My first break

The more I learn about the nature of mental illness and the many different shapes the same disease takes the more I realize I’ve been waltzing with depression longer than I ever knew. The very fact that I was never particularly surprised when different conditions showed themselves is very telling.

I’ve worn glasses everyday of my life since I was ten. I cannot survive without them. I’ve never lost or broken a pair for two simple reasons. 1: I can’t function without them. I cannot read, see a television screen, or walk without risking injury. 2: I have never had enough money to replace a pair should some thing happen to them. Insurance pays their part only once a year. My astigmatism has only become worse with time and my lenses are ridiculously expensive.

Children are highly adaptable. My glasses were has much a part of my life as my eyes and so I protected them just the same. There were never arguments to put them on. My parents never had to question where my glasses were or search them out. If I wanted to read I had to have my glasses. And I want to read more than my next breath.

So when depression sat itself down in my life with all due authority, I accepted it as easily as I would accept my glasses a few years later. For a long time I thought depression had manifested in my early teens. But the depression of my early teen years was just the same monster, wearing a new face.

My first major depressive episode began when I was six. It lasted roughly three years. OCD showed up at the same time. The event that triggered it began with my cousin Jonathan. I was five when he was born. He was the first child of my father’s only sibling. At the time Jonathan was born my Uncle D and Aunt L lived with my paternal Grandmother. If we weren’t in school my siblings and I were at our Grandmother’s.

I don’t remember anything leading up to Jonathan’s birth. He was there one day and that was fine. But then he wasn’t there anymore. He was there when my dad took us home in the evening. The next day, after school had ended, Jonathan was not there. The house was full of lit religious candles and silence. My Grandmother whispered to herself in Spanish, black beaded rosary clenched in her fist. The banner welcoming Jonathan home was gone.

I asked my Great Aunt one quiet question “What happened?”

“Baby Jonathon has gone to Heaven with Jesus.”

Another question “Why?”

“Voluntad de Dios,” she whispered. “Shush.”

Aunt L disappeared too and I have never seen her again. My mother and my Great Aunt sternly told me to be quiet and not ask questions. So I mirrored my older sister’s behavior and things gradually went back to normal. My Uncle moved into his own place and bought a giant black Harley that terrified me.

I was nearing the end of my kindergarten year when one morning sitting in class a thought arched across my mind like lightening. ‘Baby Jonathan!’ He was born and died in early fall. It was nearing summer. I accepted his death the way children sometimes do, easily and without much distress.

“God’s will,” my Aunty had told me. I never questioned her assertion because her belief was absolute. It was honest and fair. Good or bad it was all God’s will and that sat with me quite nicely. To this day I don’t know why his name suddenly came to me but it opened a door in my mind that led to a deep, unknown place.

No one ever said his name. There were no pictures. His mother was gone. His things were gone. He’d had a crib. Gone. A blanket. Gone. Toys. Gone. A name. Nearly gone.

His face. His face! His face? His face was gone, gone, gone.

The more I tried to remember the greater the darkness grew. My Uncle never laughed when he came over anymore. He rode that giant Harley beast without a helmet. He smoked in my Grandmother’s house. He didn’t look at us kids anymore.

I squinted, I held my breath, I pressed on my eyes until they hurt. His face would not come to me. Baby Jonathan had been erased. He’d gone up to Heaven; voluntad de Dios. But it was my family that erased him. His things were gone, his mother gone, and no one spoke his name. Not even a year had passed and he was utterly, completely erased. Not by God’s will but by the will of his own family!

But I had a hope. His birthday. We would celebrate his birthday! Christ had died and gone to Heaven and we celebrated His birthday every single year. Why would Baby Jonathan be different? School ended and started again. First grade and I couldn’t remember Jonathan’s birthday but I knew my Grandmother did. It was before my birthday. But my birthday and Jesus’ birthday passed. A birthday banner for both of us. Cake too. But no mention of Baby Jonathan.

I went into that room that had opened in my mind. It had been dark and empty before. Now it was occupied. A table, two chairs, and it of course. The Pale Rider seated at the table. Its pale horse waited quietly nearby. It was a plague in the Bible. I often went to that dim room and sat with the Pale Rider. I would scream and rage and demand it give me back my cousin’s face. My family had given it to the Pale Rider but I was Jonathan’s family too. I should be able to take it back. He belonged to us! I wouldn’t allow him to be erased. But the Pale Rider never spoke. It would smile sometimes and that’s when the darkness was the worst.

My cousin died of SIDS. He lived for less than a week. He was buried in our mutual hometown. His things were taken away by family friends. Some were blessed and given away. Most were destroyed. My Uncle D and Aunt L divorced quietly. I stared seeing the school counselor after Christmas break. The school had been put on alert of course. The counselor was a kind woman but she didn’t recognize what was happening to me. I doubt many would. I was a six year old in the midst of a major depressive episode with psychotic features brought on not by my cousin’s death but his erasure.

I was utterly convinced that if I looked in the correct book Jonathan’s pictures would be there. How to find that book was given in coded messages in other books. Certain sentences would stick in my mind and these would become the clues I needed to decode and then follow. Certain numbers were special. Certain names important. I fixated. I ruminated. I watched for important signs. I sat at that table with the Pale Rider. I learned to be mentally still. I learned how to keep the Pale Rider from smiling. One day, I left that room and closed the door. I didn’t go back in there for many years. I don’t know how or why that depressive episode ended.

God’s will, I suppose.

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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 understands what an adult with autism needs or how 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.

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!

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”.

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.

Be not afraid

Got a call from my Mum today. She has this way of telling me bad news. She asks how I’ve been, listens, and sighs heavily when I finish. That’s how I know its going to be bad news. I don’t often pick up on social/emotional ques but Mum is a creature of habit (like the rest of my family). Its nice (in a way) to know that bad news is coming before its said.

My grandmother has (probably) less than a year to live. She’s 85 years old and for the last ten years or so her health has been failing. Its only been in the last five years that she’s begun to actively die. It started with a heart attack that led to a stroke that lead to her losing sight in one eye and experience full body muscle weakness. She has low blood pressure and osteoporosis. The osteoporosis leads to abnormally high levels of calcium in her blood which is not just bad for her bones but also her heart. Three years ago she was diagnosed with a kind of cancer of the blood. The only way she will ever be cancer free is if she has a bone marrow transplant but she wouldn’t survive such a harsh procedure. Her heart muscles are atrophied and her heart is actively leaking blood. A pace maker could be put in but it would only stop sudden cardiac arrest. It wouldn’t really solve any problems. It might extend her life but no one can say for sure. She doesn’t want to have the surgery and I respect her decision.

My grandmother has been a fixture in my life since the day I was born. I was very jaundiced at birth and had to be put in a light box immediately. No one could hold me. My grandma prayed and sang to me. Both my parents worked long hours and if me and my siblings weren’t at school we were at my grandmother’s house. When we’re sick she gives us Sprite and eggs and refried beans. Tortillas were her specialty. Her tamales were a Christmas treat I looked forward to all year. Spanish rice, picadillo, and conchas overflowed at her house. She’d bring home a peppermint for each of us when she came home from work. She never forgot and she never miscounted. She was the first person in my life to respect my food sensitivities. She’d make my portion without onions. It took a few minutes more but it wasn’t a burden for her. She knew what I liked to eat. She would challenge me to try new things.

“Try a bite mijita,” she would instruct. “If you don’t like it I make you some eggs.”

Sometimes I liked it. Sometimes she’d make me eggs. She never got mad at me for being a “picky eater”. As long as I tried and didn’t waste food in her house everything was okay with her. As long as I was eating I was healthy.

“Jita,” she would say. “Don’t shake your hands at the table. You’ll get food on the floor.”

No yelling about quiet hands. Just a direction and a very logical reason for it.

“Jita,” she would say. “You need to listen at school. You need a high school diploma to go to college and I want to see you walk the stage.”

I was still mad at my teachers and confused by my classmates but Grandma wanted to see me on my special day. So I learned to put up with it.

“Mijita, when others are mean to you show them your beautiful smile,” she instructed.”They want you to be mad or sad. If you smile you confuse them. Then you come tell Grandma about your hurt.”

And it worked. Bullies stop picking on you if you just don’t care. I would tell Grandma if I was hurt or mad at their words. And it would be okay because Grandma loves me. And Grandma would always love me. There are so many of us (me and my siblings) but she had a way of talking to you that made you feel like you were the only one in the world. Because to her, you were. There was no other granddaughter like me and she thanked God for me every day. My birthday is in December but she would always buy me two presents. Because my birthday was as special as everyone else. Sometimes she would buy me a small one person cake. it would have reindeer and Christmas trees on top. It was my little cake. Just for me. Only for me. And she always remembered my favorite was chocolate.

When I left for college she was sad and scared. But she smiled and cheered me on. I was going to get my degree, the first in my family. She prayed to Jesus that my “school mind” would be open and that the library would be too. The first time I came home from university I went to visit her as usual. She looked so much smaller than I remember. So much weaker, so much sicker. For the first time I realized that my grandmother was going to die. That one day she simply wouldn’t be there anymore. I was so sick with the knowledge that I could hardly stand to look at her. My grandmother had been strong her entire life. She raised her sons alone after my good-for-nothing grandfather abandoned his family. In a time when women had no voice she and her sister worked menial jobs to buy their own home. Any obstacle could be overcome with hard work. Everyone had a skill that was special and could be used. Everyone’s life was important because they are a child of God.

She is a very, very religious woman, my grandma. Pious and as true a believer as there ever was. But her belief was never a weapon. She never tried to put the “fear of God” into any of us. Not even the time I nearly burned her house down. She just reminded us that God loved us. She wanted us all to be Catholics but she loved us no less if we never joined the church. She prayed her rosary quietly while we would nap when we were young. She thanked God for each of us by name. We were the sum of all her prayers, her reward for faithfulness, and proof, if only to her, of the loving God she leaned upon.

I joined the Catholic church in my early twenties. It is a fact that surprises many as I am generally logical and rational and religious beliefs tend not to be. Grandma brought me to the church. I saw the peace and joy it brought her. I saw the comfort religious beliefs could bring. I hoped to find that for myself and I very much did. My faith wavers often but that is just the nature of the thing.

My grandmother faces death with a serene smile. She is comforted by the love of God and His promise. She has lived all her life to be able to go home to His Kingdom and knows that the family members who have gone before her wait for her there.

I want her to go there. I know that she is tired of being in pain and she is tired of being sick. She is tried of hospitals and doctors and needles and pills. I want her to be at peace. Much of who I am today is because of her. Much of the peace I find in my life is because she so patiently taught me how to get there. She has always accepted me exactly for who I am. I have never been strange or weird or tiring to her. I have always been her Janna and I always will be.

I just really, really wish she could stay here with me always. Because I’m not done needing her to remind me that I’m perfect and wonderful and that I am a precious gift from God. I’m not done being her granddaughter. I don’t want her to go. But I know she’ll be waiting for me.