Where Do We Go From Here?

When I encounter new doctors (medical, mental health, etc.) the first question I’m asked after the disclosure of my mental health history is “What is the date of your last hospitalization for mental illness?” I have never been hospitalized due to my various mental illness. Every health care worker I have told this too has the same response. They pause, look up from my chart, and say something along the lines of “Really? Lucky  you.”

I guess it is lucky that I’ve never been hospitalized for mental reasons but that’s a really low bar for “lucky”. I know a lot of people are less fortunate than me and I am lucky in that regard. But it isn’t as if my mental health doesn’t have deep consequences for my daily life. I’m 32 years old. Its been two years since I held a job. The longest I ever held a job was four years when I worked on campus while in college.  My college was very small and very sheltering. Had I gone to a larger school in a larger town I doubt very highly that I would have graduated. There are many barriers in my life that keep me from holding a regular job but the biggest one is my ability to be at my job on a regular basis.

Some mornings I wake up and can’t get out of bed because I hate myself so much I start to contemplate suicide. Some mornings I’ve woken up so scared of some ominous threat that my brain convinces me is real I cannot leave my house. Sometimes I’m so overwhelmed with various sensory challenges that I can’t process what I’m seeing, can’t understand what I’m hearing, and/or cannot speak. How can anyone be expected to stand behind a register and smile for eight hours when their brain is bombarding them with the idea that they would be better off dead? How can I stock clothing in a store when that seemingly simple task is a game of sensory Russian roulette? How do you even explain that to someone?

“I cannot touch denim because of my autism.”

Well that’s a basic function of the job and not exactly covered by FMLA or other laws. Even diseases like asthma that are covered by FMLA aren’t always covered by FMLA. There are days I literally cannot go outside because it will inhibit my ability to breath. Walking from my house to my car or my car to my job could in fact kill me. These days are not all that common but if the city declares an air quality alert day I cannot go outside. The state is telling people who are sensitive to avoid going outside and that’s me. Its not because I want to be because if there were a magic pill to just make asthma go away I’d do whatever it took to get one. Being able to drown on dry land isn’t exactly a super power. If the pollen and mold counts are too high my asthma shuts off breathing and makes my nose bleed copiously. Imagine having someone ringing up your groceries who is gasping like a fish and actively bleeding. You wouldn’t want that person near your food. Your job would send you home. But you are penalized for it. I once had to call out from work because I was so convinced that the overpass would fall out from under me when I was driving that I had to take so much anti-anxiety medication I wasn’t safe to be behind the wheel of the car.

I have atypical depression that is very resistant to treatment and even when a treatment is working there will be days that it doesn’t. I have generalized anxiety disorder, panic disorder, and obsessive compulsive disorder with chronic intrusive thoughts. I have IBS and at any point my guts will rebel against me. I may be on the toilet for 30 minutes with a 15 minute break between extreme bouts of intestinal cramping and diarrhea. Anyone with IBS-D knows there isn’t any treatment that works. When an attack starts I am simply along for the ride. At the end of this ride is exhaustion, pain, and dehydration. I have asthma. I suffer from unpredictable insomnia. I go to bed at a reasonable hour but I’m still awake at four AM. If I have to leave for a shift at 6am that’s barely two hours of sleep if I even manage to fall asleep. If not I’m going to be working in a complete daze because I cannot function without at least 5 hours of sleep every night. If I get less sleep than that it often triggers my IBS for reasons no one understands. I suffer from chronic headaches that don’t respond to treatment very well. They aren’t traditional migraines but its hard to function when your head feels likes its gone rotten and is ready to split open. I have chronic pain in my joints, particularly in my knees. The medication that helps with the pain renders me unable to operate heavy machinery or even stand without wobbling. I basically act as if I’m drunk and you can’t do that on the job for very long even when the medication you’re taking is legally prescribed to you. I suffer from chronic fatigue. My doctor is currently trying to figure out if I have an autoimmune disorder. So there’s days off for various doctor’s appointments in addition to my appointments with my mental health care team that literally take all day long. And then there’s always my autism which makes dealing with the public very difficult. Retail shops are such sensory nightmares that I can’t even do my own shopping. How can I possibly work in such a place for up to eight hours a day?

So, this is where I’m at. My car broke down completely in December of last year but I’ve been out of work for two years so there’s no money to even buy a junker. I have so many barriers that “normal” employment seems impossible. I would love to go back to school at get a degree in Library Science so I could be a librarian but I need money for school and then I’d have to be able to be at work and not calling out all the time. I’m 32 years old and looking at getting disability benefits because I cannot function normally in society. But I have an above average IQ so even workshops that exist to give people with disabilities a place to work are not an option for me. No one understand what an adult with autism needs or who to help them gain employment.

There is a void ahead of me in which  I am simply incapable of existing in “normal” society and living a “normal” life with a “normal” job. Or even any job at all.

So where do we go from here?

wp-1488067331595.jpg

*screenshot taken from the manga “3-gatsu no Lion”. I claim no ownership.

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.

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.

In the Future I will Be

My stupid words bypassed the usually very good filter between my brain and my mouth today and I ended up unintentionally saying something uselessly cruel to R. We talked it through and things are fine between us and I’m glad.

But I also hate myself.

My words have hurt people before. Its a literal hallmark of Asperger’s Syndrome. I say things and people have emotional reactions to them that I did not intend to create nor do I understand and sometimes can’t even correct. I’ve been told by more than one person on more than one occasion that I am “cold, cruel, unfeeling” when I had no idea why they would think that of me.

The only thing I absolutely hate about being autistic is communication failures. It seems so easy for other people to talk to and understand each other. I see it happen every day. I know that there are miscommunications all the time but it seems so easy for others to say what they mean. I have a hard time understanding people some times and I’m okay with that. Its a part my autism and I can deal. If people think I’m stupid or a bit slow because I need them to repeat themselves several times that’s okay. If they get annoyed with me for needing specific written instructions that’s just a little stone life lobs at me. When I say something and people look at me like I’m from another planet well its something I can live with. If I have to rephrase myself several times before people understand me well enough to get the gist I’m all right. Its a pain but it can be done. And if all spoken communication fails then I can always write it down. I’m much better on the page than I am in person. Emails and text messages are great for that.

What I can’t stand is that my words hurt the people that I care about. I relax around them because I trust them and feel comfortable with them. This results in my careful brain-to-mouth filters relaxing too. Most of the time nothing happens but some times something from my brain makes it through my mouth unfiltered. Maybe I said something wrong and/or maybe the other person interpreted it wrong. Maybe I said something that sounded mean but had no malicious intent. It doesn’t really matter. Because now I’m in a hurricane of emotion. The people that I’m close to know me and we work it out just fine in the end because we both want to put the effort into our relationship. They know me. They give me a chance to explain, to rephrase, to qualify. And we patch it up like always.

But then comes the memories. Those from before I knew what it was that I was hurting people with. Before I realized how it could even happen or that my words had any effect on others at all. It reminds me of all the friends that suddenly wouldn’t talk to me anymore because I was mean. It takes me back to never having a partner for group projects cause the other kids didn’t like me. And sitting at the end of the lunch table with a group of kids huddled away from me because they didn’t want me to feel I could join in.

When was I mean? How was I mean? I wasn’t mean….right?

But its hard for someone to understand that you literally have no idea how what you said effected them. We are a wordy species. The ability to communicate is the hallmark of homo sapiens. The pinnacle of our evolution. To fail at it so utterly is to be in effect inhuman. To be unhuman. To be alien. And if you don’t know you’re autistic, like I didn’t back then, then what are you? Where did you come from? Why are you here? Is it always going to be like this?

I randomly found an old school assignment in some boxes when my family moved house several years back. Some of them were mine. One was a paper that listened goals, dreams, hopes, etc we had for the future. From the date I figured out that the assignment was from the end of my 3rd grade year. The very last statement was “In the future I will be” followed by a blank spot. I had written “a doctor”. But my first response, which I had erased, was still barely visible. I wouldn’t have noticed it if I hadn’t been sitting so close to an intense light source. I could see my first response. And it speaks to the fact that at the age of eight I understood what I didn’t understand. My response spoke to my understanding of what my future was going to hold. It spoke to the fact that I knew was fundamentally faulty in some manner than I could neither grasp, understand, or fix. To a loneliness I was too young to feel in its entirety and a hint of the bitterness and contempt that I would later feel toward others. It spoke to the long road ahead that has left me pitted and scared and with a hatred for myself that I now, thankfully, rarely feel.

My original reponse was “alone”.

“In the future I will be alone”.

Socalizing

Everyone has their strengths and weakness. With me the things I’m good at I’m spooky good at. The things I’m bad at I’m miserably bad at. There is no in-between or gray area when it comes to my skills. It is black or white. This is very common in pervasive developmental disorders and was one of the defining characteristics in testing that would lead to my diagnosis.

I’m good with technology. My dad has fixed computers for years and I used to hang around him, picking up knowledge. Computers are fun and exciting. All those pieces put together and you can play a game that takes you to another world or talk to someone on the other side of this world. When I lived in the dorms the other girls would bring me their laptops whenever something went wrong. I’d charge a minimal fee or trade for the kinds of things you want in a dorm (toilet paper, non-cafeteria food, laundry detergent, dryer sheets, quarters of the washer and dryer, etc). All the girls knew who to come to for technological help but I didn’t make a single friend. Despite the fact that people were often coming by my room I didn’t learn anything about them. And I had  no idea why. I wasn’t surprised by this failure. I was pretty used to it actually. Social reject began as early as kindergarten for me. I have two friends these days. One I’ve known since junior high and the other I met my second semester in college. I had more friends in high school but once we scattered after graduation I lost them. Without the commonality of being at the same school and in the same classes I just didn’t know how to keep a friendship going.

It wasn’t until I had spent a very lonely three months far from home that I asked my childhood friend, R, about my social failures. She said that I seemed rude, dismissive, and short with people. She said I seemed disinterested and would say odd, sometimes bizarre things. She said I never made eye contact. I was closed off and emotionally distant. She knew I wasn’t really uninterested and that I did care deeply but it took a lot of work/time/proximity to get the real me. In other words, I was a hard nut to crack. Also, I spent so much time alone in my room reading and playing video games. How was I supposed to make friends if I was never around people?

So I decided I was going to try. I started eating my cafeteria dinner in the dorm common room when I knew other girls would gather as a group to watch a particular show on the common TV. I knew nothing about the show and thought that asking questions about it would be a good way to get a conversation going. I listened intently as the other girls explained the characters and plot lines. They seemed to enjoy teaching me the ins and outs of the program. I made sure to smile a lot and look at people’s faces (not the eyes though) to show I was paying attention. The show was Project Runway which consisted mainly of one thing I hate (interpersonal drama) and one thing that bores me to the point of drooling (fashion). So maybe I needed to find a group that watched a show I was interested in. I like procedural cop shows (Law and Order), documentaries, cooking shows, horror films, and anime.

When I learned another group of girls met informally on a different night to watch Supernatural I thought, “Yes! These are my people.” But even then I simply couldn’t seem to connect with anyone. That barrier (that same old social barrier) was between me and them. I didn’t know how to break through it. I never knew what it was I should say, when I should say it, or how to keep a conversation going. Beyond my socializing problems, the sounds of the TV, the sounds of chatter, the florescent lights in the common room, and the mingling smells of food and perfume were too much for me. Eventually I just stopped going to join the others. I had never had much success socially (at school or my job) and it seemed like college was going to more of the same.