: 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.

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.

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.

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

Because I'm #allaboutdatmedicalindustrialcomplex

For once in my life, it would be wonderful if I didn't leave a doctor's office in tears.

Earlier this week, I went to see my new general practitioner about a particularly nasty sore throat.
I was worried it was strep not only because of the unbearably severe throat pain, but because I had both sweats and chills.
(As it turns out, I apparently just get night sweats.)
While I may not be able to decipher social cues as easily as most neurotypicals, after years and years of practice, I can tell when a medical professional is making assumptions about me--that I'm melodramatic, that I'm exaggerating my symptoms, that I'm too young to even be experiencing such symptoms.

Basically, they think I'm a liar and an addict because I request treatments that have been beneficial for me in the past.

When I told this particular doctor that being sick amplifies the pain I feel on a normal day, I asked her what I should do--and asked if I could take more of the Tramadol I'm prescribed (Tramadol is a opiod--a non-narcotic pain reliever that works on the same receptors that a opiate would, but is less addictive and, you guessed it, less effective). She said no, and to take the Naproxen I'm also prescribed (basically just a higher dose of Advil) along with a muscle relaxer at night.

Which I've been doing for three months, and it isn't doing jack shit to relieve the normal pain I experience, let alone the amplified pain from a cold.

So you know how when you have a fever, your bones sometimes feel like glass?

Try living that every single fucking day of your life, and having some asshat who got their MD from a box of Cracker Jacks that there is "nothing that [they] can do" about it (literally, LITERALLY, have been told this on SEVERAL occasions).

Part of the problem is, other than the entire medical industrial complex in general, my Autism.

Really, it's not MY problem--it's usually the doctor's. You see, because I have been dealing with severe pain for every day of my life pretty much ever since I can remember, I don't always look like I'm in pain. So when I tell a medical professional that my pain level is an 8, but my affect is completely flat (as has been noted several times in my medical charts), they don't believe me. They think they understand what pain looks like.

They know nothing.

It is my firm belief that no doctor should be allowed to treat chronic pain conditions unless they've experienced it themselves. I'm not suggesting that only chronic pain suffering doctors be allowed to practice--that would not be practical--but they had success with simulating labor pains (an experiment was done where husbands who doubted the degree of their wives' labor pains were hooked up to electrodes that simulated the pains of labor; needless to say, results were highly amusing), and there isn't any reason why Fibro pains couldn't also be simulated.

There have been so, so many times where I've wanted to ask a doctor who clearly doubts me how well they'd be able to perform their jobs or go about their lives with a pain level of at least 8 a day. (Hint: probably not very well.)

I think about all these zingers I could use on these doctors, but when I'm in that moment, I'm so focused on trying not to completely melt down in a crowded doctor's office that I can do very little but blink away the tears brimming on my eyelids.

I want to know when this will all end.
When it will finally come to the point where I'm not spending money I don't have on shitty people who generally do more harm to me than good.

This particular woman had the nerve to dismissively state, "I'm NOT giving you a narcotic. They don't work for fibromyalgia."

You know what, you ableist shitstain?
What I need is not a narcotic.
What I need is a change in circumstance.
What I need is:

* Time. Time to myself, time to decompress, time to rest and care for my body. In this culture, time is a luxury.
* Money. Money to support myself, to provide myself with nutrient dense foods, to be in control of my environment. In this culture, money is monopolized.
* Healthcare. Specialized care tailored to my unique needs, including but not limited to holistic care, massage, and acupuncture. In this culture, healthcare is a privilege.
* Revolution. Nearly all of our systems are broken: Justice, healthcare, economic, you name it. Most of the time, I am too tired for revolution. I am too sad, too heartbroken, too overwhelmed. Even if I am able to somehow attain all the aforementioned privileges, it will not be sufficient. We need to do better than we are doing now.

These are the things I need in order to be well, and all of them are beyond my grasp. Maybe not forever, but for now.
And until I have these things, I will continue to be in misery daily.
So get off your high fucking horse about the use of narcotics in pain relief*, and allow me to muddle through my existence with some dignity.

Viva la revoluction.

* I do want to make a point to say that I understand the potential dangers of narcotic use, particularly when used for chronic conditions. I believe other alternatives should be tried before they are used, and that their use should be monitored to ensure the health of the patient. I have been run through the gambit of SSRIs and other mood altering drugs, and it absolutely wreaked havoc on my Autistic brain. So many doctors are hesitant to prescribe opiates for fear of legal repercussions (bogus lawsuits involving folk who are prescribed opiates), and the drugs themselves are so heavily policed that you must pick the prescription up in person from the doctor's office (which can be hugely inconvenient for chronic pain sufferers who have mobility issues). But if a prescription for opiates is five dollars a month versus the costs of massage, yoga, or other homeopathic remedies, what choice does a low-income person have?

yeah so I might write a book (trigger warning)

So, this is a super rough draft of what is probably an introductory type chapter. A good friend recommended that I first write for myself, then decide later if I want to publish. There are a couple fairly recent books that deal with safety for Autistic women, but they're mostly guidebooks--this would be memoir.

HOKAY:

It has been my dream, ever since I can remember, to someday write a book. Growing up, books were my world. I really didn’t have friends, and I never quite fit in. Fantasy novels provided me an escape from my lonely reality, a sanctuary from a world I could never even begin to understand.
In my teen and early twenties, memoirs about depression very literally became my lifeline—the works of Elizabeth Wurtzel and Sylvia Path took root in me, validating my struggle, but not glamourizing it.
After my diagnosis, the works of Rudy Simone, Liane Holliday-Wiley and Debi Brown, provided for me a much needed framework to understand myself and my experience of the world, through the lens of Autism. I wouldn’t say it’s necessarily uncommon for a high functioning Aspie to be a good writer, but we certainly aren’t a majority. Writing is my gift, and I feel a strong calling to use it for the benefit of my people.
I won’t necessarily claim to speak for them—everyone experiences the world a little differently, Aspie or not—but high functioning females tend to share very similar profiles, and I believe we are particularly vulnerable to people who don’t have our best interests at heart.
For the longest time, I struggled to stick to a particular topic or memory to write about—my diagnosis, my childhood, or my journey post-diagnosis. These are all valid, book-length topics to write about, but they all stem from a singular incident, one that has haunted me since it came to pass. I avoided it for so long because it’s still so raw, so painful. It’s the reason I was diagnosed as Autistic, and it’s the reason why I have had to guard my heart and body so closely, for fear of violation. But the time has come, I think, for me to write about one of the worst things that ever happened to me, and one of the worst things I’ve ever done.

Just thinking about it is nauseating, and it’s triggering all sorts of traumatic feelings and memories.

Being this vulnerable is certainly a risk as an author—I haven’t decided if I want to publish it, or if I want to “out” myself as a victim of sexual manipulation in such a public way—but if I do, I know the audience will not be limited to Aspies or those who love and know Aspies. I know there is a chance my perpetrator will read it, or at the very least know of its existence, and the potential backlash I may experience is almost cause enough to do away with the project altogether. This backlash is not just limited to my own offender—I’m sure the trolls will line right up to slut shame me, to tell me I “asked for it,” that I’m using Autism as “an excuse,” that I’m to blame because I didn’t shout NO!, that I’m a terrible human being for dragging my abuser’s name through the mud (though I will be changing names to protect identities), that I “should have known better” and that I “need to take responsibility for my own actions.”

Obviously, this is not the demographic I am writing for—I’m writing primarily for other Aspergirls, so that they might avoid the mistakes that I made, or so that they might know that they are not alone in experiencing sexual manipulation—especially if, like me, they are uncomfortable with labeling their experience as “rape.” I’m also writing for my own healing; I’ve buried these thoughts and emotions for so long, to the detriment of my emotional and physical health, and I owe it to myself to get well again.

Deep breath.

It happened gradually, then suddenly. My initiation into sex was, in a lot of ways, incredibly unremarkable, given that in our culture, coercion and manipulation are heartbreakingly common sexual experiences. It happened with someone I implicitly trusted—someone I never dreamed would violate my trust in such a way. It was the summer after I graduated from college—a summer of uncertainty, confusion and fervor. I had come dangerously close to not graduating, and had no job, no money, and no prospects.
For the first time in my life, I was without structure; where my path had once been clear (get good grades in high school, go to college, get a good job), it was now rife with uncertainty and insurmountable debt. My friends were getting jobs, apartments, engaged, even having babies; I was staying up until 4 AM eating Hot Pockets in bed, watching 90s X Men cartoon reruns, pantsless. I was lonely and overwhelmed, and desperately craved connection and distraction.

Enter Cameron.

Cameron and I had been acquaintances for a few years—he was a friend of a friend who eventually dated said friend. Prior to our “relationship” (I use the term loosely, but there’s really no single word to describe what happened between us), I was convinced I was incapable of sexual feelings. Unlike most of the other girls my age, I had never dated a boy—never kissed a boy, been alone with a boy, or had even the slightest interest in pursuing a relationship of any kind with one. I knew on some level that it wasn’t “normal” for me to be this way—I had even considered the possibility that I might be gay, except for the fact that I really did not feel attraction to other people in the same way that everyone else seemed to.
If I’d had the knowledge of sexual identities that I do now, I would probably have identified as asexual. I did have crushes, but they weren’t really sexual in nature—it was more of a desire for emotional closeness, and the guys I liked tended to be a few years older than me, so they were much more mature than my male peers. With every single one of my crushes, I felt safe—a feeling I was altogether unaccustomed to, particularly around males.

Cameron was one of my crushes.

When he and I first met, I didn’t think much of him. He was hyper and high-strung, he dressed in high-end clothing, and he hung out with people who would never give me the time of day. For whatever reason, he persistently attempted to interact with me—it was his interest in me, more than anything, which sparked my attention. I was too shy to do anything about it—and really, I was not even remotely ready for a physical or emotional relationship. After a few months, the crush passed, and we didn’t interact much during my college career, save the occasional holiday get-together or Facebook post. Being alone didn’t bother me much—I’d seen so many people I knew involved in toxic relationships, defining themselves by their significant other, staying with a partner they hated just because they were afraid of being alone. I promised myself that that would never be me.

The Struggle is Real

So, poverty is the worst.
The whole idea behind the living stipend and the disallowance of a second income is so that VISTA members “understand what it’s really like” to live in poverty. But the thing is, there are different levels of poverty—or I guess, more accurately, there are different levels or factors that go into one’s class status.
First, there’s the obvious—capital. Of which I am severely lacking.
Then there is your social network—so much of the job market is focused on your network, and 70% of recent college grads get their first job through somebody they know. When you have a social deficiency, such as Asperger’s, this pretty severely affects your job prospects.
Finally, there’s education—technically, I’m privileged in this area, because not only am I intelligent, I also have a degree from a prestigious college (even if it hasn’t gotten me anywhere). But along those lines, I also have a staggering amount of student debt, to the tune of $70,000. I’m having to pretty seriously consider declaring Chapter 7 bankruptcy.

The system is rigged and it’s totally unfair. The wealthy stay wealthy by circulating themselves and their progeny through expensive, exclusive private academies, and they’re always well-connected. If someone from the lower echelons, such as myself, tries to rise above their lower class background, they are inundated with debt, and that’s even WITH extensive financial aid. I come from an armed services, blue-collar, lower middle/working class family, and I grew up in a single-parent, female-headed household. Because I lacked the capital to move to a different city directly after graduation, and because I was not able to intern for free or for peanuts, I had no relevant work experience in an economically depressed town that’s rapidly becoming known as “Little Detroit.” I was living in relative poverty because of my loan payments, despite the fact that I lived at home and did not have to pay for housing. I also was not eligible for any kind of assistance, so I racked up credit card debt by buying luxuries such as groceries and health care services. I worked 50+ hours a week, sometimes seven days a week, at a high-stress, low-paying job that took gross advantage of my naiveté. I saw VISTA as my out from an oppressive, unhealthy environment. Had I been forced to say, I can say with a degree of certainty that I would probably have attempted suicide, or at the very least, seriously contemplated it. I didn’t need therapy—I needed out of an incredibly detrimental situation.

Unsurprisingly, VISTA was and is not a cure-all. In some ways—really, in a lot of ways—I’m actually worse off. I make $800 a month, and have $75,000 in debt. My rent is $550, my car is $150, and my phone is $40. These expenses are my first priority, which leaves me a paltry $60 for every other expense. I get $200 in food stamps a month, which means I eat a lot of cereal and over processed foods. I also have past medical bills, current and future medical bills (being sick and poor is the worst), two cats, and the absolute worst luck with automobiles.

But we wouldn’t want me to have a second income—because however will I understand what it is like to struggle?