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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.

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I’m A Bad Crip

I was born disabled. I don’t know what it’s like to not be disabled. Every second of my life has been “Oh gods, Nora, you’re SO INSPIRING!”

I have nearly died. I don’t know what it’s like to be healthy. And my entire life I have been told I’m lucky. I’m blessed. I’m special.

I’ve been told I’m inspiring. That it’s amazing I graduated high school in the top portion of my class. I’ve been told what an incredible person I am merely for existing.

I am a bad crip.

I think this is bullshit.

I am a bad crip.

I’m not inspirational just for velcroing my shoes or getting a freaking soda from the store.

I am a bad crip.

I hate being told I’m amazing. I’m inspiring. I’m incredible. Don’t be inspired because I’m disabled. Be inspired because I’m a kickass Hufflepuff. Be inspired because I am loyal to a fault. Be inspired because I can still rap all the words to Jesus Freak, thank you very much. Be inspired because I know all the words to One Week by Barenaked Ladies. That my brain is a useless trap of Disney trivia and 90s Christian trivia.

I am a bad crip.

I don’t accept bullcrap excuses for ableism. I don’t let people push me around. When my PCA was treating me like shit and emotionally abusing me, I spoke out instead of just taking it. I document the hell-wringer the company puts me through, instead of doing what the world wants me to do: sitting down and shutting up.

I am a bad crip.

I’m snarky and sarcastic. I don’t take no for an answer. I push back. I don’t let the world walk over me. When I was told that I looked too good to be depressed and I just thought I was depressed, I ditched the doctor instead of believing the bullshit.

I am a bad crip.

And I’m proud of it.

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Accepting Nora-mal

I have both acquired and congenital disability. That means that some of my disabilities I developed as I got older – like Cyclic Vomiting Syndrome and POTS. Others I was born with, like autism and NF. I’m also a millennial. I’m from the age of being told I can do anything I set my mind to. That I have to go to college and get my degree. I was literally told that because I was smart (despite autism, dysgraphia, and dyscalucia), I could do anything. Because I graduated with honors I was expected to do well in college. I ultimately dropped out due to my health, leaving behind a staggering $100K student loan debt.

At various times in my life, I’ve been accused of both minimizing and over-reporting my disability. I’ve been told that I can do anything and that I need to set limits for myself. I’ve been told that the only disability in life is a bad attitude (which you can read about why that’s bullshit here) and that I’m not disabled, I’m “differently abled” (which guess what? THAT’S BULLSHIT!). I’ve also been told, to my face, that because I’m disabled I should aim to be people’s inspiration. That’s inspiration porn, and, you guessed it, BULLSHIT.

Here’s the thing, folks. There’s nothing wrong with accepting I have limits. There’s nothing wrong with aspiring to do things. There’s nothing wrong with just being. It’s okay to try, it’s okay to fail, and it’s okay not to try. I have accepted that I will never have a college degree. No, online college is not an option. No, community college is not in the cards. No, a different school will not be a better fit.

Nora-mal is who I am. Not normal. Not different. I just am. And there’s nothing wrong with just being. There’s nothing wrong with not getting a degree. This is Nora-mal. This is what’s right for me. What’s right for me may not be right for you. You may choose to get a degree. You may not. You may think I’m capable of getting a degree. I’m not. I’m not capable of a degree or gainful employment. There’s nothing wrong with that because that’s just  the way things are.

For me, accepting that I’m disabled has made a difference in my mental health. Accepting that I have limits and that I cannot do all the things I was told I could do. That, for me, is a victory.

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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 I Want You To Know

What I want, no, need you to know about how my brain works.

What you should know is that when I play with my phone while you’re talking to me, it doesn’t mean I’m not paying attention. It doesn’t mean that I don’t care about what you have to say. It doesn’t even mean I’m being rude. By playing with my phone, or sometimes iPad, I’m keeping myself grounded in a world that’s scary to me. I’m stopping the thoughts and obsessions from spinning in my brain. I’m stopping the sounds and noises from pulling me away from reality.

What you need to know is that I am not lazy. For most people, going out and about is no big deal. But for me – it engages all my senses. I have the unfortunate combo of hypersensitive hearing in one ear and hearing loss in the other. It makes it easy for sounds to overwhelm me. Lights hurt my eyes. Everything hurts. Certain sounds even hurt my ears.

What I want you to know is that some of my interests are childish, despite being 28 years old. It doesn’t mean I’m childish, it merely means that this is something that comforts me in a scary world. Yes, I’m 28 with no kids and can sing a lot of the songs from Daniel Tiger’s Neighborhood and countless Sesame Street jingles. What of it?

What I so badly need you to know is I’m not flaky. I’m not lazy. I’m not unreliable. If you knew me, you’d know I’m loyal, almost to a fault. Ask my best friend about the impound lot adventure from hell. If you need me, you bet your ass I will be at your side. But sometimes, even often, I cannot function. It doesn’t mean I don’t love you. It doesn’t mean you aren’t important. It does mean that my body just sucks and sometimes decides to go on strike or stage a mutiny. Or both, I guess.

What I need you to know, with all my heart, is how much it hurts me when you judge me. When you cast me the side eye for not being disabled enough. When you look at me funny for using the motorized cart at Target. When you judge me and my friends when we park in the handicap spots at Noodles & Company. I wish with all that I am that it wasn’t like this. I wish with all that I am that it was different. But it’s not.

I need you to know so that you can be my friend and that I can be your friend.

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If only it were a choice

Image is of me wearing my reading glasses, plopped sickly on the bathroom floor with my golden torbie-kitty Athena plopped on my back.

Image is of me wearing my reading glasses, plopped sickly on the bathroom floor with my golden torbie-kitty Athena plopped on my back. This picture was taken in May.

Soon, I will write about my trip. Soon, I will share pictures of my trip. But today, today I am sick. Today I am in pain. Today I feel awful.  Today, I want to badly to feel normal. More than anything, I crave normal.  More than anything, I crave living a life without pain. Right now? Right now it is 5:54 am. The medication I need to feel human, the medication I need to not feel as much pain, the medication to stop the swelling form my bug bite, the medication I need so I don’t cough when I lay down, that’s across the room. And even though it’s only ten steps away, right now it’s far. It might as well be ten miles. It might as well be forever away. And that’s just the physical side. Emotionally and mentally, the energy is gone too. It’s so much more than physical. It’s so much more than being thirsty. It’s not being lazy – I hate the lukewarm bottle of water beside me. But I’m too sick to get up and get some cold water.

This life isn’t a choice. I can’t count the number of people who have told me how lucky I am. How nice it must be to be able to sit around and do nothing all day. To watch all the Netflix I want. To play all the video games I want. But my life? My life is hardly doing nothing.

I won my battle with social security. Victory number 1. I am fighting for my Medicaid and Food Stamps back, thanks to a screw up I made (I flipped my housing and Medicaid deadlines). My days are spent making phone calls, avoiding phone calls, sending emails, avoiding emails, shuttling to doctors. And trying to actually enjoy life in-between. Doing the things outside my apartment, hell, outside my TOWN that I love doing so badly.  But right now?

I can’t even get up to get my own medication and water. I can’t get up because it hurts too much. If I move ever so slightly, oh, holy ow.

If only it were a choice. If only I could choose to be happier. If only I could choose for the pain to go away. It would be so much easier, wouldn’t it?

But that’s not how my life works.

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*insert a witty remark about ableism here*

I was recently told that “My partner’s niece has CP and is in a wheelchair! She doesn’t let it hold her back. I sense that same grit in you.”

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Well then. I guess it’s true, to an extent. I am fiercely stubborn. I am fiercely determined. I don’t let the fact that there is no cure for my disorder mean there is no hope in my life. But the thing is, it isn’t always that simple.

Some days, I’m in the emergency room, like this day back in late May. Other days, I’m in bed in pain. Some days I do incredible things – not despite my disability, but because of it. Because I’m living with it. Because it’s who I am. But it isn’t a choice. I live with it – I move on because I have to. Life can’t stop because I’m disabled. But it doesn’t mean I have to be your inspiration. It doesn’t mean I have grit and determination just because I am disabled. It’s just all a part of who I am.

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I kNow a Fighter

Photo on 3-2-15 at 7.58 PM

You held me down, but I got up
Get ready, ’cause I’ve had now
I’ve seen it all, I see it now
I’ve got the eye of the tiger, a fighter,
dancing through the fire
Cause I a champion, and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am the champion, and you’re gonna hear me roar.

This year’s campaign with the Children’s Tumor foundation is I Know A Fighter. I don’t know life without NF. I was diagnosed at three years old. I’m turning twenty-eight this summer. I’ve known had to say my disorder from that age. Apparently it’s cute to hear a three year old rattle it off.

I’ve never known life without NF. But perhaps someday I will. Perhaps some day I won’t see my doctors yearly , afraid another tumor has grown. Some things cannot be repaired – my dural ectasia cannot be fixed, my vertebrae cannot regrow.

But it doesn’t mean it’s hopeless. It doesn’t mean things won’t ever change. But until then,  I’m a Fighter. Until then, I fight NF. I fight the internal and external signs. And I keep on living.

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you give and take away…

I haven’t written in awhile, so midnight while watching Soul Eater is the perfectly logical choice, right? Of course. As I’m curled up here in bed, wishing my summer had taken an incredibly different term, the start of school just days away (f I can afford it, but that’s another rant for another day), not knowing how my life is going to play out, it’s sort of terrifying watching where my life is going.

On July 9, I had repeat back surgery, this time to do a partial hardware removal. Things were expected to be fairly uncomplicated. Two day hospital stay, sent home to recover, not a big deal, right? Well, I should have known better. My two day stay turned into a nine day stay, as I developed hospital-acquired pneumonia, diagnosed the night my fever hit 104.7 degrees (highest fever of my life, man). Nearly a month later, I still have a Foley in. Walking is incredibly difficult, as my high school knee injury decided to completely flare up and crap out, so I have a very attractive full leg brace. I knew at one point I may need a full leg brace, but it was a hard  pill to swallow alongside the back surgery.

The surgery also gave me wicked insomnia. I’m able to sleep, some nights, but not others. My primary (who is named Happy Thanksgiving… yeah… really…) prescribed Lunesta but my insurance is denying it and we’re having to fight for it. Le sigh. Just like my Lyrica fight and that took a few weeks to get approved. It’s hard, man, it’s hard.

The simplest trips exhaust me, the most basic chores make me feel like death on a stick. I’m struggling with recovery, and it sucks! It’s been a rough, rough road. I just don’t know how I should feel about it, even. Should I feel relief that I’m recovering? Regret that things have turned out so poorly? Thankful that, for the most part, my doctors finally got their heads out of their asses are and trying to help me?

I find myself terribly angry at God. While at one point, my faith is keeping me going, another part is filled with rage and anger. Why did He let things turn out like this? Why can’t He just freaking HEAL me already? He’s God, right? Surely He can make me better and take away my pain. But at the same time, He’s not. And I can’t understand why. I can’t understand what lessons He wants me to learn from this.

My life has become a whirlwind of appointments, and when it’s not, doing some simple picking up and laying in bed playing Persona 4, Final Fantasy, or Zelda. Or watching Netflix. It sucks that this is what my life has turned into. It sucks that this is how I’m spending my summer. Not having fun outside, not having fun with my friends… but laying around in pain. I mean yes, good things are happening this summer, but at the same time, so much not good is happening. I’m watching my health fall to shambles, and not a single thing can be done.

I just wish there was an option to make it easier. I just wish there was an option to make this pain go away. I just wish there was an option to make things better.