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This year, I’m tired.

I keep trying to write something for “Autism Awareness Day”, or what my fellow autistics are trying to change into “Autism Acceptance Day”. I’m trying to write something articulate, something profound, something that will challenge people and make them think. I have so many words circling around in my head, but trying to get them to my keyboard is hard.

I feel like the things I say are controversial, and they shouldn’t be. It shouldn’t be controversial to say don’t abuse us, and yet it is. In the past week, I’ve read grizzly stories about abuse toward autistic children (I am not sharing the details. They’re unnecessary. But suffice it to say they’re horrific). I’m tired of defending children’s right to exist.

I’m tired. I am so tired, and I am so worn out. Advocacy is my passion, activism is what gets me pumped. I’m tired of having to fight for my right to exist. I’m tired of telling people that their awareness campaigns are acutely harmful. I won’t stop – it’s impossible to shut me up, but dammit, I’m completely worn out.

And so. This year I’m asking for compassion. For understanding when my words jumble. For supporting when I burn out . 

All I’m asking is for you to listen to our voices. All I’m asking is for you to amplify our voices. We’re telling you what we need. We need acceptance, not awareness.  We need you to help us fight against rampant ableism, because we’ve been doing it for years and we’re ALL TIRED. Because we’re autistic, we’re silenced. And that’s not okay.

This year

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The concept of okay

As someone with psychiatric disabilities, something I’ve been asked a lot is “Nora, are you okay?” That is such a loaded question. Like, how do I define okay? What is okay? When am I not okay? How do I know if I’m okay or not? Are there levels of okay? What if what is okay one day is not okay another day?

I am so used to saying I’m fine, to saying I’m okay, to saying everything is awesome when in reality, it’s not. It’s hard – like, I may not be in acute crisis, but I also may not be okay, you know? Dealing with my brain, dealing with depression, dealing with anxiety… it’s just so hard sometimes.

What is okay?

What is fine?

How do I learn to define these things? I mean, it isn’t like my okay would be my best friend’s okay because okay is so relative.

And why are we so quick to jump to these things that are so abstract and near impossible to define? When okay can be fluid? When okay is literally impossible for me to define?

I don’t know if I’m okay. I don’t know if I’m fine. I don’t know what those words mean in context of my mental health. And I don’t know that that’s necessarily a bad thing?

There’s so many layers and feelings wrapped up inside the word okay. I’m a constant ball of anxiety, fueled by depression. I always feel like I’m teetering on a dangerous balance beam and the smallest little stub of the toe can send my entire world collapsing. There’s so many variables that are essential to my world being survivable – and when they’re not things quickly pile up.

I hate the weight of the word okay. I hate that I feel I have to be okay. I hate that I feel I have to have all my crap together and know what these things mean. Right now, I’m existing. I’m surviving. It’s what I am doing right now. It may not be okay, it may not be fine, but it’s where I am at this point in my life and that alone is enough.

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That’s where my demons hide

We all battle our own demons. We all have our own fights, our own struggles, our own turmoil. And lately? Honestly? Things have been really hard. It’s hard for me to admit I’m not okay, it’s hard for me to admit things aren’t easily. I’m able to talk openly and candidly about my physical health. Talking about being autistic? That’s easy, too. But when it comes to my psychiatric disabilities, talking about the alphabet soup in my brain… that’s so much harder. I can allude to things and I can say things here and there, but being truly open and candid is hard as hell.

It’s becoming a problem in my day-to-day life. You see, my method of dealing with my emotions and feelings is the “fuck everything and run” method. I stuff my feelings down; I pretend my emotions don’t exist. While there is a time and place for that way of coping, it currently isn’t a good strategy. It winds up in things getting worse, spiraling more and more, etc.

And so here I am, being vulnerable. Admitting that right now? Things are hard. Things suck. Depression is kicking my ass, and I’m struggling to talk about it and the reasons why. Anxiety is consuming me. I feel trapped. I feel stuck. I’m afraid to be open. Why? The reasons are likely bullshit. It’s just my brain playing tricks on me. But I’m terrified to let people – even the ones I care about and the ones who care about me the most – in. I’m afraid of being judged, I’m afraid of being weird.

I hate that I feel I have to hide my demons. I hate that I feel I have to keep my struggles silent. I hate that so often, I try to downplay my mental health and not admit how things really are going.

If you feel like this, if you can relate to me, you’re not alone. People care, and people want to help. The thing is… we have to let them. I know, “Nora, you’re telling me to let people help when you’re admitting it’s hard for yourself!”

Well, yeah. It is hard for myself. But it’s something I’m learning that is okay to do, trying to get better at, and truly allow people to help me.

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When doing the thing seems impossible

I hate how hard things are some times. How I balance two extremes – when faced with extreme emotions, I even break down or shut down. There’s no middle line, there’s no balance. It flips from one to the other, and it’s so frustrating for both myself and those around me.

I hate how simple things are so overwhelmingly hard. Like household tasks, simple self care, etc. There isn’t even a way to articulate why it’s hard because even that is, well, too hard and too overwhelmingly lazy.

To those outside, I look lazy, I look selfish, I look like I blow things off and don’t care. But I do care, and I do want to do things. I want to be productive. I want to do the things I need to do in life, instead of doing, well, nothing. But when you have poor executive function, it just seems so impossible.

I break down tasks to try and make them easier, but it doesn’t always work that way. I have other people help me when possible, and it still seems so overwhelmingly. I so quickly go into disaster mode that it makes it such a delicate act to try and even do the most basic tasks.

I don’t even know why I’m writing this – I don’t have any profound advice on how to do the thing, I don’t have anything new to say that people haven’t heard before. But maybe it’s to show other people that the way they’re doing things isn’t weird or isn’t wrong – that for some people, it’s just HARD and that’s okay. Finding your own way of doing things is fine, Doing things in an unorthodox way is fine.

It’s just too bad society seems to struggle with those who don’t do things in the traditional cookie-cutter ways, so it’s those who need to break out of the mold the most that suffer as a result. Because while our ways work for us, society nopes out of them. But there is nothing wrong with our way, even if it’s not “normal”.

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If there’s any hope for love at all, some walls must fall

Some walls are made of stone,
Sometimes we build our own
Some walls will stand for years,
Some wash away with tears
Some walls, some walls

Anyone who knows me knows that I’m a ball of nerves and anxiety. Most people know I have a fairly traumatic past, albeit  bits and pieces of the details. And many have asked how the heck I survived  it. They’ve asked how I’ve gotten through. I’ve always just kind of shrugged – I kind of survived to prove the whole world wrong that I couldn’t (want me to do something? Tell me I can’t or tell me it’s impossible. I WILL prove you wrong.)

I survived by building walls. It wasn’t safe to cope with things as a child, it wasn’t safe to let anyone know how broken and upset I was. So I built walls. For years, those walls have kept me safe. It’s how I survived a painful childhood, it’s how I coasted through college. I wasn’t in a safe place to cope, I wasn’t in a safe place to deal with with everything being thrown at me.

Some walls are lined with gold
Where some hearts stay safe and cold
Some walls are made of doubt
Holding in and keeping out

And so, I built careful walls to keep myself safe and to, quite literally, survive. I didn’t know who was safe and who wasn’t. I’d been backstabbed so many times that the thought of letting anyone see past the walls was terrifying. I’d break down the walls, little by little, and then realize it wasn’t safe and go back into hiding behind the walls.

After so many years of hiding behind careful walls, it has a tendency to blow up spectacularly  in your face. You see, those walls have been up to keep my heart safe. To make sure that no one can hurt me. But here’s the thing.

How will you ever know what might be found
Until you let the walls come tumbling down
If there’s any hope for love at all,
Some walls, some walls must fall

It took years for me to build the walls, years of closing people out and pushing the world away. I don’t know how to let the walls fall. Everything has been cooped up, pushed in, so tightly protected for so long that while the walls need to come tumbling down, I am absolutely terrified of what will happen if I start breaking down the walls. It feels like a dangerous game of Jenga – that if just one brick is removed, things may stay stable but if too many bricks are removed, everything comes crashing down out of control and I won’t be able to stop.

But yet…if I want love to win, if I want to ENJOY my life, if I want to THRIVE, the walls have to come down and I need to deal with the reasons I built them in the first place. If I want to live without fears, pain, and anxiety consuming me…the walls need to come down. I just have so many fears of what will happen if I let the walls come down. But what is scarier? Living with the walls I know and the familiarity of depression and anxiety  or finally seeing what is beyond that? Which one is more worthwhile? I just don’t know how to bring the walls down, but I think I’m finally ready to learn.

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the very same fear that makes you want to die, is the same fear that keeps you alive

From the very same fear that makes you want to die,
Is the same fear that keeps you alive

It’s kind of weird. I don’t know what it’s like to not be depressed, to not be anxious. Because I was so young when my trauma started, I don’t know what it’s like NOT to have depression, anxiety, what my life was life Before Trauma. It’s weird, in a way – because this is what I know, the thought of getting better? The thought of not being consumed by things? It’s absolutely terrifying.

I’m not currently suicidal, though I have been in the past. But it’s odd. I was terrified to stay alive. I was terrified that things wouldn’t get better. I was scared to death that things would never change, that I would never see a difference. But at the same time, that very same fear is what kept me going.

Fear often fuels me.  In both good ways, and bad ways. At one point, fear is what drove me to the brink of despair, it’s what drove me to self injury. It’s what kept me from moving on with my life. But yet? At the same time, fear is what inspires me to keep going. It’s what keeps my fire burning because I want to see what happens next.

So often I’ve been told that fear is a bad thing. But I don’t know that it always is. I don’t know that fear is always a horrible thing. Fear is often what kept me safe as a child. Fear is often what made me determined to prove the world wrong. It’s ultimately a matter of what we DO with our fear that matters, not fear itself.

Lyrics from War on Drugs by the Barenaked Ladies

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Ableism and Memes

There is something that has really been frustrating me lately, which is why I’m writing a blog entry at nearly 11 pm on Sunday evening after being out of town for nearly a week. But I can’t not say it anymore. I can’t keep quiet about this level of ableism.

There are a couple of memes that are really popular on Facebook lately. They come and go. One of them is a math problem, and implies that there is something wrong with you if you can’t solve it. These happen a lot. The other one is an image, and it implies if you can’t spot the difference, if you can’t see what’s wrong with it, you’re also somehow lesser than.

STOP.

That is ableism.

Not everyone is good at math. I failed multiple math classes at college level. I barely scraped by eighth grade math. I have a learning disorder and as a result, math is very difficult for me. And yet, people make comments like “if you can’t solve this, you shouldn’t be able to breed.” “If you can’t solve this, you shouldn’t be able to vote.” “If you can’t solve this, *insert insult here*”. Okay, really? That’s offensive. I don’t need to be able to solve what to you is a simple algebra problem in order to be a member of society. There’s no reason to belittle those who cannot solve them. If you can? Great! If it is something you struggle with and still manage to figure it out? I’m proud of you. But for some of us, it isn’t possible. For some of us, no amount of trying can make something click in our brains that we literally are incapable of. All it does is hurt us. All it does is make us feel lesser than.

Then there’s the vision memes. You know. “If you cannot spot the red panda, then you don’t deserve to be on the Internet. “If you can’t see the problem, blah blah blah.” Again, stop. There are SO many reasons why this level of ableism is infuriating. It insults blind and low vision people. It insults people who may not be able to focus to find the thing. It mocks those who have very real struggles, and are actually amazing people – their brain just doesn’t work as your brain might.

I know, I know, someone is going to come back with “Well, I didn’t mean people like *you*. You’re obviously smart.” SHUT. UP. If you don’t mean the ones like me, then which ones did you mean? I’ll let those words sink in. You mean the ones that you pick and choose to not be good enough, right? The ones who were disadvantaged by no fault of their own. The ones that society already mocks and looks down on, because they don’t meet your bullcrap levels of good enough.

It’s absurd and ableist to base self-worth, intelligence, and basic rights to people based on just some viral meme. So knock it off.

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To the person who sent me a nastygram

I am disabled.

My disabilities and my health issues, both visible and none, psychiatric and other types, hinder my various abilities in life. I don’t know what it’s like to be able bodied. I don’t know what it’s like not to have a disability.

Being disabled is hard. I sometimes lose things I love – like events I’ve been looking forward to for a year, friendships, certain aspects of freedom. I cope by talking about it.

Like a lot of people in my age demographic, I opened a Sarahah account. I knew I was taking a risk. But I got so many nice, sweet compliments and when I’d feel down, I’d read them and feel better.

But there’s always that one.

“You talk about your health problems too much and it makes you seem desperate for attention and pity. Grow up.”

I don’t do it for attention or for pity. I do it because it’s my life. I do it because it’s the reality of how I live. I literally don’t know life without being disabled.

I assume you wouldn’t tell someone who posted constantly about their kids they were desperate for attention and pity to grow up, right? After all, they live with their kids and see them every day. Most people are okay with people talking about their kids and don’t write them off as immature.

What if someone talked about their hypothetical job constantly? Again, they must be desperate for attention and pity, right? No, I guess not.

So WHY is it so taboo to talk about my health constantly? It’s what I live with every day. Juggling doctors, juggling appointments, finding the fine balance between what I can and can’t do is incredibly difficult. I talk about my health problems. I actually have been working on posting it less.

Disabled people are often put up on a pedestal to admire, we’re expected to be inspirational, we’re expected to defy the odds. But not all of us do. Not all of us defy the odds. And there’s nothing wrong with that.

I don’t know who you were. I don’t know who you are. But please, just delete me from Facebook if you’re that annoyed with me talking about my life and existence as  attention or pity? I honestly don’t give a crap if anyone comments on my stuff. If anyone feels bad for me. I just want to talk about my life and my existence as it is.

And finally? Saying something like that anon, and telling me to grow up is actually hilarious. Pretty sure that means I’m not the one who needs to “grow up” if you’re sending anon nastygrams. There’s a delete or block button, and I suggest you utilize that if I annoy you that much.

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Smashing the OCD stereotype

I have OCD.

Yeah, I know. I’m not a neat person. My room is best defined as the name of one of my college radio shows, premeditated pandemonium. People find it hard to believe that I have OCD because I’m not a germaphobe and I’m not a neat person.

But it doesn’t change the fact I have OCD. OCD isn’t just about being clean and tidy. OCD is recurrent and persisting   thoughts.  OCD is about obsessions, not just compulsions. And those obsessions can take the form of thoughts. Of your brain looping things over. And over. And over.

Bad events that have never happened and never WILL happen loop in my brain. “What ifs” loop my brain. I check things that have been checked. Again. And again. I ask questions I’ve asked. Again. and again. I repeat myself. Again. and again.

Because I’m TERRIFIED of what will happen if I don’t. 

OCD isn’t just about being neat.

I don’t want these thoughts.

I don’t want my brain to be like this.

But I literally can’t control it.

I loop bad events that have never happened, that never will happen, in incredible detail in my brain. It’s terrifying. It’s scary. I feel like a horrible, horrible person. I’m not. I’m literally not in control of my brain and there’s nothing bad about me for being like this.

You see, OCD isn’t a one size fits all disorder. The stereotype of the Danny Tanner-esque germaphobe isn’t what OCD is for everyone, or even the MAJORITY of people! You can have OCD without obsessing over cleaning. You can literally obsess over anything. Your compulsions don’t have to be to keep things clean! Your OCD is still real and valid even without these harmful stereotypes.

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Let that be enough

My hearts breaks every time I see a fellow autistic believe they are a burden. My heart breaks every time a fellow autistic thinks they aren’t enough. My heart breaks every time I see a fellow autistic think they don’t deserve accommodations, that they’re asking too much, that they should just suck it up.

You aren’t a burden because sometimes you need things reworded in a way that you understand. You aren’t a burden because sometimes you need silence and sometimes you need noise. You deserve to have a place you thrive in for work and school or anything, really. If that means you need noise canceling headphones, if that means you need to do it in a seperate, dedicated room – that’s okay! There’s nothing wrong with that.

If you need expectations written out and not just, well, expected  of you, that’s okay! That doesn’t make you a burden. Just because it’s not what the majority of the world seems to thrive on doesn’t mean it’s what YOU need to thrive on.

If you need to take a comfort object, if you need to stim, if you physically cannot sit still, that’s okay. You aren’t hurting anyone else by stimming, you’re doing what makes you comfortable in a very scary world.

Your existence is not a burden. . Neurodiversity is natural. You are WORTHY of the help and supports that you need to THRIVE in the world. Just because someone needs different, more frequent, or what you deem as “easier” accommodations, doesn’t mean that yours also don’t exist and that yours aren’t worthy.

The accommodations I need due to being autistic may be different than the ones someone else needs. That doesn’t make theirs more or less important than mine; it doesn’t make theirs more or less valid than mine. They still exist, because that PERSON exists. 

You are a beautiful, worthy person who just happens to be disabled. You’d beautiful and worthy and perfect without that disability, you’re beautiful and worthy and perfect with the disability. Accommodations make it so that you can enjoy and thrive in the world as you deserve to!

There’s nothing wrong with asking for help. It doesn’t mean you’re weak. There’s nothing wrong with needing supports. It doesn’t mean that you’re a burden. There’s nothing wrong with needing help sometimes.

You exist. You’re worthy. You’re loved. You’re valid.

And just for today, just for now, let that be enough.