In 2010 Ben-David Barr, Ph.D., the executive director of the Rainbow Community Center in Concord, started getting sick, but his doctors were unable to figure out why he was ill. Five years later he was diagnosed with Waldenstrom macroglobulinemia, a rare form of non-Hodgkin lymphoma.
"I have too many white blood cells, so they actually attack my own body," explained Barr, 57, who lives in Point Richmond.
His body has responded well to immunotherapy treatments, allowing Barr to yet begin chemotherapy, which he will eventually need.
"I am pushing it out as long as I can," said Barr, adding that his plan is to "try to do the least invasive treatment as long as possible."
The experience, which until now Barr had kept largely private, only telling family, friends, and close associates, has been similar to what he has seen his friends and others living with HIV cope with as the virus damaged their immune systems. Having worked as a social worker for many years in the medical field, Barr said dealing with his own health issues these last seven years has been a humbling experience.
"To go from a person who is a helper to a person who needs help is ... it sucks. I don't know any other way to say it," said Barr in a recent interview with the Bay Area Reporter.
Through it all he continued working, not only overseeing the center that serves LGBT residents of Contra Costa County but also as an adjunct faculty member in the school of social work at Cal State East Bay. But he recently made the decision that it was time for him to step down as executive director of the center to focus more on his health and spend time with his family.
He and his husband, John Peterson, an engineer, have three adult children and four grandkids in Salt Lake City, where the couple grew up. They will be spending the holidays in Hawaii the next two weeks.
"As much as I would like to keep working - I have always been a workaholic - but I just can't do it anymore," said Barr, who does plan to continue teaching part-time. "It is time for me to learn to do a much better job of taking care of myself and taking time with my partner and kids and grandkids. It is time to really make sure I am here for my family."
Barr announced the news of his retirement, which will become effective sometime next month once the center has hired an interim executive director, and revealed his fight against cancer in an emailed letter to supporters and clients of the Rainbow Community Center sent on December 7.
"It's been a difficult situation, but it has also been a chance for me to see another side of Rainbow," wrote Barr. "You see, I always knew we were an organization filled with great people, but since I've been sick I have seen my colleagues with new eyes. They have so much kindness and compassion."
Transformed Center
Friends and colleagues said Barr will be greatly missed and is leaving behind a transformed center. When he started as executive director, the agency had an annual budget of $100,000, whereas today it has a $1.2 million budget, the majority of which comes in government funding to run programs for LGBT youth, seniors, and people living with HIV and AIDS. This summer it opened a satellite location in El Cerrito to better serve LGBT residents in West Contra Costa County.
"I am proud of his leadership over the years," said gay El Cerrito City Councilman Gabriel Quinto, who this week became his city's first LGBT and Filipino mayor. "What he has done in Contra Costa County, where we were not organized, he organized the whole county to make sure we had a presence in Contra Costa."
Contra Costa County Supervisor John Gioia had noticed that Barr had lost weight recently but was unaware he had cancer. His remaining on the job for so long speaks to his commitment to the center's mission and clients, said Gioia.
"I think with him it is always more than just about himself, it is about the larger work," said Gioia, who helped launch the RYSE Center for youth in Richmond that then partnered with the Rainbow Community Center to provide programming. "We will miss him in his role, and I think he will have left the organization in a good place."
He praised Barr for raising the LGBT center's visibility and reach within the sprawling county, which extends from the Bay inland to the foothills of Mount Diablo.
"He has been a great advocate to bring and ensure culturally competent services to the LGBT population," said Gioia. "The fact he has been successful in improving and expanding services that is a testament to his leadership. It will be big shoes to fill."
Gay Pleasant Hill City Councilman Ken Carlson, president of the LGBT center's board of directors the last two years, said Barr's stepping down will have an impact but that he is leaving the center on good footing as it works on a new strategic plan for its future.
"I don't want to sound overly dramatic, but it definitely will have an impact because he has done so much work there," said Carlson. "The work he has done there, he has made it an easy transition for the next person to come in. It is more a matter of finding the best candidate who can take on the work."
The board has already interviewed candidates to become executive director on an interim basis and expects to offer the job to one of them and begin contract negotiations this month so the person is in place after the new year. It should wrap up work on the center's new strategic plan this spring and would like to have hired a permanent executive director within six months.
As for Barr, he is "one of the most courageous people I know," said Carlson.
"You have to have tremendous courage and strength to go through that and keep an organization running like that. That is no small feat," he added. "The center has grown significantly the last decade with him at the helm. It has been exceptional to see the center grow and develop and provide the services really no one else provides. With the changes in politics over the last year, being able to supply the services we do that are no longer provided, and with that focus on a marginalized community, it is huge."
Having relocated the center closer to Concord's BART station and opening the second location will be highlights of his time as executive director, said Barr, while the lowest point came when the facility was vandalized and broken into four times over 10 days by thieves who stole $30,000 from the center and another $30,000 from its donors.
"It was an incredibly stressful time. Our computers were stolen," recalled Barr. "We had people using the center's checks at casinos. They tried to take about $30,000 out of our account. It was all returned but it took months."
As he and his partner have no plans to return to Utah, Barr said he will continue to support the center but intends to not get in the way of the new leadership.
"Nobody does this work alone. I really appreciate all the people I had an opportunity to work for, both the board, staff, volunteers and community members," he said. "It has been a great experience. I am really grateful I got to be a part of it."