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.
What do you think of when you think of Hanukkah celebrations? Probably you think of some combination of menorahs, dreidels, and latkes. Get-togethers with family and friends, music, typical holiday celebrations.
At the age of 30, I have unfortunately more struggles with doing anything in life in a so-called typical fashion than I would like to admit. Extreme sensory issues and social anxiety make nearly every life activity pure torture for me. People's perfume and body care products, cleaning products, and general building smells make most public (and private) spaces inaccessible to me. Social anxiety and Asperger's make it hard for me to really enjoy the opportunities I do have. I still never give up, however, on finding a way to somehow make life meaningful for me. I don't want to just survive, I want to thrive. If I have to do it by radically altering every activity I participate in so that I can tolerate it, or working hard to change my mental framework of what meaningful is so that it matches what I'm able to do, then I'll do it.
It was with this attitude that I contemplated how I would make Hanukkah meaningful for myself. I had started to become sensitive to some smells in the room where a Hanukkah celebration I wanted to attend was going to be held, and was deeply dissapointed to not be able to participate. I attempted to go to a city Hanukkah celebration and managed to be present, but smells in the environment made me so tense and on survival mode that it was all I could do to get through it. Lighting a menorah by myself had no appeal. I joked with someone that maybe simply listening to my favorite Hanukkah song, "Light One Candle" by Peter, Paul and Mary would suffice as a celebration.
"Light one candle for the pain they endured
When their right to exist was denied
Light one candle for the strength that we need
To never become our own foe
Light one candle for all we believe in
That anger not tear us apart
And light one candle to find us together
With peace as the song in our hearts"
With these words in mind, I offer the following contemplation. The story of Hanukkah centers around believing you only have enough oil to last one night, but having it last eight days. A Hanukkah miracle. We light a menorah to commemorate it. .
But what if we extended the metaphor?
Menorahs are not the only thing that hold light. People hold light, too. In our world, it is very common for people to not believe that they have enough positive light inside themselves for others to like them. Anxiety about whether we're good enough is a common experience. Sometimes, though, when you don't think you have enough light or goodness in you for the social connections you need, you are surprised and find out that others can see more light in you than you can.
I spent most of today at a coffee shop I go to, one of the few places in the city I feel comfortable. I've gotten to know someone who works there, and have wonderful conversations with her when she's working. We talked off and on for several hours today, and my heavy burdens had somehow dissapeared by the end of the day with her. I told her of my dilemma of wanting to celebrate the holiday somehow, and not thinking I'd be able to. I could see in her eyes that she really cared. She made respectful suggestions, asked more questions, and just seemed to understand the difficulty I was experiencing. In short, I felt heard. That is such a rare feeling for me, to feel heard. One could say it was my version of a Hanukkah miracle. The warmth and light kept coming from her, surprising the voice in my head that said I wasn't good enough.
Menorahs, dreidels and latkes are placeholders for the rich history of Hanukkah, and for whatever childhood memories of celebration we might be trying to keep alive. But we should not be so attached to these ways of celebrating that we can't see these principles of Hanukkah in other places in our lives. The Macabees fought for the right to practice their religion and to be who they were. I fight for the right to be who I am, quirks and all, without that little voice in my head telling me I'm no good. Hanukkah commemorates the day the Macabees took the temple back from the Hellenistic authorities and made it their own. Perhaps, for me, Hanukkah can celebrate the day I take back control of the thoughts in my mind, and decide that what I have and who I am is good enough for the world I live in.
Perhaps finding unique ways to celebrate Hanukkah and to make it your own is exactly what the point is, given how hard the Macabees fought to preserve their culture and heritage. When we light the menorah, we light it in the dark to show how light can illuminate the darkest of times. It is a symbol of hope. My conversation today was a symbol of hope in the difficulty of my life. Let there be light, in our menorahs and in our hearts and souls, on this week of Hanukkah.
"Are you sure you're okay? You seem a little agitated. Are you sure you don't want to go?" The well meaning questions. "I'll be fine as soon as I get to talk to people a little," I thought, and every single time, I was. She seemed surprised by how quickly I could go from that agitated to that outgoing, happy and in my element. Hell, I was too.
But now it seems so obvious.
Feelings of sadness triggered feelings of fear Feelings of sadness triggered worries of abandonment Feelings of sadness caused me to panic, because the connection to others was gone Any sort of physical or emotional sensation caused me to immediately feel isolated, and that caused me to panic
A smile, a warm greeting, casual chit chat stitched me back together, every time Agitation was no match for social inclusion In the warm smile of another, I was whole again
Some day I will figure out how to get this feeling when I am alone. But for now, I'll settle knowing that I can feel okay again in the company of another warm, open soul. I'll get there. I am traveling this road of self-discovery and I will find the keys to self-love in due time.
Rambling from Facebook I deemed interesting enough to put here....
I don't want to go to bed because I want to rest first. I am avoiding everything. Maybe if I lie down for an hour it will qualify as resting and I can deal with what I have to deal with and actually go to bed... I went to the place I've been volunteering for an hour and interviewed one more person. Hopefully I haven't lost the papers yet. I'd like to get up by 10 but I guess that depends on when I go to bed. Maybe I could go back around 1230 for another couple hrs. Then have appt at 3pm. Have to call someone to figure out if I can get a ride to synagogue. Have to figure out if I'm going to synagogue. Have to email re weekend plans. Why am I avoiding relatively simple things? Just for the sake of avoiding, sometimes, it seems.
Day after day I do this, and maybe I am coping. Maybe, technically speaking, I am coping. If you took the gestalt of my life and tried to describe it with a sentence, what would it be? I wonder that so often.
But maybe, when you take the gestalt and big picture of life, maybe I am coping, and maybe that's all that's *really* required of life. Enough food to sustain me, enough social interaction to sustain me, just enough activity to fill my time, but all with such great effort. I agree that it's probably useless to spend as much time as I do looking for the meaning in things. It's not going to come through intellect. It's just going to happen when it does. But human minds want to make sense of our suffering, of our existence, of our role.
So I am coping and maybe that's enough. I am suffering, but I am coping. I am meeting the minimum requirements for life. Well, that's a start. I put out to the universe that I am enough. If all I can say about life is that I can cope with it, that would be a start. Because most days I feel like I can't. So I'll say it over and over again, I'll write it again and again if I have to, so I can actually feel the words, feel what they mean. I am coping. I am coping. I am taking my emotional pain and finding places I can tolerate going, like the meetup I went to tonight, to share it and examine it and make it hurt less. Even as I say "It's not enough" I need to be mindful that just maybe it could be. Even as I cry out that I need more places that I can go, I need to be mindful of the beautiful connections I have in the places I do go. When I say it's enough is when I can start to enjoy it, probably.
When I get overwhelmed by things I have to do, I should be mindful that I have the ability to do them even if I am tired by the routine and the effort. There are some that truly can't. I am enough. I have enough. My life is enough. I am trying these sentences on for size. I want to feel satisfied. I want to feel okay. I want to feel peaceful, calm, satisfied, connected to others. I want to feel like I matter to others. I want to laugh and have a sense of joy and fun with others. I want to see the beauty in others and in myself.
I don't know if this will happen, but I am trying to state it in a positive way, instead of a negative way. Just for the hell of it. I'm going to go let myself lie down for an hour and come back.
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."