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No cure doesn’t mean no hope

I was born with a neurological, genetic disorder with no cure. I’ve often said, and I will say it again, no cure doesn’t mean no hope.

I have neurofibromatosis type 1. What does it mean, for me, personally? Well, I’m glad you asked!

My vision is absolute shit. I am defined as low vision, meaning my vision does not correct above 20/70 even with glasses. Lasik or other correctie surgeries are not an option for me. It means I use larger fonts, sometimes need help reading things, etc. It is one of my more difficult disabilities for me, though I’ve learned how to adapt in many ways.

I have multiple learning disorders. I have dysgraphia, dyscalcuia, and ADHD. I am also autistic, which may or may not be related. I also struggle with spelling and grammar, which while it isn’t a specific learning disorder, it’s certainly related to all this stuff.

I have…well, had? Scoliosis. I’ve had two back surgeries as a result. I also have vertebral scallopingand dural ectasia. Basically, my back is a hot mess.

As a result of my NF, I have migraines.

Because I have NF, I don’t know what it’s like to not be in pain. I don’t know what it’s like not to hurt. I don’t know what it’s like not to be able-bodied, because I never have been and I never will be.

This disorder has no cure. This disorder has no treatment.

But it doesn’t mean I’m without hope.

It doesn’t mean that my life isn’t worth living, disabilities and all.

In September, I’ll be walking with the Children’s Tumor Foundation. Please consider sponsoring  me?

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Growing Up Disabled

I have always been disabled. Some people acquire disability, some people are born with it, some people are born with it and don’t realize they’re disabled until adulthood.

In my case, I was born disabled and I’ve always known I’m disabled. It’s very much of fact of life, the same way I have blue eyes and pale skin. It’s just the way I’ve always been and always will be. There’s no changing it, no looking around it.

Growing up disabled and knowing it means that people always  belittle you, because you’re disabled. You’e often talked to like you’re not there. You’re talked around. You’re handled with kid gloves. You’re treated as lesser than. Why?

Because you’re disabled.

I have been told, to my face, that I’m an inspiration just for doing things like getting a soda out of the drink cooler at Walgreens (I wish I was joking…). I have been told, to my face, that people would kill themselves if they had be disabilities. I’m told I should be grateful to be objectified and turned into inspiration porn, because it touches other people. I’ve been told so many bullcrap things.

Because I’m disabled.

I’ve been told I don’t deserve health insurance. That I should die, because I am expensive to keep alive. I have been told that because I cannot get a job, I don’t deserve to live. I have also been told I have to get a job, that there are “jobs for everyone”. This simply isn’t true in today’s world and climate. I was actually kicked OUT of vocational rehab for being too disabled (which at the time, was frustrating. Now I think it’s hysterical).

Because I’m disabled.

I’ve been told not to let my disability define me, that I can do anything despite being disabled, that I can’t do things because I’m disabled. I’ve been told both extremes.

Because I’m disabled.

I’m told that “my mind is fine”, even though the rest of my body isn’t. Which is ableism, because my mind isn’t fine. And there’s nothing wrong with that. I’ve been told that I need therapy, I need meds, I need this diet, I need that diet.

Because I’m disabled.

Somehow, being disabled, means it’s open season. It’s somehow okay for strangers to comment on my health, on my very existence. It’s okay, when it really shouldn’t be.

Because I was born disabled, I’ve lived with this every day of my life. I’m sure I would if I had acquired disability, but I’ve never known what it’s like to live without this. What it’s like to live without people commenting on my very existence, in ways that would be rude if I wasn’t disabled.

Why? Why is this acceptable just because I’m disabled? I was born disabled, just like some people aren’t born disabled.

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Step Up For NF

On June 3rd, 2017, I am doing a walk here in Fargo for NF Upper Midwest. Click here  to donate. But let me tell you some about NF.

I was diagnosed with neurofibromatosis at age three, so in 1990. This was before NF was detectable in pregnancy testing, before blood tests were available (which I had at a later age). I have literally never bene “healthy”, I was even a special care nursery baby.

Because of NF:

I have frequent migraines.

Because of NF:

I am in constant pain.

Because of NF:

I have a balance disorder.

Because of NF:

I have had two back surgeries.

I have also had a tumor, but I am a horrifically unlucky person and my one tumor was, oddly enough, completely unrelated to my NF. That’s right. I would have had it even without NF.

As a result of NF,

I have multiple learning disorders.

As a result of NF,

I never graduated college.

I have low vision.

But you know what?

Charities  like NF Upper Midwest make a difference.

They give people like me people to connect to. People like me. People who have been there. People who understand. They support families – they hep them stay with their children when they’re in the hospital, they support them, they’re there in any way possible.

That’s why I’m walking.

That’s why I step up for NF.

To walk for families.

To walk for people like me.

To walk for hope.

Will you help me step up for NF?

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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 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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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.

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when your ableism is about yourself

I’ve talked and talked about ableism. I’ve talked and talked about what bullcrap it is. I’ve written so many things about how much ableism has an affect on my life. I’ve said so many things about how much of an impact your ableism has on my own life….

And yet, the person I’m the most ableist is someone I see in the mirror every day. The person that I know the most intimately. The person who is intertwined with me…because that person is me. The person I’m hardest on? The person who I use ableist slurs at? That person is me.

It’s pretty common knowledge I withdrew from college. Largely because of my physical health at the time, but I’d be lying if I didn’t say my neurodivergent brain wasn’t also a factor.

Which is where my own ableism comes in.

I tell myself that if I had just pushed myself harder, I could have gotten that degree.

Which is bull, because if a friend had done the exact same thing, I wouldn’t dream of saying that to them.

Somehow, the words I would never utter to someone else, are magically OKAY when it’s about me.

[image description: drawing of an orca saying “Just because you had to drop out of school doesn’t mean you’re a failure.” in a gray speech bubble. Thank you to EMM not EMMA. on Facebook)

[image description: drawing of an orca saying “Just because you had to drop out of school doesn’t mean you’re a failure.” in a gray speech bubble. Thank you to EMM not EMMA. on Facebook)

In high school, I was told that I could do whatever I wanted. That my disabilities wouldn’t hold me back. In fact, I was told I minimized my “struggles” and didn’t fully grasp how much my disability impacted my life. This casual ableism, this micro- aggregation… became so twisted inside me, so much a part of who I was… that I likely stayed in college for far longer than I should have.

My own, personal ableism could have killed me. I tell myself my disabilities are no big deal, even though I’m totally and permanently disabled. I cannot work. Not only is my health too unstable, I’m likely to push myself on the days where I am well enough too much and land myself in the hospital. I was threatened at least once while in college that if I didn’t skip class, my doctor would put me in the hospital. My own, personal ableism is lethal.

I talk about the ableism I deal with from others on a regular day. But to admit that I am ableist about myself is hard, one of the hardest things I’ve ever said. I feel that people judge me, and think I’m just selfish or lazy because I can’t get a job. It isn’t for lack of wanting. I desperately want nothing more than to hold down my dream job. I want nothing more than to finish my college degree, but college is a world that is completely inaccessible for me. And THAT is terrifying to say, terrifying to admit. It’s like I’m saying I’m a failure, it’s like saying I’m worthless (see, there’s my own casual ableism at play once again).

My name is Nora, and I am ableist sometimes. And the person I pull down, the person I bash the most, is myself. The person who I judge the most for their disabilities, is me. If another friend were autistic, had my physical health list, had my same brain cooties, I would support them. I would tell them  they were good enough, they were enough. That it was okay they didn’t finish college. But the person who I cannot give that same advice to is myself.

Part of becoming a better person, a better advocate, a better activist, is learning to remove the ableism from my life. Even when it’s about me. This isn’t easy, but it’s something I’m trying to do. And admitting is the first step, right?

 

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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.