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.

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!

Feelings

I’ve been having a lot of feelings lately. And I don’t like it. I haven’t always had feelings. Or at the very least the ones I had weren’t very complicated or intense. It wasn’t until I was 13 or 14 that I realized people had feelings. I had always assumed that everyone was empty like me. I started to suddenly experience emotions around the age of sixteen. I’m not a neurologist but I assume emotions just don’t suddenly turn on like a light bulb. But mostly I just remember psychosomatic reactions instead of feelings previous to this emotional awakening. I didn’t feel angry, my stomach hurt. I wasn’t frustrated, I had a headache. I wasn’t scared, I had diarrhea. Then emotions came on strong around the time I had more than one friend who had more than one friend. I remember feeling like everyone else’s friendships had something that they didn’t have with me. I was dismayed and jealous and confused but couldn’t logic it out so I just put the whole subject in the bin. Then I went into my first major depressive episode and my emotions went away again.

My second major depressive episode is in remission and I have been depression free for nearly 14 months. I’ve had a lot of feelings in that span of time and they are exhausting. I can’t understand how people function with emotions all the time. How are they even still alive? Most of the time I wish I didn’t have emotions. Or that I wasn’t as aware of them. I’m more aware of my emotions now than I have ever been but I understand them no better than I did when I was a teenager. I’m 31 years old and I don’t know what to do when I’m sad, or lonley, or anxious. Most of the time I don’t even know why I’m experiencing any of those things.

Generally, R has always told me what I’m feeling and what I should do about it. She’s been doing this since we were teens. In return I’ve always redirected her when her ADHD leads her stray. R has grown as person and is a wife and mother and I’m a 31 year old with the emotional intelligence of a second grader. Before R had kids I’d go to her, say something like “I feel bad”, and boom! R does her emotional magic. She’d figure out what I was feeling, some possible reasons for that feeling(s), and some functional plans to help me process the feeling(s) and move on. Rarely was she ever wrong. Maybe because we’ve known each other for so long (and in no small part because we were both more than willing to be in a codependent relationship) R usually figures out fairly quickly what’s going on with me emotionally. She does it (I think) by taking my emotions and making them her own and I know that’s not healthy for either of us. It was just easy and it made sense.

But R has kids now and neither of us wants to our relationship to be codependent again. She can’t be my emotional Sherlock Holmes cause she needs to be teaching her 2 year old daughter how to deal with her feelings and not her 31 year old autistic friend. I don’t want to be a burden to her anymore than I can help so I’m stuck with my own stupid emotions and I hate them. I want them to jump back into whatever Pandora’s box I unwittingly let them out of and leave me the hell alone. And, contrary to popular media portrayal, the medications I take don’t medicate my emotions away. They just get rid of the self destructive extremes.

And to make things more complicated I have emotions about my emotions. I’m afraid to feel any level of sadness because for me sadness only comes in one flavor: depression. So I’m afraid to feel sad but then I feel stupid for being afraid because my 2 year old goddaughter can handle being sad. Then I feel like I should accept how I feel because my feelings are valid dammit and eventually the noise in my head becomes so loud I start to have a panic attack. Then I take my medication and hide in my room with the lights off for several hours, willing my heart rate to go back to something that feels like it won’t kill me. And I still have the psychosomatic reactions too. Fevers, blinding headaches, blurred vision, selective mutism, stomach cramps and pains, heart burn, hives, vomiting, diarrhea, and asthmatic attacks. They resolve and/or can be medicated away but the core problem remains.

I don’t know what to do with my feels. My culture and family have taught me to medicate my feelings with food. Its hardly a surprise that as I’ve become more aware of my feelings my weight has steadily increased. i found myself finally able to verbally articulate this dilemma (my mouth is a notorious traitor) during the dying embers of my disastrous attempt at graduate school. I told all of this to the head of the psychological services center, a psychologist with over 30 years experience and more research papers to his name than any person should physically be able to write. With my file in his lap, he looked at me over the rims of his glasses (me red faced and sucking on my rescue inhaler) and intoned, “Wow. It sounds like you have some kind of emotional disorder. Have you tried Zoloft?”

I think filling out the mountains of paperwork required and going to his office reaching out for help was my last desperate attempt to salvage my graduate school education. He was unmoved and I guess I gave up. Agoraphobia became queen of the kingdom and I lost my financial aid, my job, and finally my apartment. (Side note: I’m not sure why agoraphobia is female but it/she is.) Because of course I had been on Zoloft. It was in the file he was holding on his lap. The file he was supposed to have read. I loved Zoloft. i was at my most functional on Zoloft. I graduated college with the help of Zoloft. But it stopped working as those kinds of drugs sometimes do.

But I didn’t really give up, I don’t think. I just ran out of resources to give. Everything kept taking form me and I had nothing left to give. So I slipped back into hypersomnia, selective mutism, and eventually depression held sway over all. The winter of my discontent came and my feelings went into hibernation.

It is now the summer of my mental state and my emotions are ready to run amok. They’re like undergrads in Cancun, drunk on their own sense of importance and always read to overreact.

Today’s emotional overreaction: self hatred.

Why?

Because I couldn’t go to lunch at a restaurant. The thought of it made me have a panic attack and I stayed home. Not a new scenario for me. It happens fairly often. I don’t like loud, noisy, crowded places. I know this, R knows this, and anyone who will listen knows this. Its my thing. But today it is making me hate myself. I can’t do something as simple and commonplace as have lunch in a restaurant. What the hell is wrong with me?

Stupid, pointless, useless emotions.