Second Chances

I believe very much that most people deserve a second chance at things. But for the most part it never happens cause that’s just not the way the world rolls. But something very interesting is happening tomorrow and it really began many, many years ago.

Over fifteen years ago (gah!) two friends showed up on my front porch. It must have been a weekend because it was the middle of the day when we normally would have been in school. I remember them both, C and H, on my porch, a car with more of my friends waiting at the curb. We had tickets to go see a movie and we were all really, really excited. I was excited to but overwhelming my excitement was a great, welling fear. The fear that if I left my house something terrible would happen to the ones I was leaving behind. My mom and younger siblings would be dead when I arrived home after the movie and if I had just stayed home it wouldn’t have happened!

It was my senior year in high school. My OCD, something I’d lived all my life, was out of control. Two new things had cropped up suddenly. I didn’t know their names then but I do now: panic disorder and agoraphobia.

My friend H had called about fifteen minutes ago, letting me know they were on their way. I had hung up, my fake cheerful smile stricken from my face,  and I ran to the bathroom and vomited copiously into the toilet. I hung there, hands on my knees, half sobbing. Snot was dangling from my nose, tears streaming from my open but unseeing eyes. I was covered in sweat, could feel it streaming down my back in that hot, unventilated bathroom but I was shaking from a cold that seemed to seep outward from my blood. My bones felt like water and then suddenly like shards of glass. My heart was beating so fast it felt as if it were going to tear itself apart. My chest suddenly felt too small for my lungs. My inhaled breaths felt swampy and fetid, not giving me the oxygen I was gasping for. I threw up twice more in quick succession, flushing when my stomach was finally empty. In that bathroom with the toilet that often clogged, faded linoleum tan on the floor, wallpaper a pale beige with flowers. I took my glasses off, folding and carefully placing them in my pocket, and washed my face with hot water over and over until the tears stopped. I could breath now and took a few quick breaths through my nose. I dried my face with an old  scratchy blue washcloth that I hated. Then I carefully replaced my glasses and regarded my reflection in the mirror. As usual the reflection seemed a stranger. It was a bit peaky around the eyes, red and a bit swimmy. But I had bad allergies and my glasses were almost half a  year old, badly in need of replacement but the insurance company didn’t agree. All my friends knew I’d read myself completely red eyed and into an intense headache before giving up my beloved books. I tried that thing, that thing were you pull up the corners of your mouth and show a bit of your teeth. The smile looked pretty convincing but of course it did. I’d been working on it for about a decade.

I didn’t look like I’d been throwing up into an old toilet just a few minutes ago. I didn’t look like a nightmare scenario was on repeat in my head. Every bloody, violent torture it could conjure crisp and clear and visited upon my loved ones. I didn’t look like my chest felt three sizes too small. I didn’t look like my bones felt like a million shards of cutting ice. I looked like I hadn’t had a good night’s sleep, deep raccoon rings under my eyes. But those dark half circles were normal to me anyway. I would sacrifice sleep for a good book. It was a running joke. No snot or vomit on my t-shirt.  I looked at my smiling face and the doorbell rang. I left the bathroom, called to my mom that it was my friends, and answered the door. C and H stood there, ready to go. I smiled something felt weird and said “Sorry guys. My stomachs acting up again.”

I think they argued gently with me, conjoling me to come along. I don’t remember what I said but I shook my head a lot, with that weird feeling smile on my face. I simply couldn’t go. They all knew I was having stomach problems. I’d been missing a lot of school lately to go to all kinds of doctors. I still had a band-aid on the inside of my elbow from a blood draw the day before. I simply couldn’t go, so sorry, not feeling well, can’t chance it, cannot go. They left with odd looks on their faces that I didn’t even try to understand.

I closed the door, locking it and checking it as was my compulsion. I went to my bedroom and laid on my bed facing the wall. I think my mom said something to me but I can’t remember what it was or if I replied. My memories of this day are very clear before closing the front door as my friends walked away. After that things are very hazy for a long, long time and I stayed in that haze, knowing something was terribly wrong with me but no longer caring.

My mouth opened and I said “Sorry guys. My stomachs acting up again.” What I was really saying was “I’m done fighting. The fear wins. I’m not leaving.” And I wouldn’t leave that house, my childhood home, for any reason except school for the rest of the year. My friends stopped asking me to go out and I drifted farther and farther into the hazy abyss where I allowed fear to control my every decisions. Where my bones felt so heavy I could hardly hold myself up and words were just too difficult to put together.

The movie we were going to see was Hayao Miyazaki’s Spirited Away. The first movie of his I’d seen was Princess Mononoke. I recorded it on VHS and watched it over and over, as many times as I could. Sitting in the closet of my old room, my both my sisters asleep in the main room. That tiny TV with the VCR plugged in, the volume low enough so that it wouldn’t wake them but just barely loud enough for me to hear if my face were close enough to that little TV. I wanted nothing more than to see Spirited Away on the big screen. Imagine Miyazaki-senpai’s vision larger than life!

My fear was not greater than my earnest, heart felt desire to see Spirited Away. I just had nothing left within me to fight. None of the adults around me seemed to see anything. My friends knew something was up but had no more power than me. What I remember more than the fear as I lay on my narrow twin mattress that afternoon so many years ago was a deep, acidic loathing for myself. That I could just let that stupid, pointless, untrue fear stop my life. Another part of me, a deep, unfeeling thing told that loathing that there was nothing left. I had fought and fought and fought and I could not win. Not only could I not win, no one was coming to my rescue. I had reached out as much as I could. People couldn’t hear me, couldn’t see what was happening.

“There is nothing left,” Apathy said calmly, surely. “I hate you,” Loathing replied. “That is a waste of time,” Apathy rejoined and then things inside me went far away and unimportant for about two years.

Fast-forward fifteen years into the future and I have a ticket for Spirited Away tomorrow evening. I own it on DVD, along with Howl’s Moving Castle which I got to see in a theatre in California when it first came out. And of course I have my first love, Princess Mononoke, which I will watch when I finish this post. But here is that elusive second chance. A chance to tell agoraphobia and depression that they don’t control me anymore. I know their names and I know their faces and that makes me mighty.

But, like my recent Pokemon pickup, I am very nervous and so very excited. I love to go to the movies. And this is a unique chance. Or at least it feels to me like it is. So I’ll wear one of my graphic t-shirts that make me feel braver than I actually am. Probably my Shingeki no Kyojin scout’s shirt. It is not part of my routine and it will leave me exhausted. But I will be elated and exhausted and the people I am going with understand that.

More than anything, the pills, the therapy, brave t-shirts, fidget toys, stimming, knowing my friends understand what I am going through makes me feel strong. I understand it too and I know how to speak so that others can hear my struggles. I can reach them now, even if my hands are shaking and sweaty. They will know. And they will help.

And to anyone else who is going! If you have a 3DS take it along with you in sleep mode. Getting street passes is always a fun bonus.

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I’m so excited but…

The latest Pokemon game comes out tomorrow. I love Pokemon. I’ve been playing since Yellow, Red, and Blue. I still collect the cards and plushes and t-shirts and watch the animes. I have a great time trading and battling online with friends, strangers, and some of my siblings. I’ve been excited about this game since the first mention of it. And (hurrah!) my local game store is having a midnight release. I haven’t been to one in years and I remember they were always fun. It’s a great opportunity to get some street passes on my 3ds and start my latest Pokemon adventure.

But…

But…

But…

I don’t know if I can go. I’m scared. I’m not supposed to go places at midnight. There will be strangers there. They will want to talk. They’re excited and glad to see other Pokemon masters! Me too!

But…

But…

What if I say the wrong thing? What if, in the middle of a friendly conversation, all the talking creaks to a rusty halt, I get that LOOK, and those people I was talking with shift away from me as quick as they can? I did that thing again. Its kinda the social equivalent of ripping a huge fart. I didn’t mean too, I don’t know how to fix it, and the faux pas lingers.

So maybe I don’t go, right? Its not that big of a deal. I just didn’t feel like it right? Wrong. I did but I gave into the fear. I let the fear control me. Because it can get worse than what I’m feeling right now.

My head and stomach hurt. But if this fear gets worse I could end up vomiting. Vultures will vomit to get a predator to leave them alone. Its a low but genius tactic really. Is anyone going to blame me for not going? No. I’ve been vomiting. I could have a stomach bug. I could be contagious. I should rest in bed quietly with my books. But I know.

The vomiting is partially stress, partially psychosomatic, and partially evolution. In a sense I sort of did it to myself but not of my own volition. I would rather have diarrhea than vomit but my body, pushed to a mental and physical extreme it cannot find a way down from, expels the contents of my stomach. My brain must find a reason or release for this intense anxiety so vomiting is actually a very logical decision. Many poisons, from bad food or a poisonous plant or animal, cause anxiety as a result of the toxin’s effect on the nervous system. If something is trying to poison me my body wants to expel it as fast as possible and that fastest way is puke. Its a remedy as old as time.

But I know the difference. While I’m resting quietly in my room I’m hating myself. I might be silently crying. Maybe not. But I hate myself. Because I can’t handle something as easy as going to pick up a video game. A place I like going for a product I really, really want. I gave into the fear. I let it win this round and I hate myself. Cowards die a thousand deaths as the saying goes. And every time the disorder wins (which ever one it is) I lose a bit of myself. Next time it will be so much easier to give into the fear and the hatred I feel for myself will be that much more fierce.

So why hate myself? Right? Give me a break, me. We can’t win them all. Just go in the morning. Its cool. But what about when the clerk (which ever one it is, they both know me well by now) asks me where I was at midnight. They were sure I’d be the first one at the door, foaming at the mouth. I’ll laugh a little maybe. I’ll certainly smile.

“Oh, fucking migraine right?”

They commiserate. One of the guys who works there has migraines himself. The other has a mom and a girlfriend who have them. Those things suck. Screw up your plans and your life, right? Here’s your game. Glad you’re feeling better.

But what if I said, “Oh irrational fear of changing my routine, right?”

They’re cool guys. Both of them. When I go in and the store is quiet (most mornings) we chat about anime, games, podcasts, apps, all that cool stuff. I guess we aren’t really friends but we’re on more than just a customer-buyer sort of basis. I know a little about their lives and they know a bit about mine. We talk about rooting phones and emulators and other stuff. But not mental illness. That makes everyone uncomfortable. There’s this stigma and its not going anywhere. I wish it would and I hope to think that things like this blog make it easier for people to talk about a topic that used to be verboten. But here’s the unforgiving truth. If I mention that my anxiety disorder is to the point that it interferes with the enjoyment of my life I don’t have a disorder I am mentally ill.

Big difference there. And like my faux pas analogy earlier I didn’t mean to make everyone so uncomfortable, I can’t take it back, and that knowledge lingers. It changes how people see you. It changes the way they look at you. Its happened to me before and it will happen again. But the thing is chatting with the guys at the game store is one of the few social interactions I can carry out without screwing it all to hell. I stumble sure but its all cool. They’re sorta used to people with odd social skills. I recover and we’re good. I don’t want to make the game store a place I feel like I can’t go anymore. They won’t make me feel that but I will. I will get too tense knowing that I’m going to be tense. And yeah I should rip back the stigma of mental illness and fight the good fight.

But its nice to go somewhere where my mental illness doesn’t matter. Or hell doesn’t even exist. They don’t know about it and I don’t have to tell them. I just get to be that girl that likes JRPGs and anime and Night Vale and all that other stuff. I have to carry my mental illness around with me everywhere but everyone doesn’t have to be aware of it. They know I have OCD and autism down at my favorite used bookstore. Its cool cause I made the choice to tell a mom and her son with autism that I have autism too and the clerks overheard me. Also I put books back where they belong. People put them where they don’t belong and I put them back.They kinda like that about me. But I made a choice to share that about me. I get to make that choice everywhere I go. And some times its nice to just be another person. A person who is a little weird and probably overly enthusiastic at times but normal is a social construct that doesn’t exist and is boring anyway.

I’ve meandered a bit, as usual. But here’s the rub. Its Schrodinger’s cat but the outcome is all ready known. If I go I have my game. If I don’t I have my self hatred. Its the course that hasn’t been proven yet. We know that the vial will always break in the box. The issue at hand is whether I break or not. The outcome of the only two courses of action is all ready known. And it isn’t what they think or know or don’t think or know. Its me. Its what I think. Its what I feel at the end of this that matters to me.

The lady or the tiger?

Update: I went. It was super crowded but the guys were really organized so everyone was in and out fast. Had an asthma attack but I always take my trusty inhaler along. But I am exhausted. Good luck and good night.

Frustration

Right now I cannot find my wallet. It is here in the house somewhere. That much I know. But I have torn my room apart, created a whirlwind through my car, and gotten so angry that I started throwing things and screaming.

I made myself stop looking for the stupid thing. It feels like a fishhook in the back of my mind though and I want to start looking for it again. But I am still sweaty and shaky for my previous search. I do not handle frustration very well. I never have. When things do not go the way I want them to I seem to transform into a petulant child, insistent upon having my way come hell or high water. I have seen this behavior in autistic children whom I have worked with, in children and adults with ADHD, in people with no diagnosis at all, and every child I have ever met. With children with autism this behavior is sometimes refered to as ‘an autistic tantrum’.

But this is where I’d like to break things down a bit. Tantrum? If a favorite object or comfort item cannot be found an autistic child may very well have a meltdown. So might a child without autism. And why does this happen? The answer is simple. Fear.

When something that is usually very accessible in your environment is suddenly gone of course the response is fear. What is that item is gone forever? What if someone took it? Will it ever come back? Children, in general, thrive on consistency. They are too small to answer these questions themselves and are too small sometimes to understand that even if something is gone right now it may (and usually is) always found later.

Expectations are violated and no one likes that. Adults throw hissy fits in stores if the item they want isn’t there. They went to the store with the intent to buy this thing and now the thing is not available.  Expectation violated. Hopefully most adults can take this in stride and move on but having worked in retail before a large part of the adult population cannot. They scream at waiters, servers, register monkeys, and everyone they can trying to get their way. This behavior is unacceptable.

But here’s the dilly and the sweets. People with autism have, by the very definition of their diagnosis, dependence upon on sameness. I thrive on consistency. I hate and fear change. Why? Because expectations are violated. When the world around me does not act in the manner that I expect it to (my wallet being easy to find) I do not know what to do. The world suddenly makes no sense. Everything is wrong. Nothing is right. Anything could happen! If my wallet can disappear then the couch can spontaneously turn into spaghetti and my dog could teleport to a new family in Canada. (Country chosen at random, no hard feelings right Canada? You guys are so nice there.)

Now logically I know these things won’t happen. My wallet will turn up. I can ask for help looking for it. The world will not end. My dog will not teleport to Canada (if she did her new family would automatically love her cause she’s so cute). But when you depend on sameness to keep both our inner and outer world in check anything that rocks the boat is a horrifying reminder that anything could happen at anytime. The living room furniture being rearranged doesn’t really bother me. Its that things are different. Now the living room is no longer the living room. It is living room 2.0 and I will have to learn how to navigate it. I will bump into things. I will not like sitting someplace different because it changes how the TV sounds, if I get enough air from the air vents and fan to stay cool, where the dogs are going to chose to lay down. Integrating the new living room isn’t easy for me. I can and will do it. But I don’t and won’t like it.

And that is because I am afraid. I have a voice, the Imp maybe, yammering away in my head that this is bad, this is new, this isn’t what it used to be. It will never be the same, it will never be what it was, it will never be home. If the world outside me changes the world inside me is forced to change too. And the world inside me is very resistant. The world inside me that I have carefully built is what helps me navigate and understand the world outside of me.

The inner world of most people seems more resilient to change. But for those with autism even expected change is difficult, frightening, and exhausting. If we meltdown or breakdown because of this we are not petulant, we are not having a tantrum, we are not being willful.

We are scared. So very, very scared. Scared that the world will never be as it is. And exhausted all ready at the idea of learning this new world and making it a part of our inner world. I have the ability to express myself in words through both speaking and writing. I have an IQ that allows me to use logic to help me get past these moments. But right now I am still thinking about my wallet and I am still very angry at it for not being where it should be.

Side note: I found my wallet. I dropped it at the grocery store and a very nice person turned it in. Thank you nice person!