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.

Wednesday, July 9, 2014

More on Regulating Emotions

Thoughts after two therapy like appointments today 

To assume that others can see my emotions, read my emotions, and be affected by my emotions... is what I need to do. Maybe most people have this assumption, but I never had. I think that the term "mind-blindness," often used to describe autism while drawing some ire from some in the autism community, is very apt for this situation. To describe me personally. 

I had no conception of others growing up other than my own emotions about them, and usually my only emotion about others was fear. This is not something I try to spend too much time dwelling on but it is fact and true. So, my emotional growth has not caught up with my verbal, intellectual growth and with the drive for social and emotional connection that I have.

This feeling of mindblindness comes from not being able to see
others' emotions - probably because the feeling of your own is too great. If we go off the intense world theory of autism, the wiring in our brain is so intense and there are so many more brain cells, with limited ability to process the increased intake of information, that we are very overwhelmed by emotions and feelings, some more than others. So how to pay attention to others' feelings in this state?

We assume that our experience of the world is like others', though, to an extent. Since I have trouble feeling others' emotions - I knew they existed intellectually from reading books but couldn't feel them - I assumed people couldn't feel mine. The clearest autism symptom that I can remember having displayed all my life is a very limited ability to perceive others' perceptions of me. When I was a kid in elementary school and we were asked to share a secret about ourselves, I said that I liked cats. Everyone laughed, because to them this was obvious. I didn't know it was obvious. I didn't know they knew. Unfortunately, my ability to perceive what others know about me has not really grown very much at all, even despite most of my other social and emotional areas growing.

Since I don't know what others know about me, I have a very hard time experiencing empathy from others. The concept of imagining that other people can imagine my own internal experience is VERY foreign to me. People have to be expressing a really extreme, volatile, obvious emotional expression in response to my inner state for me to have any idea it's happening, and even then it tends to be time-limited to the experience. This is insanely frustrating for many reasons.

Difficulty feeling or perceiving others' emotions leads to extreme emotional isolation. Empathy is only one problem that results from this.

If you can't perceive how other people perceive you, you are not motivated to change yourself to fit any type of pattern or social norm to fit in better. You are not even aware the social norms exist, and once you are, the thought that you don't fit into them feels you with so much shame and pain that you can't bring yourself to try to change even if you could, which most of the time you can't. You think you just need to be okay being yourself, and you do that for a while, and have some limited success at it, but the fact of the matter is that if you don't conform to the social norms to some extent, you'll never be able to access the emotional connection you so desperately want. If you don't play by their rules, they just won't play with you. 

So how then, to regulate the emotions of a body and mind gone mad, a body and mind used to having the freedom to express its emotions, and really having the need to express its emotions, to fit into a society? Without emotional connection to rest on and bolster you, there is nothing to focus on but your emotions and body. But somehow you have to get it regulated so that you can play by their rules and get connection. I don't yet know how but I know I have to do it.

I have been thinking, just today, that I am responsible for the emotional environment I create for other people. Until today ,I am not sure I was entirely aware that I DID create an emotional environment for other people. It is so frustrating beyond belief to realize that people are getting so much information from your body language and emotions and feelings, and you just feel enclosed in this glass prison, this internal prison, with no sense whatsoever that they knew your feelings existed - much less had the reaction they are having to it. You don't realize people have reactions to your behavior and emotions until they're so overwhelmed by it that they explode on you. THEN you feel it, then you understand what they want you to do , but by then it's too late! They're sick of you! How to understand what people think and feel and want and are before you push them over the edge? This is a question I keep trying to ask.  I spent my life trying to make people laugh because laughter was about the only emotional response I understood, but life can't consist of only that . 

So , I am  responsible for the emotional environment I create, but how do I regulate my emotions to create a safe environment for people?
In February when I first started coming to the museum I was aware of this fact to a limited degree. I would take the time and effort to calm myself before I entered the museum so I could have calm energy and feel good to those inside it, and so I would be more likely to get a good response from them. I might not have quite realized I was doing that and why, but I was. I was doing it right until summer started and the humidity came and with the humidity my ability to self-regulate was completely gone. Because it was the cold , crisp , beautiful air that made me feel calm, and without that, and with the humid air that makes me feel so suffocated, I can't access any feeling but panic, any feeling but the feeling of constantly trying to run away and constantly trying to be safe. And I am bringing that with me everywhere I go. No wonder I have had such trouble having connections lately. It is frustrating beyond belief. I on the one hand know I need to still be responsible for my emotions, but what do I hang on to regulate myself, to calm myself, when the survival instinct inside me is so triggered and overwhelmed all the time? It is a real problem. 

I know I need to fill my own emotional needs, to validate myself, and not to expect other people to fill my emotional needs. I need to access my inner strength and inner whatever and make myself be okay. I need to b okay before interacting with others if I don't want to overwhelm them. But I just don't know how to do that and I hope I can learn eventually. 

I was told today to tap into my love for others, to think of what they might need, and to give it to them, as an expression of love , and to be filled up by that love.  Well, that advice was in regards to one person in particular.

I was told, I'm genuine, and being genuine makes other people feel heard. So I do help people and engage them just by being me when I am calm. I can rest in this and not try so hard to be meaningful and relevant, but just instead to be. I am beginning to think I expect too much. I want to be all these lofty things, relevant and meaningful and so on and like someone said to me today, most people just go to work, watch tv,when they get home, go to bed and repeat it. They often drink to dull the sense of dissonance  between what they want - to feel relevant - and what their life is. To have true connection occasionally is a great thing. To expect it every single day is bordering on ridiculous and insane, because you'll drive yourself insane by trying to get it every day. Somehow I have to be okay with less of it.

I don't have rest of my notes.

I want to increase my distress tolerance and validate and soothe myself without a lot of external things. Then I can be calmer in life and have more emotional connections. Somehow.



  











Sunday, July 6, 2014

Munjoy Hill's Steep Hills Teach Life Lessons


Munjoy Hill's Steep Hills Teach Big Life Lessons

When I moved to an apartment on Portland's Eastern Prom two months ago, I had two goals in mind. One, to involve myself in as many community and social activities as possible, in order to increase my level of emotional connections and growth, and two, to avoid walking up Munjoy Hill. Those two goals ended up having more parallels than I ever would have imagined.

I don't drive, and I have an avid dislike of steep hills. Physical discomfort has always been something I have struggled with, and as much as I wanted to live in Portland, when I found out I'd be living on Munjoy Hill all I could think of was, "I'm going to be a mile from downtown and not be able to walk in and out of it?" At first, I took the bus in and out. There is no bus on Sunday nights, however, and my fragrance sensitivities usually prohibit me from taking a taxi. So, on the way back from my immersion in the quirky and wonderful social landscape that is Portland, I often had to be creative in order to find a way home.

My first attempt to get back to the Eastern Prom on foot from downtown was the most obvious way, to take Congress. I could do it, but it was difficult and drudgery and I had no interest in trying again.
Several weeks later, I attempted to take Commercial Street on my way back from meeting a friend at a gelato place on Fore Street. It was long, monotonous and had an uphill at the end, which exhausted me. I gave up for a while on figuring out how to walk back to the Eastern Prom. Until a night a few weeks ago, when I was faced with the dilemma of trying to get back from an event on India Street and Congress. Standing at the corner of Washington and Congress thinking how much I didn't want to walk up Congress, I had an idea. Didn't Washington go to the Eastern Prom somehow? I am terrible with geography, so I didn't really know. But I decided to try it anyway.

I had a feeling, an instinct that I was going in the right direction, but I didn't know what it would look like when I got there, or how long it would take. I was afraid of getting lost, but I kept going, and soon was rewarded with the sight of exactly what I was looking for - a long, winding road with a very low grade of incline that led up to a small park overlooking the Eastern Prom. I felt victorious. I trusted myself and found a way to get into the Eastern Prom without hills.

During the same week, I approached organizations at a gay pride festival with a slightly unorthodox idea that I had with more confidence than I had ever had before, and got a very welcoming response. Originally a very anxious and socially isolated teenager and young adult, I grew in my level of confidence in my social interactions and started experiencing better responses from others. My physical explorations of Portland's East End mirrored my own emotional growth, and reinforced the lessons I was learning.

A few weeks later, I was at Whole Foods on a Sunday night. How to get back from there? The most obvious way was a very steep uphill that was probably less than a mile away, but far too steep for me to consider. One night, however, I decided to approach it in a different way. I took Franklin to Congress, Congress to Washington, and Washington to the East End. It might have taken an hour to walk back, but I was calm and happy when I got back. I rested at each intersection, and later related this to the value of finding places to rest along the way when we are in the middle of emotional difficulties. Instead of over-identifying with our problems and thinking we need to be doing something to solve them at every moment, we need to learn how to rest. Always being one to analyze things deeply, I also reflected on how if I had taken Fox Street, the steep hill, back from Whole Foods, I would have been in tears a quarter of the way up because of the physical discomfort of taking a hill with such a high difficulty level. But because I let myself take the long way, and had enough patience to rest along the way, I was able to eventually get to my goal, calm and in one piece. Similarly, when I let myself take a break from figuring out how to overcome my difficulties, I am renewed enough to take them up again afterwards.

I thought I was done exploring alternate ways to get in and out of the Eastern Prom. But tonight, a whole new level of insight into my own life was revealed by a chance decision to walk back on yet another Sunday night from the Old Port, using Fore Street. I had decided not to try Fore, because the memory of the physical exhaustion that taking Commercial St had caused was still fresh in my mind. I had thought Commercial and Fore streets were parallel to each other, and therefore would be the same experience walking back. I would find out  that although they were parallel to each other, they were not the same experience. Fore St was a lot shorter and more pleasant to walk on. I was intoxicated by the sweet feeling of competence and self-sufficiency as I neared the Eastern Prom, and reflected yet again on the parallels of my walk home to what is currently going in my life.

In 2007, I attempted to live in an apartment in downtown Portland, but was traumatized by various events and spent the next seven years trying to find every way I could to avoid living in apartments again. Now it's 2014, and I have realized that living with roommates in houses and such is really not working for me, so I have to try again to get my own apartment. For most people this would not be a difficult matter, but I keep running against my own feelings of panic and anxiety and a feeling of desperation to avoid the fate I had endured in 2007. Friends and family keep telling me that the experience will be different this time, but I have trouble listening. I want to believe it will be true. As I was nearing the Eastern Prom tonight, a smile on my face as I saw the now-familiar street names, a thought occurred to me. I had been so sure that walking on Fore Street would be as difficult as Commercial just because it was parallel and seemed similar. But it wasn't. My experiences in 2007 seemed parallel to what I was attempting to do once again in 2014, but what if they weren't? What if they were parallel but not the same, just as my walk home tonight had been? I caught a glimpse for the first time of how things that seem bad don't always have to be bad.

Just as I never dreamed I could have the emotional connections with others that I am starting to build, I never thought I'd find so many ways to walk in and out of this beautiful area of Portland. My physical explorations of the city have reinforced my emotional growth. I will soon have to move, but I will look fondly back to this time as a time when I was learning to trust myself and my abilities. After all, if I can find a way to walk in and out of Munjoy Hill without hills, then what else can I do that I didn't think I could do?











Tuesday, July 1, 2014

Finding Connection in Unexpected Places

Yesterday, I was at the Whole Foods cafe, trying to beat the heat and find a measure of sanity for myself. Caught up in my thoughts, sitting at the long wooden table in the cafe, I barely noticed her at first. There is a woman who works there who I've always enjoyed exchanging greetings with. She is very genuine and enthusiastic. She somehow seems more real than everyone else, more there. We have never exchanged more than short greetings and "How are you?"s. Yesterday, I saw her looking out the window at something very pointedly. She was staring at something, in much the same way I'd do. She was really into it. She approached someone else and started to tell him what she saw. I ripped myself away from my music, my thoughts or whatever I was doing and approached her to find out what the object of interest was.

Turns out there was a reflection of one of the people in the cafe in the stone on the other side of the glass window. It looked like there was a man in the stone. Kind of like a "man in the mountain " kind of thing. Very cool. I stood and observed it with her for a few minutes. I told her "That's cool! You're so perceptive! I like that!" She thanked me with a tone of voice so genuine and surprised that it sent shivers down my spine. I recognized myself in her. I am always the one to be noticing things no one else notices. Later on in the night, I ran into her again, and asked her how the rest of her day had been. She told me a story of picking strawberries in her backyard that was so full of passion, emotion and feeling that I wanted more, far more. I mused to myself that maybe I should ask for her phone number or find some way of getting closer to her, since I really liked the vibes she was putting out. I didn't know where she was and had no energy to look, though.

An hour later, as I was using the bathroom before I left, I ran into her by the  bathrooms. I asked for her number and told her I enjoyed her passion and emotion. She told me that people told her that "you could always tell what emotion is on her face", what she's feeling. I have a feeling she may be a person after my own heart. I have to remember to call her. It would be so nice to find a kindred spirit in this world.

Great things happen when you keep your eyes open to the wonders around you.