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

If You're Unhappy & You Know It, Shut Your Mouth

there's been a lot of discussion lately about assisted suicide, a lot of it stemming from a movie that's coming out called "me before you" which i know nothing about and so will not comment on directly. instead, i want to talk about how disabled people talk about and treat other disabled people. id like to talk about the voices that go unheard in our struggle to be treated with respect and dignity, and mainly id like to talk about the multitude of people, both SJW's and disabled people themselves, who post about how outraged and indignant they are that someone could even hint at the idea that disabled life isn't worth living.

i think people should be a little more cautious in their outrage and indignation with this. i think that in a lot of ways, other disabled people are sometimes even worse than healthy people at criticizing and silencing other disabled people. i think there's a really, really bad habit in our community of being offended when someone else from within feels they would rather be dead than live with their disability the rest of their lives. just like most other marginalized groups, we are very good at eating our own. sometimes we go so hard with the "im proud to be a tubie/wheelchair-er/survivor/warrior/whatever" stuff that we can make other people who are those things feel completely invisible because they don't feel that way and are being told they should. we silence them by saying, "youre not doing anything for the cause with all your talk about disability sucking. sit down."

i didn't see it before, but it rapidly became very clear to me when i tried out various support groups/forums for the surprise colostomy i had found myself left with. i didn't stay in any of them for long, because i very quickly realized that if anyone else legitimately felt the way i did about it--that i would rather be dead than live with it--they weren't speaking up. in fact, it was taken as a personal offense that i would even dare think of such a thing, and i was instructed unanimously to seek psychological help, though the tone of this 'advice' ranged from sympathetic to downright nasty, including one person who encouraged me to go ahead and die because people like me are the reason there's a stigma around ostomies and everyone else would be better off without my voice being heard.

and while i understand academically at least, why people might get their feathers ruffled, i dont understand it on a personal level. it is not one and the same thing to say "i personally do not feel that MY life is worth the price tag i have to pay for it" and "everyone else in my situation isn't worth the price tag either". people react as though it is a given that if you dont feel your own life is worth living because of Reason X, theirs isnt either. it doesn't seem to come up very often that while you may share a reason, you don't share a life. and thanks to the popularity of the pain olympics, we can't point out that our lives are different, because its throwing down the gauntlet for everyone to tell the best sob story that ends in triumph over adversity.

i have never felt so alone in my life as i have since december. there is *nowhere* for me to turn where i can feel accepted and validated. my feelings about the bag have not changed, i merely stopped talking about them because all it has brought me has been grief and guilt and arguments. it turns out a couple of choruses of "im unhappy and i dont want to be here" is even more taxing to the soul than "99 bottles of beer on the wall". of course there are people who have been very supportive of my feelings, but they aren't dealing with my situation, and there are people in my situation who are not supportive of my feelings, and there has been no overlap between the groups. even the people ive spoken to or post-lurked on who also hate their ostomy still have other factors and seem to feel the reward is worth the cost. i dont. i never have, and i never will. the one person i love more than anything is why i stay--because i love her, and almost losing me nearly killed her as well, and i care about her well-being too much to voluntarily do that to her again. but i am not grateful to be here.

and that doesn't mean i dont want to live, it means i dont want to live like this. i don't want to care for this thing, i don't want to live with the godawful side effects and constant misery and pain. i don't want to have it on my body. and frankly, it upsets me that anyone could tell me that it makes me ungrateful, it makes me selfish, it makes me a blight on the disabled community because my god what kind of message am i sending. i didn't think of myself as a messenger, but i am constantly told otherwise. id better change my tune or stop singing, because the disabled community at large is more important than me. i am not the greater good, and if i won't sing in harmony with the rest of the chorus, i need to sit down.

a huge factor in play here is also that i wasnt given a choice in the matter. i hear a lot that im not alone in that, that nobody would choose to have an ostomy, but im not saying i didnt have a choice because the alternative was death--that's just having a choice you don't like. i didn't get to decide to live or die, that choice was made for me. i never consented to having it done. i had no idea that it had been done. it had never even been something that was ever brought up by any of my doctors in any of my appointments my entire life. it was never considered or discussed, and while i have a lot of fears regarding things that could go medically wrong with me, i never feared this.

but i didn't find any allies even among others who woke up one day to find themselves suddenly with this bag they weren't prepared for. they were all happy to be alive, too. they all said i needed to "get some help" and assured me that how i felt would change, and i'd learn to appreciate the bag and discover that i could still have a super awesome life. i would adapt and find a new path and be grateful to still be alive. i know it was well-intentioned, but it didn't bring me up. it felt like i was just sinking deeper into the quicksand and everyone else was standing around the pit talking about how they swam out of it and i would be able to do it as well, instead of reaching out to help me. maybe they all really were just coping that well with their stuff and something is wrong with me. or maybe they're not coping that well at all and they're afraid if they tried to help, theyd realize they were still in the pit all along.

cause the thing is, when the bulk of the disabled community screams as one voice about how proud they are to be disabled and what a warrior they are and how strong their will to live is.. the ones who arent screaming find themselves on the outside of the community. like theres something wrong with them because theyre not proud of their struggle or because they can't overcome their disability and it looks like everyone else has, and everyone else is handling it better than they are. so as a group we agree to present a united front by pretending we're standing on the edge of the pit even if in reality we're up to our eyeballs.

when healthy people shut you out, it sucks, but hey, we already knew we weren't part of that world anyway and we can just go meme about it and laugh with our fellow spoonies. there's a solidarity in being a marginalized group. but when its other disabled people shutting you out, you find yourself *very* alone in the world. at least the ring around the pit is talking to you while you sink so you're not drowning by yourself.

 i wish more people would consider the implications of how what they're saying makes some of their fellow spoonies feel. because to me, as i scroll through dozens of posts about not just this movie, but just in general about ableism, about pride, about struggle and the inevitable triumph, overcoming, fighting, and warriors, what i hear is a cacaphony of voices all telling me that my feelings are offensive and stupid and they dont matter because there's a larger picture. there's something*wrong* with me because i can't put on a smile and a tshirt that says "proud to be an ostomate" and stop making people uncomfortable by being honest.

it reminds me  of how i felt when i figured out that i was gay, and i was constantly on guard against letting anyone know that. the real me was locked away inside, because i had to protect her even though i was ashamed of her and wished she'd just stop being awful and go away. and all these years later, ive found myself back in the closet again, lying to everyone and swallowing my truths so that i wont be rejected for feelings i can not change or control. its fucking lonely. and while obviously im *glad* that most people find a way to overcome their illnesses, adaptive devices, and cyborg parts, or at least make peace with them, that simply isnt true of everyone. it feels awful enough to spend every minute of every day wishing for an end to this perpetual physical misery without also feeling like you're a terrible, selfish, broken person for not being able to cope with it better.

we need to make it okay to not cope. we need to make a safe space for people to say, "im not coping" without being told theres something psychologically wrong with them and they need to be medicated. we need to listen to each other and really, truly care what the other person is saying. we need to recognize that its OKAY to not feel like a warrior, that its OKAY to not be comfortable in your own skin, and that its OKAY if its not for reasons listed in the DSM. we need to make it OKAY for people to talk about death, and to want it to happen on their own terms. we need to make it okay to not be okay, and we need to stop making the situation worse by telling people who aren't okay that they need to shut up and stop making disabled people look bad. if we want healthy people to stop looking at us as poster children, i think a good start would be not looking at each other that way.

i don't want to be expected to live up to anyone's standard of disability or illness--healthy or otherwise.

im not a tubie. im not an ostomate. im not a spoonie or a GPer or a mito warrior. im not sick. im not disabled. i am not a spokesperson or representative of any of these communities. im just me. im just a girl with a lot of medical problems and no fight left in me. im just a girl who isn't coping but does a really good job pretending that she is. im just a girl being held prisoner in a body that won't work. i will never, ever be able to have the life that i want, and i do not want the life i have. i dont want to pay the price tag thats attached to this beating heart--but im doing it anyway. im just a broken girl who's still *here* and wants that to just be enough.

im just me, and i am not okay.

okay?

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.

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

"there is no mountain i’ve found here that i can move.."

when it rains, it pours. i am barely holding my life together with both hands. my SSI income is just barely enough to cover my rent with enough left over for a coffee or two if im lucky. and today i received a letter from my landlord stating that there will be a 4% increase in my rent. because clearly i'm not already paying far more per month than this tiny, cramped apartment with a multitude of shady neighbors moving in, no handicapped parking, and a flight of steps that seems to get longer every time i have to climb it.

i haven't gotten my tuition refund yet so i went to student accounting on tuesday to ask why. they screwed up and something was checked off as full time even though i'm half time JUST LIKE LAST SEMESTER, and even though my tuition bill and financial aid letter were completely in line with half-time. i was expecting this money *last week*. i said, how long until its disbursed to my bank account? she goes, 3-4 days. i'm like.. my bills are already overdue.. i've got a shutoff notice on my electric cause i'm a month behind.. her response? "start calling family." i just looked at her for a minute and then said "i don't have any." because that's much simpler than explaining that my family is poor too. that i'm not like these 18 year old kids who can just pick up a phone and have a wire transfer in ten minutes. do you not think that i thought of asking my family already? i've cost my grandmother enough money because of my shitty health.. and even she doesn't understand exactly how much all the OTC things i need cost. there's all sorts of things that i need or have needed that insurance won't cover. she wanted to know why i had to buy my walker out of pocket. well, i have no reflexive response in my left leg and both legs frequently buckle while walking. but we don't know why yet. of course everyone suspects mitochondrial disease, but it's not an official diagnosis. and nothing else that i'm diagnosed with at this point is justification in medicare's eyes for a walker. i take benedryl very often to help with my allergies and nausea. it works fantastic and it's much more gentle than any prescription allergy med i could take.. but it means i have to buy it myself. tegaderms for my pain patches. adult diapers. organizational shelving baskets and drawers to organize the insane amount of medical supplies i have as well as keeping dangerous things out of reach of my very curious cats.

how nice it must be, for people who can just ring up mommy or daddy every time they need money. when i ring up my grandmother for something it means *she has to go without* so i simply don't do it unless its a serious necessity. my grandmother has spent her entire life sacrificing for this family and i am shouldering a tremendous weight every single day of my life over how much i'm costing her financially, and how much i am costing my entire family
(not to mention everyone else in my life as well) emotionally and mentally. before i got so sick i had a handle on things for the most part. after i managed to beat back all the false diagnoses (including bipolar disorder, schizophrenia, and dissociative identity disorder) and get off the 17 psych meds i was on, and i was finally a functioning human being. six years of my life are *blank*--i simply dont remember them thanks to all the medications i was on simply because nobody considered the idea that i might be autistic until well into adulthood. i was officially diagnosed with asperger syndrome about two years ago and the only psychiatric medication i take is something for anxiety now. i've made huge strides and i turned my life around. i worked hard to get myself on a positive trajectory, to become a person who accomplished things. a person who mattered.

and now everything is broken. it's all falling apart. i can't survive on my own, and all i am doing is causing the people i love pain and suffering. i cannot think of a single person who wouldn't be at least slightly better off if i ceased to exist. all i do is cost money and cause worry. i'm a walking breathing human shaped burden and i hate myself for it.

my grandmother. my mother. my sister. my brother. my aunts and uncles. my cousins. my friends. i *cost* everyone in my life in one way or another. i don't understand how something so worthless can cost so very much. but everyone would be better off if i got hit by a truck tomorrow. people would grieve and then move on with their lives just like everyone does when someone dies. world keeps spinning, life goes on. i wish i had it in me to remove myself from the equation, but i dont. so ill just keep on going and infecting everyone around me like the plague, and sitting here uselessly while they suffer.

Why you don't adore me?

Maybe nobody loved you when you were young
Maybe, boy, when you cry, nobody ever comes
- Sara Bareilles, Machine Gun

i want to talk about internet fakers for a minute.


it's been a big issue in the health community at large and it's a dicey situation. some people really are sick but exaggerate, some people aren't sick at all (physically). a big issue in the health communities to start with is what i like to call the Pain Olympics. this is where people compete with each other to see who has it worse, who's sicker, who's got better pain medication, who's stronger, who's braver, who's had more to overcome, who has more conditions. i am not really going to delve into that as i feel that is a topic that merits its own post. but given that this behavior is so common, it's often hard to weed out the people who are flat out lying from the people who are just really unlucky and/or just have an obnoxious need to be "the sickest".


it all comes down to the same basic thing, though. attention.there are many kind people on the internet, especially in the health communities, that want to give emotional support and  sometimes send gifts to people whose health journeys they follow. and the worse you are, the more attention you get. more page likes, more comments, more presents. this is appealing to people who crave attention. and for a physically healthy person who wants attention, pretending to be sick is enticing because online they can get all of the support, attention, and gifts without actually having to suffer.

the terrifying thing is that people like this never, ever stop. they get caught online or in real life, and they just move on and start all over. some more deviously than others. the latest faker making the rounds, who goes by Priscilla Louise Shaw, had the sheer audacity to completely copy and paste an entry about a battle with sepsis from a friend of mine's blog. this comes quite awhile after she was outed from the gastroparesis community. but for some reason she thought that people wouldn't remember her, i suppose, and so she has attempted to try to get back into the GP community.. by stealing a "status update" from a blog that is very well known in the GP community.

now, this woman it seems (if she's a woman at all) is dumb enough not only to continue using her name (if that's her real name at all) but also try preying on the same community more than once. thankfully, this makes her an easy faker to cope with--everyone knows she's lying, she's not allowed in the groups, and so the best she can do is try to drum up support on her personal FB and hope nobody in her real life calls her out on her BS. not all fakers make these very obvious mistakes, though. there's a lot of different approaches people take to faking. priscilla's is certainly the dumbest i've seen yet.

then you have people like pearl gannon who are also dumb enough to use their real name, but hop communities--and in pearl's case, are faking it in real life as well. pearl is also looking for a lot more than support; she is always "fundraising" for one reason or another, including trying to fundraise to pay for a service dog that she was supposedly getting from an organization that, it turns out, does not charge for their service dogs. when confronted with that information, she changed her page to say that it was to cover "travel expenses" for her to go to the organization.

then you have people like cara goodman, who after being caught faking cancer and AIDS both online and in real life, move on and create a whole new identity before striking communities again.

occasionally you have someone that stops doing it because they haven't got a choice (carissa hads/james puryear, who is in jail but not for faking illness on the internet) or because they are legitimately getting help for their issues (some of the stories on the warrior eli hoax blog, although who knows how much is true and how much isnt, as taryn [who runs it] is a pretty good liar herself as demonstrated here and here).

and then still others like karen murphy get caught, disappear from the internet, and are never heard from again... that we know of. my theory is these people also come back, but do a better job hiding their lies the next time around.

it's a terrible trend and it seems to be on the climb. (or maybe identifying fakers is on the climb. or maybe both.) i wound up taking a step back from the "finding fakers" game because 1. they never stop. 2. there's simply too many people that people are suspicious of and want investigated and half the time its just because they dont like the person or feel they ask for donations/gifts too often. 3. it's very difficult to find the truth. you have to count on someone screwing up and telling stories that dont match up or dont make sense medically, or stealing pictures or words from someone else. there's no way to get access to their medical records so there's no way to tell whats REALLY going on with them (as in the case of karen murphy, where so many are presuming that she has an eating disorder when there's no evidence to suggest she does. she may well be physically ill but we'll never know, and her page was a definite scam.)

and finally 4, which was mostly what i wanted to write about but i got lost in my own words again. there are always going to be people who believe them. it's not logical. it's not sensible. it's baffling to those of us who grasp the awfulness of what they've done. but there are always going to be people who believe them despite all the evidence. and there are going to be people that know they are liars, but stay friends with them anyway, mostly claiming altruistic reasons. (though im not sure how stroking someone's back and saying "its okay that you did this." is altruistic, it seems counterproductive for a person that needs mental help.)

in my case, the people from #4 were what finally drove me from investigating potential fakers. i was getting harassed and PM'd repeatedly regarding posts i made about both pearl gannon and karen murphy (who ironically i had nothing to do with and was in fact a victim of hers myself) and cara goodman (whom i also did not uncover, but i did re-expose her and also have been acting as liason-slash-mouthpiece for her most well-known victim and one of the sweetest people i've ever been lucky enough to know, catsnotcancer, so her side could be heard without her getting the harassment), and it got to the point where i was getting harassed every minute i was on facebook. so i left all that behind and made a new account.

i have a LOT of experience with this sort of thing and the best advice i can offer to anyone is to unfriend and block known fakers, and if someone on your friends list makes you wonder, tells stories that dont make sense, etc--beware. im not saying they're faking. i know a lot of people question a lot of things in my life, simply because i don't share all of the details and occasionally that works out so it looks like theres a "hole" in my story. so it can be innocuous. but guard yourself. especially if someone is asking for donations or gifts. if someone posts one time, you know, "this is my address if you want to send a card or something, that would really make me smile!" that's fine. but if someone is posting constantly asking for gifts and money, if disaster seems to strike on a regular basis.. if disaster seems to strike right around a gift-giving holiday constantly.. if every other day it's a big dramatic thing about whether they're going to live or die.. if it seems like its just TOO MUCH tragedy for one person.. these are all things that should raise a red flag and at that point all i can say is.. pay attention.

honesty is easy. you dont have to remember what you said. lying means you have to remember the details you gave. it's a juggling act. and eventually if someone is lying, they're going to drop a ball somewhere. and if you're paying close enough attention to them, you'll see it fall.

for a really well-written read on this phenomenon which has been coined munchausen's by internet, check out this article by cienna madrid.