Thursday, May 26, 2016

Lessons in Leaving

Lessons in Leaving... title comes from song that Kenny Rogers' duet partner sang at concert, a Jo Dee cover.

Talking about brain retraining: I am trying to retrain my brain to see pain not as a source to panic about, but as a temporary and necessary part of being in the world that will get better given some time and patience. Man, that's hard!

The good from today: Well, first I was in the Western Prom and it was too hot and muggy. I went downtown and got there earlier than usual and was pretty anxious for an hour or so. Then I met my friend C, who saved me with her conversation and the ability to connect to someone, and then met with my therapist. And Amber, briefly.

Kenny Rogers was going to be on the maine state pier/ferry terminal and I didn't know if I had enough energy to go. I don't even like Kenny Rogers *that* much, but he is country. And outside, a 15 minute walk away, and free.Sooo, hard to pass that up given that the weather was quite decent at 7pm when it was time to go. Mid 60s, felt warm enough but less muggy.

Sooo, I was nervous about if I would be able to enjoy it or even have the energy to walk there, but I did. Concert started at 6 with opening acts, so I timed it to get there at around 730 because person on the phone who I called at Waterfront Concerts told me 7 to 730. Market closes at 7, so took my time getting there, got there at 7, and was told he was in his second song. Perfect!

It felt good to be doing something out of my routine and to have a purpose. I wasn't sure where I was going to sit, but I knew there was a bench right outside the ticketed area I had sat in last year. Found it, some people sitting there but was able to share with them. Got into some mild conversation about country with the guy next to me. He was a Kenny Chesney fan. Had an adorable blonded haired maybe three yr old daughter. There were maybe 20-30 people standing and hanging out behind ticketed area. One older couple dancing, looking totally in love, was so cute. People looked happy to see him.

The sound quality wasn't very good, and neither was the choice of songs. But it was still cool to hear him. His farewell tour. The songs he did that I know were: What Condition your condition is in - with the First Edition, which is a song the oldies station used to play.
Surprising. Very early in show. The song about "She believes in me..." I don't know many Kenny Rogers. There was a woman with him, forget her name. She did Jo Dee Messina's Lessons in Leaving, and THAT made me excited. Not a very good job of it, but exciting to hear a song I knew. Maybe 4 songs I knew.

I stayed for about 45-50 minutes, alternating between standing and sitting. Bench was not great for my back but not as bad as it could have been.

As I was leaving, I saw a guy sitting on the wall by the entrance to the ferry terminal with a sign asking for money. I was following other people hoping to beat my post-event anxiety but when I saw his sign, I didn't want to miss the opportunity for a good conversation. People who are .... disenfranchised often are also much more open, have big hearts and are very engaging to have conversations with. I actually walked back a block or two to give him a dollar, then got into a half hour conversation with him about country music, music in general, life, and the importance of being yourself. Very nice energy about him. We could just barely hear Kenny from there, but when The Gambler came on, his face just lit up and it was so nice to see. His dad used to listen to Kenny Rogers, and it had been his favorite song. He lost his apartment due to high rents, and his job when they found out he was homeless. He's moving to the South for lower cost of living and more jobs there. I just like open people willing to share their stories with me. It made me happy, and made him happy as well. The human connection was obviously worth more than the dollar, but the dollar was the key that opened it up. If only "normal" people were as easy to engage in meaningful, fulfilling, honest conversation as the panhandlers that so much of society denigrates. Not all of them, of course, but I seem to have a good sense of which ones will be. That's the second panhandler I've had a heart to heart conversation with this week!

He used to volunteer in an organization that gave out supplies to homeless people, but now finds himself on the other side unexpectedly. Sad.

The walk back, which I had been fearing so much, actually went fast. Places where I normally would have to take breaks I didn't have to this time. It took only 15 minutes or so to get from ferry terminal to Monument Sq and I didn't even feel exhausted after. I must have been happy because of him. Or else I was aware of my tiredness but not panicking over it, I dunno. I felt somewhat invigorated, like I accomplished something. Walking through the Old Port at night is invigorating also - the nightlife is just.... It's like a different world. I seldom am in the old port at night. All the people spilling out of everywhere, the people outside every resteraunt, it's... there's a sense of joy that pervades.

I timed the bus well and got back to Mon. Sq. around 9:15 for the 920 bus. Saw Mysti briefly. Got on bus. Saw a girl I've met before who works at the candy shop in town and had a very enthusiastic conversation with her the whole way back. We both were out later than usual. Just about the candy shop, being in the old port at night, fancy resteraunts that my dad likes, just a sharing of energy that felt very genuine. I felt in my element and happy to be sharing with her. I felt happy to have gone out of my comfort zone and done something different, and accomplished somehow. To be independent, to have achieved something fun on my own power, without having to beg anyone for help in any way. That was probably it.

So that's hopefully worth the fact that my back hurts more now, but hey it was already hurting somewhat before and a girl has to try to find a way to have fun in her life.

I know that soon after I write this I will likely dip back into anxiety or likely even the despair I had this morning and most of the afternoon, so I am enunciating every detail so that I can remember, joy is possible, even on humid, warm days when your apt feels like a dungeon and outside feels 10 times worse, even when you think there's nothing left in life that could possibly make it worth living, joy is possible. But it always comes where you least expect it.

I thought I'd be so tired I'd need to (try) to take a cab back, but it ended up being the best part, somehow.

The energy put out needs to be countered by benefits somehow.... Can't be all sensory/physical overload .....but if there are enough benefits to counter the risks and sensory.... then good can come. What a delicate balance that is!

Have to overcome my aversion to pain, sensory stuff, etc, in order to have some sort of life and not be panicking all the time. One day at a time.

So THAT was my day. Having a problem with apt, that I can't begin to solve yet, but trying just not to panic and remember life is still possible. One day at a time. I don't know the answer but I am trying to remember not to panic, and I will find my way. Now to eat, watch TV, hope the heating pad helps my back, hope I can sleep, and then do tomorrow. Goodnight all (soon)!

Saturday, May 21, 2016

Fun with 60s Music Street Musicians

Wednesday, May 14-15-16ish, 2016
I was sitting at Mark's hot dog stand, having a conversation. I was about to leave when I decided to check on the guitar player across the street to make sure I wasn't missing anything. I do love live street music, and I'm not really picky about what it is, I just love the vibe of it. But, that said, I do have a special place in my heart reserved for music I actually know and like. That's a rare find. So I cross the street and I'm like, "Hey, I know this song. What is it? I couldn't place it at first, then after 2 or 3 lines I'm like Neil Diamond! and I start singing along to Solitary Man. Totally exciting. The guy was super nice and had a great personality, too. I told him how much I loved Neil Diamond, and he was like "Do you like Shiloh?" which happens to be one of my favorite 60s songs of all time. Oh, man, that was fun! I closed my eyes, let the emotion of the song surround me, and sang my heart out. He had a great smile on his face while he sang, clearly enjoying sharing the song with me.
I was late to meet a friend, but I called and let her know and decided I could stay for one or two more songs. I wished I had gotten there earlier! But I am glad I checked to see what it was. Now, of all songs in the entire world or even 60s universe he could have done, the next one surprised me and delighted me, x100.
"Oh, I could hide 'neath the wings
Of the bluebird as she sings.
The six o'clock alarm would never ring..."
It was the opening of Daydream Believer, which used to be like my #2 favorite song of the entire 60s. Monkees. Ohhh, fun, fun, fun, I've never heard that song sung live before. I had to go, but he said he'd do Simon and Garfunkel next, and I couldn't resist. Sounds of Silence. I was too tired to sing more, but I could have, and oh, wow, I would have loved to stay for like a whole half hour or hour. What a delight. I said "How do you know all my favorite songs?" He said "You're my biggest fan, everyone else has just walked by and not paid any attention. We made each other happy then! He wanted to take a selfie and I said Cool, and we had Mark take it so it came out good. Mark even offered him a free beverage cus he sounded so good and played a private concert right by the hot dog stand for us. smile emoticon He has a mailing list, so I might even get to see him again!
It is quite rare to even find a random street musician singing the Beatles, but to find one singing random awesome 60s songs that I have never even heard live before, *that* is a treat. I'll listen to most street musicians for at least a few minutes, but this was something else.
Then I went to the market to see Shirley, who gave me some useful advice and a lot of emotional support, encouragement and validation about trying to get services. She made me feel heard. I was late and trying to fit in a lot to the conversation so tiny bit overwhelmed, but in retrospect, that is what she did. I have only met her a few times before, but I am lucky to know someone like her. She knows the system because of her son, and she can help give me guidance about what I should do.
Then Ryan and Amber in the mkt, and came home.
Before then, Kathy, the friend of the lady who usually has the dog, in the western prom, some nice sun there. An accopello (sp?) female singing group in Monument Sq. This guy Wayne who said he knew me from somewhere. Turns out I went to see a room he had for rent 3 yrs ago and he remembered me from there. Said he was sorry the room didn't work for me cus he thought I would have made a great roommate!
So considering how bad I felt when I got up, and how depressed, anxious and hopeless I usually feel every day, and how little structure I had today, I made a good day out of my time today. I can be proud of that. The sun sure helped, but trying to reach out to people around me is what makes me feel safe, calm, and connected, for at least a few hours a day. Makes up for yesterday I suppose when I had very few connections.
You never know when you're going to find something that makes your world feel all right again. You may just turn the corner and find a 60s music singer.

Saturday, May 21, 2016
Post from FB, Second time of seeing 60s singer - John Kyle is his name. 

Ok. Before I get too tired. 60s singer.
He is so cool with the obscure 60s songs. Of all the Peter, Paul and Mary songs he could possibly have done.... He chose a little known song called "Day is Done" that I used to LOVE but hadn't heard in so many years that it took me half the song to remember the name of it. I love that feeling of familiarity, the excitement of anticipation, the sudden burst of realization when you figure out what it is.
Oh wow, I totally forgot just how amazing that song is.
Seriously. Amazing. PPM have a lot of great songs but he overlooked all the obvious ones and went for the true gem.
No wonder I'm so tired, lol. These were some quality songs.
Then he did by request Puff the Magic Dragon and some of Leaving on a Jet Plane, also Marvelous Toy! He did Troggs Love is All Around, Sound of Silence, I can't really remember the rest even though I wrote them down. 7 or 8 songs. Nate came by, and requested an Eagles song, which he did a few lines of .Nate liked it and tipped him.
Then there was American Pie... my request also... he did everything by request.... so anyway he only knew the first couple verses.... but I have had this middle verse of American Pie memorized since I was a kid...Never thought that'd come in handy... But he played the music on the guitar and I sang and I felt so powerful.... I was creating music where that had been none before.... I have never gotten to sing solo to .... music before. Like karoke I guess. I put so much passion into that verse. I felt confident. It felt good! We were trading lines of the song, trying to remember the lyrics. It felt good.
I just looked it up, I got the lyrics right! For some reason, these few verses have been stuck in my head for years. They're just so emotional, I love that.
"Did you write the book of love
And do you have faith in God above
If the Bible tells you so?
Do you believe in rock and roll?
Can music save your mortal soul?
And can you teach me how to dance real slow?
Well, I know that you're in love with him
'Cause I saw you dancin' in the gym
You both kicked off your shoes
Man, I dig those rhythm and blues
I was a lonely teenage broncin' buck
With a pink carnation and a pickup truck
But I knew I was out of luck
The day the music died
I started singin'
Bye, bye Miss American Pie
Drove my Chevy to the levee but the levee was dry
And them good ole boys were drinking whiskey and rye
Singin' this'll be the day that I die
This'll be the day that I die"
This song has a lot of verses, lol
Then he actually knew some country, not to sing so much but was familiar with and liked, and did attempt a few verses of Whiskey Lullaby. Also he turns out to have been a computer programmer from LA, which Rob might be interested to hear! Spent like an hour there. Didn't know he'd be there. Got there at 3:45, left around 4:45. Knees are a little sore from trying to dance but hey it was fun. Then hung out with Nate at the market a bit.

Monday, May 16, 2016



The gasp of delight. The utter and total disbelief that something so amazing could be happening. The smile that flashed on my face no matter how bad I felt only minutes before. The song that eminates from my throat. Me on 60s radio, lol. I couldn't hear the radio well in the market today, and when the next song came on I thought it sounded like the beginning of Edwin Starr's "War" so I didn't get up to investigate. But then I wasn't sure, so I got up to see, and what I heard was like being thrown into a bath of warm water. Safety. A song I hadn't thought about in ages, but used to love. I gasped and literally spasm-ed in delight. Since there were too many people too close to sing, I just closed my eyes, tapped my fingers and swayed my body to the rythm of the song, and for three minutes, I felt the energy of the song course through me, not the energy of my anxiety. For three minutes, I lost track of everything around me. I was distantly aware of people talking and ordering food on either side of me, but they were in another world. I made sure I wasn't in anyone's way, and then I closed my eyes and let go.
"Sweeeet cheeeeeeerrrry wiiine, Sooooo veeeeeerrry fine..."
With all the hyper-focusing my brain so often does on unpleasant stimuli, with the nearly constant overwhelm I get with negative stuff, I am so thankful I have the ability to hyperfocus on POSITIVE stuff occasionally. And this is why I am so passionate about 60s music radio.
Having never drank before or partaken in the drug culture, I often wonder if my 60s music high is similar to that, but I think it's a lot safer. smile emoticon
I should add that this doesn't happen with every song, just the ones that really surprise me and are awesome. So maybe one song per hour if it's a good station. Which is more than enough. Today, it was this song.
Sweet Cherry Wine, Tommy James and the Shondells, 1969
"Come on, everyone we gotta get together now
Oh, yeah, love's the only thing that matters anyhow
And the beauty of life can only survive
If we love one another
Oh, yeah, yesterday my friends were marchin' out to war
Oh, yeah, listen now, we ain't a marchin' anymore
No we ain't gonna fight, only God has the right
To decide who's to live and die
He gave us sweet cherry wine, so very fine
Drink it right down, pass it all around
So stimulatin', so intoxicatin'
Sweet cherry wine to open your mind
And everybody's gonna feel so fine
Drinking sweet cherry wine, yes they will
Watch the mountain turn to dust and glow away
Oh, Lord, you know there's got to be a better way
And the old masquerade is a no soul parade
Marchin' through the ruins of time
To save us He gave us sweet cherry wine
Sweet cherry wine, so very fine
Drink it right down, pass it all around
So stimulatin', so intoxicatin'
Sweet cherry wine, everybody's gonna feel so fine
Drinkin' sweet cherry wine, yes they will
Oh, sweet cherry wine, so very fine
Drink it right down, pass it all around
So stimulatin', so intoxicatin'
Sweet cherry wine, come on
Drink it with your brother
Trust in one another, yeah, yeah
He gave us sweet cherry wine
Drink it right down, pass it all around
People, don't you know the cup is runnin' over?
Yeah, yeah, yeah, oh, oh
Come on, come on, yeah
Ooh, ooh, ooh"

Wednesday, April 27, 2016

Asking the Right Question

Asking the Right Question

On my way to my daily walk on the western prom, I ran into a new friend walking back to her apartment. I smiled at her, and chatted briefly before continuing on my way. During my walk, I ran into a woman who usually sits on a bench at the western prom with her dog. I have had many short but enjoyable conversations with her over the last several months. Usually, I talk about the weather for a few minutes and then go on. I don't like to linger talking to someone unless I am sure that is what they want, and I couldn't tell with her. Recently, though, I have been getting vibes that she is okay with me staying longer and sitting with her, so that is what I have been doing. Today, I sat and talked to her for half an hour. Far longer than any other time. We talked about such soul-searching topics as how to fill the void inside you. She says everyone has a void inside of them, but they choose to fill it in different ways. Some with drugs and alcohol. She said that asking "What can I do to fill this?" and acknowledging it exists is the first step. She thinks I will find a way to fill it some day because I am asking the right questions. I like her. She is blunt and intelligent. I find it hard to figure out the boundaries of any social interaction I'm in, so I was still nervous afterwards, but I think I am doing okay.

I went downtown, where I was supposed to meet the rabbi of my synagogue at 4pm to discuss disability awareness. I didn't get downtown until 3:40, which was later than usual. I saw a guy I often talk to sitting in the middle of the square when I got there. We exchanged some quips, and he asked me some questions about Netflix. He told me was 78, which amazes me. He doesn't look a day over 60 to me. He walks all around town, and is still very active. He often gets lunch at Maine Med, near where I walk, then goes downtown to the library or market, so we see each other a lot by chance. We have very little in common other than we both spent a lot of time in Baltimore, but we enjoy each other's company, for a few minutes at a time. I enjoy him and the energy he has around him. We talked for ten minutes and then I said I needed to go get ready for my meeting.

What is it I want out of the world? Out of human interactions? I want a smile on the other person's face. I want to make them laugh. I want to feel that they are enjoying our interaction. I want that positive, fun, genuine energy I get from the people I admire. I want that feeling that I am "plugged in" to something other than myself. Being in interaction with certain people, with really anyone who's being genuine, feels like being plugged into a safe port. With the right person, it doesn't even matter what you're talking about. Just that that feel eminating from them.... that it keeps flowing into you. Sometimes I am not sure how to make it keep flowing and I think I might get too hyper and talk too much, or try too hard to make them laugh. I put so much effort into it I am not sure I can really *feel* the feelings from them that I want to feel. But I simply don't know how to interact with others without thinking or trying to plan it out ,and that often kills the very feeling I am looking for. It's a work in progress.

What do I want out of the world? I want to matter to someone, and I want to be able to tolerate my body. Simple things, with not so simple solutions.

Finding a way to realize, to understand, to have the perspective necessary to see what effect my efforts are having on others - to feel the effect of my love for other people on them, and to feel their feelings in return - that is my goal, but it's not one I've made much progress on, in my opinion.
Interactions often feel one sided to me, and I honestly cannot tell if this is because the other person is not putting much into it , or because I am not able to pick up what they are giving out.

My day continued with my meeting with the rabbi. I appreciated his ideas and committment to the causes we were talking about. I did feel engaged in the conversation. The empty void feeling went away for the hour we were talking. I talked to D at the market afterwards. Just a little chatter to help center myself. I went to sit down and rest, and then saw a guy I had met a few weeks ago at the market come in. He is usually open for conversation, and I can't resist more, so .We talked about John Krakow books, and I made a bunch of jokes that got laughs, which made me feel good. I felt nervous, because my brain was speeding way up trying to think of something to say and figure out if he wanted me to talk to him or not, but I over-rode it because being in connection felt so good. His smile and laugh are centering. I think to myself "What am I doing? I have no idea what to say," but I over-ride it because I get the feeling that it is welcome, even if my brain has other ideas.
We have been to many of the same places, both like country music, and both have an interest in psychology and disabilities. It is the third time I have met him, just randomly.

This is where perspective comes in.  I don't work, and with very few exceptions never have. My heart cries out for the feeling of being part of a bigger mission. Ideally, a valuable part of something larger. I can talk to half a dozen people in one day and still not feel part of something. I wonder if I am mis-intepreting how good or bad my life really is. It is a very painful feeling to feel so adrift. I have analyzed myself for years, and this is not the first time i have come up with this conclusion. But one day, I hope that I will find the perspective that allows me to see myself in another way. To see myself as part of something bigger, even if it's in a far more informal way than many people have. To see myself as making a difference in the world around me. To find a way to understand the influence I have on others. I am so good at acting out the part in my head, that I feel that I should be. But I can't seem to understand cause and effect in a social sense. I do this, I say this, I feel this, and the other person does, feels, or says X in response. The messages are too subtle. I don't know. I don't know why I still feel so adrift when I am awash in social interaction. I do not know how to find a way to find social interaction that feels safe, comfortable, meaningful. Talking 60s music at the hot dog stand gives me these things, and I treasure those moments probably far more than I should. Nothing else does.

One day, I will find the answer. Or live my way into it. I just hope it is someday soon, before I lose all hope. According to my western prom bench buddy, at least I am asking the right question. So I have that going for me.

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