0

As April Approaches

As April approaches, it becomes increasingly more difficult to be autistic. Throughout most of the world, April is labeled as “Autism Awareness Month”. People, both well-meaning and not, start “lighting it up blue.” To learn why you shouldn’t light it up blue, read this. If you use to light it up blue, read this.

As April approaches, autistics like me find ourselves completely worn out. We find ourselves constantly having to tell everyone what the problem with “awareness” is. We find ourselves weary and worn, our voices drowned out by allistic parents.

I have a lot of autistic friends. We are all varied, unique people. We’re not high functioning or low functioning, we’re just autistic. We use various methods of communication, every single one valid. We stim. And each and every one of us are autistic.

As April approaches, it becomes tiring. And the thing is, even when April ends, the aggression never ends. So please, have some compassion this April. Don’t rely on your autistic friends to do all the educating, but at the same time don’t speak over us.

As April approaches, it’s easy to fall into the mindset that this is the only time the ableism against autistic people amps up. However, we face ableism every single day of every single year. It isn’t unique to April, even though it is worse in April.

So please, check on us. Make sure we’re okay and taking care of ourselves. Make sure that we’re not wasting our limited energy and time on people who simply won’t listen. Remind us to fight the battles that matter, and let go of the rest. Remind us to mourn the dead, and fight like hell for the living. Because as April approaches, we’re going to need a little extra love.

0

You will be found

Have you ever felt like nobody was there?
Have you ever felt forgotten in the middle of nowhere?
Have you ever felt like you could disappear?
Like you could fall, and no one would hear? 

I find myself looking at the screen, willing my fingers to dance across the keys. I find myself filled with words and emotions, desperately trying to free them from myself. I find myself being overwhelmed by everything. I find the too much simply BECOMING too much, and wanting it to be less much. I find myself trapped behind walls I built for myself and I don’t know how to brings those walls come tumbling down.

There are so many emotions I feel bubbling up inside me. And I feel like I let them define who I am. I feel like they become the filter I view the world through and that they taint every interaction I have. I try to hide the pain. I try to hide the fear. I try so desperately to throw up the walls and push out the world.

I don’t know what it’s like to not be depressed. I have no clue what it would be like to not be anxious. So many people talk about having a before and after anxiety. They talk about life before depression and before trauma. Me? I don’t have that. I’ve never known what it’s like to be healthy. I feel like I’m trapped in a world that I wasn’t prepared for. I feel like I’m in the midst of a planet where I simply wasn’t taught how to cope.

Well, let that lonely feeling wash away
Maybe there’s a reason to believe you’ll be okay
‘Cause when you don’t feel strong enough to stand
You can reach, reach out your hand

I often find myself wishing things could be different. I find myself not relating to people saying they wish they could return to childhood, because I never want to be in that position again. My psychiatric disabilities started as a child. I don’t know how to return to a prior level of functioning when that literally doesn’t exist.

And so, I find myself in the darkness once again. I am desperately searching for the light. I find myself desperate for the peace and comfort that I’ve never known. I find myself trapped inside a prison where I’m both the bailiff and the prisoner.

I find myself scared to hold out of hand, in case someone might actually take it. I find myself further trapping myself because I don’t know how to set myself free. I find myself desperately wanting to be found, but at the same time I try to keep hidden. I find myself not knowing how to be found, and like I’m completely lost.

Even when the dark comes crashing through
When you need a friend to carry you
And when you’re broken on the ground
You will be found

But I find myself slowly learning to trust. I find myself trying to tear down the walls. I find myself letting people help me pick myself up on the ground. My lifelong depression isn’t a flaw in my character. The anxiety dancing through my brain isn’t because I’m broken. It’s merely a side effect of being a human and it’s a part of existing.

And yes, I will be found. I will build a new me, carefully crafted from both the good and the bad. Just because I don’t have a prior Nora to return to doesn’t mean that a new Nora cannot be crafted. I can take the pain, the heartache, the anxiety and turn it into who I want to be.

I may be broken, but it doesn’t mean I’m hopeless. I may be struggling, but it doesn’t mean I will always be. I may be scared to hope, but it doesn’t mean hoping is futile. There’s strength for today, and bright hope for tomorrow. The ones who care for me are there to lift me up. And I will be found.

So let the sun come streaming in
‘Cause you’ll reach up and you’ll rise again
Lift your head and look around
You will be found

Lyrics from “You Will Be Found” from the musical Dear Evan Hanson

0

This little light of mine

“This little light of mine, I’m gonna let it shine” 

As someone who grew up in the church, this is a simple song I know well. Complete, of course, with motions. As a child, I saw it as just a song we sang in Sunday School. As an adult, though, it’s more than just a little song about my faith. It’s how I shape and live my life.

In the Prayer of St. Francis, there’s a line that states “Where there is darkness, let me sow light.”  And I’ve come to realize that letting my light shine isn’t simply about childlike faith. It isn’t merely something that’s limited to being a Christian. 

I mourn the dead, and I fight like hell for the living. I’m outspoken for the rights of disabled people. That is letting my light shine. The world is often dark. The world is often bleak. But I choose to let my light shine. 

Letting my light shine is no longer merely about my faith. Letting my light shine is being a light in a dark world. A voice that sings out against hate. A flicker that stays lit when the world is crashing down. It’s about standing up for what I believe in because it’s right, not because it’s easy. 

I let my light shine because sometimes, all it takes is one light to change the world. 



0

adventures in anxiety!

Blogger’s note: This post was inspired by this post. It’s something I’ve wanted to write for awhile and that post helped me get the words going. This is also an expanded, edited version of a status on my personal Facebook wall.

As someone with lifelong anxiety, there are things I’ve learned that help and things that don’t help. I’m writing a handy-dandy guide on how to handle your resident Nora, who is fueled by anxiety, caffeine, and spite. Other people may have different reactions and feelings about these things. Anxiety isn’t a one size fits all and while these tips are great for me, they may be not-so-great for others. But I’m hoping by writing out what helps for me will help some others.

NOT HELPFUL: “Calm down!”

If I could calm down, trust me, I would. When you’re just telling me to calm down, it further spirals the anxiety because then I get anxious I can’t calm down. I want to be calm. I want to be collected. But my world is spinning and I can’t control it. I already feel like a failure if I’m panicking,

NOT HELPFUL: “Deep breaths.”

Part of the problem is I’m struggling to breathe from panic in the first place. While what I’m hearing is “take a deep breath”, what my brain registers is “you’re not breathing right”. Which further triggers the anxiety when I feel like I am not doing anything properly. And really, when everything thing is Too Much and I am Fading Away,

NOT HELPFUL: “It will be okay.”

I know, logically, things will be okay. I know that deep down. But in the moment when things aren’t okay, it’s more important to acknowledge that then the fact that things will be okay eventually. They’re not okay now, and that’s, well, for lack of a better term, okay. It’s not a bad thing

NOT HELPFUL: “Are you okay?”

Okay has so many different meanings. And if I’m flipping out over something, obviously, I’m not okay. Things are really sucking in that moment and there’s nothing wrong with that. Asking if I’m okay makes me feel like I’m bad or wrong for not being okay…or maybe I don’t even know in that moment what okay MEANS.

Of course, now that I’m saying all these things that aren’t helpful, people are likely wondering “what the hell can I do then?” Here are some actual, helpful things!

Pointed, concise questions. For example, “what do you need to feel better?” is very overwhelming when you feel like your entire world is caving in. “Would a glass of water help?” is a much better question. “Do you need your Zeke?” (Zeke is my comfort object, for others obviously replace with what works for them). “Do you need a fidget?” “Do you need a blanket?”

NEVER TOUCH SOMEONE WITH ANXIETY WITHOUT THEIR CONSENT. I cannot emphasize this enough. When someone is spiraling, unwanted touch can make things so much worse. “Would a pinky hug help?” “May I hug you?” Is a much better approach. Remember, when consumed with anxiety in that moment, that person’s feelings and emotions are what’s important.

“Would you like to watch a movie/beat shit up in a video game/play a board game?” These are concise things that can be done. And while pulling myself out of the “everything is wrong and falling apart” stage can be difficult, sometimes what I need is a little help getting over that hump.

“I’m here for you.” Sometimes, those four words are truly all that is needed. Even if it’s two people sitting in the living room both on their iPhones pretending the other doesn’t exist….sometimes that is all that is needed in that moment. It’s okay to simply be – to watch a movie, to color a photo, to each play a game on their own device.

As I stated earlier, this is what helps me, personally. It’s okay if these things don’t help you. We all respond to anxiety differetly, but my hope is that by sharing what works for me you may find some things that work for you.

0

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.

0

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.

 

0

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

0

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 🙂

0

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.

0

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