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
Pregnant, out in the heat for an hour and half with a tantruming toddler, while trying to keep her off the soccer field during her sister’s game, was not a fun way to spend the evening.
Tags #pregnancy #mumblr #toddler #soccer season #it's so hot out
Robin Williams didn’t die from suicide. I only just heard the sad, sad news of Robin Williams’s death. My wife sent me a message to tell me he had died, and, when I asked her what he died from, she told me something that nobody in the news seems to be talking about.
When people die from cancer, their cause of death can be various horrible things – seizure, stroke, pneumonia – and when someone dies after battling cancer, and people ask “How did they die?”, you never hear anyone say “pulmonary embolism”, the answer is always “cancer”. A Pulmonary Embolism can be the final cause of death with some cancers, but when a friend of mine died from cancer, he died from cancer. That was it. And when I asked my wife what Robin Williams died from, she, very wisely, replied “Depression”.
The word “suicide” gives many people the impression that “it was his own decision,” or “he chose to die, whereas most people with cancer fight to live.” And, because Depression is still such a misunderstood condition, you can hardly blame people for not really understanding. Just a quick search on Twitter will show how many people have little sympathy for those who commit suicide…
But, just as a Pulmonary Embolism is a fatal symptom of cancer, suicide is a fatal symptom of Depression. Depression is an illness, not a choice of lifestyle. You can’t just “cheer up” with depression, just as you can’t choose not to have cancer. When someone commits suicide as a result of Depression, they die from Depression – an illness that kills millions each year. It is hard to know exactly how many people actually die from Depression each year because the figures and statistics only seem to show how many people die from “suicide” each year (and you don’t necessarily have to suffer Depression to commit suicide, it’s usually just implied). But considering that one person commits suicide every 14 minutes in the US alone, we clearly need to do more to battle this illness, and the stigmas that continue to surround it. Perhaps Depression might lose some its “it was his own fault” stigma, if we start focussing on the illness, rather than the symptom. Robin Williams didn’t die from suicide. He died from Depression*. It wasn’t his choice to suffer that.
FINALLY PEOPLE ARE STARTING TO TALK ABOUT WHAT DEPRESSION REALLY IS.
THIS IS THE BEST THING I HAVE EVER READ
So I’m thinking, I probably shouldn’t eat half a dozen of the Oreo truffles that I just made, since I have my glucose test in the morning.