Monday, January 3, 2011

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?


  1. It's interesting to read about peoples' different executive function difficulties. Mine aren't the same as yours; I think they're more like what an ADD person experiences. Like I don't really forget the steps to how to do something, I just space out in the middle of it and get distracted by something shiny. And then I get sidetracked by another project...etc.

    I'm also trying to figure out the problem of why it's so hard for me to get organized and thus have my stuff spilling out everywhere. I think it's hard for me to do tasks that involve making lots of little decisions, what I call "microdecisions."

  2. I'm curious about the microdecisions. Like, what is an example of a series of microdecisisons?

    I know what you mean about spacing out, sidetracking, etc. Sometimes I am doing something, remember something else I had to do, start doing that but then think of something else I want to do, completely forgetting the first two things. So I definitely have that experience, but not as often as the task sequencing anxiety thing.

  3. Okay, the microdecision thing is like when you're trying to organize your living room. First you have to decide which part you're tackle first. Then you have to decide what you want to keep and what you want to get rid of. Then for the stuff you want to get rid of, you have to decide if it's trash or something you can give away. Then you have to figure *how* to give it away: will consignment store take it, will Goodwill? Or should you do Freecycle? Then you have to decide on the next thing.

    Oh man. My brain hurts just thinking about it. I hope that helps.

  4. you are perfect
    thank you for writing stuff.

    (my friend Noah is going to be my prosthetic brain part tomorrow and help me get my academic incomplete done. I even explained the term to him, and he signed a contract. it's just really hard for me to trust anyone to be this for me, even though I can't really do it myself.)

  5. No you!
    Thanks for reading the stuff that I write.

    Prosthetic brain part contracts? Oh my god I'm so excited. I really hope it works out for you. I know what you mean about it being hard to trust people for this stuff. I'm trying to learn to do some of it myself because that's what People Are Supposed To Do, but the only way to do it so far is to like mentally jerk myself around, and that just feels horrible.

    So basically, if Noah works for you, I think that's super cool.