6 Word Stories pt. 27

So it’s been awhile… And the worst part is, it’s not like I haven’t been writing my 6 word stories, it’s just that two weeks in a row, I bolted up out of a dead sleep at about 2am on Saturday morning realizing that I haven’t written a blog post. I then immediately fall back asleep, which is less than useful.

I’ve had a long couple of weeks. I started physical therapy, which makes my POTS flare, which means I’m ‘fall asleep sitting up’ exhausted. My heart rate is also in the 150’s which makes me feel like I’ve had 5 shots of espresso one after the other. Luckily, I found a glut of gardening shows on Netflix, so I can just lie on the couch and stare at the TV when necessary.

So with the whole ‘skipping two weeks of posts’ thing, I’m going to leave you with The Best Of March’s Stories. Thanks for reading!

  • I started today with negative spoons.
  • Oh where has my ambition gone?
  • So tired. I blame Daylight Savings.
  • A thousand earplugs are not enough.
  • After too much socializing, it’s naptime.
  • Just for today, I’m not overthinking.
  • It’s hard to describe my feelings.

Well there we go! My last few weeks in 42 words. Sorry for the missed week, but if you ever feel like you’re in 6 Word Story withdrawal, my Tumblr blog, 6 Word Autism is updated daily!

Hope you all have a great first week of Spring!

5 Reasons I Want to be More Like Hawkeye

I don’t know about you, but for the past few days, my social media pages have all been focused on one thing: the Avengers: Infinity War trailer. Of course, whenever a new Avenger’s movie comes out, I always get disappointed, because my favorite Avenger, no, my favorite Superhero, is criminally underrepresented.

If you’ve seen the movies, you may recognize his as the guy with a bow and arrow, who never really gets much screen time. His name is Clint Barton, code name Hawkeye, and I swear I’ve never been this attatched to a comic book character before.

Everyone’s favorite archer currently stars in his own comic book, written by the wonderful Matt Fraction, and he skillfully highlights the humanity of a hero. All the stories take place in between big battles, and builds up Hawkeye as a person I’d really like to be like.

And here are a few reasons why:

1. He’s not Super: Clint Barton is just a person, who is very good at one thing- archery. And while I am only ok at archery, I am also just a person, and I really admire the bravery it takes to go out and save the world armed only with a bow and arrow. Hawkeye doesn’t have a super suit. He doesn’t have super speed or super strength. He doesn’t even have advanced healing. The fact that he is so utterly human is what I love about him. He goes into battle again mutants and gods, and once the world has been saved, he drags himself home to ice his bruises and tape up his ribs. I want to be the sort of person who throws myself into things knowing that I may have to patch myself up afterwards, and being ok with that.

2. invested in his community: In Matt Fraction’s comics, Hawkeye literally goes to battle over his apartment building. Not in a business sense, but to make sure that his neighbors have a safe place to live. Clint is definitely a worrier at heart, but for whatever reason he doesn’t hesitate when it comes to the wellbeing of his community. This is the advocate that I aspire to be. Right now I’m pretty comfortable with self advocacy, which, as I say to make myself feel better, Hawkeye is terrible at. But taking that next step still worries me, and unfortunately, the comics don’t provide a great guide to advocacy. If I were do what Clint did, I would: throw barbeques, rescue people from a hurricane, watch Christmas Specials with the children, and fight off the Mafia for control of the building. I think I’ll take the spirit of Hawkeye and make my own plan.

3. His disability doesn’t run his life: There are lots of Superhero’s with disabilities out there. In fact, after accidental radioactive exposure, disabilities are one of the top reasons that superhero’s are born. It’s like the writers are saying “yes, you’re blind, but hey, at least you have superpowers now!” Canonically, Clint Barton is Hard of Hearing, and he gains nothing super from it. No powers, unless you count reading lips as a power. But I don’t think that he would. He also communicates with ASL throughout the comic (Issue #19 is done almost entirely without spoken English.) I like that since he’s been dealing with disability since childhood, it fits him like a really comfy pair of shoes. Like, if he were to list 5 things that describe himself, Deafness wouldn’t make that list. I still fight my disabilities sometimes, and the comfortable acceptance that Clint has is what my goal is.

4. He gets back up (even if he quits first): We all fall down, even superheroes, and Clint Barton does his fair share. I can’t really blame him, he’s got to have trauma from the constant stream of people dying around him, and sometimes I have trauma days where I don’t have it in me to leave the house. But even on his bad days, hell even on his bad months, he always comes back, and I think that’s a really healthy behavior. No shame in needing a break, right? It would be so easy for Hawkeye to walk away. It’s not like he’s irreplaceable like Captain America or highly recognizable like Tony Stark. He could take his dog and start a new life, one without violence or pressure to save New York, again. And yet…

5. He does his best because it’s important: I said up at the top that Hawkeye is my favorite because he doesn’t have superpowers, but he still goes out there every day and saves the world. And to me, him doing this is almost more admirable than someone who did have powers doing it. Hawkeye does the best with what he has, and he does it because he knows how important it is. I go through stages where I want to save the world. Just like Clint, I know that it’s important, and that me doing my best could really make a difference. But the idea of saving the world is scary too. To quotes a certain other superhero, “with great power comes great responsibility”, and I’m not sure I’m ready for that. I’m hoping that, with time, the fact that I could make a difference will shift from a worry to a simple fact: that it’s important, so I should do it.

So there we are! Superheroes are written to be idols, but I hope I’ve shown how much I appreciate one who is an everyday hero as well. Because that’s what I strive for, making a difference just by being me. And hey, if I can have a dog while doing it, that’s even better!

Hope

I’m back in Physical Therapy!

This is exciting, folks, because after a few more weeks of hip strengthening, I get to move on to the good stuff: Exercise Therapy!

As I think I’ve mentioned before, I have a neurological condition, a type of Dysautonomia call Postural Orthostatic Tachycardia Syndrome. I challenge you to say that three times fast. It’s impossible, which is why we tend to refer to it as POTS.

It’s a problem with my Autonomic Nervous System, which causes body functions like heart rate, digestion, and blood pressure to function incorrectly. My biggest issue is that my body doesn’t pump blood efficiently, and often times I end up with too much blood pooling in my legs and feet, and not enough blood in my heart and brain.

Do you know what happens when there’s not enough blood in your brain?

You faint. And in the case of people like me who have POTS, you faint a lot. I have trouble stand or walking for any period of time, because my heart rate skyrockets, I get incredibly dizzy, and if I don’t find a place to sit fast, you guessed it, I’m on the floor.

So what does this have to do with Physical Therapy?

Regular exercise is one of the best things for POTS, but it’s problematic because exercise raises your heart rate, and raises your fainting risk, and no one wants you to faint on a treadmill.

I’ve tried to start exercising on my own before, with little success, which is why I’m so excited to start the Levine Exercise Protocol with my physical therapist.

The idea of it fills me with hope.

I’ve been severely disabled by POTS for years now, and if exercise therapy can get me healthier and keep me stable, there’s so many things that I can do!

I was an active person. I was a running-jumping-climbing trees sort of kid, and as an adult, there have been so many things that I want to do- so many things that I want to try- if only POTS wasn’t holding me back.

Jess and I have been making a list, which includes but is not limited to: hiking, rock climbing, curling, ice skating, disk golf, longboarding, and gardening.

I’ve been vibrating with excitement. The whole idea of exercising freaks me out though, because raising my heart rate is so uncomfortable. But the idea of all the things that I could do is starting to smother that anxiety.

I’ve made a good life for myself that matches my abilities. I knit, I play board games, I read. And for the most part I’m satisfied with all of these, although being so sedentary makes me sad sometimes. On nice days I so wish that I could be out in the sunshine, doing more than just sitting.

And now that there’s a light at the end of the tunnel, I’m letting myself hope. It won’t fix me, but even raising my physical abilities slightly opens so many doors.

I know from experience that this is going to be hard. I’m going to be utterly miserable in the beginning, and I won’t want to continue, which is partially why I’m putting my feelings out there for the whole internet to see. Hopefully coming back here and seeing my optimistic rantings can blast through the sucky parts so I can remember how excited past me was.

So. To crabby, exhausted, future me: remember the future that we want, and most importantly, have hope!

7 Internet Boredom Busters

Guys, the internet is huge. Way huger than the movies of my childhood (War Games anyone?) had led me to believe. Yet, I often find myself sitting in from of my computer, bored. And a quick look at browser history shows that I only visit around 20 sites on a regular basis. I guess that explains some things. So I decided to dig deep into my past, to see if I could dig up some of the stuff that used to keep me glued to my screen 24/7. I had so much fun revisiting these, so I hope you don’t mind if I share them with you!

1. Fall Headfirst into TV Tropes: If you consume a lot of media like I do, you know that often times it can be formulaic. The hero goes on their quest, the guy always gets the girl, and gay characters are killed off to force an emotional reaction. These are Tropes, and TV and movies are full of them. TV Tropes is a massive wiki that catalogues every trope you can think of, and aims to stimulate commentary about media. I suggest looking up your favorite show or movie, and just start clicking on links! I always tell myself that I’ll only spend a few minutes there, but it often turns into an hour.

2. Play old browser games: The late 90s and early 2000s were the golden age of flash games. I spent my middle school years obsessed with games that were so simple that they only required the up/down and left/right arrows. Most of my time was spent on a site called Neopets, which was sort of like having an advanced Tamagotchi. You had pets that you had to take care of, and the easiest way to earn the money to do this was by playing games. And play them I did. My favorite was Meerca Chase, a Snake clone, that I still love today. My middle school muscle memory still exists, and I’m still pretty good! Other favorites of mine include Fancy Pants 2, and Max Dirt Bike, which I still think have excellent replay ability. In the current era of games that cost  $50 to own and millions to produce, going back to a simpler time of free browser games is really refreshing.

3. The Wikipedia GameHow, you ask, can you make Wikipedia into a game? Well let me tell you. The Wikipedia game has puzzle aspects, tests your word association skills, and is even a dexterity game, because you need to be a quick clicker. The premise is simple, get from one random Wikipedia article to another, in the fewest clicks (or shortest time) possible. I spent a lot of time in college when I was supposed to be studying playing this game. I claimed that since I was using articles related to my studies, it still counted. That was a lie.

4. Start a Web Comic from the beginning: The 2000s were also the birth of highly popular Web Comics, which are definitely their own unique type of media. It didn’t matter if a comic was serial or a collection of one-shots, they made digital art and media incredibly accessible. And these things can run for years. I started reading Questionable Content in high school (which I’ve realized doing the math was 15 years ago?!) and it’s still running strong today. Like shows like Seinfeld, it’s a comic about nothing- 15 years of nothing at this point, but I’m kind of invested. XKCD is for a the nerds out there. It focuses on math and science humor, so expect lots of jokes about dinosaurs, statistical curves, and astrophysics. Balderdash is an beautifully illustrated serial about two witches, and while it doesn’t have as much backlog, what it’s got is worth reading.

5. Learn something!: You would not believe how many ways there are to learn something new online these days. Learn to code? Check!, Robotics? Check! World Mythology? Anatomy? Study Skills? Check, Check, Check! I find that these sorts of courses scratch a learning itch without any pressure. I find acquiring knowledge to be very relaxing, which I’m aware is not universal. So if the idea of learning the ins and outs of Biology makes you quake in your (hopefully) comfortable shoes, then run away now! Or don’t. Who am I to tell you what to do?

6. Give back with one click: So Free Rice has been around for quite a few years now, and it was a Big Deal when it first came out. The premise was so simple, answer a vocabulary question, and a person in a developing country got some rice! I haven’t thought about it in years, and went checking, happily it’s still up and running! You can answer all kids of trivia question now, and they’re generating the funds to donate to The World Food Program with the ads on their website, so they’re even self sustaining! If you still want to expand your vocabulary but would rather help dogs and cats in need, Freekibble uses a similar model.

7. Get sucked into a web series: What can I say about YouTube? It’s provided the world with endless cat videos, and that’s enough. Post over. But seriously, gone are the early days of shaky cameras and fart based humor. No, modern Web Series’ are a thing of beauty. The first series I want to tell you about is The Lizzie Bennet Diaries. And I’ll tell you right now, I’m not a die hard Austen fan, I’ve never read Pride and Prejudice, and to be honest, none of that matters. Besides having more than 100 episodes of family and drama, it bring the story of Elizabeth Bennet into the future perfectly. You’ve heard me talk about board games before, and Tabletop was my introduction to modern gaming. It’s hosted by Wil Wheaton (Wesley Crusher on Star Trek: TNG!) and is 5 seasons of him and a rotating group of actors playing board games. It’s really nice to see how a game is played before you jump into it. Also, they’re all hilarious. Last but not least How it’s Made is the stimmiest show on YouTube, 100% recommend if you like visual stims.

So there we are! Hope you found a corner of the internet that you’ve never seen before, and if you have a boredom buster you think I should try, let me know! Meanwhile, I’ll be over here playing Meerca Chase. For the 127th time….

Let’s Be Practical

It all started with a Buzzfeed quiz: Eat Your Way Through Europe and We’ll Reveal Your Dream City! I got Barcelona, and while I was reading through the blurb describing warm oceans and sea breezes I thought to myself “you know, I’d love to see Barcelona some day.”

But let’s be practical, I probably won’t.

I think the most heartbreaking part of being diagnosed as an adult is that I often still think that I am neurotypical. And since I’ve spent 28 years being bombarded by the idea that I can do anything I want, I see no reason why I can’t. As long as I Try hard enough.

I think we all know though, that autism doesn’t work like that. Now I’m not implying that we shouldn’t try! Yoda said “do or do not, there is no try”, and I disagree with the little green bastard, because I think “try” is not a placeholder for “do”, I think trying is an action in its own right.

And because of this, I subscribe to the school of Realistic Trying. To me, this means that I’m never going to stop pushing forward and doing things, but I’m going to be realistic about how I go about it. Let’s take Barcelona. Barcelona is in Europe. In Spain. I live in St. Louis, which is 4644 miles away, smack dab in the center of the United States. And thanks to the myth of Trying Hard, a large part of my brain still thinks that travelling that far is doable.

Let’s make a quick list of barriers to travel:

  1. I have a routine, and if it is not followed, it will eventually lead to a meltdown.
  2. I can’t deal with unpredictability, and travelling to a new continent is full of them.
  3. I am a picky eater, and my precariously balanced diet depends on me being able to eat safe foods.
  4. I get overwhelmed by people. I’m pretty sure a transatlantic flight would be the end of me.
  5. Sensory Overload. Enough said.

Yet my brain tells me that I Can Do Anything, and my common sense can’t shut it up. My brain tells me to Follow My Dreams. Common sense suggests maybe finding a more realistic dream, but this is quickly shut down. I Can Do Anything, my brain proclaims.

I can’t do anything.

I can do some things, and that list is always growing. This is what I need to focus on, because I logically know that I can’t just push through a meltdown with the power of Trying. What I can do, and what I need to do, is to get to know myself better. Find out where I can make little adjustments without compromising my mental health.

So on days when I try something new, I keep my schedule as close to normal as possible, even if I’m not at home. I talk myself through things that might be unpredictable, so I can be ready for them. I pack myself just-in-case food, and I know where the bathrooms are- just in case I need a break. And for the sensory worries? I never leave home without ear plugs, stim toys, and distractions.

I wish my brain thought those little adjustments were a success, but I think we all know by now that that it doesn’t. Because my dreams didn’t come true, it tells me, I must not have tried hard enough. Who cares about small victories? I’m not lying on a beach* in Barcelona, so I’ve failed.

Let’s all give a rousing Shut Up to my brain, because yeah, maybe I haven’t made it to Europe yet. Maybe I never will. But hey, let’s be realistic, I’ve got Nashville, and Chicago, and Kansas City, all a hop, skip, and a jump away, so let the road trips begin!

*I would never do this anyway. Wet sand is sensory hell for me.

 

 

 

4 Feelings That Suck

Sometimes you just feel like crap. Such is the human experience. I think that the goal of life should be making sure that good things are the majority, and the crappy things are the minority. But even if your life is mostly good, even if your feelings are largely positive- some of them still suck.

This post isn’t about changing these feeling. That’s a totally different post. This is just acknowledging that feeling like this are real, they exist, and that they are universal.

Plus, I find screaming into the void to be very therapeutic sometimes.

1. Getting lost: Realizing that you’re lost immediately turns you back into a 5 year old. All of a sudden, everything around you is 10 times taller and you’ve shrunk like Alice after she drank that potion. I get lost a lot. I’m not ashamed to admit it. Between having a terrible internal compass and stopping every 5 feet to touch something shiny, I’m a pain to shop with- just ask my wife. She always finds me eventually, but not before the panic that I’ll never see her, my home, or anything familiar, ever again sets in.

Honorable Mention for being lost in a more existential way as well. That also sucks.

2. Losing a special interest- I don’t know about you, but I’ve had special interests for as long as I can remember. And with the exception of Star Wars, none of them have lasted. And sometimes that’s ok. When a special interest gently fades to the back of your brain, it’s like it’s lived a good life, and now it’s time for it to go. Especially if it’s making way for something new. But there are other times. Times when you realize that something you love is being pulled away from you, and while you desperately try to hold on, all you can do is watch as it slips away. For me, I spend so much time with my special interest, that losing them is like losing a constant companion.

Honorable Mention for accidently gaining a special interest that you didn’t want. That also sucks.

3. Everyone understanding something but you: Smile and nod, just smile and nod. Because in situations where for whatever reason everyone knows what to do except you, you’ve got to fake it. How do the public collectively know what to do in these situations anyway? I find being in social situations like this comparable to everyone in the room doing a dance that you don’t know- usually I compare it to the Macarena- and they’re all having too much fun dancing to explain to you what’s going on. So instead you mentally beating yourself up for being too dumb to do something that everyone else can easily do, you tell yourself over and over that you don’t belong, and you’ll never to try again, because this feeling isn’t worth it.

Honorable Mention for spelling something wrong for years. That also sucks.

4. Being Misunderstood: Communication is hard for everyone, but I know that since I sometimes communicate in a somewhat non-standard way, I seem to run into misunderstandings more often than most. There’s nothing worse than getting halfway through an interaction, and then realizing that you’re having two different conversations, or realizing that you’re not being understood at all. Besides being really frustrating, it’s often guilt inducing, knowing that you’re bringing your best communication game, and it’s still not working. It’s like you’re grabbing at a possibility to connect, and you’re just missing it.

Honorable Mention for having your tone of voice be misinterpreted. That also sucks.

So this one was a bit of a…downer. Sorry.

I hope you know that I’m not trying to imply that these feeling are always present, or that wallowing or over-analyzing is the way to go.

I know that I’ve found it therapeutically useful to recognize when I feel like this, and acknowledge it, so it can pass. I also know that when I can share them with people who might have similar experiences, it can turn feels that suck into feelings of connection.

So go! Watch your favorite show, hang out with your favorite people, pet a puppy! Hell, pet 10 puppies.

Take good care of yourselves.

A Person is a Puzzle

So, thanks to certain organizations who shall not be named, I have a visceral reaction to puzzle pieces. I hate everything that that’re supposed to represent, and even more, I hate that they’re everywhere. On t-shirts and buttons and bumper stickers, placed there by people who think that by having a “I love me _______ with autism!” magnet that they’re somehow helping. Some of them are. Most of them aren’t.

Here are a few explanations of what people think the puzzle piece represents:

  • The mystery and complexity of autism
  • “(To) show that autism caused suffering and that children with the disorder would not “fit in” to society.”
  • “The puzzle piece meant they did not fit in.”
  • “(It) symbolizes hope for defeating the disorder.”

None of those things sound good to me. Acting as though autistic people are a “mystery” seems to me like a cop out. It sounds to me like there’s no point in trying to understand us, because we’re too complex. And while I think most of us have suffered at one time or another, suffering is definitely not something that defines me. I’d say that when I don’t “fit in”, it is often because people aren’t willing to get to know me. And I don’t want to defeat autism. It’s a large part of who I am, and I’d rather understand it and accept it into my life than get rid of it.

It think it’s a shame that the puzzle has come to this. I love puzzles, and think that the idea of people being made up of pieces is really accurate. Which leads us to….

I’m a Unitarian Universalist, and one thing about us is that we draw from a lot of different sources, especially during services. This morning, a piece was read called “A Person is a Puzzle”, and I immediately knew that it was something that I wanted to talk about. This is the sort of puzzle piece imagery that I want.

We are all puzzles. We are all whole. We are all enough.

 

A Person is a Puzzle

By Mark Mosher DeWolfe

A person is a puzzle. Sometimes from the inside, it feels like some pieces are missing.

Perhaps one we love is no longer with us. Perhaps one talent we desire eludes us. Perhaps a moment that required grace found us clumsy. Sometimes, from the inside, it feels like some pieces are missing.

A person is a puzzle. We are puzzles not only to ourselves but to each other.

A puzzle is a mystery we seek to solve—and the mystery is that we are whole even with our missing pieces. Our missing pieces are empty spaces we might long to fill, empty spaces that make us who we are. The mystery is that we are only what we are—and that what we are is enough.