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If there’s any hope for love at all, some walls must fall

Some walls are made of stone,
Sometimes we build our own
Some walls will stand for years,
Some wash away with tears
Some walls, some walls

Anyone who knows me knows that I’m a ball of nerves and anxiety. Most people know I have a fairly traumatic past, albeit  bits and pieces of the details. And many have asked how the heck I survived  it. They’ve asked how I’ve gotten through. I’ve always just kind of shrugged – I kind of survived to prove the whole world wrong that I couldn’t (want me to do something? Tell me I can’t or tell me it’s impossible. I WILL prove you wrong.)

I survived by building walls. It wasn’t safe to cope with things as a child, it wasn’t safe to let anyone know how broken and upset I was. So I built walls. For years, those walls have kept me safe. It’s how I survived a painful childhood, it’s how I coasted through college. I wasn’t in a safe place to cope, I wasn’t in a safe place to deal with with everything being thrown at me.

Some walls are lined with gold
Where some hearts stay safe and cold
Some walls are made of doubt
Holding in and keeping out

And so, I built careful walls to keep myself safe and to, quite literally, survive. I didn’t know who was safe and who wasn’t. I’d been backstabbed so many times that the thought of letting anyone see past the walls was terrifying. I’d break down the walls, little by little, and then realize it wasn’t safe and go back into hiding behind the walls.

After so many years of hiding behind careful walls, it has a tendency to blow up spectacularly  in your face. You see, those walls have been up to keep my heart safe. To make sure that no one can hurt me. But here’s the thing.

How will you ever know what might be found
Until you let the walls come tumbling down
If there’s any hope for love at all,
Some walls, some walls must fall

It took years for me to build the walls, years of closing people out and pushing the world away. I don’t know how to let the walls fall. Everything has been cooped up, pushed in, so tightly protected for so long that while the walls need to come tumbling down, I am absolutely terrified of what will happen if I start breaking down the walls. It feels like a dangerous game of Jenga – that if just one brick is removed, things may stay stable but if too many bricks are removed, everything comes crashing down out of control and I won’t be able to stop.

But yet…if I want love to win, if I want to ENJOY my life, if I want to THRIVE, the walls have to come down and I need to deal with the reasons I built them in the first place. If I want to live without fears, pain, and anxiety consuming me…the walls need to come down. I just have so many fears of what will happen if I let the walls come down. But what is scarier? Living with the walls I know and the familiarity of depression and anxiety  or finally seeing what is beyond that? Which one is more worthwhile? I just don’t know how to bring the walls down, but I think I’m finally ready to learn.

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It’s been a long day without you, my friend

Two and a half years ago, I lost one of the most important people in my life. Losing Beth was one of the most difficult things that I’ve gone through. It’s been two and a half years and yet I still have found myself picking up my phone to send a text. I still find myself thinking I should share my hospital adventures with here. After all, we bonded through a world of hospital and doctor stories. When I want to talk about baby names,  I find myself thinking “Dang, I should talk to Beth.”

Shortly after Beth died, I read that grief is the price of love. It’s a pretty profound statement, really. By choosing to love, I chose to grieve. By choosing let people in my life, I am ultimately choosing to one day say goodbye in some way, shape, or form. Is it worth it? I think it is.

Beth and I had a pretty incredible, one of a kind friendship. We had so many inside jokes, so many running gags. Some of them I’ve shared with others to keep Beth’s memory alive (the ones that can be somehow explained, I mean) and others will go to my grave as well.

So many days are now longer and darker, simply because I don’t have Beth to share them with. Keep in mind we were exchanging thousands of texts a month, in addition to Facebook convos. The fact she lived in Colorado and I lived in Minnesota didn’t stop a damn thing. The fact that we only hung out in person for one week didn’t change anything. Our friendship was still so natural when we actually met each other.

I didn’t expect to be still reaching for my phone to contact Beth two and a half years later. I didn’t expect my heart to still be broken everything I see anything cinnamon or pumpkin flavored. I didn’t expect to still long to share my hospital adventures. I didn’t expect it to still HURT so much all this time later.

I’ve come to accept that grief doesn’t have a timeline. I’ve come to accept that grief becomes a part of me, a deep part of who I am. And you know what? It doesn’t have to be a bad thing. For my heart-wrenching grief means that Beth is still deeply loved and sorely missed. My grief is my final gift to her. As long as I talk about her, as long I speak her name, her memory still lives on.

 

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the very same fear that makes you want to die, is the same fear that keeps you alive

From the very same fear that makes you want to die,
Is the same fear that keeps you alive

It’s kind of weird. I don’t know what it’s like to not be depressed, to not be anxious. Because I was so young when my trauma started, I don’t know what it’s like NOT to have depression, anxiety, what my life was life Before Trauma. It’s weird, in a way – because this is what I know, the thought of getting better? The thought of not being consumed by things? It’s absolutely terrifying.

I’m not currently suicidal, though I have been in the past. But it’s odd. I was terrified to stay alive. I was terrified that things wouldn’t get better. I was scared to death that things would never change, that I would never see a difference. But at the same time, that very same fear is what kept me going.

Fear often fuels me.  In both good ways, and bad ways. At one point, fear is what drove me to the brink of despair, it’s what drove me to self injury. It’s what kept me from moving on with my life. But yet? At the same time, fear is what inspires me to keep going. It’s what keeps my fire burning because I want to see what happens next.

So often I’ve been told that fear is a bad thing. But I don’t know that it always is. I don’t know that fear is always a horrible thing. Fear is often what kept me safe as a child. Fear is often what made me determined to prove the world wrong. It’s ultimately a matter of what we DO with our fear that matters, not fear itself.

Lyrics from War on Drugs by the Barenaked Ladies

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When chronic illness becomes acute

I am chronically ill. That is no secret. I cope with it as well as I can – I have my good days, I have my bad days. I have the days where I can do things, and I have the days where I lay in a pitiful puddle on the couch with blankets and my stuffed monkey (ideally, a cat or two has joined me).

As a result of chronic illness, I’m pretty tolerant of pain and even the occasional acute illness. But then, you have your chronic illness becoming acute. And that’s when it gets hard. That’s when things start falling apart. That’s when my coping becomes not coping as well as I once did.

As you may have noticed, I’ve not been updating as much as usual. November considered of three ER trips, one urgent care trip, multiple outpatient trips, and an inpatient hospital visit. Things are still bad. My health is still gone.

Things got better for a few days, and then came crashing down again. I try so hard to strike the balance – how do I ration my energy? How do I do the things I need to do? How do I do the things I want to do? How do I live my live and enjoy the ride, vs just hanging in there?

I try so hard to be a good disabled person. I try to stick to my upbeat, happy-go-lucky, spunky self. I try so hard to not be bitter, to not be cynical, to do all the things sick people are supposed to do – roll with the punches, act like I’ve got my act together, keep the delicate balance of keeping real while still keeping certain things quiet.

But it’s at the point where I can’t hide how sick I am. I can’t hide how exhausted I am, despite sleeping. I can’t hide the coughing. I can’t hide the fact that I’m in an incredible amount of pain. I can’t hide the fact that I’m terrified my NF is taking over my life and it isn’t just a minor hiccup. It’s scary. And it’s so *hard*.

I hate the blurred lines between acute and chronic. I hate the fact that my activism and advocacy – the two things I love doing almost more than anything, are taking a hit. My relationships with friends. The things that need to get done simply don’t. I try so hard, I struggle so much, but when chronic becomes acute… it gets hard.

Most of my acute health updates will be published on my CaringBridge, but as this is more general related, I put it here. Because I am sure others can relate to the struggle. The struggle when chronic becomes acute. When accepting being disabled becomes desperately searching for answers and hope and treatment. When trying my damndest just to stay comfortable becomes a struggle.

Be gentle. Handle with care. Because when we cross the delicate line from chronic into acute, that’s when we need your support and for you not to leave us.

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Ableism and Memes

There is something that has really been frustrating me lately, which is why I’m writing a blog entry at nearly 11 pm on Sunday evening after being out of town for nearly a week. But I can’t not say it anymore. I can’t keep quiet about this level of ableism.

There are a couple of memes that are really popular on Facebook lately. They come and go. One of them is a math problem, and implies that there is something wrong with you if you can’t solve it. These happen a lot. The other one is an image, and it implies if you can’t spot the difference, if you can’t see what’s wrong with it, you’re also somehow lesser than.

STOP.

That is ableism.

Not everyone is good at math. I failed multiple math classes at college level. I barely scraped by eighth grade math. I have a learning disorder and as a result, math is very difficult for me. And yet, people make comments like “if you can’t solve this, you shouldn’t be able to breed.” “If you can’t solve this, you shouldn’t be able to vote.” “If you can’t solve this, *insert insult here*”. Okay, really? That’s offensive. I don’t need to be able to solve what to you is a simple algebra problem in order to be a member of society. There’s no reason to belittle those who cannot solve them. If you can? Great! If it is something you struggle with and still manage to figure it out? I’m proud of you. But for some of us, it isn’t possible. For some of us, no amount of trying can make something click in our brains that we literally are incapable of. All it does is hurt us. All it does is make us feel lesser than.

Then there’s the vision memes. You know. “If you cannot spot the red panda, then you don’t deserve to be on the Internet. “If you can’t see the problem, blah blah blah.” Again, stop. There are SO many reasons why this level of ableism is infuriating. It insults blind and low vision people. It insults people who may not be able to focus to find the thing. It mocks those who have very real struggles, and are actually amazing people – their brain just doesn’t work as your brain might.

I know, I know, someone is going to come back with “Well, I didn’t mean people like *you*. You’re obviously smart.” SHUT. UP. If you don’t mean the ones like me, then which ones did you mean? I’ll let those words sink in. You mean the ones that you pick and choose to not be good enough, right? The ones who were disadvantaged by no fault of their own. The ones that society already mocks and looks down on, because they don’t meet your bullcrap levels of good enough.

It’s absurd and ableist to base self-worth, intelligence, and basic rights to people based on just some viral meme. So knock it off.

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To the person who sent me a nastygram

I am disabled.

My disabilities and my health issues, both visible and none, psychiatric and other types, hinder my various abilities in life. I don’t know what it’s like to be able bodied. I don’t know what it’s like not to have a disability.

Being disabled is hard. I sometimes lose things I love – like events I’ve been looking forward to for a year, friendships, certain aspects of freedom. I cope by talking about it.

Like a lot of people in my age demographic, I opened a Sarahah account. I knew I was taking a risk. But I got so many nice, sweet compliments and when I’d feel down, I’d read them and feel better.

But there’s always that one.

“You talk about your health problems too much and it makes you seem desperate for attention and pity. Grow up.”

I don’t do it for attention or for pity. I do it because it’s my life. I do it because it’s the reality of how I live. I literally don’t know life without being disabled.

I assume you wouldn’t tell someone who posted constantly about their kids they were desperate for attention and pity to grow up, right? After all, they live with their kids and see them every day. Most people are okay with people talking about their kids and don’t write them off as immature.

What if someone talked about their hypothetical job constantly? Again, they must be desperate for attention and pity, right? No, I guess not.

So WHY is it so taboo to talk about my health constantly? It’s what I live with every day. Juggling doctors, juggling appointments, finding the fine balance between what I can and can’t do is incredibly difficult. I talk about my health problems. I actually have been working on posting it less.

Disabled people are often put up on a pedestal to admire, we’re expected to be inspirational, we’re expected to defy the odds. But not all of us do. Not all of us defy the odds. And there’s nothing wrong with that.

I don’t know who you were. I don’t know who you are. But please, just delete me from Facebook if you’re that annoyed with me talking about my life and existence as  attention or pity? I honestly don’t give a crap if anyone comments on my stuff. If anyone feels bad for me. I just want to talk about my life and my existence as it is.

And finally? Saying something like that anon, and telling me to grow up is actually hilarious. Pretty sure that means I’m not the one who needs to “grow up” if you’re sending anon nastygrams. There’s a delete or block button, and I suggest you utilize that if I annoy you that much.

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Babyz and my venture into “fandom”

In 1999, a now somewhat obscure computer game called Babyz was released. It was a three years later when someone I went to high school with gave me a copy of it. In retrospect, it was really kind of bizarre. I was essentially a digital pageant mom, y’all. The game was about, well, raising babyz. You taught them to walk, you fed them, you played with them. There were also versions of the game calls Catz and Dogz, and I recently found my discs for those… but that’s another story.

In 2002, I was fifteen years old. I went to a private Christian school. My home life was, without giving explicit details, less than ideal. The details are horrific, but unnecessary. I’d been online before then – I’d been on other message boards, read fanfic, wrote aardvark fanfiction, etc. But Babyz? Babyz was my introduction to fandom. I’ve said off and on that Harry Potter was, but that’s not entirely true. It was Babyz.

There was a Babyz RP board, so even after my aardvark fan fiction days, there was roleplaying. Of a computer game. About babyz. I never said my younger internet days weren’t weird, y’all.

I got my early internet message board moderating experience. I learned HTML and CSS thanks to Lissa Explains and fansites (which unless you know my info from those days, those websites are staying buried in the abyss, thanks). I made friends I still talk to frequently today and as a direct result of those message boards, I moved to North Dakota.

 

People make fun of internet communities, but as a lonely teenager, late nights talking with my Babyz friends saved my life (until I discovered JCY and the Zee a few years later, and gained even more lifelong friends). As a lonely, isolated teenager in Ohio, having a game to escape to? Having a website to run? Entering my digital kids in pageants? Really, this is odd to explain to an outsider…

I often joke that you can tell when I met someone by what nickname they refer to me as. I no longer answer to my birth name, but the Zeeps called me Angel for years, and I still answer to that though I think they’ve mostly switched to Nora. My Babyz Community people that I still talk to call me Nora now, but the nickname Anniebear is still very recognizable.

It was one game. It was one friend saying “Hey, I think you’d enjoy this game.”

And that one game changed my life.

 

There were other communities I was involved with as a young teenager – some of the more typical ones, like Neopets, and some other more offbeat ones, like Wajas. But nothing, bar none, will be like Babyz.

 

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Let disabled people talk about their lives

I’m really tired of the way disabled people are currently treated.

If we talk too much about our disabilities? Oh, we’re too NEGATIVE. We’re just whining.  We need to try  ~positive thinking~  *tosses glitter*. We just need to be more positive! Yay!

If we try to be too positive about our disabilities? See, it’s not really that bad. We can’t be THAT disabled if we’re able to see the good in it. If we’ve accepted our disabilities, then we must not really be disabled. 

The thing is, no matter what we do, people seem uncomfortable that disabled people exist. Some think that we should be willing to share every detail about our lives, some think we should just shut up and live in silence.

The thing is, EVERY person has a DIFFERENT level of comfort with what they are okay with sharing or note. For the most part, I am happy to talk about my disabilities and teach and educate. But sometimes, I just plain don’t want to and there is nothing wrong with that! I don’t owe anyone an explanation on why or how a certain aspect of my disability affects me. “Because I’m disabled” IS an adequate answer to “why can’t you do thing?” and details aren’t necessary.

As an activist and an advocate, I think it’s important to be open and honest about my disabilities. Which, for the most part, I am.  However, that doesn’t change the fact that there are some things I am more private about and don’t really want to talk about. And just because I’m willing to write about it, doesn’t mean I want to answer the random person on the bus who asks me about it.

I get to choose when, where, why, and how I talk about my disability. That isn’t for someone without my disability to decide. If they don’t want to hear about it, they don’t have to put themselves in a position where they have to listen. If I want to share why or how a certain thing affects me, that’s okay! I’m not being negative or candy-coating my disability or whatever. If I don’t want to, it doesn’t mean I’m not “really disabled” or I don’t “really want to educate”. I have a right to privacy just like anyone else.

People should be able to talk about their disabilities how they want.

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Smashing the OCD stereotype

I have OCD.

Yeah, I know. I’m not a neat person. My room is best defined as the name of one of my college radio shows, premeditated pandemonium. People find it hard to believe that I have OCD because I’m not a germaphobe and I’m not a neat person.

But it doesn’t change the fact I have OCD. OCD isn’t just about being clean and tidy. OCD is recurrent and persisting   thoughts.  OCD is about obsessions, not just compulsions. And those obsessions can take the form of thoughts. Of your brain looping things over. And over. And over.

Bad events that have never happened and never WILL happen loop in my brain. “What ifs” loop my brain. I check things that have been checked. Again. And again. I ask questions I’ve asked. Again. and again. I repeat myself. Again. and again.

Because I’m TERRIFIED of what will happen if I don’t. 

OCD isn’t just about being neat.

I don’t want these thoughts.

I don’t want my brain to be like this.

But I literally can’t control it.

I loop bad events that have never happened, that never will happen, in incredible detail in my brain. It’s terrifying. It’s scary. I feel like a horrible, horrible person. I’m not. I’m literally not in control of my brain and there’s nothing bad about me for being like this.

You see, OCD isn’t a one size fits all disorder. The stereotype of the Danny Tanner-esque germaphobe isn’t what OCD is for everyone, or even the MAJORITY of people! You can have OCD without obsessing over cleaning. You can literally obsess over anything. Your compulsions don’t have to be to keep things clean! Your OCD is still real and valid even without these harmful stereotypes.