The Aftermath of Being Bullied in Public

I shared the tale of two grown women giggling and calling me a retard because I was flapping my hands and rocking in a craft store on my personal Facebook page and in person to a mental health care provider who is part of a team that works with me. I told this story to others because I am concerned about the effects Trump, who openly mocked a disabled reporter on camera, is going to have on the daily lives of the disabled and how his behavior encourages disrespect and hatred.

The responses I got were both thoroughly underwhelming and deeply distressing.
On Facebook a person I went to high school with but haven’t spoken to in over fifteen years told me to stay positive and not let those people influence me. I made the decision to make the post public because I felt it was an important issue. Someone I don’t know replied “Get the facts – Trump never mocked a disabled person! The pro-abort crowd wants the disabled to be aborted!” This person either doesn’t know or doesn’t care what pro choice people stand for. She seems to think pro choice is the same as eugenics. I refuted her claim about Trump’s behavior with a link to a video of his offensive behavior. She claimed his behavior was “taken out of context”.

I was bothered by these posts more than I was bothered by the actual incident. Not one person said that those women were wrong and hateful. I was having some trouble with my insomnia around the same time as the post and thought that this situation was effecting me more than I realized. So when I had an appointment with a member of my care team I related the story to her. I am the first autistic adult she has worked with and she always asks insightful, honest questions when she doesn’t understand how autism impacts my daily life and behaviors. She asked why I rock and flap. I explained that stimming helps me calm down when overwhelmed and can help provide mental clarity and plays a role in warding off a sensory meltdown.

She made some notes on in my chart and asked “You are aware you do this?”

Of course I am. Sometimes I will being to stim without consciously being aware of it but oftentimes I chose to stim to help myself calm down and feel better. Sometimes I do it just because I like the way it feels.

“If you stop doing it in public people won’t stay these things.”

Her response hurt more than what those women did in the store and the replies on Facebook. I felt a multitude of emotions. Shame, embarrassment, anger, betrayal, and a familiar achingly deep sadness. Here was someone in the mental health field highlighting the gulf that exists between me and neurotypical people. The gulf that will always exist. The gulf I first acutely felt when I was ten years old.

I shared this event in my life because I was concerned about the treatment of peoples with disabilities in this country. At no point did anyone tell me that this was horrible, that those women were horrible, that no one should act the way they did. No one said that their actions were reprehensible. No one stood up for me. Instead, I was told to stay positive, to not let it bother me. Worse, I experienced victim blaming. If I just change myself no one will say horrible things about me. I was bullied and it was my fault. No one even stated the very obvious, that I am not a retard.

I will not change. I will stim whenever and wherever I need or want to. I will not believe that the actions of others are my fault. I have spent too much of my life blaming myself for being bullied. I am not the problem. Two grown women who think they can call someone a retard are the problem. People who do not stand up or even voice support for my right to exist peacefully in society are the problem. Bullies and thugs and those full of hate are the problem. I was verbally attacked and it seems that it matters very little. Fortunately, I have people close to me who love me and were outraged for me. They accept me for who I am.

People often don’t understand why going out in public is so hard for me. The fact that I can and have been verbally attacked for being who I am is enough to make anyone want to stay safe at home.

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?

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*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.