my dad died from ALS when i was 3 years old. he was 36. my mom was 33. that was 30 years ago. now i’m the same age my mom was when my dad died. and there is still no cure for ALS.
this is what happens when you have ALS: your muscles slowly stop working, one part at a time. for my dad, first he couldn’t use one of his hands. then his arm. then the other arm. then he couldn’t walk. then he couldn’t stand up. then he couldn’t talk. then he couldn’t swallow. then he couldn’t breathe. then he was dead.
this all took about two years. he was diagnosed when i was about one year old. the only memories i have about my dad are of an inert body in a wheelchair or lying in a bed with a bunch of tubes stuck into it. as i was learning to talk, he was losing the ability to speak. as i was learning to walk, he stopped being able to move. my mom often had to choose between who she was going to help go to the bathroom at any given moment: her husband or her toddler.
after my dad died, my mom took over the philadelphia chapter of the ALS association. it consisted of a shoebox full of notecards with names on it. now it is a multi-million dollar organization with a large staff. she is still in charge. my mom is one of the most amazing people on the planet, basically.
these past couple weeks have been mind-boggling. i have openly wept watching so many of these videos. i still don’t completely get how all of this has happened, but now we live in a world in which lil wayne and taylor swift and oprah and justin timberlake and weird al and bill gates talk about ALS. my mom just emailed me this sentence: “lebron james ice bucket challenge.” i mean, IS THIS REAL LIFE?! i just keep saying over and over: holy shit. holy shit. holy shit.
so far, it has raised over 10 million dollars… and counting. my mom has spent every single day of her life for the past three decades trying to get this kind of attention and funds for this disease.
i don’t care if it’s a stupid gimmick. i don’t care if people are just doing this because it’s trendy or because they want pats on the back. i don’t care if it’s the new harlem shake. i don’t care if for the rest of my life, when i talk about ALS, i have to say “you know, the ice bucket disease.”
please, everybody, please keep pouring buckets of ice over your heads. please keep donating money. please keep talking about this.
my mom’s chapter:
p.s. the only reason i haven’t done my own ice bucket challenge yet is because i wanted to do it with my mom. we’re seeing each other next week, so it will happen then, i promise.
Think about this next time you think it’s just a stupid gimick
Some guy on Facepunch ripped all of the sounds from Five Nights at Freddy’s so naturally I had to do this
It’s so weird. I just started college on Monday and I had my first job orientation tonight. Everything is being thrown at me at once and I sort of kind of like it.
vine cinematics are getting so advanced and i love it
they’re like 6 second soap operas and I LOVE IT
Season one of Red vs Blue:
Season twelve of Red vs Blue:
I’m gonna do it
I’m gonna make a four foot long whale plushie
New Leaf’s version of a ted talk
Auti-sim is a game where the player undergoes what it feels like to be an autistic child.
The player navigates through a playground as an autistic child with auditory hypersensitivity. Closeness to loud children causes overload for the player, impacting thinking functions. This is represented as noise and blur and hearing distortion.
Participants described the experience as insightful and compelling.
You can play it here: X
KENNY: THE INBRED TIGER WITH “DOWN SYNDROME”
Pictures have been circulating the internet about a white tiger with down syndrome. Kenny’s diagnosis of down syndrome is questionable. But what is sure is that he was a victim of inbreeding. White tigers are rare and to ensure that the offspring would be a white tiger, Kenny’s parents were brother and sister. A lot of his siblings were stillborns or died very young.
But despite all this, breeders kept trying to mate Kenny’s parents. When parents are very closely related, there is a higher chance of both parents carrying the same “bad” gene. So there is a greater risk for their child to have a dominant bad gene.
Kenny lived to be 10 years old. Kenny was described as non-aggressive and very friendly.
A mama shrew and her babies. The mammalian society says “Young shrews are occasionally observed following their mother in a ‘caravan’. Each shrew grasps the base of the tail of the preceding shrew so that the mother runs along with a line of young trailing behind. This behavior is often associated with disturbance of the nest and may also be used to encourage the young to explore their environment.”