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
Cosplay Couture interpretation of the Bandit from The Fall
Costume (mask, cape, butterflies) and styling by Courtney Coulson
Photography by Luke Milton
Location Karrakatta cemetary
Courtney and I recently watched The Fall together and we’ve both fallen crazily in love with this film. The Bandit has a relatively simple costume but I was determined to find a setting that did the character (and film) justice - not an easy task considering the exotic locales that feature prominently in a film where every single shot is a work of art.We actually had two attempts at this over the course of two days. Our first idea was to use the “blood” soaked sheet as backdrop but the wind proved to make this a near impossible task. Losing light we ended up shelter in the carport where I was surprised to capture some unexpectedly quirky and colourful shots. It was the second day that we went out on location and ended up shunning perfectly manicured gardens to hunt out pieces of exotic architecture. All of these were small details and corners of buildings that were otherwise completely unsuitable but the bleached surfaces carry the illusion well. If these images intrigue you and you haven’t seen Tarsem’s The Fall then I urge you to do so!And I got to keep the mask.- Luke MiltonI’ve long been fascinated by Tarsem’s work since I saw the Cell years ago, he has an incredible visual style that defies comparison, he often worked with the late great Eiko Ishioka, whom I consider to be one of the greatest costume designers of all time. She worked on all of Tarsem’s films, including the Fall where her costumes were integral in establishing sympathetic characters who have very little dialogue and creating a fantasy world that was truly fantastic.I just so happened to have many pieces in my wardrobe that resembled the Bandit, but masks are always such a challenge, because if you’re just a millimetre off in any way it changes the entire look. I made three before I got it right. I used courdoroy to imitate the texture and I put boning in the “nose” piece to give it shape.What I love about all the costumes in this film is that each of the characters have such a distinct and dramatic silhouette. The Bandit is very fitted and narrow on the torso, but from the waistdown he has samurai pants and then on his head he has a mask and a wide brim hat. More than any of my other costumes I felt this one could change so much depending on the combination of accessories and what stance I assumed.-Courtney Coulson
#DailySketch Rocket, Groot and Tellos.
Every year, August 12th rolls around and I think the same thing. How did another year pass. It’s been 7 years now. Doesn’t seem possible.
Today’s piece is for Mike Wieringo, one of the masters of talking animals. Miss you, buddy.
You see us as you want to see us: in the simplest terms and in the most convenient definitions.
"If you need me, me and Neil’ll be hangin’ out with the dream king.
Neil says hi!”
DREAM from Sandman by neil-gaiman!
THIS IS FANTASTIC
All time best comic.
agreed!*strokes her collection*
OH WOW!!!!!!!!!!!!!!!! Absolutely gorgeous!!!
50 Shades of Grey was originally fanfiction based on the Twilight series, which was then published as a novel (along with 2 subsequent books). It sold over 100 million copies around the world and topped best-seller lists everywhere. It’s about to be adapted into a film, set to come out early next year.
It follows a college student named Ana Steele, who enters a relationship with a man named Christian Grey and is then introduced to a bastardised and abusive parody of BDSM culture.
While the book is paraded as erotica, the relationship between Ana and Christian is far from healthy. The core mantra of the BDSM community is “safe, sane and consensual”, and 50 Shades is anything but. None of the rules of BDSM practices (which are put in place to protect those involved) are actually upheld. Christian is controlling, manipulative, abusive, takes complete advantage of Ana, ignores safe-words, ignores consent, keeps her uneducated about the sexual practices they’re taking part in, and a multitude of other terrible things. Their relationship is completely sickening and unhealthy.
Basically, “the book is a glaring glamorisation of violence against women,” as Amy Bonomi so perfectly put it.
It’s terrible enough that a book like this has been absorbed by people worldwide. Now, we have a film that is expected to be a huge box-office success, and will likely convince countless more young women that it’s okay not to have any autonomy in a relationship, that a man is allowed to control them entirely. It will also show many young men that women are theirs to play with and dominate, thus contributing to antiquated patriarchal values and rape culture.