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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.

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Let that be enough

My hearts breaks every time I see a fellow autistic believe they are a burden. My heart breaks every time a fellow autistic thinks they aren’t enough. My heart breaks every time I see a fellow autistic think they don’t deserve accommodations, that they’re asking too much, that they should just suck it up.

You aren’t a burden because sometimes you need things reworded in a way that you understand. You aren’t a burden because sometimes you need silence and sometimes you need noise. You deserve to have a place you thrive in for work and school or anything, really. If that means you need noise canceling headphones, if that means you need to do it in a seperate, dedicated room – that’s okay! There’s nothing wrong with that.

If you need expectations written out and not just, well, expected  of you, that’s okay! That doesn’t make you a burden. Just because it’s not what the majority of the world seems to thrive on doesn’t mean it’s what YOU need to thrive on.

If you need to take a comfort object, if you need to stim, if you physically cannot sit still, that’s okay. You aren’t hurting anyone else by stimming, you’re doing what makes you comfortable in a very scary world.

Your existence is not a burden. . Neurodiversity is natural. You are WORTHY of the help and supports that you need to THRIVE in the world. Just because someone needs different, more frequent, or what you deem as “easier” accommodations, doesn’t mean that yours also don’t exist and that yours aren’t worthy.

The accommodations I need due to being autistic may be different than the ones someone else needs. That doesn’t make theirs more or less important than mine; it doesn’t make theirs more or less valid than mine. They still exist, because that PERSON exists. 

You are a beautiful, worthy person who just happens to be disabled. You’d beautiful and worthy and perfect without that disability, you’re beautiful and worthy and perfect with the disability. Accommodations make it so that you can enjoy and thrive in the world as you deserve to!

There’s nothing wrong with asking for help. It doesn’t mean you’re weak. There’s nothing wrong with needing supports. It doesn’t mean that you’re a burden. There’s nothing wrong with needing help sometimes.

You exist. You’re worthy. You’re loved. You’re valid.

And just for today, just for now, let that be enough.

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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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Accepting Depression

I’ve made it no secret that I have depression and anxiety. It’s very much a key aspect of who I am. It shapes how I view the world, it’s the lens I make decisions through. It’s my very core – I don’t know who I am without depression and anxiety. Despite meds (which is my choice!), despite therapy (again, my choice – I am currently choosing not to be in therapy but that isn’t a choice I have always made or had the option of making), despite hospitalization in the past… it’s very much a part of me.

I don’t know who I am without depression. I don’t know who I am without OCD. I don’t know who I am without anxiety. And that’s not necessarily a bad thing. Part of accepting being disabled has been accepting depression. Accepting anxiety. Accepting OCD.

It doesn’t mean it’s not disabling. Oh lord, it doesn’t. It doesn’t mean I don’t learn coping skills or ways to navigate the world. That’s silly to think I don’t. But it does mean that I realize it’s a part of me and I make accommodations in the world to make it possible for me to get around. It might mean I need a friend to talk me down when anxiety brain goes haywire. It might mean that some nights I need someone to watch fluffy and/or crappy YouTube videos with me. It might mean that some nights I’m just a puddle of exhaustion and brain cooties.

And that’s okay, because it’s my normal. That’s okay, because it’s the person I am. Accepting my limits, accepting my flaws has been crucial in accepting who I am. It doesn’t mean I glorify it, by no means do I. I don’t think it’s amazing to be depressed, I don’t think it’s great to have soul crushing anxiety that impacts every little thing I do.

But I do think it’s okay to accept it.

I do think it’s okay to say that other people need to accept it if they want to be my friend and interact with me. I do think that it’s wrong that when many people find out that I am psychiatrically disabled, their immediate reaction is “you need meds”, “you need therapy”, etc before they even interact with me and find out why I am the way I am.

Accepting my disabilities has allowed me to accept who I am. It’s high time for other people to accept them now, too.

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When I say I am autistic 

When I say I’m autistic I am not using it as an excuse. I’m not using it as a justification to act a certain way. What I am saying is hey, this is the way I am. This is why I am the way I am. This is who I am. I’m Nora, and I’m Autistic. My brain functions a certain way, and that’s okay. 
When I say I’m autistic, I’m trusting you with a part of my identity. I’m trusting you not to use it as ammunition against me. I’m trusting you to understand, be compassionate, and to treat me with respect. 

When I say I am autistic, I’m not glorifying autism. I’m not pretending it’s all sunshine and daisies and lollipops. It’s not. There as aspects that suck. But it does mean that I’ve accepted it all as a part of who I am – the beauty in it and the suckiness in it. 
When I say I am autistic, I am inviting you to see the world with the  filter uses. I’m entrusting you with the app that is installed in my core, the one that I literally don’t exist without. I’m letting you know who I am. 

I am Nora. 

I am autistic. 

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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…