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I reach out to the truth

Now I face out, I hold out
I reach out to the truth of my life
Seeking to seize on the whole moment to now break away!

Oh God let me out, Can you let me out?
Can you set me free from this dark inner world?
Save me now last beat in the soul.

My entire life I’ve been told there are so many things I cannot do because I am disabled. I’m a victim of both being told there are so many things I cannot do and that Ic an do anything I set my mind to. How these both work, I really don’t know.

As a result, I’ve been trapped in lies. Lies that I’m not good enough. Lies that because I’m disabled, I cannot achieve anything. I’ve been told that I need to not let my disabilities define me or hold me back. It’s confusing. And I need to find my own truth. Make my own truth. Find my own path.

Something I’ve learned is I need to reach out to my own truth. Reach out to it, even. Because it is within reach.

Because it doesn’t matter what I’ve been told. They were wrong.

It doesn’t matter what I believed.  It was wrong.

But what matters is the truth I know now and what I do with it.

 

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To the autistic child

To the autistic child,

Hi! I see you. My name is Nora and I’m an autistic adult. We’re pretty awesome, if I do say so myself. It isn’t easy being autistic, and I wish there are some things that I had been told. That’s why, little one, I’m writing this letter to you. You may not know me, but maybe someday we’ll get to meet each other. Maybe we never will and we’ll only talk on the internet. Either way, you’re loved and so very amazing. Your brain is so COOL! Isn’t it nifty how different people are? Isn’t it nifty how different brains can be?

I don’t want to sugar coat things. Sometimes it’s hard being autistic. You know all those bright lights and loud noises? Yeah, sometimes I want to melt down, too. And sometimes I do. My brain just gets all these signals from different directions all at once and cannot tolerate it. And you know what? It’s okay. It hurts, and it’s okay to let people know we’re hurting. People may get annoyed or frustrated when we melt down, but we simply don’t have the words to articulate what’s going on inside our heads. And you know what? That’s okay. It isn’t our fault that sometimes we’re overwhelmed.

Sometimes, you know those little movements we make? We flap our hands, we rock back and forth, we spin around. We fiddle with toys in our hands or we wear special bracelets or necklaces. Sometimes we chew our shirt collars. Sometimes we make certain sounds. This is called “stimming”. Sometimes it calms us down, and sometimes it makes us feel good. You know what? It’s okay. It helps settle us down in a big, scary world. If it doesn’t hurt someone else, it’s okay for us to do it. Part of taking care of ourselves is doing things that helps us cope, and so that’s why we stim.

Sometimes we find a topic we like and just want to talk about it a lot. Our brains are like soil – the little info seeds take root and grow into various things we just love to talk about. Some people call them “special interests”, others call them “obsessions”. I just like calling them “interests”. Sometimes we just kind of info dump on them, which means just blurting out everything we know about the subject. This is okay! It’s part of what makes our brains special.

Maybe you have trouble doing, what many call, “using your words”. I don’t like that phrase. Words are hard. Not everyone can talk with their vocal cords, and that’s okay! Some people use sign language, which means they talk with their hands. Some people use what’s called AAC, which means they use a special device or iPad app to talk. They type the words into it or tap a picture, and it says their words for them. Little one, all forms of communication are valid. It doesn’t matter if you speak it, move it, or tap it – your words MATTER and we (the autistic community and those who love you) want to hear what you have to say.

Sometimes when we talk to people, we use words we’ve said before. Or maybe phrases we know from video games, TV shows, movies, or books. Or maybe phrases we’ve made up that have special meaning. This is called “scripting”. Sometimes, when we’re asked a question we just repeat it back. For example, maybe we’re asked “Do you want milk or juice?” We might just say “or juice”. This is called “echolalia”. Sometimes people got frustrated that we don’t seem to understand what they’re saying. But most of the time, we do. We just are communicating in the best way we can. But when people can learn our scripts, we can adapt and learn to communicate with them in a way that’s accessible to everyone.

People WILL sometimes talk about you right in front of you. People WILL sometimes say you don’t understand what they’re saying about you, because you’re autistic. People who say they love you may say mean things about you in front of you. People may record your most vulnerable moments, and place them on the internet for the world to see, claiming to raise awareness for you. They’ll claim you don’t understand. I know you understand. You may not look like you’re paying attention, but in your own way you are taking in the world around you. But even if you feel like no one else understands you and no one else loves you, know there’s one person who has never met you who would move the world for you, if she could. Know there is one loyal, passionate person who is fighting for your rights as an autistic child.

Precious child, you are fine as you are. You don’t have to change to fit in. You don’t have to be not YOU in order to be loved and accepted. Some people are autistic. Some people are not. You’re autistic. It’s okay to say no, even in a world that teaches you to say yes and obey every order. It’s okay to let people know you’re in pain. It’s okay to stim. The world wasn’t built for autistic people, and we have to learn to live in it in whatever way we can. Sometimes, people don’t understand our ways but that’s okay, because we don’t understand their non autistic ways!

I hope that one day you find acceptance, and not awareness.

Love,

Nora.

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Sometimes I’m not okay

Sometimes it’s hard being disabled. I talk a lot about how I’ve accepted it and I’ve talked a lot about how I’m at peace with some of the paths I’ve walked down. I’ve talked about how many doors have been shut, and some of the windows just haven’t opened.

But sometimes I’m not okay with it. Sometimes I am just very frustrated with being disabled. I long to get a job, I long to work, I long to do something more with my life than typing on a keyboard or staring at a square device in my hand. It’s hard to see my friends and whatnot working jobs when I know it’s out of reach for me right now.

I try to accept it. I try to say I’m okay with being disabled. And, you know, for the most part I am. It’s the card I’ve been dealt, I’ve accepted it and made the most of it. But yet… sometimes it’s hard. Sometimes I wonder what my purpose is. Why I will be like this… I just find myself questioning WHY.

And I wish I had an answer to why I’m sometimes not okay.

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Child Abuse Awareness Month

April is child abuse awareness month. I don’t need to say in what ways I was abused, because in all reality, it doesn’t matter. I was abused. End of story. The details are for me to disclose when I want to, not for you to decide if I really was abused or not or if my parents “meant well”. I lived there. You didn’t. I am discussing various types of abuse here, so you might be able to figure stuff out based on this and previous blog posts. That’s okay. But I’m trying to keep this particular post vague in order to help people relate.

That said, here is a handy dandy list of NOT helpful things to say to me! Note, this may be different for other child abuse survivors. This is helpful to ME.

DO NOT SAY:

“Well, I was spanked and I turned out fine. Why aren’t you fine?” You didn’t live my life. Spanking is a very controversial topic, and I request that on this specific post you don’t debate it. I did not turn out fine. End of story. Don’t say that to this child abuse survivor, mmkay? (Seriously, do NOT turn this into a spanking debate. That is a firm boundary. I have a very strong opinion on it and others do, too. DO. NOT. DEBATE. THAT. HERE. AT. ALL. Any comments on Facebook about it will be swiftly deleted.)

“Oh, I’m sure it wasn’t that bad.” It was. You didn’t live it. The end.

“I’m sure your parents LOVE you!” They sure did a crappy job of proving it. Doesn’t help to hear that when I have PTSD.

“Well, my parents did XYZ to me, too, and I don’t have PTSD.” That’s nice. I do. I’m glad you had a different childhood than I did (seriously! that isn’t snarky!) but I have PTSD as a result of mine. It isn’t helpful for me to hear “well, I don’t have PTSD” because then my brain warps into bad places and it just isn’t good.

“Don’t you think they meant well?” Sure. Maybe they did. Maybe they didn’t. Doesn’t matter. I was abused.

“But all parents love their children.” Nope.

“They had their own “mental illnesses”. I have an alphabet soup of mental health bullcrap. I don’t abuse people. NEXT.

“That was over twenty years ago that XYZ happened. Why aren’t you over it?” Didn’t know my trauma had a deadline.

“I’m sorry that happened to you.” This is one I’m iffy on. I prefer the wording “I’m sorry someone did that to you” because it takes all the internalized blame off myself. Saying “that happened” makes it sound like it was something out of someone’s control. Someone had control. It wasn’t me. Someone did it to me. It didn’t just “happen”.

“Well, at least emotional abuse doesn’t leave scars.” I have no polite words for that one. And I’m trying to keep this post PG rated to make it more shareable. But… you know the whole “sticks and stones may break my bones, but words will never hurt me?” I believe that’s bullcrap. I also believe there is no form of abuse without an emotional counterpart because of how abuse plays with your very mind and innermost thoughts. So, there IS no ‘just’ emotional abuse. Emotional abuse is the very core OF abuse.

“Did you ask you ask them why they treated you that way?” Um, no? And get abused further? I was hurt once. Their side of the story? Yeah, they lost their right to that when they chose to abuse me. They don’t get to tell their story.

“Put yourself in their shoes.” No, wear our shoes. WHY do we only challenge people to wear the abusers shoes, but not the victim’s shoes? Ask yourself this question. Seriously, why? Why is it never “walk in the child’s shoes”?

“I don’t know how you turned out so normal.” Well, okay? Normal is only a video game difficulty setting… I’ve jokingly said it, but things I say in jest and things people say to me are two different things. I wince so hard at this one.

“But you denied xyz abuse for years! YOU’RE LYING!” No, I was trying to protect my abusers. It’s pretty common. I have psych records saying that even though I denied it, it was strongly suspected. But that shouldn’t even matter.

I am a child abuse survivor.

Do not say these things to me.

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Awareness vs Acceptance

Awareness is talking about all the ways we are not like you.

Acceptance is talking about what makes us US.

Awareness is about trying to change who we are.

Acceptance is meeting us where we are.

Awareness is trying to change our behavior because it annoys you.

Acceptance is encouraging it, because it comforts us.

Awareness is talking about all the things we cannot do.

Acceptance is talking about all the things we can.

Awareness is “special interests”.

Acceptance is listening to our knowledge and infodumping.

Awareness is talking about trying to cure us (Which is eugenics. The ONLY cure for Autism is to ensure we don’t exist. I’m pretty sure being alive is better than, well, not).

Acceptance is adapting the world to us.

Awareness is talking about how tragic our lives our.

Acceptance is celebrating the fact we’re alive.

Awareness is Autism Speaks and Julia the Muppet.

Acceptance is Autism Women’s Network  and PACLA

Awareness is changing your child…

Acceptance is changing the world.

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A heart made fullmetal

I’ve been getting more questions than usual about my URL lately, so I’m taking a break from autism acceptance pieces to finally sit down and write a piece on why I chose my domain and blog title. It comes from the AMAZING anime, Fullmetal Alchemist. And these two quotes:

“A lesson without pain is meaningless. For you cannot gain something without sacrificing something else in return. But once you have recovered it and made it your own… You will gain an irreplaceable Fullmetal heart.”

“There’s no such thing as a painless lesson, they just don’t exist. Sacrifices are necessary. You can’t gain anything without losing something first. Although if you can endure that pain and walk away from it, you’ll find that you now have a heart strong enough to overcome any obstacle. Yeah… a heart made Fullmetal.”

If you haven’t seen FMA, well, you should. Even if anime isn’t your jam. Because it’s that good. I can’t say too much without going into spoilers, but basically guy-loses-his-arm-and-leg-and-his-brother-becomes-a-robot-thing-so-they-try-to-become-human-again. Yeah. Well.

I’ve had a lot of pain in my life. And I’ve made a lot of sacrifices. Life hasn’t been easy for me. And I have rods in my back, which I joke are my own personal automail.

My own heart became automail. My own life became making myself strong enough to recover from the pain thrown at me. It hasn’t been easy. But it’s been worthwhile. It’s been a piece of making my heart strong enough to overcome obstacles.

Hard? Yes. Worthwhile? Well, I wouldn’t want these things to happen to me again. Or anyone else. But it made my heart fullmetal. It took my life and made me stronger. And I’m the champion as a result.

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The Cost of Remission

I am in remission from many of my chronic health things. Which isn’t to say I don’t struggle and I’m not in remission from others. I am not currently in remission from fibromyalgia/chronic pain syndrome (no, my doctors cannot decide which I have. Yes, it’s awesome), from neurofibromatosis, from my neurodivergent alphabet soup…but others I am in remission from. And it comes at an incredible cost.

There’s a delicate balance to keep this going. The things I will NEVER be in remission from and NEVER recover from can trigger the things that can be controlled to spiral again. My diet and my sleep schedule? Require to happen just so. And sometimes my other disabilities prevent that from happening. Which creates a vicious cycle, I know.

Remission doesn’t mean I’m healthy. It doesn’t mean I’m doing well, even. It means I’m doing marginally less sucky. It means that one aspect of my health is slightly less crappy than the other – and that’s not saying MUCH. It doesn’t mean I don’t still struggle. While I may not be actively puking violently from cyclic vomiting syndrome, I still struggle with nausea every day and often have to drug myself to get through. While I’ve been seizure free for years at this point, it doesn’t mean that one day (note: I do NOT have epilepsy. I had non-Epileptic seizures related to a medicine side effect but I’m told they could come back to haunt me) I will not have one again.

It’s hard. I still live in fear of remissions. I live in fear that my delicate balance will get thrown off kilter and that I will no longer be in remission. It’s just so HARD. I fight and I struggle and I try to LIVE and I am scared that one day I will no longer be able to. I am scared that one day I will be longer to be able to do the things I love. I had to leave my passions in school behind. I had to leave my dreams of a career behind. And it’s been a REALLY difficult pill to swallow. It’s been incredibly difficult to realize that yes, I am disabled and yes, I will always be. There’s no way to candy coat it, sugar coat it, make it prettier. I can’t work a job despite having some things in remission because others just aren’t and it isn’t feasible for them to be despite being on all the best medications.

I wrote this in the middle of the night, while listening to music, and scheduled  it to publish during my neurologist appointment. I don’t have a normal sleep schedule. I don’t have a normal eating schedule. Nothing about me is normal…and it’s a ticking time bomb in some ways. It’s a mess but at the same time, it’s my mess. It’s my life. I’ve accepted it. Embraced it. And am moving on with it. Because it’s all a part of who I am. The bad health stuff, the good health stuff, the alphabet soup of brain cooties. It all adds up to me. And while remission comes at an incredible cost… I’m okay with that.

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I didn’t graduate college, and that’s okay.

I didn’t graduate college.

I have a massive pile of debt. Debt I will never be able to repay. I have loan companies calling me daily telling me I have to pay when it’s literally impossible. I have a cap and gown that I’ll never wear. At times, I still daydream of the degree I wanted so desperately and came so close to getting.

I didn’t graduate college.

College classes aren’t designed for disabled students. While schools have disability services, they aren’t always to make classes Nora-compatible. My immune system is too week, I get stressed out too easy, I get  too severe of sensory overload, I simply can’t people, oh, you get the picture. They can’t custom craft a class to be perfectly okay for me, because then it would make it inaccessible for someone else.

Part of learning, part of growing, part of acceptance has been coming to terms with the fact I won’t get my degree. I was merely a semester and a half away. But my classes cannot be completed in the state I am now. I didn’t graduate college.

But I am not worthless. The fact I don’t have a degree doesn’t mean that I failed as a person. It doesn’t mean my classes were worthless – I learned a lot. It doesn’t mean that I am worthless – not everyone gets a college degree. I still write a blog. I still advocate. I’m still an activist. I still do so many fun things with my life!

I don’t have a degree. Sometimes I do get stir crazy without classes or a job, hence why I’m trying to find a volunteer thing. I’m not happy just sitting around doing nothing on the days when I feel well enough to do things. I try to do what I can, but it’s really hard when society is designed to go against disabled people.

But I am worth it. I am worth trying. I am worth doing things. And that worth isn’t defined by fancy letters after my name or a really expensive piece of paper.

 

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Adventures with Anxiety-Girl: now with extra anxiety powers!

Hi, my name is Nora and I have anxiety.

I have officially diagnosed general anxiety disorder, OCD, and a smattering of phobias as well as suspected social anxiety. This makes life, well, interesting at times. Living with anxiety isn’t easy. Living with anxiety is kind of like living with someone who is constantly abusing and gaslighting me, only that person is me and lives inside my own head. It’s horrific.

I feel that a lot of times, people think I use my anxiety  as an excuse. No, it is’t that I just don’t want to make a phone call. It’s that I literally feel physically ill before making them. I often wind up shaking before and after making them. It isn’t just unpleasant, it’s literally uncomfortable and often times actually physically painful. I’ve had full blown meltdowns and thrown up simply because I have to make a phone call. It isn’t attention seeking, it isn’t guilt tripping. Making that phone call is sometimes actually, really and truly, impossible.

While I’m an introvert and hardly a social butterfly, I’m also bubbly and outgoing. I like going out and doing things. However, anxiety!brain is sometimes plaguing me with “what ifs?”. What if this happens. What if that happens. What if if if if if…and starts to spin me into a downward spiral of despair that is neither productive nor helpful.

I have been this way since I was a young child. I don’t know what it’s like to not have anxiety. I replay convos with friends over and over in my mind, before and after they’ve happened. I honestly had no idea that people existed that didn’t obsess over everything they said or everything someone else said. When I started texting, I didn’t know it wasn’t normal to panic over words on my screen.

Sometimes I’ve seen people ask “what’s one thing you wish people understood about xyz?” There isn’t one thing I wish people would understand. I just wish that people would realize that it ISN’T simple like that. Just understanding one aspect of it won’t magically make my life easier. Just understanding that hey, sometimes I can’t do the thing you want me to do or something I have to do things differently so anxiety brain doesn’t cause me to have a panic attack doesn’t really make a big difference. What I DO need you to do is to stop shaming us.

Different people cope with their anxiety differently. I choose to medicate. For me, it’s the best choice. I can tell a difference in when I take my meds and when I don’t. For ME, Nora, medication is the right choice. I will not, and should not, be shamed because I choose meds. However, for someone else, medication may not be the right choice. It may make it worse, or they may plan just not want to take medication. And you know what? That’s their choice too. Just because we have psychiatric disabilities doesn’t mean we should be denied agency.

Anxiety always has, and always will, be a part of my life. I’ll never fully live without it. Through self care and accepting my limits, that’s what living looks like to me. That may not be it to someone else, and that’s okay. But this is my edition of adventures in Anxiety Girl! Your milage may vary.

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Who I Am Hates Who I’ve Been

I am learning.

I was once racist. Ableist. Homophobic. Transphobic. Against myself, against my friends, against people I didn’t even know. I was raised evangelical conservative Christian. Anything outside of my bubble, anything outside of what I knew was really HARD to accept. Because, you see, I had the BIBLE on my side. I was RIGHT and they were WRONG. Their feelings? Didn’t matter. I am really glad social media wasn’t a thing when I was in middle school because I’m pretty sure I would have had an epic case of being a major butthead. I was pretty active online starting around age thirteen, and I outright cringe at stuff I wrote. And this was just on message boards and such! Twitter didn’t exist until shortly after I graduated and Facebook wasn’t open to high schools until during my senior year. My brunt of social media was on Myspace. Yeah. Myspace. 😉 And Xanga and Teen Open Diary and Neopets and, well, you get the picture. Social media was just a baby. And so was I.

I’m sorry for the person I became.
I’m sorry that it took so long for me to change.
I’m ready to be sure I never become that way again
’cause who I am hates who I’ve been.
Who I am hates who I’ve been.

I was young. The internet was young (at least, compared to the form it is in today). I am really glad that one of the Christian message boards I was active on (hi there, Zeeps!) kinda imploded because I’m sure I said some things that would make me want to hide forever now. But the message board literally doesn’t exist so you can’t find it. WHEW. Even reading back journal entries I wrote back when I started Forgotten Regret (my previous blog) in 2010, I cringe at stuff I said.

You see, I thought I knew so much. I thought I was so wise. I did say some good things. But I also said some horrible things. Because you know what? We’ve all done it at some points in our lives. Even if our -isms are internalized, even if we’ve never spoken our thoughts, it’s not something any of us are innocent of. But what matters is what you do once you know better. What matters is what you do once you are told that you need to sit down, shut up, and listen.

It’s hard for me, because I don’t want to admit that I’ve said some really awful things in my lifetime. It’s hard for me to admit that I was once one of the people who cracked “Adam and Steve” jokes. It’s hard for me to admit that I said things that are hurtful to some of the people I care about most. But I was wrong. And I’m sorry. And I’m doing my best to make it better. I’m doing my best to show I’ve changed. It isn’t easy. Change is hard. Heck, I’m autistic. I like things the way they are and I don’t like having to change. 😉 But I can change. Even though it’s hard. Even though it’s difficult. It’s a lesson we were taught in The Lion King, kids!  He said that change is good! He also said this:

““The past can hurt. But the way I see it, you can either run from it or learn from it.””

Yeah, the past hurts. Yeah, it sucks knowing we’ve screwed up in the past. But do we learn from our screw ups, or do we run from them? Do we accept we screwed up when confronted and challenged by things we said, or do we double down and gaslight people? Making mistakes is okay. What matters is what we do when we’re called out.

So I am pledging this.

I am pledging to do better. Know better, do better, they say. I am pledging to accept that I’ve made mistakes in my past. I am pledging to make amends to the people I’ve hurt. I am pledging to do my best to make things right again. It isn’t easy, but it’s good.