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.
shout out to the kids and adults who have memory problems, who get yelled and screamed at by their families for not remembering things
or over-remembering. remembering things no one else seems to remember but still having blankets of empty in their memory and wondering why they can’t remember chunks of things or why their timelines are all off
oh my god i thought i was alone
I think the idea of “if you can go about your life normally then you don’t have a mental illness” is a very dangerous one because it keeps people who need to get help from getting help. They think “I can still go about my daily life so I must be okay” even if they are struggling and suffering.
If you feel helpless, there are ways you can channel your rage and sadness in real life.
1. Join a peaceful protest.
They’re happening all around the country tonight, including at the Gateway Arch in St. Louis, around 7 p.m. Eastern.
2. Recognize that Michael Brown’s death was not an isolated incident.
In 2012, more than 300 black people were executed by police, security guards, or vigilantes. In the last month, three other unarmed African-American men—Eric Garner in New York, John Crawford III in Beavercreek, Ohio, and Ezell Ford in Los Angeles—have been killed by police. Those are the ones we know about.
3. Stop saying “This can’t be happening in America.”
I understand the impulse, I really do. But that impulse only comes to those who are insulated and isolated from how America treats poor people and people of color every day. Langston Hughes wrote “America never was America to me” in 1935. If you didn’t quite understand that poem in your junior high or high-school lit classes, read it again, while you think about what’s happening in Ferguson. Let it sink in.
4. STFU about looting.
And call out your friends and family members who won’t. It’s been five days since Michael Brown was murdered. On one of those days, some furious, grieving citizens caused some property damage. Nine have been arrested. Every other day since then, police with more gear than American soldiers going into battle have been occupying the neighborhood where Brown died, attacking peaceful protestors with tear gas and rubber bullets. They’ve tear-gassed a state senator and Al-Jazeera reporters, and arrested an alderman. They’ve demanded that reporters leave the area and arrested two who didn’t move fast enough. “Disproportionate” doesn’t begin to describe it. If you look at all that and still think it’s important to talk about looting for “balance,” you should know that you sound like a racist asshole.
5. Look Around You.
If you live in an urban environment, you’re in a position to bear witness and document inappropriate and abusive police behavior. If you see an African-American neighbor being detained by police, wait to see what happens. Get your phone out. Download the ACLU’s “Police Tape” app, and if you see something that looks off, take a video that will upload directly to their servers, in case your phone is confiscated. Whatever police may tell you, this is your legal right.
7. Educate yourself about the systematic inequality that leads to civil unrest.
The St. Louis American ran a powerful editorial today that fleshes out the history of Ferguson. When you finish reading that, go somewhere quiet for a bit and settle down with Ta-Nehisi Coates’s “The Case for Reparations.” Don’t stop there.
8. Put pressure on your elected representatives.
Institutional abuse of African-American citizens is happening all over the country, and it demands a federal response. Talk to your senators and congresspeople about enacting policies to protect citizens from their protectors. While you’re at it, maybe suggest they work to limit the amount of military weaponry police can inherit from the armed forces.
9. Listen to your African-American friends when they try to tell you why this hurts.
If you don’t have any African-American friends, you might want to think about why that is.
10. Okay, go ahead and tweet.
And Facebook. Tumblr. Instagram. Vine. Amplify the voices of people on the ground, and help counteract the damaging narratives being propagated by some mainstream media organizations. It’s the very least we can do.
For white people wanting to know what they can do to help.
Need all my white friends to get into this.
Not just whites need to do this, every American needs to do this.