Last night, I had a killer migraine. Usually, when I feel a migraine coming on, I take a tablet of Sumatriptan, which stops the migraine in its tracks. It has always worked—until last night. The migraine didn’t respond to medication at all. By 8 pm, I was so nauseous and shaky that I needed Bob to help me navigate to the living room so I could lie down. I couldn’t bear to open my eyes; any kind of light was like torture. I couldn’t even look at the fire in the woodstove. I had the dry heaves, and at one point, I went into shutdown and couldn’t speak or move at all.
But mostly, for about two hours, I stimmed almost constantly—rocking, hand flapping, hitting my head with my fist, over and over. It actually helped—a lot. I’m not sure how much it helped to reduce the pain, but it certainly soothed me in the midst of it. As I went through the whole ordeal, it became clear that a lot of pressure has been building in me. Some of it has to do with Bob’s daughter, and even more of it has to do with my almost continuous anxiety and my drive to figure things out. My poor mind felt so incredibly tired last night, as though I’d overworked it to the point that it was literally screaming at me to stop.
Once my defenses were down, I finally saw what most of the pressure is about: I feel like a freak.
There, I said it. I feel like a freak. I feel like a freak to the point that I don’t want to go outside and be seen with my stupid headset on, or try to talk to anyone, or do anything out there at all. I just want to hide. Watching how naturally the stimming came to me, and how much it helped, brought the issue out into the open. I thought, “Wow, I’m really autistic. Look at what I’m doing—all those things that I’ve been taught are sick and strange and wrong.” Then I realized that I feel sick and strange and wrong, pretty much all of the time, and I’m exhausted by it. It takes so much work to defend against the feeling, to avoid it, to tip-toe around it, to change it. Last night, I hit a wall of exhaustion, and my feelings about myself came pouring out.
I feel like my whole life is strategy. The spring is here, the days are warmer, and I want to go out and enjoy it all. But how do I deal with the neighbors? Do I take off my headset and talk to them? If so, how often? Will they think I’m anti-social if I don’t? Should I have Bob explain the situation to them? All these questions have been circulating through my mind for weeks, and I can’t find any answers. I’m afraid to try anything. I’m completely stuck.
Feeling like a freak puts me in a terrible trap. If people believe that I’m really autistic, I’m afraid that they’ll see my headset and my silence as bizarre, and they’ll just ignore me, which will make me feel even more isolated than I already feel. If they don’t think I’m autistic, then they’ll think I’m putting on an act. If they only knew that my whole life up to this point has been an act! I wish there were a third alternative, that went something like: “They will know that the way I am is normal for me, and they will meet me where I am.” But I can’t depend on that response, to put it mildly. At the thrift store, they meet me where I am more often than not, but I’m always afraid that all that will go away.
I’m always afraid, it seems. Sometimes, it lays me low, and sometimes, I just carry it and keep going. Physically and emotionally, I feel things so acutely that it’s hard to feel resilient, and it’s hard to know when something will total me.
I still want to be normal, so much. Not because normal is better, but because it’s physically easier. I’d give almost anything for one day in which I could do anything I want without risk of overload. I’d give almost anything for one day in which I could keep a conversation with a neighbor going for as long as I want. I’d give almost anything to be able to go to a restaurant or a movie without needing three days to recuperate.
But that’s not my life, and very little has prepared me for who I really am.
Even as I write this, I know that someone will read it and think, “Wow, so I’m not the only one.” And then I’ll remember that I’m not the only one, either.
© 2010 by Rachel Cohen-Rottenberg
You aren’t the only one. I’m not autistic but my son is on the spectrum. I do, however, know about social anxiety. At least take some pressure off yourself about that one. Don’t stress so much about what the neighbors think. I remember walking around my neighborhood listening to lectures on my MP3 player. If I saw a neighbor out and they looked my way, I would just lift a hand in acknowledgment. There were a couple of ladies who would sometimes try to engage me in conversation. I would just stop and smile politely; answer their questions briefly; and basically let them lead the conversation until it appeared over and then I would just start walking again and say something like, “OK, bye!”
Maybe the difference is that I don’t care much that I am not good at chit-chat and you do. Just keep it basic and don’t worry so much about whether they think you are wierd. Maybe your husband can be the social one for the both of you.
You’re not the only one! You’re not the only one! You’re not the only one! You have no idea how much you’re not the only one! I don’t think I’ve ever commented on your blog but, I’ve been reading for several months and I struggle so much with the exact things you write about. I’m 33 and diagnosed this past year but, suspected for the past few years. I mean it’s been pretty freaking obviously my whole life, but it got masked by other things people thought it was like just depression but, I’ve always known there something more underlying that caused the depression. Anyhow, I am trying to learn how to restructure my life with pretty much NO family support. I’m so burned out as it is and people I’m just meeting or family who’ve known me for years don’t understand the concept of being overloaded by simple conversation(to them) where they ask me questions. At a point sometime in the conversation sometimes I have to tell people I’m overstimulated by all the questions and there’s just this eeling of tension that immediately comes up on the other persons part. This is with a good friend too. Who really tries to meet me where I’m at but, JUST DOESN’T get it!!!!!!!! It just does not compute some of the struggles I have. She VERY outgoing and has no problems with back and forth conversation. She tries but, it doesn’t make it easier for me and still makes me feel like I can’t go to her if I’m really struggling with something because I don’t always need to talk about things or maybe just brief explainations. Her natural tendency of wanting to know and understand a situation causes her to ask many questions and while I appreciate her desire to understand, it becomes counterproductive to me. Sometimes I just need to be with another person and say what I’m able to say without people prompting me with questions and yet I don’t want them to feel stifled to not be able to ask questions and get a better understanding of a situation. I just wish people in my life unerstood or use as a motto w/me “If in doubt of how to respond, just be.” People can never go wrong with just being. The problem is that It’s really hard to fake just being. I am hyperaware if someone is struggling, if there mind is really in it or not and that makes it hard for me to relax too. All these things are so exhausting to think about and write about but, I need to get them out sometimes. I wish people in my life got it. Okay, I’m done for now. I need to go be.
did you ever watch “lost in space?” there’s a robot who’s kind of the protector/friend of one of the main characters, a boy named will robinson. whenever the robot senses the presence of something potentially threatening, he flails his arms and says, “danger, will robinson! danger!”
i love that robot. sometimes i wish i had one who would say, “upcoming overload, upcoming overload, danger! danger!” but in a way, i do. i sometimes think that’s what stimming is about. (actually, now that i think about it, the robot is kind of hand-flapping.)
i have so much to say about exhaustion and overload and feeling freaky. they go so hand-in-hand. often the overload comes from feeling freaky to begin with—how much effort it takes to be social, not to go into a panic over being social, hoping i won’t say/do the wrong thing, hoping i won’t be misinterpreted, etc. hoping i’ll just seem somehow normal. hoping i won’t melt-down or shutdown.
and then i stim, or i talk to myself non-stop, or i shut down and sleep all day, etc. and sometimes people just think i’m even WEIRDER!!!!!!
but i don’t know. sometimes i’m strangely grateful for the stimming too, because sometimes it does alert me to “danger” or that something in the situation just isn’t what it seems, or isn’t right for me, and my body knows all that.
there’s really no huger point here. i just wanted to let that out, because it’s been really “big” lately for me too. thank you so much for this post.
Hi Rachel,
I totally understand. Even in the best possible company, I was out of work for a day and a half after Passover. Although I rarely get migraines, I find that dehydration triggers them (and once beaming a laser onto some quartz clusters, which I could hear somehow), and my body won’t reset itself until I barf when I do. So every few years when it happens, I will do that intentionally because it is the only thing that seems to stop it. I suspect that it is a Central Nervous System thing.
I share an office (so difficult) with a co-worker who processes verbally, who is so nice, and I always feel so rude when I frequently bluntly state, “I’m not hearing you”, because it is not sinking in or being processed by me. I wear ipod headphones often on the street, and that has often worked for me because people do not try to engage me yet it blends in. Of course, it does not block a great deal of sound. I hear music in my head constantly anyway, but the headphones really give me that isolation that I need.
Talking points…jot em down…it helps sometimes. It doen’t mean that you aren’t genuine.
Can the stress of the holiday be a trigger for you? If so, it will pass. Be patient with yourself.
Hi Rachel,
This post made me sad and I realize it is because you are expressing a very familiar feeling for me that I keep hidden under a bunch of positive thinking and other good stuff. The truth is, sometimes our differences are really up there on the surface and it is painful to realize that we haven’t been given the path we perceive as easier.
I was somewhat prepared for this feeling of difference around being autistic in my twenties when I was dealing with internalized homophobia. I thought it would be so much easier to be heterosexual, because I would just fit into society better and wouldn’t have to deal with all the “feeling so different” in a society built around what I perceived to be heterosexual values. Though I joined a gay rights organization and got involved with stuff, I still felt unhappy inside. I have come to accept and honour that part of who I am now, but it took me a while. The autism is newer (I was diagnosed a year-and-a-half ago) and accepting it seems a little easier, maybe because of my past practice dealing with difference, but it is essentially the same process.
The truth is, if the neighbours don’t accept you for who you are, are they really worth getting to know, or even worrying about? I know that is easy to say. A lot of times it is very difficult for me to even leave my apartment, because I am so worried about other peoples’ possible reactions to my coping strategies.
Take care of yourself.
This may be an unhelpful, off-the-wall suggestion, but have you ever considered some sort of text-to-speech device? I’ve read accounts by others on the spectrum who have really found that it works for them–it seems to allow autistic adults to socialize and converse at a pace that is comfortable for them and helps to ward off overload.
Wow, such insightful responses. And I can’t believe that someone other than me remembers “Lost in Space”! It was the first hour-long TV show, and I remember watching it with my mother and brother with great excitement. And that robot was definitely hand flapping.
Like Alison, I thought I’d dealt with all this feeling different stuff before–in my case, because I’m Jewish. I had to overcome a lot of internalized anti-Semitism (from the world at large) and anti-religious feeling (from my parents), and I also went through a period in which I insisted on being very visibly Jewish. At various times, I’ve worn a yarmulke all the time, in the house and out in the world, and for several months also wore tzitzis (ritual fringes) that were clearly visible (i.e. not tucked inside my clothes). I also went through a more traditionally female phase in which I wore long skirts and kept my head covered with a scarf. I did it very consciously to express my culture and my difference. (Now I just wear whatever I want!)
But being autistic is different. I can’t turn off its more visible expressions (stimming, wearing a headset, averting my eyes) without doing major damage to my body and psyche. Taking a yarmulke or a scarf on or off is easy. They’re just outward expressions of me. They’re not an intrinsic part of my nervous system.
Rina: I have considered a text-to-speech device, but that still entails the necessity of listening to a verbal response, so it only takes care of half the problem.
I’m currently working with a state agency for disabled Vermonters and will be meeting at some point with a guy who specializes in assistive communication devices. He may come up with solutions I haven’t thought of. At this point, if there were Internet access where I volunteer, I would bring in a couple of Netbooks and use the chat feature of Skype to communicate, but there’s no Internet connection. I’ve considered an iPhone, but the keypad is so teeny that writing with a pencil would be faster.
Wow ~ so I’m not the only one.