Round and round in my bed life

My life is pretty great. Let's talk about it. Okay, it's not the greatest life ever, but there are certain times of the day when I feel really satisfied. Last night I remember taking out my contacts, throwing them away, and reaching for my glasses; and feeling pleasantly surprised at how easy it was to do this. I used to take three hours to get ready in the morning and now I can take less than one hour--and that's not racing against the clock and working super hard to focus on what I'm doing.  I don't even use timers right now.

Around the beginning of last year, the idea developed that I could try to make my activities of daily living easier. I'd give most of the credit to the family I work for.  First of all, my job is so easy and fun that I can focus on things besides hating my life and being afraid of getting fired.  Second of all, Anna's parents are really organized. Of course I've met organized people before, but I was never in the right frame of mind to notice and appreciate it.  This time around, I was.

If I'm looking for pillowcases or paper towels or stacking cups or shoes, I always know where to find them in Anna's house.  Each pair of shoes even always goes in the same compartment in the thing that holds the shoes.  Her long-sleeved and short-sleeved shirts are in different places, and the long-sleeved shirts are divided into patterned and not.  Her hoodies are organized in such a way that you can identify them without unfolding them.  And a lot of things are labeled.

This makes everything more predictable, which is great. I decided that I wanted my living space to be like this, but even more so. Since I run into problems when I have to make decisions, I decided that I would do exactly the same things in exactly the same place when I was doing activities of daily living like getting dressed, putting on makeup, or putting in my contacts.  Over the first year that I was trying to make things easier, I realized that reducing the number of steps was even more important than making things predictable.  I decided to set things up so that I barely had to move to get ready in the morning and get ready for bed at night.  By the way, this might not make sense if you don't read my mush post first.

Right now my schedule is like this:

I wake up in the morning (usually before my alarm). I reach for my phone to see what time it is, and open my computer, which is on a large table next to my bed. I might check tumblr or something, and if I'm thirsty I drink some of the seltzer that I always have in my room. I have a recycling bin next to the bed for all my cans of seltzer. If I'm hungry, I drink a bottle of Ensure or eat a corn tortilla or some crackers, all of which I can reach from my bed.  Then I start up whatever TV show I'm watching right now.  I put in my contacts.  I throw the contact boxes away in the container I use as a trash can.  Then I reach for my backpack, which is at the end of my bed, and take out the Ziploc bag in the left corner pocket, which has all my makeup in it.  I sit on my bed and watch TV as I put my makeup on.  Then I put the Ziploc bag back in my backpack so I'll have makeup if I need it during the day.

My bed has bars which means I can hang a lot of stuff on it.  I usually have some clothes hanging on the end of the bed--all the clothes that have been worn at least once, but are okay to wear again (shirts and leggings=two days, pants=three days, skirts and hoodies=until I do laundry).  The other clothes are in my cubbies, which are next to my bed.  I have everything folded so I can see what it is.  I can just look at all the clothes and decide which ones to wear, and I can even reach my desired articles of clothing without getting out of bed, even though I might have to move to the edge of the bed to do it.

I don't brush my hair so I am now ready to go.  I pack my phone and my computer if I want it, turn off my power strip, and go to the other side of my room where my shoes are.  I put on my shoes.  Then I go in the bathroom, brush my teeth, and leave.

When I get home at night I usually just want to get in bed.  If I have something to do in the house, like put my frozen vegetables in the refrigerator or take out the trash, I look at my watch and promise myself it will take less than fifteen minutes.  After that I go in the bathroom, brush my teeth, and wash my face.  When I get in my room I put down my backpack, turn on the power strip, turn on my lamp, change into pajamas, do my *~Skincare Regimen~*, take out my contacts, and put on my glasses.

Bear in mind it's often like eight o'clock at this point, and I might not turn out the light and go to sleep until midnight.  But I've pretty much always fallen into bed and mushed out as soon as I've gotten home.  The difference is that for a long time I didn't accept that I would do this, so I would lie down with my clothes on and then spend the next few hours trying to get out of bed to brush my teeth and wash my face.  Obviously my mouth was 90% cavities and my skin condition was out of control to the point that I didn't want to wash it even when I had the chance, because touching my skin hurt so much.  Now things are a lot better!  Having a face that doesn't hurt is probably my favorite thing about life right now.

Aside from changing the way I do stuff at home, the most important ADL decision I've made was about what not to do at home, i.e. cooking and eating.  This was a hard decision to come to because I grew up thinking of cooking as something that is part of being independent.  My parents had enough money to go out to eat a lot, so we did, but they would cook at home a lot too.  I felt proud when I learned to cook some simple meals by myself.  Over the first two years after college, I made my own meals the majority of the time and was slowly learning to make more and more things.  I didn't make anything complicated, but I enjoyed the food I made.

But even though this sounds like a nice progression to independence, I realized that it wasn't benefiting me.  The problem isn't really the time and energy involved in cooking, although that is usually a lot more time and energy from me than it would be from someone else making the same thing.  It does take time but it's sort of fun and I guess it often takes me the same amount of time to travel to my favorite diner....where I'm writing this right now!!! I love you Lucky Penny!!

I bet you would never have guessed I don't brush my hair, right.

Anyway, sorry for the derailment but the main problem is actually dishes.  I don't think anyone finds dishes fun and easy to do, but for me because eating is a more relaxed, mushy activity, it's really hard to go from eating to doing the dishes.  If I eat by myself in my room instead of with roommates, then I get even mushier and end up falling asleep surrounded by an army of dirty dishes.

It is fun to imagine a fantastical universe where some amount of planning or prioritizing could lead me to do all my dishes all the time, but I don't think that is realistic, at least not at this point, and I feel like it's contributed to me being unhappy when I live in a gross, cluttered house full of ants (which happened in the first place I lived after college) or my roommate is always justifiably upset with me for not doing the dishes (which happened in the second place).

It was a major load off my mind when I started going out to eat by myself.  I had almost never done this before, and it can feel like a weird thing to do at first, but it's super great.  Before I started going out to eat I would often get takeout when I felt like cooking was too hard, but this wasn't a good solution because I still had dishes.  When I go out to eat I don't have to focus on anything before eating (getting groceries, cooking, etc.) or cleaning up anything after.  There are clear delineations for when the meal starts and ends.

Even more importantly, it replaces something that was a source of problems with something that makes me really happy.  I love going to diners and cafés, not just because I can eat something that would probably be too hard for me to make myself, but because I like the experience of being there.  It's similar to riding public transit--since I'm dressed and out of the house I'm pretty alert, but there isn't anything I really need to focus on, so I can use my alertness for whatever I want.  I can read, write, and listen to and observe people around me.  This is something that makes my life better at any time of the day, but it's especially nice to start the day like that.

In fact, my initial motivation for going to diners and cafés was happiness, not doing the dishes.  This was because I had a realization about the Stamford Museum and Nature Center.  SM&NC is a place where I spent a lot of time when I was growing up and have a lot of memories of.  My parents brought me to lots of classes and events there, we would volunteer at events, and my dad and I led a hike there every fall for about 19 years.

My priorities in adult life have pretty much always been: 1)survival (getting up in the morning, going to work, eating), 2)lofty goals (writing, reading, having meaningful relationships), and 3)short term pleasure (sleeping, mushing out, or anything else that takes no effort to do).  But last year I came to the pretty obvious realization that SM&NC wasn't just automatically part of my life--my parents had decided that it would be fun to be involved there.  This is why people do things that take effort and don't seem to have an obvious benefit, like going on vacation.  It actually is a good feeling to plan and make time and put in effort just to do something fun.  It's also a different kind of fun from falling into bed at night or running into Walgreens to buy candy on the way to work.  You can enjoy it more if you scheduled the fun.

Obviously, these are just the things that have made me feel better and function better this year, and won't necessarily work or be affordable for other people.  But I wanted to explain and share them in case they could give other disabled people some hope about making daily life easier.  Seriously, I feel way happier and my face doesn't hurt, and that's quite a thrill.

Mushballing

Sometimes I try and come up with new frames to explain the decisions I make (or not-so-voluntary things that people think are decisions).  Sometimes this is for other people but more often it's just so that I can be okay with myself.

Today let's talk about being a mushball. I am a mushball.

If you want to know what a mushball looks like, take a piece of soft bread, squish it into a ball, and get it wet.  That is approximately me.

• droopy
• doesn't react to new situations
• doesn't like talking
• is not up for reading anything difficult or unfamiliar
• probably isn't good at writing, either
• likes to eat, read simple things, and watch TV, while propped up with pillows so it doesn't have to suffer the indignity of trying to sit up on its own

Actually, if you know me in person this might not be your impression of me! That's because I can usually corral myself if I have to be around people or do tasks that I need to focus on.  I'm glad about that because a full-time mushball life would be boring (I also would not be able to have a job or anything), but I still need to return to my natural mushball state or everything gets totally out of control.

Being a non-mushball (like if I am going outside or interacting with anyone in person) kind of feels like being in crisis.  It feels like have to tense every muscle in my body so I can be alert and anchored in time and try to respond to everything that is going on.  It's not really that bad, but trying to be tense and alert permanently would be the same as trying to stand up forever.

When I've been in situations where I can't mush out for really long periods of time (like when I was working 12-hour shifts with a 4-hour commute) what happens is just that the mushiness spills into everything.  Like, usually mushballing happens when I'm by myself in my room, and the rest of the time I'm more or less tensed up.  If I don't have any mush time, then I end up being mushy in situations where it's problematic and could even be a danger to me or other people.

So, mush is important is what I'm saying.  But not mush is important too.  It's depressing and not very satisfying if all I do is lie in bed, eat, and not talk to anyone, but if I stay at home that's probably what is going to happen.  It feels like my body hoards mush time and is pulled toward my bed like a magnet, although it probably has more to do with cueing.  If there are cues making me feel like this is mush time, then my body/brain aren't going to be ready to tense up.

• dressed = non-mush
• pajamas = mush
• in my room = mush
• outside = non-mush
• speaking = non-mush
• makeup = non-mush
• contacts = non-mush
• glasses = mush

This explains why certain things upset me and make it hard to focus, like talking on the phone in my bedroom or going outside without makeup on.  I had a lot of trouble a few years ago because my eyes were being irritated by my contacts and I was supposed to wear glasses all the time, but I just couldn't do anything very well when I was wearing glasses instead of contacts and started having mental health issues because I was so frustrated by my inability to do things.

I feel like a lot of people must feel this way to some extent, because they go to coffee shops to work on the computer or to study.  I think it's more extreme for me, because people don't seem to understand some of the aspects of my mush situation, but I like to use coffee shops for the same thing.  Something that I'm trying to address these days is how to keep as much mush time as I need, while making sure that I have free time that isn't mush time.  I want to have free time when I am alert and can really devote myself to things I'm interested in, instead of just floating.  I'm trying to spend some time alone at coffee shops and diners whenever I have a day off.

This brings me to the original subject for my post, which is that I've made a 2014 resolution to never prepare food for myself in my house.  If I'm eating with my housemates that's an exception, and so is if I'm not doing well and need to have a full mush day.  But otherwise, preparing food at home just leads to me lying in bed, eating super slowly and spacing out, sometimes eating way more than I intended to because I don't want to get up to put the food away, and finally surrounded by a bunch of dishes that I'm too mushy to take care of.  It's gross and depresses me.

I wanted to write about my resolution because I always get the message that going out to eat and not preparing your own food is lazy and a waste of money.  To me, it isn't laziness because it prevents mushy eating.  In the short term, it definitely costs more money--I can't afford to spend more than $14 a day on food and it's hard to keep to this eating out, whereas I could easily spend much less if I was only eating at home.  But I feel like it's worth feeling better, and it also has meant that I never get food delivered anymore, which was even more expensive than going out to eat.

Anyway that's all I have to tell you, and now it's time to return to that of which I speak.

I guess I just like hating things

This isn't a for real post but my friend Bailee and I had a long conversation where a lot of it was about being compassionate and open toward people.  In the past year, Bailee has gotten really into approaching problems this way and I really like it in her, and theoretically, I want to be compassionate to people too, but in practice it can sometimes bother me when she suggests how I could deal with situations in a compassionate way.  In fact, I got so upset about some of her advice last week that I sent her an email saying "If other people's feelings matter so much that makes me want to die and that is a feeling too!!!" or something equally stellar.

When we had our conversation tonight, I kept thinking a lot about ideas and principles that are good sometimes but don't work in certain situations or if they are applied too liberally.

Somewhat similarly, I thought about the idea of supporting someone.  For example, I talked about the idea of a friend who has irrational fears and the first time he talks about them, it seems easy to just go through the fears and talk about them and try to calm him down and explain why they're not rational.  It's your instinct to do that and it feels good to try and help someone you care about.  Maybe at the time you would even feel committed to always helping your friend in this way.

But then I thought that you could get really tired of doing it because you want to talk about your problems or you just want to talk about a TV show or you just want to read a book and not be with your friend at all, and you're just bored and frustrated about going over your friend's irrational fears because you know they're irrational and you would much rather do something else and now it's starting to feel like you pretended you were someone you aren't because at one point, you really were happy to help.

And I also said that anyway it might be better for your friend if he talks himself through his fears independently instead of getting reassurance from you and that might be a way of dealing with the problem that yields more long-term improvement.

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I talked about, "You need to get out of your comfort zone."  This is actually useful advice for someone and maybe everyone.  But it can be such bad and upsetting advice for some people to receive in certain situations.

For example, let's say someone has chronic pain and she is dragging herself around to go to work and basically do the things other people do until she is almost crying.  Not understanding this stuff, a coworker asks if she would like to go to a dance party and when she says no, the coworker says, "You need to get out of your comfort zone."

I guess this is how I feel sometimes when someone suggests that I should be more compassionate or think about other people's feelings more.  Sometimes I feel like there's such an extreme amount of pressure on me that I'm just going to drop dead without warning.  It's so hard for me to even appear to be doing the bare minimum of what other people do, but in addition to doing that, I have to apologize for not doing it as well as other people, look happy and comfortable, and be suitably ashamed of not having hobbies.  It creates a weird twisted feeling inside of me where it seems like there's no room to even experience one demand before I have to fulfill all the demands that totally contradict it.

When I'm feeling upset about something someone did and Bailee suggests that I should be more open to them or apologize for my failings, it just makes me really triggered and makes me feel like my ever approaching doom has scooted a lot closer.  But I actually feel like this can be good advice for a lot of people, and would even be good advice for me if I didn't think of it in a way that taps into all the stuff that upsets me so much.

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I associate anti-ableism/disability stuff with being judgmental and I see that as a positive thing.  Culturally as a disabled person I am encouraged to see bad things done to me or other disabled people in terms of how bad our disabilities must have made the aggressor feel.  I felt this way for a long time but when I became more political I decided to start seeing life in a more black and white fashion and it was very relaxing.  It was bad to kill someone, be mean to someone, insult someone, bully someone, etc.  If you could logically explain why someone shouldn't be treated a certain way, then it was okay to say that it was bad to treat them that way.  It wasn't wrong to say these things were bad instead of thinking about the feelings of the aggressors.  It was okay to just be mad at the aggressors and say they were bad.

I think this is really powerful and basically correct but my attachment to it can sometimes mean that I get sad when I develop more complex ideas of things.  Like, if it's taken me a lot of effort to acknowledge that something someone did to me was bad and I'm relishing the fact that I've decided to start hating the person and thinking they're a jerk and not feeling guilty about it at all...then it can be pretty hard when I start getting to know other layers of the person or forgive them for what they did.  Sometimes I just want to give myself a hate break because I don't think being forgiving and open is going to make me feel as relaxed as hating someone who did something bad to me.

And those are my thoughts about this for now.

About Me

I am always trying to work on the “about this blog” page because, since I am not a famous writer or performer, it’s just about the only opportunity I have to describe myself.  When I was 15 I was really into personal websites so I can attest that I’m not the only person who needs to make a whole page on the Internet just so I can tell you my favorite color of lipstick (Violet Frenzy) and my favorite Disney Channel Original Movie (obviously Mom’s Got a Date With a Vampire).

However, as I’ve gotten older I have less and less to say about myself.  Don’t mistake that for an increase in humility.  I just can’t do as much now.

When I was in college, I would have described myself this way: “I’m studying creative writing and Latin. I’m a cashier and I take classes where my teachers and classmates insult me so I can volunteer with disabled kids.  I write fiction and pop music, and I also make little art projects, like I take pictures of myself pretending to be a ghost leaving my body.  And I write a blog about disability issues.”

Now it’s more like: “I work as an aide for a fantastic person.  Occasionally I write in my blog and every few months I work on music a little bit.”

My phrasing has misled at least one friend into thinking that working for Anna is very difficult and this is why I don’t do anything else.  I don’t think working for Anna is hard and it’s easier, better for me, and more meaningful than most things I was required to do when I was in college.  But my life was much more physically circumscribed when I was in college and a lot of things were provided for me.  I was already having trouble with daily living things when I was in college, but there were a lot less of them.

The amount of work that goes into getting ready in the morning, traveling to and from my job, getting ready for bed, and trying to eat and shower an appropriate amount takes up at least as much of my cognitive ability as my job does.  I also can’t let myself space out at work because it would affect someone, which wasn’t really the case with my college classes.  I’m glad that I spend my days somewhere where my presence actually matters--one of the things that made me so angry and depressed in college was that I was required to exhaust myself doing things that didn’t immediately benefit anyone.  But having to be alert means that my job drains me of energy much faster than my classes did.

If I don’t have to be at work and I’m not trying to deal with eating or hygiene, I’m trying to force myself to focus on getting stuff done around the house so I won’t make life harder for my roommates by not doing my chores (which are already disproportionately tiny compared to theirs).  If I’m not trying to force myself to do that stuff, I definitely don’t have it in me to do anything but lie down and watch or read something in pieces with spacing breaks.  If a friend asks me to hang out, that’s usually good because I can let them do the focusing and make the decisions.  I can enjoy what we’re doing.  But when it comes to stuff where I have to focus--like writing or working on music--it never seems as important as lying down and trying to forget how much I hate moving and thinking.

I can tweak this to sound better or worse, right?  Oh the existential anguish of having to drag myself to the shower every four days.  I don’t need to be an PCA/writer/musician like I expected to be when I was younger.  I do some stuff I like and I feel like my job is meaningful and I do think that’s the most important thing.  Sometimes I still get upset because I feel like it’s unfair that I don’t feel better or get to worry about things less or do more of the stuff I’d like to do.

I came across the blog Dealing with Dysautonomia, which is really good.  Maddy writes about how she became sick when she was 14, and how she struggled with her identity when she couldn’t do the activities she used to identify herself with.  I don’t know Maddy and don't want to quote her without asking, so here is the post I'm talking about.

Sometimes I sit down and try to make plans for organizing my life in a way that would magically enable me to write and play music.  I really hope I figure it out, but the answer might be that there’s no figuring around not being able to do as much as I expected.

The point is I may have to just tell you my favorite color of lipstick is Violet Frenzy and leave it at that.

I’m Autistic.  I am 25 and live in San Francisco, in the United States.  Here’s the blog directory which is not up to date--the reason I made it was because I used to write about a lot of non-disability-related things on the blog and I wanted the disability things to be easier to find.  Here’s me and Jonathan Wilson being really cool.

(A young white woman, with a stuffed elephant on her shoulder, is wearing a shirt that says “?$#@&*!! YEAH MAN!")

Services

Liebjabberings was curious about what kind of services I'm thinking about when I complain about people like me not getting services. I actually have never thought about this much because I know I won't ever get them, but I got interested in thinking about what they would look like.

A main thing I'd need is direction to work on the non-urgent things I mentioned in a post a few months ago. In that post, I discussed how I'm usually able to get myself to get up, commute, work, eat, and occasionally shower, but it's too hard to do anything else and that creates problems for me.

So for me, that could be meeting with a support worker and the worker could list things most people do, like getting haircuts, regularly going to the doctor, etc. and I could say if that's something I want. I could also add other goals that aren't on the list, like getting new curtains (random example).

If there are things that could be done with the worker in the short term the worker could just walk me through those things and/or do them for me. It might not be realistic for the person to actually go with me to get new curtains and stuff, so I think the way they would help me with something that takes place over multiple days would be to schedule with me exactly when I would do it and maybe check in with me by text to see if I'm able to do it.

A big problem for me is dealing with food. I usually don't prepare food for myself because it's too much work, especially when I'm feeling foggy and tired which I usually am at night. The main reason I have trouble paying my rent is because I don't really have enough money to get takeout or junk food that much, but I do it a lot.

I think there are a few possible ways this could be dealt with:

1. A worker comes to cook for me.
2. A worker comes to supervise me while I cook, or doesn't always supervise me in person but we spend a lot of time deciding things I could cook and planning what I will cook every day for the next week. I think this could make things seem a little easier but without actually doing it, it's hard to be sure whether I'd consistently cook for myself if I had more guidance.
3. I could be given more money so it doesn't affect me badly to get takeout or go to a restaurant instead of cooking for myself.
4. I could somehow get a meal plan at a college cafeteria--this would be nice because I wouldn't have to do dishes, but the obvious problem is that I'd have to go somewhere else to eat and that could be kind of inconvenient. It also would probably cost more money.

I'm not really sure which of these options would work but the short version is I would want some help with food.

Another thing I would want is someone to advocate for me and help me advocate for myself. I have a lot of trouble saying no and I also have a huge block on talking about my problems with fatigue or telling people when I'm sick or having a dissociative episode or haven't slept, or basically anything that makes it harder for me to do stuff. The reason this creates problems for me is because I can't call in to work if I am not doing well because I can't talk about what's going on. I also have trouble because one of the agencies I work for will sometimes ask me to work extra hours when it's not really healthy for me to do that; recently I've been trying to deal with that by not answering their calls and being so difficult to schedule when I do accept a job that they end up not giving me the job. I really don't like treating people this way but I feel like I don't have a choice.

So the short version with that is I would like someone that I can trust to support me when I'm saying I shouldn't go to work, work extra hours, etc., even if it's hard for me to articulate why and the person has to work to understand what's going on; and I would like the person to also be someone who can call in for me and also help me learn more about how to talk about this stuff better so that I don't have to go to work when I'm sick.

I'm not actually 100% sure if these things would make me have more energy/cognitive function and be able to do more "fun" things. Maybe I just don't have that much energy/cf and the only way I could pursue fun activities would be if I did not have to work. But I like my job, so that isn't something I would want.

I think that even if these things didn't make me able to do more they would improve my quality of life and my health a lot.

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.