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?

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.