Time gets scarier

I watch a lot of TV and by the standards of TV I have a really good life.  I have perfect friends and a job I love, and I even have someone I’m in love with.  These are supposed to be the important things.  Fiction doesn’t concern itself with getting dressed, eating regular meals, and showering, except incidentally.  These things are supposed to be so boring that they blend into the background but these supposedly boring and insignificant things are making my life suck.

When I was growing up all I wanted was to be grown up and live on my own.  Mostly I wanted to be out of school so I could be in places I chose and do things I chose, and especially so that I could meet people I could actually date and be friends with.  When I was 17 I would struggle to make a list of anyone I considered a friend even slightly.  Now I can’t imagine worrying about that, but I’m constantly nostalgic for being 17 because I didn’t have to pay attention to where I was, what I was going to eat, or what I was going to do.  When I was 13 I couldn’t make it through the day without being told I was an ugly freak who should kill myself, but I had unlimited mental freedom to read books, write stories and songs, and experience everything as intensely as I wanted.  Now that I get to have friends and not be bullied, I spend half my time wondering if it's worth it.

For one thing, I don’t read or write much anymore and I read much slower than I used to.  I think it’s because I have to keep myself a little detached from everything.  If I do anything too much, I might forget to sleep, eat, wake up, go to work, etc.

My relaxation activity (which takes up more or less of the day depending on how stressed I am, but always takes up a lot of the day) is to sit propped up with pillows, reading multiple things on the Internet at the same time, sometimes gchatting with people, sometimes making short tumblr posts, and sometimes watching TV in 2- or 3- minute intervals.  I usually do this with an online timer open so I know how much time is passing (even if I’m not planning on stopping in an hour it’s still good to know that an hour has passed).  I eat a lot of my meals during this and in the morning I usually get dressed and put on makeup without getting off the computer.

It might seem like it would be more relaxing to sit and read a book but it actually would be stressful because I could lose track of time.  Once when I was little I remember crying because I accidentally read all day and it scared me that so much time could pass without me knowing it.  But at least back then someone would find me if this happened.  My housemates are nice but keeping track of me isn’t their job.  Anna’s parents would call me if I didn’t come to work but by then I would already have done something wrong.

When I clean, do dishes, or do anything that can’t be done while sitting at the computer, I watch TV or listen to a podcast.  Otherwise I won’t be able to focus because I’ll be afraid of spacing out.  If I watch TV or movies with other people, I get stressed if I don’t do something else at the same time.  But it makes everyone feel weird if I’m on the Internet so I try to eat, drink, or play handheld video games.

I stopped driving because I was a bad driver and I was suicidal then, which was a bad combination.  But I’d be hard pressed to start again even if I could learn to be an okay driver, which I admit is possible.  Riding the bus or train is the only time I can actually read a book or write something important or just experience what's going on around me or in my head.  The bus always goes the same places and I don’t need to work hard to know when the ride is over because I ride it every day.

(Cross country Greyhound trips are a spiritual level experience for me because the ride doesn’t end and I don’t have to focus on anything practical for days.  Even if I arrive dirty, hungry, sick, and tired, I’ve still gotten to space completely, for long enough that I stop even feeling nervous about it.  Sometimes during the Greyhound ride I end up figuring out something or writing something I've been wanting to do forever.)

But I’m not intending to say it’s hard to work, do laundry, eat regular meals, sleep, shower, get dressed, and put on makeup.  A lot of people can’t do those things without parents or staff and here I am doing them consistently, so by definition it’s not that hard for me.  It happens.

What doesn’t happen is all the less immediate things.  For example, to cash my paychecks I can either get up early on a work day or go to the bank on one of my one or two days off a week.  I mean to do this almost every day but it usually takes at least a few weeks.  Since I don’t cash my paychecks very often, I lose them sometimes.  In theory I can get them sent to me again if I talk to someone and explain I lost them, but this isn’t something I even put on a to-do list because it’s not likely that I’ll do it and it’s a lot less immediate than other things on the list.  Right now there is at least $100-300 that I should have been paid and could get but it’s not realistic.

Anna’s dad Richard coached me through getting about $800 when the agency that manages Anna’s services sent my paychecks to the wrong address several times.  $800 is enough money that I can’t pretend it just isn’t important, but there’s no way I would have been able to get it without help so I guess I would have ended up trying to pretend that I have more important things to do than get an entire month's rent.

Richard is also helping me sign up for the San Francisco healthcare program.  Even though it is available to everyone in San Francisco, I wouldn’t have signed up on my own.  (Wouldn’t have been able to?  Just didn’t want to becaue healthcare is stupid anyway?)  It isn’t hard but it took several months because he had to walk me through everything and he is a human who has to keep track of his problems and 50% of Anna's problems, and is also the kind of person who helps multiple unrelated people with their problems.  If I could just take care of my entire self, I could have signed up months ago.

Except it’s just a waste of time because when I lived in Cincinnati I had really good benefits but I never went to the doctor or even learned how to use my benefits card.  Six months ago when I was visiting my parents, my mom decided to organize and pay for me to go the dentist.  The dentist found 7 cavities (all hidden on the inside of my teeth, which is a great metaphor for my toxic personality.)

The dentist also noticed that I have a skin condition covering most of my face and ears.  I tried to get her to stop touching my face by saying, "It's okay, I just have messed up skin."

"Don't say that!" she admonished me.  "It looks like contact dermatitis."  (It doesn't, because it's not.)  "You should go to a dermatologist.  You're a beautiful young girl, you shouldn't just be saying you have messed up skin."

So let’s pretend I have a health plan that covers this and I get myself together enough to make an appointment with a dermatologist and I get myself together to go to the appointment and I don’t cry when I have to talk about the fact that my face looks like a mask, and I can afford all the medicine and it’s going to work if I use it.  Am I going to be able to deal with adding a bunch more things I need to do every day?  Am I going to use it if it has side effects that require me to put drinking huge amounts of water at the top of my list of immediate needs? What if it makes my face feel weird and I have to spend time getting used to it several times a day? Fuck that.  Then I cannot go to work, get dressed, shower, do laundry, eat, etc.

The agency that manages Anna’s services has yelled at me and made me cry for not being able to talk on the phone by myself.  Richard had some plans for me to not be involved with them anymore, and he recently found out that the regional center could pay me directly and I’d make more money, but I’d have to deal with all the taxes that your employer usually figures out for you.

As soon as he unveiled the new information, I started thinking too hard to talk.  Eventually I said: “I wonder if I would make enough to quit my second job and then I could use the extra day in the week to figure out the taxes."

“You wouldn't have to do that.  It’s simple,” he said and continued basically being kind and suggesting how I could find someone to help me with taxes.  “This could be really good.  You could make more money and you could quit your second job and have the day off to play with dogs.”  I'm trying to start volunteering at a dog shelter.  Did I mention he is being super nice and has no reason to help me with the 400 things he's helped me with?

But the whole idea of the taxes made me get wary because it seemed like too much work, and then I got sort of shaky-sad, which is a feeling I usually only have when I look at my skin.  Be careful, be careful, it's not realistic, it's not realistic, be careful.

Conventional vs. unconventional timers and problems with people in the household

So a big issue with timers is how other people are going to feel about them, especially people you live with. I guess I'm assuming a reader who is making some decisions about how to conduct their life and possibly having to explain some things about their disability to roommates or family members.

If you use a conventional timer (which I guess regular people mostly use for cooking?) then it's confusing to people because you're obviously using it for things that don't have to do with cooking and sometimes it seems like you're not using it for anything at all. Also, it can be a problem because a lot of people find the sound of a timer going off to be really unpleasant and/or stressful and then it's an issue of being considerate to the people you live with.

Actually, even unconventional timers like TV shows and singing are things that you can have to explain. If your family is really fussy about your disability, they might get upset because they perceive watching TV or listening to music as a leisure activity and they think that you should be doing something constructive. Even if you are doing something constructive and you try to explain that TV and music are making it possible for you to do it, they might just think it's an excuse.

Something that I find frustrating is that even if people are not annoyed with me for watching TV a lot, they don't understand my relationship to TV. Sorry that just sounded ridiculous, but what I mean is that people think I'm just really into watching TV shows and I want to sit down and watch TV shows with them. To me structuring my time around watching TV, instead of structuring TV around what I want to get done, is a waste of time, energy, and episodes. It can be fun sometimes just like any waste of time and energy can be fun, but it's a completely different activity from my usual TV watching (TV as timer).

Even if I do sit down and watch TV with someone (which is fine as a leisure activity and sometimes I'm prepared to do leisure activities), I feel tense because I'm not used to just watching TV and doing nothing else, so I like to eat, play games, or be on the computer at the same time. Obviously some people don't like this much so I try to make my secondary activity be eating or drinking because it bothers people less. Also, if I get drunk enough, dealing with being drunk can be the secondary activity.

I guess it's kind of a stupid thing for me to take personally but it can be hard for me to know that other people perceive me as doing leisure activities all the time when I am literally working hard at something right then.

Also there's the fact that people are a bit less likely to put up with something that mildly inconveniences or annoys them if they think you're doing a leisure activity than if they think of it as an actual support that you need. Some disabled people might think it's good if singing in the shower helps a person take showers properly, because it doesn't come off as different from other people. But it is also hard if someone says it's annoying to hear you singing in the shower, and they don't understand that by saying that they are making it hard for you to take care of your hygiene which affects your quality of life.

Also if you don't understand about timers

Something that I find tough is that I don't really know how to describe the daily effects of my disability to people and the only way I feel like I can do it is by just showing people or telling people about things that I need to do to function.

The problem is, it seems like a lot of people can't extrapolate what's going on from what I show them, and some people's only reaction to me saying, "See, I have to do this to do this" is to encourage me to do something that is a more common way of dealing with things. I wish people could try to understand what I'm like by seeing that I have to write things on my hands and my computer so I can always see them, but it seems like most people just look at this strategy and see a problem and try to tell me that I should write stuff in a special book (which it would be harder for me to use because it would take more memory and energy to check what it says).

Writing on myself particularly is something that people have always been kind of distressed about and the only reason I can see for this is a bunch of negative associations that are clearly associated with disability. People usually see it as something that looks bad because it clearly indicates that someone has thinking and memory problems, but when I was growing up I was also told that I shouldn't do it because it would imply that I'm the kind of person who would self injure.

It's not really an issue for me that someone might think I have problems with my memory or self-injury because those things are true and I don't think that indicates anything bad about me.

But anyway, I just really wish that people could understand what's wrong with me just by looking at things I have to do, but if I can't even explain to other people what's wrong with me then I guess it's not really fair to expect them to figure it out when I can't.

Timer Corner

Beep beep beep, it's time for...

TIMER CORNER!



So, if you have a disability, you might find that you need to use a timer. If you're wondering why a timer would help someone function better, congratulations! You don't have to think about some things that are a big part of my life.

(Yeah I should chill out and be nicer but sometimes I get tired of feeling like I can't talk about things like timers because they are too weird.)

I liked to use timers when I was little just because I would time myself while I was singing. My family had a classy timer with three different displays--one would count the time something was taking, one was a typical timer that counts down, and one was a clock. There wasn't really any reason for me to time myself singing but I guess even at that age I could tell that I was going to have a long love affair with timers and I liked being around them.

When I was in fifth grade I spent about half a year being pretty organized and independent about getting ready in the morning. Until then, I would always have trouble getting ready because I would start thinking, spacing out, or reading books in the middle of doing things. But in fifth grade, I decided to start getting up at a certain time and turned my morning routine into a race where I was supposed to take a certain amount of minutes to do every piece of the routine. There was a natural reward in that if I finished everything fast enough, I'd have a bunch of time to watch TV and eat before school. I did pretty well with this for the rest of fifth grade, but in middle school I had to catch the bus earlier so the motivation to work that hard wasn't there.

In the last two years of high school I started getting a bit better at these things again because I would use music and timers to do all kinds of things like getting ready for school, taking showers, and studying. At that point in my life I really didn't like to think of myself as Autistic or disabled so I didn't really think about what I was doing, and I didn't know that other disabled people used timers. When I went to college and started living in a dorm with a roommate, I stopped using timers and music as much, because I had to do so many activities of daily living with someone else in the room, and I felt self conscious about it. Obviously, I wasn't able to do things as well or quickly once I decreased my use of timers. But I never totally stopped using timers and when I would play guitar, I really enjoyed timing myself and playing my songs in 5- or 10-minute intervals.

About the time I started writing this blog, when I was 20, I started using TV shows in a similar way to the way I use timers and music. In the last two years of college, I used timers and timer equivalents more than in the first two years, and the year after college I probably used them more than I ever had since I was in high school. I wouldn't say I use any of my timers or timer equivalents as effectively as I should, but I'm continuing to develop new ways to use them and learning more about them, and so I'm going to write some timer reviews, which will take into account what something is good for and how well it fits into my life. These are the things on my list so far:

1. West Bend timers
2. Update International timers
3. online-stopwatch.com
4. alarms on my phone
5. listening to CDs
6. YouTube videos
7. TV shows
8. singing
9. trains and buses
10. people