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.

Sunday, June 29, 2014

The importance of taking breaks

I feel rather victorious... I just walked from whole foods back to the eastern prom using washington to avoid the steep hills of fox and walnut... and i did it. was it easy no but i did. now that i am sitting it is starting to catch up to me. but yea. trying is so much better than not trying, trying w/ the belief that you can do it and while being connected to inner strength best of all. 

the key is in taking breaks. I took whatever street is next to franklin.... was slightly less steeper than pearl, to congress and then rested on the stone structure by catholic charities. then i had the part of congress from franklin to washington, and rested at otto's when i got to washington at their outdoor tables (they were still open, it was 1030!). The part on washington felt long but I did it... eventually got to the path that led up to the eastern prom. rested on the benches in the park there before i did the part of the eastern prom, and on a bench near the apt when i got here. Four equal parts.... all seperate equal parts... and the key was not so much in SOLVING THE PROBLEM RIGHT NOW and I always want to do but in finding appropriate places to rest in the middle. If I had taken Fox and Walnut, it would have been far quicker, maybe 3 times as much, BUT i would have never gotten up the damn thing because it's too much difficulty too fast. I would have been in tears from trying before I even got a quarter of the way up. So, that is a good analogy for life, in that when you push yourself to do something too quickly or too far above your ability level, you'll give up and give up on everything. BUT if you decide to take the long and winding way, as I did tonight by going out of the way to go back up to Congress and then to Washington, and then rest along the way, you'll get there in one piece... tired, but with a sense of achievement and sanity intact.

If you take Commercial, like I did the other night, the difficulty level is only moderate but the DRUDGERY of it will kill you. And it was freaking long. And no place to rest. Analogy to life... If you don't do things with some difficulty level, you won't get to the peaks that make it interesting enough to keep going. All flat terrain may look appealing but the drudgery of it will kill you.

So, yeah... took about an hour with breaks. No bus on Sunday night and the one taxi I'll take wasn't available. Very humid today so that is a big part of what made it such a big achievement. The humidity got better at night but was still there... 55 dewpoint instead of 64 did make a big difference, though.

Learning to connect even when the world feels it is falling apart, learning to find your center...
I was in pieces when I got to the museum and didn't think I'd be able to stay.... but then calmed down and was able to talk to N... which made me feel calm enough to talk to the artist who was showing his work in the room across the hall..and then came back into the main room and two older men were having a vigorous conversation with N.... which I was able to sit calmly and listen to and then when I figured out what they were talking about, participate in on occasion.... I really enjoyed that.. they asked such pointed interesting questions.... and at times the conversation moved too fast for me to keep up with but at the same time they were at least talking in complete sentences, unlike so many people, and so I could at least figure out what they were trying to get at . They were asking, among other things, if the synagogue would marry gay people. Then a discussion on transgender people and the receptivity of different religions to gays ensued. As well as some sort of discussion about people who didn't know they were Jewish, or weren't exposed much to Judaism, and were basically raised Christian but then came back to their Jewish roots.

 Or something. It was interesting, but hard to keep up with, as it moved so quickly. But fun, so much fun, to be a part of. Then the one guy asked me what I did, and I said I'm a writer, and then the questions of what do you write about, he seemed interested, I gave my standard answer, psychology ,but he wanted more, so I said disability, more, so I said autism... he wanted to know all about autism, and so I told him what I thought might be relevant.... gave him my blog.... my friend came over to help me with something and met me there and then turned out she knew N from a long time ago..... wandered whole foods for a while.... I survived the day.... Oh.... Met a girl I talked to at WF in the cafe...got phone numbers from her and this woman who is the janitor there who I always like because she kind of stands out in a way that feels familiar to me..... So... I did manage to seek and find social connection today, even on a  83 degree 64 dewpoint day where I was falling apart at first but managed to keep going until I found my way to connection..... Now I feel ...... Pretty not grounded but maybe with a little more sense of being able to handle it... Maybe with more of a sense than usual of my connections to others and ability to handle it... I hope that lasts.

Saturday, June 28, 2014


The Strawberry Festival in South Berwick today made me realize how much I've grown emotionally since last summer.

Nate, Rob and I have been going to the Strawberry Festival every year since I got back to Maine in 2009, as far as I can remember. Festivals were always the highlight of my summer. But this year it just didn't do it for me. I think though in part it was because I have been lucky enough to feel an emotional connection deeper than a few trinkets at a festival, since last summer. As recently as last summer, I NEEDED the symbolism of past memories, the sentimentality, the ... something of these festivals to feel any sort of emotional connection or joy or ... something... they were the biggest thing in my world, these festivals. I didnt even eat the food... and yet I'd take pictures of it endlessly. I realized today not so much that I lost something I enjoyed but that I had gained something so much more fulfilling.

Walking around the hot sun looking at people selling things just didn't seem like much fun compared to what I have, which is tenuous still and still not what I'd like it to be, most days, but still such a far cry from what I had before. I wonder if the only reason I liked those festivals is I'd often make small talk with the people selling the stuff, and it was probably the only way I had to actually socialize, in however small a way, with anyone outside my family or Nate and Rob. I shudder to think about that, actually... I really do. I may still be far behind what I'd like to be, but to have the people at the museum to talk to, and socialize with in whatever quantities are available at that particular day, and to be able to go to at least some social events such as the open mic or other random intellectual discussion type things when they occur around Portland... to have the strength and courage to even try to go into buildings to find these connections.... I didn't have it as recently as only a year ago, the last time we had festival season. I think that seriously, the only reason I liked it was the connections, however brief, I felt by being able to strike up very brief conversations about the vendors and reminisce about when I used to be able to eat whatever foods they were selling... it was all just.... so meager. I made it my world, because I really didn't have anything else in my world. The brain is good like that, when it needs to be.

I saw the Buoy Bat stand and it was strange because I'm thinking to myself, "Last summer, I was really excited when I saw this stand. I'd count how many festivals I saw them at. I'd take pictures. Now I'm just like, what could I possibly see in a stand selling buoy bats?? I have no interest in buoy bats! I can't even pretend to have an interest! I have an interest in people now!" Something along those lines. Sometimes seeing yourself not fit into an environment you used to enjoy is not bad because sometimes it reminds you of how far you have come.

Maybe it was just the only place I could access energy outside of myself.

I hope to God I never get desperate enough again so that my only social connections come from vendors at a festival selling the same things at every festival, things that for the most part I couldn't care less about.

I got these cute little heart magnets that interlock with each other... a reminder of the power of love. I have lately been feeling frustrated because I often feel my relationships aren't as developed as other.s.. but just t ohave them at all to have the beginnings of them and a way in, a way to work at making them stronger, feels so much better than I did last summer when all I had was festivals selling stuff to make me happy

It is such a scary feeling to feel like you are in some way depending on others for your happiness. I think maybe I resisted that feeling for a long time. But it is the only way to actually get true happiness. Being a rock doesn't do it. You have to keep yourself open to being hurt by others if you want to be feel the feeling of being loved by others. This, I am learning among so much else. Patience has been difficult. But, oh the reminder of how far I've come!

Random Observation on a Trip to Ogunquit

Met a guy on a bench in Ogunquit from the Bronx. I mentioned I had lived in upstate New York in a town called Liberty, and he said "Oh, the Borsch Belt." First of all, people in Maine usually have not heard of Liberty! No one has usually heard of Liberty. Secondly, I was secretly delighted as I felt he was probably Jewish if that was his reference point. I considered how being from the Bronx, running into Jewish people was probably second nature enough to him that it wouldn't matter, but somehow, to me, it did.
Then he complained about the two girls "taking up the best benches, and they're so angry" and I marveled at how different perceptions of the world could be. For I had passed those girls, and my only thought had been that I wanted to stay and listen a while longer. The woman's words and language was so passionate and so emotional, that I felt myself instantly relating to her emotion even when I couldn't get most of the words. I felt myself drawn to her. Later on, I actually did end up sitting on that bench across from them for some time, and let myself just soak up the emotion in her voice. It felt familiar, it felt like home, it felt so good as it washed over me. Some discussion about people that annoyed them, I don't know, but the passion was wonderful. To me it wasn't anger - to him it had probably seemed like it. It was emotional intensity, but not anger.
There was a guy playing the guitar, the Tremeloes Here Comes my Baby, "Everyone's Talking at Me," and a couple other 60s songs. This guy saw me singing along and asked me who had done the song that the guy was singing. "I'm using this app on my phone to figure out who sings it," he says, "but it's not working." (The app someone on here told me about, I forget the name). I quietly marveled how in this world of new technology at least people still have some use, laughed to myself, and went on.
Traffic in Ogunquit was ridiculous trying to get out of it. It was standstill traffic for miles on Route 1 or to Route 1, so we took the interstate. People, including us, should probably be aware there are other places to go on the Maine coast besides just Ogunquit.

Sunday, June 22, 2014

Finding Your Path - Literally and Figuratively

I had an awesome walk home from the fundraiser at the museum today. I sat and contemplated for a while at Otto's and then when I was ready to start walking back, I was in a good mood from the song on the radio and my mood in general, and didn't want to lose it. 

I started to walk up Congress but the physical sensations of doing so were totally getting in the way of enjoying the song, and I really didn't want to walk uphill, at least not then, when such a good song was on the radio and I wanted to enjoy it. I was by Washington and dimly remembered that that might lead somewhere by the Eastern Prom, but wasn't sure. I was hesitant to take a way that may or may not actually lead where I wanted to go, but it felt right, so I decided to trust my instinct. 

I went for half a mile or so, and saw Walnut, which I know runs to the Prom. It was straight uphill and I'm thinking "Maybe this wasn't such a good idea, I'm going to have to get uphill somehow." But I kept thinking, even though I couldn't picture it, that somehow it ended up in the Eastern Prom. I couldn't remember how, but I felt like it did. I doubted myself and called Rob for directions, but all he could tell me was to go up Congress (um, yeah, trying to avoid that). As I was talking to him and tentatively taking more steps forward, exactly what I was thinking I would find but couldn't picture came into view. Yes! That little winding road that leads to the park on the corner of North St and Eastern Prom. I knew exactly where I was, and the grade of that hill was so low as to hardly qualify as a hill. I had found a way to get to and from the Eastern Prom without hills. I was very excited. Also, more importantly even, I had trusted my instinct even when I had no idea if I was right or not and was paid off handsomely. 

I tend to take everything and make it into an analogy for life. Perhaps because I'm so eager to learn ways to cope with life! It occurs to me though that it is the perfect analogy for life. Having an instinct, following it even when everyone tells you to take a different way, not being able to picture something but still knowing it is there - that concept in particular has been a hard one for me to grasp, but I am seeing that maybe, just maybe, just because I can't picture something doesn't mean that it doesn't exist. The emotional connection and positive feelings about my self , I can't quite imagine at this point, but I know it is there. I see glimpses of it from time to time and so I know it is there. I keep working at it, taking the only way and methods I can think to use, and trying not to pay attention to others when they say it's not possible. Or when they say I should be taking another path to finding it. The analogy is perfect. 

I got to that little park just in time to see the sun setting over the ocean. It was beautiful, and I sat and watched for an hour, listening to music and connecting with it all the more intensely because of the positive emotion of achievement. Between there and wandering around across  the street from my apartment because I felt too good to want to go in, I was out for two hours, lost in so many good songs on the radio and so much positive emotion. I left the museum at a few minutes before 8 and it was 1043 before I got inside! The whole thing didn't feel like it lasted more than a half hour. THAT is the kind of losing myself that I like to do... Losing myself to positive emotion instead of negative for once!

I felt at peace... like nothing was attacking me for once. Lost in the positive emotion, as I said, of achievement, of lack of overwhelming sensory input for once, of comfort, feelings of emotional connection from the day still present, and good songs on the radio which made me also feel connected. Just wandering up and down the Prom singing. It's so good to feel good for once. 

Thoughts about Neurological Basis of Sensory Overload

Thoughts about Neurological Basis of Sensory Overload and Isolation and the role of music in making me more able to emotionally connect to others 

I, as always, did a lot of thinking today. Had a good time at event at museum that was celebrating a 100 year old Holocaust survivor, but that is not why, merely something I want to remember for the future, because being part of something felt good. 

There is a concept in brain research, that the brain is neuroplastic. That means it can change. The brain has a lot of real estate, and if one part of it is not lit up, that area will be taken over by a new function. That way, all of the brain is being used to its full potential. Except sometimes, what the brain ends up getting used for is not actually good.

I am starting to think that most likely, not being able to even perceive the concept of other people as people for the first thirteen years of my life probably left a lot of empty space in the "need some sort of input" part of my brain that was not being occupied by, well, emotional input by other people. 

So instead, the brain organized around the only thing it had, which was the sensory input it was getting and the feelings of being me in my body. Everyone's brain of course naturally does this, but if a person with autism or who is otherwise isolated does not have social connections... 
the brain instead devotes a tremendous amount of real estate to focusing on sensory perception, physical pain and the emotions and feelings of self. *** There is no "other" to balance these things out. *** They multiply and grow 100000x without any "other" person or feeling of others to balance them out. Which might be one reason life feels so intense for many on the autism spectrum - and so isolated. 

It also may be why for me to actually feel someone else in my head, my heart, my emotional space immediately just makes all of the previously mentioned physical and sensory stimuli a hundred times easier to tolerate, and why I keep seeking this feeling of connection with others in every way I can think of. The brain is neuroplastic, which means it can change. Having other people's emotional input in the area previously only reserved for my own feels good. Hopefully in time it will be there automatically instead of just occasionally. It goes away when the person goes away, at them moment, or maybe lasts a few hours after, if I'm lucky... but maybe it won't always be that way.

I was thinking earlier how I had started listening to music, coincedentally, the same year as I started to become aware of other people as people instead of just objects that I was afraid of and tried to dart around like a Pacman player avoiding blue ghosts that will eat them. I thought it was a coincedence, but maybe it wasn't. When my grandfather gave me a Walkman the summer before what I think was my seventh grade year, I got into 60s music and oldies radio. I don't remember when I started wearing my Walkman all the time in public, but a friend tells me I listened to it as early as seventh grade. I don't remember it until high school, but regardless, it was when I got into music. I didn't even like music before that, except for the soundtrack to CATS which I listened to over and over again. 

I wonder if having the emotional connection to the music made me feel safe enough and secure enough to be mentally and developmentally open to people around me. I wonder if that is what made me go from seeing people as objects to be afraid of to seeing a little more of what they were - I began noticing that people were in pairs, and had friends and did things with each other. They looked happy. I realized what the concept of friend was for the first time. It was a very basic conception, but still. My realization was something along the lines of "They seem to make each other happy." I realized I wanted that. I had no idea what it was, though, or how to go about getting it. That, of course, would set off years and years of pain and suffering while I tried to figure it out, but that is not the issue up for discussion at the moment. It was like listening to music and having emotional connections to it was a proxy to allow me to be able to understand the concept of emotional connections to others.

But I still find it so much easier to relate to music and connect to music than people. I still carry my Walkman everywhere to calm and soothe me and serve as a substitute for the human connection I so much want. Using it as a safe space, I am able to take tentative steps from it, reaching out to people and trying to connect with them, as long as I can come back to it and drown my frayed nerves and anxieties in it. I can start to feel what it feels like to have emotional connections with others, and it's wonderful and amazing and so not like anything I have ever experienced before. But it's also fleeting, oh so fleeting ,over almost as soon as it begins. A depth of emotion and connection that at once takes me over and makes me feel safe, warm and fuzzy and good, and then leaves, leaving me to fall harder and harder into the depths of despair as I try so desperately to get it back. This back and forth dance, quite frankly, sucks. But the only option I have, every time I fall back in to the craggy, barren, desolate atmosphere that it is my brain when it is isolated from other humans is to sigh, listen to some music to help calm me and help take the pain away, try to right myself, and throw myself down the cliff once more, trying to grab onto connection to fill myself up once more, hoping and hoping that this time maybe it will last. Maybe it does last for a little longer now? Maybe a few hours instead of going away immediately? It is hard to say. 
There are some times, now, when I can actually connect with the sense of connection to others in the depths of my despair, a despair that in so many ways has come to feel almost like a natural state. This is good, but I want more, and patience is hard. I so envy, but try not to, others who probably feel this sense of connection too others and basic calmness on a regular basis and don't have to fight, kicking and screaming for it. But in the end, my choice seems clear. Keep searching for the emotional connection, as it is the only way to survive. 

This will make one hell of a book when it's eventually finished. Assuming I don't lose all the various pieces and places where I've written about it over the years and can remember it all as well as I do now... 

Saturday, June 21, 2014

Asexual Pride!

The world is full of energy, both positive and negative, that we take on. Unfortunately for me, I am pretty sensitive to the energy around me. I very easily lose control of my moods and mind depending on the energy around me. All too often, it is negative energy that takes over my mind and spirit. But I was so happy today that the Southern Maine Gay Pride Festival was such an atmosphere full of positivity - and that I had the confidence, gumption and tools to try to figure out how to access it.

My friend Lee and I handed out a letter and pamphlets on asexuality to as many organizations as we could find. Fortunately, we chose a very good year to do this, because Pride was bigger in Portland than it has ever as far as I know been. I was stunned. Usually, Pride is an ice cream truck, about a half dozen tables and some really loud and annoying music that I end up wondering why I'm even there after about half an hour. Despite that fact, I usually go every year. How could I not? It's the only outward manisfestation of pride for being different that I can find anywhere. 

This year, however, there were probably 30 or 40 tables and the energy was just electric. I had a mission, a very specific mission, and that probably helped me tolerate the chaos and very loud disco style music as well as I did. I was so focused, I could drown it out. Sometimes it would enter my consciousness and I would just be like, okay focus on the pamphlets. 

I wrote the letter last night, and found the pamphlet already ready to use on AVEN. The Kinko's in Monument Square worked very well for making copies. When we got there, I just decided the best way to deal with all was just to start. So we did. It was large and unwieldy and the tables were scattered seemingly everywhere, but we chose a direction and we started. The first table we came across was asking people how they could make pride more accessible to people. Well, what better place to start having conversations with people about asexuality? 

I wasn't sure how I'd start or how it'd work, but I knew I had to do it. I was doing it for my 13 year old self who had been so lonely and isolated, not knowing that asexuality was even a possible option. I couldn't fail, as long as I just tried. I chatted with the guys for a minute about Pride itself, and then said something like, "We're representing asexuality. We believe that the gay, lesbian and queer community is a natural place to raise awareness..." and I usually didn't have to say any more than that and their faces would kind of melt in a positive way and they'd say something like "Of course."  Of course. So simple but so profound. They all said something like "Yes, I agree!" "Of course!" "I have a friend who's asexual!"  "I think this is great! Thank you so much for your work!" The PFLAG people even seemed interested in having us speak at one of their meetings. 

Two people said they had friends - close friends, it seemed, from their body language and voice when they said the sentence "I have a friend who..." It seemed to resonate with them. Two out of 8, actually, is a pretty high percentage to be aware of this, to be closely connected with this. 

We gave out eight pamphlets. I believe we gave them to the following organizations. The organizers of gay pride in Portland, Equality Maine, GLSEN (gay lesbian education network), PFLAG, Outright (gay youth org), the Holocaust and Human Rights Center of Maine, and the Human Rights Center. People were so ..... They were wonderful. I didn't get a single quizzical look, a single "What the hell is she talking about" look. I had expected it... I think I felt more confident because my friend Lee was with me. I don't think I've ever felt so un-self conscious..... Ironic, because what I was doing was about the highest difficulty level you would think you could get to. Going up to people who represented sexuality, even if it was a different and, according to society, "divergent" sexuality, and saying to them "We don't want sex, and we want to be part of your community," to me would seem to be a very high difficulty level. And I think it would have been, if Lee hadn't been with me. Never underestimate the power of the support and community of another, even one other. I would have felt foolish by myself. I would have NEVER been able to do that. I mean, I might have done it, but I would have been meek, shy, stepping in with one foot in and one foot out, filled with anxiety.

**************************** Break to denote transition into more self-analysis and less about the actual Pride*********

And I probably would have gotten.... I think it is very likely that I might have gotten quizzical, worse responses then if only because people would be responding to my body language and not my words. It's hard for me to believe and to understand so late in life, but people seem to respond far more to body language than words. I wonder if all the times in my life where I got bad or quizzical responses from people, it was not because of the content of what I was saying, but because people couldn't figure out how to respond to the messages they were getting from my body language, that I wasn't even aware of sending. I know when my friends are exhibiting signs of high anxiety, I find it hard to be comfortable around them. Oh my God... so maybe all the people that never seem comfortable around me, maybe it has nothing to do with them. Maybe they're just so damn uncomfortable with my anxiety that they don't know what to do, just like I don't know what to do when my friends are anxious. I don't exactly know how to use that information to change my behavior, and of course no one can completely rid themselves of anxiety, but maybe I can use that to try to understand that a) it's not about me, and b) There's nothing wrong with me, and not only will the world go a lot more smoothly if I can be me, but I will be able to connect with the wonderful energy of others if I am me. 

Oh, it is so horrible and wonderful at the same time. Because on the one hand, what a wonderful discovery! On the other hand, what do you with all the times, the majority of times, when being you is just too hard and you have meltdown after meltdown because of the sensory overload, emotion overload, lack of ability to connect with others, knowing that this is out there and not being able to connect with it?

But while I do have sensory and emotion overloads and meltdowns, I am doing much better at connecting with others. It is slow , so much slower than I would like, but on an almost daily basis I am finding at least one person who I have fairly meaningful connections with. Perhaps not every single day - if I say that I will get myself in trouble expecting it - but most of them. A five to 30 minute conversation is often sometimes not enough for me to deal with all the hours of the day when I don't feel connected, but in time I will hopefully find a way to make the feelings of connection last longer than when it is happening. 

What is most difficult for me is that my brain seems to "reset" itself when I go to sleep. All feelings of connection and calmness are wiped up the moment my brain is laid to sleep. I have to start from scratch the next day. Trying to find places where I can feel connected each day, it feels like murder most days trying to have the faith, hope and patience to find them. Especially because they're usually never in the same places. I know intellectually I will find a way to connect...somehow, but my emotions get extreme and the despair creeps back in. The first half of every day is almost always murder. Once I find that one connection, that one thing that makes me feel human again, that makes me feel a part of the human race, that makes me feel seen and heard and fills up my heart with enough energy to go on with the sensory and emotional onslaught of the rest of the day, I'm fine. But when that is , and what it is, is different every day. I can't predict it. I try to write it down when it happens - every word, every feeling - to keep it in my brain. It never stays as long as I want it to. But it makes me happy enough to get through each day and that is what matters, I suppose. Maybe one day..... all my isolated moments of connection will form a coherent whole. Maybe when I least expect it. Maybe the finished product will be marvelous, amazing, stunning. Maybe it is a work of progress in my soul. I hope .... it is done soon. 

Connection to music of course is the only thing that keeps me going in between the moments of connection with others. But connection to others is so much more important than connection to music. I've been using my Walkman a bit less this week and find that while in some ways it helps me feel more open to the energy and connection of others, which is good, in some other ways it leaves me even more raw and unprotected than usual and leaves me more prone to meltdowns . I actually wasn't able to use it for 3-4 days because of headphone problems and had meltdowns 3 of those 4 days. When I finally started to be able to connect to the music again, last night in a whole foods parking lot with a cop standing in the front probably wondering what the hell I was doing as I sang at the top of my lungs to the songs, feeling the edges of them, the emotions of them, the starts and stops and nuances, the tone and beat and rythm going straight to my soul and soothing all the broken parts..... it was a relief, to put it mildly. I can't put myself out there that much without something safe to come back to. Hopefully my headphone problems will not continue, but at least three days I was without them did show me how much I can survive without them... I just felt even more than usual that life felt like being in a meat grinder. I'm just thankful that Keith Urban's "Cop Car" didn't come on while I was there - that would have been an awkward song to sing around a cop. Seriously. lol. This part of being sensitive, emotional and needing to find a way to self-regulate may be hard for others to understand, but everyone needs an outlet, and mine just happens to be singing to country and 60s music in parking lots. I love the openness of parking lots. All the empty space makes me feel good, but being in civilization rather than nature seems to increase the feelings of connection. The Whole Foods parking lot makes me feel good. The sun hits it in just the right way. I have positive emotional feelings to the store. There are usually curbs to walk on, and this stimulates my vestibular sense and makes me feel so much more centered. I walked on a curb thingy around some trees that were planted, around and around for probably 15 minutes while singing. The trick is being open enough to your sensory needs and okay enough with yourself that you will do anything legal to fill them once you understand what you need to do to feel centered. 
Oh, but to be connected to and part of a flow - a flow of anything - instead of just trying to force your energy on something is really the only feeling worth living for. When a good song comes on the radio, which is what I listen to on the Walkman I carry, it shocks me out of my usual negative thinking and infuses in me a positive, connected energy (if I'm lucky). Sometimes this just makes me want to sing. So I do. The feeling of my voice, the vibrating of my voice as it sings every word, every nuance, connects with every word makes me feel so connected. It makes life feel manageable again. It shuts out all the bad and replaces it with good. It is the only thing I have found, other than the brief connections with people, that can. I believe it was Brad Paisley's "Alcohol" that came on to spur the good feelings in me this time (also slightly awkward to sing around a cop), and followed by things like Taylor Swift's "Mine", and the Four Tops' "Same Old Song," as well as Zach Brown Band's "Colder Weather"... songs that have a certain structure to them, easy to sing along to, very hyper-emotional, easy to lose yourself in. The safety of the structure of the songs... every note, every tone, every nuance exactly where you expect it to be, comforting you like a warm blanket. That's in part why I actually usually hate live versions... because they're not the same at all! I dig the sameness of studio music. At first... I said... I better restrain myself, there's a cop standing outside, singing in public is not a social norm. So I did...but I was still tense and not enjoying myself. I eventually gave up on restraining myself. I wandered to one side of the parking lot and I did my thing. I put myself and my ability to fill my emotional needs above what other people would think. I think, as long as what you're doing is legal!, that is the only way to survive. I need to own this life, myself and my differences. 

Okay, I don't think I could write a blog entry without tangents about emotional experiences to save my life, and this is no exception. I don't want to edit it because everything feels so valid and important, so I  will leave it. 


back to Pride

Where was I? So.... We spent 90 minutes, giving pamphlets to the organizations. Then we sat, tired but happy, on a bench nearby. Deering Oaks is such a freaking beautiful location to be, with the fountain in the background. 

Lee and I relaxed on a bench and ate our snacks after we gave the pamphlets out. At this point I became aware that the loud aggressive noise of the thing they called music was actually sounding familiar, although I could not hear the words from that far away. I asked Lee if she would mind if I went closer and went to investigate. IT WAS WAGON WHEEL! FOR THE SECOND TIME IN ONE WEEK I HEARD WAGON WHEEL SUNG LIVE IN PORTLAND. OMG! That song rules. I am going to have so many good memories of that song now. It is the ultimate sing along song. Oh, I started dancing and then other people started dancing, just like in the Old Port! Oh, it was so emotional and resonant and wonderful. Then they did Jackie DeShannon's Put a Little Love in Your Heart after that - an uptempo and really jazzy version that was a little hard to sing along with but not impossible. They did an original song, and then they did, omg, they did the best version of Sly and the Family Stone's "Everyday People" that I have ever heard. It might be the ONLY version I have ever heard live but it is still the best!

I was back with Lee at that point heard it and was like OMG. "different strokes for different folks and so on and so on and scooby dooby doo" it was also a more fast paced and uptempo version but in this case it really worked. the song was positively pulsating with wonderful positive amazing life affirming energy. I can't usually dance very much anymore due to physical issues but with all three songs but especially this one I did for at least like one line or length of the field... really danced, not just the mini version. Felt free... Felt like some sort of energy just took over and lifted my body and infused it with joy... and I danced across that lawn... like a bat out of hell... just pure energy and joy and love. So nice to be possessed by positive emotion instead of just negative once in a while. Oh, to hear that song and at a gay pride festival, so very cool. Such a wonderful experience. Of course they followed this song with RAP, the only kind of music that feels so intense and overwhelming to me that it can literally trigger a panic attack, and used to when I was a kid and it was played in the car. Message about how life has good and bad and goes between two extremes? Dunno, but we left and it was fine.

Hung out at gelato place with Lee a bit, got bus back. Got rainbow necklace and starfish necklace as well. So happy standing by door of apartment talking to her about future asexuality related plans. Feels so good to have SOMETHING IN COMMON WITH SOMEONE ELSE FOR LIKE THE FIRST TIME IN MY LIFE, well, just to feel this concreteness of being passionate about the same thing .Oh, connection.

So I am going to bed soon and making a pledge as I always do try to remember the moments of connection and use them to fuel the moments of anxiety and despair, and to remember connection is possible. To remember in my worst moments that feeling okay is not far away if I can get thru it.

That is the first time I have ever actually enjoyed Pride! =) Hopefully the first of many.