fourworlds
fourworlds
This site is under deconstruction. Making the most of the Age of the Amateur. Mobility. Virtual Living. Art. Sense and nonsense.
200 posts
Don't wanna be here? Send us removal request.
Last Seen Blogs
Photo
Cognitive Dissonance Comics: Millennial Edition
0 notes
Photo
Took the original satiric photo concept and turned into a darker hand drawn comic.
0 notes
Photo
When the going gets absurd, the surrealist gets weirdly metaphoric.#election2016
0 notes
Text
This brave, moving post is by someone I cherish deeply.
Rare Disease Day 2016
It’s really hard for me not to be bitter on the best of days, but today it is especially difficult.
You see, a disease is classified in the USA as “rare” if it “affects fewer than 200,000 Americans at any given time.”
KLS affects roughly 1000 people in the whole world. So, when people jokingly state that I’m “one in a million,” it’s actually a bit of an understatement.
I don’t say this to try to appear special, or different, or to invalidate anyone with any disease, because I know that even the most common of illnesses is still extremely hard.
I say this because I am bitter. I say it because I am pissed off that, even on a day where the thing that ruined my whole life is supposed to be acknowledged, it won’t be. Because even on rare disease day, my disease is still too rare to be mentioned. Still too rare to be given funding for research. Still too rare to be understood. Still too rare to be anything but a joke to those who couldn’t possibly be expected to see it for the shit show it is.
When I am in an episode, I can’t drive, I can’t really leave my house, I can barely think let alone hold a conversation or be productive. I can’t shower, I can’t make myself food, I can’t make it through an interaction without crying. I can’t see properly, I don’t feel like myself, I am hungry beyond words, and yet want nothing to eat, my body doesn’t feel like my own.
And that’s only in the few hours that I’m awake in a day. For the rest of it, I’m just not there.
The isolation is incredible.
It’s hard to remember that I am not the only one who goes through this. It’s hard to remember that there are other people out there who have had their lives flipped on it’s head like I have.
It’s hard to believe that people still care about me when I come out of an episode and no one noticed I was gone.
I can’t have a job. I can’t really commit to anything. I can’t take a normal amount of classes. I couldn’t even finish high school.
It’s like I’m living a life that isn’t mine. When I’m awake, all I can think is this isn’t me and this isn’t how my life is supposed to go.
I get asked all the time “are you still having health issues?” from people I haven’t talked to in a while. Or, from people I am close with: “oh, is that acting up again?”
It’s like they’re surprised. It’s like they don’t understand that I could live out the entirety of my life without any certainty at all if I’ll ever get better.
When I’m asked how things are going I am expected to smile and say that they’re fine, or great, or school is going well, or we’re making it through, or, when I’m feeling particularly daring, shrug my shoulder and say “you know, haven’t died yet!” I am expected to be okay with the way my future has gone down the drain. And I am l expected to smile and laugh good-naturedly at the words that make me sick to my stomach.
“I wish I had that!”
“Have you tried yoga?”
“Hardships build character!”
“I’m sure you’ll be thankful one day.”
“You’re so lucky you get to sleep all day.”
“I can’t believe you cancelled, you’re so selfish!”
We are supposed to be strong, and we are supposed to face every terrible day with a brave face, and we are supposed to diminish the crappy-ness of our lives and we are supposed to take it when people are ignorant, and we are supposed to be good little fighters who never complain and are thankful for the good days that we do get, and forget about the time we have lost to our disease.
But, just for today, I refuse to do that.
So yeah, I’m bitter. And I get that today is supposed to be uplifting for us (alone we are rare, together we are strong!), and enlightening for all of you lucky bastards that have never heard of these diseases.
But I am completely bitter, and I’m not sorry about it. Because after today, you can forget about it and go back to your lives.
And this is my life.
P.S. Even though this is a very negative/complain-y post, I want to make it clear that I am 100000% glad to answer any questions anyone has about KLS and I even promise not to be sarcastic or mean :)
4 notes
·
View notes
Video
vimeo
A Creative Moment. Sponsored by your Mojo. Episode 1.
0 notes
Photo
A rare cover from a short-lived comic from the 1950s sheds light on the origin of our company’s name.
0 notes
Video
vimeo
Multi-track version of song I wrote back in April, with video clips from 1922 silent film, "Mechanical Doll" by Max and Dave Fleischer.
0 notes