Friday, November 20, 2015

Old post about Jewish museum

Found this in my email and wanted to save it somewhere, so here goes. I was so moved just reading it again, been about 9 months or so since I wrote this I think. I am so moved just remembering what a wonderful person I was lucky enough to be around for that long. I so hope I find other people like her. I need more people like this in my life! This is from January 2014.

A Warm Welcome 

The plate shattered in a thousand different pieces. Those of us who were there stood looking on, horrified, unsure of what to do next. We were standing in a museum, and a volunteer had accidentally dropped a family seder plate owned by the director. The director, whom the plate belonged to, immediately told the volunteer very strongly and powerfully "Don't even worry about it. It's over, it's done with, let's move on!" The woman who broke it said "Oh, I feel so bad!" The director said, "It doesn't matter, I don't want you to feel bad about it. You did good work for me today and I am thankful for that. The object doesn't matter." What struck me was not so much that she came to that conclusion, as most people will come to that conclusion eventually. That it was her very first response, however, seemed unusual. It was instinctual, to take care of the other person's emotions. To know that people were more important than things. This one story, to me, encapsulates the spirit of this woman more than anything else I can think of.  

Buildings are more than just plaster and wood. Buildings have their own spirit and energy, created by the people who inhabit them. For five months from February to August of 2014, I had the opportunity to work with the woman who created the most welcoming environment I have ever experiened at a Portland, Maine museum celebrating Jewish history and culture. “My job,” she would often say, “is first and foremost to make people feel welcome.” I can say with utmost certainty: she succeeded. With the visitors that came to look at the art and history exhibits, and with the volunteers who came to help with the running of the museum and the chance to be a part of something bigger than themselves, her love of what she was doing was always evident.  

My job was to research Jewish summer camps in Maine. For several months, I plugged away researching a long list of them for an eventual exhibit that was planned. My memories, however, center more around what happened while I was doing this than they do on what I learned from my research. What I learned was no less than how to be human. In the process of this project, she taught me an awful lot about having compassion for myself. 

“I can’t focus, and I feel like I’m not getting enough done. I’ve been here two hours and I’ve gotten like two camps done,” I said to her one day. 
“Each time you come, a little more gets done. That’s all that matters to me!” she said, without missing a beat. 

During a conversation that turned to more personal matters, I volunteered something that I had not told anyone else before. Nervous, I said, “What are you thinking? Am I a horrible person?” 
“No! I have compassion for you.” 
“What does that mean?” I said, knowing the dictionary definition, but not how it applied to this situation.
“It means I see your struggle, and I have empathy for you.”
“Ohhh.” With that, a mental shift occurred. My shame and self-doubt flipped around and I began to see how someone could view me as simply a person with problems to solve, instead of a person who was intractably distasteful. There had not been anyone in my life who had taken the time to show me this before. Perhaps they wrongly assumed that I already knew. 

“Why don’t you like hugs?” she asked me one day. I didn’t know. I just knew they felt uncomfortable and wrong. I realized that I was missing out on a lot of affection, though. A few months passed, and I realized that deep hugs were comfortable, and light hugs felt like of like a mosquito biting you - enough to startle you, but not enough to comfort you. With this new knowledge of how to advocate for myself, I started asking for hugs every time I was there. 

Perhaps the best way, however, to express how much she meant to me during these months is not to describe the things that happened, but to tell you what didn’t happen. Conspicuously absent was the fear, the anxiety and the racing thoughts of “doing it wrong” that characterize most of my interactions with other people. This woman is on a very short list of people in my life who can make feel heard. A very short list of people who I felt genuinely valued what I had to say, who wanted to know more. With her, I did not feel like a burden. She hung onto my every word, and her face communicated such acceptance. I didn’t have to pretend or choke on my words. I felt valued. 

Yet another roommate situation exploded in a sea of conflict, and it was time for me to move out again. In despair, knowing I couldn’t live with a roommate and couldn’t live with my parents, I confided in her. A combination of severe anxiety, sensory issues and negative past experiences made me believe that I couldn’t live in an apartment on my own. It was, however, the only remaining option. She believed I could do it, so I started to, if not believe, at least attempt to set in motion some steps to achieve that goal. I was terrified every day, even just looking at apartment ads, let alone taking the steps needed to view and apply for the apartments. But there I was, and there she was, and I had to do something with my time. So I started calling ads, and with the help of a wonderful man I met also connected with the museum, I started looking at the apartments. I arranged funding. I started to imagine that I could do this, or at least that I could take the steps to try. As luck would have it, I was able to find an apartment that worked for me, after seven years of trying to accomplish this. Why was I successful? I feel it was because someone took the time and effort to make me feel safe and supported. It wasn’t in what she said, but in how she said it. It was in the nonverbal messages of “I get you” and “I know how awful it is, but I think you can do it anyway” that kept the racing, paralyzing thoughts of despair away long enough for me to actually change my life.  

The goal of this particular museum was to encourage a love of Jewish life and culture. After spending time here, I started going to a local synagogue and contemplating Jewish research projects I could do. I met so many warm, friendly and intelligent people in the Jewish community, which fostered a real respect in me for the Jewish community. This, my friend created, not just for me but for everyone who walked in that door. But what she did in her capacity of director at the museum went beyond creating love for Judaism. She created self-love for those who needed it, and fostered connections and love for and between everyone who was part of the museum in any way.

I ran into her yesterday at a coffee shop, and when I realized who it was I threw my arms around her and gave her a hug. A smile lit up my face. Reflecting later in the day, I realized it was only time I could ever recall spontaneously hugging someone. Hugging, for me, is usually an act that results from a careful analysis of risks and benefits. This apprehension comes from the sensory sensitivities I often experience.
However, there is one thing that is apparently more powerful than fear, and that is love. No one in my life has exemplified this more than her, and I am thankful for the opportunity to learn this lesson - but a little sad that the time I got to experience it was so short. I took risks for her that I wouldn’t have in any other situation, and was motivated to challenge myself. With her, my heart was full of love, instead of pain. I know that I will never forget what it felt like to want the company of another person more than I wanted to avoid what I was afraid of.   

Monday, August 10, 2015

Tie Dyed Connections

Tie-Dyed Connections

I sing one line, and he sings the next
Reminiscing about an era when I wasn't even born, but know so well
"Think of all the hate there is in Red China," he sings
"Then take a look around to Selma, Alabama," I continue, echoing the anti-war 60s ballad Eve of Destruction
And what about "Stepping Stone," he asks?
"You're trying to make your mark on society, you're using all the tricks you used on me," I sing without hesitation, the verse coming easily to my mind even though it's been years since I even thought of it
And Hair?
"She asked me why, why I'm a hairy guy
It's not for lack of bread, like the Grateful Dead..."
and we laugh at the lyrics I have always loved
"Do you know the rest of the songs from Hair?"
I didn't think I did but get them after 2 lines, the names instantly springing to mind, "Three Dog Night...  Easy to Be Hard," and Acquarius, of course, but let's not forget Oliver's Good Morning Starshine, tripping over each other to give this information, singing out of key and but delightfully so, singing over each other, but making up for glee what we lack in being in tune

It's delicious because it comes so easily, it's delicious because I don't need to think about it, I don't need to analyze it, and I don't need to be afraid of it, of saying the wrong thing or am I right, I just savor the delightful memories on my tongue that I am priveleged to share with someone else who also delights in them. Talking 60s music may be the only time I'm not afraid. What a gift, but how sad as well.

Why can't the whole world communicate in the language of 60s music?
There is no social anxiety, no fear, no weight of the world on me when I am talking 60s song lyrics
There is just that sweet delight that I don't want to ever go away, and that rare connection, reminiscing about an era in which I wasn't even born, with people born many years before me, but who make so much more sense than people in my demographic usually do.

I never thought, that day when I flipped local oldies station 100.9 WYNZ on at age 13, that my passion for 60s music would become the one thing that would sustain me even as an adult. I never thought that those song titles, artists and words would be the good thing, the one not-scary thing that would stick in my brain after a lifetime that has been far harder than it should have been.
"Young Girl, you're much too young for me" and "Have you got cheating on your mind" become the elixir that can bring life back into me, both when I was 13 and still 18 years later at age 31, ten years after most oldies stations have stopped broadcasting oldies. The language of hope, nostalgia, pleasure, the only thing that I have found to compete with the language of pain that so often overtakes me.
Who ever thought I'd sing "You and me and rain on the roof," years after I lost my Loving Spoonful CD.

60s music was the only thing I could take pleasure from when I was an isolated teenager who had no idea how to relate to the world around her, and thank goodness, it remains the same nearly twenty years later. These tie-dyed memories, revived courtesty of the patrons of a hot dog stand in downtown Portland.

Wednesday, February 4, 2015

On Shame

The topic for our Aspie group this month is Shame, so I wrote the following on the topic to share with the group.

Shame and Disability

If you look up the definition of shame in the dictionary, it is defined as  
"A painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior." To me, that is eye opening because it makes so much sense for how I have lived my life. I often pretend to be more confident than I feel, because people seem to respond to me better that way. I have fully adapted the theory of "Fake it to you make it."  But I so often feel a feeling of shame over who I am. Much of this is caused by having a disabillity whose primary description is not understanding the social world in the same way others do. 
For me, shame, at least as an adult, is not something caused by other people directly and overtly as much as it is caused by growing up in a society that de-values people who are different. This happens in a million subtle and indirect ways. It makes you wonder, who gets to define what "wrong or foolish behavior" is? The dominant culture does. The majority group does. As people with Asperger's, our behavior has been declared "wrong" or "foolish" by so-called professionals, and we suffer the consequences. We are self-conscious because we know we are different, we know we are doing things "wrong" but we often don't know what. We feel like we are always doing something wrong. We are always on the alert for someone calling us out on how our behavior needs to change. 
It is not necessarily anyone's fault, that we so often feel this sense of shame 
or self-consciousness about who we are and how we act. It is just the consequence of living in a society where the majority of people think differently than we do. We are sometimes harder on ourselves than the people around us. Sometimes, we internalize the shame and guilt of our childhoods, assuming that because our parents called us out for not acting like everyone else, everyone we meet will think similarly. We police ourselves unnecessarily, measuring every word that comes out against what other people around us are saying. We strive to be just like other people, and this attempt to blend in comes from a sense of shame about who we are - a sense that we're not even always aware that we have. Sometimes, we end up trying too hard to be like others, and find that trying too hard nets results that are equally as dissapointing as not trying at all. 

Some of us have a lot of needs that others don't have. Whether they are sensory needs, conversation needs, help with physical activities or activities of daily living, we feel that we shouldn't need what we do. We internally punish ourselves so much for the help that we require that we never have a chance to bask in the love that others show us. 

When we are embarassed about who we are, we can't feel our sense of connection to others. Shame makes us feel alone and cut off. Feeling shame is not limited to people with Asperger's, but having AS can increase it. 

How do you lessen feelings of shame? You take an inventory of what you like about yourself. You write it down, speak it out loud, talk about it with someone you trust. You surrounded yourself with people like you, that understand you and support you. You speak back to the feelings of shame, as if they were a separate entity from you, and tell them that you are worth something, and that you refuse to give into these feelings. Think of one thing you're good at it and focus on that. Think of a time when you felt confident and loved by others, and play it in your mind again and again. Keep trying to find places in your life where you feel valued and understood by others. Build up a library of these moments, until the moments when you feel good about yourself slowly start to crowd out the moments where you feel ashamed of who you are.

Friday, January 30, 2015

Learning to Take the Long View

Learning to Take the Long View

I once asked my dad, in that way that young adults have of trying to revisit their childhoods and make sense of them, why people didn't seem to care as much about my struggles as I thought they should.

His response was something along the lines of "You have to look at it objectively and see how many times they did care, not the times they didn't. You have to take the gestalt."

I still stubbornly persisted in feeling like no one understood or cared enough about my struggles, even with mounting evidence to the contrary, more often than I would like.

In fact, I accused a lot of people of this. I had trouble reading the nonverbal messages people sent, of caring, concern and compassion. In my mind, it didn't count unless it looked a certain way. I had this image in my head of how caring and compassion would look like. What words would be used, how it would be expressed. Obviously, I was often dissapointed. Sometimes we talk a lot about wanting people to accept us for who we are, but then we don't let other people be themselves. This is a hard lesson to learn.

Then, tonight, I found out a friend who shares a lot of my social challenges had said to our mutual friend that she didn't want to be with me, because I was not compassionate enough to her when she slipped on the ice. Once I got through raging about how unfair and wrong that was, and how much I tried to understand and show compassion for her, I almost laughed. I laughed because I recognized myself in those words. This is a teaching opportunity for me. How can I be mad at someone else for having the same exact problem as I do? I can still be annoyed, but I can't honestly be mad. She taught me, without knowing it, how it feels to be on the receiving end of my accusations. She made me see how nobody can be even close to perfect all the time, and how someone could be feeling perfectly compassionate in their mind but just not be able to show it for a dozen different reasons at the time. I was probably too focused on not slipping on the ice myself to give much of a response! But she didn't know that.

I try to think of what response I could possibly have to her that would help her understand. I try to think of what would help me. People have tried to explain to me the concept of people having other things on their mind and not being able to respond all the time - "Maybe they're thinking about their grocery list, it's not anything to do with you" and that helped a little, but I still didn't quite get it. I think the only thing that could make me get it was to feel how it felt to be on the receiving end of that bias.  "You weren't compassionate to me when I slipped on the ice." My own words coming back to me. Fascinating. We get so attached to our old hurts. Sometimes, when we confront people years later, if they give us what we want... All we can think of is "But why didn't you give it to me when  I really needed it?" and the hole still remains unfilled. We feel unloved, perhaps. But it seems this results from putting people on a pedestal, thinking they can do no wrong. People make mistakes, and a lot of them. But at least they care enough to try to make them. In a recent Parenthood episode, the grandmother tells her adult daughter that marriage is all about forgiveness. That could be applied to all relationships. Perhaps my dad was right, you have to take the objective data and figure out, does this person care? Even if they mess up sometimes and don't show it in the ways I think they should, do they care? This can be hard to remember when you're caught up in emotions revolving around not getting what you want in the moment, but, I am now realizing, doesn't make it any less important.  

Learning to Feel Whole Again

Learning to Feel Whole

I went to a dinner tonight with some people whose company I really enjoyed. I was quite worried about how I would do being inside the house, since given my sensory concerns I have trouble with most environments. I lowered the bar of my expectations to just hoping I could be physically present, and didn't give much of a thought to how the social part would go. This turned out to be what made the evening, in many ways, a success. I felt so much more at ease and part of things than I ever have in a group setting. As I usually do, I contemplated what caused that.    

Just observing and not focusing too much on *making* myself a part of things, but content to observe and finding the place to fit myself in when it was appropriate. Things go so much better when I'm not trying to make them happen. Since I had set the goal just to be able to tolerate being in the house and had no expectations for what would happen socially, I was able to go with the flow. I appreciated what conversation I got, and I did get a fair bit, but I didn't go in with the idea that  " I had to have x amount of conversation with x amount of people or else the night would be a failure." If I had, I would have been too tense and agitated to enjoy it. I found a comfortable chair, and just enjoyed listening to.... what I had wanted for so long, to observe what it felt like to be part of a group conversation. How do groups work? How does the conversation start, how does it end, what does it look like in the middle? There was so much to observe. Unlike the rapid fire tenor of young people's conversation, people took their time to come up with something thoughtful to say. The conversation meandered instead of ping-ponged. I think I am a 60 year old in a 30 year old's body. My thought processes are so much more similar to someone older.

I could talk about the conversations I was a part of or I could talk about the feeling of being part of a group energy, and for once the latter stands out more than the former. Now it seems so clear - but I wonder if I can maintain it. I was so insecure - plagued so much by a feeling of being left behind, and determined to make up for it by brute force -
thinking that if I could only initiate enough conversations I'd feel part of things. I admire my courage and my willingness to take the initiative and try, but in my emphasis on how *I* was doing, and if *I* was being accepted at every minute, I missed something entirely....feeling the energies of other people in the group.

The first few times I went to the synagogue, I was so happy to be in a group setting, I'd just look around me with awe at people's faces. I'd drink in the emotion and feeling of their presence, just in awe of all the different energies that people brought, not being able to get enough of the feeling of a genuine smile. I guess you have to do that, somehow. You have to put aside what you think you want and need, find a still place in your heart and feel the energy around you. This only works if the people around you are good people! But in my case, they usually are. Once you are centered and have a feel for the energy, then you can know where to be a part of it. If you are so inpatient as to ignore the energy and just start talking, you're not going to be able to find the openings. I was too inpatient to realize this before, and I fear for myself wondering if I'll have more places to put this into use. I have to believe I will.

I want to say, that if I'm not so focused on my own need, that I'll be able to feel other people's energy, and that's all that matters. But I know that so much of the time due to the sensory and anxiety issues, my need is all I can feel. Maybe I have to be satisfied with those times when I'm calm enough to be able to feel other people.

To use another analogy from the synagogue, at first I thought I could feel part of the community by rote learning, memorization, studying. If I knew the language, I'd feel part of it. I abandoned that idea quickly because I realized I couldn't do it... but when I stopped trying, I was able to feel the beauty and feeling of the songs without knowing the words.
Social interaction seems to operate along the same lines. When you try too hard, you miss everything. But that, to me, seems better than not trying at all. Either extreme, I suppose, causes you to fail just the same, and moderation is key.

I sat and just listened, enjoying the interchanges and flow of energy back and forth between people. I could be part of it by just observing. I am not sure I've ever felt secure enough to feel that before. I did give a few ancedotes to be part of the conversation, when I was able to, and they went over well.

It was the smile on people's faces, the nonverbal energy and vibes that meant so much more than anything anyone said. For once, I could pick up on it.

Monday, January 12, 2015