05 July, 2013

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.


  1. I believe you might have said somewhere you have Rosacea (sp?). I think that can be cured for many people with a specific anitibiotic, taken for a short period (2 weeks?) when you have a flare-up. My husband has it.

    Ditto acne - if that's it: a specific antibiotic for a short time when there's a flareup.

    For paychecks, go for what Richard is recommending (work one job, get paid better) BUT have them direct deposit to your bank account. (Don't deal with physical checks.)

    Then, for taxes, set up quarterly tax payments automatically to go from your bank account to the IRS for 1/4 of approximately what you think your taxes will be.

    That way you won't get hit with a big tax bill when you file your taxes - and might get a refund.

    If you solve one or two problems at a time, you will be able to relax more.

    My neighbor talked me into doing the online banking bit - it is super easy for you younger folk who are used to computers - and you can see your banking information - and pay bills - any time, instead of dealing with a monthly statement.

    One or two things at a time - that might help!

    Please let me know if I'm being annoying instead of helpful - the last thing you need is more annoying.

    1. I wouldn't personally call it annoying; however it might not be especially useful. I am obviously not Amanda Forest Vivian, but the problem by my understanding isn't really the individual things she is dealing with. It's parsing the various day to day stuff into a long term plan, not getting set back when something unexpected happens, and generally dealing with "small things" as they come up. "One or two things at a time" doesn't necessarily work because what is commonly designated as "one thing" is a multitude of related tasks, so things can stack up faster than one can deal with.

      She can of course correct me if I am wrong, but this is my interpretation as someone who has similar cognitive problems to what is being described in this post. The individual problems are all things I could find a solution for, but actually implementing them could be much harder.

    2. I agree - in general - each of us is different, and what works for one might not work for another.

      I have rather severe brain fog with my CFS - and get very short chunks of usable time in my day - so I find that if I react to the millions of problems, NONE of them get done.

      But it I focus on one - the most important at that moment - maybe I'll get something done.

      BTW, a study at Stanford proved that multitasking is INefficient - what is really happening is that tasks get rolled in and out of the brain, and less work actually gets done, when people are switching around on devices.


      Please disregard anything that doesn't work FOR YOU.

    3. I'm basically feeling what Pancho said but thank you for your kindness. it's probably confusing when I write about personal things on this blog but then react badly when someone gives me advice--I'm going to try to write another post or comment explaining what I intend to communicate when I write about personal stuff.

      I understand you are cognitively disabled also and aren't talking to me from the perspective of someone who doesn't get disability, which I appreciate.

    4. To me it's not a multi-tasking versus no multi-tasking thing. I can't multi task much in any situation (although sometimes I have trouble keeping track of what I'm supposed to be doing and get "triggered" by items that imply a task). Single tasking just doesn't necessarily work either, which is when I get into situations where important things aren't getting done. Being able to make a choice on a single/multi task dualism requires the cognitive ability to effectively work within one of the choices.

      Agreed that different things work for different people, though, and it's great if anyone reading is helped by your suggestions.

  2. That's a very polite no thanks - and doesn't bother me a bit. Just wish I was close enough (I'm in NJ) to actually offer help.

    It's just that young adults have so many things to figure out - it would be nice to do some of the things I did with my kids (help with paperwork, and first taxes, and such) if I could.