Education Grumps

This is gonna be long, but I implore you to bear with me.

Today’s episode Paper Mario: The Thousand Year Door was fantastic!

…except for a passive joke Arin made towards the end. You can say I’m being overly sensitive, but at least hear me out before you do so.

NOTE: I fucking love the Grumps and have been watching them for years. I’m not trying to draw hate to them or anything of the sort. I just wanted to take this scenario to raise awareness, because I believe this came from a place of ignorance and not an intent to harm.

In today’s episode (July 2nd, 2017), Admiral Bobbery joined the party for reals this time. For those who watched the episode or have played the game, you’d know that Bobbery is convinced he’s going to die, and thus closes his eyes so he drift off to the afterlife. Except… he’s not dead. He’s asleep. Take note that he closed his eyes of his own volition, purposefully laying back to “die” (fall asleep in actuality).

“Cut to the chase- what was so offensive?” said the Straw Man™ across the room.

Before I put it to words, I’ll first put the quote here as well as its context:

[A Sleepy Sheepy item was used on Mario and Bobbery, though only Mario was affected. Thus, Mario fell asleep while Bobbery remains awake.]

“Bobbery the sleeping fucking narcoleptic bomb doesn’t fall asleep?”

Okay, let me do some explaining. For starters, “narcoleptic” is not a casual adjective. It should never be used to describe someone unless you are talking about someone who does have narcolepsy. The reason is simple: narcolepsy is a serious illness. Throwing around the term as if it’s nothing trivializes a condition that will affect 1 in 3,000 people for their whole life. There is no cure.

As you may have surmised by now, I am someone who has to live with narcolepsy. It’s something that affects me every day, some days moderately and some days extremely.

Someone proposed a possible explanation to the effect of: “Well, Bobbery abruptly fell asleep earlier so maybe they actually think he has narcolepsy.”

That is a good thing to consider, but I earlier explained how he fell asleep of his own volition, not against his will. Not only that, but he was (more or less) easily roused from his sleep. Furthermore, people with narcolepsy cannot be forcefully woken up from a sleep attack; they have to just wait it out until they wake up. That aside, I do not think Arin actually thought Bobbery had narcolepsy. He has made a handful of passing jokes about someone being narcoleptic in past Game Grumps episodes.

The media either never talks about/shows narcolepsy, or when they do show it they show it as a trite stereotype. If that’s all people see, of course they won’t know that it’s not a joking matter? I won’t preach for too long, but I’d like to describe a bit of what narcolepsy is really like.

Narcolepsy manifests differently with each person, so I’m describing what is typically the most common experience. That being said, let’s talk about sleep attacks. You don’t slowly lull into a sleep attack. With absolutely no warning, at any time or place, it occurs out of nowhere. Every time, there’s the risk of being unlucky and causing trauma to the head (I am fortunate for this to not have happened). My body is consistently spotted with bruises from the falls caused by sleep attacks. When it happens in public, it’s mortifying. I become a public spectacle if someone I know isn’t with me to stop them from gawking. For me, these episodes last up to 20 minutes. Some of the worst places I’ve had sleep attacks are the middle of the mall, the grocery store, the middle of class, the hallway… you get the idea.

And that’s just a fraction of what narcolepsy really is. I figured this illustrated my point enough, and the reason that it upsets me so much when people throw around the term as if it’s a synonym for “sleepy”.

Once more: this is not meant to be vindictive or judgemental. Instead, I wanted to use this opportunity to make this post because I’m pretty certain just about everyone reading this also wasn’t aware of why it’s a big deal.

If you’re a Grumps fan and wanna pass some knowledge on, feel free to reblog. I encourage it!

I Need to Follow More People

I’m only following like 120 people and I need more non-fandom content on my dash. I mean, if you post fandom stuff that’s okay, I just need something to break up the Undertale revolution. :’D

I want to check out and maybe talk to more spoonies, non-binary people, and so on. Basically I’ll just list what I’m looking for- feel free to reblog as a signal boost, just tag it as ‘signal boost’. Tag otherwise or don’t tag and I’ll go check your blog! 

Looking For People Who Are or Who Blog About:

• Spoonies/Chronic Illness ((All kinds, but narcolepsy, cataplexy, and chronic pain specifically are relevant to me.))
  
• Transgender/Nonbinary People
• Neuroatypical People ((Again, all kinds, but the ones specific to me are BPD, OCD, PTSD, GAD, and Depression))
• College Students ((I just started college and I just keep blogging about my experience and would follow people who blog about their, too!))

So, if you’re any/all of the above, hit me up with a reblog! Mention in the tags which apply to you, and if you’re just boosting, tag as signal boost.

Narcolepsy and Memory

A lot of people don’t really believe me when I say I have memory problems, or a lot of the time they’ll get angry at me because of things that happen due to my memory issues.

One of the lesser discussed byproducts of narcolepsy is, in fact, memory loss and issues involving attention, remembering, and memory. Because of EDS ((excessive daytime sleepiness)), people with narcolepsy can reach such pronounced states of drowsiness that we can’t remember much of anything that occurred during that state of sleepiness.

I’ll be quoting some things from this article, which I think does a great job of highlighting some of the things I’ll mention.

“Excessive Sleepiness. All people with narcolepsy experience excessive sleepiness during the day with episodes of falling asleep rapidly and inappropriately, even when fully involved in an activity. It is sometime described as an irresistible daytime need for naps, which will generally refresh the patient. These events may be characterized by the following behaviors

Patients typically have periods of drowsiness every 3 or 4 hours that usually end in short naps.

Patients may sleep during the day for a few minutes, particularly if they are in an awkward position or for a few hours if they are lying down.

Patients often underestimate the duration of their drowsy periods and may not recall clearly their behavior during that time.

Source: Narcolepsy | University of Maryland Medical Center http://umm.edu/health/medical/reports/articles/narcolepsy#ixzz3jfso2OCO

University of Maryland Medical Center”

I don’t have the source on-hand, but studies have illustrated that as someone with narcolepsy, my “normal” is how someone without a sleep disorder would feel after two days of sleep deprivation. Think back to the longest you’ve gone without sleep; did you have a hard time focusing, remembering, staying awake, or articulating yourself? That’s me, every day.

Another factor that impairs my memory is “microsleeping”. I experience these episodes regularly, most often at work or during classes.

Microsleep and Automatic Behavior. In some cases, patients have so-called microsleep episodes, in which they behave automatically without conscious awareness. Such automatic behavior may not be recognized as part of a disorder by either patients or the people around them. Some examples include:

People with narcolepsy can be driving or walking competently but end up in a location different from the intended one.

A narcolepsy patient can be carrying on a conversation and jump from one unrelated topic to another or just trail off and stop talking altogether.

The patient may suddenly perform bizarre actions, such as putting socks in the refrigerator.

Patients may have severe forgetfulness.

Their movements may suddenly become slow or clumsy.

In some cases, their behavior may resemble some forms of epileptic seizures.

Source: Narcolepsy | University of Maryland Medical Center http://umm.edu/health/medical/reports/articles/narcolepsy#ixzz3jftfls00

University of Maryland Medical Center

Although technically conscious, people with narcolepsy tend to enter these states of automatic behavior where the brain is in “sleep mode”, so to speak. When I took AP Calculus, I would enter a microsleep for the duration of the class, wake up when the bell rang, and find that I’d taken unintelligible notes during the class. I would later try to teach myself the course material because I remembered nothing from class and my notes were akin to word salad. It was miserable, and my grades plummeted because of this.

Furthermore, because I experience obscene amounts of REM sleep compared to non-narcoleptics, my dreams are intensely vivid and it’s easy for me to mistake dreams for reality, given that my EDS blurs the line between sleeping and wakefulness.

It’s all too easy for me to drift between sleeping and waking while both seem equally real, causing a lot of difficulties. I will assume I told someone something important, but it turns out I told them in a dream.

I guess what I’m trying to say is this: when I say I have memory impairment problems, I’m not joking. If I tell you something two or three times, please don’t make fun of me. If I assume I told you something but I never did, please just gently let me know and move on. If I forget to do something you asked me to do, please don’t get angry- just remind me. I’m trying my best, I promise.

So apparently the narcolepsy awareness ribbon is a solid black ribbon? Actually, a black awareness ribbon can mean like… twenty different things. 

I wish there was a more distinctive one- I might make one but idk if it’ll catch on lmao.

I’m not your punchline.

thewritegrump:

MY

ILLNESS

IS

NOT

A

JOKE

STOP.

Do you have no concept of how hurtful these “jokes” are? People love to make light of narcolepsy or crack jokes about it because “lmao it’s so funny people just fall sleep how hilarious and quirky hahahaha”.

Stop.

I see stuff like this floating around and it’s disgusting. My suffering is not your punchline. My insecurity and illness and disability is not your joke. Shut up. Shove off. I am not your punchline.

I’m not your punchline.

MY

ILLNESS

IS

NOT

A

JOKE

STOP.

Do you have no concept of how hurtful these “jokes” are? People love to make light of narcolepsy or crack jokes about it because “lmao it’s so funny people just fall sleep how hilarious and quirky hahahaha”.

Stop.

I see stuff like this floating around and it’s disgusting. My suffering is not your punchline. My insecurity and illness and disability is not your joke. Shut up. Shove off. I am not your punchline.

I’m so glad tomorrow is my day off but I don’t know what I’m going to do on Tuesday because I don’t want to go back to work. I don’t want to go anywhere. I’m so sick of this happening and I don’t want to go anywhere or do anything because this keeps happening and it’s awful and embarrassing and I hate this.

My coworkers meant well but I feel so stressed and exhausted right now. I had a cataplexy episode at work, and they were trying to be helpful and stuff but in trying to help they ended up manhandling me like a doll and there were just too many hands on me and I was propped against a coworker and I couldn’t respond to tell them to just let me lay on the ground and basically my head is throbbing because being touched and pushed against people and tugged around like a doll is really stressful. I couldn’t say anything after the fact either because I already caused them enough stress and worry that I didn’t want to seem ungrateful- I really did appreciate that they meant well… I just feel really uncomfortable right now, besides the usual humiliation of an episode.

Oh my goodness gracious.

Did you know that they train service dogs specifically for narcolepsy? I just found this out and I am floored.

Narcolepsy service dogs make sure their handler wakes up on time, can detect microsleeps and wake them up from them, can predict cataplexy episodes and even be trained to use their back as a place for the handler to slump over instead of taking a hard fall to the ground. They can be trained to remind their handler to take stimulant medications and even alert them of certain times of day just to keep them grounded, as well as nudge the handler every so often to make sure they’re attentive. They even are equipped to handle panic attacks since many people with narcolepsy have depression and anxiety from the EDS and cataplexy.

I am so upset that I don’t have money- service dogs are expensive. But could you imagine? The thought makes me want to cry in a good way. Being able to be out in public and not be constantly afraid of a cataplexy episode because the dog would give me a warning if it sensed I was slipping out of it, being able to go through my daily routine and not miss half of it due to microsleeps, being able to have that reassurance that I’ll be woken up or if I start to panic that I’ll be consoled. I seriously am blown away by how much easier and safer my life would be if I had a service dog? I don’t talk about it a lot but honestly? Narcolepsy has huge consequences and it really does make a massive impact on how I’m able to live. I’ll make a big old post about it at some point, probably, but I just… damn. I just wish I had the money because just thinking about this makes me want a service animal so badly. My life could be so much easier, so much safer.

At the very least, its incredible that narcolepsy service dogs exist in the first place.

So I was explaining narcolepsy and cataplexy to my coworker the other day and his reaction was,

“That’s actually really cool.”

….no? No, it’s not?

That’s not the first time I’ve gotten a reaction like that, either. Lately it seems like people often respond with: “That’s super interesting!” “Wow, that’s really unique” or “How cool!”

??? Why ???

Can someone please explain to me what is so “cool” and “interesting” about losing control of my muscles and collapsing in public for an extended period of time? Please elaborate on the “cool” part of being excruciatingly tired no matter what I do, or my grades plummeting because I can’t stay awake or focus on anything.

My illness isn’t some fun fact for you to think is neat and interesting and fascinating. Yeah, you probably didn’t mean any harm with a reaction like that, but please refrain.

I’m thinking of getting one of those medical bracelets before I go off to college, since it’s pretty much guaranteed I’ll experience cataplexy while out and about on campus at some point.

Does anyone know a good place to get one? What do I even put on a medical bracelet? Do I just note that I have narcolepsy with cataplexy and that dropping dead is normal or what?