What is joy? What is connection? When you're talking or writing about autism, that question comes up a lot. Simply put, autism spectrum disorders, including Asperger's, are a disorder of human connection. Or are they?
My definition of connection is two people sharing emotions or experiences in some meaningful way.
The world has a very set definition for how connection will look. The social norm is to express connection with others with a handshake, a hug, a glance of the eyes, or to do so physically. We have set rules for how much emotion is proper to show at any given time, and how much of yourself you are allowed to show any given person at any given time, depending on how well you know the person and what their relationship to you is.
Maddening rules, really, for someone who just wants to be themselves.
For a year and a half now, I have attended a self-improvement meet-up group where people talk again and again about their struggle to be themselves, to be authentic, to be vulnerable.
They talk about how hard it is to share their emotions, to believe that anyone wants to hear, to be true to themselves.
And there's me. I can't not be true to myself. When I talk, it is from the heart, every time. When I share, I search inside myself for whatever emotions might be lurking there and bring them out in full color. When I talk about myself, I don't edit, except occasionally for length and clarity. When I experience joy, I yell out, I scream out, I sing. I never learned the social norms that told me that I had to hide myself. I never learned the rules that our society dictates about social connection.
Sometimes, I feel like that's a bad thing. I look around me and feel that everyone is connecting on a level I will never reach, because they know the rules. And I want to be one of them, chatting, laughing, using casual social touch to show connection.
But other times, like when I read Jess's blog (adiaryofamom.wordpress.org) or when I go to this meetup group and listen to these stories, I wonder, I just wonder if my social isolation during my formative years might not have protected me from a worse fate - the fate of learning how to be everything but who you are. The pain of going through a life putting on a fake self and never really truly experiencing it as yourself. When I experience joy, it is nothing but pure. I have been called a "breath of fresh air" more times than I can count, and people - not all people, mind you, but enough - seem to like and be comfortable with my openness.
Connection can come in many different ways, and if you look closely, you will see that those on the spectrum are connecting intensely in their own ways - perhaps to the flash of sunlight on the carpet, to a song on the radio, to the feeling of a piece of fabric - but connecting nevertheless. When they share their feelings and experiences with others and find that others share them, then the connection is intense. But we have to be willing to see things in a different way, to get inside the head of someone who doesn't see things the same way we do, in order to share in their connection.
This world wasn't built for people who are open and direct, who live their lives with their heart on their sleeve. Most people on the autism spectrum are exactly this way, because they never learned the social rules that tell us to be any other way. As a result, they get hurt, again and again, and fail to fit in. They develop all kinds of negative self-concepts about themselves, because they think that failing to fit into a world whose rules were not taught to them means that they are horrible, awful people. But the truth is that some people just operate differently. And we can learn from them - we can learn about how to be ourselves, how to be truthful and honest in our conversations, how to let our emotions out and experience them as ourselves - and when we do, our connections with others will be that much stronger, that much more intense and meaningful. Maybe those with autism and Asperger's can teach us about connection after all.
The other day, I was on a bus when I heard the tail end of a conversation a man was having. I surmised from the bits and pieces I got that he was talking about his son, who has some sort of development disorder. And then I heard the words, said so casually by this rough and tumble looking man on a city bus, "We have to protect and nurture these kids, because when they're all grown up, they're the ones that are going to freaking change the world." Said so casually, in such an unexpected environment, but his words touched me to my very core. Validation - we need to nurture, encourage and help those with the label of autism, Asperger's or other developmental disorder, not treat them as different or wrong. Because their strenths - their honesty, their ability for deep thinking and perceptiveness, their pattern recognition abilities, their loyalty and dedication to a cause, their intense interests and tendency to treat everyone equally no matter who they are - are going to change the world one day.
If you liked that, you will love what my idol, Jess Wilson, has to say on her latest blog "Diary of a Mom." I will reprint part of it here ...
""My daughter is different. We can teach her appropriate and expected behavior until the cows come home (and we will, for, like it or not, it is in many ways the on-ramp to participation in the community), but she will always be different. One ‘behavior’ will give way to the next and the next again, for her expression of her internal world is not the same as that of most other denizens of the external world.
We can do our damnedest to educate those around her – to sensitize them to difference, to introduce them to other ways of thinking, feeling, experiencing the world. We can appeal to them for empathy and compassion, for recognition of shared humanity and God-willing, convince them to join us in a celebration of the glorious spectrum of human diversity. And we do. Jesus, we do.
And, while we do all that, we can enjoy the hell out of her, not just despite her differences but sometimes even BECAUSE of them. We can revel in the purity of her joy and learn from her how to express our own feelings without pretense, without filter, without worry for how they will be received. We can follow her on a journey that teaches us about ourselves, about our world, about how we connect with one another — and about just how flimsy our social constructs really are."
In short, we can live inside our fear for the future or we can say to hell with it and run alongside her as she blazes a path that leads us unwittingly to our own self-acceptance as we guide her to hers.
And we can invite everyone with whom we come into contact to join us on that journey. An appealing invitation, I dare say, for it leads to a place that is bathed in hope and love and a true sense of connection with one another and ourselves.
A place so damned happy you can’t help but squeal."
That long used funny statement came surprisingly true tonight when I finally got to read my poem at the Open Mic night at the Community Television building.
I confess, I never liked poetry much before. I found it too limiting and obscure. Poetry takes so few words to describe something that I would usually prefer to take several pages to describe. Many poets use references and analogies that are so obscure that I can't even figure out what they are trying to say. But nevertheless, three weeks ago when I attended my first Open Mic night, I found myself trying to write a poem. Sitting in a chair in the back room of the CTV building, I scribbled some random thoughts on a piece of paper that I hoped approximated a poem. Inspired and encouraged, I wanted nothing more than to get a chance to go up in front of people and share something with them. (I know, I know. Most people hate public speaking. I have never been and never will be "most people." Sometimes, that is good. Like tonight.) I tend to be good at everything most people hate and hate most things people are good at - go figure. The world needs all kinds, right?
Anyway, I didn't get to speak that night, nor the second open mic night I went to two weeks later (although I was #16 on a list of people that cut off at #15 - how frustrating!)
But somehow, that little piece of paper with what I was loosely calling a "poem" remained in my bag for the next three weeks, not once getting lost in the fray of all the loose papers, money and trash that fills my bag. I'm quite sure nothing *else* has ever survived in my bag for that long... It was a sign. It was meant to be. Or maybe I was just looking for encouragement. Either way, I got to the CTV building at quarter of 7 to sign up tonight, position #6, and then nervously awaited my turn come 730.
(In between I walked to the East End and back since I had left the bag with the poem at the Jewish Museum, which was the second time I had lost the bag in 2 nights.)
The Open Mic night was far better tonight than the last two times. Which is good. For reasons I will not enumerate here. Someone played a decent song on the guitar to open, and the person before me actually did poetry as well - and did it really well. In fact, in my entire life I have never seen poetry read so well. Not that I've spent much time listening to poetry being read, but yeah. The words were so vivid, so emotionally resonant, so THERE. I never knew words could have so many meanings and feelings when spoken aloud. It was a beautiful and entertaining reading.
The second poem (the first was a fun one about olives) actually talked, in a roundabout way, about humans finding their way on this planet we call Earth. It was a perfect lead-in to my poem. It was the first time in three weeks I had heard anyone talk about anything serious or even do poetry really so I was relieved he set the stage so well for me.
Before I go any further, I will reproduce the poem here. Keep in mind I am not a poet or used to writing or reading poems, so I take no responsibility for whether or not you like it. Um, yeah. There's that great self-confidence talking, lol.
Lost behind the glass window
Inside, looking out
Stuck, how do I get out?
How do I connect to the world?
Is there anyone in here but me?
High school, hiding behind a Walkman
College, forever the odd one out
Surrounded by others talking, laughing, but I can't touch them
I look out, but there are walls
Thick walls I can't break through
Life is survival
Seven years, isolated
Music my only company
Connecting to the world through the computer
Longing to get out
The tide changes
I walk into a room
I meet people who speak my language
I can reach out and touch them
You are my people
You speak my language
You see who I am
They call it Asperger's
I call it coming home
I can reach out and be seen
They call it Asperger's
I call it coming home
Finally, the world is open to me again
So yeah the middle needs a little work I think, but not bad for the first time and scribbling it on the back of a whole foods cafe menu.
Of course the way you read it matters - I read slowly, carefully, being careful to put emphasis on the appropriate words. Trying to make my facial expressions match what the words were showing, and my voice match it as much as I could. If I hadn't been holding the papers, I would have used my hands to gesture a little bit as well.
When I got up there, of course, it was so bright - the lights were on you - I hadn't expected that. But I thought, well just go with it. The lights were bright you literally couldn't see the audience a few feet in front of you- which might have been a blessing in disguise. I made a joke about the groundhog and the winter and then got into the poem. I remembered that above all, I should sound confident, strong and steady. Emotive - that's a good word.
When I got off the stage, the guy in the front row who I had been talking to earlier said to me very earnestly "You just made it incredibly hard for me, as a poet, to come after you." What a compliment! What an honor. I thanked him and sat down. A middle aged guy came over and said "Thank you" and shook my hand. More feeling very honored. Someone told me that it "painted pictures in his mind" and one woman told me "Your poem was awesome. I almost cried." Such a nice feeling. As I said the quality of the acts was much better than the previous two times and was enjoyable to watch. I really like listening to the guy with the Russian accent who hosts it. He could be reading the phone book and still probably be fun to listen to. People did singing - more guitar than ever before - and some other things. I stayed until 930. I ran into a guy I knew from whole foods who worked in the deli, someone I've always enjoyed chatting with. He did some nice stuff on the guitar later on.
So yeah, I think I'm addicted now. I think I'm addicted to being in front of a microphone. I want more! Soon! I will have to write some more poems for next week =)
Margie says you have to go where your heart takes you and my heart dictated the poem above. I have a feeling (or a hope anyway) that there will be more where that comes from.
Now if it can only give me more ideas for this presentation I am trying to develop (also on Asperger's) =)
Oftentimes, I hear snippets of interesting conversations on the bus. If I'm lucky, I'm even part of those interesting conversations. But the most interesting ones are often the ones I'm not part of.
True, most of the time the conversation is rather pedestrian. But today I was on the bus, listening to my music and trying to center myself, when out of one ear I heard something that sounded interesting, so I tuned in.
The man, a somewhat rough and tumble kind of guy who looked like he had seen better days, was saying something about his son, that I couldn't quite catch. But I heard the words "too young to diagnose" and then I heard him say "People like that, we should protect them and nurture them. Because when they're ready, when they're grown up, they're the ones that are going to freaking change the world."
Now, he could have been talking about anything, of course. But I don't think it would be out of line to interpret that might have been talking about autism spectrum disorders in some way. Especially because I can think of few other disorders in which it is more difficult to diagnose the younger you are, and let's face it, the language just points to some sort of developmental disorder.
So I was touched. I was very, very touched that this hardscrabble, rough looking man was talking so compassionately and so encouragingly - hell, maybe even in awe of and in complete and total respect of - people with developmental disabilities. And I thought that wow, if only everyone thought the way he did. Hell, if only I thought the way he did about myself. We might take a little longer to blossom, we might need a little (or a lot) extra help when we're younger, but give us the right circumstances and we'll change the world one day.
Some days, you just never know what you're going to hear on the bus. Wisdom comes from unexpected places sometimes.
It started with a gifted storyteller and a Bruce Springsteen song.
It ended with a wonderful display of emotions and soul and another Bruce Springsteen song.
In between, there was more connection, shared experience and shared humanity that I would have ever dared hope to find.
The occasion was a meet-up of the Where Would I Be Without Me group in North Yarmouth, Maine. I had brought some marshmellow Peeps to lighten the mood because I figured I was getting together with my peeps. Right? Come on, admit that you thought that was funny.
At any rate, we had six people to start, and eight later on. Less than the last few weeks, which created a more relaxed, open atmosphere.
So I've been going to that meetup for 18 months but this was the first time I felt like I shared something that everyone else could immediately relate to. Oh man, but it felt good to have everyone connect to what I was saying! It had been at least 90 minutes by that point and the new woman, who had come all the way from Rockland (90 minutes away for those of you not Mainers), said while I was speaking "This is what I came to hear." I felt so honored! What I was talking about wasn't so different than what I usually talk about but for some reason people grabbed on to it. Maybe it was because for once I wasn't phrasing it so much in the terms of Asperger's or MCS, or in terms of what I could or couldn't do but more in terms of "I've been wondering about..."?
I can't remember exactly how I put it but I said I had been thinking about connection, and about how connection seemed to me to come from the sharing of emotions. I talked about how sometimes when people's emotions are invalidated when they are younger, they don't learn that other people share the same emotions as them - and then they feel very isolated and unable to connect with others. They lack the ability to even begin to understand that their emotions are valid and so they also lack the ability to understand others have similar emotions as them. I think this is rampant among people with autism. They experience and express their emotions and feelings differently, so invalidation runs rampant.
Someone else brought up feeling rejected when someone doesn't acknowledge what you say, which is actually where I had wanted to be going with my statements but had completely forgotten that part of it by the time I got there! The theme of "how do you not feel rejected when someone is not properly acknowledging your statements" got a lot of people chiming in, and at least two or three people said "This really resonates with me." I'm sitting there thinking "They're saying this about something *I* said??" and of course very happy about it.
Many people struggled with feelings of invalidation or rejection. Many made the point that you don't know what place the other person is in when you are talking to them, and they might not be ready to receive what you are saying, so you shouldn't take it personally.
Validating yourself was talked about but I still believe that other people need to fall into this equation somehow.
We talked about how emotions are energy, and people exchange energy from each other - back and forth - because life is dynamic and always in motion, and so emotions are one way people connect to other. M made the point that physical contact such as hugs is another way people connect or share energy with each other, and she mused that I was so good at connecting with people emotionally but seemed to shy away from all physical contact - while most people are the opposite, desiring physical contact but not being very good with emotional sharing. She is right of course and I think that the part of my brain devoted to emotional sharing and emotions in general is far larger than the part that would want physical contact, which I am hypersensitive to (maybe that part of the brain *is* just as big but the physical contact is too overwhelming for me to process). But different, not less - it's hard living in a world where this is not the primary means people use to connect, of course, but it's not impossible.
We talked about how anger was just a stuck form of energy that needed to be released. If you can get angry and let it out, then you can move on and realize what it was about. Keeping it in doesn't do anyone any favors, as long as you let it out responsibly.
Everyone had something compelling to share, and opened up more than usual. It was inspiring and encouraging. One common theme was that people talked about feeling more alone than usual - even before I brought up the topic of connections and so on. So, there was far more of a common theme tonight than ever before. Usually, it is 6 or 8 relatively disparate stories with maybe 2 or 3 being like each other. But not tonight. Everyone was sharing the same energy, had similar cross purposes, feelings... I felt like part of the group tonight. Usually I just feel like my stories are just so out of line and so different from what everyone else talks about, and it drives me crazy! But not so tonight. I was and am thankful. One person hugged me when he left. It was a nice energy tonight.
One of the first people to talk used Bruce Springsteen in a story he was telling to illustrate something. The very last person, nearly three hours later, mentioned that when he was really upset he just wanted to hole up in his room listening to Bruce Springsteen. And the circle was complete...because baby, we were born to run... towards each other and towards building a better world for all of us to live in.
Well, I had so many thoughts circling around my head, I thought I'd try to make them a blog entry instead of a long Facebook status like usual. But I can't promise polished writing... Just random thought journaling as is my usual habit =)
I'll skip to the end of the day, although the beginning and middle was no less noteworthy. I left at 2 and didn't get back to 10. Long day but full of interesting things.
After my abbreviated and somewhat frustrating therapy appt, though, I had spent every last ounce of energy I had. I decided to go to the gelato place as I had a lot of time to kill before Rob came and didn't want to spend it all in Whole Foods. Talked to the girl whose company I enjoy there but then was too tired to do anything but sit and listen to my music and of course sip on my gelato...
K, though, who works there is so wonderful, she listens to me talk, and when I left and tried to pay for my gelato, she said to me "It's on me tonight. You deserve it!" Oh man, that just melted my heart. It meant so much to me, not the not having to pay but the gesture. It showed she cared. I love that . It made me so happy, I perked up immediately. Thanks K!
I had been a little depressed because when I get tired and start looking around at everyone there and playing the game of either "They're more functional than me" or "They're more social than me, they can converse better than I do, look how natural their conversation is, look how easily they talk to each other" The latter is by far the most dangerous of the two..... I thought to myself, NO WONDER I was depressed in college, I was surrounded, no completely immersed in "triggers" ie people who triggered these thoughts (x100 in intensity because it was even before the Asperger's diagnosis) EVERY SINGLE DAY! In fact nearly every single waking moment. I was trying to be strong enough to resist the thoughts and comparisons, reminding myself of the chapter in David Finch's book where he covets his neighbor's (yes so stereotypical do not covet your neighbor lol) seemingly perfect life, and his wife finally convinces him that what they have is good for *them.*
I was reminding myself of the whole toaster vs hair dryer brain analogy and everything else I could think of. Only worked about 50%. Which is better than none. Sometimes you just need to leave. Giggly girls my age are a sure trigger for my insecurities - and they stayed a long time! Still working on that trigger. I'll get there some day.
Anyway, I ran into someone I knew who was telling me awesome Jewish jokes which were hilarious, and that was certainly nice. Then I walked into Whole Foods to wait for Rob to pick me up in an hour and scanned the cafe to see where to sit... and saw someone I knew from Margie's meetup group who had only come once. She called out to me and I went over to sit with her.
Thus started a 90 minute wonderful, intense, fulfilling, one of the most meaningful conversations I've had in ages. I didn't even want to retrieve my grocery cart from where I left it when I saw her for fear of breaking the spell of the conversation. We are both very open people and sensed that in each other so were able to have a deep conversation about health related issues and talk about social interaction issues we shared. This is someone I had only met once (and ran into for a minute or 2 a couple other times a long time ago). I love, love, love being able to do that.
So, the lesson is, besides how wonderful the conversation is, that sometimes you get exactly what you need when you least expect it.... you just have to find the strength to be patient, go about your life and open yourself up to opportunities.
I find it ironic that I left the gelato shop being jealous of the conversations the people in there were having, thinking "Well, I can have good conversations too but .... with who???" (Who in that moment, I meant, but aside from my few friends like Nate and Rob that is often a question) and then not 10 minutes later the answer is literally dropped into my lap in the form of a 90 minute deep conversation with someone I'd only meant once. Thank you, whatever spiritual being that exists!
A similar thing happened last week/2 weeks ago when I was leaving the public market and thinking to myself "Gee, I really wish I had something to do tonight, I don't feel like going home and doing nothing.. I wish I could stay out longer and do something..." and then I swear, not two minutes later I descended the stairs of the public market, walked outside and these guys I knew who juggled around Portland saw me and said to me "Hey, Kate! You should come to our open mic night tonight at the CTV building!" And I'm standing there in shock, thinking "....Someone just invited me to a social event that I not only like but am physically able to go to. Has that EVER happened before?" And it was amazing.
If we want to stretch the concept further.... it took a a LOT LONGER TO GET than I would have liked, but finally when I was about at my breaking point in terms of having nothing to do and nowhere to put my energies and focus, the Maine Jewish museum came to me and in the 2 weeks I have been involved with that, I have really derived a lot of satisfaction, self worth, contentment, connection and energy from it... and hope to continue to do so.
I also recall how worried I was about the winter... and the lack of heat... until thank God we got that really bad cold spell very early in the winter which showed me that yes I could handle it... and I've had no problems since... most of the winter weather has actually been very enjoyable, with the crisp air and blue skies that I love so much... who would have known.
So I'm thinking by writing all these examples down, I can convince myself to trust in the universe.... not a God, I don't do God, but trust in the universe I suppose... trust that when I *really* need something, it will appear for me... no matter how much I think it won't, no matter how much I think there's no way. Trust that I will find the resources to handle what I need to handle . Margie says to put your intentions out to the universe and trust in what you get back. And other things I'm too tired to remember. That other woman says "you're right where you need to be." I've been thinking of that a lot .
Will this turn into a friendship? I hope so. In college I had a lot of one-time deep connections/deep conversations with people that happened all of a sudden that I could never turn into a friendship, though, so I don't want to get my hopes up.... but I will see where it goes and hope that it does turn into a friendship... I could use a female friend, I love my guy friends, but it would be wonderful to have a female friend.
We may see each other again on Thursday tentatively....
Well I have to go to bed........... short summary of day..... Went into Children's Museum for first time (go me), applied to volunteer, cryptozoology museum too which I did not like at all, looked at apt in east end with a roommate which was better than expected but still don't know about, had to walk back to eastland area for abbreviated therapy appt, which was an extremely long walk, went to gelato place, was tired and grumpy, K gave me free gelato because she said "you deserved it," and I already wrote the rest.
I suppose I can't complain about not having enough to do after doing all that. What a varied and purposeful day!
I love Portland.
May I have hope and patience and belief in my ability to have a good future going forward.
I was inspired to write this post tonight after listening to a song I used to adore in college, Me and Emily by Rachel Proctor. Music for me has always been the most emotional medium possible. I cannot even begin to express the level of emotion that I experience when I listen to music... usually positive emotion, of course, as I listen to music that makes me feel good and that I like, but the opposite can be true, too.
When I was in college, my only source of joy was listening to the Baltimore country stations. Looking back I have often cited this as a weakness, poo pooing my lack of ability to make friends and upset that all I had was the radio. But you know what? Maybe I had more than other people had and didn't even know it. The radio gave me joy. What made me miserable was my feelings of self comparison with others. Had I been able to stop that, I would have seen that living with in your own joy is the way to make your life work. No matter what it is that brings you joy or how your life looks in comparison to others - if it works for you, then it's where you should be.
Going back to tonight....
I was barely paying attention at first. When the the opening notes of Me and Emily by Rachel Proctor came on, however, I was instantly transported to a different land. It's the difference between knowing something intellectually and FEELING it, and oh my, sometimes feeling it can feel good. (In fact, if I could shortcut my brain and access positive feelings more often I'd be very happy. It's only really music that has allowed me to do that.) Anyway, so I was transported to a different land. I saw myself dancing away in the field behind the library at my college, belting this song out at the top of my lungs. I felt myself , back then, feeling the joy, the emotion, the CONNECTION as it filled up my whole body, my mind, my heart, my soul and spirit and I became one with it. I remembered what it felt like to quiver with ecstacy, to let the music take control of my body, and to dance as if nothing else in the world existed (and believe me, for me, at that time, it didn't).
I saw myself at that utility pole in the middle of campus where I used to get the best reception to all my stations, listening to Skin by Rascal Flatts with both an enormous smile on my face and sigh of wistfulness, wishing I could have what the last line in the song so eloquently delivered... "And for a moment, she wasn't....scaaaaared." I remember the exquisite joy of thinking how this wasn't even supposed to be released as a single, but it was so good stations all across the country were playing it anyway.
And that's just with two songs....
But most of all, what I felt when I listened to these two songs tonight was a sudden realization. I DID experience happiness in college. I DID experience joy. I HAVE felt what it feels like to be utterly and wonderfully alive. And it may not look like anyone else's version of being happy.... it may not look anything like anyone else's life....but it is happiness, nevertheless. Happiness cannot be measured, defined or perceived in relation to what everyone else is doing. It is a common mistake we make because from the time we are small, we are acculturated to behave a certain way, think a certain way, and have certain values. We are taught by mass culture the "proper" way to have a life. For most people, their lives will differ from these ideals but maybe in smaller ways. For those of us with disabilities or radically different brains.... Our happiness, our functionality, is going to look radically different. And we might spend the rest of our lives trying to come to terms with this.... We might spend the rest of our lives trying to accept ourselves in the context we have been raised in.
But really, if listening to Me and Emily by Rachel Proctor can make you THAT happy, why would you even bother to try? Why force yourself into a box that is that ill-fitting when you could be so happy if you just accepted that the things that make you happy are not going to be the same as others, and the things that make you upset are not going to be the same as others, either? Why chase an ever changing , fleeting definition of "normalcy" all your life when real happiness is so easily attainable?
True, there may be some compromising, in as far as you want to be able to connect with or integrate with the world around you. But there might not have to be as much as you think. Joy begets joy, if you are truly in the place where you were meant to be.
I only hope that I can remember this and find a way to live it - instead of merely writing about it as it occurs to me. Time...
http://www.youtube.com/watch?v=pKU5wkATl9w Video of song
The most wonderful feeling today. And as usual, like usually happens in life I am finding, it was completely unexpected. Maybe a result of intentions being put out to the universe? I don't know, but all I can say is it was about time! I was going out of the public market on my way to the gelato place, and I ran into the juggling guys - this group of people that are so nice and friendly who wander around Portland juggling! I just love them, this is the third time I've met them. The one guy said "It's good to see you again" and we chatted for a few minutes, me trying as hard as I could to keep my tone and body language casual.
Then the guy who I particularly like, whose name I don't know, said to me "You should come to our Open Mic tonight at the Community Television Building!" The words hit me like a ton of bricks, but a GOOD ton of bricks. My eyebrows when up and I stared at him for a second. He started to explain where it was. I said, "No, I know where it is and I like that place, I'm just processing." Then I asked him some questions about it and told him I'd try to go if I could figure a ride back afterwards.
And I walked to the gelato place in a happy daze. Let me explain. That is the first time in .... well I could say seven years but I'd be lying, because even before I developed chemical sensitivities that kind of thing didn't happen to me. I didn't have the social connections. Oh, I suppose there could have been an isolated time or two in college, but even then I think it was me planning things to do with my 1 or 2 friends, who didn't have much of a preference either way. Has that ever happened? I don't know. But it was delicious, just delicious.
Because, you see, it's not like I haven't been invited to places in the past seven years. Oh, I've been lucky enough to make friends, to make a few casual acquaintances here and there over the years as well, and they would invite me places from time to time. But, enter MCS, they were never places I could go. I have resigned myself for the last seven years to living a life where my only social opportunities were Whole Foods, gelato place, public market or online. And the occasional venturing out somewhere else that I *made* myself do but never really enjoyed, just gritting my teeth all the way through.
So, when he said this, two, no three, thoughts hit me simulatenously. One, and first and foremost, "OH MY GOD THAT' S ACTUALLY A BUILDING I CAN GO INTO!" Two, oh my God that's actually something I'd like to do. Three, I'm in Portland and that's two blocks from where we're standing. OMG I'M GOING!"
What a great opportunity, I thought to myself, to be with other creative minded people likely my age in a fun environment where creative things happened. Now, since I'm me, I had to slightly ruin it (but not entirely) by going to whole foods first and spending most of the first hour there so that my friend who had agreed to go with me had to, shall we say, push his timeline out a little bit and we had to shorten our visit considerably, which I was apologetic about.
But it was still so sweet. When I walked into the building and had no symptoms - I do not know why I do so well with the CTV building but oh thank God I do and I hope that does not change - and walked right back there like I owned the place (actually, very tentatively, but doing it at all, oh my, it FELT like I owned the place) and sat down there, in a crowd of about maybe ten (not a high attendance but oh well) and felt the energy, the beautiful creative, relaxed, happy hippie type energy in the room.... I was happy. I was so happy. I was relaxed (except for obsessing a little about how long I'd get to stay) and I was happy.
It didn't matter that the comic acts on the stage weren't all that funny. They were okay and they had a great spirit to them. The audience had a great spirit to them. The person singing when I walked in was doing an incredibly botched version of a Lonestar song - I'm Already There - but I was just happy that A) It was a song I knew and B) It wasn't too loud. All the acts after were comedy, so I am curious to know what the other musical acts sounded like, but I suppose I will have to wait to next week for that.
We had to leave after about 30-40 minutes because we had gotten there late, and I wanted to stay of course but I knew we couldn't.... But thinking about it now, I am just so thankful it happened. It might have been a small slice, but it was a slice of normalcy of the kind I hadn't experienced in seven years or longer. I am thankful and I want more. I will be there next Thursday. I was even going to speak had I stayed longer... I was composing a poem as I sat in my seat! That's how bad I wanted to get back into the world. Next time =)
Now I only ask of myself three things for going forward. For the last two days I have done pretty well at remembering the "Right where I need to be" statement gleaned from Margie's, and also the "I laugh in the face of my gremlins." I ask myself that I remember those two things and put things into perspective as much as I am able to. I ask myself to have patience and remember that as much as I want everything right now, it will take time, but it will come, and to never lose sight of what I have and to appreciate what I have. Not to lose sight of that in the pursuit of something more. And to feed myself. If I do those things I think I have a good chance of getting the kind of life I desire.
"If you can concieve it, and you can believe it, you can achieve it."
I need to start looking at room ads and believe there is something better out there for me. I like Rob, of course, but need independence and need to believe I can have it. It's all what you believe in and what you tell yourself, much as I hate to admit it.
I want to have a life where I can determine my schedule and easily walk places. Now that I have a taste of, an inkling of, places I might be able to actually go - it's intoxicating. I want to believe that I can have a life where I might go somewhere to volunteer during the day, and some social events to partake in during the evening. I want to envision being able to cook for myself, as I am doing, and to take care of myself. I want to envision independence, I want to envision being part of the community. If I am patient, maybe it will come true.
Free-associated thoughts in response to a comment I just got. Someone just said "thanks for being approachable." I thought to myself, is that it? Is that all I have to do? People can see it as such a gift for me to just be myself? Then I thought of all the people I know are not approachable and I thought well maybe it is. Maybe it is. I hope so, anyway. I just need to find my people... I am struggling to love myself. So many people are telling me all of my good qualities and that I need to love myself more. And I appreciate it more than they will ever know. But are they any match for memories like this one? I need help re-framing these moments into a self-concept in which I *can* be loveable.
It reminds me of a time in college, a bad memory which I am glad I now have an antidote for. It was one of my worst memories from college. It was after a sociology class, where we had been talking about relationships or some related topic. I had already been feeling shaky when I went in, and always struggled with self-esteem being surrounded by so many people my age who I saw as better than me while living on campus. I began to get agitated by the intense feelings of self comparison that were coming at my fast and furious while she was talking.... I lost my composure which I usually could hold while in class (but not after class) and started crying... Harder... and Harder... while everyone ignored me. I have to tell you, being ignored when you are crying is perhaps the most difficult, most painful feeling I have ever experienced in my entire life. I shudder just thinking of it, but unfortunately I had *plenty* of time to learn it in the first two decades or so of my life.
Class ended, and the teacher stood there looking at me uncomfortably, not saying anything, or not saying much anyway. I don't think she was cut out for these situations. At my breaking point, I sobbed to her an agitated, tortured "Am I THAT untouchable??" or something of the kind. I felt as isolated and separated as a person can feel. It's painful just remembering it. She left, and if I remember right I proceeded to collapse on the hallway floor convulsing and sobbing (usually I managed to at least find a bench or couch in the hallways to have my post-class breakdowns, but not this time.) I remember my fingers and hands were tingling, maybe lack of oxygen because I was crying so hard. I was spent. It was an evening class and the building was empty. I do not know how long I would have stayed there had not a girl I knew only vaguely happened upon and asked me what was wrong, after quite a bit of time had passed . That was all I needed. Someone to care. Someone to care! Someone to feel connected to. That's all I ever wanted . I was able to pick myself up and be okay after that.
That's just a slightly more (but not much) intense version of what most of my days in college were like. Meltdowns, profound lack of connection, isolation, loneliness, and then, brief moments of human connection to put me back together again. Is it any wonder why I avoid most people my age like the plague? I've never learned to feel secure about myself around them. I do not know how to go about starting.
But I'm told I'm approachable. Well, at least someone likes me.
How am I ever going to do a presentation on Asperger's that is honest and true to my life when all of these memories make me cry....If I could find a way to heal them maybe I would start to love myself and I wouldn't have to try so hard to quash them down when I interacted with the world.
I go to a self-improvement style meetup one town over near where I grew up (so it has nostalgic value too) every two weeks, and have for the past year and a half. It's a very nice group of people and I feel very fondly towards the facilitator. At the meetup tonight, one thing we talked about was "I'm right where I need to be," and I tried to imagine a way of living where I could be okay with existing in whatever physical or mental state I was in... And find a reason behind it, know that even though it just seems like it's mindless unnecessary suffering, that actually, there's a reason behind it.
If I look back at my life over the last 10 years or so, I can see times where I thought I was just mindlessly suffering, but those times ended up being a great source of inspiration and growth when looked upon with the viewpoint of a few years. In fact, I've said this before, but had I never had to move around the country for several years to survive, I wouldn't be anywhere near the (mostly) well-rounded, intelligent person I am now - I wouldn't have PERSPECTIVE, and perspective is what I have always desired more than anything. I wouldn't have a sense of the world around me. I wouldn't have a sense that people can live in so many different ways and that's okay. I wouldn't have any self-esteem or confidence.
So, I ask myself, what am I preparing myself to do or be now, during this time of partial suffering and partial growth? What will I see when I look back on it in a few years that I can't see now because I'm too close to it? How will I grow? Maybe I am "right where I need to be." Maybe there is a reason. Maybe it is okay to simply exist sometimes and not have to constantly be worrying about matching my life up to an idea in my head. In fact, if there is one theme in the meeting tonight, it was that life should not be lived trying to match it up to an idea in your head. It should be lived as it is.
One guy at the meeting had had six or seven different careers - from doctor to stock market to flight attendant to psychotherapist. He's nearly 70 with a great sense of energy. He just went where life took him. One girl was talking about how the ocean brings things to us and takes things back, both good and bad - trash and a beautiful shell in the same wave, and we need to accept it all. She said she learned acceptance from the ocean.
In this book I'm reading (The Journal of Best Practices by David Finch, my second time reading it) he talks about how his wife tried to teach him how to go with the flow. He said "But you won't accomplish anything that way. " She said , "But life throws punches and if you don't go with the flow, you will be knocked down, and then you definitely won't accomplish anything."
All good food for thought in a very inspiring meeting with 14 people - 6 men and 6 women, no wait, one guy came late, so it must have been 7 men which means it's the first time in history there were more guys than women! - and a very nice exchange of ideas. And now I want to listen to some Gary Allan And hope I can keep these ideas in my head for longer than the time it takes to type them up! Also, today I went to the Jewish History museum. It was beautiful. They said I can volunteer there to do some research and also do a presentation on autism, so I am excited about that!
""At the end of the day, did I laugh and dance enough
Did I tell my friends, how much they really mean to me
At the end of the day, did I really push myself
Or was I too afraid to give my heart away, at the end of the day
I wanna learn, I wanna love
Take some big chance and just trust in my instincts
And my intuition, if I win or if I lose
Any road that I choose, I will drive all the way
I wanna know, tonight as I fall fast asleep
I am one day closer to who I wanna be"
The other night, I was reading some old blogs of mine. I was a little jealous, I have to say. I was jealous of my exuberance, my ability to find joy in even the smallest things and write so well about them. I am not saying I have lost that entirely, but it seems to have been impacted a little, shall we say.
But today, I started to re-realize that I still have it within me, it's just hard to access at times. But after a week or so of being mostly indoors or the local area because of the snow, cold weather and holiday, I went to Portland again today. I was quite tired and grumpy when I got there about 1230. I was dropped off at Whole Foods. I didn't feel like shopping. It was only 8 degrees out, but that was better than -4. I decided I'd walk up to the gelato place. Which is quite a walk from Whole Foods. I do not usually walk from WF, I walk to it. Pearl St is easy to walk down but murder to walk up! Especially with the snow - it's quite steep. But I did it anyway. I wanted that frozen code - 20% off, because you get one percent off for every degree below zero. And I wanted some gelato wake me up.
It took 25 minutes, but I did it. One of my favorite people was working there, Kristina. We chatted, and I smiled, and I was happy enough. Then I tasted that dark chocolate noir sorbetto after a week of not having it... Oh, heaven in your mouth. The burst of chocolate, thick fudgy intense dark chocolate! It's like nothing else. And the strawberry balsamic was like heaven today. The strawberry pieces were pureed more coursely than usual, so you got little bits of strawberry pieces and every bite was a sweet delicacy. Then the mango? Ohhh, the smooth, perfect combination between tart and sweet, melt in your mouth mango. They were all so beautiful. I finished all of the strawberry and most of the other two. I got 20% off, as the temperature was 12 upon arriving, which was about a dollar. I was filled with joy for the place, the people. I smiled broadly at each arriving person. Kristina told me I was only the second person to come that day, as it had been cold and they had opened only two hours earlier. I considered it an honor. I told each new person who arrived that they could get 14% off! (Now it was 18 degrees). I stayed there for an hour and then walked back, this time full of energy.
When I got back to Whole Foods, I was in such a good mood. Gelato usually does that. Everything just seemed wonderful. Whole Foods makes me happy. I didn't have the anxiety about shopping I usually do. I laughed and sang and hummed and danced as I got my apples, bananas, fish and hummus. I laughed and danced through most of the store, until I got really tired. And I got some good food.
It was Nate's birthday, so Rob, Nate, Judy and I had a celebration with him. I gave him the presents I had gotten him at the bookstore last night - the calendars, Big Bang Theory bobblehead and knick knacks. Rob got him a tea set. We played Crappy Birthday for two hours, which was absolutely hilarious. And we connected. I showed him a paragraph in a book I found last night that I thought sounded like me, and he agreed. I found this Icelandic yogurt that while it tastes terrible seemed to fill me up more than most things, which was good. And I smiled.
I pushed myself past my anxiety. Both last night at the bookstore, the day before at Clayton's, and today at the beginnng of the day. I asked myself, what is really important here? It's not how I feel .How I feel is just a means to an end, a seemingly important but really insignificant factor in trying to get to a goal. And what is my goal? HUMAN CONNECTION AND INTERACTION. That is my goal. That is what I need to measure my days by. Not how I feel, if I can help it. I can't completely stop that from being important to me but I can try as much as I can to practice not assigning it as much importance. I can try as much as I can to keep myself in motion towards some kind of goal. That will make me sleep better, that will give me a feeling of being content, that will chase away the depression, anxiety and despair far more than trying to protect myself to the "nth" degree and worrying to death about every little symptom. I don't know if I can keep it up , but I did it today. And what was the result? I laughed and I sang. I danced. I let my friends know how much they really meant to me.
And tonight as I fall fast asleep, I will know, as Kellie Coffey sings, that I am one more step, however small, closer to being who I want to be.
Man, I want to keep doing this . It feels good to try to get closer to who you want to be. Eye on the goal. The problem was I didn't have a goal, I couldn't come up with a goal that seemed feasible. But I'm starting to see. It won't be easy. But if every day I can do one thing that makes me a little uncomfortable if it makes me closer to my goal, perhaps my thoughts will not be on how scared I am of my life but on how rewarding it felt to try and probably succeed at something new. Yes, there will be anxiety about symptoms, but it likely won't be as bad as the anxiety and despair over doing nothing! That is what I have to learn. I have my work cut out for me.
I am continuing to try a course of an ADD med , although I am still not at a high dosage and should try that soon, as I think it helps me focus and keeps the anxiety thoughts that distract me more in the background.
The last few times we've played games, I have been unable to focus or attend, just going through the motions, fighting back tears, really. But today I was engaged and attentive, I was laughing, I was connected, I was smiling, I was really present. Man, did it feel good! And I was so happy to give Nate a truly good day when so many of them with me end up being rather challenging. I also thank the God I don't believe in for Whole Foods... I almost always feel good in there. And I love the people who work there!
Another quote that has helped me is this quote I saw on a calendar last night
"I have loved the stars too fondly to be fearful of the night."
I think that says it all and helps me conceptualize it in a way I hadn't before.
Remember what really matters. A goal, and connection to others. The intense negative emotions that come in between? The physical sensations that are so unpleasant? The anxiety about functioning and the future? They're just what fills in between the stars. The stars are there, if you look. I have loved the stars too fondly to be fearful of the night. There are gaps in between good and in between calm. But I must remember, they are only gaps. They are not the end.
Calmness, patience, stillness and determination will win the day.
And a really good dish of strawberry balsamic gelato.
I also ran into Bobby who manages the gelato place at whole foods and had a nice chat with him, and my former roommate in South Portland who I hadn't seen since I left. He has such a kind face. He has kind eyes. What happened at the end was not indicative of the kind of person he was.
Now I have to go do some more of taking charge of my life before I can relax before bed.
If you like this, please be sure to visit my other website, Accepting Asperger's. A lot of my older writing is stored here, including an editorial I once wrote for the Baltimore Sun. Click here to see it: Accepting Asperger's.
What's it really like to be a 20 something with Asperger's? On this blog, I hope to explore that question. But this blog is not just limited to an audience of people in their 20s - this is for anyone who ever wanted to know anything about autism. I plan to delve into the nature and experience of autism, and examine it from as many angles as possible. I would like to start a conversation between people with Asperger's or autism, parents of kids with autism spectrum disorders, and anyone who just wants to know more. Let's explore what autism means, together.
My goal is to start a discussion on and build a community of people affected by autism - parents and adults with ASD - so feel free to leave your two cents in the comments section of any post. If you're too shy for that, however, or want to speak to me personally, you may feel free to email me at KGoldfie@gmail.com.
Asperger's Book for Sale
Common Scents: Adventures with Autism and Chemical Sensitivity" is the story of a young woman's search for physical and emotional safety as she journeys through the mountains of the Cascades, small coastal towns on the Oregon coast, and out-of the-way towns in upstate New York. Along the way, she experiences things she would never have dreamed possible had she stayed in her Maine hometown, and begins to learn the power of human connection.
Common Scents is the story of the last three years of my life. It gives a gripping view of what it is like to experience the world as someone on the autistic spectrum, and some would say, is an entertaining travel story as well. Because of chemical sensitivities, I engaged on a three year journey for a place I could call home.
Comments from readers:
"The Asperger's element is remarkable. I feel that I understand my son better, so much better. I laughed at this part.... because I've stared at my son in the same way for the same thing." - mother of an Asperger's kid
"Your writing style is SO engaging and interesting. It brings me right into the subject and I always experience a little emotional punch towards the end. In other words, this is the third time I've teared-up reading your work. Kate, you've highlighted ALL the problems with how social skills are usually taught." - mother of ASD kid
"I stayed up entirely too late reading the first 14 pages. I can relate to so much of what you write. I really think you are expressing the true experience with MCS and autism in words that convey the experience." person with chemical sensitivity (MCS)
"Absolutely interesting, insightful and witty. You've blended together your three themes beautifully (Asperger's, MCS and travelling). It seems seamless."