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 energy....you 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.
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.
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
"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.
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.
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.
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.
Someone asked me to write about "how we coped with the holidays" for an upcoming Asperger's meeting. I came up with this.
The Problem with Holiday Cheer
Facebook has a new application that allows you to see the highlights of your year. It has the default setting of "It's been a great year. Thanks for being a part of it!" The problem with this cheery greeting is that it fails to take into account that not everyone has had a great year. Computer algorithms cannot take into account human emotions. Many people had a difficult year and don't want to be reminded of it.
It is this constant pressure to be happy that I dislike most about the holiday season. There are Christmas songs on the radio telling you that it's "the most wonderful time of the year." There are people talking about holiday spirit and holiday cheer. People are decorating trees, buying gifts, and talking about all the parties they will go to and the events that take place during "the holidays." The words "the holidays" are elevated to almost a mythic place, a place where nothing could or should go wrong simply because it's "the holidays."
Even when you don't have actual people telling you to be happy, the message is clear from the environment around you. Our culture in general seems to be over-reliant on the concept of happiness. If you only try hard enough, and work hard enough, you too can be happy - it seems to promise. Only, that's not actually true for many people. Depression, anxiety, and social anxiety are very common events for many people. Life events such as deaths, medical issues and financial issues don't take a break for the holidays. The problem with holiday cheer is that sometimes it creates the feeling within us that we need to be more happy than we actually are. We feel like a failure and somehow less than others for not being as happy as we feel we ought to. This just adds to our depression!
Happiness is a fast moving target. A lot of our happiness seems to depend on how happy we perceive others to be, and how happy we think we "should" be. We might have been doing just fine before we looked around and saw how happy someone else was - or how happy we *thought* they were. Many people fake happiness because they feel the pressure to act happy around others. They feel like they won't be accepted in social situations if they are down in the dumps, so they act. Meanwhile, someone next to them may be internally berating themselves, "If only I could be happy like that person! Why am I so ungrateful? I should be happy!" and base this off of false information. The cycle of being fake, self-comparison and resultant depression keeps going on and on. The holidays add to this by creating an expectation that everyone be happy.
Holidays are a time for families to get together, which is great except for the people who don't have families or have problems with their families. There is a lot of pressure on everyone to be perfect.
People on the autism spectrum often can fall prey to this pattern of thinking they should be happier, because everyone around them seems to be. They don't want to be alone on the holidays, even if it's a holiday they don't celebrate, because no one else is. Holidays can be overwhelming to sensory issues - a lot of noise, sounds, smells, and activity. Parties can be overwhelming to those of us not as socially savvy, and to those of us who are just sick of feeling left out. Also, the holiday season can mess with our routines, cancelling activities we usually do and making people and businesses usually accessible to us closed off for some or all of the holiday season. Holidays, at their worst, are stressful, full of pressure, and disruptive. To many, holidays are a time to be joyful and celebrate, and I definitely try to incorporate as much of that spirit as I can into my daily life in the month of December. But at the end of the day, I'm just praying for January.
My Kryptonite comes in the form of sensory data. Smells in particular. This is kind of hard to avoid when you live in this world and you want to be with people, so this is why, on this cold December day, I am standing outside the museum I used to spend a lot of time in, trying to gather the courage to go inside. Both feet are firmly planted on my favorite brick in the walkway, the one inscribed with a deceased family member's name, as I try to gather strength from her memory. Somehow, standing on that brick just so and looking up at the elegant building centers me, prepares me for the onslaught of sensory and mental overload that I know is coming. Fragrances, chemical smells, or just the idea that these things might exist in any given place - this is enough to completely short-circuit my system.
I open the door, and I walk in, and I freeze, as I usually do, but I make myself keep going. There are places where smells genuinely overwhelm me. Then there are places where it's just the idea of smells that overwhelms me, and it takes some time for me to tell the difference between the two. Often, it's a mixture of the two. My brain is sending me signals telling me how dangerous this is, and anxiety overwhelms my body. People always want to know "What happens to you when you go in buildings?" and I never know how to explain it. How can you? This time, though, I think I might finally have found the words.
It feels like being under attack. It feels like hypervigilance. The sights, the sounds, the motion, but especially the smells and the feelings in your body, come into sharp focus. All I can think and feel is the way my body feels. Everything feels dangerous. I scan the environment looking for threats. My brain gets fuzzy. There is a feeling of pressure on my head. I feel frozen, and a little short of breath. It takes effort to move the limbs of my body in order to take a few steps forward. I've only gotten halfway down the hallway and I already feel like I've ran a marathon. I wonder if I can go any further. I don't want to stop. I've come this far.
I stand in place and stare ahead, begging silently for someone to offer comfort, for something to take me out of this increasingly intolerable inner hell. I try to smile and be companionable to the people around me, but all I can manage is to look suspiciously around me, trying to suss out danger. I take a few steps. There's no one familiar around. No one to act as point of refuge. Everything looks different. I know if I can just get in to the other room, the person I'm looking for might be in there. I try to ignore my thoughts, and move forward slowly, each step feeling like I'm wading through molasses, each step an effort.
I walk through the door of the room to the right, thankful beyond belief there are people in there so I don't have to go to the room I'm most uncomfortable in. A couple older men are familiar, but not enough to talk to. Then, with utter relief, I spot the person who I feel most comfortable with and walk over to her, knowing she'll know what to say, and that she'll realize how hard it was for me to be there. She hugs me, and calls me sweetie, and relief floods me. Words are hard and thick but they come out, so grateful to have a home. She has to leave, though, and rubs my arms before leaving. I am grateful for the affection, but nervous about finding someone else to talk to.
Someone recognizes me and says hello. She has a compassionate energy about her. I forget all my usual manners and ability for small talk, all the superficial questions that people use to create conversations with strangers, and start babbling about how I haven't been here in five months and how nervous I am. Then I backtrack and ask where she's from and try to be "normal," but the words just don't come and I can't think of what to say to try to act casual, and she's telling me that I'm doing fine but I can't quite believe her. She leaves, and then I see someone I know from somewhere else that's friendly and he feels more like an anchor, and he asks if I want to go upstairs with him to the service. I decide to, and manage to sit through the service, the thoughts in my head as usual taking over about ten minutes in, but managing to keep it together long enough to stay.
There is no opportunity for socialization afterwards, but the guy I sat with offers me a ride home and my heart feels full for having been noticed and cared for. I decline because I realize I can't handle a new-to-me car and the walk will do me good, and go to an eatery I like hanging out in because I know I need social interaction to deal with the emotional fallout of having gone in a challenging building, and going to my apartment will make the emotional fall out intolerable. Two hours of thank-God-I'm-connecting-to-something-outside of my brain social interaction later, I feel somewhat safe and stable again.
As I walk from the musuem, I am aware of the feeling of not being able to breathe well, of feeling stiff and agitated and like my internal organs are all squeezed up against each other, but I wonder, was it worth it this time? This time, I think maybe. If this is what I have to do to fill the emotional dead space in me, if this is what I have to do to fill the aching loneliness and emptiness that makes getting up in the morning and living in this body such a challenge, then maybe I can do it. It just would be nice to occasionally have days that don't involve coming to terms with the non-functionality of my body, but since I don't seem to have a lot of options, I'll try my best and write about it after to cope with the emotions from it. Or as they say in Latin - this was painted on the edge of a building I rode my bike by as a kid - "Veni, vedi, veci." I came, I saw, I conquered.
I lost a friend recently, to reasons that were all too familiar to me. She unfriended me after a series of escalating arguments that basically cumulated in "You don't understand me," even though she was telling me my life story and I told her this many times. Sometimes, when people are in too much pain, they are not capable of understanding that other people love and care about them, that other people understand. This is made more difficult when you are on the autism spectrum and already have communication difficulties. Sometimes, you think people have to have an exact match in life circumstances to be able to understand yours. I should know, because I used to be the same way. Tonight, I happened upon some instant messages I sent in 2008 that Facebook had saved. They popped up when I went to send this particular person a message.
I flinched as I read the old message and recalled the circumstance. There was so much anger, fury, and aggression in my writing. I bombarded her with statements along the lines of "How could you possibly forget how much pain I'm in" for asking simple statements about my health. I assumed that if people didn't state it explicitly, they didn't know or understand how I was doing. She was just trying to help, yet I verbally attacked her. I was in the same kind of pan that my friend who recently unfriended me is - the overwhelming, blinding kind of emotional pain where you can't see anything else. I was living with my parents and there was absolutely nothing going right about my life at that time.
Thankfully, I am no longer in that state. But when my former friend started chastizing me for not understanding her, it was all too familiar and I said to myself, "Man, is that how it feels to be on the other side?" I was both hurt by this person, let's call her Amy's verbal attacks and utterly fascinated at the same time. It was like seeing myself in a mirror. Seeing this message I sent in 2008 makes me think further. I complain more than I would like about my life these days, even though I have more than I have ever had before. I'm living in an apartment on my own, and have a level of independence and control over my environment (and the resulting increase in physical/sensory health that that entails). But somehow, I can never talk about the good things I have without also mentioning the bad. I don't seem to have acquired that ability so many seem to have to just be grateful for the blessings in my life. I am, quite frankly, terrified of the negative parts of my life. I am not content to live a life of just barely getting by, of surviving. I did that for too long. I want to be fulfilled to some degree. I want purpose and meaning in my life. I just don't know yet how to get them with all of the limitations I have.
I am no longer fighting with roommates or parents over smells, transportation, or things related to independence. I am thankful, but am I really? My worries about physical safety, sensory issues and physically getting to places have been replaced by a new batch of worries. Namely, what do I do with myself all day to make all the pain that is inherent in life worth living for? How do I feel part of the world, and connected to other human beings? These issues haven't changed in the last several years, it's just I was too busy fighting for physical safety and a fragrance free environment to be able to devote much time to thinking about them. Worries such as how do I handle the increasing level of sensory integration issues I am having with smells, with the feeling of my clothes, and how do I deal with the increasing level of physical pain in my body? How do I deal with these overwhelming physical sensations without having the level of social and emotional connection I need? Is merely surviving enough? I can't get these questions out of my mind. I want to be thankful that I'm not suffering worse. But life doesn't work that way. Does it? I want to fulfull my potential, not just survive, and that has got to be a very human desire. There is no road map to doing this, however.
I want to be thankful for what I have, and I don't want to get back to a level of suffering where I can't see how much other people care about me. But happiness is such a moving target. How can I develop an objective set of data to more accurately measure happiness? I am doing slightly better at communicating my pain and frustration in more articulate, socially acceptable ways. I have in the past year found a couple places in which I could go where I actually felt valued and wanted, and that helped a tremendous amount. I have gained more emotional independence. But nothing in my life comes easily, and the places where I felt safe have become largely not so, due to my chemical sensitivity issues and construction, and I find my mind often dipping back into the "My pain is too much to bear and no one could possibly understand" camp. Let me have the strength to not go there, at least not for too long, and to figure out how to trust others enough that I could possibly dare to hope that they *do* understand and *do* care. Let me have the strength to dwell more in what I can do rather than what I can't, because I may only go a few places but I have satisfying emotional connections, more times than not, with the people in those places. I need to trust this, somehow, and not spend all my time pining for what I don't have.
Signed, So Happy to Be 2014 Me and hoping I don't go back. Positive vibes create more positive vibes but there are times they can be awfully hard to find.
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."