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.
That was very nice of you! <3
New to me! How cute is he in that picture? Thank you so much for sending me the link. *hug*
gainvapi replied to your post “And with that ice bucket challenge, Liam/Gale »»Josh/Peeta!”
Wait josh did the ice bucket challenge???
Not yet. Sam will be posting a video of his soon, so Josh needs to get on it. lol
Gale will never be better than Peeta. EVER.
Or possibly he’s busy and didn’t know about it. I still think he will do it.
Liam’s Ice Bucket Challenge
finn + apologising
Apologising seems to be extremely important to Finn. Even in cases when he wasn’t at fault (Archie’s date), or when he tells Rae he can’t bear to be just friends with her, he still feels the need to apologise about possibly hurting her feelings. As for Chloe, Finn could have just told her “look, I was drunk, whatever happened happened, sorry but I see you as a friend” but he explained to her his entire “you should never really kiss someone unless you really mean it” concept, and then said he was sorry AGAIN, admitting he fucked up. And even though Chloe acted like it was okay, he went on to say “I felt bad.” before she cut him off. He wasn’t gonna drop it until they were alright. With Big G, Finn didn’t settle for punching and scaring him away, he wanted to hear him apologise to Rae because he hurt her feelings. There’s so much depth in Finn’s character and his tendency to hold himself responsible for things and take the blame is a very dominant part of his personality (and I believe this stems from his mum leaving). I think that Finn hasn’t had it easy, that’s why he’s so introverted when it comes to his feelings and is in a constant state of guilt. But through the hard times, he’s become this honest, righteous boy, who will admit to his mistakes and apologise, who will not shit with your feelings and will always stick up for his loved ones. I don’t know where I’m going with this, but shoutout to Gary and grandma Nelson for raising this fella.
Yay! Francis did the ice bucket challenge! I love him. <3
I don’t think he gets that many tweets a day, but who knows.