Violence Lies

"What does it profit, my brethren, if someone says he has faith but does not have works? Can faith save him? If a brother or sister is naked and destitute of daily food, and one of you says to them, “Depart in peace, be warmed and filled,” but you do not give them the things which are needed for the body, what does it profit? Thus also faith by itself, if it does not have works, is dead."

- James 2:14-17

faith without works is dead. peoples children are dead. childrens mothers and fathers are dead. brothers, sisters, grandparents, nieces, nephews, students are dead. teachers are dead. husbands and wives and boyfriends and girlfriends and friends are dead. and your prayers aren't doing anything to help them. your prayers make you feel good, they make you feel like you've done something when you pray or you share an image on facebook or you discuss your outrage on your lunch break and sadly shake your head saying, "what a tragedy."

it is a tragedy. children are dead. every single person laying in the morgue or a cemetery today was someone's child--including the people who killed the rest of them. we talk about gun control and freedom and fear and terrorism, and we debate and take sides and politicize all of it, and somehow in all the conversation that takes place nothing ever happens. the hate continues, the violence continues, the tragedy continues, and whether its the queer community or an elementary school or a movie theater, the motive is the same. it's hate. someone has to hate to do something so awful. and we can't wrap our heads around it, and so the people who commit these awful crimes are demonized. "they're not even human." but you know what? they ARE human. they're someone's child, too. and if i can steal a few words from jed bartlet, who has something to say for all of these unimaginable horrors, they weren't born wanting to do this.

these shooters, these murderers, these rapists and gangbangers and terrorists were not born wanting to do these things. they were born innocent and pure, just like all of us were, and then things went to hell and the world failed them. WE failed them. we fail each other every single day. all of us.
these tragedies that plague us *are* preventable. they are a failure on ALL of our parts, every single one of us. whether we're talking a mass shooting or a guy who stabs his girlfriend to death and mutilates her body or a parent beating a child or someone torturing animals in a fighting ring. every act of violence is an act of failure. it's an act of education and religion and cruelty and abuse and hate hate hate. children are not born into this world hating. we teach them to.

we create monsters and then rid ourselves of responsibility and make them "other" so we don't have to acknowledge our failures.

i understand that many people out there can't do more than offer thoughts and prayers. that you may not be able to donate blood or money or volunteer. you probably feel helpless, just like i do. you don't know what else to say or do. so im here to help you. what can you do? you can teach people around you not to hate. you can speak up when someone you know is being abused or committing abuse. you can be there for someone with mental illness no matter how exhausting they are. you can think twice before making disparaging remarks in front of your children and you can correct other people who make disparaging remarks in front of theirs.

will they appreciate it? probably not. but when they tell you, "this is my child, and i will raise them how i see fit." you can tell them, "your child didn't know how to hate until you taught them to." maybe it will make them think, maybe it won't. but you can try. because THOSE are the thoughts and prayers we need. we need action, we need change, we need people to be aware that they are teaching their children to hate, that they are creating a monster where there wasn't one. that we are failing our children and WE have to change.

every single act of violence is a reflection on ALL of us. every single one. they weren't born wanting to do this.

"Apathy kills anger - and this is what ya choose.
There's always gonna be somebody who will lose.
Did ya ever stop and think about the world as is.
Life's about living, can't believe it's come to this.
It's not about me. it's not about you.
It's not about them or what they do.
It's not about pride, it's about
We must all understand:
Violence lies."

 - Bif Naked, Violence

Dear 'Maggots'..

I read an interview once with Shawn "Clown" Crahan of Slipknot in passing. It popped up on my Facebook feed and I was intrigued by the promise of an explanation as to why he dubbed Slipknot fans "Maggots". In the very powerful and moving interview he gave, he said something that stuck with me.

"We’re not just a band, we’re a fucking culture–I know this. We have so many fans that I can’t even tell you because I would be incorrect. And we are one in the same, we are equal, we are together forever."

It's been a long time since my metalhead days—though I am definitely still a freak and anyone getting in the car with me knows they'd better bring some earplugs if they're not down with some heavy bass and metal voices—but the metal culture in general has always been a place where I felt at home, where I could connect. From something as simple as a nod to someone else wearing a band shirt to the absolute lifeline it provided me as a severely messed up teenager, there's an invisible string that connected me with every other lost soul on this planet who sought solace in the music. And so Clown's words certainly resonated with me—and more so now than ever.

About a year ago I had to start using a wheelchair on bad days or for anything requiring what my body feels is "excessive" walking, like going from my car into my classroom. My legs give out on me randomly, and I get dizzy/lightheaded, weak, and sometimes I fall. I have a feeding tube, but the feeds frequently make me sick and cause severe intestinal cramps--and even when they dont, my goal rate for my pump is a pipe dream, so I'm still not getting all the nutrition I need. I have a faulty autonomic system, which means my body has trouble regulating involuntary things like blood pressure, heart rate, and body temperature. I am nearly always nauseous and I am always in some level of pain. Some days I get by and some days I can't function.

My doctors believe that most of my medical problems (which include gastroparesis, dysautonomia, hyperthyroidism, eosinophilic gastroenteritis, and increasingly slow intestinal motility) are actually symptoms of a genetic mutation in the mitochondria of my DNA. Mitochondrial Disease is a misleading name, because there are thousands, if not more, of types of 'Mito', that can affect any part of the body that has mitochondria (everything except red blood cells) to any degree. Most forms of Mito can't even be tested for, and the genetic tests for the handful of types they can test for are frequently inconclusive or inaccurate and prohibitively expensive (the most basic blood test that my neurogeneticist ordered was nearly $20,000 and insurance usually won't pay for genetic testing, especially if you have Medicare/Medicaid.)

The mitochondria are like batteries for your body's cells. When there's a malfunction in the mitochondria, it's like having a dying battery in your flashlight. The light might come and go, or get progressively dimmer until the battery is completely drained. This is what happens to a human body with mitochondrial disease. And at this point, without the ability to do further testing, the belief is that this is what is happening to my body.

Because the past few months have been so crazy for me, I've been very bad at keeping up with all my loved ones on Facebook, especially since Facebook prefers to show me articles, pages, and picture shares over showing me the actual posts from said loved ones. The combination of this meant that I didn't remember (cognitive function is for squares) the conversation we had awhile back, that Stacy was planning to fundraise on my behalf (she asked if it would be okay)--so I didn't realize/remember it was going on, until she messaged me the other day about it. And when I saw how many people were involved, I was completely blown away to the point of being speechless--and anyone who knows me will tell you, it's very rare for me to not have something to say. ;)

when i said i wanted a new stomach
this isn't exactly what i had in mind.

Since then, I have gone back and read her posts on Facebook and Instagram, saw the article on Slipknotiowa.com, and cried several times. Aside of being so incredibly grateful to have a friend as amazing, smart, funny, supportive, and beautiful inside & out as Stacy (as I have been as long as we've known each other), I am blown away by her kindness, and by the amazing outpouring of support from the Slipknot community.

And this is why I am thinking back to that interview with Clown. Because I am looking at the <a href= GoFundMe page, and I am overwhelmed by the number of people who have been willing to help someone they don't even know—and even more than that, the encouragement and support in the comments. It's no secret that chronic and terminal illnesses carry depression with them--it's kind of inevitable. And when you find yourself filled up with sadness, a single kind word can mean an awful lot.

Outsiders look at the people lining a mosh pit or walking around with spiked jewelry and crazy hair, and they see something scary and ugly. But what I see is a community of people who have been freaks, outsiders, weirdos, and losers their entire life, who know what it's like to get kicked down and then stepped on. People who have refused to stay down, and have built their hearts up to resist whatever pain the outside world has to offer. I see a community of people who find solace and love and inner peace in the music, comfort in the culture, and the sense of belonging that a family gives you—and we are all a family. We are all connected by that invisible string, and when one person falls down, the rest of us feel the tug, and then we have a choice to either pull that person back up on their feet or cut the string and let them fall.

I am grateful beyond measure that you all have reached your hands out to try to help me stand up again. Thank you for not cutting the string and letting me fall. Thank you for letting me be part of the family.

\m/ \m/

"And they are beautiful, and, without them, I am nothing."
– Shawn "Clown" Crahan, Slipknot

people are getting high, so let's criminalize the disabled.

 According to the agency, Kratom taken in low doses can give you a boost, making people feel more alert. But taken in high doses, the DEA warns, it can act like an opioid, making you feel euphoric and addicted.

- Lawmaker looks to ban [kratom] in NJ

the first thing you need to know is that the quack behind this is someone who makes his bones passing out methadone to addicts. because kratom is well-documented as a method of kicking opiate addiction. and if people are able to help themselves and chew a couple of leaves instead of being forced into dependency on expensive chemicals, dr. douche is out of a job and the pharmaceutical companies are out god only knows how much money.

and this? this. this may be one of the dumbest things i've ever seen:

“They should get rid of it,” said Brick resident Hannah Hall, “There are people getting high around here. Kids are dying.”

- Lawmaker looks to ban [kratom] in NJ

who is hannah hall? what does she know about anything? well, a cursory search is rather enlightening. ms. hall, who is in her 50's, knows a thing or two about the law, because in february of 2012, the brick resident was the subject of an arrest warrant.

Hannah Hall, 53, of Taft Drive, arrested by Sheriff’s Detectives S. Metta and J. Mercado on a Superior Court Warrant for failure to appear for sentencing on original charges of credit card theft. Hall was processed and lodged in the Ocean County  Jail with no option for bail.

- 7 Brick Residents Arrested in Sheriff's Sweep

so ms. hall feels that it is okay to steal someone else's credit card and then evade punishment for it, but has no tolerance for people getting high. it's all about priorities, i suppose.

pretending for a moment that ms. hall isn't a criminal who victimized another human being, i would be keen to ask her what kids are dying from kratom, in ocean county or anywhere else. i don't see a list of names attached to autopsy reports showing they died from using kratom. it seems odd to me that such an epidemic would go totally unreported, but ms. hall is the expert, after all.

we have to give the author of that article, christine duffy, some credit as well, of course. she did write the thoroughly unresearched article, post claims that have no basis in fact, and present ms. hall as some kind of kratom death expert. perhaps someone should ask ms. duffy if she often makes a habit of reporting unsubstantiated 'facts' on her twitter page.

---

i used to love my country. growing up, i wanted to serve in the marine corps. i taught myself about politics, government, and law from the time i was 5 years old. i was already using a wheelchair when i signed up for ROTC--knowing i would never, ever be allowed to commission--and nearly killed myself for a few weeks before a PT session that i refused to give up on landed me in the hospital.

even in the face of the many awful things my country has done, i still loved it, still felt loyalty to it. i was still willing to sign up to die for it. i crawled across a field on my stomach, ignoring my feeding tube as it ripped into my body and bled, because ROTC was as close to serving my country as i would ever be able to come. i wanted it bad enough that i bled for it. i vomited through it. i passed out, i fell down, and i did serious damage to my body with one single PT session. that's how badly i wanted to be a part, to any degree, of my country's military. that's how much i wanted to serve the country i love.

and now all i do is dream about leaving it.

i love america but
america doesn't love me.

because my country doesn't love me back. it doesnt care about me at all.

it does not care that i suffer, that my needs arent being met, that i try harder than 99% of people every single day. i get up and i go to school and i work and i bust my ass all day, every day, when i could very easily and justifiably say "i'm too sick." and give it all up and just lay around all day doing nothing. i'd feel better if i gave up. id be entitled to more benefits and help if i gave up. my home health aid hours were cut to only 6 hours a week. because i am "too independent" to need the 9 they originally approved for me.

if the money used to fight the "War on drugs" were funneled into medicare instead, every disabled, sick, and elderly person would be able to have access to the treatments, supplies, doctors, procedures, and equipment they need to live the fullest version of their life. but instead, that money is used to lock up people for smoking a joint or eating mushrooms. and probably soon for ordering kratom--which has its largest user base among people suffering from chronic pain, people with anxiety, and people who are using it to relieve the symptoms of withdrawal as they get themselves off opiates without the help of a methadone clinic.

but who cares about the legitimate medical needs that drive kratom or marijuana users? there are people getting high.

---

my 50lb wheelchair. which is also ill-fitting, but
a custom fitted one costs more than my life is worth.

i go to school, and on a bad day--which are getting more and more common as my conditions progress--i slide around the side of my car to my trunk. i sit on the bumper because my legs are too weak to hold me up while lifting a 50lb wheelchair out of the car. i use the wheels as much as possible to roll my chair down the back of my car. by the time i get the chair out, attach the legs, get myself situated, and then roll myself across the street, up a ramp thats too steep and not flat, that i've fallen out of my wheelchair while trying to use twice in the past month, and get to my classroom---by the time all that is done, i am drenched in sweat, my heart rate is dangerously high, and every inch of my upper body throbs and aches with muscles that are just too weak to do that kind of manual labor.

and i do it all the time. because it's what i have to do, to get my education. i have no one here to drive me around. i have to do it all myself--or i have to stop doing anything. i have had over a decade of illness, of misery, of hospitalizations and infections and a wide range of humiliating symptoms and accidents, along with a million other things healthy people don't want to know about.

and there are exactly two things that help: marijuana and kratom. i have to do battle with every refill of marinol, the synthetic THC pill i take that lets me ingest things using my mouth. without it, i can't even run my tube feeds. without it, i was about to get put on TPN (IV nutrition) because i am so broken that i can't even manage to meet my bodys most basic needs on my own.

a few decades ago, i would already be dead.

but, you know. that's not important. because there are people getting high.

---

the so-called "war on drugs" isn't a war on drugs: it's a war on people. people like me. we are the only casualties in this war.

people who want to get high will find a way to get high. people who use drugs recreationally will not stop doing it just because those drugs are illegal. outlawing weed, cocaine, heroin, ecstasy, whatever, has not stopped people from using them. what it has done is stop people who are uncomfortable breaking the law, would not do well in jail, or bound by a pain management contract to only take
what that dr gives them even if it doesnt work or has awful side effects. it has stopped people who are too ill to go into the world and make friends with someone who has access to weed or pills or whatever makes them feel better.

hard to get. not impossible.

i hear the party line response:

"making these substances illegal makes it harder for people to get them and keeps them out of the hands of kids."

and obviously that works, which is why prohibition is still in effect and there's a huge market for moonshine runs and speakeasies. obviously that works, which is why we have seen illegal drug use decline. obviously that works, because countries that have decriminalized drugs like portugal have seen a rise in use and drug related crime.

except, oh wait. they havent:

14 Years After Decriminalizing All Drugs, Here's What Portugal Looks Like
 http://mic.com/articles/110344/14-years-after-portugal-decriminalized-all-drugs-here-s-what-s-happening )

this approach is exactly as successful as abstinence only sex ed--which is to say not even a little bit.

portugal's stats:

but who cares about science and fact? there are people getting high.

---

im sick of being treated like a criminal for being ill.

im sick of this country and the absolutely ridiculous laws governing every aspect of the lives of the sick, disabled, elderly, indigent, and indigenous.

im sick of the COMPLETE HYPOCRISY of people trying to outlaw and control and deny people of drugs that help because "Drugs are bad!", while allowing alcohol companies to advertise on TV. im garbage for wanting relief from my chronic pain or wanting to be able to eat without having it be through the tube in my gut, but alcohol use is just fine.

i ate through my nose for a year
before they made the tube a
permanent one in my gut.

 im sick of doctors that dont listen or care, and a government that would rather i just go die and stop costing them money.

im sick of being denied things that help me live an actual life, instead of being trapped in bed all the time, because someone has decided that my life is not worth a specific amount of money.

im sick of the overreaching by the FDA and the DEA, to make sure everyone is on a bunch of shitty prescription drugs that have more side effects than benefits while denying us the option of using natural herbs like marijuana and kratom and poppy seeds.

im sick of the criminalization of drugs that have literally been used since the neanderthals were at the top of the food chain.

im sick of facing problems every single month in getting my LEGALLY PRESCRIBED PAINKILLERS because the insurance or the pharmacist or the governor feels that i am suspect because im not 90.

im sick of insurance companies making decisions instead of doctors.

im sick of being sick and everyone in a position to help me feel better doing everything they can to keep me sick.

im sick of having pills shoved down my throat that dont work because it's all there is.

im sick and nobody gives a damn.

because there are people getting high.

---

they'd rather pay for hospital visits
and hope i get MRSA.

i had a conversation a few years ago. it was with a friend who was on IV nutrition and hadn't eaten a single bite of food in over 5 years. while she was inpatient yet again, they gave her marinol, the miracle synthetic THC pill that i take every day. i spoke to her while the side effects of it made her sleepy and surprisingly helped ease the spasms that were taking over her legs as well. i spoke to her after she'd just eaten a container of jello--the first food to pass her lips in half a decade.

friend: it's too bad this is all temporary.
me: they won't write you a prescription for marinol once you leave the hospital??
friend: they will. they did. medicare denied it, though. too expensive and they don't think i need it.
me: too expensive? its $500 a month. isn't TPN more?
friend: my TPN is about $1,000 a day.
me: ..so isn't it cheaper for them to pay 500 a month rather than 1000 a day?
friend: in the short term. but in the long run, they'd rather pay for the TPN. if i'm on TPN, ill die a lot sooner and dead people don't cost anything.

dead people don't cost anything.

i hope everyone who just read this post thinks of those words every single day. dead people don't cost anything. because that is the bottom line. that is what it all comes down to. if people have options for treatment, if people can keep their illnesses at bay enough to keep being alive, they are going to cost money for longer than they would if they had no options.

and here's the rub: even if someone sick or disabled CAN work, sometimes they don't. because the jobs they are qualified for or capable of doing, are ones that don't have the kind of health insurance coverage that someone with serious chronic conditions needs. medicare and medicaid are incredibly limited, but they do cover ER visits. they do cover some medications and specialists. if you know how to do the medicaid tapdance, they may even cover a wheelchair or a feeding tube. good luck finding that kind of coverage in a job at walmart or mcdonalds.

i have to eat this way because
there are people getting high.

people who are alive and too sick to work cost money. (never mind that our families paid into the system for generations with the specific hope that should they or their loved ones fall ill some day, they would be taken care of.)

elderly people who aren't working anymore cost money (never mind that they earned it.)

disabled people who can't work or who can only work part-time or menial jobs that don't pay a living wage, cost money.

anyone with medicare or medicaid, many of whom are children, costs money.

people are getting high and dead people don't cost anything. it's a win/win situation for the insurance and pharmaceutical industries, not to mention politicians who know they can woo uneducated masses into supporting any anti-drug cause without thinking about it too much.

and of course, the self-righteous uneducated masses like brick resident hannah hall, who is interested in purchasing that bridge in brooklyn using someone else's credit card if you're willing to sell it to her.

#icantbreathe aka the time police almost killed me but didn't.

i want to talk about white privilege. before you click that little X in the corner, i want to tell you that i understand what you’re feeling right now, reading that. you’re thinking, “i’m poor” or “i’m disabled” or “my grandparents imigrated here”, or any one of a thousand other reasons you feel that you aren’t privileged. i understand that because i used to feel the same way. i grew up in a welfare family. at the end of the month there was never food in the fridge. i wore tattered hand-me-downs and our christmas presents came from the telephone company or the salvation army or whatever charity took pity on my single working college student mother and her two young daughters. i am also seriously chronically ill and physically disabled. i use a hearing aid, a wheelchair, a walker, and i eat through a tube stuck in a hole that was surgically punched through my stomach wall. i am gay, autistic, and 5th generation american.

i am also white.

i used to think, probably like you are right now, about the terribly difficult life i had and still have. how could i be privileged? look at all the evidence that i’m not privileged, right? but privilege has different levels. if you are in a heterosexual relationship right now, you have heterosexual privilege. this is true no matter what your skin color is—you are privileged in a way that i, as a lesbian, am not. you do not have to live in fear that someone will hurt you or the person you love for being together. you can get married and never worry about what state you’re in. you can adopt a child, you can visit your partner in the hospital, and should your spouse die without a will, you will get whatever rights are due you, including survivor benefits and unquestionable custody of your children. none of this is true of me. so in regards to sexuality, you are more privileged than i am.

so when i say the words “white privilege”, i want you to understand that i am talking about your skin color and nothing else. the rest of your life is objectively excluded from this argument. it doesn’t matter how poor you are, or what gender or sexuality you are. it doesn’t matter if you have a wheelchair or a seeing eye dog or an ostomy. if your skin is light, you have a privilege that people who are dark-skinned simply do not have.

when a police officer sees you standing on a corner they assume that you are waiting for a friend, waiting for a bus, waiting to cross the street, or just hanging out. if you’re in a mostly black neighborhood, he will assume you are lost.

but if you have dark skin, and are standing on a corner, they assume you are buying or selling drugs, looking for someone to carjack, waiting for your fellow gang members, casing a place you intend to rob, or, if you’re a female, prostituting yourself. if you’re in a primarily white neighborhood, he will assume you are there to commit a crime.

white privilege is being able to walk down the street and having nobody notice you. when your skin is dark, you cannot blend into the background that way. you stick out even among other dark-skinned people as a target of interest to suspicious whites.

i want to tell you a story from my life now.

this all happened only a few weeks after my 18th birthday. a legal adult and in a bad mental place, i made the poor decision to steal a book from a toy store. it was stupid, it was illegal, it was wrong, and it ended with me in handcuffs getting stuffed into a police cruiser and taken to one of philadelphia’s hovels that passes as a police station. i deserved to be arrested and punished—i broke the law. i took something that i did not pay for and i didn’t even have the moral high ground of it being food or medicine.

i was brought into the station around 2pm and put in a cell. as the hours passed, my cell and the ones around me filled up because the police had been doing a bust on several crack dealers in the area. sitting on a cold, dirty metal shelf and staring at a corroded privacy-free toilet-slash-water fountain, chewing slowly on a stale cheese sandwich and purposely not sipping the carton of iced tea i’d been given because i didn’t want to piss in front of 40 strangers, i was surrounded by drug addicts and scared out of my mind. one black woman sat next to me, using a fake nail she’d snapped off her finger to slash into her fingertips, attempting to obscure her fingerprints. the cells overflowed with other black women and a handful of white women.

im gonna interrupt myself to point out that drug users in general are predominantly white, while crack users are predominantly black. if you think it’s a coincidence that they were cracking down on crack, i refer you to leroy jethro gibbs, who doesn’t believe in coincidence.

after a few hours of sitting with my knees pulled to my chest, the elmo fabric of my pants getting increasingly dirty from the squalor of the cell, crying on and off quietly and wanting nothing more than to just be home with my mom, the woman who’d been trying to scratch off her fingerprints looked over at me and frowned. “how old are you?” she said. “shouldn’t you be at juvie?” i wiped my cheeks and shook my head. “i turned 18 last week.” the woman sat up straight and i shrank into myself, afraid of this stranger who’d been arrested—never mind that i’d been arrested, because i wasn’t a real criminal, i wasn’t buying crack.

and this woman, who had made a career out of sitting in jail cells at that point, reached out and gently touched my shoulder. she said, “honey, tell me you didn’t tell them you were 18. tell me you lied about your age.” i told her no, i hadn’t. that i’d figured they would know if i was lying and i’d be in more trouble. she, and a few other women from our cell and the others, then gave me an hours-long lesson on police procedure, on law, on attitude, and on the fact that because i was a young white girl, if i had told them i was only 17 or 16 or 15, i would be home with my mom right now, the way my younger sister who had also taken something and who also was arrested, but had been brought to juvie and released within a few hours, was.

later that night, around 8 or 9 pm, i had an asthma attack. i felt it coming on, felt my lungs tightening, and i kept telling the police officers that i couldn’t breathe, that my inhaler was in my pink backpack i could see hanging on the wall behind a desk. they never looked up, never acknowledged me. i fell to the floor and while i was half-conscious, my cheek resting on the ground in a puddle of my own vomit, my vision going dark and my lips turning blue, choking and gasping for breath, i heard a woman in the cell opposite mine—one of the only other white women in there, and whose husband was a lawyer who probably would not be happy to hear she’d been picked up at the crack bust—shouting that they were going to have one hell of a lawsuit if i died there, and that every last woman on the cell block was a witness. the women shouted and stomped and banged on the bars, all of them yelling and rubbing my back and trying to get me to breathe, screaming at the cops to get the inhaler out of my backpack, telling them i was dying.

at some point someone pressed the inhaler into my hand and, too weak to lift it to my mouth myself, a dark, feminine hand lifted the inhaler to my lips and depressed it, thumping my back, rolling me to my side, trying to force me to take one last breath, to pull the medication into my dying lungs. the next thing i knew my own hand was on the inhaler and i pumped it a dozen times, gulping in the albuterol and forcing my lungs to keep working until the EMT’s arrived. with a blood pressure of 250/180 and oxygen being forced into my lungs from a tank, they took me to the hospital via ambulance and kept me there until my blood pressure dropped. the triage nurse made them take the cuffs off of me when she found out i was in for shoplifting a $5.00 book, and threw the cop out of the room. she told me i had to calm down because i was about to have a heart attack. after she’d stabilized me and i’d been forcibly drug tested at the officer’s request (i was sXe & they had no reason to believe otherwise), i was taken back to the cell. every woman in the hall reached out as they marched me back to the cell, touching my shoulders and thanking god that i’d come back, because they didn’t think i would. those women, those "hardened criminals" that i'd been so afraid of, saved my life. they protected me while i was there, they comforted me and enabled me to survive one of the worst experiences of my life.

after that, i was kept at the precinct all night before being transferred to the “round house” the next day. we were herded around like animals and finally, at the round house, given toilet paper for when we had to use the bathroom. later that second day i went before a judge in a little room with a bunch of individual video-phones. i never spoke. the judge looked at me and released me “ROR” which means “Released on Recognizance”—basically that i realized i’d committed a crime and i was sorry about it. i did not need bail money or a lawyer. i was told i would receive a date and time and location to attend a criminal justice class, which did cost several hundred dollars to attend, but that after spending two hours learning about the justice system, my record would be expunged and no one would ever know what i did. and that’s precisely what happened. the only reason anybody would know what i did and what happened to me, is the fact that i am blogging about it right now.

now that i’ve told you my story, i’m sure you’re saying, “but look there, you are white and you almost died, you were on the ground crying out ‘I can’t breathe’. so how is that privilege?”

the privilege is that i am here. telling you this story. i did not die on that jail cell floor. my heart did not stop beating. they brought me my inhaler when they realized i wasn’t pretending, when they realized what an outcry my death would cause. when they realized that if a young white girl was left to die on the ground, people would be angry. people would care.

eric garner did not have that privilege. the policemen and EMTs that left eric garner to die did not think to themselves, “people will be angry. people will care that this man is dead.”

the only reason that i am alive right now is because i am white. because my picture on the evening news would outrage the nation. a young white girl with a life full of potential was left to die over a $5 book, the politicans and news anchors would say. how could such a tragedy be allowed to happen? how could these officers, these people charged with upholding and enforcing the law, let this child die?

Michael Brown, 18.
Eric Garner, 43.
Kimani Gray, 16.
Kendrec McDade, 19.
Timothy Russell, 43.
Ervin Jefferson, 18.
Amadou Diallo, 23.
Patrick Dorismond, 26.
Ousmane Zongo, 43.
Timothy Stansbury, Jr., 19.
Sean Bell, 23.
Orlando Barlow, 28.
Aaron Campbell, 25.
Victor Steen, 17.
Steven Eugene Washington, 27. (Autistic)
Alonzo Ashley, 29.
Wendell Allen, 20.
James Brissette, 17.
Ronald Madison, 40. (Mentally disabled)
Travares McGill, 16.
Ramarley Graham, 18.
Oscar Grant, 22.
Trayvon Martin, 17.

all black males. all unarmed. all murdered by police officers.

all somebody’s child, too.

white privilege is not having to think of these names every time you leave the house. white privilege is not having to be afraid of being killed for existing. white privilege is having the police assume you are unarmed, assume you are where you are for legitimate reasons. white privilege is being given a pass, being given the benefit of the doubt, being assumed innocent until proven guilty rather than guilty until proven innocent. white privilege is never being in the wrong place at the wrong time.

white privilege is surviving to tell the story of the time you almost died in police custody, rather than having the story told by your surviving loved ones while you are six feet under.

the chubby tubie and other medical marvels

this entry, like so many others, started out as a comment to a dear friend. she, like me, is a bit on the fluffy side and as such, she has faced much of the same nonsense i have in regards to being ill and needing a feeding tube. there's an unfortunate and inaccurate belief among many people, including medical professionals, that if someone is overweight it is the source of any malady they experience. there is also a belief that those of us who are fluffy, chubby, pudgy, or squishy cannot possibly be in much danger of dying from starvation because hey, we have a few extra layers, right?

well, not so much, actually. in fact, not at all.


that's why i'm here to tell you that if you hold those beliefs you are sorely mistaken. and i want to help you, dear reader, to understand why what you know about weight is wrong, as well as to understand a bit more about how this disease that i and so many of my friends suffer from, works.

NECESSARY DISCLAIMER: im gonna preface this entry by saying anyone who has anything to say about my weight or anyone else's weight, whether they are heavy, thin, or "just right", will get a smackdown. so if you don't think you can read about a chubby girl or a skinny girl or see pics of them without making a nasty comment, dont read any further. someone else's body is really none of your business in the first place anyway. i'm writing this blog to educate, not to encourage stereotyping, shaming, and cruelty. nasty or ignorant comments will be removed and their writers will be permanently banned and possibly have their computer exploded from the inside out by my brother, the hacker slash codemonkey extraordinaire.

i also want to apologize (but only a little, since i wouldn't have written this if i didn't think it was important!) for the length of this, but i feel this is a very important topic that doesn't get discussed nearly often enough, and i feel that people who are heavy are often dismissed by doctors as well as others in the community, their friends, their family, and even perfect strangers. so i have a lot to say, and i want you all to take every word of it to heart---i think that everyone should know this stuff when it comes to the very touchy and often upsetting subject of being chronically ill and overweight at the same time, because even doctors assume that if you're heavy, that's why you're sick.

my beautiful & bubbly bestie

okay. onwards, dear reader.

first things first: weight is irrelevant.

no, seriously. hear me out. im old and i know things and this is an important thing that i want all of you to know as well. weight. is. irrelevant.

weight means nothing. nothing at all. there are people who are underweight and have been for their entire lives but were always healthy. my bestie pixi is one such person--even though she's chronically ill now, with a condition called UPJ (Uretero Pelvic Junction Obstruction) she has always been very thin and was in pretty decent health for most of her life.

there are also lots of people who are overweight or, yes, even morbidly obese who are healthy! no diabetes type II, no heart problems. athletic, active, healthy-eating people who just happen to be heavier than a chart hanging in a doctor's office somewhere says they should be. you can be healthy or you can be ill at any weight.

in fact, many times weight has nothing whatsoever to do with your health! in many, many cases, whether someone is overweight or underweight, weight can actually be a symptom of a problem rather than the cause of the problem.

im gonna give you a partial hit of my story here, and stick with me cause i promise its very relevant.

shortly before i was diagnosed with gastroparesis, i was the thinnest i'd ever been in my life. at 5'1 i was 148lbs. which is still overweight, but for me, for my body type, for my build and the way i carried the weight, i was wearing a

Helicobacter pylori, previously named Campylobacter pylori,
is a Gram-negative, microaerophilic bacterium found in the stomach.
Read more about h. pylori at ilovebacteria.com.

size 14/16 in little girls clothing, comfortably. that was after a lifetime of being very overweight. i

me at 148lbs in a child's tshirt.

started getting sick, and was first diagnosed with a raging helicobacter pylori infection that they said had probably been attacking my gut for years at that point.


they treated it, but i didnt get better. then they took my gall bladder out. and it still didnt get better. finally they diagnosed me with gastroparesis after an endoscopy revealed food that had just been chilling out in my stomach for over 72 hours already. for nearly ten years it was bearable. i threw up a few times a week maybe, or if i ate something really bad (deep-fried food, marinara sauce, etc). but i was functional and i just had to take some pills now and then, with an ER trip thrown in every so often for a "hard reset" when i got stuck in a vomiting cycle.

but things changed drastically in december 2011. my girlfriend and i ordered chinese food. all i had was white rice (i was never much of an adventurous eater), but we both got really terrible food poisoning and spent the following week in that special hell known only to those who have gotten really terrible food poisoning. at the end of the week, my love got better. but i never did. that bout of food poisoning set loose something in my body that i am still battling to this day. melodramatic phrasing aside, it truly changed my life forever, in ways i could have never imagined beforehand.

me at 148lbs again.

at that point i weighed probably somewhere around 250 or so. a lot for somebody my height and build. the jump from 148 to 250 came mostly from risperdal, but also some other psych meds plus spending a LOT of time locked up in a psych ward for weeks at a time (with no physical activity at all beyond walking from my bed to the cafeteria to group and back again) contributed as well. so, whatever. that made me morbidly obese and i was unable to lose that weight again.

much to my chagrin, even though i was throwing up every single day sometimes more than 20 times in a 24 hours period, i was *gaining* weight.

me at max weight, with a swollen "GP"
belly after eating a few bites of egg.

because of this i had a lot of doctors tell me, "well, you must be keeping something down. you're gaining weight, and your cholesterol, which was previously fine, is now off the charts." honestly for a bit i thought i was going crazy. but i finally got sent to a GI who was more concerned with my health than my weight, and my first NJ tube was placed, and suddenly i was able to function again. i wasn't even on formula at the time--just getting my meds through the tube improved my quality of life vastly.

up until a little less than a year ago (about winter 2013 or so, through summer 2013) i more or less maintained my weight. and even my labs, though they were borderline, were still just barely within normal range. for all intents and purposes, my body was telling my doctors that i was fine. but of course, i wasn't really. in march 2013, after almost a year of having NJ tubes in (for a total of 5 different ones over the course of 11 months), my GI placed the GJ tube, and we finally got approval for the proper formula and i was actually running feeds daily and it was all good.

more calories = losing weight?!

i was getting more nutrition than id ever had in my life (since i was a baby ive been a very picky eater and only eaten mostly carbs, even well before i was sick) but i was losing weight. how could such a thing even be possible?! because for the first time i was getting regular nutrition-not just calories, but all the vitamins and nutrients and micro-nutrients--my metabolism was like "whoah. dude. so sorry, i didnt realize i was supposed to be doing stuff. ill get right back on that." and it kicked in and started burning away the weight. my cholesterol labs went back into normal/low range as well.

it's actually pretty simple. when the body goes into starvation mode, it holds on to absolutely everything you put in it. a healthy body gets food regularly, separates the crap from the good stuff, absorbs the good, and throws the crap out (literally turning crap into actual crap.) but when you're not giving your body nutrition on the regular, your body goes into survival mode and is basically yelling at all of your organs, "guys! guys dont get rid of that! i dont care where you store it--stick it in an elbow or something, but we need to hang onto that. i need that, so dont get rid of it." and so your body, knowing that it's not getting fed regularly, becomes an extreme hoarder and it doesnt get rid of anything.

and of course, you're also dehydrated. so the body starts holding onto that as well. and when it gets to the point where you're not taking in much of anything, your body once again panics, and it starts digging into all that crap it stored up, the emergency winter supply of fat (fun fact: a person cannot BE fat. fat is a layer of a greasy-ish substance that forms under the skin, also known as 'adipose tissue'. the idea of a person literally being fat is slang and also inaccurate and mean.)

medicine, yay!

so, when the body panics and starts eating all the fat it stored away, it produces cholesterol as a by-product of that self-cannibalization. many people who are starving will see a sometimes serious jump in their cholesterol, and if, like me, their primary dr at the time is a doofus, he will tell them to stop eating fried foods, which is probably the least helpful advice for that situation ever.

so because i ramble lets recap. in the third person because it's fun to talk like that.

• lissy is throwing up a lot and cannot hold food down.
• lissy's metabolism panics and orders lissy's body to start holding onto every single cracker, popsicle, and grain of salt lissy does manage to keep down.
• this goes on for awhile until lissy's metabolism realizes "well, we can't stay alive on crackers." and orders the other organs to start cannibalizing as much of themselves and each other as possible.
• lissy's cholesterol goes up and lissy is still overweight, so nobody takes lissy seriously.
• lissy gets sicker and sicker until she can no longer function, and ends up in the hospital.
• lissy finally finds a doctor that understands this process, and they put a feeding tube in.
• lissy starts getting nutrition, and GAINS MORE WEIGHT. this is because her metabolism is still on alert level red. it hasn't realized that the nutrition will keep coming, so it's still holding onto absolutely everything.
• after a bit, though, lissy's metabolism realizes, "oh. this isn't temporary, guys. it looks like things are okay." and drops the alert level down from red "severe" back into blue "guarded".
• with the alert level back down, lissy's organs stop cannibalizing themselves and every spare bit of fat they can find, and rapidly lissy starts losing weight, because her body has realized that it doesn't need to be a hoarder anymore and called the sanitation commission to clean things out with a bit of help from miralax and fleet.
• lissy's weight loss slows and her cholesterol is back to normal. she's still chubby because she's a chubby person and always has been, but her body is functioning the way it's supposed to (more or less), and it has begun to lose weight at a rate of a few lbs here and there--a nice, healthy, SLOW, weight loss.

[PSA: fast weight loss is a very, very bad thing. no matter how healthy you think you're being when you lose weight, if you're losing weight fast, it can be extremely dangerous. healthy weight loss is no more than 1-2 pounds per week. speaking strictly calorically, a reduction of 500-1000 calories per day causes weight loss of

1-2lbs a week. anything more than that can be very dangerous and in some cases, life threatening.]

now, last year, when my nutrition crashed again due to the eosinophilic disorder and the incredibly harsh formula i was on that i could not tolerate, i was taking in basically nothing--not even the eat-and-puke cycle we're all so familiar with, i just flat out was taking nothing in because my body just became too weak to be vomiting 20+ times a day again. during that time (a period of about 3 months or so), i lost 70 lbs. which is very, very unhealthy and dangerous.

i suspect that because i was getting less than 500 calories a day, my body pushed right past the "hold onto everything" panic and just kind of gave up. at that point i was told that if we didn't get a grip on it very quickly, i didnt have a choice and was going to have to go on TPN (that's IV nutrition, generally given through a central line, for those playing the at-home version of this game.) thankfully my GI discovered through scope biopsies that i had eosinophilic gastroenteritis. (for those who dont know, i sugest checking out APFED to learn more about eosinophilic disease. but to give an idea, ive always referred to it as "the allergic-to-everything disease" because thats basically what it is--EoS provokes an immune respose from the body to anything and/or everything and while it really does vary what "safe foods" there are for

tubes are beautiful because being alive is beautiful.

each person with a form of eos, in general people with an eosinophilic disease's list of unsafe foods is much, much longer than their list of safe foods. there are people with eos who literally cannot eat any food at all and many who can only eat one or two types of food.)

i was given steroids and placed on a hypoallergenic elemental formula, and again, the weight loss plateaud.

currently i am still on the stereoid. i still have a GJ tube and am still on the elemental formula, but i am once again not doing so well with it. so even though i am STILL overweight--despite going from a maximum weight of 275lbs down to my current weight which i will not share--i am still pretty sick, and our priority right now is to get me to a place where i can run feeds regularly again.

but throughout all of this, my labs have never shown that i was starving (because i wasnt--i had lots of fat for my body to cannibalize, which kept my labs in the normal range, something that would not likely happen for someone who was thin to start with). i have never been even a "normal" weight for my height, never mind underweight. i have had a lot of people not take me seriously because hell, how sick could i be if i was so big?

and for the grand finale, even all of that set aside--one of the biggest issues with gastroparesis is vomiting. some people dont vomit, but most GPers do. and every single time a person vomits, they are doing damage to their stomach, esophagus, throat, teeth, and even their muscles, spinal cord, and believe it or not, eyes. vomiting is a very violent thing, and the body is only meant to do it in order to get rid of something that is toxic, such as spoiled food or poison. prolonged vomiting can and does cause all kinds of really serious and life-threatening issues.

- a mallory-weiss tear can cause internal bleeding so severe that a person could bleed to death interally before they even realized anything was wrong.

thumbs up for tube feeding!

- forceful vomiting can cause blood vessels in the eyes to burst and damage your eyesight (my eye dr regularly checks my eyes with every tool at his disposal because he is concerned about exactly that--something i didn't evne know was possible until he told me it was.)

- the acid your body produces that comes up every time you vomit does more damage than lindsey lohan on a bender. it strips the teeth of enamel and can cause tears and ulcers throughout the entire digestive tract.

- chronic dehydration can lead to all kinds of problems runing the gamut from UTIs to heart attacks to total renal failure. it also means there's not a lot of moisture in your intestinal tract and can cause obstructions, anal fissures, bowel tearing, external and internal hemheroids, bowel impaction, polyps, and the combination of all these side effects can lead to SIBO and other problems that can eventually lead to inability to voluntarily move one's bowels, necessitating ongoing laxative use and in some cases surgical repairs or the addition of an ostomy to allow the expulsion of waste.

- constant vomiting can also cause cancer in all the places it goes through: stomach, esophagus, throat, mouth--even the sinuses and ears by way of the throat. other complications can cause cancer and other serious issues in the other direction as well.

- sleep vomiting (something that i and many others have experienced) can lead to death by aspiration. (choking to death in one's sleep.)

- repeated vomiting strains the body and can cause spinal injury (i can't count the amount of times that i've thrown my back out just from vomiting), muscle strains and tears, bursted blood vessels, electrolyte imbalance, severe migraines, nerve damage, elevated blood pressure, tachycardia, heart attack, fainting, anyeurism, stroke, seizures, and death.

the bottom line is that a person with gastroparesis (or similar conditions) has all of the same risks and complications as someone with anorexia nervosa and bulimia combined, with a bunch of extra risks and complications thrown in just for fun.

people do not die from gastroparesis. gastroparesis is not a terminal illness.

but they do die from complications due to gastroparesis. and most of those complications are related to long-term damage from prolonged and violent vomiting, ongoing starvation, and simply having old food lingering in the digestive system for several days or longer.

gastroparesis is not about weight. 

its about the hell your body goes through as it tries to keep you alive.

i fight like a girl and i always will.

Book Recommedations

this entry will be dynamic as i come across or remember new books i want to add. i will update this list as necessary, adding other categories and more books. this list is by no means complete at all--these are only books that i have personally read or had enough exposure to, to know they dont suck. :)

it only contains categories i am interested in, and some of these books span more than one category but are only listed once. i might eventually add reviews and links for them, but i'm not sure. anyway, i hope this list helps someone find new books to love!

DYSTOPIAN/POST-APOCALYPTIC

• the hunger games (the hunger games #1) by suzanne collins
• catching fire (the hunger games #2) by suzanne collins
• mockingjay (the hunger games #3) by suzanne collins
• divergent (divergent #1) by veronica roth
• insurgent (divergent #2) by veronica roth
• allegiant (divergent #3) by veronica roth
• uglies (uglies #1) by scott westerfeld
• pretties (uglies #2) by scott westerfeld
• specials (uglies #3) by scott westerfeld
• extras (uglies #4) by scott westerfeld
• on the beach by nevil shute
• biting the sun by tanith lee

MENTAL HEALTH/GENERAL STRUGGLES/AUTISM

• the best little girl in the world by steven levenkron
• the luckiest girl in the world by steven levenkron
• wasted by marya hornbacher 
• prozac nation by elizabeth wurtzel
• girl, interrupted by suzanna kaysen
• it's kind of a funny story by ned vizzini
• the virgin suicides by jeffrey eugenides
• looking for alaska by john green
• bad girls by alex mcaulay
• such a pretty girl by laura wiess
• can't get there from here by todd strasser 
• the silver linings playbook by matthew quick
• broken china by lori aurelia williams
• alt ed by catherin atkins
• you remind me of you by eireann corrigan
• icy sparks by gwyn hyman rubio
• house rules by jodi picoult
• prep by curtis sittenfeld
• veronica decides to die by paulo coelho
• look me in the eye by john elder robison
• violet & claire by francesca lia block
• the hanged man by francesca lia block

CHRONIC/TERMINAL ILLNESS

• the fault in our stars by john green (cancer, amputation)
• side effects by amy goldman koss (cancer)
• my sister's keeper by jodi picoult (cancer)
• handle with care by jodi picoult (osteogenesis imperfecta)
• the doll hospital by james duffy (unknown serious illness)

GLBTQAP+

(gay, lesbian, bisexual, trans*, queer/questioning, asexual, poly, et al)

• girl walking backwards by bett williams
• dive by stacey donovan
• keeping you a secret by julie anne peters
• empress of the world by sara ryan
• annie on my mind by nancy garden
• grl2grl by julie anne peters
• am i blue by various (anthology including francesca lia block & bruce coville)
• i was a teenage fairy by francesca lia block

GHOSTS & SUPERNATURAL

• wait til helen comes by mary downing hahn
• the doll in the garden by mary downing hahn
• the "fear street" series by r.l. stine
• the midnighters series by scott westerfeld
• the last days by scott westerfel
• peeps by scott westerfeld
• leviathan (leviathan #1) by scott westerfeld
• behemoth (leviathan #2) by scott westerfeld
• goliath (leviathan #3) by scott westerfeld

GENERALLY AWESOME BOOKS

• watership down by richard adams
• siddhartha by herman hesse
• dangerous angels by francesca lia block
• the secret garden by frances hodgson burnett
• a little princess by frances hodgson burnett
• so yesterday by scott westerfeld

Autistic Shutdowns: A Visual Aid

i wanted to repost this here because it's really, really good and just in case something goes hinky on tumblr i wanted it to be preserved forever!

i always give credit where credit is due, so the images in here belong to the OP, maitlands@tumblr. you can view the original post here.

Down the Autism Rabbit-Hole and Back Out

It will probably not come as any kind of surprise to my readers that many of my friends, like myself, are Autistic. It may come as a surprise to some people that the majority of Autistics (or ‘Auties’ as I affectionately like to call us sometimes) bear no resemblance to Dustin Hoffman in ‘Rain Man’ whatsoever.

Recently a conversation took place on my personal Facebook wall. It involved discussion about various feelings and behaviors, and whether or not they were autistic in nature. At one point in this conversation a dear friend of mine who is an adult that does not yet have an official diagnosis of an Autism Spectrum Disorder began questioning himself. His last comment on the thread before I read it pulled at my heart metaphorically and inspired this entry.

“i'm falling down the 'am-i-really-autistic'
rabbit hole again, somebody pull me out.”
- Name Withheld, Facebook

The hurdles of getting a diagnosis as an adult are seldom worth jumping unless you need an on-paper diagnosis for school or work related accommodations, to qualify for disability-related benefits, or simply for your own peace of mind. Adult testing is mostly based on self-reporting and can be incredibly expensive. To date, most insurance companies will not cover it. As such, it’s very common for spectrum adults to either be self-diagnosed or diagnosed without specific testing by a physician, psychiatrist, or therapist.

Most of the information on autism is geared towards the parents of (most often male) autistic children; there is very little out there for adults, particularly female adults. The result of this lack of information and resources has been that many autistic adults stumble around in the dark blindly, trying to find their place in the world. I reject everything about Autism $peaks including the blue puzzle piece, but I find the more general rainbow jigsaw to be an accurate representation of autistic life—and not in the way most people probably think. I am not a puzzle to be solved, and I am not a puzzle piece that doesn’t fit. Rather, my spectrum diagnosis was a piece of me that linked a whole bunch of things about my personality together. Suddenly I ceased being a weirdo, a freak, quirky, moody, and anti-social. Suddenly, I was normal—just my own brand of it.

"I am not 'retarded.'
I'm just as special as anyone else,
maybe even a little bit more.
People who call me that are ignorant
fools or retarded themselves."
- Luke, The Story Of Luke (2012)

For many adults, the initial recognition of their autism can be a relief; however it can also be a source of pain, confusion, and constant questioning of one’s identity. Many spectrum adults, including me, find themselves at the start of their journey over-analyzing every feeling and reaction they’ve ever had. They desperately dig through their childhood memories, looking for autism or looking for experiences that ‘prove’ they are not autistic, depending how they feel about being autistic. 

This panicked rifling through your mind can cause incredible amounts of stress, depression, panic, guilt, fear, and can even induce PTSD if the individual was raised in an environment where they were punished verbally or physically for autistic behaviors. They might struggle with not feeling “autistic enough”, especially if their conversations about autism mostly take place with NTs (NeuroTypicals: non-autistics) or if they have few to no conversations about autism at all. Their behaviors may not match up with the behaviors of other autistic people they read about or know, and they may question the entire state of their being based on that point.

And into the rabbit-hole we go, and we can only hope that someone who cares will reach a hand down and help us climb out before we fall in too deeply.

And so this is my hand, reaching out to anyone who is gazing into that abyss and afraid they will slip. This is my hand, with all the love in the world and every inch of my soul, reaching out to hold onto you—whoever you may be—and help you glimpse the light even if just for a moment. Because sometimes that’s all you need; one moment of someone caring enough to reach out. I’m reaching for you, my autistic brethren. You are not alone.

This guy's walking down a street when he falls in a hole.

The walls are so steep, he can't get out.
A doctor passes by, and the guy shouts up,
"Hey you, can you help me out?"
The doctor writes a prescription,
throws it down in the hole and moves on.
Then a priest comes along, and the guy shouts up
"Father, I'm down in this hole, can you help me out?"
The priest writes out a prayer,
throws it down in the hole and moves on.
Then a friend walks by.
"Hey Joe, it's me, can you help me out?"
And the friend jumps in the hole.
Our guy says, "Are you stupid? Now we're both down here."
The friend says "Yeah, but I've been
down here before, and I know the way out."

- Leo McGarry, The West Wing (2000)

Please take this to heart.

NOBODY gets to define autism beyond the diagnostic criteria except the autistic person themselves. (And while I will mention again how much I despise and am against everything autism $peaks stands for, their coverage of the DSM-5 criteria is a helpful little page and you can view it here, although be sure to note that the Autism Spectrum criteria is a bit further down the page.)

Talk to other adult autistics. If you don't find other autistic adults in varying numbers that share any given behavior with you, I will film myself eating my fancy black and pink fedora and post it on YouTube. I promise you that.

The major mistake that people in general make is thinking that autism is a box, and you can just put all the autistic people inside the box and they'll all fit nice and neat, filed away quietly. But in real life we are every bit as varied as anyone else. A popular comparison I see (and a major point of the conversation that sparked this entry) is the various forms of stimming, because we have been told over and over again that stimming is simply rocking or flapping your hands.

The truth is that "stimming" is any repetitive motion brought on by extreme emotion: both negative and positive.

I have good stims and bad stims. Some of them are even the same stims. I might rock to comfort myself in a period of anxiety; I might rock because I’m so excited about a new dinosaur documentary that I can't even contain myself. When I am stressed I gnaw the heck out of a pacifier. When I am happy I clench my teeth and stretch my head to one side slightly. When I am happy, sad, bored, lonely, excited, in physical pain, sleepy, grumpy, Dopey, or Doc--or pretty much any other emotion at all (meaning I do it constantly), I clench my toes and sometimes hands.

When I am happy, I tap or drum my hands on my thighs or knees in a somewhat random pattern; when I am agitated I tap my hands on my thighs or knees rhythmically. In my autism, happiness is chaotic in a wonderful sort of way that I can never put into words, and rhythm, routine, and patterns bring me immense comfort when I am upset. That doesn’t mean all autistics function the same way. It also doesn’t make me any less autistic that my good feelings are chaotic and messy and some other autistics may experience good feelings in the same rhythmic and predictable way that I experience bad feelings.

Don’t ever make the mistake—any of you—of questioning your self-identity simply because you experience something differently from someone else, or because a behavior, urge, or feeling of yours isn't written down in a textbook somewhere.

Ole Golly from 'Harriet the Spy' (1996) once said, “There are as many ways to live as there are people in this world.” Autism isn't any different. There’s as many different ways to "be autistic" as there are autistics. You are you and you are wonderful and unique and there's nobody else exactly like you and there never will be. But I can guarantee you there are thousands of people, if not more, that share any given behavior, feeling, or urge that you have; whether they are autistic or not.

And if that still isn't enough to convince my fellow auties of how awesome you are, then it's time for you to read this beautiful article and remember that you are super great, and autism can be and often is every bit as joyful and wonderful as it is frustrating and upsetting.

There is no right way to be autistic.

There is no "good" or "bad" autism.

There are no "good" or "bad" autistics.

There are just good and bad days. Good and bad feelings. Good and bad events.

Life, and how you survive it.

 note: you may not reprint this blog entry anywhere
without my express permission. you may of course
share this link anywhere you wish--in fact, please do!

via icanhas.cheezburger.com