I just posted this on Facebook and it was so long I thought I could make it into a blog post. I cannot believe I have not posted in here since May. My life has been in turmoil since May and that is probably why. I lived at my friend Rob's for the spring, an apartment in Portland which didn't turn out very well for the summer , and am back at Rob's for the fall and into the winter. Trying to find a way to make my life into a life despite the many problems I have, the chief one being how to go places , what to do with my time, in a way that doesn't aggrevate my chemical sensitivities and problems going into places. How to find a way to be part of a community and interact with people while still keeping my body happy. I have been going to meetups in North Yarmouth and the woman who leads them, Margie, talks about following your passion and your delight and the rest will follow. So today, I saw there was going to be a Hanukkah party at a synagogue in Portland, and even though I had never been in the building and I couldn't get transportation from the friend who was going there, I made up my mind to go. I got a ride to Falmouth, a bus to downtown Portland, another bus to Brighton Ave where the synagogue was located, and met my friend there. It was a difficult thing to do , but I did it. This is what I wrote about it.
I feel completely wasted but I accomplished my goal. My heart is beating so fast it feels like it is beating out of my body. I feel like I can hardly breathe. I am strangely calm about it but I don't know how long I will stay that way. I accomplished my goal. I took the bus from Monument Square to Brighton and St John to get to the synagogue. It was dark out so I didn't know where I was on Brighton and got off three blocks too far. Walking down Brighton in the dark was creepy and a bit scary, it wasn't very well lit. I found the street I needed, Devonshire (ironically the same name of the street mom lives on in Montana) and walked down that, and found the synagogue, Beth El, which I had never been to before.
I spent several minutes outside trying to get the courage to go in. I felt tolerable inside but then when you get to the main area where the Hanukkah party was, man, it was loud, with everyone talking and the music. It was a large room with a lot of tables and chairs and people, but I missed the candle lighting and no one was playing with dreidels. Very little Jewish stuff happening.
I found Janine , with whom without I would have been lost. I felt like I couldn't talk at all. I felt a pressure on my body and felt uncomfortable. I felt like it was physically hard to talk, but I would be damned if I was going to make all the effort to go there and do nothing but talk to Janine (no offense to Janine but I already know her). I asked her how to talk to the others but she didn't really know so I thought, well, I don't really know how to mingle, but I know how to chat with people, so I'll give it a try. So with great effort I put my best smile on and went up to people and said, "Hi, I'm Kate and I'm new at this temple." They introduced themselves and I asked them where they were from, what they did and so on. They asked me the same. With some people, the conversations were rather short, and with others they were longer. I talked to probably 7 or 8 people, I didn't start to the end of the evening so I didn't get to everyone but I got to a lot of people.
Janine knew someone who lived in Brunswick and so could give me a ride home as I was on their way, and fortunately they were even fragrance free as well, I thankfully had no problem with their car. They were very nice, the husband in particular.
The nicest people I met had just moved here from Texas, and said that they didn't think anyone in Maine smiled very much. lol Apparently people are always smiling in Texas, but it is a fake smile they said. The dad was a doctor, in geriatrics, and their daughter, who was 12 but looked and acted much older ,was very pleasant to talk to. We played dreidel a bit. She told me that in ancient Rome or somewhere the reason that people shook hands was they wanted to make sure the other didn't have a knife or some weapon. Isn't that fascinating? I did run into the problem of not liking to shake hands but most people seemed to be understanding of this. The rabbi seemed nice enough, she was a woman.
Everyone told me to come back and I admit if transportation was not a problem it would be tempting, but I can't take feeling this shitty very often so I probably will not. I would however be very tempted to go to services at Bet Ha'am in South Portland, because probably due to their concrete floors or whatever it may be, I found I did not react at all there. I would need transportation there (or back from there) however. Perhaps I could call the office and ask if there is anyone in this area who goes and could give me a ride.
So while emotionally I feel satisfied that I did something meaningful with my day, in all other ways and especially physically I feel very shitty and not able to do much. I feel like I am going to fall over and can barely sit up. I am trying to tolerate it, because I want to be part of this world. But if I let myself think about it, I would be very worried, because functionality in this state is very difficult. I need to be patient until it passes. It better pass soon.
What a day. I did accomplish my goal though. I feel really far away from everything though. I pushed myself to act friendly and to say "normal" things to make conversation and now I just feel half dead .But I wanted conversation, I wanted the experience. We'll see how it turns out for me in the end, I guess, huh?
"You can't explore new oceans if you're not willing to lose sight of the shore." So true.
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."