Friday, November 7, 2014

The Danger of Safety

The times when I truly fall,
 I astound myself with how fast I catch myself
The times I am truly in trouble,
 the solutions seem to come almost easily
I seem to move with decisiveness, clarity, purposefulness
I know what to do, I know how to do it, get out of my way so I can do it 
Don't believe I can? Just watch me and I'll do it. 

Overwhelmed and free falling? Grab on to the radio and feel safe again. 

Can't stay in your home state because there's no fragrance free living situations? Find someone you've never met online and move across the country to a state you've never been to, a town you've never heard of, because you know no life will be possible unless you are physically safe. And no matter what happens, you know you're doing the right thing, because you know you have to be away from fragrances to have any sanity. You don't question your decisions. It's stressful, it's survival mode, but you're confident. You curse the world in the bad times for your difficulty, and struggle with the newness of towns and cultures you've never seen, but you laugh and write blogs about what you enjoy and poke fun at the things you don't and you know you're on the right path. 

But, oh the danger that comes in safety!

In a living situation free from people to fight with, free from most bothersome sensory stimuli, your body cannot relax. Your mind cannot relax. It cannot trust safety, not after seven years of running, seven years of trying to find it. It needs something to worry over, maybe, it needs to feel like IT IS PREPARED ALL THE TIME. After all, you never know what crisis looms around the corner, right? It hyper-reacts to the smallest of stimuli, because that is what it is there for. Your mind has one function, and one function only. To sound the alarm. To make you take action. To protect you.
(But what about human connection? Isn't there room for that somewhere? I have a heart and soul inside this physical body. It needs nourishing. It has been lost in the fight for physical safety.) 

There is more to say, but due to energy constraints, I will just say that
this obsessiveness over smells and physical safety is without question getting in the way of me having a life. I hope to find a way to break through it eventually. 

Friday, October 31, 2014

Listening With Your Heart

I just finished reading a wonderful book called "Love, Anthony" by Lisa Genova. While I originally picked it up because it was about autism, it is actually about so much more. The author artfully combines the themes of loss, grieving, autism, and finding the strength to redefine your life after a tragedy. I found myself stopping every few pages to reflect on what I had just read and try to figure out how I could apply it to my own life.

One of the more meaningful passages occurs when the main character, on a whim, stops in a church and knocks on the door of a priest, after lighting a candle for her dead son.

She braces herself to hear the same tired platitudes she had heard a million times before, braces herself to be summarily dismissed after some trite statement that mean nothing to her. After all, what could anyone possibly say or do that would lessen the pain of losing your son at eight years old? She asks the priest how she could possibly believe in God. How she could possibly find God in a world that would allow that to happen. "He's not answering my prayers," she said.

The priest tells her she won't hear God if she tries to listen with her ears. You have to listen with your heart, he says. It takes her a while, but eventually she figures out how to listen with her heart.

When I got home from services at the synagogue I started going to a few months ago tonight, I wrote to myself, "I found myself humming along to the songs even though I still have no idea how to even approximate the words." For once, that felt like enough. I felt connected and peaceful and tried to focus on that and not on the other less harmonious thoughts rattling around my brain. I felt a sense of positive energy and, for a while, couldn't stop smiling. It's so much easier when you're not obsessed with how you don't know the words, or thinking about what other people have that you don't. I was trying to listen with my ears, but found instead how meaningful it is to listen with your heart. Your ears and brain will constantly judge "Am I doing this right?", but your heart knows what's right. When you're calm enough, if you go with your heart, you will get to the space you were meant to be in.

I often have trouble getting into this mental space of being able to hear with my heart. Usually negative emotions keep me from hearing anything at all, with my heart or my ears. When I consider something, I analyze it with logic borne of my experiences, and often have trouble imagining something that I haven't experienced exists. That's not where love exists, though. Love is a feeling that you have to get past analysis to feel.

 When I experience the feeling of connection with someone else, I calm down, and my heart opens up. I can feel the love and spirit in the energy around me. Then, at least for an hour, I feel filled up and smile. I don't believe in a judgemental God, but I believe in the love of other people. Feeling connection in the singing of other people seems like a good use of a religious space to me... regardless of whether or not you know the words or religious laws.  

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

"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


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.