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Those who mourn…

Grief is hard. “Blessed are those who mourn, for they will be comforted.”

Those who mourn…

Grief isn’t ever something you are prepared for. Sometimes someone dying is expected, sometimes it’s very unexpected. But every single time, for me, anyway, it’s a fresh slap in the face. I remember the moments when I found out. The moments my world came crashing down. I remember where I was when I found out that Nick died, that Beth died, that Sarah died. I remember finding out about Rachel and Stephanie and… I remember.

Those who mourn…

I don’t think I ever fully recover from grief. I adapt to my new normal. I learn my new ways of living. Nearly two years later, I still am overwhelmed with cinnamon-flavored or pumpkin-flavored sadness in regards to Beth. When I tried Pepsi Fire? My first thought was “Whoa, Beth would LOVE this” because she loved cinnamon. (It was good, just, uh, don’t chug it. It’s how I imagine the cinnamon challenge to be. Just say no.).

Those who mourn…

I was once told that grief is the price of love. Is it? To love someone so deeply, it continues after they’re gone? To love someone so intently, that your world crashes when they’re gone?

I know logic and intellect. I know that by two years out, logically I should be more recovered. But my heart isn’t ready. I don’t WANT there to be a day where I don’t reach for the phone, you know? I don’t want there to be a day where I don’t think “I wish I could tell Nick this” or “I wish I could tell Beth this.” Six years, two years…no matter how long it’s been, I don’t want things to change. I don’t want to no longer think of them. Because that hurts even more than them not being here.

Moving on is hard. But grief is the cost of love, right? My grief is my final gift. The tears, the agony, the heartbreak… they’re my final gifts to them. And they come from the deepest part of my soul. I can’t think of a better final gift than loving them more fiercely than ever.

Those who mourn…

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NF Awareness Day 2017

My name is Nora. I am twenty-nine years old. And I have NF type one.

NF, or neurofibromatosis, is a genetic disorder. I was born with it, and I will die with it. The way it affects people is different – it’s what’s known as a snowflake disorder as no two people with it are alike. I only know how it affects me.

I have cold intolerance.

I have heat intolerance.

I get migraines.

I had a tumor….but I am incredibly lucky (or unlucky?) in that my one tumor actually wasn’t NF related. Yeah. I would have had it anyway. Luck. Skills. Or something. I have it.

I can’t regulate my weight.

I live with pain.

My immune system is shit (well, okay, this actually isn’t completely related. One of my doctors once told me my body doesn’t read the textbook…)

I am autistic.

I have ADHD.

I have a balance disorder.

I could go on and on.

There is no cure, no treatment.It’s just how I am. It’s just how I always will be.

I am low vision.

There’s so much of me that is who I am because I have NF.

All I want is treatment.

All I want is relief.

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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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Burnout, burnout

Ah, burnout. I’ve written about it before, and I’m writing about it again.

It’s an exhausting place. it really is.

It makes just existing utterly exhausting.

Years of passing, years of existing take a toll.

I am tired.

I am worn out.

I am weary.

Years of passing wear me down.

No more, I say, no more.

For I am burned out.

For I am broken.

For I am lost.

For I am struggling with basic self care.

Because of years of passing.

Because of years of trying.

It’s not a good thing.

 

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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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Self ableism

So it’s nearly 1130 pm on May 1st, 2017 which is blogging about disablism day. It seems like there are so many things I could say, and so many things my friends and fellow advocates have said, that it feels like there isn’t much left for me to say.

Largely, the largest form of ableism I have been struggling with is against myself. I can’t hold down a job, I couldn’t graduate college, I was even actually kicked out of vocational rehab. For me, school and a job just isn’t feasible. And yet.

I tell myself maybe if I tried harder.

I tell myself maybe if I did x, y, or z.

I tell myself that maybe it’s my fault all these things didn’t work out, which isn’t remotely true.

I beat myself up.

I tell myself maybe I can try again…. forgetting the fact that school nearly killed me. Forgetting that I was constantly sick, constantly missing class, constantly not capable of meeting the demands. To say I’m not capable isn’t me degrading myself or me saying being ableist against myself. It’s accepting my limits. It’s realizing that because I’m disabled, there are some things I simply cannot do.

I’ve seen people say “if I can graduate college, anyone can.” “If my grandma can have a job, anyone can.” Well, that’s bullcrap.

Not all disabled people can have jobs.

Not all disabled people can graduate college.

But all disabled people are worthy of food, shelter, and happiness.

It’s time we smash our self ableism and accept ourselves as is.

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accepting autistic

I am autistic. It’s as much a part of me as anything else is. It’s the Instagram filter I use to view the world, it’s the very way I interact with the world. By accepting autistic, I am accepting who I am.  I don’t know what it’s like to not be autistic – even when I didn’t have words for it, it’s who I’ve always been. To me, being autistic is as natural as existing – for I cannot exist without it.

Accepting being autistic doesn’t mean I glorify it. I mean, I’m happily autistic. I’m glad there is a name for why I am the way I am and a way I can explain it in terms others can understand and relate to. But it also doesn’t mean there aren’t things that are hard and aren’t things that I would change if I could. Because there are things I wish were easier. I wish that I could have a job. I wish that I could complete college. But it just isn’t feasible.

Accepting autistic doesn’t mean I think that I’m better than other autistics or people who aren’t. That’s silly. It does mean I accept myself how I am. It does mean that I don’t hide who I am. It means I accept myself, autism and all.

For me, coming to terms with being autistic has been important. Because I wouldn’t be -me- if I wasn’t autistic, I would be someone else entirely. But would I be happier? Sadder? Would I still be a loyal Hufflepuff? What is autism, what is my PTSD, what is anxiety..what is what? But the thing is, wishing I wasn’t autistic doesn’t change anything. I can’t change being autistic. So why NOT accept it? Why NOT make the best of it? It’s better than wishing I was something I’m not, right?

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I reach out to the truth

Now I face out, I hold out
I reach out to the truth of my life
Seeking to seize on the whole moment to now break away!

Oh God let me out, Can you let me out?
Can you set me free from this dark inner world?
Save me now last beat in the soul.

My entire life I’ve been told there are so many things I cannot do because I am disabled. I’m a victim of both being told there are so many things I cannot do and that Ic an do anything I set my mind to. How these both work, I really don’t know.

As a result, I’ve been trapped in lies. Lies that I’m not good enough. Lies that because I’m disabled, I cannot achieve anything. I’ve been told that I need to not let my disabilities define me or hold me back. It’s confusing. And I need to find my own truth. Make my own truth. Find my own path.

Something I’ve learned is I need to reach out to my own truth. Reach out to it, even. Because it is within reach.

Because it doesn’t matter what I’ve been told. They were wrong.

It doesn’t matter what I believed.  It was wrong.

But what matters is the truth I know now and what I do with it.

 

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Autistic children become autistic adults

Autistic children become autistic adults. We are not adult children. We’re adults. Sometimes we need more support than others. That’s okay. Sometimes we live on our own, and sometimes we can’t. That’s okay, too. Some of us go to college. Some of us dropped out. Some of us never will go to college.

But autistic children become autistic adults. How you treat the autistic adults on Facebook who try to educate you or who just interact with you is how someone may treat your child someday. Autistic children become autistic adults. We’re adults. We deserve to be treated with respect, even if you view us as lesser than.

Treat us with respect. Treat us how you would want someone to treat your child. We were your child once. We were once young. Just because we’ve never been parents, doesn’t mean we’ve never been children. And above all, we’re real people with real feelings.

So please don’t mock our spelling errors. We’re trying.

Please don’t get upset when we ask you to clarify – we often legitimately don’t understand because how our brain works.

Please don’t get upset we repeat ourselves – we sometimes don’t realize we’re doing it, even though it’s right in front of us.

Please understand that sometimes we break up Facebook comments and don’t post everything in one big posts – long walls of post are “text walls” or “word salad” to us, and breaking them up makes it easier for us.

Please just use a little bit of compassion.

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To the autistic child

To the autistic child,

Hi! I see you. My name is Nora and I’m an autistic adult. We’re pretty awesome, if I do say so myself. It isn’t easy being autistic, and I wish there are some things that I had been told. That’s why, little one, I’m writing this letter to you. You may not know me, but maybe someday we’ll get to meet each other. Maybe we never will and we’ll only talk on the internet. Either way, you’re loved and so very amazing. Your brain is so COOL! Isn’t it nifty how different people are? Isn’t it nifty how different brains can be?

I don’t want to sugar coat things. Sometimes it’s hard being autistic. You know all those bright lights and loud noises? Yeah, sometimes I want to melt down, too. And sometimes I do. My brain just gets all these signals from different directions all at once and cannot tolerate it. And you know what? It’s okay. It hurts, and it’s okay to let people know we’re hurting. People may get annoyed or frustrated when we melt down, but we simply don’t have the words to articulate what’s going on inside our heads. And you know what? That’s okay. It isn’t our fault that sometimes we’re overwhelmed.

Sometimes, you know those little movements we make? We flap our hands, we rock back and forth, we spin around. We fiddle with toys in our hands or we wear special bracelets or necklaces. Sometimes we chew our shirt collars. Sometimes we make certain sounds. This is called “stimming”. Sometimes it calms us down, and sometimes it makes us feel good. You know what? It’s okay. It helps settle us down in a big, scary world. If it doesn’t hurt someone else, it’s okay for us to do it. Part of taking care of ourselves is doing things that helps us cope, and so that’s why we stim.

Sometimes we find a topic we like and just want to talk about it a lot. Our brains are like soil – the little info seeds take root and grow into various things we just love to talk about. Some people call them “special interests”, others call them “obsessions”. I just like calling them “interests”. Sometimes we just kind of info dump on them, which means just blurting out everything we know about the subject. This is okay! It’s part of what makes our brains special.

Maybe you have trouble doing, what many call, “using your words”. I don’t like that phrase. Words are hard. Not everyone can talk with their vocal cords, and that’s okay! Some people use sign language, which means they talk with their hands. Some people use what’s called AAC, which means they use a special device or iPad app to talk. They type the words into it or tap a picture, and it says their words for them. Little one, all forms of communication are valid. It doesn’t matter if you speak it, move it, or tap it – your words MATTER and we (the autistic community and those who love you) want to hear what you have to say.

Sometimes when we talk to people, we use words we’ve said before. Or maybe phrases we know from video games, TV shows, movies, or books. Or maybe phrases we’ve made up that have special meaning. This is called “scripting”. Sometimes, when we’re asked a question we just repeat it back. For example, maybe we’re asked “Do you want milk or juice?” We might just say “or juice”. This is called “echolalia”. Sometimes people got frustrated that we don’t seem to understand what they’re saying. But most of the time, we do. We just are communicating in the best way we can. But when people can learn our scripts, we can adapt and learn to communicate with them in a way that’s accessible to everyone.

People WILL sometimes talk about you right in front of you. People WILL sometimes say you don’t understand what they’re saying about you, because you’re autistic. People who say they love you may say mean things about you in front of you. People may record your most vulnerable moments, and place them on the internet for the world to see, claiming to raise awareness for you. They’ll claim you don’t understand. I know you understand. You may not look like you’re paying attention, but in your own way you are taking in the world around you. But even if you feel like no one else understands you and no one else loves you, know there’s one person who has never met you who would move the world for you, if she could. Know there is one loyal, passionate person who is fighting for your rights as an autistic child.

Precious child, you are fine as you are. You don’t have to change to fit in. You don’t have to be not YOU in order to be loved and accepted. Some people are autistic. Some people are not. You’re autistic. It’s okay to say no, even in a world that teaches you to say yes and obey every order. It’s okay to let people know you’re in pain. It’s okay to stim. The world wasn’t built for autistic people, and we have to learn to live in it in whatever way we can. Sometimes, people don’t understand our ways but that’s okay, because we don’t understand their non autistic ways!

I hope that one day you find acceptance, and not awareness.

Love,

Nora.