOING SOMETHING to overcome that feeling. So doing nothing to overcome it and sitting still or not being active feels like torture most of the time.

But the last three days since I have moved into this apartment, I have found myself doing nothing for the longest stretches of time and not having it be unpleasant. It's an extremely weird, foreign, strange feeling that I can't quite figure out what to think about. Pleasantries like "I'm glad you're enjoying your apartment," or "I'm glad it is going so well" don't seem to describe it in the least, and frustrate me. Am I enjoying it? What is this feeling? How can I describe this feeling when I am hardly aware of one? How can I exist if I am not feeling anything? That is what I have been thinking lately, and it is so weird. I am used to extremes of emotion. How do I even know how to describe what I am guessing is a feeling of peace or calm? Will it last? Can I  trust it? Will it happen again? These thoughts I keep thinking, among others.

I wrote the following about the last few hours tonight.

I can hardly remember what ive been doing. I got distracted so pleasantly by the Sara Evans CD that was playing on my CD player, which I just found today.

I sat on the bed caught in the rapture of  the music, the beauty of her voice,  the feeling of love that came over me. I listened to every CD I found earlier twice... lost in the wonder of the sound of their voice. Eventually, I decided to make dinner... ground beef... didnt come out great but it didnt matter because the phil vassar cd was completely entrancing me in a kind of peaceful positive emotion I have rarely experienced. I am so used to  emotions being big... extreme... I can barely recognize peace or happiness if it's  not big huge joy. Nate says when I get happy I get so happy he couldn't even imagine. To be released from the pressure of always having to be THAT happy, though, to be free to feel happiness on a more normal scale... it feels weird but good! I sat on the bed, having my usual resistance to eating but knowing I should, feeding myself one piece of beef at a time,and for once focusing more on the buttery smooth amazing sound of Phil Vassar's voice than the feeling of the food in my mouth and stomach. I had the idea that I'd clear off the side table and put some of my stuff I unpacked on it, and acually got excited about it, but after I went to put my dish away I felt tired and went to sit on the bed and listen to the music some more. Then, spontaneously, I grabbed the book that was on the bed, lied down and started to read.

Which might not sound like anything special except for I never do anything spontaneous, I haven't been relaxed enough and calm enough to focus on reading a book in two months and I never do anything without a careful calculation of all the possible risks and benefits involved, a careful planning out of every aspect of it, and without first reassuring myself of all the things I will do after it and reassuring myself that whatever I did before it went okay and Oh before you do that can you please solve this problem, and that problem , and find a solution world peace while you're at it? ..... there is so much damn THINKING involved in switching between  activities, and my life in general, no wonder I have trouble with transitions. That's a big thing in autism - trouble with transitions. I couldn't tell you why, but I could definitely tell you I had that particular trait.

For once having done several activities today with almost no transition, and no thinking needed, I can start to understand why most transitions are so fraught. When the world feels so dangerous with sensory hypersensitivity and every other sort of sensitivity that exists, you are preparing yourself for war every time there is a transition, even if you're not consciously aware of it. You don't know what is coming next and you have to get your battle on. Even if it's something you've done a million times, it's not likely to be something without danger, because let's face it, almost everything we do out in the world has a barrage of sensory information and feels like overload even if it's something we like - and it's usually not. Our minds are very good at focusing on the small details and terrible at the big picture. So, focusing from one detailed activity to another means a lot of change in focus, and a lot of anxiety. When you FINALLY get your mind focused on doing something, having to stop and go through all that again to do another activity can feel like murder, so no wonder we like to hyper focus on one activity for a long period of time.

There was this analogy in this book I spontaneously started reading tonight that I really liked. It said, "Most people live their lives knowing that all the frames of action, all the details of their life, fit into a big movie frame. We can put the frames together and watch the movie. People with autism can only see the individual movie frames and not the movie. They can't run the projector. They see only fragemented information, bits and pieces, a frame here and there and can't put it together into a movie frame." Something like that. Oh, but that makes so much sense! When all you can see, feel experience or know is what is happening in the moment ,it is going to feel really freaking overwhelming because there is no sense of context, there is no sense of anything else existing. There is no sense of WHY anything is happening. There is no sense of why you should put up with XYZ hassle, pain, difficult thing - most people know that when you have pain and discomfort, they are just steps you have to go through in order to reach your goal. But people on the spectrum have trouble understanding what that big picture is. What are we trying to reach? What will happen if...? There doesn't seem to be a world that exists outside of the present moment. Context is almost always missing.

When I was in college, one of the first coping mechanisms I somehow intuively learned to do to cope with the overwhelming amount of anxiety that would hit me seemingly out of nowhere and paralyze me was to list for myself everything I had done that day so far, and everything I was planning on doing later.

I had no idea why this helped, I couldn't explain it to anyone, nor would I have ever had the chance to. It just occurred to me to do, I started doing it, and the anxiety would met away.   I would have moments, all the time, where I would just stop and feel like I couldn't move and often I would fall to the floor crying. Somehow, I learned and taught myself... that all I had to do was say "Okay, I got up at 10, and I had breakfast, and had a conversation with XXXX, and went to this class, and I did this and that, and now I'm doing this, and after this I will go to the computer lab and work on my paper for history, then I will eat, then I will go to the computer lab and do emails and then I will go to bed..."

 It may seem obsessive, but even if there was only one or two things on that list before or after, it centered me, it gave me a sense of place and time and a world outside of the emotion, thought or feeling I had at the moment. I never questioned why it worked, although I did in the years that would follow when I become more self-aware. I just knew it was something I had to do that took the anxiety away almost instantly. I was giving myself a sense of context.. a sense of place.. a mental structure that for other people just seems to be there automatically. Other people seem to have this built in understanding of so much. A built in understanding, for example, of how their actions, thoughts, feelings will impact others. A built in understanding of... things I can't quite grasp yet but was always able to articulate they were missing. It's just that no one ever believed me. How can I tell you what's missing when I don't know what it is? I know enough to know it's missing and you have it, but when people brush off my concerns with "Oh, everyone experiences that," I feel like they can't possibly understand - because they take it for granted that they have these things, they cannot understand what life would be like to live without them.

The other thing I'd do when I would get anxious and agitated was to grab a piece of paper and write down all the things that were making me anxious, then make myself slow down, think about each one slowly, process my thoughts about each one slowly, and then go on to the next one. It wasn't even so much about finding a solution to the anxious thought or problem, although I tried to make that part of it. It was that all these intense emotional thoughts were hitting me so fast and so hard and so all at once that I couldn't process them or function. So once I learned to write them down and think about them more slowly, I could process them and go on. I'd just do it with pieces of scrap paper sitting at the back of the computer lab or wherever was a quiet, empty space in college. I'd be upset, ask people for paper, write it down, go through all the thoughts slowly in my mind and then be okay again.
   
Probably the forerunner of all the writing about my thoughts I do on Facebook, my diary and emails now - because without writing about them, I can't slow my brain down enough to actually process the thoughts without becoming extremely overwhelmed by them. It's very interesting to consider where these coping mechanisms came from, how they developed, why they developed, and to try to give myself the enormous credit I probably deserve for somehow coming up with them. Instead of, of course, blaming and chastizing myself for my way of thinking, doing, coping and being as different from others. Of course it's different from others. My brain is autistic. It's not going to work the same way as others' no matter how much I want it to. I will learn that eventually.


Sunday, August 3, 2014

Connection!


Putting my FB post on here so I don't lose it =) 

Just had a stunningly amazing phone conversation with Samantha for 3.5 hours.... which may be my record. I had forgotten she liked country, and an hour into our conversation mentioned a song on the radio without thinking, only to get intelligent commentary on it and a mention of listening to Rascal Flatts on her CD player. I'm like, what? OHH! It's like when everything comes into focus... when you find someone who speaks the same language as you.

Well, not only does she like country but country radio and not only country radio but every aspect of it that I do.  She knew 92.5 was the Hartford country station, and she lives in Ohio. She knew Bob Kingsley used to do American Country Countdown and even sang the jingle to me. She knew Chapel Hill and Ballston Spa and Springfield MA and all these places I had connections to. She used country radio as security blanket in much the same way as I do, and it is so refreshing and awe-inspiring to find someone who shares quirks I never in a million years thought someone else would. She uses Radio-Locator to look up country stations before trips, like I do. She likes older country better than newer country, but used to love new music programs on the radio just like I did. When I mentioned the program on WPOC that played one new song at 430 every afternoon, she without prompting from me talked about the ones she used to listen to that play two songs and have you vote for the best - which was where I was going next, and used to be on WAYZ and WGTY in college, as well as WOKQ at home for a time. She understood the emotion behind all of my radio things that I love. So cool to have someone listen to you and go "Oh my God" or "Yes, yes!" in affirmation and understanding instead of merely tolerating you. She understood when I said I almost didn't visit the greater NYC area in college for a conference when there was no country station. She used call letters as fluently as I do, remembering them from years ago as I do. When someone can use call letters as an actual word instead of stumbling over the letters or not knowing them at all, then they're probably radio people. She knew the songs I mentioned. Sooo cool. I wish I could hold onto to that positive emotion forever. I had started to be not in a good way before talking to her, and then I was so happy to have a shared passion. Emotion is such a funny, weird, strong thing. It can and does change the entire way you experience the world, good or bad. No wonder people go to such extremes to get good and avoid bad. It is so hard to hold onto good emotion, but I try to.

Then there were good conversations about many other topics, but that was the one that, as the Doors would say, lit my fire. We talked a little about in Buddhism the difference between having a focus on doing instead of being. I feel like for some of the time in the last 24 hrs I've been able to have more of a focus on being instead of doing, which I think would be very useful. But usually I am not able to do that, and become obsessed and anxious about doing, and what I can do and what I can't. But the times I can just sit and let my thoughts run thru me and not get too attached to any of them, and enjoy simple sensory things without needing to plan for the next disaster all the time... Life would be so much easier if I could make that more into a habit. To live in the moment without always planning for a dire future. It would be nice, so we'll see if I can make it happen more.

Wednesday, July 30, 2014

On Tolerating Difficulty


Ramblings from FB on the subject of learning to try to tolerate discomfort instead of trying to always cover it up, change it, make it go away, which is an exhausting endeavor to be doing constantly.

I left the public market a few minutes past 7, unsure of if I should take the bus back or find something else to do . It took about 30 seconds to make that , usually far more complicated decision, because the air just felt so damn bad the second I stepped outside. I had forgotten, in the midst of good converation and just being inside. You think you'd get used to it  but you don't.
Some sensory stuff -  I get used to. Humid air hits me anew every time. So, It's 712 and the bus is for 713. I wait...12 minutes,  not loving the air but okay. Five different buses come and go but no #1. Eventually I give up, realizing I must have missed it. Doesn't usually happen but okay.  I have no energy to walk to the gelato place, which would be my normal back up. My head starts to fill up with the crisis mode of "Oh no, what will I ever do, the bus is not here and I can't tolerate being out in the air and this is a disaster" and I stopped it... I managed to stop it somehow, this time. "Yes, the air sucks," I told myself, "but stop over-dramatizing this and making it into a crisis. You are uncomfortable. That is it. Accept it, and move on." I sat on the bench... thought I might as well just wait, I had half an hour. I wanted so much to be somewhere inside so I didn't have to breathe the air, but there was nowhere I felt comfortable going inside closer than the gelato place, a 10 min walk each way.

. I NEVER just sit and wait. I ALWAYS have to be doing something and distracted. But... I told myself, try just sitting and waiting. Try tolerating it. That will be easier in the end than the energy required to create a distraction, good or bad. So I did. 10 min later my friend Ryan comes up to me randomly.... coming back to take the bus after some class he had . He sits with me, we end up laughing... Someone at the farmer's market had spilled snap peas ALL OVER the ground, tons of them, a few feet away. The market had closed hours ago.  I wondered who would be responsible for cleaning them up and if they'd stay there. I started singing "All we are asking, is to give peas a chance" (peace) out loud to Ryan. I laughed. He told me a joke. I told him one. We laughed again. He was waiting for south portland bus. Thoughts came to me, knocked on my head, said to me "But I'm so worried about XXXX  I need to be talking about that" and  I said to them... NO, you need to be creating good moments now with what you have. Ryan's positive, joyous , fun energy makes that easy to do. I accepted... I told him, I thought of trying to go into those restaraunts (there are several in Monument Sq) but it wasn't worth it (sensory distress of doing so) so I just thought I'd sit and wait. And I didn't say this with an air of pitying myself or worrying or of wanting to be rescued from it, I said it with an air of acceptance that I seldom ever have. And it opened the door somehow. I felt myself somehow relaxing, getting silly with him, saying whatever was on the top of my head to make him laugh, making fake accents, just laughing about nothing for a few minutes. 755 actually came too quickly.

 We walked across the square to the bus shelter, me singing "All we are asking is to give peas a chance" and laughing with a brief light heartedness that I hadn't felt in months.... It lasted only a minute, but it existed. The lighthearted me made an appearance for the first time in months. I wanted it to continue, but the bus was there. I got on the bus, and started to panic about a sensory element of the bus, but was then engaged in discussion by the Coca cola guy and forgot my worries, the sunset happened, the community happened, I was smiling when I got off. I started to panic again when I walked into my room in reaction to a sensory signal... I sat myself down, closed my eyes, and replayed running into Ryan and the sunset until I was calm again.

So.. I need to remember this. I have a very bad memory for positive emotions. That is why I write about them so much. I can never remember them. But if I write about them and talk about them and live them enough I think I can eventually rewire my brain and get them to stay. I tolerated the air without trying to make it better. I accepted my distress without making a crisis out of it or without needing something immediately to distract me. I can USE that analogy in many other situations in my life. The analogy and feeling of tolerating something uncomfortable just because, and of having tolerating it open up other things you never would have expected. Me being lighthearted in that kind of situation? Did not expect. So, I am going to go eat dinner now .

Tuesday, July 22, 2014

Margie's meetup, overcoming difficulty

Rambling from  Facebook I wanted to save somewhere about overcoming difficulty to go to the meetup I go to tonight, and hoping I can apply this to other areas of my life.

Let's see if I can put these thoughts into words before I forget them. I worked hard to figure out how to calm the racing thoughts today. I want to keep it up. I spent... a lot of time trying to figure out if I should go to my meetup tonight, because I had been informed by email before that there was a new rug that may bother me. So... the argument in my head was basically "I have no idea how bad it will be, how can I make myself go somewhere where I'll be captive to whatever it is? How can I make myself handle that stress when I have so much else to deal with?" versus "If I don't go, I'll just be wandering around Portland all night lost in my increasingly distressed thoughts. I DON'T WANT THAT. I WANT PEOPLE."  along with the realization that my determination and ability to put emotional connection with others first and foremost before my desire to avoid physically challenging situations would be a skill I really need to develop for the rest of my life.... and that this would be a good test for the apartment, to work on tolerating a space I didn't find particularly comfortable for the good of connecting to others.

Surprisingly after I made this decision I felt somewhat calm.... and resolute. There was a smell of something , a feeling of something, but I was calm. It's an interesting feeling, walking into a building fully expecting something to assault you, at least sensory wise - but hoping it won't. I am sure to some degree it heightens the senses and makes incoming sensory information exagerated, so senses are not always reliable. At the same time, though, with me, if I can be prepared, a flow of adrenaline or some other unidentified substance seems to be working overtime to stop or block the anxious thoughts about the smell. So, on the one hand I'm more aware of sensory information, but on the other hand I've got my shields up so I'm more prepared to deal with it.

I focused on the taste of my smoothie which I still had with me, and associated the positive taste of that with the place instead of the anxiety I was feeling. I focused on the sound of M's voice as I came in. Something was affecting me, but I would be hard pressed to describe it. It was an awareness of feeling off, feeling uncomfortable, but also on the one hand an awareness of being in the presence of something wonderful, emotionally. I stood there resting against the banister of the stairwell, listening to people speak, thinking, "Well, if all I can do is stand here and listen, I'll be okay." Listening to someone talk about the duality of life, I had to laugh, since it was exactly what I was thinking about. There were some great themes and examples of other people struggling with jealousy about wanting to be more like others in their lives tonight, that I could really relate to and needed to hear. Stories of others who had looked to other people for love and "fixing" and to hold them up and then found they needed to hold themselves up. Emotionally, it was a very interesting night to listen, although most of the emotions I couldn't actually feel, because when I am trying to block out my thoughts to just be in a place, I have to block out all of them, good and bad, and my only way to access them is to try to process what I can remember afterwards, usually in writing.

Anyway, I thought "Okay, I think I can tolerate being in the house. Let's go further and see." I had worried about being in the room, but it became clear that I could easily sidestep that problem by sitting in a chair on the edge of the room. Far away enough from both the floor and rug that although I was still aware of it, I wouldn't have to be overwhelmed by it .I felt affected physically, but wanting to participate emotionally. The discussion topics made it easy to do so, because there was so much emotionally meaty stuff being discussed. While I had to put effort into talking, somehow my anxiety valve got shut off along with all the other thoughts I was trying to suppress, so while it was hard it was also not hard at all, which is an interesting duality. Emotionally ,it was easier than usual. Physically, it was harder. Can those two really exist at the same time? I guess they can . And did.

There was a new person I really liked, who I exchanged contact info with. There was another new person who was an OT who worked with kids with sensory processing issues. She didn't know of any resources for adults but said she'd ask. None of the child OTs seem to know. I 'm told by people I'm going to have to blaze my own path. I guess they're probably right. Some autism centric conversation followed. I spent the first part trying to figure out if I knew the guy on the right. Face recognition issues are lovely. Sometimes you can't even figure out if you know someone, let alone what to say to them. In fairness, I was across the room from him. Up close, I could see that I did not know him.

The level of emotional intensity... For me the level of emotional intensity was very low, because as I said, if I allowed emotions in they would focus on the physical stimuli and make it impossible for me to be there. And that is exactly what happened when I started to relax a little, they came rushing back in. So  it's not an environment to relax in, but to function in is good enough. It's not like I came back being like "I had so many emotional connections" but I DID have emotionally meaningful conversation, and a "lite" version of connection, and I did it in the presence of a significant negative sensory factor, which is unusual for me. I still don't know if it was the fragrance on someone who was there or the rug that bothered me, actually, but that's not significant. And I got a hug at the end and good hugs always make me happy. =)

We talked a lot about... I am losing the thought. I am working on not identifying with my panic. Before I left, listening to the radio at the public market, the weather came on, and triggered its usual panic response. I told myself, This is good practice. Practice being with your panic and realizing that it's okay. Practice tolerating the feeling of panic. I did, for a minute or two. I managed to listen to the forecast, which is triggering to me often in the summer, and try to say "You see this feeling? Don't identify with it. It's a trick! You're really safe, and okay, and fine, and nothing bad is happening in the moment! Don't identify with it!" I did for the rest of the evening, but it remains to be seen whether or not I can continue to do it on a consistent basis.

But yeah. I figured having a goal to work towards tonight even if difficult would be far better than the alternative.