I had no idea it would feel this good. Driving through Yarmouth with a friend of mine on our way to a meetup I had been going to for almost two years in an adjacent town, I felt a sense of joy.
Two weeks previously, I had moved from a friend's house in Yarmouth. I had been living there for a year, and although I enjoyed the friend I had felt suffocated there because I didn't drive, and there was no public transportation to and from Yarmouth.
The beginning of my new but long-awaited living situation in Portland was rocky, but seemed to smooth out a little bit as the weeks went on. I was surprised by the sudden surge of joy at driving through Yarmouth without feeling tethered to it, though. The joy did not come from being in Yarmouth itself. No, it was an intense joy at being in Yarmouth without living in it. Without being tied to it, without trying so desperately every single day to get out of it.
"GOOD RIDDANCE YARMOUTH!" I thought to myself gleefully as we drove through (our trip of which was extended because I apparently still have the ability to get lost in Yarmouth despite having spent so much of my life in or around it.)
I grew up in Cumberland, adjacent to Yarmouth, and spent a lot of my childhood there for various reasons. So Yarmouth has meant a lot of different things to me over the years. It's funny how that works, how any one stimulus can take on so many different meanings. The convenience store Handy Andy's could either be where we got ice cream as kids before Food Stop opened up their ice cream window, and where my younger brother Spencer and I would ride our bikes to, or it could be where my friend had wanted to take walks by on Sunday afternoons (while in my head I was desperately pining to get to Portland and the hell out of Dodge). It symbolized both childhood fulfillment (the independence of riding my bike all the way to Yarmouth!) and adult longing (wanting to get out of town and into something that fit me better).
But today, after a year of feeling absolutely suffocated in Yarmouth, I was simply glad to not be living there. There is nothing wrong with Yarmouth per se. If I had a car and a place to live that met my environmental needs, I am sure I'd be very happy there. There is Royal River, a cute but small downtown and a lot of things nearby. But when you don't drive and there's no bus, Yarmouth feels very suffocating.
It renews my strength and efforts to want to try to figure out how to make my current living situation work. I love living in Portland. I am still at the rather overwhelmed stage of all of a sudden having all of these opportunities and things to do, but no structure to fit them into... but I hope a structure and routine will develop. Currently I leave the apartment, situated very close to the ocean and about a mile from downtown Portland, early to mid afternoon and get the #1 bus to downtown. I spend my time between the Jewish museum I volunteer at, the Public Market and gelato place where I often hang out, and any various social activities, lectures or other events I can find going on in the evening that I feel brave enough to venture out to. Whole Foods, as well - my default hang out place when there's nowhere else to go, and the only consistent thing in my life since my life started to fall apart in 2007.
Little by little, I find my way back to myself. Reminding myself, of course, of the one step forward, two steps backwards rule that seems so common. On Sunday, I went into Longfellow Books, a bookstore I used to love downtown, an hour before they closed. I ran my hands over the spines of the books, marvelling in the way they felt under my fingers. I delighted in the intruiging titles, the newspapers, the magazines, the funny humor selection... the whole world that was created in the bookstore that was apart from the one I was so sick of living in in my head. This would seem so simple, so ordinary to everyone else... Yet it was revolutionary to me.
I got brave and went into a Walgreens on the same day. Again, pretty normal for most people, but not for me. I developed chemical sensitivities in 2007 and little by little was forced to stop going into pretty much all public buildings for several years due to chemical and fragrance reactions. It was pretty traumatic for me.
Last Christmas, I made a decision to try to start doing new things again. Knowing that some of my reactions are anxiety based and some are chemical based, I made a decision to try to see which was which. It didn't really work very well until I happened upon social events rather than just going into buildings for the hell of it. I noticed that if I was brave enough to go to a social event in a new building and was able to be distracted talking to someone, the symptoms didn't bother me nearly as much. For example, Panera Bread was not nearly as scary when I was at a book club having some wonderfully intellectual and meaningful discussion about a book with others. Having success with social events in new buildings made it slightly easier for me to entertain the idea of going into other places. I still can't go into 90% of places, but slowly and surely I am trying more places every week. The key is to do in a time and rate that feels comfortable for me, because if I don't feel properly supported and okay about what I am doing, I will just be re-traumatized. My mind is given to be becoming traumatized rather easily. I am impatient but realistic at the same time.
I am trying to take back my world. I am starting to catch rare glimpses of myself, to feel like me again, the me that existed prior to 2007. It's an amazing feeling when it comes. Sometimes, though, I get so overwhelmed with how far I have to go that I just want to cry and cry. And I do. But usually I am lucky enough that someone will catch me and give me the encouragement I need to go on. I am so tired of catching myself, of being an island. No man is an island, no man can live without encouragement. Those in my past who have accused me of playing a victim hurt me deeply in doing so, although I know it wasn't their intention. I don't know how to get these very important people to me to see that everyone just needs to be heard. People don't need others to solve their problems, they need people to HEAR their problems.
And if there's one thing we can all do, it's hear each other. We all have ears, a mind, emotions to use in perspective taking. Most people choose not to use them because the weight of emotions is more than they can bear. But those that are able and willing to use it are a gift indeed.
The meetup I went to in North Yarmouth tonight had 15 people. Fifteen wonderful people all wanting and eager to devote three hours of a Tuesday night into listening to the stories of others. Three plus hours spent encouraging others, and making them feel heard, as well as telling their own stories. Almost everyone had to travel a minimum of twenty minutes to get there, most of them far more. Probably a third to a half had nearly an hour to travel. But, for the chance to share and bear witness to the stories of others, they gladly did so. I cannot think of a better gift that one person can give another. It filled my soul. It always does. I have a tendency to start feeling desperate by the time the two week mark rolls around. But I have never left that meetup without feeling my soul replenished, without feeling like I had the energy to try again anew. No matter how dire my circumstances feel before each meetup, and they have often been pretty dire, I always leave convinced that at the very least I can try to change my attitude. We all know these intentions don't always last as long as we'd like them to, but the more opportunity we have to practice and the more encouragement, support and opportunity to interact with other people following similar paths that we have... .the more likely it is to happen on a more regular basis.
These are people trying to figure out how to be at peace with themselves, the world , and their relationships. They all have different stories and different struggles, and different ways of expressing them. Yet, when their story is told, you can almost always find that you have something you can relate to in their story. That makes it feel like you're given the rare opportunity to just be human together... and feel each other's humannness. I've been going to these meetups for nearly two years and for most of them up until the last couple months I almost felt like other people's stories were something I had to suffer through in order to get to my turn to talk. But then tonight for the first time, I was able to sit calmly and really listen to other people's stories, and to see myself in them. I was able to interject comments and relate to others without the overwhelming anxiety that usually would precede me talking in a group (which never stopped me, but wasn't pleasant either).
The absence of the agitation was remarkable. I hope it lasts. I had a rare opportunity of feeling understood shortly before I came to the group, so I am thinking maybe that allowed me to be calm enough to really be present. Who knows. Either way, observing the difference in myself and the way I perceive being in this group over the last two years is really fascinating for me to do. None of the concepts we talked about ever made sense to me for most of the first year or longer. Only in the last two months or so have I all of a sudden awoken to the realization that every single thing the group leader says actually is true or actually seems to have meaning in the context of my life. There is a lot of discussion about spiritual truths and concepts that all seemed very esoteric until now. You have to get to a point of trusting in yourself and the universe before any of it would make any sense at all.
Even though I didn't believe in most of what was being said, I am well versed in needing to take things with a grain of salt. I don't have so many social opportunities in my life that I would pass up one with extremely nice, wonderful, nurturing people just because some of what they said went over my head. I listen to country music, after all. Most of the country songs I listen to have stories I can't necessarily identify with, but emotions expressed in the songs that I identify with more than anything else in the world. In other words, I think I'm learning that you shouldn't necessarily pay attention to people's words, but instead you should try to pay attention to how they say something, their tone of voice and the overall feeling they're trying to communicate. It's a tough message for someone who's spent her life buried in intellect and who has always communicated only in words and ideas - to focus on feelings without the barrier of intellect. I still don't quite know how to do it. But I know I'm going in the right direction and I can only imagine what wonderful things await me once I have a little more practice with it. And I know I have the right place to explore it in.
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."