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Maurissa Tancharoen - "Lupus Now" Magazine - Lupus.org Interview
jeudi 5 avril 2012, par Webmaster
Warrior Princess : Maurissa Tancharoen Whedon finds support through friends and family
by Heather Boerner
On a Monday morning in early August, the sun was on its way to heating the Los Angeles basin to a glorious 80 degrees, but 36-year-old Maurissa Tancharoen Whedon was shut inside her home. Her dancer’s legs were clad in loose-fitting sweatpants and propped on a footstool. They were still slightly swollen from the edema that had puffed them up to four times their natural size.
At least she was out of the compression stockings she had been wearing since April, she reminded herself. She also tried to focus on hair she still had two months after she began the chemotherapy infusions meant to stop her immune system from attacking her kidneys. Never mind that her dark, glossy hair used to fall to her mid-back. On this day, what hair remained was bundled in a small knot on top of her head. She also was trying not to think about the ache in her kidneys, the grogginess in her head, the fatigue that weighed down her limbs.
She’d made it through worse. The chemo was doing its job, and her kidneys were starting to function again. She didn’t need her husband to carry her up and down the stairs anymore.
But frankly, she was tired. Frustrated. Fresh out of lighthearted optimism.
Fed up with thinking about all the ways lupus was affecting her body, she focused on her computer screen. Gmail showed a new message from Nirvana Adams, a friend whom Tancharoen Whedon—Mo to her friends—hadn’t seen in months. As always, Adams’ greeting made her smile.
“Hey Lovely !” Adams started, and then she got to the meat of things. The Los Angeles Walk for Lupus Now® was seven weeks away. Would Mo mind if Adams and their mutual friend Amy Smith started a team in her name ?
“Would that be okay ?” Adams asked. “We’ll try to make a good name.”
Suddenly, all of it hit her : the “whack-a-mole” nature of her disease, which had manifested first in her teenage years as a bright red rash all over her body, then as central nervous system lupus, then pulmonary vasculitis, and now as diffuse proliferative lupus nephritis, which attacks her organs without warning and has stranded her at home, climbing the walls with boredom and fear. Maybe she wasn’t as isolated as she was starting to feel, she thought. She raised her hand to her cheek, but the tears kept coming.
“Oh honey ! You made me cry,” she responded 30 minutes later. “I’d be honored.”
The previous day, Adams and Smith were celebrating Smith’s husband’s birthday, and their conversation drifted to lupus. Both had friends with the disease aside from Mo, and Smith had participated in the Lupus Walk in 2010. She planned to walk again this year. So did Adams, with another friend who has the disease.
“Hey, we should start a team for Mo,” Smith suggested.
Adams nodded, but thought it would just be the three of them : herself, Smith, and her friend Nicole. They set the team fundraising goal at a modest $5,000.
“We did not know what we were getting involved in when we started this thing,” Smith says.
On Aug. 4, Adams was sitting in front of her computer staring at the Walk for Lupus Now® home page. Her mouse hovered over the “Form Team” button.
Then an alarm bell went off in her head.
“What am I doing ?” she wondered. “Anyone could join this team.”
Mo—they decided to call the team Club Mo—is a “little ball of light,” Adams says. Mo attracts funny, smart, sometimes famous people, a byproduct of her own life in the spotlight. She was in Michael Jackson’s movie Moonwalker as a child. She sang in a Motown band at age 14. She wrote for and acted on Fox’s Dollhouse. She dances, sings, and writes lyrics. She won a Streamy Award for writing Dr. Horrible’s Sing-Along Blog, a hugely popular Web series directed by brother-in-law Joss Whedon of Buffy the Vampire Slayer, Firefly, Serenity, and Dollhouse fame.
Oh, God, Adams thought. Joss has a lot of fans—and all of them would want to join. Then there were Mo’s friends, like Felicia Day, the star of the Web series The Guild and Syfy Network’s Eureka. Nathan Fillion of Firefly, Serenity, Dr. Horrible, and Buffy. Eliza Dushku of Buffy and Dollhouse. And Mo’s brother, Kevin Tancharoen, director of 2009’s Fame and 2011’s Glee : The 3D Concert Movie. The list of cult icons and pop culture luminaries went on.
Though Whedon fans are notoriously respectful and supportive, many of Mo’s friends had had run-ins with overzealous fans.
“Now I’m going to have to be a bodyguard ?” Adams, a script supervisor who met Mo on the set of Dr. Horrible, remembers thinking. “This could be big.”
She brought her concerns to her friends. After rounds of email between herself, Adams, and Mo, they constructed an invitation : If you know Mo personally, join us and raise money. If you’re a fan, please donate ; don’t walk.
She clicked “Form Team.”
Felicia Day was on the set of Eureka when she got Adams’ invitation to join Club Mo. She was between takes and paused. She’d met Mo while working on Dr. Horrible and considers Mo one of her best friends.
She’d never met anyone with lupus before Mo and once thought of it as the punchline on the TV show House—almost a tagline, because whatever the patient has, it’s “never lupus.” Now, Day is indignant at what she sees as the media’s light treatment of the disease. She was “invested,” she says.
And the Walk ? She was all in.
She uploaded a picture of herself and Mo huddled together and then did what she normally does. She turned to Twitter—and her more than 1 million followers.
“I’m participating in my first-EVER charity walk, for lupus,” she tweeted on Aug. 4. “Love your support.”
Within an hour, the fundraising thermometer on her walker page blew up. She’d already surpassed her $2,000 goal for the Walk. Within two days, her fans had donated $5,000.
Club Mo, it seemed, was off to a good start.
“Tears of joy are streaming down my face right now,” Mo wrote on her blog the next day. “I have the most amazingly wonderful friends.”
The blog, itssonotsexy.tumblr.com, debuted in May, a few weeks after her kidney flare began, and it focuses on her experience with the disease. Although she had never been shy about telling people her diagnosis, she also had worked hard not to define herself by it.
That often meant she didn’t talk about the disease much when she wasn’t in a flare. Now she was, and discretion seemed pointless.
“It took me forever to grasp that acceptance is the most essential part of healing,” she explained in her first post. “So I’m finally putting it all out there. Am I scared ? Yes. But I hope that this venture will help those who live every day in constant battle with their own bodies. Like me.”
So when, in August, donations to Club Mo poured in, she turned to her blog and did something she never thought she would. She’d always donated to causes, but never walked. This time she would lace up her sneakers and grab her sun hat.
“If I get the go-ahead from the doc, I will be walking my ass off,” she told her 2,000 readers. “We will be in our snazzy purple T-shirts. We will look awesome.”
Most important, she would be with her friends.
“There have been times when I’ve succumbed to feeling hopeless or just plain angry about all of it. And alone,” she wrote. “Then there are moments like these that remind me that I’m not alone.”
Meanwhile, Jed Whedon, Mo’s husband, sent a short note to Adams with one message : Thank you.
“With her going for chemo treatments, they just had no time to put anything like this together,” Adams remembers. “They were spent.”
For Jed, lupus had grown from an inconvenience for his wife to a catastrophic threat to their joke-filled, joyous marriage. Although he looks with pride at the way his wife handles the edema, the chemo, and the pain, he knows they’re both strained by the disease.
There are moments when Mo is sleeping that he leans over and checks to be sure she’s breathing.
“It’s weird to like it when your wife is snoring,” he says, “because then you know she’s OK.”
For both Mo and Jed, this walk came at the perfect time.
“Let’s do this,” he remembers thinking as he set up his Walk page. He urged people to give a tiny bit—and by a tiny bit, he meant a boatload. His goal : Be one of the top 10 walkers at the event.
He wasn’t driven by hubris. It was rage and frustration—at how lupus attacked without warning, even though Mo had done nothing to provoke a flare. He added a picture of himself and Mo looking into each other’s eyes, his face intent on his bride.
“Money is the best way to help,” he explained on his page. “Money means research, and research means better treatment or even someday… dare I say… a cure.”
The race was on. Joss Whedon got his invitation while on location in Albuquerque for The Avengers and though he’s “never walked except to get somewhere,” he didn’t hesitate to join.
“Mo is gorgeous and great at everything and somehow still nice,” he says. Like his brother, he was angry—that Mo should have to “put away” the dancer part of herself because the disease was attacking her body. It seemed intolerably unfair.
For the first time ever, he says, he raided his contacts to drum up donations.
When he donated to the Walk in their brother Zack’s name instead of Jed’s, Jed picked up the phone. Joss swears it was an innocent mistake, but Jed had been checking the numbers all week.
“C’mon, man, I’m trying to win this thing !” Joss remembers Jed saying.
Zack, who ended up being the No. 4 walker with $5,600 raised, just shrugged and said, “You gotta want it.”
The Walk team took on a life of its own.
Fans emailed daily to join, and Adams gently probed their motivations. People who had a connection to lupus became part of Club Mo. She encouraged the rest to show their love with a donation.
Jed and Mo’s friends at Jamaica’s Cakes entered a cupcake contest to raise money for lupus awareness.
Then Adams and Jed got to thinking about team T-shirts. They contacted Shawna Trpcic, the costume designer on Dr. Horrible, and asked if she had thoughts on a logo. Trpcic and her husband, Joe, started toying with ideas that riffed on Captain Hammer’s shirt from the Web series.
On set, Adams fielded rounds of logo mockups until finally they came up with the right image : Mo’s face scrunched in a tough-girl snarl, fists raised for a fight. Above it, the team’s name. Below it, “Never Surrender.”
Kim Evey, Day’s producing partner, piped in with where they could get T-shirts and placards donated.
“It felt just like we were all working on another project together,” Smith remembers thinking.
What started as a group of three or four people became 87 registered walkers by the day of the Walk.
Day and others continued to promote the Walk on Facebook, Twitter, and other social media. Donations poured in from as far away as Australia. Hollywood heavyweight Judd Apatow donated $5,000. “How did he even hear about us ?” Adams wonders.
By mid-September, Club Mo had raised $70,000.
All along, people who’d never heard of lupus learned about it and the drive for a cure. Walkers met others affected by the disease.
“It seemed like every person I talked to about this Walk knew someone or was related to someone who has or had lupus,” Smith says. “This Walk brings people together to talk about what’s really going on.”
Mo, whose kidneys were continuing to improve, had something new to think about. She found herself checking the team page three times a day to watch the team break its own fundraising record. She wept over friends’ tributes to her on their Walk pages.
For the first time in a long time, she was legitimately looking forward to something.
The day of the Walk, Joss arrived before everyone but Smith and Adams.
“I was worried I wouldn’t get a T-shirt,” he says. It sounds silly, he knows, but Jed had jokingly told him he wasn’t getting a shirt because there weren’t enough and Zack had raised more money than him.
So he was there, clad in his Club Mo shirt, as the walkers streamed in. There were colleagues from Dollhouse and from Dr. Horrible. Mo’s parents arrived, as did her brother and his girlfriend. Then Zack arrived with his fiancée. There were people Joss didn’t know, people on other Walk teams with their own loved one affected by the disease. It was a sea of purple.
Mo and Jed were running late. Her doctor gave her the green light to walk, but mornings were slow going, full of fatigue and pain. Mo was three weeks out of her last chemo treatment, so she was OK to be around people and their germs. The swelling in her legs had finally disappeared. In the rush to get out the door, Mo forgot her sun hat. They doubled back to retrieve it.
When the couple finally appeared, a wall of people wearing Mo’s face on their chests greeted her. Her face was on dog bandannas and on babies’ caps.
“People must think I’m such an egomaniac,” she jokes.
But then she didn’t care, because her friends and family were there, along with people from high school and people she worked with briefly years ago. Fans from the Web site Whedonopolis who had personal experience with the disease milled around. One couple delayed their return to England to walk with the team. The Whedon brothers were there. It was like her birthday—but it was better than any birthday.
Before the Walk started, Kevin Tancharoen looked around at his parents and aunt resting in the shade of the booth and his sister mingling excitedly with her friends, sampling the cookies and brownies. People were speaking, wedding-video style, into a camera hoisted by one of Day’s assistants. That’s when it hit him : His sister was loved as much as she deserved.
“It’s one thing to know she has a lot of friends,” he says. “It’s another to see them wholeheartedly supporting her in an event like this. You don’t get an opportunity like that every day.”
As the Walk wound down, everyone joked that it seemed shorter than three miles. Not Mo. After a mile, Jed brought her back to the booth to ensure she didn’t overextend herself.
Even amid the joy and celebration that followed—the dance party that erupted between booths, the handshakes from walker to walker—the fact of Mo’s disease remained.
“It’s such a positive and festive event that you can forget for a moment that this isn’t something that’s theoretical in Mo’s life,” Joss says. “She lives with this every day.”
In the weeks after the Walk, Mo returned to her home office and got to work on songs for the Dr. Horrible sequel. Her doctor ordered more chemo when her recovery hit a plateau, and then changed her regimen when it became clear that the drug wasn’t working. Meanwhile, donations kept coming in for Club Mo. At press time, the team had raised nearly $80,000.
This is the other power of the Lupus Walk, says Joss. The battle for new drugs continues. People see that. They aren’t stopping.
Neither will Club Mo. General consensus is that the team will be back this year, assuming Mo is up for it. Jed is already worrying that the team may not reach the same heights. His mom set him straight.
“Are you kidding ?” he remembers her saying. “We’ll raise twice as much.”
The Lupus Foundation of America’s award-winning magazine, Lupus Now, is published three times a year : Spring (March), Summer (July), and Fall (November). This full-color magazine is the only publication of its kind in the country, and offers information on all aspects of lupus, with tips and advice for living your best life. Regular columns include Ask Dr. Paul, Drug Spotlight, and Foundation News. Each issue carries stories about people facing the challenges of lupus, Wellness features, and clinical trials seeking participants. Consider purchasing a subscription now and help support programs that benefit all people affect by lupus. A subscription also is included as a member benefit when you join an LFA chapter
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