Tuesday, October 25, 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.

/soapbox

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

Processing

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.

Anyway.
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.

Monday, January 12, 2015

A Burning Thing

Two years ago, I got my first tattoo: a ring of fire with the lyric Love is a burning thing. I got it to honor the relationship I had with my father; a symbol of the love he had for me. When I was little, he would put on the Johnny Cash record, and I would dance in circles in the living room singing The reen of fiyerr, the reen of fiyerr.
I have a hard time remembering the good things about my father, and I thought this was a good way of solidifying our bond. Time and again my aunts, cousins and grandparents would tell me how much he loved me, and I earnestly, desperately want to believe it, but I just don’t remember.

And it hurts like hell.

A couple weeks ago, I sent for a copy of my father’s military service record (and as it turns out, he very likely got booted out early for inappropriate conduct). In order to obtain it, I had to send a copy of his death certificate. It was almost surreal to see all the minute details—the approximate time he pulled the trigger, the exact time he was pronounced dead, the .44 magnum he used that was later destroyed. But it wasn’t the details in black and white that affected me most. It was the memories those details triggered, flooding my consciousness with the fear and trauma I experienced as a child.

It was everyone gathered in the downstairs apartment that night.
It was my excitement to sit on my aunt’s lap, my lack of understanding.
It was my mom forbidding me from entering their old bedroom, the room in which his life was ended.
It was being dismissed from class to attend the funeral over the loudspeaker in my elementary school.
It was the moment it finally hit me, the moment I crawled under the dining room table and looked up to the picture of my father, aunts, uncles and grandparents, tears streaming down my face, silently pleading for an answer, a reason—

Daddy, why did you leave me?

I can’t say that I knew exactly what had happened—my grandmother told me that it was an accident, that he was cleaning his gun and it went off—but for all the obvious that I miss when it comes to social interaction and relationships, I have always been deeply intuitive when it comes to pain, and I think I knew on some level that the lie was meant to protect me.
In a way, I think it was also to protect my mother and the rest of my family—now that I’m older, I can’t even imagine how gut-wrenching it must have been for them to even tell me that he had passed, let alone the fact that it was self-inflicted.
It takes an unimaginable amount of strength, a kind of strength you don’t even know you possess until you’re forced into that situation.

The kind of strength that my mother has exhibited every day of my life.

It took me a really long time to realize that my mother and I are survivors of domestic violence. For as much as I learned about gender-based violence in college, I never connected the dots. Maybe it was self-preservation, or maybe I just couldn’t handle the fact that someone who genuinely loved my mother and me could inflict so much pain and emotional damage; a kind of cognitive dissonance that has plagued me my entire life, and that I am just now, at 25, ready to think and write about.

This post was originally meant to be about my struggle to understand the relationship I have with my father, particularly because I permanently memorialized it on my body. What I didn’t understand at the time I got the tattoo, however, is that my relationship with my father is intrinsically tied to my relationship with my mother, as well as my father’s side of the family. My father was the fourth of six children, so my aunts and uncles have a very different understanding of him—they knew him before the alcoholism, before the abuse, before the neglect. They aren’t able to see the side of him that my mother and I saw, the reality that she and I lived every day—the drinking, the meanness, how he would spend all our money on booze, how he would try to pick me up drunk from my nanny’s house—I couldn’t have been more than four, but I distinctly remember my nanny taking me to the parking lot of the grocery store near her house so that he couldn’t drive drunk with me in the truck. I remember the hole he punched in the wall, and the masterpiece of red construction paper with blue, yellow, pink, white and purple pencil squiggles that haphazardly covered it.

There’s also plenty I don’t remember.

I don’t remember the time I called for “Mommy Stanko” at work, in tears because of a severe ear infection, when my father refused to take me to the emergency room.
I don’t remember the time my mother tried picking me up from my father, nor his refusal to answer the door despite my frightened cries for my mommy.
I don’t remember him kicking us out of our apartment; I don’t remember our brief stay at a domestic violence shelter where the Annie doll my grandmother sewed for me was stolen; I don’t remember his threats on my mother’s life; I don’t remember the terror he inflicted upon my mother, and the fear she must have felt for herself and for me.

For a while, it was easy for me to demonize him because I didn't understand what depression was really like.
I didn't understand how addiction, coupled with crippling depression, could distort someone's personality and turn them into someone they really weren't.
I didn't fully understand my mother's angry outbursts over seemingly innocuous incidents, because I didn't understand the weight of the responsibility that goes along with raising a small, traumatized human when you are wrestling your own demons.

Really, I may never fully understand.
Nothing about love and violence makes sense.

What I do know is that I have more compassion for my father and my mother, and the struggles that they faced.
I have a better understanding of the complexities of love, and how you can still love people that hurt you and cause you pain.
I know that love isn't the be-all, end-all, and that it really isn't all you need.
You need compatibility, shared dreams and goals, a respect for one another's individuality.

You need a best friend.

I've learned much and more from my parents, the good and the bad.
I've learned to be pragmatic in my views on love and partnership.
I've learned that love truly is a burning thing, and that if you're not careful, it can consume you.

Most importantly, I've learned to have a deep respect for that fire, knowing full well that it will burn me if I'm not careful, but that it will also keep me warm, that it will give me a will to fight and a passion for being alive.

Friday, December 19, 2014

Opiate

So out of sheer desperation, I emailed my non-MD/DO ASD therapist today and requested a doctor's reference. Actually, I'm not sure that I even know what I'm requesting, only that I am all tapped out of resources, as well as tapped out physically and emotionally. The request kind of spiraled into a blog-esque format, so I figured I'd share, because who doesn't love the struggle of trying to find adequate medical care?

Here it is, in all its unadulterated glory:

Hi. So, because of all the stress I'm under from my job and because of the fact that I have a billion dollars of student debt and only make $31 a day (which is taxed, by the way, which is ludicrous), I basically feel like I'm dying all the time--I constantly feel ill, and everything hurts and everything is terrible and I don't understand how I can be in this much pain and not just die already. Obviously, I do not wish to die; I am too funny to die, and my cats and dog would be super mad at me for dying, and also there are way too many TV shows and movie sequels that I need to see.

Simply put, I cannot live like this much longer, and it is quite frankly astounding that I have even been doing it for this long.

So anyway, I suspect that my current PCP got her medical degree from a box of Cracker Jacks. She is not empathetic, she is condescending, and her office is run by a bunch of pilgrims who do not accept debit cards (not even the flex spending cards, which is what I depend on to be able to see the doctor).

Clearly, I need a new PCP, but it's kind of difficult to do that when you don't have any money. I'm going to ask people in my office for advice on PCPs who are not terrible, but due to the nature of my conditions, it's going to be hard to find someone who does not actively suck as a healthcare professional.

In the meantime, I've scheduled an appointment with a specialist (Rheumatologist) to see if I can get better healthcare--or even just run-of-the-mill, not terrible healthcare.

Last night, I went through the beginning stages of withdrawal from my Tramadol (I try to not take it in the evenings, as it keeps me up at night, and I have a difficult enough time regulating my sleeping patterns--normally I'll just do stretches and take a hot bath or shower to relieve pain at night). Unwittingly, I had not taken any in about 18 hours.

I have never, never, never had this problem when I was taking Percocet. I have never felt sick to my stomach on Percocet, I have never felt chemically dependent upon Percocet, and certainly never went though heroin-like withdrawal on Percocet.

Unfortunately, obtaining a prescription for the medicine that has proven to be effective for my pain management has kinda been like trying to run through lava wearing swimming fins. Ineffective, exhausting, and painful.

I've twice been kicked off of (and been discharged as a patient) pain management plans for reasons related to Autism and, quite frankly, for my inability to understand and play the system.

The first instance was with my PCP of seventeen years. I called in my prescription, and upon arrival, was asked to give a urine sample. The sample itself was not the problem; it was the sign on the door indicating that the practice would no longer accept patients with pain conditions, sleep disorders/disturbances, or attention problems--all of which I had been treated for at one point or another. The anxiety I experienced (compounded by the already terrible day I had) stemmed from the fact that UPMC had taken over their practice, and my insurance through my mother was Vincent's, which meant that unless I wanted to pay double on bills I already couldn't afford, I had to find a new PCP--and if this office could discriminate against people with certain conditions or disabilities, then anyone could, and I'd never be able to get the treatment I needed. All this was swirling around in an already ruffled Autistic brain when, to add insult to injury, I was made to wait for over half an hour to piss in a cup. Fearing that I would have a very public and very embarrassing meltdown, I removed myself from the situation to have a proper meltdown in the comfort of my own home, resolving to come back the next day. As it turns out, it's illegal to do that in Doctorland--they discharged me as a patient because I "could have taken something to cleanse my urine."

First of all, I'm pretty sure there's nothing that can clear urine in 24 hours. Second, I am not sneaky. I have Autism, and I was in an unsafe situation. I attempted to explain the situation, but to no avail. I was discharged after being his patient for seventeen years.

The second time, you're aware of--as you are also aware that the staff are a bunch of goons who can't keep their dates or facts straight. I was prescribed Perc and Tramadol, and I was having a lot of success weaning off of prescription use at all because I was swimming and going to the gym because I had pain medication to fall back on (basically, my body is arbitrary, and there are days where exercise, even yoga, will cause me intense amounts of pain for no reason). I DID AS I WAS DIRECTED BY MY DOCTOR. PERC FOR VERY PAINFUL DAYS, TRAMADOL FOR LESS PAINFUL DAYS. Then the nurse negates that, says I'm supposed to take it three times every day regardless (WHICH IS HOW AND WHY PEOPLE GET ADDICTED).

**[EDIT]: So, you are not my therapist, and you don't know what happened. Basically, I had to take another urine test, which I took after nearly a two week period of only taking Tramadol (I was swimming every day and really starting to focus on non-narcotic healing methods). The only reason I took it then (and unwittingly so) was because I had forgotten about the lab work in the first place, because I have really terrible executive functioning. Ironically, it was me trying to NOT get kicked off that got me kicked off. After the results came in and I was notified that I was no longer going to be receiving narcotic treatment, I called twice on my own behalf, and my therapist joined me for a third conference call, all of which was through an intermediary--my actual doctor didn't speak with me at all. I scheduled an appointment to see him, and was made to wait an entire HOUR while I rocked myself back and forth, desperately trying to keep my cool. After the one hour mark (and two hours' worth of work time wasted, I might add), I walked out of the door and the perky nurse's aid piped up with, "He should be right in, sweetie!" The very same sentence I'd heard an hour earlier! Later that week I requested my medical records, and discharged myself from the practice. He is actually a really good doctor, so not only did it hurt my feelings when this happened, but I lost a competent medical professional who actually listened to my concerns and input about my health (up to that point, at least). He was also an Allegheny grad.

So because of miscommunication based on Autism and medical professionals' incompetence, I have been kicked off the one thing that has helped me to mange my pain.

I'm sure I don't have to tell you how supremely unfair, problematic and ableist that is.

I'm not stupid. I understand the risk of long-term opiate use. I understand that as a daughter of an alcoholic, I have a genetic predisposition to addiction. I understand tolerance, and I understand the reticence of the medical community to prescribe it to someone with my diagnosis, particularly because of my age.

Opiates should not be a "go to" drug. All other avenues should be exhausted--anti inflammatories, muscle relaxers (both of which I take, both of which are ineffective), even SSRIs and anti depressants, and recently they've had successes with diabetic neuropathy (gabapentin, also ineffective).

However, with my ASD diagnosis, it should be taken into consideration that my brain is fundamentally different from an NT, and that I've already been run through the gambit of all these mood stabilizers and it really wrecks my brain. A doctor's opinion should, of course, be respected, but in all fairness, I LIVE in this body, and I should be allowed, within reason, to make decisions regarding what chemicals be put into it.

My ASD actually works against me in that respect--always noted in my files is my "flat affect" (seriously, all the time), so when I say I'm at a pain level of 8 or 9, I don't LOOK like it, so they assume I'm lying.

I have been living in pain ever since I can remember. Having shooting pains up and down my legs when I sit too long in one position is all I've ever known. Can you imagine how horrible it would be to be around someone who is constantly complaining about every ache and pain? I don't have to imagine--I used to be that person. I was either ignored or outright dismissed, because what twelve year old has the same kind of pain that an 80-year-old arthritic does? I have come to learn that it doesn't matter how much pain I'm in, it is never taken seriously because it happens in my neurotransmitters, in the very fiber(s) of my being. For all I know, this is how I will live my life until I die. My brain is not only fundamentally different from most others, it has also been heavily traumatized, particularly in my early childhood. I probably learned fear before most kids learned how to walk.

Basically, I never had a chance.

The best I can hope for is management, and I have made peace with that. I will always have bad days, but those serve to remind me how incredibly special the days when I'm pain free are. I will have to remain active with yoga, swimming, and low-impact exercises, as well as maintain a food lifestyle that nourishes my body and helps to regulate it.

What I need is not opiates. What I need are resources--resources that at my current income level, I do not have access to: specialized care in pain management homeopathic remedies, massage, acupuncture, chiropractic care, yoga/swimming/exercise facilities, etc.

I learned a long time ago that doctors don't know it all; in fact, it was the most disillusioning thing about being an adult. I have had to take an active role in my self care, but it's to the point where I'm out of the energy and resources necessary to sustain my health, and I need help.

I'm sorry that this was a million years long, but I really don't know where else to turn. I strongly believe that there is a reason behind my struggles, and that I will someday use these experiences to help someone else, or even to be a public advocate for the health and rights of chronic pain sufferers. However, if I'm constantly wishing I would get run over by a bus for some decent pain management, I may not make it long enough to fulfill my dreams of authorship and advocacy.

I need help, I need help, I need help

**[FURTHER EDIT]: So she wrote back, and was like, "Not sure how to respond to this..."

To which I was all, "Fair point."

So I more clearly delineated what I thought I needed from her, which isn't so much a reference to a doctor, so much as a note to a potential dispenser of much-needed medication. I'll share that here, and end on that note, because even though about half my psychic energy is expended on wishing to be hit by public transportation, I think it's important to be cautiously optimistic, and definitely irreverent, because if I can't find hope or humor in any of my statistically improbable situations, then why am I even here?



Dear Medical "Professional":

Sam is not lying, she has Autism and that's just what her face looks like, quit being an ableist douche wheel and give her pain meds so that she doesn't actively wish that she would get hit by a bus.

Love,

Her Therapist