Wednesday, October 29, 2014

Love Grows

I pulled myself out of bed, grumbling, wondering if I could possibly handle the day after having gotten so little sleep. Wondering if it was all worth it, to get up that early and leave the apartment. What would happen today?

The chair had a green plush bottom, and she moved it without me having to ask, knowing it was the only chair I'd sit in. I was unexpectedly moved by this gesture, so used to having to beg and plead and describe and explain my needs again and again before anyone would even start to consider them. Nonverbal gestures sure can be powerful when their message gets through.

I grabbed the wrong bag before I left and left without my wallet or keys. I was meeting a friend to get back a sweater I had left in his car, and thought I could ask him for a few dollars to get the goodies that were so essential to my being able to calm myself in public. He helped me without even thinking twice. I felt honored.

Embedded in a casual conversation with a girl who works at the coffee shop I go to, I asked her about her Halloween plans. She mentioned a party she was going to, and before the usual jealousy could overtake me, she said "You could come too if you wanted, but I know it would probably be a bit loud for you." Oh, the quiet joy, of hearing those words, words I wished for in nearly every conversation I've had in my thirty years of living, the simple words of being included. She was right, it would be too loud. But she invited me anyway. And my heart sung.

The conversation with the friend I met this afternoon at the coffee shop was flowing, and rich, and beautiful. It started in a natural place, and meandered around considering topics of mutual interest for a relaxed but rich 90 minutes until my friend had to go. It filled my heart, and was so much better than the brain dump or more one sided conversations I often get into with people when I'm stressed and need to vent. Oh, two sided mutual conversations, I love you! And I have had far too little of you. Oh, how I love conversations about how to have conversations. To me, there is nothing more important to consider than how to express and receive love for other people. How I love energy that flows between two people and doesn't feel like it gets stuck in one person or the other.

Frustrated that I had to go back to the gelato place after I left my sweater there, I pleaded and cajoled myself to walk. Feeling exhausted after so much activity and too little time to process, I was sure I was headed for some dismal uncertain emotional future. I took Congress to Exchange instead of my usual meandering walk, to get the errand over with as soon as possible. But when I got there, a young man with warm eyes was standing and talking to the girl who worked there. His energy was inviting, and I couldn't resist. Ninety minutes and two life stories shared later, he left, and I sat, trying to just absorb all of my feelings without judging them.

When I was ready to leave, it was raining, and I hadn't brought an umbrella. I panicked, knowing that the feeling of rain against my skin was one of the worst sensory experiences possible for me, especially for a 30 minute walk. But no sooner had I expressed this than the girl who worked at the shop offered me the store's extra umbrella, saying she knew I'd bring it back. I was so caught up in love. I was hungry and tired and loved.

That walk back home up Congress passed quickly, without any debate about which side of the street was less depressing or looking in windows being jealous of other people's lives. I sat and contemplated. I felt loved, and the idea occurred to me that maybe, just maybe this time I could remember that this feeling of love existed in the world even when I got up the next morning. It clearly happened nearly every time I left the building. Maybe I didn't have to spend every single day chasing after it and engaging again and again just to remind myself love existed. Could I feel it without being right in the middle of it? Could I? I didn't know. I still don't. But I started to imagine what that would feel like.

Today, I felt loved. And I want to tell my future self reading this that love exists in the world and can be accessed any time you want it. You don't need to feel needy and panicked and empty if you're not experiencing it all the time. You can remember you're loved even when it's not obvious at the moment you're in. People seem to express love given the chance.

As Alan Jackson sings, "Faith, hope and love are some good things he gave us," and what a fitting end to my day hearing that song on the radio was. Pain will always exist. It's not going anywhere. But maybe love is like a muscle that needs to be consistently exercised a while before you can start to feel it. Maybe it grows. Maybe, just maybe, it's blossoming.

Monday, October 27, 2014

Let's Not Wait So Long to Love Ourselves

"Most people take a lot longer to get as genuine as you are," said the woman I was working with, after observing me a for a few months.

Flattered, I nevertheless tried to figure out what she meant. Weren't people either genuine or not? How did time change that?

After a lifetime that included a lot of social isolation, I have spent several months interacting with a large number of people and trying to figure out who I am in the midst of them. I aim for deep and meaningful conversations, and each conversation changes my mind just a little bit about my place in or the meaning of the world - as all good conversations should. This is my conclusion from my most recent interactions: Not being able to interact well with idiots is not a disability.

 Allow me to explain, before you bristle at my word choice. There are other ways to describe it, of course. But none that would have as much immediate impact. None that would express the emotional intensity.

"Everyone in high school," my friend who happened to be my former guidance counselor told me, "sees everyone else through the lens of adolescence. Their perception is skewed." She went on to explain that when you're a teenager, you are almost by definition insecure, not sure who you should be. Your emotions are raw, and everything likely feels a lot more intense and scary. People have different ways of dealing with this. Some put on personas of pretending to know it all, personas of confidence and happiness. From what I can gather, that was true of the young man responsible for the most recent school shooting in Washington state. Everyone seems like they have it together, but inside, they're scared and confused.

Some are the artsy type, that turn to writing, music or theatre to express their emotions. Some turn to counter-culture styles of dress and behavior, such as gothic or wearing all black. Some bully others to feel better about themselves. Some drink or do drugs. Some get depressed and try to harm themselves. But everyone feels these emotions, although they try to hide it. Most pretend not to.

I find myself at age 30 doing a post-mortem dissection of sorts to try to figure out who I was, so I can figure out who I am now. So I can figure out where to go next. I didn't put on a persona in high school, or now. I didn't pretend to be confident. I didn't try different ways of pretending to be other people to figure out who I was. I just.... was me. I was me. And I was completely bewildered by the people around me.

Who was I? Well, as far as I can remember, the pre-adolescent me liked cats. A lot. She liked talking with adults. She was very emotionally expressive. She liked to read and write. She was very highly affected by what went on in her world and spent a lot of time thinking. She liked to play word  and board games with the babysitters hired to watch her. She was very engaging with those who engaged her.

But among her peers, she was quiet, and, again, bewildered. For a long time, she didn't really even notice these other kids were there, unless they posed a threat to her. Which was often, unfortunately, but they were mere annoyances. Books were her friends. When she did finally notice, as a teenager, them having fun being with each other, she wanted in with that too. But she had no idea how to get it. They lacked a common language. Her peers talked in slang and seemed to go out of their way to avoid talking about how they felt about anything. She would write pages and pages about her feelings and thought a lot. They had no common interests. She felt threatened by their bravado, their pretend confidence.

She concluded there was something wrong with her, because she clearly couldn't communicate with these other beings that she was forced to spend all of her time with. Look at the way they communicate, look at how happy they are, there must be something wrong with me, she thought.

Meanwhile, a poem was written about her in a school literary magazine, wondering "I wish I knew who she was, she looks so happy." This the same year she spent her all of her time on depression websites, convinced she wasn't who she was supposed to be.

Is everyone just looking at each other wishing they could be each other? Why can't we be more honest about who we are, so people could really know us? We'd feel more fulfilled, and others would too, because they'd stop being so jealous. We could all stop being jealous and realize that all our lives have their ups and downs. We could understand what "real" is, and not compare ourselves to characters in TV shows and movies living fake, airbrushed, perfect lives.

I've always been able to communicate well with adults. As a kid and as an adult myself. I just can't communicate well with people who are insecure and pretending to be someone they're not. I am deep and real and sincere, and I want honest communication. I was not even really aware the rest of the world wasn't like that until recently.

I communicate very well with authentic people. Is it any surprise I didn't socialize well with high school or even college aged kids? Just by virtue of developmental stage, they are insecure and inauthentic. So defining myself by how well I socialized with that particular group of people is lunacy. It's one group of people. That's all.

When I finally got a label of Asperger's at age 21, I clung to it like a life raft as an explanation for why I was so *wrong*, why I stuck out like a sore thumb. But nearly ten years of clinging to it is beginning to seem like too much. Self-acceptance would be a much stronger, more effective drug if I could get it, than a continued focus on my disability label.

Sensory sensitivities, yes. Different ways of thinking? Yes, but so does everyone in some way. Lack of social ability? I guess that depends on who's doing the judging, but I'm going to go with no. Sometimes I wonder if I am actually ahead of where most other people are, not behind. Maybe I have to wait for them to catch up, or maybe I just have to keep trying as hard as I can to find ways to socialize with the ones who have already caught up. This usually ends up being people twice my age, people who are not usually looking for friends my age, and this frustrates me greatly. Perhaps that reality will change in time.

I don't care who you are, age, gender, appearance, interests, occupation, or background. If you're authentic and show genuine emotion, about anything at all, I want to talk to you. I have a love affair with real people. Why don't you all join me in figuring out how to love yourselves, because while it might take a while, the combined light of all of us shining the light of who we are will be enough to light up all the whole planet. By showing who we are, we can help fight depression, loneliness, alcoholism, anxiety, suicide attempts, and a variety of other mental and stress related physical health conditions simply because people will know, perhaps for the first time, that they are not alone.

That's all it takes. Having the courage to say what you REALLY think, not what you think is appropriate. Having the guts to show your emotions, not wonder if they fit the image of some robotic Stepford Wife that Hollywood has brainwashed so many of us into thinking we should be. Do you think you can't be liked because you're overweight, labeled with some disability or another, short, a member of a marginalized race or other class of people? Guess what, you're part of the world too. Step up and let your light shine, because when you proudly show who you are, you give someone else the courage to do so too. One by one, we can all step forward and show who we are. One by one, we can build a world where we walk around saying "Hey! I know you! You're just like me!" instead of "Did you see what she was wearing?" or "I can't possibly be liked by another person unless I have those diamond earings." Somehow I think this new way will create just a little more happiness than the old way. Happiness is good for the planet. Happiness is good for our survival. For those who care about making money and economics... happiness is good for productivity, too. In fact, whatever cause you care about... happiness will help it.

Happiness starts with letting your light shine, with finding a way to come to terms with who you are and then letting the people around see your passions, thoughts, desires, personhood. That hole in your heart that feels empty so much of the time... you may find it filled when you let your light shine. You may be hurt sometimes too, but it's worth the price.

I often find that older people tend to be more genuine, perhaps because they've had more time to conclude that playing games isn't worth it. They sometimes feel they have less to lose by showing themselves. I beseech anyone reading this, let's not wait so long to love ourselves.

Friday, October 17, 2014

Thoughts on Jewish Community

 I have recently started going to a local synagogue to rediscover my Jewish roots and community and wrote this for their website blog (hopefully). I wasn't going to post it here but then decided to. Slightly off topic, but still about finding community, so. Fits well enough.

My First Simchat Torah Celebration
 
The blue and white letters of the small paper flag attracted me. "Rejoice and Be Happy on Simchat Torah," it said on one side, with festive colors and decorations on the other. It felt deliciously rebellious somehow. Maybe it was yet another vestige of growing up in a town where I didn't see a single other person like me. Seeing Hebrew printed on flags, seeing a flag that celebrated, in two different languages, a holiday I had never even heard of a week previously excited and delighted me. It seemed somehow long awaited proof that I existed. I hadn't realized how much I was missing until I found it. What a perfect melding of the commercialism we are all so much a part of and the  Judaism I had only been aware of in books in this one simple paper flag.

Each generation rebels against their parents in their own special way, and for my parents, it was  eschewing the strict religious rituals they had grown up with. For me, it meant taking tentative steps to discover all that I had never even been told existed, and taking steps to try to figure out if there is  a way to make it meaningful and relevant for me. Just a small paper flag, as commercial and pedestrian as you can get. An item that probably cost a few pennies to manafacture, the kind you might see in Party City along with all the other party merchandise I had loved so much as a kid. But this small paper flag was not just any flag. It had Hebrew on it. It represented a universe I hadn't even know existed. It represented the promise of discovering a new world, and the hope of there being something in this world that would be useful to me. I stuck the flag on my kitchen counter so that I would be reminded of it every time I passed by.

When I looked at the calendar of events for the synagogue a few weeks ago and saw the words "Simchat Torah," I thought it must have been a typo. What does that mean, I thought? What could that possibly mean? I had to google it. When I learned what would happen, I asked if I could take pictures and write a blog on it.

Simchat Torah is a holiday where people dance with Torahs. I made endless comparisons to "Dancing with Wolves" as I told my friends what I was planning on doing. The humor was mostly lost on them. For anyone who has not been to a Simchat Torah celebration, the Torah is unrolled all the way out. People stand in a circle and hold it, and the rabbi talks about the most important parts. A klezmer band plays traditional Jewish music and people dance with Torahs before that. They hand off the Torah to each other and dance in a circle, holding hands. As squeamish as I am holding hands, I made myself try it for a few minutes. My conclusion is that I'm better at documenting group dancing than being a part of it. It is a joyous event with lots of laughter and celebration.

The night started with kids from the religious school being called up for what is known as Consecration. This is an event to celebrate the official beginning of their religious school, and usually done for the first graders. All the kids got miniature Torahs, which were very cute, as well as a certificate to help them go to Jewish summer camp and a letter addressed to them. The kids were adorable.

People were upbeat and happy, and since I was focused on taking pictures instead of trying to figure out how to be a part of things, I was happy too. The particular religious meaning of the ceremony is still new to me, but the significance of being surrounded by a very specific kind of Jewish culture was not. When I talked to my dad on the phone about it, he understood that while we have never been a particularly religious family, Jewish culture is something that you can sometimes long for even when you've never had it before. Or perhaps Jewish culture is bred into you even in a family that doesn't celebrate any but the most popularized of holidays without you even realizing it, and being surrounded by people who are part of this culture feels like coming home again even when you don't know the most basic of religious principles. Either way, I will save my dime store Simchat Torah flag and wave it in my friends' face when they come over to visit, proud that I finally have a community I can be part of.

The Importance of Role Models for Socially Different Kids

The Importance of Positive Role Models for Socially Different Kids

About two months ago, I started going to a local synagogue on a regular basis to participate in services. I did so mostly out of a desire to find some sort of community in a life where I felt more than a little adrift. I am still working on the religious aspect of it, but in the meantime, I found something I had never expected to find while at this synagogue. I found a new way to look at my past.

I was diagnosed with Asperger's Syndrome, an autism spectrum disorder that is characterized by problems with social interaction and sensory processing issues, when I was 21. I had been a straight A student in my suburban high school, but had always struggled socially. I didn't make my first friend until I was 16. My desperate pleas for answers as to why I was so different fell on deaf ears when I was in school. There were no role models for difference in my high school. Doing well academically was prized above all else, and if you got good grades, then no one would ever consider that you would need any other kind of help in any other area of your life. Especially if you didn't have behavior problems. Anxiety apparently was not considered a problem worthy of intervention.  

I didn't talk like the other kids. I didn't have the same interests. I didn't dress the same way. I could see so clearly that I was different. Being different in itself is not a disability. Of course not. But there was no one around to model difference in a healthy way and tell me that. There were no examples of people being different and proud. We were homogenous, racially, religiously, and in every other way possible. You didn't see people with disabilities, or even people of other races or backgrounds. I concluded something must be very wrong with me, because no one could ever put words or labels to my experience.  

I sought solace on the Internet. Since I didn't have the language I have now - Asperger's and autism - to use to find like-minded people, I hung out in mental health and depression communities. While the support was better than nothing, it was far from the most appropriate and healthy role models for a 13 year old kid to have. I struggled with thoughts of self-harm for many years after, because it was the only coping method I could find offered to me in the communities that I was a part of. No other communities were accessible to me. I had no extracurricular activities, no mentors, no people of any kind that could point to me ways of actually enjoying the world, so I ended up spending all my time with people whose only goal was to survive it.  

Now, nearly ten years into researching and participating in a wide variety of autism and Asperger's communities both online and off, I am so grateful for the language to describe who I am. I am so grateful to have had the opportunity to meet people like me in several different cities, and to see people living happily with differences of all kinds. I am still blown away when I see representations of myself in other people, because for so long I didn't think any one else like me existed. This simple language and knowledge that there are others like me has given me the ability to live my life with a level of confidence and pride that simply would not have been possible before.

I see such a difference in kids who were raised knowing about their autism from an early age, who had supportive parents and positive role models. They're aware that they're different, but they seem nonplussed about it. They don't seem as likely to fall prey to the depression that comes from not knowing what's wrong with you. They understand and appreciate their strengths, and have a dazzling array of resources to choose from to combat their weaknesses. They understand that slow and steady wins the race. They're comfortable with who they are.

At the synagogue I've been going to, I've met probably close to a dozen people from my hometown, which is just far away enough and un-Jewish enough for that to seem shocking every time it happens. These people tell me stories of pulling their kids out of the high school there because they feel that there are not enough resources and role models for their socially awkward, different kids. I am learning that my story is not unique. It makes me wonder if there is anything I personally can do to prevent my fate from happening to a new generation of quirky but wonderful kids whose only fault was to be born a little different in a society that doesn't know how to deal with difference. I want these kids to know that there are other people like them, whatever their difference may be. I want them to know that there is more to life than getting A's on a test. I want them to know what it feels like to be valued for who they are. Whether it be with more extracurricular groups, or assemblies with speakers who have some sort of difference,  whether it be reading assignments or volunteer opportunities or what have you, our students need to be exposed to other ways of living and experiencing the world. You don't always know when someone is desperately searching for a role model for a difference that isn't always apparent to you. Everyone should have the opportunity to feel good about themselves. Book learning can be picked up at any time in one's life, but the groundwork for positive self-esteem and self-confidence is something that is awfully hard to recover if not built from an early age. Schools need to work at least as hard at creating emotionally safe environments for kids to grow in as they do at teaching academics, if they want all of that academic knowledge to be used for something. What good is factual knowledge in a mind that has been broken emotionally? There is hope with exposure to different role models.  








Thursday, October 2, 2014

How to Make People Feel Heard and Seen

Amazing article , I like this paragraph in particular
http://www.decipher-morgan.com/2014/10/what-its-like.html

"Morgan took a deep breath, pondered this question some, and then said, haltingly, "People think I don't listen, but I do. Teacher always says, 'Pay attention, sweet boy!' but I am paying attention. It's hard. I pay attention to everything, all at the same time. I can't pay attention to just one thing... I can't always use my words."

This is how  I feel much of the time. There is so much coming at me. I can't DO half the things I want to do because I can't focus on the right things long enough. But I get a lot out of what I do focus on. At the grocery store last night I saw a woman had a notebook with a list on the conveyor belt, on beautiful rainbow paper and the most beautiful handwriting. I commented on how beautiful the paper and handwriting were to her. I noticed she said "For Speech Tx room" and knew that must mean speech therapy, so asked her if she was a speech therapist. She said she was. We got into a conversation on autism, in 5 minutes with a random stranger because I noticed her handwriting. As she left she said "Thank you so much for complimenting my handwriting" in a really genuine emotion tone of voice. So maybe, sometimes having too much attention to detail can make people feel heard and seen. That's not a bad thing.

Another night at the same store, a woman was having a seizure of some sort out front in the parking lot. People gathered around to see if they could help. I forget the details now, but it ended in me having a conversation with one of the employees there about autism, and learning about a possible place where I might be able to volunteer with people with disabilities because her son has autism and goes there. Being aware of what's going on around you... sometimes it pays.




Friday, September 19, 2014

How to cope, how to fit

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

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

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

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

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

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

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

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

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

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

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

***********
Something related from Facebook I wanted to save

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

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

*****

Saturday, September 6, 2014

Speech



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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, August 27, 2014

Improv is the Answer


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

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

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

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

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


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

Monday, August 18, 2014

thoughts on depression

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

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

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

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

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

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

Sunday, August 17, 2014

Seeing Your Strengths

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

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

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

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

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

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

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

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

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

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