Sunday, April 29, 2018

Autism Bewareness Month

It’s that time again.

The month of relentless puzzle piece imagery, blue lights and thinkpieces detailing the horrors of having an autistic child written by histrionic “warrior parents” abound. What should be a platform for actually autistic people to speak and advocate for themselves has been co-opted, and to express any dissent for problematic “awareness” campaigns is an invitation for an onslaught of haughty You’re Nothing Like My Child comments.

I was asked to write what I would like people to know about Autism Awareness Month as an autistic person, and quite honestly, the thing I most want people to know is that I am tired.

I am tired of defending my basic humanity and my right to exist.

I am tired of being told that I’m not like your child because I can write and communicate well, which is something that I’ve been working on my entire life. Your child has not (yet) attended an academically rigorous college with a strong focus on writing and speaking, so no, I wouldn’t expect them to be just like me in that regard--just like I wouldn’t expect any child to be as proficient in written communication as I am. Your child and I share a neurology, and that makes us more alike in ways you will never truly understand if you are not autistic.

I am tired of being told that I should call myself a “person with autism,” as though it’s some kind of accessory and not a fundamental aspect of my entire being. If you can’t remember that someone is a person without having to say “person with ____ ,” that’s a you problem. The overwhelming majority of autistic people prefer identity-first language, so it’s time to stop paternalistically insisting that we adhere to your conceptualization of autistic identity when it’s not your identity in the first place.

I am tired of living in poverty. 90% of the adult autistic population are un- or underemployed. All of us have valuable traits and skills, but even autism and disability-related nonprofits are guilty of not making accomodations for their autistic employees. So-called “Pre Employment” screenings that are a required part of many online job applications nowadays unfairly weed out the neurodivergent--they supposedly have “no right answer” and want you to answer truthfully, but unless you lie about your social deficits, you’re not getting an interview.

I am tired of being told I have no empathy by people who make no effort whatsoever to understand how an autistic person might express their empathy differently than a neurotypical person. I am very often overwhelmed by how deeply and viscerally I experience emotion, so it is absolutely necessary that I distance myself at times or else I would be in a constant state of emotional meltdown. Very often the people accusing us of having no empathy show none themselves when they vote to take our Medicaid, SSDI, Section 8 or SNAP benefits away, which are literal lifelines for the neurodivergent and other disabled folks.

I am tired of being told that I’m too “high functioning” to understand what “real” autism is. Being perceived as “high functioning” is its own kind of special hell, as I’m expected to have no deficits whatsoever. I’ve spent my entire life masking my autistic characteristics just to survive, and I am burned out. I can do just about anything the other neurotypical kids do, but it doesn’t mean I don’t have to spend days recovering from those things, nor does it mean that I never have meltdowns, go nonverbal, or self-harm when pushed beyond my limits. I struggle immensely with many aspects of adult life because of my executive functioning deficits even if I appear “normal.”

I am tired of the erroneous belief that autism only affects boys. From respected professionals in the autism field dubbing autism as an “extreme male brain” to lighting it up blue campaigns, the message is the same--autism is condition that predominantly affects men and boys. Many diagnosticians aren’t trained to assess how autism is perceived differently in women and girls, so they go undiagnosed and unsupported--many women only get their diagnoses when they have a child who is diagnosed. It’s even evident in popular culture. With few exceptions, autistic characters on TV are young, mostly white males like Sheldon Cooper (The Big Bang Theory), Shaun Murphy (The Good Doctor), Max Braverman (Parenthood), Sam Gardner (Atypical), and Abed Nadir (Community). There have been female characters such as Temperance Brennan (Bones) who are autistic-coded, but they are never formally diagnosed and are viewed more as cutesy amalgams of social awkwardness than nuanced and complex beings.

I am tired of the pathologization of autistic behaviors, most especially of “Quiet hands.” Stimming is a form of emotional self-regulation, and there is nothing inherently wrong with it. Forcing kids to stop harmless stimming behaviors is setting them up for failure, as they won’t have an outlet for nervous energy. Accept the comfort of your child over the perceived “weirdness” of the behavior. Allistic (non autistic) people stim all the time by tapping their pens or cracking their knuckles, and we don’t force them into compliance training over it. Autistic women are statistically very likely to be victims of sexual assault, and training them to be compliant and quiet for someone that has power over them is making them into an even bigger target.

I am tired of a lot of things, clearly, but what is most exasperating is that my voice and the voices of actually autistic people are continually silenced by mainstream “awareness” campaigns like Autism Awareness Month. We are the real autism experts because we live and breathe and feel and think with our autistic brains every day, but we are almost never included or consulted by parents, providers, or advocacy organizations. For many autistics, myself included, April is just another painful reminder of our marginalization from mainstream society, so we created our own campaign: Autism Acceptance Month. We wear #RedInstead, we donate what little money we have to autistic-lead self advocacy organizations, and we celebrate the beauty of neurodiversity and the inherent worth and importance of every autistic individual.

So many of us are so, so tired, but we work every day to make the world a little less terrible for your autistic loved ones because none of us want future autistic generations to suffer the indignities that we suffer. We suffer the slings of “You’re not really autistic” and “You’re too high functioning to speak for my child” because we truly, genuinely, and deeply care for your child. So this Autism Bewarness Month, please consider returning the favor by supporting actually autistic people, whether it be by supporting an autistic-run advocacy organization, advocating for more inclusive employment policies at your workplace, or even something as simple as retweeting or resharing an actually autistic person--a blog, a website, a video, interview, whatever. We expend a lot of emotional energy creating educational content for neurotypical folks, and very few of us get paid to do it. So please take some time in the remainder of this month and beyond to to listen to and engage with autistic activists without the needlessly defensive “You’re not like my child.” We are like your child, we are fighting for your child, and we are forever struggling in a world that doesn’t see our compassion, our insight, our brilliance, or even our full humanity.

Thursday, August 3, 2017

Why I Fight

It's been nearly a year since I last updated, and honestly, not much has changed.
For a brief shining moment, I thought things were getting better.
No such luck.

I'm still broke.
Still stuck at home.
Still in agonizing pain.
Still drowning.
Always drowning.

I do have to give myself some credit, though--I've been reading my previous blog entries, and I have definitely grown a lot as a person, as a writer, and as a disability activist. Honestly, some of my earliest writings make me cringe-- Choosey Moms Choose Selective Abortion--but I think deleting them would be dishonest in a way. I think it's important to not shy away from the shitty things you've said and done, because they're not just a reflection of how you've evolved, they're also extremely humbling. They illustrate that you were once as ignorant as the people you're trying to educate, and a reminder that no one is completely free of prejudice, not even yourself. Rooting out ignorance and prejudice is not a destination, it's a journey, and there are folks along the way who will challenge you in different ways to be and do better. Embrace them. Embrace yourself.

So while this whole Everything Hurts and I'm Dying thing I've had going on for me since graduating in 2011 has made me a better, more compassionate (and, let's be real, more righteously angry) person overall, it's also slowly chipped away at my will to live. To clarify, I'm not actively suicidal, and I haven't been for a very long time, but as long as I'm in this much pain with no access to pain management, the suicidal ideation is always going to be there. And like I've embraced pain as a daily reality, I've embraced suicidal ideation. I honestly don't think it's something people can truly understand unless they've experienced it themselves, so it's not like I advertise it, because anything relating to suicide or self-harm is a red flag to people. But when you have the luxury of knowing that people of your neurology die by fifty, mainly by their own hand, it weighs heavily on you.

How do you go through life knowing that in all likelihood, you will die early and by suicide, when you know your worth and that you have so much to live for?

Looking at the available data, my story is all too common; most autistics live with relatives for upwards of ten years following graduation, living in poverty because of a lack of access to gainful and sustainable employment. I live with several diseases, most of which are very common among the autistic population. Everything hurts, and everything is hard, and I'm tired. Not just sleepy, fatigue tired, though I certainly am that--I'm tired in my bones and in my heart. I'm tired of having to fight twice as hard as my typical peers for things they take for granted. I'm tired of having to depend so heavily on other people, and having those people throw ultimatums my way when I can't live up to their impossible standards because I literally fucking can't.

I'm tired of the shame I feel when I whip out my EBT card.
I'm tired of the suspicion I get when I show up at the ER in excruciating pain, because they know I don't pay a copay with my Medicaid state insurance.
I'm tired of loving people whose politics actively harm me.
I'm tired of all the "you're not like thats" I get when I challenge people on their shitty views of "welfare" (an annoying, inexact term) recipients.
I am like that.
I am the person you call "moocher."
I am the person you call "lazy."
I am the person you call "entitled."
I am, I am, I am.

I'm tired of the shame and humiliation I feel when I run into people and they ask me what I'm up to these days.
I'm sick of lying and pretending like my life and my body aren't falling apart.
I'm exhausted by all the well-meaning "But have you tried yoga?"s.

I know what I need to manage my pain, but it's being denied to me because Teh Heroinz.
Because apparently it's better to risk the suicides of untreated chronic pain patients than it is to possibly have them become addicted or dependent upon opioids, despite the fact that most pain patients manage their pain on the same dosage for years, and many don't actually experience a "high" because it literally just manages the pain.
And I'm tired of allllwaaayyysss having to qualify my statements with "I know that opioids are addictive, but..." because I self-tapered for years to prevent myself from becoming chemically dependent upon them, because I know I have a genetic predisposition to addiction.

For real, I am just so fucking tired.
And I'm tired of being tired.
But every time I try to change my stars, I get a big sucker punch from Reality.

Catch a break and finally move into my own place at a job that doesn't make me want to actively kill myself?
Lol, poverty wages and bankruptcy, because VISTA is problematic as hell.

Finally find a job at an autism nonprofit after being unemployed for nearly a year after my car accident?
Lol, got fired for being autistic.

Feel completely broken by life because where the fuck do you work as an autistic if an autism charity fires you?

Desperately need gym access with a pool because that's the only thing that has truly managed your knee pain?

Opportunity to be on BBC America show that places neurodivergents at jobs that play to their individual strengths?
LMAO no, you're too high functioning.

Finally think you're catching a break because a job you'd actually be really good at opens up where your friend works?

And the worst of all?
Being accused of "complaining" when I speak out about all this bullshit.
Because if I just thought positively, then The Secret and Oprah would happen and everything'd be hunky-dory.
People really don't seem to understand that I don't fucking enjoy spilling my heart out in front of everyone.
It takes a lot of fucking strength to be so fucking vulnerable all the time.
I won't say I don't do it for myself, but that's honestly not my primary reason.
I do it for you.
Yes, you.
Hi there.

Right now, your life might be amazing.
Your might not feel 100% comfortable in your body, but it more or less works like it's supposed to.
And that's great for you.
Until one day, it doesn't.
Something goes wrong, really wrong, and all of a sudden, you're a stranger to yourself.
A stranger in your body.
Where do you turn?
Doctors don't believe you.
All the tests came back negative.
You're probably just stressed.
You should lose some weight.
Here is a poorly xeroxed worksheet on the fiber contents of fruits.

Here is why I do this: I have been that person too many times to count.
With literally every disease I have.
So when you tell me you are hurting, I believe you.

Endometriosis? Six doctors in as many years didn't believe there was actually a problem.
I nearly wept coming out of surgery--I just kept crying, "I knew it. I knew something was wrong. I knew it."

I believe you.

Hashimoto's? Nearly 100 pounds in four years despite no major dietary changes.
I probably just needed more fiber.
Just found out recently that after four doctors and four different thyroid meds and dosages, I'm still on the incorrect dosage for my height and weight.
I believe you.

Insulin resistance? At this point we're just maintaining, because according to my symptoms I've been insulin resistant for at least a couple years, so at this point there's already a lot of damage that was done.
Who could have predicted this, with all the diabetics in my family and that whole gaining 100 pounds thing that happened.

I believe you.

Fibromyalgia? Those pains started when I was ten.
You're having shooting pains up and down your legs? Well if you cut your arm off you won't notice.
Took ten more years to get diagnosed, because I just stopped talking about how much it hurt.
I didn't want to be "negative."
People don't like negative people.
Guess I'll just be sullen and moody instead as my body attacks itself instead of addressing the issue with medical treatment.

I believe you.

The thing that keeps me going through all this pain, other than my cats, is my sincere belief my pain can and will help others.
I can let them know they aren't alone.
I won't gaslight them or tell them they aren't overreacting.
I'll save them the same way that memoirs like Prozac Nation saved me.
I see you, I believe you, and I love you.
You are worthwhile.
You are worth fighting for.
When I feel like I can't go on living like this, I live for you.
When I can't fight for myself, I will fight for you.
When every cell in my body is on fire, I remember you.
You help give me perspective.
And I'll always love you for that.
And I'll fight for you with my dying breath.

For You.

[Image Description: Close up of Buffy the Vampire Slayer, petite blond with sad but determined eyes, with the quote "The hardest thing in this world is to live in it. Be Brave. Live. (The full quote should also say "For me" at the end.]

Wednesday, October 26, 2016

I Miss Carbs and I'm Sweaty and Angry and Everything Hurts but Now I Can Blog Again So YAY RANT AND CHICKEN PUNS AND EXISTENTIAL DREAD

Yeah so this is basically like a stream of consciousness post that probably doesn't really make linear sense even though I kinda tried to add some kind of logical flow to it but like WELCOME TO THE AUTISTIC THUNDERDOME FRIENDS LETS GET WEIRD AND EXISTENTIALLY UNCOMFORTABLE

Since starting on ADD meds, I've noticed a really dramatic change in my attention span. I think in the back of my mind, I've always kind of resisted my attention deficit diagnosis because I thought I was misdiagnosed, that it was just autism. But ADD is part of the autism profile, a pretty intrinsic one at that, and the difference I feel on this teeny, extended release dosage is marked. I'd been on a stimulant before my autism diagnosis, and whether it was the medication itself, the fact that it wasn't extended release (because I couldn't afford it as it was not available as a generic at the time), or if the dosage was too high, it pretty much just made me tweak out. To its credit, I did get some stuff accomplished--in all honesty, it's probably the only reason I graduated--but it took a big toll. I thought it was amazing at first, like I could see sounds and hear colors, but I also didn't sleep for about three days and my heart rate was probably through the roof. On my current medication, though, I can finally concentrate long enough to form coherent thoughts, and even blog for the first time in about eight months! What follows originally started as a Facebook post, but as I noticed how long it was getting and how I was kind of diverting from the actual article, I decided to just blerg about it. The post was a piece written by a weight loss doctor (to my knowledge, not a bariatric surgeon--a "traditional" non-surgical practitioner) about achieving long-term weight loss and avoiding the pitfalls of "The Biggest Loser," whose contestants overwhelmingly gain all their weight back (and more) and destroy their metabolisms. I shared with the following quote:

"If you want to succeed with long-term weight loss, it's crucial that you embrace both reality and imperfection.

Remember, too, that your best efforts will vary. Your best when facing a challenging time in life will be different from your best when everything is hunky-dory, just as your best on your birthday, or on a vacation, or at a holiday meal will require indulgence.

The truth is there will come a point where you can't happily live any better — where you can't happily eat less and you can't happily exercise more — and your weight, living with that life, is your best weight. In every other area of our lives we readily accept our best efforts as great, and we need to do that with weight and healthful living too."

It really resonated with me, because I'm in a seemingly constant struggle between desperately trying to lose all the weight I've packed on--nearly 100 pounds--and accepting and loving my body for what it is, what it can do right now, at this moment, and what it can be capable of.

I recently found out that I'm now insulin resistant on top of everything else: probable endometriosis (having surgery to confirm next week); Hashimoto's Disease, wherein my stupid immune system, rather than do its job, is attacking my perfectly healthy thyroid and slowly but surely destroying its function, which will require a lifetime of thyroid replacement meds (which have up to this point been fantastically useless at alleviating the fatigue, sweatiness and weight gain); fibromyalgia, which causes all-over body pain and fatigue, as well as general feelings of malaise and hopelessness; phantom chest pains; medically inexplicable stomach pains that I no longer seek treatment for, as I am treated as a malingerer; Severe, chronic knee pain that can't be explained by x-ray or MRI, which both came back normal--I believe it's arthritis, because both my grandmother and aunt have/had rheumatoid, and both had no indication of it in traditional bloodwork panels, x-ray, and MRI; and finally there's just good ol' depression and anxiety, my oldest friends--though I would say that I don't really feel sadness in my day to day life (mostly because I just look at dumb internet memes all day so I do a lot of laughing), but I do have an overarching existential dread type-deal because in looking to the future, I'm realizing more and more just how impossible the lives of disabled women who don't *look* disabled are, how insanely fucking rampant institutionalized ableism is, how I'll never escape poverty because I was set up to fail even if I wasn't disabled, all that jazz. Plus now I have these fun little panic attacks sometimes about being trapped in air vents, because why the fuck not.

So in an effort to not become full-blown Type II Diabetic, I've just begun a low-carb diet. I was originally planning on following a ketogenic diet, but it's extremely stringent--5% carbs, 25% protein, 70% fat. I may eventually work up to it if I don't have any success with a moderately carb-adjusted diet, but carbs are my jelly, my jam, and my peanuts. I basically bleed marinara.

I've technically only been on it for two days, and I've only been taking my Metformin (idk what it does actually but it's for Type II diabetics) once (supposed to be twice a day but honestly the side effects scare the bejesus out of me, the lady who read me my test results was like "LOL you will have it coming out of both ends but it should subside after a while"), but it's awful. Sugar is my everything. Sugar is IN everything. Honestly, the FDA really fucked us with that food pyramid of theirs--I know human nutrition is complicated, but christ on a cracker, 6-11 servings of grains, nearly all of which have some goddamn form of added sugar? Get everyone fat and addicted, then make it impossible for poor people to access more nutritionally wholesome foods, then shame the fuck out of them when they get fat and diabetic from the nutritionally deficient shit you peddle to them.


I know some of my frustration is from not fully understanding wtf "net carbs" means, or how fiber content offsets the total carb content, or not even knowing or having the faintest idea of ideal target percentages of what I'm supposed to eat--protein, fat, carbs. I know I'm supposed to snack on stuff that has 15g of carbs or less, and meals shouldn't go over 30g total, but what am I substituting for those lost carbs? Fat? Because I'm also reading that I shouldn't be eating a lot of fat. So, I should just be eating shitloads of protein? My issue with that is that most of my protein sources are beans and grains, which are carbs. I'm really not much of a meat eater, and I can't really afford to eat fish on the reg, which leaves eggs. I can get a dozen from Aldi for 79 cents, which is an amazingly good deal, but I'm also very cognizant of the horrors of factory farming. Being poor and dietarily limited has really highlighted in the worst possible way how dietary moralities are wrapped up in privilege. A friend of mine posted a referendum from her state that would force farms to not be huge dicks to chickens, which sounded awesome to me. But her point was that these things that seem so simple and easy and good can have unintended consequences--the consequence, in this instance, would be a cost increase that could potentially be prohibitive to folks living in poverty. Enter Moral Compass White Man, whose insistence that the possible inconvenience to poor people was a small price to pay for improving chicken lives. He reasoned that poor people could eat anything--beans! grains!--as an alternative protein source, neglecting to understand the complexities of poverty, human nutrition, differing dietary needs, taste, or the simple fact that those folks probably already fucking eat beans and grains because meat is expensive, and eggs are versatile and a dietary staple for many, particularly children, who tend to like simple, bland foods. I would fucking love to have my own chickens, to raise them with love and name them funny names like Roger and Francis/Ajax and Cluckers McRoosterface and let them roam freely and enjoy their fresh eggs without feeling like an asshole, but I'm just not in a position to do so. I don't know that I ever realistically will, but I'm cautiously optimistic. (Okay now I'm just thinking about good chicken names, so I'm gonna need like twelve chickens minimum--Johann Sebastian Bach Bach Bach, Anne of Green Gobbles, Kimmie Gobbler, Alice in Chains, Yippie Ki Yay Mother Clucker, and they will be my BOCKScar Children, omg someone stop me)

ANYWAAAAAAY this was kinda all over the place and my tailbone is killing me because I've been sitting upright for an hour so I guess I'll just end with this: the reason why I'm even attempting some facsimile of keto is because these people BELIEVE me. When I tell them that no matter what I do, I can't lose weight, they don't question me, gaslight me, or give me a goddamn poorly-xeroxed sheet of the fiber content of different fruits. No fucking joke, my doctor did that when I gained just ten pounds--so, 165 pounds as someone who is 5'8 1/2 or 5'9, depending on who does the measuring. I heard dick all about nutrition before I started gaining weight (in earnest, not ten pounds because of a switch from running to an elliptical because of knee pain), and I'm far more nutritionally literate than I was at 155, when I was eating a lot more crap because I was burning so much of it off because I ran so much.

I trust the folks who run keto and other "alternative" nutritional blogs instinctively because they treat me like I'm a person. They don't tell me all my medical problems stem from my weight, because they don't. The weight doesn't help, and in a lot of cases probably exacerbates my symptoms, but the problems were there long before I put on weight. When someone experiences a dramatic change in weight loss, they run a bunch of tests (as was in the case of my parental unit, who had developed latent type 1 diabeetus). When it's the opposite, they gaslight and shame you. It's no goddamn wonder fat people hate going to the doctor--I could be impaled in my abdomen, and they'd still tell me I'm having pain because I'm fat. And it's to the point where I actually want to lose weight before I see another rheumatologist, because I just can't fucking take the gaslighting anymore. My gym membership lapsed at the end of September so it's been nearly a month of not going to the gym, and I'm definitely in a lot more pain than usual, but what can I do? I've been unemployed for a full year. There's an amazing complex near my house that actually fulfills my exercise needs--aka not a tiny two person pool like my former gym, but THREE pools, two of which are heated, one of which is specifically for physical therapy--but it's $700 a year. My mom offered to pay before she knew how expensive it was, and I'm kinda hesitant to ask, because it's not fair of me to ask. Well, none of it is fair, really. Unfair City: Population Me, forever and always it seems. It's like I can't catch a single fucking break, and I have my AS therapist and my mom encouraging me to file for Disability, which I know will be a long series of being gaslit and denied and told over and over that I'm not X% disabled enough to qualify. Then there's the matter of also not fucking wanting to be on it--I WANT to work. Nobody graduates from fucking Allegheny and thinks, "Gee, I think I'll live at home for for the rest of my life in a shit town where I hate everyone and just languish for a few years until I just die inside! Yas!" I thought I was going to get an amazing job, set the world on fire, and pay my mom's house off for her. I was gonna grab the world by the balls, and instead I just wilted. My body imploded upon itself, and I learned just how fucking hostile the world is towards neurodivergence when I was fired from a fucking AUTISM CHARITY for being autistic. Where the fuck are you supposed to go from there? I would literally be homeless if it wasn't for my mom. And dead probably. I sometimes have panic attacks about having to surrender my cats because I can't care for them financially. I cry for no reason. I'm crying now. Because of something that I know won't happen. I know I have people in my life who would step in and step up and help me take care of my cats, even if that meant them fostering them for a while if I couldn't bring them with me to a relative's house. Logically, I know that, and I can sometimes bring myself down from that sense of panic, but not always. Not sure if that's more of an anxiety thing or a poverty thing--knowing that things can and do bottom out, that control is an illusion, that in an instant you can lose everything. It's actually kinda happened to me a lot in my life, but I think it's worse now that I'm an adult, because no one is legally obligated to care for me.

So anyway life is terrifying and I'm terrified and my body is actively trying to destroy itself but like I just jammed to 80s Pandora for the like two hours it took me to word vomit this out and in the interim I did put Pickles' name into a lot of the songs and she LOVED IT so there is that at least that I have going for me--80s cover songs with cat names interspersed throughout because OHHHH PICKLES IS HALFWAY THE-ERE, OHHH OHHHHHHH LIIIIIIVIN ON A PIIIICKLES

oh my god what even is happening

Friday, February 19, 2016


It's been nearly two weeks since the news broke about Kirk Nesset's sentencing, and I'm still processing.
I think I will probably always be processing.
Skeezy as he could be, I doubt anyone expected the level of depravity he stooped to.
Some people just can't process that someone they knew, trusted, and even loved could participate in the rape and exploitation of children.
Of babies.

Half a fucking million of them.

I obsessed over this for months.
Over the course of the past year, I've obsessively been checking news outlets and googling for any updates on his case.
It was all I could think about.

I chose to dig deeper into the case, to read the files and affidavits that were made available to the public. In a way I probably knew that digging deeper would make my pain and outrage that much worse, but I couldn't stop. I wanted to bear witness. I felt like I owed it to the half a million unknown souls.

After I read the affidavit, I spent the entire day balled up in the fetal position in my darkened room, unable to think, unable to breathe, unable to move. It brought up a lot of unwanted memories and flashbacks of my own abuse--something I've been working a long time to bury. I don't have access to all the memories, and even though that keeps me up at night some days, I'm almost thankful for it. I know something happened, and I know who did it. I know who was complicit in it. Even though there's a part of me that wants to know more, I'm thankful that my brain has blocked this part of my life from me. It's too much to bear.

The Kirk Nesset trial has brought out a lot of ugliness in my life. It's triggered memories and feelings of my own childhood sexual abuse. It's triggered memories of being physically assaulted, sexually coerced and emotionally manipulated as an adult. It's caused me to remember all of the times Kirk Nesset was predatory towards me, and how in the few times that I actually realized how wildly inappropriate he was being, I doubted my own judgement because I thought he wasn't capable of being shady because he was a respected authority figure. It's caused me to lose friendships--mostly tertiary people who in the long run don't matter much to me, but one in particular who I really loved and valued as one of my closest friends.

Everyone processes their grief and anger differently, and it's something I have to remind myself of when folks don't immediately jump on the "Fuck Kirk Nesset" bandwagon with me.

But some people are burying their fucking heads in the sand, and that is entirely unacceptable.

I was aware that Nesset had supporters in the Allegheny community, and I was subjected to a lot of their bullshit when I attended the community meeting in the wake of the initial report. "I had dinner with him, he can't be a bad guy!" was the most asinine, but the faculty member who stood up and said she supported Nesset because "we don't have the whole story!" even though he FUCKING CONFESSED TO THE FBI ABOUT WHAT HE DID and she was the GODDAMN CAMPUS NEWSPAPER ADVISOR was the absolute worst. Though I suppose in a way it was brave of her to be outright and forthcoming about her support, rather than sending letters of support to the judge more anonymously (to the community, I mean).

David Miller, tenured English professor, also publicly voiced his support for Nesset in a subsequent Campus Newspaper article following Nesset's sentencing. Miller, who was present for his sentencing, said he was impressed with the "compassion and deliberation of the judge." The Campus reported that Miller "felt the prosecution’s suggested sentence was unreasonable." It was originally reported that he would be sentenced somewhere in the ballpark of 10-15 years, but he was ultimately sentenced to 76 months, or a little over six years. It's a small cry from the mandatory minimum of five years, which is what a friend and I predicted he would get because of his status in the literary community. Miller was actually quoted as saying that he was "relieved that it wasn't more [time], because of fucking COURSE he did. White men of status always rally around other white men of status.

Well, David Miller, fuck you.
Congratufuckinglations on never being personally victimized by Kirk Nesset like so many of my fellow female classmates were.
Congratufuckinglations that your daughters were not among those half a million daughters whom he exploited.
Congratuguckinglations that you belong to the protected class, and that you'll never fucking know how absolutely fucking terrifying it is to be a woman or female-presenting in the world.
Congratufuckinglations on being in the protected class, I hope you enjoy it.

And look, I get it, not everyone wants to see Kirk Nesset's head on a fucking spike like I do.
And that's fine.
But there's a major goddamn difference between acknowledging him as a person and his obvious mental health struggles and still holding him accountable for his actions, and just outright excusing him, making him the center of trial when it should be those half a million unknown children.

One person who later unfriended me for views on Nesset disclosed that she had been sexually assaulted on campus, and that Nesset had been a source of support and comfort for her.
Honestly, I can't even imagine what it would feel like to know that the person who supported me through a sexual assault had participated in the sexual assault of children and babies.
I don't know how I would process that.
But see, that's the thing about psychopaths like Kirk Nesset.
They earn the trust of people around them.
They establish themselves in the community, and are viewed as pillars of respect.
That's how they get away with it for so long.

It's honestly entirely possible that Nesset's concern for this person was genuine--contrary to popular belief, psychopaths can form relationships and attachments to some people--and even if he was faking it, it doesn't make it any less real to the person who was assaulted.

I can understand why she wanted to sever our friendship, and I bear her no ill will.

I do, however, bear ill will towards faculty members who wrote letters of support for Nesset.
Who ignored or looked the other way at his inappropriate behaviors towards the female population at Allegheny.
While I didn't realize it at the time, there were faculty in the English department who advocated for my safety around him, who warned me in subtle ways that I didn't pick up on at the time.
I am forever grateful to them.
One of them just directly asked why I was always hanging around after hours--to see his little Pomeranian Ryan, of course--and even though it went right over my head at the time, I'm thankful that she was watching out for me.
Another just straight up told me to go home another time--I wasn't sure why she was being so gruff towards me, but I get it now. So to them, I say: thank you for helping me, for watching out for me and other young women.
I know of a couple instances where they reported him for inappropriate behavior, and that the Dean DeMeritt routinely dismissed them.
Thank you for doing the best that you could within a system that protected him and the reputation of the College above all else.
I've thought about reaching out to these women for some time to thank them, but I honestly don't know if they'd even remember me. I don't know how they would react.

There's one person in my life who I've been processing this with over the past year or so, and I am forever thankful to them as well.
A lot of folks have taken to tone policing me, or unfriending me, or ignoring me, which (beside the tone policing) are valid responses, because some folks aren't ready to engage or don't want to engage for whatever reason.
There is no right way to process this.

There is, however, a wrong way, and that way is to gloss over half a million victims and focus solely on poor Kirk Nesset, who, as it was nauseatingly reported in The Campus, "will probably never see his ailing parents as a free man."

To those (statistically speaking at Allegheny: white, male, tenured) faculty who wrote letters of support to Kirk Nesset:

Fuck you.

To those who turn their backs to the suffering of half a million victims because you had lunch with him or some shit and he seemed like a "cool dude" (actual fucking quote):

Fuck you.

To those who will never understand what it was like to live and learn under the shadow of a person who consistently violated the personal boundaries of his female students:

Fuck you.

Fuck your willful ignorance.
Fuck your silence.
Fuck your complicity.
Fuck you for your continued participation in the marginalization and victimization of women.

Fuck. You.

Thursday, December 31, 2015

The Heart's Filthy Lesson

Last Tuesday, one of the most important beings in my life died--my diabetic senior fatcat, Stormy.
I'd noticed him slowing down a lot in the last few years; taking steps one at a time, needing step stools (or upside-down laundry baskets!) to get up on the bed, being extremely picky about his food and the cleanliness of his litter box (having four cats, I am diligent about cleaning their boxes everyday, but I am not Superman and I can't devote all my time to cleaning every poo as it drops from their bums, but Stormy had Stormy Standards and if they weren't met he'd poo on the litter mat).
After laying in bed nearly all day because the house is freezing and there aren't enough boats, I went downstairs to feed the cats. Stormy wasn't sleeping on the couch like he usually would be, so I checked the kitchen and found him under the table, unresponsive.

For those of you that haven't had the pleasure of meeting Stormy, he is the kind of cat who purrs instantly when you show him anything remotely resembling affection, like making eye contact with him or booping his fuzzy tummy. For him to be unresponsive to me petting and picking him up and rocking him like a baby meant that he must have been in pretty severe pain.
I followed him to the litter box, where he peed on the plastic mat instead of the box, right next to a small pile of bloody, runny poo.

In my heart, I knew it was the end.

I hugged him close for a while and bawled. I finally mustered up the stength to call the vet's office, still sobbing, and told them my cat was dying. They asked if I wanted to come right away--I paused, because I didn't want to bring him in, knowing full well that he wouldn't be coming back with me, but I didn't want him to suffer.
He ended up purring once he was placed on the table. We said our goodbyes, and then he was gone.

Just gone.

I've personally never seen the purpose in open caskets--I know for a lot of people it's a final goodbye to their loved ones, but to me, that's not my loved one in there. It's just their shell, their container. They're not there anymore. They're in my heart, in my mind, and in the lessons they've imparted to me and the memories they've built with me, and I've always felt more comforted by that than by seeing their body one last time.

I stared down at his lifeless body.
I felt the shell, it's emptiness.
Something in me broke, and I completely lost it.
I kept shaking him, wishing it wasn't real, hoping against all hope that if I just nudged him hard enough, he'd awaken with his crotchety old man meow and then everything would be okay, and I wouldn't feel the oppressive and suffocating emptiness in my heart.

But life doesn't work that way.

It was two days before Christmas, and I couldn't face the thought of enduring the holidays without him. Don't get me wrong, I love seeing my relatives, and I love all the eating and laughter and weird Italian yelling that accompanies a typical Christmas in my family.
Knowing that I would be coming back to a Stormyless couch was too much for my heart to handle, so I just laid in bed for four days, in the hope of sleeping away my broken heart.

When I wasn't sleeping, I was on Facebook, desperately trying to occupy my mind with anything but emptiness. I was looking through that "On this day in the past" timeline, when my ex boyfriend popped up.
With another girl.
We'd been broken up for a little over a year, but seeing him happy with someone else hit me so hard that in that moment, I could barely breathe.
It's really rare for me to experience a feeling like that, and it really set me on edge.
We were fundamentally different people who could never quite figure out how to communicate with each other, and even though it took me way longer than I anticipated to get over our separation, I thought enough time had passed, that I was over it.

As it turns out, not so much.
And I have no idea how to cope with it.

It's not that I hate him, or that I don't want him to find happiness with someone else. Even though we're very different, he is a good person and a loyal partner, and I genuinely wish him all the best.
But it also rips my heart to shreds that he's with someone, and I don't fully understand why.

My life is so stagnant right now--because of my significant health problems, I don't have a job, and because I don't have a job, I don't have my own space or money, so dating just seems out of the question.
I am smart, loyal, and sexypants, and even though I may not always communicate it very well, I love deeply and fiercely. I tend to say "if/maybe" to marriage, but the truth is, it's something I really want and feel like I need. I don't feel weak or needy, but so many aspects of my life are so incredibly difficult for me as an autistic and as a female, and I want there to be someone to help me weather the storm.
I miss the feeling of partnership, and I long to experience it again, but I won't settle for someone who doesn't understand me or speak my language. I don't know if such a person even exists, but I'm holding onto that hope desperately because I just don't think I can do this alone.

My ex helped me heal the hurt that I experienced from a friend who took sexual and emotional advantage of me. It was something I never imagined I would get through, and I thought of ending my life on more than one occasion because it just seemed unreal to me how utterly dejected, dirty and awful I felt. I had struggled with these feelings for almost a year when one of my mentors (his mother, ironically) told me that once I find the right person and fall in love with them, those feelings would dissipate.
She was right. They did.

I never really got to express my thankfulness for that because he broke up with me (twice) via text message. I'd finally gotten a job that was somewhat in my field, and I was moving to a city about an hour and a half away. He started looking up jobs that he could do in the area right away, but I was more hesitant. We had argued a lot, or what I felt was a lot, being that it was my first real relationship and had no other gauge to juxtapose our relationship to. Before he uprooted his own life, I wanted to make sure that we were solid. I think he interpreted my reluctance as wanting to break up, and in order to feel in control of the situation, he broke up with me first.
The breakup lasted less than a week, when I finally texted him that it felt weird not to text him. I honestly don't remember what happened after that, other than being so relieved to have him lie next to me and hold me again.
Shortly thereafter, I had a particularly bad day at work. I don't remember what happened exactly, only that I felt awful and needed comfort. He said he was busy, at some concert or something with his friends, and that we would see each other soon.
I was livid, and I handled it badly.

Early on in the relationship, he bailed on our plans a lot to be with his friends until his dad piped up and told him that he wouldn't have a girlfriend anymore if he kept it up. It irritated me that it took his dad saying something about it for him to adjust accordingly, but I tried as best as I could to make allowances for our age difference--he was just a couple years younger in age years, but that made him even younger in maturity years.
I understand that unexpected things come up, and that he needed to help his friend through a particularly nasty breakup.
It happened a lot, though, and autistic people are very well-known for their inflexibility when it comes to changing plans.
It's something that I need to work on, and honestly, I'll probably always be working on it, because having a routine schedule helps me feel like I have things under control, which is a feeling that I don't often get to feel. When people break plans it upsets my routine, which is often very carefully planned out because I require a lot of down time because of how socially overloaded I get by everyday things--going to work, the grocery store, the gym, etc.
Even though I can be inflexible about seemingly trivial things, I will drop anything and everything if someone needs me. I put my academic life on hold for a friend in the throes of an eating disorder; I got my first D since fourth grade, and ended up having to take Incompletes for all my other classes because I put everything I had into helping my friend.
To me, that's what love is. Unwavering loyalty and a willingness (within reason, which is a line I struggle to delineate) to put your needs on hold for another person.
I'd had a terrible day, and I needed him with me. He didn't understand why it was such a big deal to me. I snapped, as autistics are wont to do when they get overloaded. I don't even remember what I said, but it was apparently bad enough to make him want to break up with me again .

I texted him later and tried to explain why I got so angry, but the damage was done.
We were done.
I all but begged him to see him in person, because even if we did decide to break up, I didn't want it to be over texting.
He said he didn't want to break up face to face, and that was that.
I finished out my two weeks at my job, then I was off to training for a few days before my big move.
I had already taken down some things of his in preparation for seeing him on weekends--socks, shirts, underoos--because he often forgot to pack them.

I never got closure, and it's bothered me ever since.
I was so torn about moving--uprooting yourself is never easy, but it's especially hard on those of us with limited social skills.
Not to mention that living on your own can be incredibly expensive, especially when your job doesn't pay much. I was afraid to leave, but I was afraid to stay, too. I really loved him, but it felt like I could never get through to him. At the beginning of our relationship he was so eager to learn about Asperger's, and at the time I thought it was because he was really vested in me, but I've often wondered if he was just vested in the idea of me. He said one of the things that really drew him to me (other than my bod, which was smokin' at the time) was that I didn't play mind games. I sent him endless and probably annoying Snapchats of my cats, because that's who I am, unapologetically--a person who is quirky, funny, and obsessed with cats and puns. I am who I am and I don't try to hide it.

In the end, though, it seems like he couldn't really handle me being autistic. It has its perks, to be sure--I'm loyal, honest, focused, intelligent, humorously self-deprecating, and, not to mention, a cat pun extraordinaire. I'm kind of awesome. But I definitely have my limitations, too. I can be inflexible, stubborn to a fault, oblivious, and I have very real sensory issues that impact my daily functioning. He was angry at me for showing interest in doing things that he enjoyed, like going to concerts. Even concerts with bands that I love can be draining to me, let alone bands that I don't know that involve driving for three or more hours (I also have pain issues that make long-distance driving very difficult for me) and being around screaming, sweaty twentysomethings. I couldn't go, but I bought him one of his favorite band's t-shirts that I had to special order from Australia (he was a big dude and they're a bit obscure). Instead of believing that my struggles were real, or reading any of the books I asked him to read that dealt specifically with almost all the things we fought over, he chose to hold that against me, and as part of the reason for breaking up with me.

The first month or so after I moved, he was all I thought about.
It drove me nuts, and nothing I did seemed to make it go away.
Before we actually dated, he had this habit of posting problematic, anti-feminist memes on Facebook because he knew he'd get a rise out of me and I'd respond. After we broke up, I had to unfriend him because I never knew if he was doing it deliberately to get a rise out of me or just because he thought it was funny, and I hated feeling like he was playing mind games with me.
I felt the only way to stop obsessing over everything he posted was to just remove him from social media altogether, but I did keep him on Snapchat, because that was my last connection with him.
I'd noticed that he'd use the 'My Story' function to read my snaps, so for a while, that made me feel not totally disconnected to him.
Out of the blue, he Snapchatted me a picture of his new Xbox.

We went back and forth for a while and then I just straight up asked him if he did it just to talk to me, and he said yes. He was having second thoughts, and he wanted to talk.
I told him that I would be in town that weekend, that I could meet late on Saturday night after family dinner.
He was all I thought about the whole rest of the week: what would I say? What would I do? Would I be proud and stand my ground, or just give in and tell him I still wanted to be with him?
I didn't want to seem overly eager, so I waited until later in the day to send my perfectly crafted, meticulously casual plans to meet up.
He responded: lol I didn't think you were serious.

That was a real blow.

I spent a while trying to figure out how to respond, and ended up just asking him when I have ever not been serious about something like that.
He never responded.
I wanted the earth to swallow me whole.

I only seen him once in passing after that, as he was driving past my house. I'm still not very sure what to make of that, but I did live near a business he liked to frequent, so I'm trying to not place so much meaning on it.
Even though it got easier as the months flew by, it has never stopped hurting.
Maybe it's a "first love" kind of deal, or "one that got away," or "person who helped me believe in love again" or "asshole who stomped on my heart and was weirdly manipulative about it" thing.
I try to remember that I felt the same way about never being able to recover from what my so-called "friend" did to me, and even though it is still one of the worst things that's happened to me, I ended up learning a lot about myself and the fact that I'm autistic. There's a pretty good chance that I still wouldn't know had it not been for that.
I think "positive thinking" is sometimes obnoxious and problematic, but I do believe that at the very least, you learn about yourself and how strong you are when you go through that serious shit, even if most days you feel like it's completely broken you.

I am in a seemingly endless spiral of sadness because of things beyond my control: the death of my best friendcat, my seemingly undiagnosable autoimmune problems, the financial ruin that accompanies moving to a new city when your wages are set at the poverty level and you're not allowed to get a second job, being disabled enough to not be able to find employment but not disabled enough to qualify for disability etc. etc.
There are precious few things in life you can control; that's a life lesson that keeps beating me over the head on a regular basis.
It took Stormy's death to realize all of the pain and weight that I've been carrying around since my breakup.
I think part of me always blamed myself, because that's almost reflexive when you're autistic and you don't really understand the world.
It hurts me in a way I can barely describe--to my core--that my ex has just moved on.
Part of it is because of the way he acted, and part of it is that I'm resentful that as my life seems to fall apart, his is falling into place.

I've always known that I am destined for greatness; what I have envisioned as greatness has certainly morphed and shifted over the years, but I believe with all my heart that I'm going to do something truly incredible someday.
To be honest, though, I think the little things are the most incredible.
It's all the women who have reached out to me through Facebook and told me that the things I share and write have impacted their lives.
It's every response to comments that I post on articles about autism from strangers thanking me for being me (and believe me, those are especially treasured by me because they're so few and far between).
It's being asked to write an article for a local disability advocacy network because of something I wrote.
It's being asked to write two other book reviews by an online disability community advocating for inclusion and representation in literature after writing the first because they were THAT blown away by my truths.
In all these seemingly small acts, I'm really impacting people and changing perceptions about what it means to be an autistic woman.
Change may start with one person, but it has a ripple effect, and I'm rippling into a lot of people's lives.
It's unstoppable.
I'm a big fucking deal.

[I don't know how to format a break here, so just imagine something artsy fartsy and cool like ~*~ instead of this]

I wrote some of this up yesterday and, after a technical snafu prevented me from posting it, I came back to it just to edit for clarity and spelling errors.
I've been writing for almost two hours (hence the longness!).
I cried three times.
Thanks for the weird life lessons, heart.

Here was my original ending (about 700 paragraphs ago):

It feels awful and I just want to sleep through the next four months of my life, but unfortunately, it doesn't really work that way.
I know that this too shall pass, but I have to wonder if the only way to heal a broken heart is to patch it up with a new love, and that just seems exhausting and problematic and annoying.
I really don't know much about love except for the fact that it hurts.
I'd like to think it's worth it, but as previously stated, I am trapped in a sadness spiral, and it feels like I'll never break free.

Here is my new ending:

I don't know whether or not I will ever be over my first love, but even though it ended painfully I'm glad it happened because it taught me so many things. I feel really inspired and fired up and unstoppable right now, but I might not tomorrow, and that's okay. It doesn't mean I'm not strong; sometimes the strongest people have NOPE days and instead of seeing that as a weakness, we should see it as a sign of strength because it takes bravery to admit you're scared shitless.
I do think I will find love one day, and that it will be real and powerful and exhilarating and terrifying. I think I use a lot of maybes when it comes to love because I'm afraid to hope for something, only to be disappointed.
Honestly, I'm like 85% convinced my cats are my real soulmates anyway.
This was really raw and cathartic for me, and I'm glad I finally got around to blogging again, because awesome shit always happens when I do.
My thoughts and words are powerful.
They are life-changing.
They are life-saving.
They are mine.

Tuesday, February 24, 2015

: That Time My Favorite Aspie Author Jenny McCarthy'd Me and Ruined Everything

Recently, I stumbled across a blog post by Rudy Simone, an esteemed author on the Autism Spectrum, entitled "Why I No Longer Identify Myself as an Aspie." Horrified, but intrigued, I set out to read it, my heart dropping in disappointment with each paragraph.

She reasons that because her symptoms have been "managed," and because she's eliminated gluten and nearly all preservatives from her diet that she's essentially cured herself:

"I tell them that I was on the [A]utism [S]pectrum but no longer feel I have enough traits to identify as such. It’s not that I’m embarrassed, I was a loud and proud [A]spie, but honestly, I truly don’t feel [A]utistic anymore, just strong, unique, awkward at times, a bit eccentric I guess, a little gifted and trying to make my way in the world like all my brothers and sisters, on and off the spectrum."

Now, far be it from me to criticize how folks want to self-identify, but so much of her reasoning is problematic. She essentially boils an incredibly complex neurobiological condition down to a "gut issue," and criticizes spectrum folk who don't follow her dietary example, quipping "You cannot heal the gut with Taco Bell, donuts and [R]amen noodles." She's not necessarily wrong about how our diet can exacerbate certain symptoms--the link between gastrointestinal problems and ASD is pretty well-established--but the blasé way in which she approaches the issue is extremely classist.

From her own research, she estimates that roughly 85% of the adult population of Aspies is underemployed, and wholesome, nutrient-dense foods are not cheap. If we don't have adequate support systems or financial means, most of us can't afford a "whole food" diet, and not all of us would choose it even if we had the means to. Time is a huge privilege as well--if you're working overtime or more than one job in order to make ends meet, chances are you don't have much time or energy to do extensive meal planning or preparing. What we put into our bodies is our choice alone, and it really takes a lot of nerve for someone who should be an ally to shame folks who don't make the same choices they do based on an extremely reductive "Autism is a gut issue" argument.

Unsurprisingly, her article got a lot of heat from her readership and fan base. She wrote a follow up to her original post, arguing that because she followed her own advice from the books she wrote, her traits were "minimized" to the point where she "can meet new people and spend days with them and they have no idea [she's] on the spectrum." I guess maybe she forgot that a major characteristic of women on the "high functioning" end of the Autism spectrum is that we are better able to blend into social situations--that we're social chameleons, as ASD expert Tony Attwood described us. There's a particularly strange moment where she lashes out at her critics by stating: "It just doesn’t make sense that you don’t want the information to work for ME. Or that you want it to work, but not so well that I don’t feel qualified to use the label anymore. We’re really splitting hairs now. Frankly it’s nobody’s business what I call myself."

Now, I didn't read any of the comments on her post, so other than her general descriptions of the responses, I don't know exactly what folks' reactions were. I can't speak for anyone else, but my own reaction really didn't have anything to do with her information or tips "working" for me--it's the idea that she thinks Autism can be cured (Jenny McCarthy much?), that it should be cured, or that curbing or "fixing" some of our more obvious traits is a desirable thing. I'm not necessarily saying that Aspies shouldn't challenge themselves to grow and change, but I think it's extremely crucial to examine why we're changing or modifying our behaviors. Are we doing it for ourselves, or is it for someone else--our guardians, our partners, our families, our friends--or is it a survival tactic in order to function in a neurotypical world? I think we Aspies see so much of this "lessening AS symptoms as desirable" trope so much in our culture--on television (the character arc of Temperance Brennan on Bones, the relationship dynamics between Sheldon and all the other cast members of The Big Bang Theory), in movies (What's Eating Gilbert Grape, Forrest Gump), in fiction and nonfiction written by neurotypicals, as well as groups and organizations that purport to speak for us--that it becomes incredibly hard to swallow from someone who is one of us.

No matter how much you grow or change, no matter your diet, no matter what texturelicious items you pack into your sensory management bag, it doesn't change the reality of your brain chemistry and synapses. Maybe the delineations between NT and AS aren't so clear cut (and so much of how we qualify and quantify AS behaviors is arbitrary anyway), but I think it's extremely disingenuous, almost dangerously so, for someone to say that they've cured themselves of their Autism. Even if it is a personal decision to self-identify as you choose, it has real consequences socially and politically, particularly if you're someone of note within the community. Her books saved me in a lot of ways, particularly Aspergirls--she wrote with wisdom, experience and compassion, and helped me to voice things that I had previously be unable to communicate in my relationships. It's difficult for me to not feel betrayed by her "cure"; I don't wish to be overdramatic, but I am really struggling to retain respect for someone who has essentially turned her back on the AS community. Saying that your Asperger's is "cured" isn't growth--it's assimilating yourself into inspirational ableist tropes about "overcoming" disability, and it’s a blight on all your work within the field.

It's bullshit. And the Autism Spectrum community really doesn't need any more of that in their lives.

Tuesday, February 3, 2015

Life is a Battlefield

So, last Thursday seen me cruising (read: terrified and white-knuckled) up I-79 for an appointment that had been my lifeline for the previous few weeks. My AS therapist had helped me to set up an appointment with a Nurse Practitioner (this is basically a follow-up from my last blerg post), and I braved 80 treacherous miles of unplowed highway because I was scared of what I might do if I didn't get in to this appointment.

Turns out, major waste of time, gas, and certainly not worth the risk of my life and limb and Prudence (my car).
Upon arrival, I had to fill out the usual million pages of HIPAA forms, as well as patient history.
I always chuckle to myself when it asks for the mental history of my family, and I usually just put "everyone has everything," as it saves much of my time.

So we're into the nitty gritty of the visit, and I notice how she keeps calling my decision to not take psychotropic medication into question.
"Now, tell me specifically why you won't take any medication?"
[All of my reasons, including one of the most horrifying experiences of my life where I forgot where I was and who I was while on a fairly low dose of a psychotropic medication, and also the fact that I've been run through the gambit of SSRIs, SNRIs, etc., even diabetic neuropathy, and all it does is wreak havoc on my brain.]
"Okay, but I still don't understand why exactly you're not taking these."
[Also mention that I've done extensive research into the side effects, as well as participate in chronic pain forums where people tell me all of their horror stories about year-long withdrawals from Cymbalta and similar medications.]
"But WHY."

So after that long, tall glass of Waste of Time, I went to my mom's house in Erie to decompress.
In going to that appointment, I had made the decision to pay my rent late.
Because see, when you live in poverty, you have to make those choices--do I see my doctor or pay my rent; do I buy food for myself or food for the cat (cat, obvi.); do I buy gas or do I pay for my medications.
I don't even have it as bad as some other people, and it's a fucking nightmare.

Luckily, I think the Nurse Practitioner felt sorry enough for me that she didn't charge me a copay at the time (though I am holding my breath for a bill in the mail), so I was able to pay my rent only ten dollars short, and did not incur a fee.
Ever wonder why renters will charge you $25 a day for being a day late, but they don't actually cash the check until the 5th or 6th?
I digress.

So as I was explaining all of this to my mom, she starting telling me that I don't appreciate what I have, and how I'm always negative.
After everything that had happened in the past three weeks, the constant laying on the floor in a heap sobbing, bursting into tears at work because of the pain, and the general feeling of no longer wanting to exist, I snapped.
Like, super snapped.
I've never sworn at my mother--I find it extremely disrespectful and distasteful, even in a joking way.
But I screamed FUCK YOU at her, twice, before I even realized what I said.
I don't even remember what she said afterward, but she went upstairs and I drove back to Sharon.
Basically sobbing the whole way and wishing I was dead.

Then I got pissed.
Generally, I'm usually pretty pissed because I exist in the world and it is so hurtful and terrible.
I react viscerally to things, so I have to be really careful about what I let in, because I feel so much and so deeply, even if I can't always verbalize it.
It was kind of a good pissed, though.
The kind of pissed that gives you the fire to be all, "Fuck this situation, this bullshit ain't gonna fly anymore."
The kind of pissed that's like "Fuck you world, you are trying to swallow me whole, but you bitches are gonna CHOKE on me."

So now I actually feel pretty good.
As good as a person who constantly feels like they've been hit by a bus and set on fire could be.

My mom messaged me this morning saying that she loved me and that we needed to get past this, so I figured I'd share my response here.
I was a bit weepy towards the beginning, but by the end I was all I CAN DO ANYTHING (!).

So here it is:

I love you too, and I'm sorry I swore at you, but I'm not sorry that I had an outburst. Your perception of me as "being negative" when I discuss my health issues is like being kicked when I'm already down; you're really not involved in my health care management (beyond just being able and willing to keep me on your insurance, which I of course appreciate) so you really do not understand the level of stress and discrimination I come up against when I try and advocate for myself.

Being kicked off a treatment program twice for NOT ACTUALLY ABUSING A DRUG is just the tip of the iceberg; I'm forever struggling with communicating my level of pain and distress to doctors, who by and large view me as a malingerer and a potential legal issue. By virtue of just BEING WHO I AM, I am treated like a criminal. You may have chronic health issues, but you clearly don't understand how political my condition is. You might be able to say things like, at least you HAVE insurance--but you have no idea how precarious that really is. I have to fight tooth and nail every goddamn day for just really basic shit, and it's exhausting. I am ALWAYS tired. I'm twenty five years old, and I am already exhausted from living because I have two invisible conditions and very little resources available to me. And I realize there are people who have less than me, and my heart aches for them. But that doesn't mean my problems are lesser. By that logic, no one should be allowed to be happy, because there might be people in the world who are happier. It's ridiculous.

An even bigger issue is that I *know* what I need to manage my health, and I can't have access to it. And I'm not even talking about Percocet, although that's proven to be effective for me. I'm talking about swimming, yoga, exercise and massage therapy, and better nutrition. These are the things I know I need, but people keep trying to push goddamn poison on me (and yes, medicine works for a lot of folks, and that's great. It DOESN'T work for me.) Unless you have ever experienced forgetting who you are and where you are, which happened to me while I was taking Abilify, which is in the same class as some of the bullshit they want me to ingest, you will NEVER understand how HORRIFYING it is to be in the middle of nowhere and not knowing your name or how you got there. That was one of the scariest moments of my life, and I would rather feel knives all over my body than ever experience that again. You think you hate phone calls? Try having Autism. I know the world doesn't give a shit if I have Autism, and I have to do it even if it gives me knots in my stomach, because I have to advocate for myself because no one else can. I have called SEVEN different places to see if they had a pool--schools, YMCAs, etc. There are none around here, and the one that I COULD go to I can't afford, and they won't extend me the college rate, because believe me, I tried. I have had to put off medical appointments because I cannot afford them, because I have to make a choice between having a place to live and being able to see the doctor, even with you helping me out financially. Having fibro and Autism and being low income is like climbing up an active volcano in swim fins. No matter how hard I try, I keep getting beaten down, and the people I'm supposed to be able to trust don't take my concerns seriously, because they have the arrogance to think that they understand my brain and my body better than I do. That is inherently a political issue. My life is literally a battleground. I don't understand how you don't see that.

I've basically given up on doctors. Insofar as other medical issues go, I'll get treated by them, and I will have to continue with Tramadol, because it's my only lifeline. But it wreaks havoc on my system. If it weren't for my desire to make the world better for other people like me, I probably would have checked out long ago. I keep fighting because I have to believe that someday my struggles will help someone else, in the same way that reading memoirs of people with AS or depression have been my lifeline. I know I'm going to be okay one day, that I'll be able to manage well enough to support myself, and maybe some little ones, I don't know for sure.

I also fight to spite these motherfuckers who run the country who exploit the most vulnerable in our population. Maybe I come off as negative to you because you don't understand the fight I'm in, or you don't care to see it because you have the luxury of being complacent, I don't know. I could see you being jaded about the system--it seems like all the bullshit will never change. But character and victory are born of struggle--if we didn't struggle for the right to vote because it was "just the way it is," if we didn't struggle for the right to our bodies, the right to have access to reproductive care, for equality in the workplace, for representation in popular culture and literature, we wouldn't be where we are now. Even if it's shitty, it's better than it was, and we can be part of that change, even if it's painstakingly slow. Our system is rigged to make people fail and it's totally unfair, and if these motherfuckers think I'm going to take it sitting down, they've got another thing coming--I'll make the fuckers choke on me.