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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The Three Whys (of my autism)

Why do I have autism? When I was diagnosed I never asked myself that question. From what I knew about autism (and what I’ve learned since) the cause of autism is partial genetics and mostly still unknown. It is a neurobiological disorder that definitely has a genetic component but what that component is exactly isn’t known. Studies have found anatomical differences in the brains of some individuals with autism but by no means all people with autism. Brain scans have found differences in the way the brain of an individual with autism reacts to certain stimuli but this is a correlation. Causation is not found in any of these studies. Like any disorder that effects the mind the why of autism is bound to be incredibly complex. I am the only person in my large immediate family with a diagnosis of autism but I am not the only one to display autistic characteristics. Looking at my family objectively, I can identify traits of autism in my father, two of my brothers, and two of my great aunts (my Dad’s aunts). My father grew up in a generation where a diagnosis would only have been made for someone with a very profound mental disability. Someone like my Dad who was successful in school and never a behavioral problem wouldn’t have drawn attention. My brothers were probably never identified for the same reasons. They both had excellent grades and never caused any problems. Both of my great aunts come from a background of profound poverty. Neither of them went beyond junior high and when they were young the most profoundly disabled were hidden away and forgotten about. The elder of my great aunts was born in 1922. We’d come a long way by the time I began attending school in the 1990’s.

I got good grades in school but I caused a lot of problems. I had a pathological need for routine and sameness. Any deviation from the norm lead me into a spiral of panic and anger. I had psychical and verbal stims. I still do but trial and error has taught me when and where not to engage in them. I have sensory issues. Certain things, like sand, are intolerable to touch for me. Touching denim is worse than having teeth pulled. I see the rapid flickering in florescent lights that some do not. I can also here the constant buzz all florescent lights make. I can’t not hear it. I’m sensitive to change in temperature. My  kindergarten teacher described me as “aloof; distant; struggles with social skills”. In the first grade I was referred to the school counselor. A report she gave my parents states that I had an “odd manner of speech”. I was “socially immature, inflexible, and naive”. My speech was so delayed that my Mom took me to the pediatrician. He assured her that I was fine and need to be encouraged to talk more. So many, many signs.

So why was I not diagnosed until my 20’s? Part of the reason is that Asperger’s Syndrome wasn’t recognized as a diagnosis in the United States until 1994. I was ten years old by then. Another part was the fact that, like ADHD, autism was a boy’s disorder. Girls with autism were extremely rare and displayed severe intellectual disability and most often engaged in dangerous self injurious behavior. I was reading at a college level in the third grade and kept my mild SIB a secret. One of my earliest memories is my Mom telling me that she never knew when I was happy because I never smiled. So, being logical and practical, I practiced smiling in front of a mirror and reminded myself to smile whenever someone around me smiled. Everyone loves a smile. Basically I learned to adapt. I loved to read and always made sure to have a book with me at all times. If you’re reading people rarely interrupt you. If people didn’t interrupt me then I wouldn’t have to struggle with social situations. When you’re a girl who is very quiet everyone seems to see you as very polite. I couldn’t upset anyone by saying something bizarre or rude if I never spoke. I knew that I was different and that something about me was very, very “wrong”. So I learned to hide it. I compensated. I did my best not to stick out. My grandmother drilled into me how to speak politely to an adult and I used that script, improving on it when necessary. If I daydreamed in class, well, that was hardly a problem with my grades.

So that leaves the third why. Why me? I’ve never asked myself that question either. When I was diagnosed I was incredibly happy. Finally a name for and a description of this thing I had always known was there. I was autistic from my very beginning. From the womb to the tomb, yo. I have never not been autistic. I have had parents ask me “Why my child?” My immediate, but never spoken, answer is “Doesn’t matter.” To me it truly doesn’t and I find it hard to understand why it would. If a child is nonverbal, aggressive, and/or engages in dangerous behaviors like elopement or severe self injury I guess a parent would want an answer more concrete than “genetics…mostly.” I will never be a parent because I know that I lack the capacity to be a competent one so I guess I’ll never be in the position to ask that question. There was never a time in which I have not been autistic. It was no surprise to me and my diagnosis caused me no pain and much joy. But I lived with my autism for 21 years. The only thing that had changed for me was this thing had a name. I do want to understand though. When I work with a child with autism I am working with their family too. If any parents read this I’d love to hear from you.