Montclair, CA. 1998
Michael Sexton had lost a step in gym class. He was undersized for 9 years old but what he lacked in size, he made up for in quickness. Michael sensed something was wrong. In just a couple weeks he had fallen back from being the fastest kid in class to the slowest. And he had developed an odd habit of walking the tips of his toes. The doctors suspected it was the early signs of muscular dystrophy but the tests came back normal. Growing pains.
A few months later, special walking casts had been placed on his legs to try and fix this walking-on-his-toes thing. The cast provided a continuous stretch to strengthen the calf and the doctors hoped it would put him back on his feet properly again.
Elementary school is no place for a kid with casts on both his legs. He walked with an obvious limp. He deflected the teasing with humor by telling the kids in class his parachute didn’t open in time. But some kids teased Michael not only verbally, but physically. Because Michael walked on the tips of his toes so much, he was an easy target for tripping. Kids would kick his heels or sweep his toes and down he went. It was a daily ritual for the bullies.
One day, a boy named Nelson sat down and started talking to Michael about computers. They both loved video games and had both independently figured out how to bypass the library’s security system so they could secretly play Oregon Trail on the library computers. A pudgy bully named Andrew approached the table. Another wave of abuse was imminent, “Hey dummy-”
“Stop.” Nelson said, firmly, “You’re done teasing my friend. Leave. And tell your butthead friends to leave Michael alone, too. Or else.”
Nobody had stuck up for Michael like that outside of his family. It was amazing. Nelson introduced Michael to his friend Bryan. The three became best friends through elementary school and the two steadfastly protected Michael from bullies. But eventually Elementary school ended and a diagnosis arrived. It wasn’t good.
Michael had Sarcoid Myopathy. It’s a disease rarely seen in children that attacks your muscles. The muscles become increasingly weak until they lose all their strength, like an elastic band after it’s been through a hundred washes. There is no cure for the disease and it is nothing short of relentless as it attacks and breaks down muscle tissue. Michael is the only documented case in America since the early 1970s.
Middle school left Michael exposed again. Nelson had moved across town and attended a different school. He was bullied, sometimes by misguided teachers. “There were times when we’d run in gym class. The teacher would make everybody run behind me and not pass me because we ‘had to strengthen our weakest link.’ That was embarrassing. I would eat lunch in the computer lab to avoid kids tormenting me. I was sleeping a lot because I was so fatigued. You know how you have dreams when you’re running from danger but you can’t escape because you’re running in slow motion? I would have those dreams and wake up and my legs would be numb. The feeling would return but it seemed to take more time to recover after each episode.”
Michael skipped the adolescent milestones. Michael’s grandmother Flo gave him a car for his 16th birthday. He didn’t have the heart to tell her if he tried to drive it, he would seriously hurt somebody. He never had a first date. “However, I’d like to note that my physical therapists were hot.”
(edit: Michael actually dated a really cute girl from Urban Outfitters. Well done, buddy)
Then one night Michael woke up from another nightmare and the feeling in his legs didn’t return. He felt as if he was going paralyzed, and he was. He felt the numbness spread up his chest from his legs. Michael had contracted Neurosarcoidosis, an extremely rare form of Sarcoidosis that attacks the nervous system. “In my case, doctors believe it caused my stroke and coma.” Michael rolled out of bed onto the floor and army crawled to his parent’s room. He collapsed at the foot of their bed, temporarily paralyzed.
October, 2008
It was still blazing hot in Venice Beach the Friday before Halloween. Not that there are really seasons in Los Angeles, but it was scorching, even at the beaches. I lived in a small townhouse with my cousin, Rick, on the Venice Canals. There’s something so calm and communal about the historic Venice Canals. The ached bridges and bungalow-style homes draw hundreds of thousands of visitors to its narrow sidewalks every year. If you like your privacy, you don’t live on the canals. You get to know your neighbors quickly and there’s a sort of open door policy between many of the canal residents. At night, the wind dies down and the canals grow peacefully still. I’d open all the windows and stay up late, tinkering on my 2005 iMac, trying to be a blogger.
Earlier that year, my brother and I had created a cartoonish celebrity satire website called Derober. Derober was a failure but not immediately so – Derober bravely held its head just above the water for about a year before drowning, but it had taught us everything about blogging. Our new venture was a photoblog modeled after some of mine and Leo’s favorite Russian sites. We called it theCHIVE. That Friday, I was putting the finishing touches on something I called the Daily Afternoon Randomness. We had our sliding doors open and our neighbor, Stephen, dropped by for a beer. Stephen Czar is a good-looking architect, funny, smart, and socially active in the neighborhood. He was explaining the Diamond-Water Paradox, the paradox of value is the contradiction – that while water is more useful, in terms of survival, than diamonds, diamonds get a higher market price.
“Stephen, it’s Friday. Talk dumb to me.”
“Did you know you can buy a fishbowl-sized margarita at the Baja Cantina with an upside-down bottle of Corona in the goddam thing? They call it a Mexican Bulldog.”
“Sounds disgusting. Let’s go.”
The DAR had 20 photos. It got 17 hits. Probably from my family members.
November, 2008
Michael had graduated with honors and the highest academic award given in his high school, the Presidential Award for academic excellence. He wasn’t quick on his feet anymore, but he could still walk, and his mental acuity was sharp as ever. Early in the morning, Michael felt a headache coming on. Though he didn’t know it at the time, his brain was hemorrhaging. He was having a stroke – the Neurosarcoidosis and its ominous promise of a stroke had arrived, and it was dealing a near-fatal blow. Michael drifted into a coma. When he woke up, he was unable to walk and confined to a wheelchair. His muscles had all but given up. Michael had lost his independence. His first thought when he awoke was, “I’m alive.”
Fast-forward to Present Day, Austin, TX:
Every two weeks, Leo and I have a meeting with Chive Charities to discuss the potential Chive Charities candidates. The candidates are the product of Angie and Caitlin’s diligence. These meetings are, without a doubt, the most heartbreaking part of my week. Not all of the candidates will receive a grant. I’ve come to grips with the fact that we cannot help everybody, but there is little comfort in this knowledge.
Angie leads the meeting, “Our next Candidate is Michael Sexton.”
“What? Excuse me, Angie. Did you say Michael Sexton?”
“Yes, I believe you know him.”
2011, Venice Beach
The day we moved to the now-famous Venice Chive campus on the beach, we adopted the same open door policy we had in the canals. TheCHIVE office was never an exclusive place. I mean, who were we anyway? Bloggers. Have you met Mac? That child needs an outlet and if there’s some sucker willing to hang out with him while he tells his “adventure cat tales” so I don’t have to hear them, win win.
Thousands of Chivers would get tours during the weekdays and if you showed up on the weekend with beer or any brown liquor, you probably gained entrance to the weekend madhouse. theCHIVE was exploding. It had become an underground social network and the new office rang in an era of, well, extreme entertaining. As long as you held your booze and listened to Mac’s stories, you were fine to stay. Sleep on the couches if you need to.
By 2012, Chivers from the San Diego chapter were around often. Ron, Darryl, and Sara would come to challenge Doug and Mac at beer pong and lose miserably – those two idiot twins are pong professionals… The San Diego chapter was surging, throwing unofficial meetups for various charities all over Southern California. One particular meetup in Huntington Beach, Michael Sexton showed up. The Chive office had rented a party bus and drove from Venice beach to crash the event as well. Everybody met Michael and immediately gravitated toward him. Michael never wanted to talk about his disorder. He just wanted to enjoy the moment. It wasn’t long before Michael was a frequent visitor at the Chive HQ. He could come and go as he pleased. Open door policy was especially open to Michael.
Present Day:
“I didn’t know he needed help,” I said to Angie.
“That stroke ended his mobility entirely. His tiny house has become like a little hospital room. They’ve basically transformed their entire house into an assisted living facility. His bed is in the center of the living room. There’s no common space anymore. There’s no privacy. Any time he has to use the restroom, he has to ask his family to leave the room. His wheelchair is too wide for the doors. He has to enter through the backside gate because the front door is completely blocked off with medical equipment. The house is not handicap accessible, so there was no point in using the elevated front door. He’s trapped in there. The whole family is trapped, for that matter.”
“So, he basically needs a new house?” I asked.
“Well, a renovation to the garage at least if not MAJOR renovations to the house or both. And it’s California no less, where the permit process and construction costs add up so fast.”
Angie went on, “If we’re even going to consider this, we need to keep costs down in every possible way. You don’t happen to know an architect who would drop everything to design a house for Michael for free?”
Everybody laughed. I remembered those bygone days on the Venice Canals. “Actually, I do.”
Donate to Michael RIGHT HERE
UPDATE #1: $32,000!!
UPDATE #2 – something I forgot. For each of these campaigns, Chive Charities and the Chive Fund always leads out with a big donation.
It should be noted, and I can’t believe I forgot to mention this initially, that this massive renovation doesn’t just cost $50,000 but rather $150,000. Chive Charities has already donated $100,000 towards Michael’s project!
UPDATE #3: $42,000!!!
UPDATE #4: $50,000 raised in just over an hour!!! Hulk did smash. And now it get’s good…
UPDATE #5: $55,000
UPDATE #6: $60,000
UPDATE #7, $70,000!!!
UPDATE #8: $75,000! This is amazing.
UPDATE #9: We just hit $80,000!!!
Google
Facebook
