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this silence gets us nowhere, gets us nowhere way too fast

 

I remember several years ago being asked what a life without trauma looked like. What a life without depression looked like. What it would look like to be healed. That’s when I first had the terrifying realization – I have no idea what it looks like. I have no idea what life without trauma is like, as my trauma is developmental. I have no idea what life without depression looks like, because I don’t have a frame of reference for that.

I often see people say they want to be a child again, because they didn’t have any responsibilities and being a child was carefree. I’ve always been chronically ill. I’ve always been depressed. Being a child again would put me back in a hellhole and isn’t something I want to repeat. 

I don’t really want to talk about what my trauma was, but the fact it exists should be enough. It doesn’t change the fact that there isn’t a before trauma and after trauma for me – there’s just trauma and after trauma. There’s just learning how to build a life I never had. Some people rebuild – some people build from the ground up. I find it difficult to physically speak about the way these things affect me. 

I often shut down. Shutting down, turning off my emotions, retreating into myself was a way I coped growing up. Either that, or completely melting down. At one point, this is what kept me safe. At this point, my survival strategy is destroying me.

…I sit here locked inside my head, remembering everything you said. The silence gets us nowhere, gets us nowhere way too fast. The silence is what kills me, I need someone here to help me. But you don’t know how to listen, and let me make my decisions…

It’s funny – the same things that keep me going are the same things that destroy me. I feel like so much of me is shaped by my past, so much of me is shaped by what I’ve been… that there’s no way to know who I am when freed of those aspects. I desperately want to know so I’m not merely fueled by anxiety and caffeine. But when your trauma is in your early years, when your depression is lifelong…it’s literally impossible to know what a life is like outside of that.

Sometimes in Facebook groups, I see people ask if they miss the person they were before trauma. If they miss the person they were before they developed psychiatric disabilities. And that isn’t a frame of reference for me. Which I think is part of the reason recovery is so difficult for me – it’s building something entirely new and unknown. And while it’s a lovely prospect and something I want… at the same time, it scares the living crap out of me.

I don’t know what it’s like not to be depressed. I don’t know how not to be anxious. It’s always just been how things are. And while one one hand, that’s not a bad thing… it just means that my life is different from some people’s. It doesn’t mean I cannot one day find a life without depression, anxiety, and trauma… it just means forming the building blocks to THRIVE instead of merely survive is somewhat different than other people.

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Autistics Speaking Day 2018: Words Can Be Hard

It feels like there’s nothing to say. It feels like so many other people have used the words and used them so much better than I can. There are things that certainly need to be said, but I don’t even know if I’m the right person to say them. I don’t know if I’m qualified enough. I don’t know if I’m smart enough. I don’t know if I’m eloquent enough. Needless to say, I struggle with words often (which is kind of funny for a blogger, I guess).

But then again, maybe for autistics speaking day I should write about how I sometimes don’t have words. Because that’s something I’m currently facing in my life. I feel like sometimes  I gloss over the most difficult parts of being autistic – I talk about how I’m okay with it but I don’t feel like I talk with about what I struggle with as candidly. And so, here I am. Autistics speaking day. Talking about how speaking (or writing) is sometimes hard.

Something that has been noted in my life is that often when faced with having to deal with my emotions – I shut off. I can talk your ear off about Anime Fargo, video games, anime, or just about anything that isn’t related to my feelings or emotions. I will happily babble about what’s easy and advocacy. But when it comes to what’s real, when it comes to what’s raw, when it comes to my struggles… that’s a lot harder. It’s so easy to shut off to try to not deal with those things anymore.

But words. Sometimes there are words in my head, and they don’t match the words that come out of my mouth. I switch my words, I say the wrong thing – it’s almost like autocorrect in real life. The words just aren’t always right, and it’s difficult to accept that and be okay with it. But then when it comes to what’s most important in my life… allowing myself to say those things can be hard. I can often write about them, but verbally saying them? There’s a bit of disconnect there.

And here I am. Autistics speaking day 2018. As usual, I shut down some today when faced with emotions. I’m trying to learn how to navigate these and I’m trying to learn how to control it. It’s difficult and it’s painful – but it’s a part of life. Things don’t always have to be perfect. The words don’t always have to be right. I’t’s okay to struggle, and it’s even okay to not have words at times. Learning to accept that has been difficult for me, but I think in the end, it’s worth it.

 

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Anime Fargo!

A small group of people smiling at the camera. Text above the photo states “Welcome Back Anime Fargo! Class 2-A. September 18-20 2015. Doublewood Inn, Fargo.”

 

2016 was my first Anime Fargo. 2017 was my first year on staff, but I had to miss the convention because my body decided that it was the PERFECT time for mononucleosis. 2018 was my first year both on staff and actually at the convention the entire weekend. Anime Fargo, and helping plan it, is very important to me. I’d like to share some of the reasons why.

I like helping people. I like making things better for people. I like making the world a better place…even if it’s just a weekend at a small anime convention in North Dakota. The extent of my disabilities make it so there’s a lot I simply cannot do. Finding conventions gave me something to do.

Convention staff takes care of each other. Anyone who knows me knows I’m fueled by anxiety and caffeine. I get frazzled somewhat easily. Con staff looks out for each other. We help carry each other’s burdens. We become like family. Sometimes we’re dysfunctional and sometimes conflict happens. But in the end, we all band together to make an amazing convention happen.

I don’t like going outside my comfort zone. I like things to be just the way I like them. But at an anime convention? I’m forced to go outside of my comfort zone and do things that aren’t necessarily what I’d like to do. And that’s a good thing. I can prove I can do things that are uncomfortable. I can prove I can be successful and doing things I don’t like.

As you can see, our staff has grown. And our convention has grown as well. I’ve attended several anime cons over the last several years. But Anime Fargo will always be my favorite. Anime Fargo will always be special to me. I’ve found friends  through them. I’ve learned I can do things I never thought I could do. I’ve realized that my wisdom and passions can be channeled into something useful. I’ve found a place I belong…and that’s an incredible feeling.

 

A much larger group of people, showing how our convention has grown! Text states Anime Fargo V: Galactic Adventures 2018

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A Spoonie Review

My friend Brittany and her mom wrote a cookbook and were looking for people to review it. I was glad for the opportunity. Usually not one to review, I made an exception for friends.

I am not known for my cooking ability. I’ve melted blenders. Exploded Jello. Exploded mashed potatoes. The last time I tried to make homemade fries they were half crunchy, half mushy. And then there’s the infamous enchilada lasagna. Cooking is not my forte.

My roommate helped me with making the food (and of course, eating it) because I need help in the kitchen. We made grilled peaches and a baked chicken from  the cookbook.

 

What did we think of the cookbook?

 

The anecdote. Stories from Pam and Brittany’s lives feature in the cookbook, which helps gives insight on why that recipe was important to them. There’s modifications in so many of them – need a vegan option? Need a gluten free option? It tells you how to do it!

I really liked this cookbook. We’ll be making, and reviewing, some more recipes from it so stay tuned. I’m so proud of my friend for publishing a cookbook, and so happy to be able to share with you from it 🙂

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when friendships dissolve

There is a very real, very painful form of grief that I don’t think we talk about nearly often enough. We talk about the grief and loss we feel when someone close to us dies. I’ve written extensively about that grief myself. But a kind of grief that often gets forgotten is the grief when a once close friendship dissolves.

Friendships can end in many ways. Sometimes they gradually drift apart. Sometimes the ending is abrupt and painful. Sometimes you can look back and see all those warning signs you missed. Sometimes you can look back and realize you knew it was coming all along but you just didn’t want to accept it.

Losing friendships is hard. It isn’t always one big dramatic falling out – although sometimes it is. Sometimes it is a bunch of little ones leading up to the catalyst that tears the friendship apart. But coming to terms with the loss of someone who was once very close to you? It’s very real. It’s still very much a grieving process.

I haven’t blocked everyone on Facebook that was once a close friend but now isn’t. So sometimes I still see the memories on Facebook. And just the same as those who have passed away, they still take my breath away. I still find myself wistfully thinking of the memories and the fun times we once had together. I find myself remembering the late night talks, the inside jokes, what spurred that post… and it’s overwhelming.

There are certain things that will always remind me of friends who have died. There are also certain triggers for friendships that have fallen apart. The pain is still very real. The memories are still quite strong. And there’s still the occasional thing that takes my breath away – a certain song, certain ways people act, etc. I still “see” my former close friends in these things the way I see my friends who have passed away.

The grief is different, yet similar. I have to allow myself time to heal and move on. Sometimes it’s from stepping away from things that reminded me them for awhile – and that’s fine. Somethings I haven’t watched since certain friends died, some things I haven’t been nearly as invested in since certain friendships fell apart. The stages of grief apply in a broken friendship the same way they do when someone dies. Please note: any names used in this post have been changed for privacy and are actually multiple friends rolled into one persona.

Shock and Denial: How did this happen? Why isn’t this friendship happening anymore? It was a mistake, right? No. They’re still my friend. This isn’t real. What’s happening? What happened to our friendship? It can be fixed, right? So many questions, so many feelings, so many thoughts run through your head.

Pain and Guilt: For me, especially, I find myself blaming myself for every little thing. Why did I call my friend out on that one thing, and not just let it slide? Why didn’t I reach out more? Why wasn’t I a better person? It’s all my fault, right? Why wasn’t I a good enough friend? I find myself putting all the blame on myself when this happens, and refusing to acknowledge that it’s a two way street and we both played a role in the friendship dissolving.

Depression, Rejection, Loneliness: I find myself falling into a funk, for lack of a better turn. I’m scared to make new friends because I’m scared of another painful ending. I realize what I’ve lost and the magnitude of it. I still find myself thinking “Oh my god, Caitlin would love this!” when seeing certain things on the Internet or reaching for my phone to send Hailey a text. I find the overwhelming sadness and mourning for the relationship we had when times were good settling over me. I mourn what we had, not what our friendship became. I find myself thinking of the times Caitlin and I laughed together, and that’s fine. I find myself obsessing over the fights Hailey and I had, and that’s fine, too. It isn’t as always simple as being talked out of it, and only time will heal these wounds.

The Upward Turn: Things start getting easier. The depression lifts. Certain things are no longer painful and I  am able to enjoy things we once enjoyed together by myself (sometimes with old friends, and sometimes with new friends).  It’s still hard, but I’m slowly finding my way toward recovery and becoming the person I am without that once important friendship.

Reconstruction: I’m building my life without them. I still love them, I still care for them. I wish them no ill will, even if I did at one point. I still miss them, but I’m able to start moving on with my life. I find myself free of grudges and I find myself starting to find happiness again.

Acceptance and Hope: Seeing their name around (if I haven’t blocked them) no longer makes me angry. I’m able to move on with my life, and hope they can move on with theirs. I find old and new friends to surround myself with and I accept the path that let us down this road. I’m able to think of them without overwhelming sadness – although I do still get sad at times. I’m able to realize that what’s done is done, and can’t be undone.

Note that the stages are fluid and don’t have to happen in any order, and you can loop back to them. 

 

Losing friends is hard. A friendship falling apart can be traumatic and you can grieve it. The mourning is painful and that is normal. Realizing that what you had was beautiful and what it became was not is fine. I really wish more people felt comfortable talking about how hard it is to lose a friend. I really wish there was more acknowledgment on the soul-crushing grief when your best friend isn’t your best friend anymore. Because it hurts and it’s painful. And it’s very real.

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Suck it, ableism

If you haven’t heard about the controversy around plastic straw bans, it’s quite possible you live under a rock but I’ll try to sum it up for you. Plastic straw bans are sweeping across the country. And a lot of us are not okay with it. There’s so many things I could say about the ban, and I have so many feelings. But I am going to try and focus on telling people why the proposed solutions don’t work. Everyone else has done so many things explaining why reusable straws don’t work, and there are some links attached for further reading at the end of this post.

I have seen many people say that straws should be available on demand, and at first I was okay with that. But then I thought abut it some more. As a disabled person, do you know how many times I’ve asked for something and have been denied it, because someone thought I didn’t really need it? By putting the ball completely in our court, you are setting us up to be gaslit. You are setting us up for gatekeeping. And you are automatically setting us up to be denied what we need.

I have seen people say “well, bring your own plastic straw if you need one”. While currently, the Santa Barbara ban only applies to businesses, it would be naive to think that it won’t expand to individuals. Disabled people have been telling you, since the ban was announced, that this would happen. Why haven’t you been listening to us?

I have seen people say that if people truly need plastic straws, they should be prescription only. Why is that a problem? Disabled people are already constantly fighting their insurance for things they need. For example, I have friends who need medical supplies for their condition but those supplies are denied by their insurance. Why are we adding something else to an already broken system? What if insurance decides not to cover the straw? What if they don’t give enough straws?

And most of all? Milo Cress, the nine year old boy whose report is often citied doesn’t want a straw ban. The policy he advocates for? Just ask. Ask. I’d like to ask the able bodied people: why is it bad for the server to ask if you want a straw? Why should the burden of saying we need a straw fall on disabled people? Isn’t the server asking, the very policy Milo was advocating for from the beginning, a decent solution? Why are the solutions that Milo himself, now 17, are offering and the solutions that disabled people are offering not listened to… but everyone else is supposed to be listened to? I’d like you to think on that.

People have asked what people did before plastic straws. The answer? They died. In fact, bendy straws were created for disabled people. We are why they exist. Plastic straw bans hurt us. For a lot of us, reusable straws aren’t safe. Banning plastic straws is flat out eugenics and there’s no way to candy coat that.

 

For further reading, check out the posts here

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Despite everything, it’s still you

If you know me at all, you know I love video games. One of my favorites is a little game called Undertale. Now, I am going to write this mostly spoiler-free because of the nature of the game. If you want me to info dump spoilers – I will gladly do that in private. But publicly spoiling the game will  have the masses after me because many believe it is best played knowing as little about it as possible. If you haven’t played it, I highly suggest it. It’s available on Steam for Windows, Mac, and Linux. There are also Playstation 4 and Playstation Vita ports of it, with a Nintendo Switch port coming out later this year.

In Undertale, you play as a child traveling through the Underground. A lot of things and stuff happen throughout the game. Toward the end of the game, you look in a mirror and the text displays “It’s you. Despite everything, it’s still you.

That line alone is my most powerful takeaway from the game. I love Undertale and it’s easily in my top ten favorite video games, if not the top five. The music, the general feel of the game, the way you can tweak your playthroughs… it’s a beautiful, fantastic game. But then there’s that line. And for the most part, the line is always there

It’s you.

Despite everything.

It’s still you.

There’s a lot of things that have happened in my life. My health is horrible. I have lived through many awful things. Life hasn’t been easy.

But despite everything, it’s still me.

Things will get bad. Things will be hard. Life is often a struggle. I’ve lost people I dearly loved, like Beth. I’ve lived through abuse. My health will continue to be a hot mess.

But it’s still me.

There’s a lot of things I can’t control. Life often spirals and turns and twists into a hectic mess – sometimes beautiful, sometimes ugly, but it’s life all the same. But despite all the things I can’t control, I’m me. I’m still me. The “me” I am changes and morphs due to my situation – sure. But I am still Nora. I am still me.

Despite everything.

I’ve often said I’m like a bouncy ball – I’m resilient as heck. I get thrown down, I bounce back up. Sometimes I may roll away and sometimes I may need help getting back up, but I still bounce back. And I’m still me when I eventually bounce back.

Despite everything.

The entire world often seems determined to push me down. I make choices – some good, some bad. Some I’m proud of, some I regret. But at the end of the day, when I’m preparing to wind down and look at the future – it’s still me.

And the same goes to you.

The world often sucks. Things are often outright hard. You’ll make decisions that you’ll regret, and you’ll make decisions that you’re proud of. Sometimes you’ll be standing there, firmly telling the world that it’s not your time to move anymore. But yet. At the end of the day.

Despite everything, it’s still you.

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i don’t know what it’s like to not be depressed

I’ve had depression for as long as I can remember. It’s a part of me. It’s all I’ve ever known. I actually don’t know what it’s like not to be depressed. Which is a really weird sentence to type. A lot of people think I’m a chipper, upbeat, happy go lucky person. But the thing is, that’s the facade I use to cope and to get through life.

A victim of child abuse, I learned to put up a facade to keep myself safe. Showing emotion, allowing myself to be vulnerable… letting people in to my deepest, darkest moments? Terrifying. I learned to shut off my emotions and act like everything was okay, because it’s what I needed to survive.

I’d have frequent meltdowns because I didn’t know how to cope going up – as an autistic, depressed, abused child I simply didn’t know what to do with my feelings and they overloaded. As I got older, I learned instead to internalize everything. I act like everything is okay with the world so that I can pretend things are okay. The truth is, they aren’t.

I’ve seen so many people say they wish they could shut off their emotions. I wouldn’t wish this upon anyone. I shut off my emotions because I can’t cope with them, but it’s only a short term fix and eventually blows up in my face when I have to cope with it. Because I’ve spent so long shutting things off and acting like my problems don’t exist, I’m now struggling to come to terms and even talk about things.

I’m fueled by anxiety and depression, a bundle of nervous energy. There’s often so many thoughts and words flying around in my head that I don’t know how to slow down and untangle them. I wish I hadn’t started shutting off my emotions. I wish I had been taught how to cope with things, instead of having to finally learn how decades later.

I literally don’t know what it’s like to be depressed. And it breaks my heart. I don’t know what it’s like to not be this way. So many therapists and doctors have asked me what I thought it would look like not to be depressed, and the hallowing truth is?

I actually have no clue.

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Can you hear the prayer of the children

Y’all. 

What’s happening at our borders isn’t okay. 

Y’all realize Jesus was an illegal immigrant too, right? Y’all realize he was fleeing his death? Y’all realize Jesus wasn’t white?

I don’t give a crap what your feelings about illegal immigration are and I’m not open for that debate here. Ripping children from their mother’s arms is wrong. Caging children like animals is wrong. 

Why the heck are we standing for this? Fellow Christians, why are we letting our dogma of love be fueled by a doctrine of hate?

We have to do something. Jesus wouldn’t be standing for this

so why the heck are we?

Adding lyrics from a favorite choral piece, as I feel it’s quite fitting. 

“Can you feel the heart of the children

Aching for home, for something of their very own?

Reaching hands, with nothing to hold on to

But hope for a better day, a better day

Crying, “Jesus, help me

To feel the love again in my own land;

But if unknown roads lead away from home

Give me loving arms, away from harm.”

Can you hear the voice of the children

Softly pleading for silence in a shattered world?

Angry guns preach a gospel full of hate

Blood of the innocent on their hands

Crying, “Jesus, help me

To feel the sun again upon my face;

For when darkness clears I know you’re near

Bringing peace again.”

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This year, I’m tired.

I keep trying to write something for “Autism Awareness Day”, or what my fellow autistics are trying to change into “Autism Acceptance Day”. I’m trying to write something articulate, something profound, something that will challenge people and make them think. I have so many words circling around in my head, but trying to get them to my keyboard is hard.

I feel like the things I say are controversial, and they shouldn’t be. It shouldn’t be controversial to say don’t abuse us, and yet it is. In the past week, I’ve read grizzly stories about abuse toward autistic children (I am not sharing the details. They’re unnecessary. But suffice it to say they’re horrific). I’m tired of defending children’s right to exist.

I’m tired. I am so tired, and I am so worn out. Advocacy is my passion, activism is what gets me pumped. I’m tired of having to fight for my right to exist. I’m tired of telling people that their awareness campaigns are acutely harmful. I won’t stop – it’s impossible to shut me up, but dammit, I’m completely worn out.

And so. This year I’m asking for compassion. For understanding when my words jumble. For supporting when I burn out . 

All I’m asking is for you to listen to our voices. All I’m asking is for you to amplify our voices. We’re telling you what we need. We need acceptance, not awareness.  We need you to help us fight against rampant ableism, because we’ve been doing it for years and we’re ALL TIRED. Because we’re autistic, we’re silenced. And that’s not okay.

This year