asperger

NEWSFLASH: Adults have SPD too

This post contains information that NEEDS to be said. Warning: the following may cause epiphany, sudden awakening of the soul, and Oprah’s “ah-ha” moment. Proceed with caution.

Approximately 93% – I just calculated that statistic in my mind – of all information on sensory issues, both in print and online, are geared towards children.

For a while, that knowledge left me feeling like this:

NOT SURE IF FRY

One of the main reasons I started this blog was due to the near absence of information and resources for adults with SPD on the web or in books. The only exception to this would be a few blogs, and Sharon Heller’s Too Loud, Too Bright, Too Fast, Too Tight, which has become the bible for sensory-plagued adults. Unfortunately, SPD adults often find ourselves reading sensory books geared towards children, and attempting to relate the information to our adult lives. It can be awkward.

potty training

not relevant

Like many neurological disorders, sensory processing disorder does not go away with time.

A fun fact is that according to many medical “professionals,” children with sensory processing disorder just learn to live with their problems, or they simply grow out of the disorder.

At age 13, many people – including myself – were turned away from occupational therapists for the sole reason that we were too old to be treated for our sensory issues.

I remember asking my mom, with confusion, “What’s the difference if I’m 12 or 13? I still have the same disorder. I still need help for this.” Momsy didn’t know what to say, and she couldn’t have known.

Here is what I know: growing out of something is for clothing. People grow out of sweaters. People do not usually grow out of neurological conditions. They manage it and – in the case of SPD –  learn ways to live within their specific limitations. SPD can regulated with various therapies (occupational, physical, or psychological), but there is no cure for it just yet. However, this leaves us SPD adults with many problems.

same person

It leaves us feeling a strange sense of being “unwelcome.” Adults are not the target group, if you will, for awareness and research. SPD adults are very much ignored and neglected by the medical community. We often feel a sense of guilt for even asking for/seeking out help from professionals. We are given this look when we mention SPD to our doctors:

wut

This is not Hogwarts, my friends. SPD cannot be sent away with the flick of a wand, nor does it magically vanish when we turn 18. It is not fair or right that adults with neurological conditions such as sensory processing disorder are left in the dark simply because they are adults.

As an adult with SPD, I can assure you that my sensory problems are here to stay (for now). I’ve overcome many of my sensory struggles from my childhood – yes. However, newer and more overwhelming challenges have reared their ugly faces into my life as an adult with this condition.

Due to the belief that SPD is a disorder of childhood – WHICH WE GENIUSES KNOW TO BE FALSEanother belief now exists that there are no adults with SPD at all. Because of this idea that adults don’t have SPD, it is not recognized by our society, and therefore, we cannot get help or respect.

SO WHERE ARE ALL THE ADULTS WITH SPD?

I’ll tell you where they are. They are struggling to find their place in a world that doesn’t work with their sensory system.  Without acknowledgement from our community regarding this conundrum, we find ourselves turned off by the world.

helloworld

herrow

Moral of the story is this:

Adults with SPD are out there.  We are here! (Well, not really. We are actually trying to avoid the entire world while simultaneously being part of the entire world. It’s a tad complicated.)
Spread awareness and educate your fellow human beans that, in fact, adults with neurological condition DO exist. We need your compassion and respect in order to overcome our challenges.

xo kelly

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Successful Mall Girl is Successful

Once upon a time, like last week, I went to the mall to do some shopping. 

(All of my SPD friends can get up off the floor now, as I’m certain all of you must have fallen out of your chairs with the sentence you just read).

But fear not, bloggy friends! Not only did I go to the mall, but I went BY MYSELF, and….

I LIVED TO BLOG ABOUT IT.

Is this a miracle? You could say that.

Is this a product of my fearless badassery and warrior-like approach to my entire life? Mostly.

Is this a freaky incident that I tried to savor as much as possible because it was so unbelievable. Yes.

 

Ladies and Gentlemen, it is time to recollect my astounding mall experience.

First, I had to make it through the parking lot. An SPD’er in a parking lot is usually a recipe for disaster. One horn, one beep – we are done. When I strolled through the lot, bracing myself against the painful NY coldness, I was like prey being hunted by my predator. Yet as I passed car after car, nothing happened. I hauled open the heavy doors of Dick’s Sporting Goods and threw myself inside. Awesomesauce, I thought.

Once inside, I tried to pretend like I was a very capable young woman on a shopping adventure. I also knew it was important for an SPD’er such as myself to review my body awareness – am I walking straight? Do I look like I’m dying? Do I appear as if I’m in need of psychiatric help? If YES, then it’s time to find the nearest exit. It’s a simple evaluation process:

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Luckily, I was fine. Everything checked out.

Being inside the mall is one thing, but then you must have to deal with the specific environment of each store WTIHIN the mall. I began my journey at the ever-sexy Victoria’s Secret.

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I was anxious. What if something happened inside? I was alone! Also, oh yea, I HAVE SPD.

Amazingly, the only bad thing that happened inside Victoria’s Secret was a shattered sense of self-esteem and general uncomfortableness.

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After Victoria’s Secret, I did everything that a good little SPD human was supposed to do. I avoided candle stores. I stayed away from the food court. I dodged screaming children. However, I did do something bad….

I WENT INTO HOT TOPIC.

For those of you who don’t know, Hot Topic is a scary-looking store on the outside with lots of interesting things on the inside: Harry Potter, Frozen, Walking Dead, Disney Princesses, Adventure Time, music, earrings, magic, delight, etc.

The music in Hot Topic usually is overwhelmingly loud and as much as I love the merchandise, this place kills my SPD.

BUT AGAIN, I MARCHED OUT COMPLETELY UNTOUCHED. ANOTHER MIRACLE.

What’s happening??! I thought to myself. I should do MORE stuff!

So what did I do?

I GOT A PRETZEL AND SOME LEMONADE.

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I sat on a bench, enjoyed my salty pretzel and sweet lemonade. I chuckled at the funny array of people, myself included. I felt so blessed to be doing all of it. At the same time, I remained vigilant for my top enemy.

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I somehow managed to survive the encounter, so I kept going.

Through Hallmark, Macy’s, and the cheesy leather goods emporium, I frollicked like the very normal shopper that I was so desperately trying to be.

It was surreal; it was exciting; and dare I say, enjoyable?

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THE FINALE

One of my greatest foes in life has to be escalators. In fact, the very first post I made on this blog was about escalators. This is the level of seriousness I’m talking about here.

Due to my perfect record so far that day, in addition to my overwhelming desire to be a complete BEAST, I marched towards the great escalators, and then I stood before them as one would do if they were about to destroy their enemy.

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Escalator was all like:

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And I was all like:

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AND THEN I WAS LIKE:

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Then it was over.

No traumatic escalator experience. I mean, I held on for dear life and looked so awkward that I could’ve out-awkwarded anyone in a 10 mile radius. BUT WHO CARES….I DID IT.

While it wasn’t a perfect time at the mall, it also wasn’t a complete disaster. More importantly, I went ALONE. I had nobody to fall back on if necessary, but I did it anyway. The successfulness of this day was in the very fact that I conquered my anxieties by going to the mall by myself while experiencing anxiety, and being ok with the unease.

I’m not sure why the sensory gods blessed me with a nice trip to the mall, but they did. I left on Cloud 9, wherever that is. Probably near here:

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xo kelly

Also, I was only there for about 2 hours. This post makes it sound like I was there for 10 hours. Just wanted to let you all know…I’m pretty beast, but I’m not 10 hours beast.

 

World’s Best Coper

To cope.

According to the dictionary, the word cope generally means to successfully deal with or handle something that is difficult. Another dictionary refers to it as overcoming problems and difficulties.

While I’m not sure how successful I am, I’ve developed decent ways of coping with my severe sensory problems. I am a good coper…sometimes.

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People cope in their own way. People with sensory problems like myself have to resort to coping in strange ways. Let’s explore some of those ways in which people with sensory problems cope:

1. DEEP PRESSURE

Those of us with wacky sensory junk have a strange affliction for the sensation of touch. We hate it. We love it. If you’re like me, you can’t stand light touches, but love deep pressure. To fulfill my need for sensory stability, I need a buddy. Usually my sister, the helpless victim to my needs:

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Ahh, sisterly bonding at its finest.

2. WALKING/RUNNING

Another great way to soothe sensory-related anxiety is to go for a walk or run. The feeling of your feet on the ground can be very stabilizing. But be careful, sometimes walking when overstimulated can leave you dizzy and freaky-looking (see my post about turning into a T-REX).

As I was saying, walking and running can be great.

Unless you are a weirdo like me, and since toddlerhood have been pacing for hours in confined spaces, like a bathroom.

pace right

pace left

INITIATE LAUNCH SEQUENCE. TURBO ENGINES….GOOO!

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Fun Fact: I still do this all the time. Also, I’m still single. AMAZING, I know.

3. ROCKING CHAIR-ING

On the 8th day, God made the rocking chair, so people with sensory problems can experience its glory and power. That day, praises for the chair were sung by all the angels…..all five of them. They sang really loud to compensate for the lack of angels:

angel rocker

The rocking chair and I fell in deep, disgusting love. Cheesy one-liners starting appearing:

love rocker

The movement of being in a rocking chair is so wonderful – so calming to my sensory system – I feel as if I’m being transported through space, through time even! It’s like the twilight zone, except, it’s not. It’s just me in a chair.

space rocker

Then something like this happens:

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4. BICYCLE RIDING

So this one may not be for everyone. But this works for me….and this is my blog. So there.

I very much enjoy bike riding. The combo of using my legs to push the pedals and using my arms to hold and steer myself provides great relief when I’m overstimulated. I would ride my bike more often, except I live in a fairly rural area of New York. I can’t ride without fear of this happening:

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5. BRUSHING

I’ve mentioned brushing in a previous post (Occupational Therapy Adventure). Sensory brushes are great as they provide deep pressure to numerous parts of the body. I like the consistency that brushing provides, and I also like that I can control it myself. What person with SPD doesn’t love control, AM I RIGHT?

The only strange part about using brushing to cope with sensory issues is that it can be rather odd to tell someone about. For instance:

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And that’s how the cookie crumbles. I have many other less boring but still strange ways of coping with my SPD, as I’m sure many of you do as well, but I’m going to end it here. Moral of today’s post: if a Hollister model dressed in a fancy suit wants to take you out for a nice dinner date, don’t tell him you have to brush yourself for 40 minutes (even if you DO). This has never happened to me, but when it does, I will be ready. I will be PRE-BRUSHED.

xo kelly

SPD vs just being sensitive

I have found that there appears to be a bit of confusion as to what it means to be sensory sensitive.

This confusion comes in many forms.

One area of confusion is often with children. I have read about and seen several instances where children display very poor behavior and their parent(s) explains that they have a sensory processing disorder (or something of that nature). While I don’t doubt that children with sensory sensitivities are prone to tantrums, meltdowns, and strange behavior or movements, SPD is becoming the name given to out-of-control children as an excuse for their behavior.

For example, I was in a bookstore and there was a young boy running around, making too much noise, taking things off the shelves, and generally causing mayhem and not caring what his mother had to say about it. I overheard his mother tell someone, “Well, he has the sensory processing thing, so…”

ok.

Who knows. Maybe this four year old boy did have sensory issues, but that shouldn’t be the excuse for his unruly behavior. Unfortunately, I see this a lot. It is becoming a default diagnosis for badly behaved children who don’t fit into other categories. It sounds like this:

“Your child likes to throw and break stuff? SPD.”

“Your child doesn’t listen to you at all? SPD.”

“Your child screams and punches you? SPD.”

This is very scary, considering the fact that I know how real SPD is, and that there are many children and adults with it, yet, it is becoming very much like ADHD in that it is being overly-used to compensate for lack of decent parenting or other issues in children. Then what happens is that people who DO have sensory issues are not taken seriously by the medical community.

 

The second area of confusion I’ve noticed is that there are people who don’t understand the concept of SPD and claim that every little thing that bothers or annoys them is because of a sensory processing issue. This is not true.

So let me give you a little demonstration:

Person WITHOUT SPD (a generally sensitive person):

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TWO SECONDS LATER….

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Person WITH SPD (a person with a sensory disorder):

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TWO SECONDS LATER….

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Can you see the difference?

A person who is generally sensitive to things may be bothered by something, but they have the ability  to push that sensitivity into the back of their mind. It no longer bothers them, and maybe they notice it….but they have the ability to remain calm and focus on other things despite this sensory annoyance.

A person who has SPD cannot stop perceiving sensory input (unless you are a hypo-sensitive person who needs MORE sensory input, than this little bit doesn’t apply to you, but you get the gist). The jeans are more than uncomfortable – they are disturbing and nothing else matters (NOT EVEN CUPCAKES) because my brain cannot stop being upset with the sensation of denim jeans on my legs. I cannot focus on anything else, and I definitely do not feel calm.

The latter story ends something like this:

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I hope this post has helped clarify the difference between being annoyed by a sensation, and having a sensory problem. As usual, comments or discussion is welcome!

Also, here’s me and a giant cupcake:

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-xoxo kelly

Horse Therapy Adventure

Back in high school, when my dear mother was desperate to help me with the never-ending stream of problems that I faced, she opted to try healing with horses. Specifically horse back riding, or hippotherapy, which by the way, has nothing to do with hippos.

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This is the part where I should explain my feelings regarding hippotherapy. However, you should know that I have great talent at blocking out huge chunks of time that may or may not have been traumatic. What you are about to read is my fuzzy recollection of my first day of horseback riding therapy. What is clear, however, is the fact that that day will never be forgotten.

I remember my mom and I walking into the place. The first thing that hit us was the smell. It was hard for me to get past. Everyone else seemed immune, or at least, mostly unaffected by the stench.

We were greeted by a cheery lady (her real name I can’t remember, so I will call her Susan) who gave me a helmet to wear. I think it was blue. But who cares what color it was.  Bottom line: I was HOT. See for yourself:

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We went and sat with her in a tiny room with appalling lighting. My mom explained why I was here and how sensitive I was to, well, everything. She explained my severe sensory issues and my recent diagnosis of ASD. Susan said she understood my situation. That was too easy, I thought.

Susan walked my mom and I through a short hallway that led to a door. “This is the barn,” she said. The door opened up to a massive open space covered with hay.

Then she walked us to another door that opened up to stables. We opened the door and I nearly lost bladder control because this was the first thing I saw:

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“She’s the largest breed of horse in the world,” said Susan. Also, the most insane-looking.

The next thing I knew, the horses all started smashing their hooves into their stable doors. BANG BANG BANG BANG!

Well, that was all I needed. Now that I was reduced to a pathetic crying blob in a helmet, Susan began to understand the seriousness of my situation.Picture 42

I was ushered quickly into the large barn where I waited for my horse.

My horse, I thought. I imagined something regal, majestic, and strong. Something along the lines of this:

4-amazing

Heck, I’d even settle for this:

white-horse

However, when my horse came into the barn, it looked more like this:

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Ok. So it wasn’t what I had pictured in my mind….at all. Still, I would not give up hope. His name was Neil, I was told. “He’s very relaxed and he just loves everyone!” said Susan with delight.

Neil was a nearly as round as he was high. A blue blanket with yellow stars covered his back. I am unable to comment about Neil’s intelligence level at this time, but I’m certain it wasn’t too high. Still, there was an strong air of calm about him that I definitely appreciated.

I walked up a set of stairs and was placed onto Neil’s back. Although he could’ve passed for a miniature pony, I still felt disoriented and high-up off the ground. My grip tightened on his reins as we slowly started to walk out the barn and to the trails. The cheery lady guided Neil and another older woman walked next to me as I rode.

We barely walked three feet though when Neil stopped abruptly and I heard plopping sounds somewhere behind me. “Oh, he’s very relaxed,” Susan said, “he must like you!”

I was all like:

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To my horror, I quickly realized that Neil was a popping-machine. It was practically his favorite activity. Outside the barn, the two women guided Neil down a short dirt path. “We’re going to try this hill now, ok?”

She made that sound like a question, but I knew she wasn’t really asking me. It was more of a command: WE ARE GOING OVER THE HILL KID.

With my already over-stimulated state from the stable trauma, and my terrible body-spatial awareness, going over the hill wasn’t going to be pretty.

I basically thought I was going to die. Neil probably thought so too, although he never said anything. He just kept pooping.

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When I thought it couldn’t possibly get any worse, Susan said “Let’s walk Neil through this stream up here. Maybe he could stop and have a drink too.” Susan’s joyous spirit was making me nauseous. Maybe Neil could poop on her.

After several upsetting, sensory-crushing experiences, all sense of perspective was lost. Everything seemed bigger, more horrible and dangerous. This was no stream we were crossing…

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Nobody cared though, so I buried my face into Neil’s mane and placed a death grip on his face. He probably disliked that, but again, he didn’t say anything to me. He pooped though.

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Finally sensing my distress, Susan told me that we were going to walk around the ring. The ring was a dirt oval surrounded by a wooden fence. When we got there, another teen girl was riding a muscular black horse. I entered the ring, and the difference between the two of us and our horses was striking, if not, hilariously noticeable.

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I sensed a air of superiority from her. Neil stopped pooping, so something was definitely going on. She was a professional rider on a champion horse. I knew she thought of me as one of “those kids” on “that horse.” And actually, I was. YEA. I WAS ONE OF THOSE KIDS ON THAT HORSE. So as she left the ring, I said out loud:

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I’m not sure she heard me, but that doesn’t matter. What matters is that Neil and I survived steep mountains and the raging river. We braved the dirt paths and Susan’s annoyingly sunny demeanor.We were a united force. We were one.

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And so my day of therapeutic horseback riding came to an end. I rode around the ring endlessly, somewhat enjoying the consistency of the circle. No hills, or waterways. Just dirt. It was all so…. unsurprising. Just how I like it.

And I learned that Neil may not have been the most impressive-looking creature, but he certainly had the confidence to carry me – having meltdown while clawing at his eyeballs – without flinching. I guess that’s why he’s a top-notch therapy horse. I’d bet ya that that other horse couldn’t do HALF of what Neil does.

-xoxo Kelly

By the way, here is a picture of the type of horse that Neil is. This isn’t him, but it looks just like him.

Good boy, Neil. Poop your way to victory.

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Escalators

Let’s talk about escalators. Let’s really talk about them.

Firstly, who in their right mind thought that a moving staircase was a good idea? As if I don’t have enough problems going up and down regular, non-mobile stairs, yea, why not, let’s make the stairs move. Minus 30 points from Gryffindor!

Humans with ASD (Autistic Spectrum Disorders), Sensory Disorders, inner ear issues, can I get an amen?!

The Problem

The flaw is in the design, actually. The fact that escalators are usually in large, open areas does not help that when you are on them, you feel like you are flying through space and time. In addition to this, the walls that connect the handrail to the actual staircase are usually clear/see through. As in, I can see the world moving around me, but my body is completely still. And then my vestibular system is all like, “WHAT’S GOING ON. STOP.”

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As I prepare myself to get onto the death trap escalator, humans gather behind me and I can feel their sense of impatience growing indefinitely. Except it’s worse because it’s a collective social impatience; like a giant ugly blob of peer pressure.

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Escalators are terrible aside from the possible threat of being sucked into the machinery, underneath the floor and down into the deepest pit of hell.  Momsy always warned me of that when I was younger. Thanks mom.

Humans of my neurotype are not designed to casually walk on and off an escalator. The idea of going from a flat, stable surface to one that is moving uphill or downhill is not only disturbing, but highly unproductive. As much as I would like to, my body struggles to use an escalator.  I have comprised a list of several steps which I take when dealing with escalators:

1. Prepare body, mind, and spirit for descent/elevation via moving stairs. This is a personal experience unique to each individual.

2. Allow other humans to go ahead of you, knowing your escalator experience will take longer. This will avoid collective social impatience to build up behind you.

3. When the time has come, select a stair as it emerges from the start of the staircase. But choose quickly, or else you will miss it, and then have to pretend you weren’t going for that stair in the first place.

4. Now comes the hard part, in a matter of mere seconds, you must hurl your body through the air and securely onto the chosen step before it begins its journey.

5. Once on the step, grab hold of the handrail, which may or may not be covered in germs. If so, casually grab the nearest person who will (hopefully) be less germy. Hold onto them for as long as socially possible. Don’t make eye contact.

6. Don’t look down, up, sideways, left, or right. Closing your eyes only will help sometimes. Just don’t look anywhere…pretend your on a tropical island sipping a martini.

7. Once you find yourself towards solid ground again, prepare yourself for dismount. Let go of the handrail or stranger, and bend your knees slightly. Focus on your landing spot. It’s all you now.

8. Quickly jump off, and land on both feet. Use your arms (or a stranger again if necessary) to stable yourself. Be as nonchalant as possible.

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Implications

The more I think about this escalator stuff, it’s absolutely absurd.  My whole life, whenever I encountered an escalator, I’ve always had to find a REAL staircase or an elevator to use instead because the escalator was so irrational.

Side note: the elevator being used for an escalator alternative has to have solid walls, and not see-through walls, because I can’t handle that see-through crap sauce as I’ve already explained.

I am the member of the family that refuses to go down the escalator at the mall. I am the one that causes the hassle for everyone. My family knows this and I’m glad they enjoy themselves as they watch me attempt to tackle an escalator. Also, don’t ask me why I even go to malls because I don’t know, alright?

To this day, I believe the escalator is a traumatic torture device used to publicly humiliate me and others like me who experience a neurological disconnect from the modern world. Humans are not designed evolutionarily to travel via moving staircase. It’s just WRONG.

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In the end, the escalator and I have slightly improved our relationship over time. Do I still sweat like a sinner in church when I approach an escalator. You bet. Do I get on it and off it and do the best I can despite the ridiculousness of the situation. Yes.

Buddy the Elf knows what I’m talking about. Look at that form:

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You can see the collective social impatience building up behind him. Everything I said was true.