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Friday, August 16, 2013

Start with yes: Survivorship the LIVESTRONG way 08-16



Start with yes: Survivorship the LIVESTRONG way

At the beginning of a cruise ship getaway with his family, Doug Ulman wanted to be anonymous.  Ulman, the president and CEO of the LIVESTRONG Foundation, told everyone with him, “For this week, if anyone asks what I do, I’m a lawyer.  I just want a week of vacation.”

But as soon as they got on the cruise ship in Florida, he broke his own rule.
A couple in their 60s, sporting bright yellow LIVESTRONG t-shirts, had stepped onto an elevator with the Ulman clan.  For a few seconds, Ulman remained silent while his family watched to see what he would do.  Finally, he said to the couple, “Hey, thanks for wearing that t-shirt.”
In the conversation that followed, Ulman discovered that the woman had survived breast cancer.  She, in turn, was ecstatic to learn of his affiliation with LIVESTRONG.  The small exchange between them built another piece of the community that Ulman has been nurturing for 12 years as the revered and internationally respected head of one of the largest cancer support organizations in the world.
Advocating for people with cancer is both a professional and a personal mission for Ulman, who was diagnosed as a young adult 17 years ago.  At that time, he felt isolated and bewildered as he dealt with the emotional and physical difficulties of treatment. 
“No matter who you are, no matter what your diagnosis, socioeconomic status, or level of education, you are immediately reduced to this level playing field with everybody else,” Ulman says about the moment of diagnosis.
“When I was diagnosed, the clinical side was challenging, but that piece was less problematic for me than the psychosocial and practical piece,” he says.  “The real gap in that experience, personally, was not having other people to talk to who were my age, and who had cancer.”
There was a distinct feeling of not knowing where to turn, recalls Ulman, now a three-time cancer survivor.  His response was to found, along with his family, the Ulman Cancer Fund for Young Adults to help other people his age navigate their cancer experiences and keep them moving steadily on the path of survivorship.
Today, as he heads up LIVESTRONG, Ulman remains committed to empowering cancer survivors with useful knowledge and connections to a supportive network of people who have been there.  Standard medical care does not reach far enough to help people with the complications of insurance, transportation, employment, parenting, or fertility that can arise after a diagnosis of cancer.
“No matter who you are, no matter what your diagnosis, socioeconomic status, or level of education, you are immediately reduced to this level playing field with everybody else,” Ulman says about the moment of diagnosis.  “You literally have no idea what to do.  Our organization is built around the notion that we help people now.  We aren’t looking for something that can help people five years from now.”
Ulman draws a distinction here between advocacy and fundraising.  A money-making enterprise can give generously, usually to a researcher in a lab coat who might find a cure, but it doesn’t necessarily provide compassionate and caring assistance to a cancer patient suffering from anxiety over how to function at work after chemotherapy.  LIVESTRONG advocates for that person by creating tools, services and programs with cancer survivors not for them. 
“We don’t exist to raise money,” Ulman says, “we exist to serve the needs of people with cancer.  If we ever lose that focus, we will end up way off course.”
In the past few years, Ulman has been a stalwart leader of LIVESTRONG, not only through the cycling controversies surrounding the organization’s founder, Lance Armstrong, but also through an ongoing, massive overhaul of the national healthcare system, which has split some diehard LIVESTRONG supporters into clearly defined camps.  “It’s been brutal,” Ulman admits, “and it’s going to get harder before it gets easier.”
Staying honest, upfront, and a little bit vulnerable in the face of such difficulties is the only way to keeping moving and to do whatever is best for people with cancer, according to Ulman.  It is the mentality of survivorship. 
Ulman calls it optimism, the tenacious belief that anything is possible.  “That is by far the best way to operate,” he says.  “It also creates huge challenges because you end up going down too many paths sometimes.  But I like to start with the answer being yes.