0

sometimes i’m quiet about things that matter

When I first became advocate!Nora, when I first became an attack badger…I fully threw myself into it. I lapped up every cause I cared about. I defended things to the death. I mean, you can kind of envision me sitting in front of my laptop/phone/tablet being all “FOR NARNIA! AND FOR ASLAN!” right? Or… you know, whatever my cause is. But you get the point. At the edge of my seat .Ready to fight. Ready to attack. Ready to defend.

You know the old song? Lean on me, when you’re not strong. I’ll be your friend, I’ll help you carry on.  For so long, I’ve been the person to lean on. For so longer, I’ve been the person ready to defend, to speak out, to pounce, to say the things that matter. For so long, I’ve been so ready to be at fight me! mode that I forget to do things that are also important.

And so, sometimes I’m quiet about things that matter. Right now, we have a commander in chief who, well, many have very valid concerns about, to put it lightly. Concerns that could, and likely will, affect me and my livelihood. About people I love deeply and would truly do anything for (the “would do anything for” list is very small, though the “I will fight for you” list is hella long). And I’ve kept fairly quiet about it on Facebook.

I feel like people think I’m privileged because I haven’t been speaking out like they have. I’m not – I’m autistic, I’m disabled, I’m low income. There’s so much that matters. But like anyone, I burn out sometimes. And right now, I am quickly spiraling out of control.

Many of you know that I cling deeply to being a Hufflepuff and consider it an essential part of my identify. Right now, I am a burned Hufflepuff. I pull away. I retreat. I am burned out. Because right now, being quiet is an important part of self care. Right now, when I fully emerge myself in politics and whatnot, I make myself physically ill. And my already fragile health cannot handle that. It doesn’t mean I don’t care. It doesn’t mean I’m not affected. It means I’ve learned the lesson of saying no and I’ve learned the lesson of when to speak. You know, like the Bible verse. A time to speak, a time to be silent.

It doesn’t mean I will be quiet forever. It doesn’t mean I no longer care about politics, the world, my friends, or being an advocate. It means that right now, I have to be silent about things that matter. It means that right now, the right step for me is taking care of myself and those closest to me. One day, I will be an outspoken advocate again. One day, I will say all the things again. But that day is not today, and today I am taking care of myself.

0

Day of Acceptance 2017

I feel like there’s something telling to be said about the fact it’s the disability day of acceptance And the fact I’m having one of my GI flares. I’m sure I could write some profound analogy…but that would involve my stomach not staging a mutiny. But that’s neither here nor there and I really don’t want to write about the president today – my already unstable health cannot take it.

But today is the disability day of acceptance. For those new to my blog or my life (hi new friend!), I am multiply disabled. I am autistic. I am physically disabled. I have an alphabet soup of brain cooties. I don’t even want to start counting my physical ailments but there are a crapton.

I was born disabled, vs having acquired disability. I don’t know what it’s like to be able-bodied and I never will. I have been both accused of minimizing the impact my disability has and of using my disability as an excuse or exaggerating it. I’ve been told that I cannot do things because I’m disabled and that I should suck it up, buttercup.

I’ve been told I am literally incapable of holding a job and this is true. I do volunteer stuff and my advocacy stuff but I cannot hold a job. My disability does not allow that. I’m a college drop out. I will never be capable of going back to get my degree. I will never be capable of having a job. These are things that society says I have to do, to be a good person. To be a valuable person. To be worthwhile in society. So many people place my worth on what I cannot do, vs the things I can do.

Part of growing has been accepting my disability. I dropped out of college three years ago. I should have graduated from college in December of 2014. I was literally a semester and a half away from graduating. But I couldn’t, because I’m disabled.

Disabled children become disabled adults. And accepting this as a reality is hard. I wasn’t ever expected to live on my own, but I did. Even though I ultimately wound up moving in with friends because living alone did not work for me. For years, I tried to deny the fact I was disabled. You’re talking to the person that literally had to be threatened with putting in the hospital in order to convince her to stay home from college classes. I was very much of the “push through, it isn’t that bad, it’s all in your head” mindset. This actually made my disability worse – this made my health worse. Because I couldn’t do the thing even though I tried to insist I could.

Today is the disability day of acceptance. And I’m here to say my life is worth living. Despite people thinking budget cuts should be made to avoid that. Despite people saying that I’d be better off dead than disabled. Despite people saying that I don’t deserve health insurance. I’ve accepted my disability and it’s time for you to accept it as well.

0

Adventures of Anxiety!Brain

I have anxiety. To people who don’t know me well and haven’t seen me in panic state, it may not be obvious. I’ve learned how to pass well. I’ve learned how to hide it. Cope? That’s laughable. I still don’t know how to cope and as a result…

To the outside eye, I look lazy. I look like I just don’t do the thing. I look like I’m just putting off sending the email or making the phone call. I look like I just don’t care about my diet when I rely on easy-to-make stuff instead of making actual food. I look like, for all intents and purposes, I’m just someone who doesn’t give a crap about many things.

For the sending the email or making the call thing, I have to write a script. I have to come up with possible replies. Calls are worse because I have to try and think of what their possible response will be. I have to come up with a list of possible outcomes. Emails are nice because if my preferred time to send them is at one forty two AM and the rest of the world is asleep, there’s nothing stopping me with sending it when it’s best. But then I’m plagued with saying the wrong thing. Wondering if I made a grammar error that made me sound foolish. There are so many outcomes. And what if I typed their email wrong and instead of emailing my case worker, I email a random dude with the same name in Ecuador!?

So instead, I just don’t do it. I pretend it doesn’t exist. I act like it’s no big deal and just brush it off. To the outside eye? To the random person who just seems me in a Nora-puddle on my bed with two fuzzy cats, a large mug of tea, munching potato chips, while browsing Tumblr on my phone? I look like someone who is merely unmotivated or lazy but in reality it’s so much more than that. I have so much motivation locked up inside me. I just don’t know how to pull it out.

Likewise, I make easy foods. I have sensory issues and allergies. I make foods I like. I find comfort in my routine and what I know. I don’t tend to branch out often. This means that current, I exist on pasta, chicken nuggets, potato chips, and cheese. There’s a few other things mixed in but for the most part it’s pretty simple and I don’t want to have to make decisions when I already know what I like.

The biggest thing, however, I wish people understood about anxiety!brain Nora is that I don’t cope well with change and pressure. I like things to stay the way I know them. I like things to be the way they’ve always been. I’ve had the same Tumblr layout for basically the entire time I’ve had a Tumblr. I play the same video games over and over despite having a huge back log.  I have a huge pile of books to read, but I go back to my old favorites. I have thousands upon thousands of songs but I listen to the same few dozen over and over. I like my life to be the way it’s always been.

I recently moved. It wasn’t just a move from point a to point b, but it was a move to a new state. Even though I’m literally just a few minutes away from my old state, I had to change everything. I moved away from my friends (though toward other friends – both new and old! YAY!). I started over. And it was very much needed – my physical and mental health is the best it’s been in years. But changes happen. And I struggle to keep coasting and not to just shut down.

When I’m pressured, when things have been set and I’m asked to change what I thought I had stabilized, I panic. My brain goes into overdrive. It feels like I spiral out of control. I like things to be the way I know them. I don’t like things just popped on me at random. Even surprises, the good kind, can be stressful. Which is why change is bad. Which is why I don’t like things not being what I expect. Which is why I cling to my routine. Because otherwise, I don’t know how to cope.

0

Respect the Stim

I’m a lifelong fidgeter. I don’t sit still well. I bounce in my seat at times. I rock. I fiddle with a Tangle Jr or my fidget bracelet or my Hufflepuff necklace. I flap my hands. Sitting still is stressful.  Playing with the nearest gadget or toy helps ground and stabilize me.

For me, stimming (which is what we call fidgeting to help calm and ground ourselves or to make us happy) is a way of life. It’s often like the first sunshine after a bitterly cold winter – warmth and comfort and happiness. It’s like the first sip of a perfectly brewed mug of my favorite tea. It’s the feeling of my soft, fluffy cat curled up in my life. It’s like a big bear hug from my favorite person in the universe.

It isn’t meant to annoy you. I can’t just stop because you don’t like it. It’s as natural as breathing, as natural as the in and out, in and out rhythm of air. It doesn’t hurt you, does it? Maybe when you need to calm down, you take deep breathes. You hum or whistle. Maybe you tap your foot. Maybe you visualize things. This is my method. This is my way.

Stimming is my very way of life. It’s the warmth of a fireplace. It’s the comfort of a book I’ve read a thousand times. It’s what makes me feel at peace in a world I often don’t understand. Respect the stim.

0

Life as an autistic adult

If you haven’t figured it out yet, hi, I’m Nora and I’m autistic. Breaking news has just reached the Caribou Coffee I’m currently plopped down at and I’m here to announce that autistic children become autistic adults! I KNOW. Novel concept, right? It’s AMAZING! Ahem. Sorry. I’ll lay off the sarcasm. Maybe. 😉

I was once an autistic child. I am now an autistic adult. My needs aren’t the same as they were as a child. But that’s okay. I can do things as an adult I couldn’t safely do when I was younger. I still do some of my stims and fidgeting habits. But I’ve grown. I’ve become an adult. And while I don’t know what it’s like to be a parent of an autistic child, I know what it’s like to be an autistic child.

When I make suggestions to parents, I don’t do it to judge them. I don’t do it to be a butthead. It’s because I was an autistic child once, too. I do it because I hope to help. I speak out because I care and think people will listen. I don’t waste my energy and time on people I don’t think will listen or whom I don’t think I can help.

I speak out because I care. I speak out because I was a child once. We’ve all been children once. Please don’t silence us. Please don’t tell us our stories don’t matter. That you only want to hear from parents of autistic children. We want to help. We want to make things better than what we went through. Give us a chance. And hear our voices.

0

I’m more than the labels I don’t choose

I am more than the labels I don’t choose. There are some labels I’m fine with – Hufflepuff, asexual, autistic. I’m fine with this labels. They help me define who I am. They give me concrete terms to tell others about how I am. Terms to help me find people who are safe for me. These labels are like a security blanket, almost. They help me find what I need. Who I need. Get what I need. They help me explain things. For example, I can easily say “because I have anxiety, phone calls are difficult” and “because I’m autistic, eye contact is literally painful sometimes.” I like those labels.

There are also labels I, well, don’t like. I don’t like the labels society puts on me. High functioning. Low functioning (I guess there’s no medium functioning?). I’m not a steak,  y’all. I’m not either rare or well done. I’m also not hot sauce. Why do I have to be mild or  HOT HOT HOT? In many ways, I am on the lower end of so-called functioning. My IQ is crap because I can’t test well. I have dysgraphia and dyscalculia.

I don’t like being called handicapped or a person with a disability. I am disabled. I choose ID first language because while they don’t define me, they are so intertwined into who I am that without them, I would be a totally different person. I’m not a person apart from them. I’m a person who IS them.

When other people try to label me, it feels like they’re trying to define me. It feels like they are trying to make me fit into their cookie-cutter mold. It feels like they are trying to rip away my rights, my dignity, and my agency. It feels like they’re saying what I choose doesn’t matter, but their choice does. While this may not (always, but it sometimes is) their intent, it’s the way it feels to me. I don’t like being defined by other people that aren’t my friends.

Let me choose my own labels. When I tell you I don’t like them and to please don’t use them, please respect me enough as a human being to honor my wishes. Please respect me enough to use the labels I choose, not the ones you choose.

0

But Borrowed Time

Handwritten notes that now bring a tear,
Bittersweet smiles amidst Christmas cheer
Inside jokes that bring mist to my eye,
If only I’d remembered,
Those moments were but borrowed time

Firsts in my life becomes firsts without you,
Left all alone when faced with something new
Smiling and laughing, to merely hide the pain
Wishing I could talk with you just once again
If only I’d remembered,
Our moments were but borrowed time

As I learn to grow and walk on alone,
There are so many things I just wish I had known
More “I love yous” and another late night chat,
In the flash of a second, it changed just like that
If only I’d remembered,
That life is but just borrowed time.

0

It’s time to listen: A Megapost

Sit down. It’s time to listen.

It’s time for me to do the talking.

I’m done. I’m tired. I’m worn out. I’m exhausted, physically and emotionally.

It’s time for you to listen.

I need you to listen. This is a megapost of important links y’all need to read. So get some coffee (or tea, or hot cocoa, a beer, or whatever the heck your drink is), read the links, and listen to us. Please read them. Please listen to us. I’m tired. I’m worn out. And I can’t do it anymore.

Autism Speaks sucks

I’m not a puzzle piece

Please use ID first language 

And I hate functioning labels

I’m tired of talking about ableism

The cure to autism is eugenics 

And The Mighty mightily sucks

And finally, I’m fed up with your awareness.

Call me bitter. Call me cynical. But the things have been said. Over. And over. And over. Right now, there’s nothing new I can say.

So can you listen?

0

silence in a shattered world

It was the day after the election. I had my music on shuffle, as you do. And this came on.

Can you hear the voice of the children?
Softly pleading for silence in a shattered world?
Angry guns preach a gospel full of hate,
Blood of the innocent on their hands

Crying softly, help me
To feel the sun again upon my face,
For when darkness clears I know you’re near,
Bringing peace again

A little too apt.

I’m scared. I want to fix all the things. I want to make things better for my friends. Many of my friends are minorities. Many of my friends are minorities. And I want to help them. I want to fix their fears. I want to make the thing RIGHT again.

And I can’t. I sit here helpless. I sit here with tears.

I wonder when I’ll feel the light again.

The warmth of the sun as I’m sitting here shivering this cold Minnesota morning. I wonder when I’ll feel hope. When I’ll be able to make things right again.

And the not knowing is so terrifying.

0

What if I stumble, what if I fall?

Father please forgive me
For I cannot compose
The fear that lives within me
Or the rate at which it grows

If struggle has a purpose
On the narrow road you’ve carved
Why do I dread my trespasses
Will leave a deadly scar

Do they see the fear in my eyes?
Are they so revealing?
This time I cannot disguise
All the doubt I’m feeling

I am scared. There is no way around it. I’ve spent my whole life  scared, really. I’ve been disabled since birth, though the list of diagnosis didn’t begin until I was three. When I was four and I became a childhood cancer survivor, I essentially became untouchable by insurance.  As I got older, the list grew and grew. We expected me to grow out of my disabilities, Instead, I grew into them.

And I’m scared. I’m so very, very scared. I’m outright terrified. I need thousands of dollars of medication a month to live. Thousands. Some of my meds do not exist in generics. I require numerous specialists. Health care reform is a very scary, serious thing in my world. I’m moving in under a week and I’m scared as to just transferring my Medicaid over state lines.

I’m scared my Medicare, Medicaid, and SSI will be slashed. I’m scared I won’t be able to get the meds I need to live. I’m scared I won’t be able to see my specialists. Imagine solely relying on government run programs to live. Imagine that private insurance isn’t an option for you – yes, thanks to the ACA I can’t be turned away due to my medical history, but I can’t afford private insurance and there isn’t a plan that would meet my needs.

I’m letting my fear show. I’m letting my doubt show. And let me. It’s hard for me to be vulnerable. It’s hard for me to be scared. Me wondering where this country is going to go isn’t me being a whiny crybaby, someone who’s feeding into hysteria, or any of that jazz. I rely on welfare to live. I literally would be dead without it. My lifetime health bill is in the several million mark. Do I not deserve to live? Do I not deserve to thrive? Do I not deserve a chance at life?

I  can’t hide my fears. I have to be open. President elect Trump, I need you to listen for once. I need you to know that disabled people like me deserve to live. I know I don’t have a job and you likely look down on me. But you know what I do have? I have a witty sense of humor. I’m loyal. I’m compassionate. I’m passionate about things. I’m fighting like hell against a world determined to pull me down. I’m an advocate. Won’t you give me – give us – a chance? We didn’t ask for this life but we’re living it.