You are also my brain: adventures in (in)(ter)dependent living

I’m at home right now and thinking, as I always do when I’m at home, about my brain.

I use the term “prosthetic brain parts” to refer to any way of externalizing a function which my brain is supposed to do but doesn’t. For example, organization. It’s hard for me to keep even really basic stuff organized, hence my flow chart for leaving the room. (I’m planning a sequel soon which will tell me how to go to bed, because when I stay up too late and get too tired it becomes very difficult for me to remember how to do that.) Other prosthetic brain parts include timers and alarms, which help remind me to transition between activities.

But people can also be prosthetic brain parts. This is the most crucial difference between home and college, and it’s why I’m finding (semi-) independent living at college so difficult. For example, here’s how my executive dysfunction affects my eating, at home and then at college:

At home, Dad generally yells “Come and get it!” after he has finished cooking dinner. This is the first cue which tells me I should get up and go into the kitchen. If I fail to respond to this, someone will call again: “Zoe! Dinner!” This is usually enough to get me to the table. If I am still stuck, all I have to do is hold my hand up and someone will help me to my feet. My girlfriend is visiting with us right now; if she sees that I am stuck, she will call out helpful instructions (“Put your feet on the floor. Now stand up.”).

At college, I don’t forget to eat, as such, but I do forget all the steps involved in getting food (as I forget the steps involved in most things). If I get stuck along the way, no one will come unstick me – I have to unstick myself. The anxiety and effort involved in keeping the steps straight and keeping myself on task can lead me to skip or delay a meal rather than make myself go out and get one. Or I might do dubious things like eat a “meal” of chips and candy from the vending machine. Or I might try to reduce the steps by eating at a restaurant or ordering food delivered, which gives my brain a break but strains my wallet.

Basically: at home there’s no chance of not eating the meal. No matter what happens, I will eat. At college, there is a chance that I will intend to eat and then fail. And just to add another dimension of difficulty to the situation, the possibility of failure and the uncertain outcome of my efforts heighten my anxiety. Remember, I’m already feeling anxiety because of forgetting the steps and having to unstick myself. The more anxiety I feel, the more difficult it is for me to perform advanced brain functions like unsticking myself, and thus the failure becomes cyclical.

There are a lot of scenarios that work out like this. At home, If I’ve been stuck in the bathroom, sitting in the sink not doing anything when I should be getting dressed, someone will knock on the door and ask me if I’m stuck. I can even ask someone to hang out in the bathroom while I’m brushing my teeth and putting on my clothes, in case I get stuck again. At school, I have to be the one to unstick myself. Following simple instructions is easy; unsticking myself is very hard.

At school, during periods of stress, I start to get a sense that I am jerking myself through my life by brute force alone. Every step feels deliberate and requires an intense effort. At home, I no longer have to act as my own drill sergeant just to put on a pair of shoes. I don’t have to watch myself so vigilantly, because other people are there who will help me out.

I feel as though I’m starting to repeat myself, but this is hard to explain, and I want to explain it perfectly. Home is easy. College is hard. This is why.

Now what do I do about it?

Guilt-allaying things people tell me over the internet

So I think I've mentioned before that I deal with a lot of guilt due to the amount of late work I turn in in my classes, or the fact that I can't do all my reading -- various lapses of academic performance. But lately people have been saying awesome things, on chat or in emails or in blog posts that I read, that help me put the guilt aside for a little bit. I save these communications, and I take them out and look at them later, and I remind myself that people love me and I am okay.


"You are a very good student. However. There are a lot of ableist expectations for what being a very good student means. I know you have had a tremendous amount of your self worth wrapped up in your academic performance since FOREVER. But you might want to consider whether you want to continue basing your self worth on how well you adhere to standards which are not designed for Zoes."
-Asher

“You and I both space out when we should be working on things. The difference is I meet deadlines more often. The difference is prob because I can pull all-nighters and you stop functioning. It’s not me having better discipline at all. It’s me having more energy.”
-My girlfriend

"I'm so proud of you... the more I learn about ASD the more I admire and respect how you've gone about building your life."
-My dad

"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."
-Amanda, in an amazing post about executive dysfunction

Better Living Through Flowcharts

Here’s a moment from Glee that stuck with me for a long time. Some of the main characters are talking in the choir room, and they look over and see that Brittany, the show’s “dumb blond,” has been sitting there the whole time. When they ask her what she’s doing there, she says that she took some cold medicine and fell asleep, and when she woke up, “I forgot how to leave.” Cue laughter as viewers think to themselves, “Brittany’s so dumb, she forgets how to leave a room.”

I didn’t laugh when I saw this, because this is actually something that I regularly do.

This is a bit difficult to explain. The concept of how to leave a room is something that I understand at all times, but within that concept there are tiny, practical steps that I have to keep lined up in my head. If I don’t have to take anything with me, the steps might simply be “stand up, walk to door, open door.” (This can create its own set of problems if I’m having difficulty making my body respond to the commands of my brain, which does occasionally happen.) But if I do have to take things with me, I have to organize and gather my things before I can leave. If I have to get dressed, or even leave and get showered and come back and get dressed, and leave and brush my teeth and come back and then gather my things – that’s a lot of steps.

Here’s what happens: I’m in my room in the morning, and I’m tired because I haven’t gotten enough sleep, and I can’t get all the steps lined up right. Maybe I’ve just removed my pajama top and I can’t remember what to do. Some part of my brain knows that the next step is to put on a bathrobe before proceeding to the shower, but I’m having trouble accessing that information. In this foggy state, I look around the room and I see my laptop. Aha! I can check all my favorite blogs! Ten or twenty minutes later, I realize that my class starts pretty soon and I haven’t even put my bathrobe on.

That’s pretty much a typical morning for me. Under more adverse circumstances, the problem gets worse. One memorable Saturday morning last semester, I awoke to pounding music echoing through my ceiling. That morning, the process of showering, dressing, and leaving took four hours. That’s four hours spent mostly in my room, crying in frustration because the noise was so awful and I wanted more than anything to go away, but I didn’t know how.

I was telling my girlfriend about the problem of getting stuck in my room, and she came up with an ingenious solution. (By the way, guys, this is why college is awesome: when I tell my friends about stuff like this, they are supportive and even come up with ideas instead of, say, laughing nervously or calling me a freak.) She proposed that if I made myself a list of the steps necessary to exit the room, I could reference this list whenever I was confused.

Because I am a giant nerd, the proposed list ended up as a flowchart:


[Image: a hand-drawn flow chart which gives the viewer detailed instructions in how to leave the room, with separate paths for showering and not showering, and later two different ways to pack for going out.]

This is currently taped to the door of my closet and I’ve referenced it several times. Hopefully it will help me keep on track in the mornings and get out of the room in an emergency. I’m very happy with it. I think part of learning to live more independently is finding ways to make my life easier.

Limitations

I had great plans for this year.

Last semester, I started out on a bad note, feeling stuck and overwhelmed and not getting any of my readings done. This year, I decided I would start out the semester more organized. I would plan better, and overcome my anxiety so that I could be prepared for my classes. Instead of feeling disconnected from the subjects I was studying, I would do all my readings and feel fully engaged. I would emerge knowledgeable and triumphant. It was going to be amazing.

So I started my semester with the goal of preparing for class. And for maybe two glorious weeks, I came to all my classes with all or most of the reading done, knowing exactly what we were going to be talking about and prepared to make insightful comments. Finally, I felt like a good student, a good person.

I did some of this by being more organized and planning better, and this was definitely a good thing. But ultimately, here is where the extra reading time was coming out of:

- down time, relaxing by myself
- social time with friends
- time spent doing laundry and unpacking
- sleep

As a result of this, the wonderful feeling of being a good student came with some unpleasant side effects. I felt unhappy, and sort of purposeless, with so much time spent cramming for class. I got more fatigued, until last Thursday I fell asleep in the middle of a really fascinating lecture. And I felt so mentally tired that I spent most of the weekend lying on my bed listening to an audiobook, panicking about getting my work done but somehow unable to attend to it. Halfway through Saturday I decided that if I wasn’t going to do work, I should at least get up and clean my room. I then continued to lie on my bed, despairing of my ability to do things.

Three weeks into the school year, I successfully burnt myself out.

The lesson learned from this lovely episode is that I can’t do all my reading. I don’t have the time to devote to it, the brainpower to process it all, or the emotional strength to deal a life of academic isolation.

I feel guilty about this – like I’m a bad student, a slacker, a cheater. I’m not the scholar I wanted to be. I also feel sad when I think about what I’m missing. I mean, in one of my history classes we’re studying Nazi Germany, a subject upon which I have spent countless hours perseverating. I want to do this reading, and I’m sad that I can’t.

But at the same time, I feel kind of liberated. I don’t have to walk around haunted by the specter of chapters unread, thinking I’m a failure, convincing myself I really will read those last 50 pages and then falling short. I can admit to myself that I won’t get around to reading those 50 pages, or the introduction to the next history text, or the poem we’ll be looking at in German on Friday. I can go out for dinner with friends, or read blogs, or do my fucking laundry, even if I haven’t done my reading. And I shouldn’t feel guilty about it (though I do). I know that by not finishing my reading, I’m preserving my brain to fight another day.

In Which Everything Seems Pretty Awful

The fall semester has begun and my executive dysfunction is seriously bothering me.

I’m currently being screwed over by my lapse in planning during class registration last semester. At that point, I somehow thought that I could take only one history class in the fall. Upon arriving at school, I remembered that I actually need a major and perhaps I should check up on the major requirements, and I discovered that I’m seriously behind in terms of history coursework. Additionally, I kind of want an education correlate in case I decide to go into special education or a similar field.

This means that I’m scrambling to register for new classes, which takes up a lot of my time, and if I get into new classes I’ll be behind on the readings for those classes, and I’ll have to catch up, which will take up a lot more of my time.

I should have planned for this last semester. I should have known I would need more history classes. I should have signed up to get field work credit for the volunteer work I did over the summer. I shouldn’t be writing this post right now.

I’d forgotten how much work I do at college. I have to work to make myself work. This might sound frivolous and lazy, as though I just can’t muster up the willpower to overcome a hedonistic urge to enjoy myself when I should be working. In fact, if you were to check up on me while I’m attempting to make myself do work, you would find me in distress as I attempt to focus on a task but somehow always end up doing something else. The guilt and anxiety that this produces are problems in their own right, and the worse I feel the harder it is for me to focus. Can you spot a pattern here? If you picked “downward spiral,” you’re correct.

As I write this, I am looking at the pile of clothing that I have yet to fold and put away, the bags I haven’t unpacked, the bookshelf I haven’t assembled. As I write this, I should be doing my German exercises, or reading for my history class. Yet somehow I ended up writing this, almost without noticing that I was beginning to do something counterproductive.

Maybe in a few days things will be sorted out. Maybe I’ll find new classes. Maybe this semester won’t end with gloom and doom and late papers in every class and the academic apocalypse. Maybe I’ll learn to get things done on time. Maybe I’ll get more control of my life. Until then, I’ll be playing catch-up. Again.