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It’s been 11 months. 

It’s been 11 months since Beth died. 
I just want time to stop. 

I just want the grief to stop. 

I just want the emotions to stop. 

I don’t want it to be one year. 

It’s already been longer that I haven’t talked to her. 

I want to talk to her. 

So badly. 

I want the tears to stop. 

The pain. 

How is this fair?

What happened? 

Why did she have to die?

Why?

I feel so lost without her. 

It hurts. It really really hurts. 

Part of the reason my middle name is now Isabelle is because Isabelle is related to the name Elizabeth. And it’s a way to carry her with me. Forever. 

But why. 

Why did she die. 

I still cry when I see cinnamon or pumpkin spice flavored things. 

I still cry when I see a meme I’d share. 

I still cry when I’m in the hospital alone and my texting buddy is gone. 

I still cry. 

I’m still lonely. 

And I miss her. 

I don’t want it to be my birthday this year. I don’t want to celebrate. I just want to skip from the 23rd to the 27th.  

Because it means two days later will be the one year mark.

And I’m just not ready. 

I close my eyes, and I see your face. If home’s where my heart is, then I’m out of place. 

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Can you imagine?

So many people have told me how lucky I am.

Can you imagine it?

Imagine having all the free time you could dream of. It sounds like a dream come true, doesn’t it? Can you imagine?

But at the same time you’re always tired and never sleepy. You’re always exhausted and you’re either sleeping forever, or incapable of sleeping.

Can you imagine?

You have all that free time and the world is your oyster… but yet you’re in too much pain to pick up the TV remote to turn on Netflix.

Can you imagine?

I have NF1

Today is NF Awareness Day.

Even the city of Minneapolis  has decreed it so.

Can you imagine?

Imagine being fucking terrified every time you go into the simplest doctor’s appointment, because you never know if another surgery is on the table. Imagine your blood running cold the moment your body has decided that one again, you’re atypical and body, you REALLY should read the textbook because you’re doing the things you shouldn’t do and I don’t WANT A TUMOR, dammit!

Imagine it.

Imagine having no cure. No treatment. Just random drugs or surgeries or therapies thrown at your body like a game of Russian roulette. If you’re lucky, it works like a charm. If you’re me, it works with side effects.

Can you imagine?

Imagine over a dozen medications running through your veins to keep you alive. Not pain free – no. You are in pain every day of your life. You don’t know what it’s like to not have pain. Imagine even more comorbid disorders.  Just imagine it.

Can you?

Am I so lucky now?

Am I so blessed to have all these free time when it’s because of my disability?

Imagine being called amazing. Inspirational. Incredible. For doing things that non disabled people do. Can you imagine it? Can you imagine crying yourself to sleep at night, because you’re TERRIFIED of your next visit to the doctor? Can you imagine dreading getting out of bed, because you’ve finally gotten somewhat comfortable but you know the slightest movement will bring all your pain back?

Can you imagine doctors not knowing what the hell you’re talking about, despite the fact your genes are one in every 3000 births? NF is more prevalent than  cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s Disease combined.

Am I so lucky now?

I would be honored if you made a donation in my name to help fund NF research. Every dollar is matched during NF Awareness Month

If you are an Aussie, you can donate here. If you are in the UK, you can donate here

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The day it all changed

There’s no cutesy graphic to go with this post. No Pinterest-worthy picture. My words are messy and garbled. I’m far from eloquent – not like I’m always an award winning writer. But lately, I’ve been reflecting on the day it all changed. The day everything I knew fell out from under me. The day where my hopes and dreams were shattered.

May 9th, 2011. Almost five years ago. My first back surgery. July 9th, 2013. The second back surgery due to complications from the first. But the May 9th surgery shattered everything. It changed. My life changed. My world was turned upside down. 

My life became more pain. More questions. Less answers. More specialists. I have an impressive scar down my back and a straighter spine but at what cost? 

Three years later. May 9, 2014. It was supposed to be the best day of my life. My college gradatuon. Didn’t happen. Due to that back surgery. 

And now. Two years later. 

I am broken. 

I am hopeless. 

I have no college degree despite spending six years in undergrad. I am drowning in debt. I’m trying to get them forgiven but loan people are butthippos. 

I am trying to find a purpose and meaning in my life. Is it my blog? Is it activism? Is it being an advocate? Is it anime conventions? 

I was a semester and a half away. 

I graduated high school ten years ago as of June 2nd, 2016. I expected to be drowning in debt but in a Ph.D. program. Nope. 

Instead here I am. Ten years. Five years. Two years later. Trying to aimlessly find a meaning. 

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What’s on my mind?

Facebook asks me what’s on my mind. It’s kinda creepy, really. It also always thinks I’m at target or out getting waffle fries. Which neither are inaccurate if we are being totally truthful. 

But the problem is? I don’t know how to say what’s on my mind. 

But Nora!

You’re such an eloquent writer. But Nora! Just type or say the thing. 

That’s the problem. 

I can’t. 

You see, the word are trapped. The emotions are trapped. The feelings are trapped. 

It’s like alphabet soup and just a bunch of letters swirling around. Sometimes I can scoop out a random word but it isn’t very helpful or relevant. 

I have so many secrets. Oh, everyone has secrets

But this is stuff I’ve not told everyone. 

Stuff I’ve not even dared write out. Because I’m scared to be faced with it. 

It can’t be that bad. 

Well no, but it’s not that good either. 

It’s trapped. I want to speak the words. To type the words. To free myself from the words. But I don’t know how. I’m stuck. I’m trapped. And I’m scared. 

I don’t like feeling like this. The words. The thoughts. The feelings are terrifying. I want it out. I so badly want to be free of this hell I’ve been trapped in for decades. 

But yet. 

I smile. 

I laugh. 

I joke. 

I act like the good person I know I have to be. 

I have been told how smart and capable and resilient I am. 

And so I stay trapped in my head. 

Locked in my own body. 

And it’s terrifying. 

I mean. 

I’ve written out what happened before. My childhood. My past. Some of it. 

But there’s so much more.

A few eyes have seen it. 

But not many. 

And I’m scared. 

I’m terrified.

I have so many thoughts that are still trapped. So much stuff I haven’t dealt with. 

So many nightmares. So many flashbacks. 

And I want to move forward. 

I want things to change. 

But they can’t. 

Because the words are trapped and I can’t pull them out. 

I’m just not smart enough to fix this one.  

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Ten years ago…

Ten years ago, I was a senior in high school. I had so many hopes and dreams. I had plans. I had ambitions. I had been dealt a pretty crappy hand in life, but I was determined to make the best of it. I was going to graduate, and I was going to kick ass and take names. I was going to get a job. I knew what I wanted to do in my life. I was young. I was naive. I had no idea what was in store. There was so much I didn’t know. But I knew I wouldn’t let my illness hold me back.

Image is one of my senior pictures: A brunette female with wavy hair. She is wearing a blue sweater and khakis. She is sitting behind the numbers 06.

Image is one of my senior pictures: A brunette female with wavy hair. She is wearing a blue sweater and khakis. She is sitting behind the numbers 06.

I was confident, and scared, all at once. I was graduating against seemingly impossible odds. I was told how amazing, inspiring, faithful I was while inside, I was falling apart. I was told I had a promising future – I was bright. I was smart. I was bubbly and passionate. Against a world that seemed determined to pull me down, I would prevail.

But that summer, my grandfather died. That fall, I enrolled in college for the first time. Both my physical health and my mental health completely fell apart and I spun so out of control I was asked to leave the college. That was the first time I dropped out of school, and it wouldn’t be the last.

Later on that year, I was admitted to the psych ward for six weeks, going into the beginning of 2007. And then I went to a group home. It was hell. Everything I had hoped for. Everything I dreamed. Gone.

 

Five years ago, I was transferring colleges. I had dropped out one other time and had finally completed classes. However, the college I was at wasn’t meeting my needs. I was preparing for back surgery before transferring colleges. I wasn’t the person I thought I would be. My career path had changed. But that’s okay – part of life is growth, right?

Image is a brunette female holding chopsticks.

Image is a brunette female holding chopsticks.

But that surgery didn’t go as anyone planned. I wound up with more doctors, more specialists, more pain, and eventually another surgery. I was still hopeful. I was still, as I like to say, kicking ass and taking names. I am stubborn and I fight like hell for what I want. This is both a blessing and a curse. My doctors would literally have to threaten me with inpatient treatment if I didn’t skip class because I was so determined to do well. For so long of my life, I had put worth in grades and doing well in school and dammit, this wasn’t something they could take away from me.

But it all came screeching to a halt. Despite modified course loads, despite every reasonable accommodation possible, I dropped out of college yet again. For seemingly the last time. My hope was gone. I was a semester and a half away from graduation. I was so close I could taste it. I could imagine the feel of that diploma in my hand. It was what I had worked toward for so many years… and it was gone.

That brings us to today. I’m sitting at Starbucks sipping an iced Americano. “You Can’t Stop The Beat” from Hairspray is playing in my earbuds. I never imagined that my life at 28 would involve being an activist and an advocate. I never imagined I would find things I’m passionate about. I never imagined that I would still not have that degree ten years ago. I never imagined that my medicine list would be so extensive that I would have a nurse come fill my med dispenser every week because I could not keep up.

Image is a brunette female. She is wearing a green sweater, a blue t-shirt, a blue and green tutu, black tights, and silver shoes.

Image is a brunette female. She is wearing a green sweater, a blue t-shirt, a blue and green tutu, black tights, and silver shoes.

But I am living. I am thriving.  I have a life that I could never imagine. Because of my autism and disabilities, I have an amazing circle of friends I would never have otherwise. Because I am stubborn, I found something else to throw my passions and love into.

Ten years ago, I was eighteen years old and frankly, didn’t know anything about life. I thought I knew it all and was likely a cocky asshole. I knew I would get that degree. I knew I would do well in college in spite of my disabilities, and I cringe at that language now. I knew that my life would turn out just the way I want it.

As the John Lennon lyric states “Life is what happens to you when you’re busy making other plans”. Everything changed. And it is all a beautiful, messy mess. It’s all a part of who I became. And I love it. Back then, I was Angelique – young and naive. But now I am Annora. I am strong. I still have  a future ahead of me. I may not be working in the way I thought I was and I may not be making a difference in the world like I thought I would be – but I am slowly changing my own world.

I am living. I am thriving. I have depression. I am autistic. I have OCD. I had PTSD. I have a list of medical disorder’s that is so long that I have to carry a list. I take so many medications that pulse through my body, keeping me alive. I never imagined this would be my life. But you know what? Because of it, I am thriving. Because of it, I have a great life. Because I am autistic and disabled,  I have a life that is worth living.

My life is beautiful.

My life is mine. It may not be what I thought it was and even one year from now, it may look vastly different. I’ll look back on this and laugh. But this is what it is right now and it’s good enough.

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I am Autistic

When the words are spinning and everything is blurry and fuzzy, I am autistic.

When every sound hurts my ears and pierces my skin, I am autistic.

When I melt down, I am autistic.

When I am stimming, I am autistic.

When I am echolalic, I am autistic.

When I lose my speech, I am autistic.

 

When  I make phone calls, I am autistic.

When I am verbal, I am autistic.

When I am passing, I am autistic.

When I manage to do tasks, I am autistic.

When I self advocate, I am autistic.

When I DO ALL THE THINGS! I am autistic.

 

This is why functioning labels are useless. This is why there’s no such thing as mild or severe autism. This is why trying to fit me into your neat little boxes doesn’t work well.

I am autistic. Always.

When I appear autistic.

When I do not appear autistic.

I am autistic…no matter what.

I am autistic-2

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How Pikachu Helped Me Accept Being Autistic

This may come as a shock (see what I did there?) to anyone who knows me, but I absolutely love Pokemon. I have multiple games for multiple consoles. I go to GameStop (or I did, before their partnership with autism speaks. I’m hoping they listen to me and sever ties. Anyway) for promotions and events. I have the original and Johto pokeraps memorized. I have over a dozen pokemon t-shirts. You see, I love Pokemon and ESPECIALLY Pikachu. So yes, Pokemon is a big and important part of my life.

 

Image is of a brunette female with short hair and red glasses. She is wearing a Pikachu hat, a pink Pikachu t-shirt, and has two stuffed Pikachus in front of her.

Image is of a brunette female with short hair and red glasses. She is wearing a Pikachu hat, a pink Pikachu t-shirt, and has two stuffed Pikachus in front of her.

Pikachu also helped me accept and define being autistic. You see, in the first episode of the first season of the anime, Ash is given a Pokemon by Professor Oak. It isn’t the Pokemon he wanted and was, well, less than desirable. In many ways, this is how parents feel when they have a disabled child. That their child is broken. That their child is less than desirable. That they didn’t get what they signed up for.

But do you know what happened when Ash found the Pokemon that was given to him? He accepted him. He took him as he was. He decided that “This is the Pokemon I was given, and now we’re going to be partners and take on the world.”

Pokemon are supposed to go in their Pokeballs. It’s just how it works. Don’t ask me why, I didn’t write the storyline. But Pikachu is stubborn and Pikachu refused. So Ash finally accepted Pikachu as he was, and he let Pikachu walk by his side. They became friends. And twenty years later, they still are. Despite the fact that Ash still hasn’t caught all the pokemon and STILL isn’t a Pokemon master… but that’s another story, I guess.

A ten year old boy was able to accept his Pikachu that didn’t fit the conventional mold. A ten year old boy realized that Pikachu had very real access needs – he didn’t like being confined to a ball, he was stubborn at times, and he wasn’t always the best behaved Pokemon. But Pikachu did what Pikachu wants.

I am autistic. I also have an alphabet soup of brain cooties. I don’t perceive the world like a neurotypical person does. In a world that was created for people that are, well, quite frankly, not me, I struggle. I struggle to fit in and I struggle to find my groove. I live in a world where I function differently just because of how my brain is wired. It doesn’t mean there is anything wrong with me. Some of my brain cooties are because sucky things that shouldn’t have happened happened, and my brain did what it could to protect itself at the time. Some are because of genetics. And some are just because my brain does what it wants, and not what I necessarily want it to do.

But like Pikachu, I wasn’t anyone’s first choice. Like Pikachu, I was unconventional.  I had my own way of doing things and no matter how hard you tried to force me, I couldn’t do it any other way. But Pikachu taught me that that’s okay. That I can still make a large group of friends. That I can still find someone who will stand at my side. That I can still have people who will be my companions.

And that is why Pokemon isn’t merely a kid’s show. Pikachu helped me accept myself.

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To the person who once lit it up blue 

  
(Image is a shattered blue light bulb with the text “don’t light it up blue. Listen to autistics.”)

To the person who once lit it up blue,

April 2nd was autism awareness day, or something like that. At one point in time, your attitude toward it wasn’t what it is today. 

At one point in time, you believed Autism Speaks was doing good. You may have *gulp* donated to them or you may have shared their propaganda. You may have not realized that their idea of a cure of eugenics and ensuring that we don’t exist. 

You didn’t know better. You didn’t realize that they don’t help us. You didn’t realize they gaslight us. They abuse is. They don’t listen to autistic adults. You didn’t know. 

You may be autistic yourself. You may be a parent of an an autistic child. Or you may be neurotypical. You may have thought tou were helping a good cause. 

You weren’t. 

You didn’t realize you were justifying our abuse. Our murder. Our mistreatment. You didn’t realize that instead of helping us, you were contributing to the problem. 

But guess what?

You learned. You know better. Screwing up isn’t the problem. It’s what you do as a result. You now know that Autism Speaks exists to actively harm autistics. You now know that LIUB is nothing more than an ad campaign for Autism Speaks – did you know that blue has not always been the colour for autism and it’s been the colour for merely barely a decade? Did you know that it was chosen to erase females? Well, now you do. 

You learned, my friend. You grew. You changed. You thought you were doing something good but you learned you were hurting us. And once you learned, you changed. 

That’s what mattered. You changed. You’re now moving toward acceptance. Toward redinstead. You know better now! 

And what matters now is you educate others. You educate yourself. You educate your children. You move forward toward a better future, instead of dwelling on the past mistakes. 

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Walking in our shoes

Image: two pairs of feet and two pairs of shoes. Both are rainbowy and fun.

Image: two pairs of feet and two pairs of shoes. Both are rainbowy and fun.

For many years, this has been one of my favorite pictures. It’s my feet and my best friends feet. It’s been both our profile photos and at least my cover photo before and will be incorporated into my memoir. It’s simple and there’s nothing fancy about it. The framing isn’t great and the colours aren’t ideal. But I love it.

I love it because it tells a story.

It tells a story of two best friends – both who have walked many places. Some easy, some difficult, but we’ve both walked a road.

It tells the story of two teenagers who met online over half their lifetime ago and their friendship blossomed into a real life friendship. Our lives are different in many ways, but the same in many ways.

We walk in our shoes. And sometimes, we walk in each other shoes, or at least we did when we lived together.

Our shoes have seen a lot. Our shoes tell a story.

One of Autistic acceptance.

One of mental health.

One of being neurodiverse.

These are our shoes.

And this is our story.

Today, we are encouraged to light it up blue. Today, we are told that being autistic is a burden. Today, we are surrounded by puzzle pieces and told we are merely missing pieces. That we are a puzzle to be solved. Today, we are told our hard our lives are.

We are told that people higher functioning are the “lucky ones” and people lower functioning are denied agency. Even though I may be both be so-called high and low functioning  on the same day – I can make a phone call to my doctor, but I can’t use the stove without serious risk of injury. I can take care of my cat just fine, but taking care of myself is another story.

It’s time to shut up about walking in the caregivers shoes.

It’s time to care about our shoes, for a change.

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Ah, labels, again

Image is of a background with clouds. Text reads "I am not functioning. I am living."

Image is of a background with clouds. Text reads “I am not functioning. I am living.”

 

Today and yesterday I was “high functioning.”

I made phone calls. Scary phone calls – to the bank, to my student loan company. I went to Walmart. I’m high functioning, you see. I went to the Sprint store because my cell phone wouldn’t activate and you know, it’s kind of hard to make phone calls without a functional phone. You would have no idea how hard I was working at being high functioning and passing in a world that’s equipped to speak out against me.

I see so many things on the internet about being high functioning. Functioning labels are bullshit and I think they need to be eradicated. They don’t help me define myself, but rather help others define me. They don’t help me get services or agency, rather they deny me service and agency.

You know how I mentioned I was “high functioning”?

Later that same day, my PCA had to make me food for the weekend to freeze so I can actually eat. Because I cannot use a stove by myself. That’s right, the same “high functioning” person cannot use a stove without serious risk of injury to myself or my apartment. I’ve melted a blender and set fires. I wore children’s shoes with velcro because I couldn’t tie my shoes that day. I played with the rubber coil bracelet I always wear on my right risk.

And today, after more phone calls, I am now non verbal. Talking isn’t possible. I can type and communicate, but my “signs” are more severe. The truth is autism is exhausting.

The world calls me high functioning. Parents say “you are not like my child” even though I was once your child and your child will someday be me. I have very real struggles and very real issues. I don’t hate being autistic. I don’t think autism is evil. But it doesn’t change the fact they are very real, and very annoying struggles. It doesn’t change the fact that I need supervision – I will literally walk into things or people unless I have someone telling me “hey, watch out!”. I can’t use a stove. I can’t do many executive function tasks.

I would love to be able to eat whatever food I want. But I can’t. I would love to be able to talk whenever I wanted about what I wanted but the words literally become stuck inside me and there’s no way to pick them out. We are like your child. We have experienced things your child has. But when we try to speak out, when we try to say anything, you shut us down. And you are helping your children internalize the message that their autism is something to be ashamed of. That they are lower functioning and that their lives aren’t worth living. That they are burdens.

What I need isn’t your labels. Your labels help you define me, not help me define myself. What I need isn’t for you to tell me what my functioning is. What I need for you  is to listen when I talk to you. What I need for you is to accept me. I don’t need your awareness and I don’t need your labels. All your labels do is dehumanize me. All your labels do is tell me how you expect me to live up and the standards you keep me to. Despite the fact that countless other autistic advocates, dozens upon dozens of activists, and myself are telling you how harmful these labels are, you insist on using them.

Please stop.

Today and yesterday I was high functioning.

Right now, I am low functioning.

But the truth is, I am neither and that’s acceptable. I am living.