Thursday, August 3, 2017

Why I Fight

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

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

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

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

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

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

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

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

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

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

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

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

Feel completely broken by life because where the fuck do you work as an autistic if an autism charity fires you?
SURPRISE, MOAR DISEASES 4 U!

Desperately need gym access with a pool because that's the only thing that has truly managed your knee pain?
NO MONEY EVER, EXPENSIVE FEES ALWAYS! AND YES THAT FUCKING INCLUDES THE YMCA, I AM NOT NEW AT THIS.

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

Finally think you're catching a break because a job you'd actually be really good at opens up where your friend works?
DISCRIMINATORY PRE EMPLOYMENT SCREENING TESTS AND SUBSEQUENT GHOSTING BY THE EMPLOYMENT AGENCY BECAUSE THAT'S PROFESH.

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

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

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

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

I believe you.

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

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

I believe you.

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

I believe you.

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

For You.



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