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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 Hate All Your Show

Otherwise titled “Jesus thinks you suck.” Nicely, I mean. In his Jesus-y way. Let me elaborate.

One of my favorite Christian songs is “Instead Of A Show” by Jon Foreman. The lyrics are lifted directly from Amos 5.

I hate all your show and pretense
The hypocrisy of your praise 
The hypocrisy of your festivals
I hate all your show 

Away with your noisy worship
Away with your noisy hymns
I stop up your ears when you’re singing ’em
I hate all your show

Instead, let there be a flood of justice
An endless procession of righteous  living, living
Instead, let there be a flood of justice
Instead of a show

Your eyes are closed when you’re praying
You sing right along with the band
You shine up your shoes for services
There’s blood on your hands

You turned your back on the homeless,
And the ones who don’t fit in your plan
Quit playing religion games, 
There’s blood on your hands
Instead, let there be a flood of justice
An endless procession of righteous  living, living
Instead, let there be a flood of justice
Instead of a show
I hate all your show 

I hate your show, America. I am sick of it. I am sick of you claiming to be a Christian, but you’re denying hungry children food.  You’re cutting funding for a program that feeds hungry veterans (as well as elderly). You’re overturning the ACA, which will KILL my friends. 

So, you know how the entire Bible is Jesus being all “PEOPLE NO!” and people are all “PEOPLE YES!” And Jesus is like “Oh my me, seriously, people, DON’T!” and people are like WATCH ME? Yeah, that’s still the world we live in. Jesus is all “AMERICA NO!” and Trump America is all “AMERICA YES!”

I am sick of fighting for my rights.
I am sick of crying because my friends are hungry, because food stamps is a joke in America. When I was poor and struggling? I got twenty some bucks a month. That was it. I’m still poor and I’m still struggling, but I make do because I have friends who can help me. Not everyone has that luxury. I am one of the “lucky” ones.

I am sick of people trying to take away my health care. “I don’t mean the people like you, who really need it”. Oh? Then which one of my friends DO you mean? I recently fought with someone on the children’s hospital page because they decided that since I’m capable of posting on Facebook, I’m capable of working. I WISH that were true. If I could get paid for being an advocate, if I could get paid for writing accessibility policies, trust me, I would. But a job does NOT exist for everyone. I would need things that just aren’t feasible – ample sick time (for everyone – I have a very weak immune system, so I can’t work around people who are sick. They need to be able to take off, too. I need to take off for appointments. And days when I’m sick), excellent insurance, numerous in-house things, etc.

Here’s the thing. Our system is broken. It needs to be fixed. But taking away food and health care isn’t the way to go without it. Jeopardizing lives isn’t the way to do it. It’s not what Jesus wants. It’s not what He would do.

He would love.

He would heal.

He would help.

He would do the Jesus-y thing.

He hates your show, too, America. And he sees right through it.

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Autism and Sexism

Many times, I’ve been told that autism presents differently in girls.
Many times, I’ve been told that girls are less likely to be autistic.
Many times, I’ve been told that male autistics are different.

I’m here to tell you that’s sexist.

Autistic girls are NOT different from autistic boys.

Autistic girls do NOT “present differently” from autistic boys.

This is sexist.

At one point, I thought it was eye-opening to read articles about how autistic females presented differently. And then I realized that was my own internalized ableism and sexism talking. Now I am ashamed of myself.

By saying it presents differently, we are erasing non trans and non-binary experiences. What does it say to someone non-binary, if we constantly talk about the diagnosis within the gender binary? We say that autistic males are xyz. We say that autistic females are abc. But what about those who are not? If you fit in those boxes, well, good on you. But we weren’t made to fit in neat little boxes. In fact, by clinging to these things, we are enforcing gender stereotypes. Which is bullcrap.

I know people who have come to their autism diagnosis by reading about how it presents in girls. Which is fine and dandy. But realize that those lists come rooted in sexism. You now know better, so DO better. A female doesn’t need a different form of support than a male because she’s female, she needs different forms of support because she’s HUMAN.

I don’t fit the neat checkboxes of autism in girls – I don’t have a high IQ because my learning disorders make IQ tests impossible. Despite being a straight A, honor roll student my IQ is actually quite low. This is called being twice-exceptional,  where I am so-called “gifted” but struggle with multiple learning disabilties (and the concept of gifted is problematic but that’s another blog post).

Many of my so-called “special interests” (oh mylanta, I hate this term. This is another blog post. That’s two, two blog posts promised in this one. -count von count voice-) line up more with what is considered boyish. If you google “autism in girls checklist”, you get dozens of super gross checklists.

Because I present as female, it doesn’t mean my autism is different than someone who does not. It means it is different because I am human. Just like anything else on my massive checklist of “how many things Nora has been dx’d with”, it is different from person to person. There is nothing unique about my autism solely because I have a vagina. It’s different because I am Nora. Yes, autistic girls sometimes present differently from autistic boys. But autistic girls present differently from each other, just like autistic boys do.

That isn’t to say there aren’t atypical autism traits. There are. That isn’t to say autistic women aren’t disabled. They are. That isn’t to say it isn’t sexist to say that girls are less likely to be dx’d than boys are. They are.

I’ve talked about this with my friends. Some of us male, some of us female, some of us non binary. My friend Leila said in one of our discussions that “all the articles etc. that I’ve seen about “Autism presents DIFFERENTLY in girls!” is all about how autistic boys are mathematical and logical and emotionally withdrawn, and autistic girls are creative, intuitive, emotional artist-types, and, like… that’s just regular old sexism with “autism” in front of it.”.

This is true. Think about it. If we remove the word “autism”, people would be PISSED. “But my son is a creative artist!” “My daughter is a brilliant mathematician!” Yep. But yet, somehow it’s magically okay when we try to make an autism dx fit gender stereotypes. We must question ourselves. WHY? We get pissed off when we try to assign stereotypes, but when it comes to neurodivergence, it’s somehow magically okay?

Why? Do we feel that autistic girls need coddled more? Do we need to make sure we know that they aren’t like THOSE autistics? It’s a form of supremacy, to be honest. And that’s ableist, sexism, bullcrap. Do we feel that they’re superior, because they pass better? (Newsflash: autistic females don’t. Some autistic females pass, some autistic females don’t. Some autistic males pass, some don’t. Some non binary pass…oh, I could go on all day. You get my point).

That’s not to say it isn’t okay to talk about autism and gender. It is. That isn’t to say that it isn’t important to boost female autistic voices. It very much is. Everyone’s voice needs heard – no matter what their gender is.

But when we say we want to smash gender stereotypes, when we say we’re feminists, when we say we’re for equality…we’ve got to include disability in that. And disability includes autism.    It includes realizing that even when we don’t realize it, our thoughts are often rooted in sexism. I’m guilty of it. I’m not immune to call outs. I even used to like and share those posts that talked about how different autistic females are, thinking I was helping my friends. Thinking I was helping making voices heard. Until I realized and questioned why I was sharing it. Until I realized that I was contributing to sexism. Until I realized that no one fits into that neat little box – myself included. Until I accepted that I don’t have to keep lying to myself, to who I am, to make myself fit into the “autistic female presenting” box. I’m still autistic. I still present as female. It’s okay that I don’t meet everything on that checklist – it doesn’t make my DX any less or different.

It’s sexist, plain and simple, to say that autistic females present differently. I think it’s important for us to discuss this. I think it’s important for us to boost female voices, yes. But that doesn’t mean that that, in and of itself, has problematic roots. It means that we realize that we don’t present differently because of what our bits and pieces are or because of what our gender is, but it’s simply because we’re HUMAN and we each have our own jam

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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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Beyond awareness

It’s time to go beyond autism awareness. People are plenty aware that autism exists. Every year, the number of autistics murdered by their caregivers grow. This isn’t from a lack of awareness or services. This isn’t from people not knowing awareness exists. Awareness does little for us anymore and in reality, awareness is ableism in a prettier package.

It’s time to go beyond autism awareness. Awareness is Autism Speaks. Awareness is furthering the cycle of our abuse. Of eugenics. I don’t want your awareness. I don’t want you to light it up blue. I don’t want you to talk about what a tragedy it is to be autistic. I don’t want you to talk to me about how some autistics are superior.

Awareness is bullshit. Awareness is being told that I’m not like “those autistics”, because I attended college. Despite the fact I dropped out, due to a combination of my needs not being adequately met. One of those being my autistic needs. Awareness is telling me that I’m not like THOSE autistics who will never leave home, despite the PCA mess I had and wound up unable to live completely alone anymore.

It’s time to move beyond awareness.

It’s time to move toward acceptance.

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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.

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Yes, I am a “keyboard warrior”.

Why I am a keyboard warrior.

I have seen a lot of memes and posts over the years trashing so called keyboard warriors. Also known as “slacktivists”. It seems that since we use our keyboards to speak out and we’re deemed to be hiding behind a screen, our opinions and voices aren’t valid. I’m here to tell you that’s ableist.

There are many reasons why I choose to use my blog and Facebook as a platform. And when you try to tell me that isn’t valid, you’re being ableist. It’s flat out gross to imply what I say isn’t worthwhile because it isn’t possible for me to do it in what you deem to be real life.

I can’t attend protests. It doesn’t  mean I don’t want to. It doesn’t  mean I don’t care. But what it does mean is that due to anxiety and being autistic, for me it simply isn’t possible. The mere thought of attending one makes me physically ill. It doesn’t mean I’m not willing to help organize one, make signs, etc. And frankly, what is needed isn’t always bodies at protests. It’s one thing if you’re at a protest, but there’s also value in behind the scenes work. Your health is still important and if attending a protest isn’t a part of taking care of yourself, is it worth the cost for you? For some people, it is. For others, it isn’t. And either option is okay.

Here’s the thing. We can make a difference from behind our screens. It sometimes is large scale, it sometimes isn’t. Changing a friend’s mind is making a difference. Offering a new perspective is making a difference. Sharing an article is making a difference. Making a difference and being an activist isn’t always adding a new voice or a new perspective. It’s something amplifying what is already out there. It doesn’t mean that I’m lazy or I don’t care because for me, the best form of being an activist is by typing.

It’s ableist to say that I should just shut up. It’s ableist when you tell me that I’m not making a difference. It’s ableist when you call me lazy for choosing this form of speaking out. It’s ableist. Not everyone can do every form of activism. And that is healthy and OKAY.

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I was once a self-professed grammar nazi. (I now wince at that wording. Like, wow. “Nazi” is NOT a good choice of words there!”). I gleefully corrected the grammar of anyone who was wrong. I didn’t care how blunt I was; I didn’t care how I made them feel. What was important was pointing out that they were WRONG and I was RIGHT. Thoughts and feelings of others? Didn’t matter to me. The thought that I could be hurting someone on the other side of a screen? Well, why did it matter, right? Didn’t they know that they were wrong and shouldn’t they be glad I’m helping them learn grammar?

But then I realized some things. Insisting on proper grammar is racist. (EDIT: this article was shared not because I agree with the author. I disagree with the writer and agree with Chalabi. This is an example of someone disagreeing with it. It’s still racist. There are a couple good points in the article but it’s an example of someone being the unnecessary type of grammar snob as well) It’s classist. It’s ableist. AAVE is proper English, even though people seem to be quick to correct it. And quite frankly, it has no place in the social justice movement. It is almost important to keep in mind that many more people are using phones or tablets, which make grammar errors even easier to happen. Autocorrect, typos, it all happens so much easier. I mean, just today I messaged my roommate with “booby dungeon” instead of “bonus dungeon”, so, like, I know perfectly well how easy it is to fall down the autocorrect hole. 😉 Continue reading

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It’s time to trust my instincts, close my eyes, and leap

I’m through accepting limits, because someone said they’re so
Some things I cannot change, though till I try, I’ll never know
-Defying Gravity, Wicked

I am fiercely stubborn. If you tell me I cannot, I will. If you tell me not to do the thing, guess who is going to do the freaking thing? I have a love/hate relationship with this trait. It makes me an awesome Hufflepuff because it means I will kick the butt of anyone who hurts my friends. At the same time, it makes it hard and painful to walk away from friendships that are not healthy for me.

I have trouble trusting my instincts. My entire life I’ve been told they’re wrong. That I need to do what the world tells me to do. Sit down, shut up, be quiet, be still. Even though all these things are literally physically difficult for me. I fidget. I stim. I’m vocal at times. But sometimes I trust that instinct. Sometimes I close my eyes, and leap.

As a disabled adult, I’ve been told so many things I can never do. I’m tired of accepting those limits. There are some limits I have accepted, and others I have not. I have accepted that I will never go back to college and never have a job. I refuse to accept that my life is not worth living. That I still can’t be an advocate and an activist. I refuse to accept that my life has no value, just because I cannot live up to what society says a “good person” should do, what society says someone who contributes to it is like.

I’m funny, I’m loyal, and yes, I’m disabled. I have the limits my own body and my health puts on me, and I have the bullshit limits the world puts on me. But you know what? Striking the balance is fine. Shouting out “NO” to the limits that everyone else tries to put on me, tries to pin me down with, is perfectly okay and perfectly acceptable. Because I, and only I, get to choose my limits. I get to choose what I can and cannot do. I get to decide. And that alone is a huge step. That alone is a big deal.