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
I am happy with my body.
I am five feet and one inch tall. I have always been petite. I usually weigh just under a hundred pounds.
- I eat a normal diet
- I do not starve myself
- I do not purge my food
- I have never used dietary supplements
- I work out occasionally, but not daily
Thin is my body…
you have a fundamental misunderstanding of how math works
hey that means charity will also get unlimited money so I’m game
so both charity and I get unlimited money, sounds like a win win situation.
I tried so hard to scroll past this. I really did.
damn it Radio 2
I just learned a new method for business.
Celebrities doing the ALS ice bucket challenge
wow im really happy that all of these wealthy people would prefer doing this than donating money to a charity that will save lives
Okay, I’m a stop you right there. Yes, the basis of the challenge is dump water on your head or donate. But what this challenge is meant to do is RAISE AWARENESS. People who see this end up wondering and then learning what ALS is. And who better to spread the message than celebrities?
People who do the challenge are also still asked to make a donation, and to pass on the challenge. This is good. These celebrities are raising awareness, spreading the message, and probably still donating. But hey, they’re horrible people because they participated in this right? It would ‘ve been better if they wrote a check and never told anyone about it at all.
I sometimes get a bit annoyed with it. I don’t think I’m old. I’m 56. Maybe people think that’s ancient. I’m not an old man. My eyebrows, which I’ve never taken much notice of in my life before, Steven’s decided are the most amazing comic devices. Now in the scripts, as a stage direction, instead of saying, “The Doctor looks peeved” or “The Doctor looks annoyed,” they just write, “Eyebrows.” I’m supposed to do something with my eyebrows.