At home, where we are all supposed to be.
Even though my doctors long ago decided that I did “not have Avoidant Personality Disorder” I still keep up with my AVPD peeps, because our sensibilities and fears are so similar. There is a great group on Tumblr, there are support groups, and most importantly for me, there is the ever effervescent Jenny Lawson, Author of Let’s Pretend This Never Happened and Furiously Happy. She also wrote a fantastic adult coloring book called You Are Here: An owners manual for Dangerous Minds and, as always, her wonderful blog, The Bloggess.
With all the mandated social distancing going on with the, you know, coronavirus global pandemic, (you may have heard something about this) I thought I’d check on the people who were social distancing before it was cool, the AVPD. Specifically, my secret soul sister, Jenny Lawson.
While my anxiety is not as high as it typically is, probably because social distancing is my natural state, I have been afraid of how this virus was going to touch me personally. And when I say that, I don’t mean if I’m going to get sick. Last time I checked, the estimate was that 40-70% of the population was going to catch this virus. That seems pretty likely on some level. I probably should be more worried for myself, I am somewhat immune compromised. I have some pulmonary damage from side effects to an antibiotic I took… There is also a pervading theory that people on the spectrum are more at risk for inflammation. Inflammation, by the way, is how a lot of people are dying of organ failure after becoming sick. (Don’t panic on my account or anything, that’s just a theory that I read. I am so far from a doctor that it’s not even funny. And my husband’s doctorate is in the law. So don’t update your will just yet.)
No, what I am more worried about is who am I going to lose?
My father is medically fragile after years and years of diabetic complications. My mother is an older woman who admittedly does not take care of her health, mostly because she is too busy being a fucking great teacher. My sister and her family are in Chicago, one of the midwest’s viral epicenters. Her baby girl, my niece, is still so young, and deals with her own inflammation issues. And then my biggest fear of all, my husband and son are both on the spectrum. If that inflammation theory has even the smallest truth to it…I can’t even think about what it would mean to lose either of them. I would be lost myself. And I would never recover.
Statistically, it’s probable that over a million people are going to die from complications to this virus. That is why the extreme measures are being taken. I just wish that I could reach out and hug the people in my life, even though you shouldn’t, cause you know, quarantine. But my elderly grandmother that I haven’t seen in years? She is such a cool lady. I just want to be near her again.
My uncle, he is in a wheelchair for his Multiple Sclerosis, but he has this beautiful mind. He is a writer. He gave me one of my all time favorite books. (It was Feast of Love by Charles Baxter. I loved it so much that everything I write has at least one reference to it.) His wife, my aunt on my father’s side, is older than my Dad. She’s an actress. They did these wonderful shows together at Senior centers. He did the writing, she did the singing and acting. She’s always told us that when she sang the old songs, the seniors there would just light up. Like they were young again. I’ve always loved that story.
I have so many wonderful memories from both of them. When I was a little girl, whenever we would visit them, they would have these vintage toys on hand for us to play with, without fail. There was one of those water ring toys, and a basketball button toss kind of game. I think they were my uncles? They didn’t have children, so there was no real reason to have those toys except for their nieces and nephews. I always felt so loved pulling those toys out of the cabinet under their coffee table. (My aunt also gave me my first experience with airbrush make up. Given my love of ASMR, I know now that it was because I felt her love and attention under every sweep of her airbrush.) I can’t lose them either. I think about them, over and over.
One of the hardest things about Rejection Sensitive Dysphoria (and Avoidant Personality Disorder) is that when you cut yourself off from society because of some perceived humiliation or judgement that you felt, you lose important people. Not to a virus, but to your own self quarantine. I haven’t really talked to my aunt and uncle for a while because they witnessed me snap at my mother at a family gathering once. They probably don’t even remember it. But unfortunately, when I think about it, I see what I thought was disappointment on their faces. I couldn’t stand to disappoint two people that meant so much to me. So I stopped trying to see them.
I’m trying to make up for this- all the times that I cut people off because I couldn’t go back. I couldn’t revisit the pain of whatever I felt they thought about me. Friends that were once so important to me were just suddenly cut off…
Hold on, this is gonna get a bit off-topic for a moment, but it will be important I promise you. So hang in there… I don’t really like to name names in this blog but I’m going to for this one time, just to honor what these people meant to me.
As a twelve year old girl, I had a wonderful friend named Leila. She kind of plucked me out of my “new kid fear comatose” and became my friend. She adopted me into her friend group and I would like to say that I added something to that, but honestly, I am not sure. I was having a lot of problems at that time. My autistic traits made it very difficult to navigate being a pre-teen. So when I would become socially burnt out, I would just keep saying, “I’m tired.” It became a bit of a joke. I would say, “I’m tired,” and everyone would go, “Holly’s tired! Surprise, surprise!”
This was the age where my masking really started to take over, but I was probably the most myself when it came to Leila and her friends. BUT I came to a threshold where I had to break away. I was too burnt out, vulnerably hung over from the interaction of friendship. I wanted friendship but it also hurt me, if that makes sense. So, I followed my mask. (For those that don’t know, masking is a way to camouflage being autistic. It’s how most of us survive, and also how most of us are misdiagnosed.) I was masking mostly for my sister at this time, and decided to become a cheerleader. She was a poms dancer, this is technically a different thing, but the uniforms were similar enough for me.
So I left them- my friends. After a while, I stopped talking to them and started making new cheerleading friends. Then I had a new best friend, her name was Jessica. I emulated her in every way, even though that wasn’t who I was. Eventually, I became burnt out with her too, and was “poached” by who would become my best friend for the majority of high school, Emily. She was the one who said she stole me, so I don’t mind calling it like that.
This was a pivotal friendship, for me. Sure, I masked for her too. But her identity was probably one of the closest to my true identity. She was a writer, an actress, and she was so fucking smart (still is. She’s a beautiful poet. Click on my shameless plug of her book.) She also had these other traits that I totally wanted. Like she could will herself into experiences. She wanted experiences so bad that if they weren’t available she was going to make them. One of my favorite stories about her is when she was in college, she made these mix cd’s and then would anonymously deliver them all over campus. She became like this legend. She had great taste in music too, some of my favorites came directly from her mix cd’s. But after I dropped out of college and moved back home, it just wasn’t very feasible to go visit her, so our friendship took a back seat.
That’s when Leila came back into my life. I am not even sure how this happened, but I am pretty sure she saved me again. We worked together at a deli, and had been apart of some of the same school organizations, so we still saw each other. But again, she invited me into her friend group. It was different this time. These people were almost exactly like me. Sure, Jason was way more into science than I was. Tom was much more nature friendly. And Ryan was a better writer than I could have ever been at that time. But they were like me. What I am really saying is they were huge fucking nerds. They all saved me. I was able to really become myself. I was still having trouble with masking, but because I was spending all my time with people with the same interests.. I could be myself. I could explore my own likes and dislikes, my own tastes and pursuits. It was wonderful.
But being autistic doesn’t stop just because you found a place. Rejection Sensitive Dysphoria doesn’t stop. I made some mistakes. I annoyed one person too much, or I made social errors. I had a few emotional crises that resulted in mirroring. (Mirroring is probably the most humiliating thing I do.) These mistakes started to build on each other, and I could feel the fear creeping in. One night, I was pulling up to our friends house where we played board games weekly. Two of them were having an important conversation in the car in front of me. (I didn’t know it was important at the time of course.) So like a goof, I banged on the passenger window and started calling loudly to them. They ignored me until I went away. That was it. That was the beginning of the end. It was that simple. I retreated, and I started the process of cutting them off.
I want to be very clear about something. My friends did nothing wrong that night. RSD is like a funhouse mirror of cognitive distortions. I tell you this because that is how easy your mind can turn on you.
So, at the same time Emily had come back in to my life. She wanted me to move to Philadelphia with her. So I went. I don’t regret this decision. My credit surely does because I got into some pretty big debt– but it was still an experience. And living in Philadelphia’s chinatown or my tiny closet apartment off Rittenhouse square, these were all interesting experience that I lived through. I can’t regret that.
But I always regretted Leila, and Jason, and Tom, and Ryan. All of them. Years later, Leila and I tried to reconnect. But I had hurt them all when I left. So I think it was too much for her. The way I tried to justify it to her still rings in my ears sometimes. With my limited frame of reference, I was honestly trying to explain being autistic without knowing it, but it came off as so callous…I know that now.
I still miss them.
I tried to keep up with them from afar over facebook. Leila and Jason got married. The pictures were so beautiful. (They sweetly came to my wedding traveling all the way across the country just to have a minute with John and I.) Ryan just got married too. I don’t see a lot of Tom but I hope he’s doing well.
The point I am making is that self quarantining was something that some of us were doing long before this pandemic hit. And though we did not die, we suffered. We lost, almost everything. I’ve been cutting and running from people as long as I can remember. Never knowing why or what I was running from other than myself. So if someone in your life is shutting you out, it might not be about you. You can’t control the damage that they are doing to themselves- I don’t think Leila could have saved me again if she tried. But you can at least have the solace of knowing that it wasn’t you they were running from.
One day, disorders won’t be so taboo. It will just be another type of person, like left handed or dyslexic. Then these differences will be understood and the hurt can stop.
So that’s what I hope to be doing during the plague years. Spreading knowledge to save lives….
And staying in my house, like I am supposed to.