Tuesday, June 24, 2014

"I am having an autistic meltdown."

I had to say those words to a complete stranger on Saturday night, at a point where words were - well, they're never HARD for me because I'm verbal enough to be considered "high functioning", but not where my brain was. It was necessary. It was extremely difficult. And it didn't do any good at all because the person I was addressing didn't know what it meant.





I spent the weekend helping to run a small science fiction convention, one dedicated to "filking" - the musical expression of sf fandom and our lives. We sing, on concert stages or in circles, parodies or original songs (or parodies of those songs. You know you've made it when your original filk is filked.) on the subjects dear to us - novels, movies and tv series, science, space travel, fairy tales and legends, cats, fandom itself, food. So many things. We also sing classic folk songs and even, occasionally, current rock.

I rarely sing, other than choruses in a circle (imagine a campfire singalong with recording devices, chocolate and occasionally whiskey taking the place of the campfire.) I sometimes tell stories. I mostly listen. But this is a convention I help run, and once actually did run it as conchair. Never again.

What I do is run the hospitality or "con" suite. I provide hot and cold drinks, snacks ranging from veggies to candy and sometimes real food. This went very well. Everyone found something they liked - even those with allergies and the increasing number of us with diabetes, there was plenty of it, but not a significant overage, which means I judged things well. I coped with a change in plans with almost no effort; the hotel staff was lovely and every one was happy.

Except me.

I was and am proud of this. It's my main area of competence. I'm happy about those things. But it was also very stressful. In the past, we farmed out a lot of the shopping because we didn't have a car. When we DID have a car, it was fairly large and could hold a lot of stuff.

We own a car again, but it's not a midsized Oldsmobile sedan. It's a compact Hyundai Elantra. We completely filled it with our luggage and whatever I'd gotten in Brooklyn. I mean, we were lucky the rear window wasn't blocked. Fortunately, a friend with a van was willing to help out when we got to New Jersey so we managed to complete the shopping in one trip.

But it was still stressful planning what we needed and getting it, and to add to the stress, we were also going to a wedding Sunday night from the convention and had to bring wedding clothes, too. And I got rather sleep deprived.

So, anyway. It's Saturday morning. I have to worry about Sabbath observances while making sure the con members got their coffee and light breakfast. I'd made three dozen hard cooked eggs but they froze in the little fridges and were not salvageable. This starts at 9AM. By 10AM, we're up and running. And while I have an assistant and there are definitely times he ran it without me - a half hour for lunch which I barely ate (yeah, not smart), and a couple hours in the afternoon so I could catch the end of the charity auction - my husband won the bid on a mountain dulcimer - and then take a nap. Not that I napped much, but I did get to lie down and not be on.

Part of being considered "high functioning" is being able to mimic neurotypical behavior. In this case, being welcoming and happy and social. All of which is an act. For a long time, I thought the act was that I was pretending to be a "good" person, but I've come to realize that I'm pretending to be non-autistic. And it's so automatic that I don't know when it turns on or turns off. Except that when it turns off in public, it can be catastrophic.

And I was "on" for most of the day. I was also eating food that was bad for me, and not eating stuff - especially protein - that I needed. And I was tired. And around 7PM, they put on the major concerts from the guests of honor. In the past, my con suite was several floors away. For me, "out of sight, out of mind" is very real. This time, I was right on top of them. And I could hear them, sort of.  I was also running short of the hard copy book I had with me, but my husband supplied me with another.

I was feeling lonely and neglected and ill-used. In hindsight, there were several solutions to this problem, including simply closing the suite itself - normal for Guest of Honor concerts - but I didn't think of them at the time. They totally didn't occur to me. Shabbat ended, but I was still trapped in the con suite and couldn't leave. I could feel on the verge of tears.

People had to come in, my assistant needed to say evening prayers and then there was the havdallah (separation) ceremony to officially change from Shabbat to weekday. And then my assistant wanted to get his things before relieving me. And I started to cry.

Next thing I know, I'm surrounded by friends - women - worried and hugging and I'm crying too hard to stop. Someone offered to get me water. Someone always does, and I always say yes because it makes them feel better to do something and I figure it can't hurt. Alex walks in prepared to take over, and I can feel I'm the center of attention, which is an awful place to be. And they're all reassuring me how much they love me and what a good job I'm doing and it's very overwhelming. I never know what to do when people say things like that. It's confusing and not something I handle well.

Eventually, I calm down enough to ask one of them to walk me up to my room. I hoped my husband would be there, but he'd just gone up to collect his wallet so he could pay for and collect his dulcimer and take a lesson. That was fine. I ate a big hunk of cheese (PROTEIN!!!!) and turned on my phone to catch the end of a concert livestreamed from Winnipeg. A concert I should have enjoyed but I was feeling detached from everything. Which meant I was still in meltdown mode.

When it ended, I went down to find Jon finishing his lesson and walked him to the elevator. He went up to put the instrument away, but I didn't want to go back right away. I thought he'd be back down soon. He wasn't. I waited. And waited. And then couldn't go up to him because we'd pass in the elevators. I called him, but he didn't answer, and anyway got right out of the elevator.

And then I exploded. In the lobby. Loudly. Loudly enough that we decided to go back to the room to fight in private. Or for me to cry myself out, or something. I don't know.

And hotel security put a foot in the door of the elevator wanting to know how they could help. I tried to explain meltdown and that we needed to go someplace quiet and private, but he kept asking how they could help. Eventually, he let us go, and I started crying again because it was horrible and embarrassing. When I have a meltdown, there's a part of me that sees what's going on and wants to stop and can't, and that part can sometimes make it worse.

We get to our room, and my shouting starts again, fueled by, well, everything. And then they knock on my door. Jon is a bit paranoid and thinks they're cops and slams the door in their faces (which would be a mistake no matter what, but I get why.) But they're just security and we're worried they had a noise complaint.

I get why they did this. The hotel and its safety is their first concern, and they didn't get what was going on, and I suspect in normal circumstances, their intervention would be a good thing. I'm not normal.

Which is when I told them the word in the title of this article. And they offered medical help. After telling us they might have to ask us to leave the hotel, and that still terrifies me days later. I collapse in tears, scared and confused and unable to parse any of this. Where would we go? How would we go? I was in no shape to drive and Jonathan CAN'T.  I have a brother a half mile away but they didn't know that.

They eventually leave, but it's clear our room is not safe anymore. Fortunately, the programming area of our convention is in a separate area of the hotel and it belongs only to us. And I was past the yelling phase. We went there and found one of the many small empty conference rooms and I cried and talked it out and got to the point that I felt calmer - we discussed the plot of the book he'd lent me, which is always calming. And then I decided I needed to knit something.

We went to our friend who ran con security in hopes she had spare needles and yarn. She didn't but noticed I was upset and got the story out of us. And told us that if it ever happened, we should just call her and she'd take care of things. And I started crying again so Jon and I went back to "our" conference room. We knew we'd have to tell the con chair about this, and I was worried about the convention - what harm did we do?

Once again, I got the tears pushed back a bit and we thought we'd find one of the two circles. Before we entered one, another friend met us and got the story, and then the con chair and his girlfriend found us (I was greeted with a hug from the girlfriend, which helped so much. Because then I knew I wasn't in trouble.) I immediately knew Josh (the chair) had been told and I was so, so happy because then I wouldn't have to do it. Thank you, Deb. He reassured me that we'd done the right thing in going through her,and that he'd take care of it. I also explained what an austistic meltdown was. These are people I've known for decades, so I was comfortable telling them this. In fact, doing so helped.

I eventually settled in back of the main room with two women around me, just talking, while Jonathan sang and Josh came back saying everything was resolved. No one, not me and not the convention, was in trouble.  By three am, the tears were pushed back far enough I knew they weren't on a hair trigger and I was just tired. Long, long, LONG day and meltdowns are really exhausting.

I hate them so much. I hate the loss of control and how it makes me look.

Jon and I went back to our smelly hotel room (I mean, it stank from the moment we walked in) and got to bed. And I went to sleep fairly quickly and slept later than I wanted, but Alex was more than competent to open the con suite and I could relax about it.

To my relief, people were extra solicitous (those who knew, which weren't many) but didn't treat me like glass. I was dreading that.

Convention was successful. Con suite was successful. I was...not. But I survived with my marriage and friendships intact. Or maybe stronger. I don't know.

And I was able to tell a complete stranger something that difficult, and if it didn't help me, maybe it'll help someone else down the line. I hope.

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