Why Can't You Be Normal?

Bear with me, this is going to get long (I have a brevity deficit).

Let me tell you a story. So there's this woman in a wheelchair. She's paralyzed from the waist down. She's trying to go shopping and there's a big crowd of people and she's in the way. One of the people in the crowd says to her, "you look perfectly fine to me. Stop pretending you need that wheelchair and get up and walk properly."

She explains politely that she can't; she's paralyzed.

"Oh no, you look just fine. That person over there, with no legs? Now she needs a wheelchair. You're just being lazy. You just need to try harder."

It so happens that our girl has crutches slung over the back of her wheelchair to help with little short "jaunts" (like from the chair to the bed) and she gets these down and tries to walk with them. For a moment, she does just fine, but soon she gets tired and falls down.

People in the crowd mock her; some of them call encouragement to her. A chorus of "you can do it, just try harder," and "stop acting like that, you know you can walk just fine, you just need to stop being so entitled." "You look fine to us. Get up and walk."

And with all this coming on her, she convinces herself that there's nothing really wrong with her, and she could walk if she just tries hard enough. It would certainly make her life easier in many ways, so part of her even wants to believe.

She tries and she tries. She tries every way she can think of. She takes all the suggestions they can give her. But still, she can't walk like they can. She can only drag her paralyzed legs along for a few steps with the crutches before she falls. The wheelchair works better but gets in everyone's way.
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Okay, by now I'm sure you've seen the point of the story, but let me ask you this: what do you think of the people in the crowd? Was it okay for them to tell her "you look fine, just try harder?" What about the ones that were genuinely trying to help, and be encouraging? Was that okay? Or is telling a paralyzed person that they aren't, that they can act perfectly normal if they want to -- is that wrong? Isn't that bullying?
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Autistic people are like the woman in the wheelchair. Our brains are _different_. No amount of "trying" is going to change that. Now, just like the woman in the wheelchair, we can use "crutches"--which would be learning social behavior by rote (like memorizing a multiplication table)--for a while, but it's exhausting to do and eventually, leaves us on the ground in a heap if we don't take a break.

Oh, and the other woman, the one with no legs at all? She's like a person with Down Syndrome; someone who has neurological differences that are physically visible to "normal" people. Nobody tells her that she just needs to try harder, because it's obvious to them that she is different. But people with autism most of the time look just like the "normal" (neurotypical) people do. So they, _you_, get judged as if you are a "normal" person.

NT people have this social behavior they expect everyone to conform to, but very rarely will you find anyone who does. They are just as hard on each other as they are on you. The problem is, you're not doing what you do because you're choosing to break the rules. You can't learn the rules the way they do. Your brain is simply different than theirs.

Please, be kind to yourself and let yourself stop believing that "you should know how to behave around people" and "there's no excuse." Imagine what you would think of someone telling that paralyzed girl "you should know how to walk" and "there's no excuse for acting like you need a wheelchair."

(I initially wrote this in response to someone who said (online) the two initial quotes in the last paragraph. Unless she tells me differently, her identity will remain anonymous. I just didn't want to take credit for the words that inspired me to write this.)

The Wall at the Edge of Hell

The Wall at the Edge of Hell

I've been through hell 
These past few years 
I'm saving my strength 
To get out of here 

When I see that wall
Stretching up so high
I'll climb right on up 
Reaching for that blue sky 

Sh, I've a secret
Sh, don't you tell
You'll never get out
Of your personal hell

The ground: it's a quagmire
The wall: it's slick jade
The sky's pretty now
But soon it will fade.

Hush, it's all right now
Hush, don't you cry
There's no one to hear you
No one to care why.

Determined and ready
I will reach the top
And when I get out
I'm not going to stop

You mean you don't know?
You mean "ya dinna ken?"
At the top people wait
To shove you back in.

No one wants the reminder
That hell is so deep
That one could open up
Right under your feet

And so they pretend
That there is no night
And please don't remind them
It isn't polite.


<I wrote this a few days ago. Obviously I was not feeling particularly optimistic.>

Brain Full of Fish

My brain feels like a pond full of brightly colored fish, swimming so rapidly around and over and under each other that I can't see a pattern, I can't follow their movement, it's just an endless swirl of meaningless color and movement. It's very disconcerting.

The fish are facts. And questions. And fears. And emotions and a bunch of other things I can't even identify.

Today at work, we met with the company representatives from the company that is buying the part of my company where I work. Most people where I work got job offers, me included.

So why am I not head-over-heels happy? I still have a job, after all, even though I'll be making less money once all is said and done (and I am struggling a bit financially right now, before I make less money). Also, head-over-heels is an inappropriate term for me to use considering I've never done a successful cartwheel; the most I ever managed was head-over-teakettle (meaning I got halfway onto my hands and everything just flopped out all over the place, usually hurting myself). 

I guess because there are so many questions left unanswered. The sale completes this weekend, and until then, they can't really tell us a lot of stuff. And I've got to make decisions on which version of their health insurance I want to go with (or do I want to continue my current plan at COBRA rates until the end of the year); and this is a major decision that you can't just change on a whim. And yes, it's great I will have health insurance.

Just so many options, so many questions, so many things going around and around in my head. I'm experiencing information overload and honestly, I don't want to deal with any of it. I just want to sit and stare at the wall and pet my cats.

I discovered something weird, though. If someone asks me a question, say, "what's the specialist copay for the more expensive plan" I can retrieve that fish, I mean information, and tell them. But then the fish goes back into the swirling, incoherent pond and I can't get that information out for myself.

Time will tame the fish. I've been through these things before. I just don't know if I have enough time before I simply make a decision without enough of a knowledge base to do more than randomly pick one.

I hate overload.

The Mysterious Case of the Disappearing Friends

In my life, I've had people that I considered friends. They were people I went out with, to the movies, to their house, to restaurants. In one case, it was a coworker who helped me go shopping for grownup clothes back when I first started my job. She also went to the movies with me a fair amount, and occasionally lunch. In another case, in college, she invited me over to her house and made pizza together (that was fun, but also weird because she didn't have allergies so she didn't run her furnace fan all the time to clean the air, which meant her house was oddly silent). We traded books to read and had lots of talks.

You get the idea, right? I mean, it certainly looked like friendship. They willingly spent time in my company, just with me, and did so repeatedly.

Yet I must have been missing something. Because each of these people just vanished out of my life one day.

The co-worker took medical leave from work and never came back. Never contacted me. Didn't make a single attempt to maintain what I thought was a pretty good friendship. I didn't have her email or phone number, and it was over a year before she got officially let go, and I'd just kept hoping she'd be back soon.

The college friend vanished even more abruptly. Her email address went dead ("undeliverable"); her car, a very distinct bright yellow 1950s type convertible, was no longer around (and I used to see it a lot, just on the road, randomly, as we went to the same places to shop, albeit at different times). Her phone number just rang and rang.

I think perhaps something serious happened to them. Maybe something dreadful. Kidnapped, or mental breakdown so severe she couldn't remember her friends from before.

And then I think they just didn't like me. That they took the opportunities they were given (leaving work; maybe moving somewhere else) to cut all ties with me, instead of telling me straight up that they didn't want me hanging around them any more.

I can be a very clingy friend. I try not to be, but then I'm afraid I come off as distant and uncaring. I don't seem to be able to find balance in many things in my life, and friendship is definitely one of those unbalanced sort of things.

And sometimes, when I haven't had enough sleep and I'm truly getting paranoid, I wonder if the college friend even ever existed. (I know the coworker did. I've mentioned her name since she left and had people know who I was talking about. And yes, I did it to make sure she, at least, was real.) But I don't know anybody else who knew my college friend.

I don't even remember her name now.

Isn't that a creepy thought? That I could have made up a person and believed so truly in what I made up that I don't even know if she's real or not? I probably should not have watched that movie, A Beautiful Mind, or I wouldn't know that sort of thing was possible for the human brain to do to itself.

I wish I knew if other people had friends just vanish. No note, no good bye, no "I got a job in California we'll keep in touch" and then don't (the keep in touch part).

What Do You Do After You Get Everything You Ever Wanted? -- Ramblings on Grief

Trigger warning: If you've lost someone recently, or the grief is really bad, you might want to go away now.

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By the time I was 31 I had everything I'd ever wanted. Mainly because I had never been one to dream big. I wanted attainable things, and I got them.

I had a beautiful (both character and body) cat friend who I loved very much who loved me back. I had my parents, married happily to each other for most of their adult lives, who I loved very much and who loved me back.

I had a good job making enough money to buy what I really wanted (as opposed to "it would be nice to have that") and I'd had the same job since I graduated. (I really like stability and routine ... part of the autistic me).

And now I had a house, of my very own, that I was paying for over time (like a normal person!). I was not a burden on society. I was not institutionalized despite the many chronic, silent diseases I had (still have--and now I have more of them). A pretty little house in a good neighborhood with nice people on my street and a yard just the right size, not too small, perhaps a little bigger than I wanted but there was that giant oak tree in the middle of the back yard that I loved that would have been impossible with a smaller yard.

I had graduated from college and had a job in the same field I'd studied in.

I had a small group of friends and we met every week to play board games which I loved doing and loved being around them.

And this, dear readers, is everything I'd ever wanted. Friends, family, financial stability, independence, and love. (No, not romantic love. I'd never wanted that, and still don't.)

They say thirteen is unlucky. It's unscientific. It's superstitious.

And in 2013, Pippin, my beautiful, loving cat died, and as if he was the linchpin that held everything together, my world was torn apart.

What do you do when you have everything you ever wanted? You watch it all get ripped away from you, that's what you do.

It's melodramatic. It could be worse. I mean, my parents are still alive, even though my dad had a seizure three months after Pippin passed away that left him in the hospital for a few days. (Medication induced, by accident). He's fine. He's his old self, although he's retired now so it's a different "old self" than the one that worked 40 hours a week and thought it part-time work since he was used to working 80 or more hours a week.

I still have the same house. There's probably mold in the walls that I caused by installing a whole-house humidifier and not using it responsibly ... I haven't had the courage to pay someone to come confirm my suspicions.

Even still have the same friends, who have put up with a lot from me as I grieved in agony, developed several more anxiety disorders, and changed in personality so much that they probably wonder what happened to the me they used to know.

My anxiety says they probably liked that person better. I don't even want to play the board games I enjoyed so much anymore. I do, sometimes, and sometimes I don't, and sometimes I don't even go.

Pippin was such a stable point in my life. He was someone I could love and care for in my own, smothering way, and he enjoyed it and thrived under such care. He accepted me for who I was, even if I was crying in great gulping tears over something my boss said to me that day. (I said I had everything I ever wanted, not that my life was perfect!) He was always there for me, a steady, constant presence in my house.

Even if I ignored him too much and stayed out with friends too much and spent too much of that precious, precious time with him asleep or watching tv or doing things that didn't involve him. He still loved me, loved any time I spent with him. At least I took him with me when I went on vacations, until he got older and it got too hard to figure out where to stay when I got there (most places aren't cat-friendly) and then I just stayed home.

It's been almost three years, and I still miss him. It still hurts. Sometimes it hurts just as much. And I had so much support from friends and family during that first, horrible year without him, where I had no one "in his place", that I hate to tell them that it didn't work. All that support, all that outpouring of love to me, all that you did. It didn't work. It helped only a tiny bit. I still need it. But I can't ask for it; I won't ask for it--that much support is exhausting to give ... for me to give to someone else, so I assume it's the same for them giving it to me--and it's not fair to ask for that kind of support years and years later.

It doesn't feel like it's been years ago. Despite having three (!) cats now, all of whom I love, I still miss Pippin like he was just here. A moment ago.

I wish I were a child again, where three years was ever so long and couldn't be comprehended, and it was only my birthday the next year that took forever and ever to get here. I wish time didn't rush by so fast. I wish it didn't hurt so much.

When in fact, it doesn't "hurt so much". I miss him. I feel torn apart inside. I feel quite a lot of pain because he's just not here anymore. But it doesn't hurt "so much." Because I remember what it actually felt like right after he died, in those first few months, and it hurt so much more than it does now.

And I wonder how I stayed sane. It hurts now, it hurts a lot ... but it hurt exponentially worse in those first months.

Of course, I'm writing a secret blog in a public forum, so perhaps the question of my sanity should be shelved for a while.

But I saw something today, something that is really true, that says it better than I can.

I understand now that with each death, each passing of someone you love, that grief is absorbed into who you are. It never goes away. It never stops hurting--unless you stop feeling anything at all, anyway. And it piles up, the pain of loss, the grief, each one layering on top of the other, complicating your personality, making it deeper, more complex, but more to my point, more full of pain.

I used to want to live forever. I liked shows and books about people who could. Immortals and vampires and so on and so forth. I didn't understand why all humans didn't hunger to live forever.

Well, now I know. Because if you love, and it hurts so much when the people you love die, and that pain never really goes away, then after a while, by the time you're old, you're ready to leave it all behind you. Who would want to keep living with all that pain?

And right now, it doesn't feel like grief adds layers on top of me, like someone piling on blankets until it smothers me. It feels like grief rips holes out of me. Big holes, little holes, depending on how much I loved someone, how much I knew them. My uncle died (unexpectedly) last November. I loved him a great deal but I didn't know him as a person very well. Now I never will.

What happens when there's not enough left of me to rip more holes out of? I guess I just have to keep creating more me so there's more to take; the alternative is to shut down and not love anybody, and although I considered it seriously during the worst of the grief for Pippin, I decided I wasn't capable of doing that. Yet.

Pippin ... he was a person, albeit four-footed and furry. He had a lovely personality. He had a great sense of humor and was very patient. He saw me as the strongest person in his world, and because I didn't want to let him down, I was that person for him.

Now I'm not that person. My companion cat people aren't grown up yet. They don't even know who they are going to be, much less who they expect me to be (other than someone to hang out with and love and be loved in return ... which is helpful but doesn't help me be a strong person emotionally).

Maybe one of things I miss the most about Pippin is his faith in me, his complete, unwavering confidence that I would always be there for him. And maybe that's why the grief is still so horribly raw when I think on it. Because I wasn't there for him. Not at the end. He had a brain tumor. Progression of less than a week. Severe symptoms less than 24 hours. He couldn't jump, couldn't stabilize himself, couldn't land. He couldn't be on the bed with me, where he slept every single night of his life. He died on the floor. As close to me in the bed as he could get. And I slept through it. I slept through it. I wasn't even there to hold him.

I don't tell people that part. I don't tell them that I wasn't there for him in the end. That he died alone. That I was callously asleep. I should have slept on the floor that night. I should have slept there with him. Even if I'd slept through it ... He could have been against me, felt my heart beating as his slowed and stopped. Had that one last reassurance.

But instead I slept through the night, waking up only once, to hear scrabbling noises, like he was shoving his head into the corner to put pressure on his temples (it helps headaches, which cats don't normally get and the tumor was giving him). That's where I found him, his head in the corner of the big jewelry box and the wall, lying there with his tail against the bed, on his side, one paw stretched out like he most always did while he slept. He wasn't in pain when he died. He couldn't have, not and been positioned in a "happy sleep" mode like that. But if only I'd gotten up when I heard him.

Before he died I used to cry at the drop of a hat. I tear up now, but I don't cry. I don't even remember crying more than three or four times for him. I just aimed all that grief, the loss, the anger, the self-loathing, the incredible emotional pain, inward at my body and soul.

I lost fifty pounds ... people fuss that I'm too thin now ... I call it Pippin's last gift to me.

I don't tell anybody that, either.

Yes, I've tried therapy. Multiple times. They don't get it. Worse than useless. I guess I just have to live with the holes.

The Accidental Anorexic or At the Intersection of Autism and Eating Disorders

Well.

Turns out I have been eating under the lowest recommended calorie rate (1200 for women) for many, many years, for the majority of most days of the week. If I'd been doing this intentionally, I'd be an anorexic. Nobody in the medical field wants to believe that someone can do this accidentally and still be overweight and relatively healthy.

But I don't have a good relationship with my stomach. When I was a kid, I joked that I had a cast iron stomach because I could eat anything. Didn't realize that my definition of "anything" was pretty limited, actually, and didn't include spicy food at all. Well, I didn't like spicy food. Why would I eat it?

Here's the thing though. I didn't eat because I was hungry, or because food tasted good. I ate food that didn't taste bad to me (there's a big difference there!) and I ate because I had to. My mom insisted on it. But she wasn't making me eat just to eat; she insisted on it because "you have to have food to make your body go." In other words, if I wanted to do stuff, to go anywhere and do anything, I had to have food.

So I ate. Rather reluctantly and out of habit. And that's the autism at work. I didn't have a good relationship with food and taste and my stomach simply because I don't have a good grasp on any of my emotions and physical sensations. I often get them mixed up, and rarely, even now, know what I'm feeling.

If my stomach feels "bad" I have two options: one, I'm hungry, or two, I'm sick. I've developed a plan based on experimentation. I eat something, and if I feel worse, then I'm sick and shouldn't eat more; if I feel better, then I was hungry. You already see how this is a problem. Sometimes if you're very hungry, eating a little bit can make you feel worse as your stomach says, hey, just getting used to being empty down here, what'd you do that for?! And if you're sick, you're using more energy trying to get rid of the infection, so you actually need more food.

Now that I have an official eating disorder (binge disorder, not anorexia), I have to eat no matter what my stomach is telling me, or what I think it's telling me anyway.

It's working better this way, to be honest. Last week I had a horrible stressful day and I didn't want to eat anything. I wanted to throw the whole bedamned food plan out the window and just not eat, do what I wanted to do when it came to food and not what I should be doing.

After all, people have cheat days, right? People have fasting days? Some people even have it as part of their religion. Just one day won't hurt. And I felt so nauseous.  I really, really, didn't want to eat.

But I did it anyway. Thank goodness for autistic routines. I've been doing this food "three times a day plus snacks" since January and it's been enough to trigger a routine. So it was honestly easier to eat what I'd brought to eat when I'd planned to eat it than fight the routine ... Even though I badly wanted to just skip the whole thing.

And by that evening, I felt much better and was glad I hadn't thrown over my recovery for one stressful day.

Because the autistic routines can be made to help you or you can be at their mercy, but if you're using one to help you and you break it, even for a moment, even for a day, you risk shutting the whole thing down. It's like part of my brain is a bratty child that if it can't have its routine, then I can't have that routine either. Ever again.

The biggest problem with therapists is they don't realize this. They don't understand what a powerful tool an autistic routine can be in recovery and they don't understand how incapable some of us are in understanding our feelings...even hunger. So they try to make us flexible in our eating choices (no, because to me, flexibility means "yes, I don't have to eat when I'm stressed, Whoo hoo!") and try to submerge the routines because for neurotypical people, "inflexible routines" rapidly become distressing to them.

Whereas to people like me, it's helpful, useful, and calming to have routines. I don't have to worry I'm going to make myself too skinny or too fat. I have my food routine and my calorie counting app to ensure that I'm eating enough even when stressed and not eating too much even when bored or happy.

I wish people who specialize in helping people with eating disorders could also sub-specialize in helping people who are autistic with eating disorders. Judging by the statistics I've come across in researching how to "make me better" (as far as the eating disorder goes), female autistic people have an awfully high incidence of eating disorders.

But I'm the in middle of it and even I keep discovering the interplay between the two. I just want someone to have discovered this already and put viable options out there, not just the stuff they tell neurotypical people to help them recover.

Humph. Also, I found out that resetting my metabolism is going to take probably a year at the least and I'm not even at the beginning yet ... You have to get back up to what your true maintenance calories are before you get to say "now I'm resetting my metabolism." So what, I'll have "recovered" by 2018? The end of that year?

And I think I will always have the "stress means don't eat" response ... Just like an alcoholic who hasn't had a drink in many years, but still can't go into a bar.

But hey, good news on the food control front: I had the opportunity to binge on chocolate chip cookies, homemade, my worst binge food, on a Saturday which is my worst binge day, and I had two. Two that were planned and in my calorie allowance for the day.

Am I Pretty?

You know, don't you. You know if you're pretty, or attractive, or cute, or handsome, or whatever adjective strikes your fancy as something you want to be.

But I don't. I have no clue if I'm pretty or not. I have absolutely no idea whether looking at my face gives people pleasure because they find it attractive or repulses people because they find it unattractive. I don't think I'm ugly, mainly because it seems like there are few truly ugly people (or at least, that I think are really ugly) and those people get uncontrollable physical reactions from others.

In other words, people flinch when they see a really ugly face but they control the reaction and try to pretend it didn't happen. Something along the same lines as when they realize that someone is missing an arm or leg and is wearing a prosthetic. That same wince and cover-up. People don't do that to me so I don't think I qualify as ugly.

Am I pretty, though? Maybe it shouldn't matter. I'd like to know, even if it doesn't matter.

But there is literally no one you can ask that question of and get a straight answer. I've thought about this (probably too much) a lot and gone through a whole host of people I could ask.

My mom. Nope. She's going to tell me I'm pretty (and probably add something about pretty is as pretty does, or something religious). She's going to think that I'm pretty because she loves me, and cares about me, and obviously, if you ask the question, am I pretty, you do not want the answer of "no" even if it's true.

Unless you're me.

My siblings. Nope again. Same reason as my mom, with the added confusion of sibling rivalry and teasing going on. No matter what they said, I couldn't trust it to be truth--they could be teasing me or just fed up with me that day and say "you aren't."

My friends. Well, of course they aren't going to tell me I'm unattractive. Your friends aren't supposed to say things like that. Even I've learned that. And, oddly enough, not the hard way, the way I learn most social interaction rules. So they're useless for the truth in this situation.

My enemies? If I could identify who was someone who truly disliked me vs someone who just doesn't care, even if I could, that's a stupid idea. They're going to want to hurt me. Depending how subtle they are, they're going to tell me I'm unattractive (no matter what the truth), or they'll tell me I am attractive but "let" me overhear them mocking me for asking the question later, and saying to one of their friends that they can't believe I asked such a stupid question but they just "didn't feel right" telling me the truth so of course they told me I was pretty.

People who don't know me and don't care? Well, it's a very odd thing to ask a random stranger. If it's a guy, they'd think I'm flirting, and say I'm pretty so I keep flirting with them (given that we've already established I'm not ugly). If it's a woman, it kind of depends on what kind of person she is and how her day has been; if she likes to cut other women down or build them up; if she's under a lot of stress, etc. But most likely the answer will be that "you're pretty" because everyone knows that telling someone she's not pretty, especially if she's acting all vulnerable and childlike by asking you directly, is a good way to really make someone's day very bad. And most people don't want to make you feel bad--not if they're total strangers.

So that's it. All the different groups of people I could ask. And not a single one could be trusted to tell me if I'm actually attractive or just okay to look at.

And why don't I know? Everyone else seems to have a good idea if they're attractive or not. Is it because of the prosopagnosia, that I can't remember my own face once I turn away from the mirror? I don't seem to repel my own self in the mirror, but that just could be because I'm used to me.

Or is it something with the autism, making me not able to see a physical worth judgement that my culture holds dear but I don't understand?

In any case, sometimes it bothers me. Like a tiny hangnail, so tiny you forget which finger it's on when you actually get to a location with a nail clippers. Just a little bit.

Am I pretty?