The story of how Daniel Craft got to see an advance screening of next summer’s Star Trek movie in his own home days before he finally succumbed to cancer is one of sadness, hope, and inspiration. Throughout Daniel’s health battle his wife Paige Barr acted as the superlative caregiver, marshalling all available resources to help her chronically ill husband, including social media channels culminating in an exciting call from director JJ Abrams himself. Celebrity appeal and fanzine stories aside, Daniel and Paige embody the evolving roles of today’s ePatients and their eCaregivers, and demonstrate the power of communications technology to powerfully engage ever-expanding support networks. So let’s revisit this amazing tale from the point of view of digital health, and give it an unlikely, uniquely personal perspective.
Day at the Office
One afternoon toward the end of December, I was visiting my girlfriend’s casting and research company near Chambers Street in New York City where Paige Barr is an employee. She had been taking time off to care for her husband Daniel Craft, whose four-year fight against leukemia had become vastly more complicated with a recent diagnosis of an extremely rare vascular tumor, aggressively growing in his liver. Paige posted on Facebook, asking for a favor: Yet another hospitalization had forced Daniel to miss the opening week of Peter Jackson’s THE HOBBIT, a film they finally got around to seeing, but without the 9-minute STAR TREK: INTO DARKNESS teaser trailer originally shown with the movie. To most that wouldn’t sound like a big deal, but Daniel was an epic science fiction fan, a secret super-Trekkie who adored director JJ Abrams’ revitalization of the franchise, but knowing he would never be able to see the second installment in the series. So Paige, in her indefatigable and inimitable style, reached out to her friends, family, and coworkers: Could we spare some time and try and find the teaser online?
Paige Barr, George Takei (Sulu from the Starship Enterprise), and Daniel Craft, proudly mugging for the camera at the epic 45th anniversary Star Trek convention in Las Vegas, NV.
Always game for Googling-around, thinking Paige a super-cool chick, and having met Daniel at last year’s holiday karaoke party, I felt personally vested and stopped what I was doing to leap on Bit Torrent and other sites. But while I naively enough snooped around for the renegade download, far more enterprising and resourceful friends of Daniel’s took the request to a whole new level, within hours getting results impossible to imagine before the advent of social media: David, aka “ideeyut,” posted a plea to help his terminal friend out on the r/StarTrek board in Reddit, reaching out to not only find the contraband trailer, but audaciously enough ask if someone, somehow, could enable Daniel to actually see the entire movie before he died. Grady Hendrix, a fellow member of the New York Asian Film Festival (NYAFF) Daniel co-directed, confirmed that he knew Daniel and this was not a hoax, and to please, please help.
Daniel’s friend quoted Paige on Reddit, asking fans and industry folks for a way her ailing husband could see the film.
He implored people to spread the word, at least “upvote” the post, a way Reddit users crowdsource prioritization of news stories – the more votes, the higher the post appears in feeds, creating a positive feedback loop of excitement around specific content, the ultimate goal being the main page of the social network. (Reddit was just in the news due to the passing of its precocious, charismatic, controversial creator, Aaron Swartz.) But would this story, competing against millions of others, gain any traction? Even if the story got higher priority, that didn’t mean anyone would help. Through his tireless efforts at the NYAFF Dan popularized Jackie Chan and Jet Li in the States; fluent in Mandarin, he played “the evil white guy” in various Chinese television shows, his Warhol 15-nanoseconds of fame peaking as the bald guy dancing in KILL BILL Vol. I – After Dan had given so much of his life to the film industry, would the industry finally return the favor during his final days?
They did, as the post received more than 300 upvotes, enough for word to spread virally in a manner only social networks can engender. Facebook and Twitter also lit up, the story got some good press and sure enough word seeped through various channels both online and offline, quickly making it to the critical ones that culminated with a tap on a shoulder, a few cautious but emotional conversations, and an altruistic, fateful decision…
Wish Comes True
Within 48 hours of a sole, heartfelt post by “ideeyut” on a Reddit board, Paige Barr received a voice mail from none other than director JJ Abrams himself, making Daniel’s desire to see the 9-minute trailer instantly irrelevant – instead, the celebrated filmmaker offered Dan a personal, home viewing of a pre-production version of the entire STAR TREK: INTO DARKNESS movie itself. As Grady Hendrix, another friend of Daniel’s later posted on Reddit: “At a time when he didn’t have a whole lot to look forward to, r/StarTrek, JJ Abrams, Damon Lindelof, and Bad Robot performed a simple act of kindness for a total stranger.” That act of kindness arrived in the form of the unreleased film in a rough-cut version on a DVD, astonishingly hand-delivered by a studio producer right to their Upper Westside New York apartment.
Paige made popcorn while they filled out the requisite non-disclosure agreements, then sat down with Dan to watch the current, unfinished state of a major Hollywood motion picture six months before its official opening, an unprecedented experience that millions of fans the world over could only dream about. “Keep dreaming,” now smirks Paige, “because I’ll never tell. But what I can say is we enjoyed it immensely as a film and as a gesture… a heartwarming gift to our friends, family, and so many others.” Immediately after the screening Dan went to bed, exhausted, and never got out again. He died less than a week later in a hospice with Paige and his brother at his side. Dan was 41. Paige asked if he was OK. “Are you in pain? Do you have to go to the bathroom?” Dan responded: “I’m going into the future…”
Grady posted on Reddit after his friend died: “Dan was pretty clear that he didn’t want to be the inspirational cancer story of the week, but I wanted you all to know what you had done, and how much it meant … it made a huge difference to Dan, his wife, and his friends … You should all be proud of yourselves.”
Despite Dan’s desire for his warp speed tale to stay under the radar, the press nonetheless erupted with this “feel good story” of the week. Articles appeared in Hollywood Reporter, the Los Angeles Times, Huffington Post, Mashable, the likes of Perez Hilton’s blog, ABC News, and recently in Entertainment Weekly, among dozens of others. But as Susan Feldman, Paige’s coworker mentioned, “the good news is all this buzz could further encourage influential people to sincerely reach out and help like Abrams did.” The director, with nothing to gain, took the risk of sharing some of the hottest content in Hollywood. No stranger to such a gesture, in 2008 Abrams contacted a terminally ill college professor and gave him a cameo role in his first Star Trek movie. Regardless, these stories concurrent with and following Dan’s last experience were broadcast media annotation to the social media whirlwind that got the job done, and indicative of how emotionally resonant Dan’s ask and its fulfillment was – not only to the science fiction and film communities, but everyone interested in supporting those in need.
Evolution of the eCaregiver
Friends, family, and even trained professionals have historically supported the ailing, but today’s caregivers face entirely new challenges and opportunities. One area that has not gotten nearly the attention it deserves is that of the “young caregiver,” those middle-aged and younger who must support loved ones while they themselves need to work and continue their own busy, productive lives. Gen-Y and beyond, many are also digital natives, having grown up or into today’s social media tools and resources, unabashedly using them to engender additional encouragement, and create support networks throughout the world.
Paige was the epitome of this “eCaregiver,” using her skills as a casting director and researcher, and her innate abilities and enthusiasm for connecting with people to help Dan every step of his treatment journey. “Paige is amazingly adept at getting total strangers to do things,” smiles her Creative Director, Jill Strickman-Ripps. “I would send her on street casting assignments no one else could or wanted to do, such as stopping people on the street and asking them to do awkward things on camera, like give her ten pushups, or shave. Paige is a natural performer and motivator, making people feel at ease even under the strangest circumstances. She used those same skills and the channels available to her to help Dan.”
“I use everything I can to create community and support,” adds Paige. “I tapped into specialized social boards for patients and caregivers fighting the same rare form of liver cancer. And while Dan was getting his bone marrow transplant to cure his leukemia, I applied what I learned on my casting job to reach right out to celebrities, comedians, anybody who meant something to us. I even got a woman I ran with through our fundraising efforts to do a ‘cheer’ for him; she’s in finance and she was a bit horrified but still joyful. My goal was to create and present a video every day or every other day to cheer Dan up, since two months can be a long, long time in a hospital. Now I’m writing a book that hopefully can help other caregivers. It’s based on my experiences, focused on young people who have to care for their sick spouses. We need to work, pay rent, stay active. We need to find as much emotional support as we provide, so have to use the most efficient and effective communication and sharing tools that are out there. Through them we can make the connections we need, surprise ourselves and others by what’s possible. For years Dan gave so much to film. I’m so happy that with our efforts film was able to give something back to Dan.”
Flights of Angels
Paige uses Facebook and other channels to spread the word for her fundraising efforts at the Leukemia and Lymphoma Society (LLS), too. As Tim Caldwell wrote on her Wall: “When I found out Daniel was the one who was at the center of the recent Star Trek screen story, I thought, yeah, that is one lucky man. Not because he saw the movie early, even though that was pretty damn cool, but because his wife moved Heaven and Earth for him because of love. In honor of love, and courage, and hoping against hope, how about helping out Paige’s Team in Training fundraiser? Pass it on.”
Daniel and Paige helping to raise awareness for the Leukemia and Lymphoma Society (LLS).
That “pass it on” lies central to the power of social media, a formidable tool indeed when in the hands of today’s eCaregiver, like Paige and the thousands of others who fearlessly and energetically inspire angels to sing.
Help Paige with her current fundraising efforts, be on the look-out for her caregiver book, and leave you own thoughts and feelings below…