31 August, 2010

Max is a miracle

I have an imaginary friend named Max. He resembles me and some of my friends, but not as much as I would like. When Max was growing up there was concern because he was incredibly disorganized and spacey. He spent hours on the Internet. He zoned out when people were talking to him. He got confused about coming up with plans and taking initiative.

But look at Max now! He goes to college and gets good grades. Or he's done with college and has a pretty good full-time job. He lives on his own. He does all these things that his parents and teachers thought he would never be able to do. And it's not because he's "recovered," because he still sucks at all the same things.

I know that when I say Max does things that are really hard for him, it sounds like I'm creating a supercrip narrative about how he is just wearing himself down to the bone doing difficult things, and you should too. And some people who know Max do talk about him that way.

But Max has a secret: he skips to the end or slides into home plate at the last minute or wrangles things out of people so that he can get stuff done despite having no executive function to speak of.

The mainstream reaction to this would be to say that Max is a bad person and if he was a good person he would try harder to get things done on time. However, he tries really fucking hard. That's what everyone with executive function problems does, because no one accommodates them because there's been very little study of them so most people don't realize they're even a part of autism, and it's hard enough to get accommodated for things everyone knows about. Seriously. No one wants to be at a point where executive dysfunction is affecting their life. Max, and I, and everyone, are working as hard as we can. It's not enough.

You have to cheat. Ask for as many extensions on papers as you possibly can. Pretend your computer is broken. Use your charm if you have any. If you're going to cry, don't wait until you're out of the room--do it where the people in power can see you. Eat the same food every day if you can't think of anything else to make. Put other things ahead of taking a shower, even if your mom said you have to take a shower every two days. Sometimes people won't notice you're cheating but even if they do and are annoyed you might still get by.

My mom goes to workshops for people with ASD and then gives me the really long printouts that go along with them. The printouts tell me to sit down and make a list of everything I have to do. When I am anxious, as I have been this year, it's hard to think about these things so I hold on to the printouts out of guilt but don't actually read them. Then my mom finds them and gets upset that I haven't read them and says that I'm not ready to live on my own.

But I am ready to live on my own. Badly. Just like I can hold down a full-time job. Badly. Just like I am getting my homework done. Badly. And I forget to balance my checkbook, which none of my non-disabled friends do because you can get it online, and my mom says, "Well it's different for you because they would be able to do it if they needed to, but you wouldn't, so you have to do it." Theoretically I understand this is true, but my checkbook remains unbalanced.

Which is bad. And I feel bad. I do! At this rate I'll never be able to go to college. But I do go to college. At this rate I'll never be able to have any friends. But I do have friends. I just don't do everything right with them all the time.

This blog is a vice. It is something I have used in the past to avoid doing work or looking after myself. Sometimes trying to force myself to do work or look after myself makes me anxious or upset. So I've also been using this blog to avoid self-injury, in a roundabout way. I'm Somewhere Else is a bad, bad business. However, when I forget its context I feel kind of proud. To someone who doesn't know me, maybe it seems like an accomplishment.

For people whose lives are controlled by executive dysfunction, I firmly believe the difference between getting stuff done and not getting stuff done is not caring about doing things right. You cannot always make a list all the time and be early for everything. You just can't. Hopefully you're good-looking or funny or you remind someone of their niece. Exploit all opportunities. Do not do what people who are not disabled tell you to do (unless you want to, of course).

All too often I find myself waiting for the day when I can do shit properly, which more or less amounts to waiting until I'm not disabled anymore. Then I can feel good enough to deserve everything I want. Well my cure is slow in arriving, so I'm just going to do everything I want now, if that's okay with you.

15 comments:

  1. Thank you. Two days into the semester and I'm in survival mode already -- I needed to hear this.

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  2. Oh wow. I've had problems with being spacey disorganized all my life, but just assumed it was a personal failing.

    I was always told to make lists and schedules but my problem with those is that I like being spontaneous enough to never want to do something just because it's written down on a piece of paper somewhere. Which means I'm a bad person for not wanting to solve my problems, or something.

    I don't know, where do youI'M SOMEWHERE ELSE: Max is a miracle draw the line between just poor character, laziness, and having an executive function problem? I mean, how do you tell the difference? I'm not wondering about you, I'm wondering about me.

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  3. Dammit. My last comment got all messed up because I'm not used to this computer and I can't seem to delete it. I was asking where do you draw the line between laziness, or bad character, and executive dysfunction? I'm not asking because I think you're bad or a slacker or anything, I'm asking because I'm trying to figure out if I'm just a slacker or if I have a real problem.

    Thanks.

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  4. Maybe making a list of things to do could help some people, but I suspect in my case it would just make me feel massively guilty about not doing those things (and thus even less likely to actually get them done).

    I like what you're saying about giving yourself permission to "cheat." It's better to succeed in a non-ideal way than to just give up because the ideal way isn't feasible.

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  5. it's okay I got it. I wish people called me "youI'M SOMEWHERE ELSE Max is a miracle" more often.

    the thing is I don't really know and that's what makes it such a difficult problem to have. Because you usually feel like you are just being lazy/an asshole and that's what other people think too. I'll try to post a better comment later maybe, but it just is really fuzzy. I mean, I end up in situations where I'm super anxious and exhausted and depressed and I feel like I have no energy left for anything because I'm always trying to get things done, but I still am not getting enough done. That's what I would call executive dysfunction. I feel like you can at least try to define disability by asking: when I try to make it go away, does it go away?

    Then you can start second-guessing yourself and saying "what if I'm not trying hard enough because I'm just a bad person??" but, you know, you probably are trying hard because who would want to have these kinds of problems?

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  6. I just looked up executive function on wikipedia and found this:

    http://en.wikipedia.org/wiki/Executive_function#Experimental_evidence

    and then this which was really helpful:

    http://en.wikipedia.org/wiki/Dysexecutive_syndrome#Dysexecutive_syndrome

    in this case I guess it comes from a brain injury but it seems like a similar set of stuff.

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  7. That's okay. Thanks for trying, anyway.

    I suppose if you're not doing it on purpose, then it means you're not an asshole. I'm going to run with that and stick with it.

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  8. Oh boy, I deal with this from my mom all the time. She gives me nothing but crap whenever I have a hard time keeping my college information together, and for the umteenth time is complaining how I do not pay attention to details! She is the last person I would ask for help, because all she does is criticize me and tell me that my life is a hundred times easier than hers, so I have no excuse to do things the way I do. I swear, I extremely eager to leave for college so that I can live with people my own age and have not forgotten what it was like to be a teenager. I hope to even start a club for auties.

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  9. Amanda, I know exactly what you mean about working all the time but not getting enough done. In college I read pages and pages of articles and books to figure out how to write a paper on time with executive dysfunction, but it didn't work. It wasn't until library school that, under threat of getting kicked out, I finally developed a Method For Not Failing and Being a Bad Person:
    1. Medication.
    2. Disability office helping me explain to professors that I might need paper extensions in times of crisis.
    3. Sitting in a large, empty open area, like a dorm living room or basement lounge at 1am, to help me work.
    I wish I knew of something that worked for everyone, but this is just what worked for me.

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  10. I forget to balance my checkbook, which none of my non-disabled friends do because you can get it online, and my mom says, "Well it's different for you because they would be able to do it if they needed to, but you wouldn't, so you have to do it." Theoretically I understand this is true, but my checkbook remains unbalanced.

    Bullshit. I love this post, but sorry Amanda's mom, this line pisses me off. You DON'T have to do it. I don't do it. I rarely write checks, I use my debit card in person and online, and transactions appear immediately. If I do write a big check, that's ONE transaction that I have to remember to check to see if it's cleared before I trust my balance. No ... online banking is a legitimate tool made for people like us. You can let this one go. JMHO.

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  11. I know this is an old post but I needed it right now. I'm in college and struggling a lot, I'm nearly out of spoons this week and this post gave me a few more spoons. Thanks you've saved me a lot of pain.

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  13. Hello. I, too, come from Tumblr, and I cannot express how much your writing means to me. I have long struggled with EFD from a traumatic brain injury. As someone who was exacting, not being so was difficult and has created a life of anxiety. I am just coming out of that dark period and have started to undo those bad habits that I've developed. I have learned that lesson too - that I can't do everything perfectly - and I am so relieved to hear that someone else has been in a similar boat.

    Do you mind if I link and reference you as I write about my own struggles with TBI? Thanks.

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    1. of course you can link it, thanks for your feelings

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