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 .
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.
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.
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?
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.
If you like this, please be sure to visit my other website, Accepting Asperger's. A lot of my older writing is stored here, including an editorial I once wrote for the Baltimore Sun. Click here to see it: Accepting Asperger's.
What's it really like to be a 20 something with Asperger's? On this blog, I hope to explore that question. But this blog is not just limited to an audience of people in their 20s - this is for anyone who ever wanted to know anything about autism. I plan to delve into the nature and experience of autism, and examine it from as many angles as possible. I would like to start a conversation between people with Asperger's or autism, parents of kids with autism spectrum disorders, and anyone who just wants to know more. Let's explore what autism means, together.
My goal is to start a discussion on and build a community of people affected by autism - parents and adults with ASD - so feel free to leave your two cents in the comments section of any post. If you're too shy for that, however, or want to speak to me personally, you may feel free to email me at KGoldfie@gmail.com.
Asperger's Book for Sale
Common Scents: Adventures with Autism and Chemical Sensitivity" is the story of a young woman's search for physical and emotional safety as she journeys through the mountains of the Cascades, small coastal towns on the Oregon coast, and out-of the-way towns in upstate New York. Along the way, she experiences things she would never have dreamed possible had she stayed in her Maine hometown, and begins to learn the power of human connection.
Common Scents is the story of the last three years of my life. It gives a gripping view of what it is like to experience the world as someone on the autistic spectrum, and some would say, is an entertaining travel story as well. Because of chemical sensitivities, I engaged on a three year journey for a place I could call home.
Comments from readers:
"The Asperger's element is remarkable. I feel that I understand my son better, so much better. I laughed at this part.... because I've stared at my son in the same way for the same thing." - mother of an Asperger's kid
"Your writing style is SO engaging and interesting. It brings me right into the subject and I always experience a little emotional punch towards the end. In other words, this is the third time I've teared-up reading your work. Kate, you've highlighted ALL the problems with how social skills are usually taught." - mother of ASD kid
"I stayed up entirely too late reading the first 14 pages. I can relate to so much of what you write. I really think you are expressing the true experience with MCS and autism in words that convey the experience." person with chemical sensitivity (MCS)
"Absolutely interesting, insightful and witty. You've blended together your three themes beautifully (Asperger's, MCS and travelling). It seems seamless."