When I was a kid, my mother did a lot of community theater, and I was in charge of costuming and makeup because I was this mature little wunderkind. All of the grownups thought of me as a kind of small grown up. Another couple in the theater group had two kids around my age. While our parents were at a cast party those kids stayed at my house one night. The son was very outgoing and fun, but the daughter didn’t say much and wouldn’t really talk or anything. I, being the “hostess” (I was probably eleven and they were in middle school), was in “please everyone mode.” I kept trying to lure her out of her shell because I wanted her to have a good time like the other kids.
And that was the first time that D. and I hung out.
“A tragic comedy of eminent domain…”
A few years later, when I was a Freshman in high school and D. had just graduated, we were not friends, but saw each other in passing at different theater functions. I was doing light and sound tech and stage management at that point, and her parents and uncle were heavily involved with the community theater group. I worked for the arts foundation that sponsored the group and was on the board for both, and we had gotten a grant for a local Thezbian (Randy, artiste extraordinaire) to write a play about two towns that are now under Summersville lake.
Gad and Sparks were both demolished and flooded in the 60’s to create the largest man-made lake in West Virginia, Summersville Lake. The play was about an old Appalachian woman who had lived on the outskirts of the town of Gad all her life, and her struggle with the government as they tried to take her home and dam the Gauley River to create what is now Rt. 19. Rt 19 ultimately made the town of Summersville become the city of Summersville, and Summersville dethroned Richwood as country seat of Nicholas County, West Virginia soon after.
Summersville is where I grew up. Richwood is where my mother is now being eaten by cancer.
Are we all caught up?
I was the production manager for Gad, and D.’s mother, father, and uncle were in the play along with my mother. D. worked at Mr. Movie and had been living in an apartment with her boyfriend, who worked at Dairy Queen. D.’s boyfriend had left her for another girl, a fatter, uglier girl, I would later find out, and D. was distraught… so her mother had been dragging her to rehearsals to get her out of the house. D. would sit at rehearsals with a huge notebook and she wouldn’t really speak to anyone. She definitely wouldn’t smile.
I decided that D. needed to be my friend because I didn’t have any friends who weren’t grown ups and she was as close to my age and as close to a teenage girl as I could muster. So I tried to talk to her, unsuccessfully. After several failed attempts I went the long way and talked to her mother. I found out all about the breakup and the apartment and D.’s job at the movie store that just made her obsession with movies all the worse. I found out that D. had no friends and that her mother had always worried and fussed over how weird she was, considering that D.’s brother was so outgoing and made friends easily.
D. was a problem for her mother, and I declared that D. was a problem that I was going to fix for her family.
So I invited myself over to D.’s for a sleepover.
It was really as tactless as that.
I walked over to the girl and I said that she should have me over tonight for a sleepover and asked what I could bring. She said okay, but that I didn’t need to bring anything. After play rehearsal I, 15 at the time, asked my mom to stop and get us some chips and some wine coolers. My mom, being the type of mother who was more of a friend than a mother, acquiesced.
D. and I have been friends ever since. We found each other because we needed to.
No One Here But Us Lesbians!
As grown-up type people, D. and I live very very different lives. Yes, we both write. We both have close to zero real-world friends. We both have social lives squirreled away on the internet. She’s a lesbian. I’m pansexual. Neither of us is good with women, or men, or people. We both have strained relationships with our mothers who, although we know they love us, have done wrong by us most of our lives by making the wrong decisions about raising us because they weren’t armed with the correct tools at the time. We both have horrible tantrums, and crazy health issues. We’re both depressed. We’re both desperate for someone, anyone to understand us and love us.
But outwardly… D. is living on full government disability in a trailer in her parents backyard in West Virginia. She has not, essentially, changed since I met her when she was 19, except that she has probably gotten worse. She wasn’t cutting herself nearly as much when she was 19 and we were together all the time. In fact, it was really when I went away to college that she got bad with her cutting. And she was still working and being a contributing member of society at 19… which she just can’t be now. She can’t stand people. She still doesn’t smile. She’s just oh so alone.
I, on the other hand, got knocked up by my internet boyfriend when I was 19 and have had a fun adventure since then. When I met D. I was obsessed with the X-Files and heavily involved with community theater (as was obvious already) and I was kind of a loner, and weird, and friendless… but I faked it well enough. But when I had my son, I had to learn to fake it better. Suddenly it wasn’t about me, it was about this little baby who needed me, and I had to do things to take care of it. My boy really was an it the first year of his life. I had horrible postpartum depression and was in a nowhere relationship with his abusive biological father who ignored me to play EverQuest. The baby was a thing to be dealt with, and I did the best I could.
I pretty much lived with D. during my pregnancy because my mother was so heartbroken that her smart, perfect, fat little baby girl had gotten pregnant out of wedlock that we fought constantly. I couldn’t stand D., however. She wasn’t “useful.” (No non-pregnant woman was.) She wasn’t carrying a life, and I knew then… that she would be a child forever. That was the big gap that developed between us, I think… my son. My son was the big gap between me and my mother because he ended my unhealthy codependent relationship with her… and with D. because he made me see that D. could not grow with me as a person, as much as I needed and wanted her to. And I resented her because I didn’t want to be this grown up. I just wanted things to stay like they were.
Now I’m married to the man of my dreams and I have a cushy corporate job with fat benefits and a big house an a reliable car. Yes, I’m on Long-Term Disability from work, but it’s due to a medical condition that I can’t help, as opposed to D.’s inability to do anything to better herself…
Or so I thought until I took that damn Asperger quiz.
Aspergirls and Stimming
All of this does have a point, and, if you’re ready for it, I promise I will get to it in a moment.
My husband has a hard time maintaining friendships and has very stilted relationships with his family. As a rational human being, he knows this isn’t necessarily normal. He thinks he has Fragile-X but won’t lower himself to be evaluated by a mental health care professional. He heard a story on NPR about a guy who was diagnosed with Aspergers late in life because of a quiz his wife found for him online.
So my little family took the quiz, and I thought it would be a fun exercise in showing us how normal the three of us actually are. As you may recall from the quiz results I posted on my blog a bit ago, and while my husband and son turned out as neurotypical as can be, I scored high on the Aspie scale.
I genuinely had no idea that the things that I’ve been working so hard to overcome my entire life aren’t things that everyone had to work hard to overcome. I thought, sure, I have some social anxiety, but I’m a good actress and I can fake my way through anything if I have a point of reference. I didn’t realize that my husband thought I should take the quiz because he has thought that my OCD rituals to bathe and leave the house are excessive, or that my constant repetition is weird, or that my cute clapping and crying about things when I’m happy is odd, or the fact that I like to hide and sneak around is peculiar, or that my obsessive planning before social situations was different. I did not know that my son thinks that having to ask for hugs and kisses is unnatural and that he’s frightened of my tantrums or that my tone of voice is upsetting to my family.
I did not think that my inability to make and definitely to keep friends was something that was wrong with me, I just thought that I was bad at choosing the right people to be my friends.
I really didn’t know that all my life I’ve been wholly different than a large part of the human population. I have always joked about thinking that everyone is just like me and they just pretend to like different things to make the world interesting for me to live in… but it isn’t really a joke. I really don’t understand why anyone could ever like olives or pickles or being touched by people casually.
I really had no idea that I might have Aspergers. I just thought I was weird and unlikeable.
So here is where I am with the whole thing, and I know I promised a point… getting there, pinky swear. I don’t think that having Aspergers is a bad thing. I know people with Aspergers, and they’re awesome and sexy creatures of logic and reason that I dig entirely. Aspergers is a gift, not a disability. How cool is it to be a little smarter than the average bear, and a little more aware of your surroundings, and a little less bogged down by layers of societal bullshit with which everyone is heaped? How cool is it that I could be part of a growing population of adults just discovering that they are special in this really weird way that makes them so fucking self-centered, and yet so honest and open at the same time? I mean really, I feel like a door has been opened in my life and I can look back at all of the depression and all of the failed friendships and relationships and instead of wondering and crying I can understand what caused them and possibly avoid making the same mistakes in the future. God has blessed me and my family with this shiny new tool box and handbook that lets us figure out how I work and how to fix many of the broken things in our love and life. That’s the most amazing gift I have ever received.
I don’t know that I have Aspergers Syndrome. I do know that it is likely, and that it feels right, and that everything that I have learned and read in this short time since 4/9 speaks to me in a way that NOTHING has ever spoken to me before. I am working on getting screened and also having my son screened so we can have some official diagnosis attached to things. Having that is a big step in what I feel is the right direction for living the rest of our lives much much more fully.
I’m reading a book called Aspergirls by Rudy Simone from which I have learned that only 1 in 4 people diagnosed with Aspergers are women, and that it is theorized that this is NOT because women don’t get Aspergers, but because so many women are misdiagnosed with so many other mental/behavioural disorders! Think about how many people are walking around right now who have no idea that they are different in a way that is absolutely valid and okay to be different, but who feel at complete odds with the world around them because they just don’t have a NAME for how they are different. It overwhelms me to think that the moment of epiphany that I am living right now is happening to so many people these days, but not as many people as it should be.
Which brings me, finally, to the much-promised point, and back to my friend D..
In Aspergirls, the author discusses “stimming” which I can only assume stands for a certain kind of stimulation or lack thereof. When people with Autism or Aspergers are having a tantrum, upset, or even happy and excited, they stim. They jump, spin, rock, run. They do these things to calm themselves and tune out the things that are triggering the negative feelings within them. When I am agitated I first flee, then I lock myself in the bathroom and lean against the wall. Sometimes I rock. I also scratch my thighs when it’s really bad. I pick at my face. I have a list of things that I do that are odd when I am upset. The author also talks about the fact that self-harm is not the norm for Apsergers stimming, but can happen as the result of suppressed stimming, bullying, abuse, etc.
D. is a cutter. She’s not shy about it. She has words and lines and all sorts of things carved into her entire body. In a way it’s beautiful, but mostly it’s sad. I made the mistake of telling her I found it sexy once, which is true… I do like cuts, but it was wrong to enable her like that. She does it when she has been set off by one of the many many things that set her off…
And as I was reading my book last night I was thinking about D. and her cutting and her sad, stunted life in West Virginia… and how she always “got” me when no one else did, even though she didn’t grow along through life with me…
And I thought, “D. needs to take the quiz.”
And so D. did last night at 3 AM while right after I messaged her about it. D., like me, and like many people with Aspergers, has a fucked up sleeping schedule.
D. doesn’t see, yet, why this is a good thing to find out. Yet, with all the problems with holding jobs and dealing with people, and with all of the battles in court she has done to keep her disability because of her mental health… this can only help her. It just further cements the foundations of our friendship. I always understood that D. had medical reasons for her situation, but I never understood that, just as I beat myself up for my inability to overcome certain things, I have held her to the same unrealistic expectations.
Even if it turns out that Aspergers is not the correct diagnosis for me, I really hope that this can improve her life, like I think it will improve mine. I hope hope hope.