Inez Folsom’s decades-long relationship with AIDS Walk Boston began with a simple gesture: volunteering by cutting up fruit to nourish the participants of the 1987 Walk. A year later, Inez would begin walking herself. Ever since then, she hasn’t stopped.
Like many people throughout the Walk’s history, Inez has a deep personal connection to the AIDS epidemic. Her son, Mark, discovered that he had AIDS in 1989.
“He said he thought they’d have a cure in five years, but didn’t think he would live that long,” Inez recalls. Mark passed away in 1996 after 10 months in a coma. “His partner couldn’t give up, and he had the power of attorney,” she said. “That was very hard. I was concerned that he was in pain, but couldn’t communicate that.”
Inez is concerned that the media today no longer regards HIV/AIDS as a disease worth discussing, and that those who suffered and those who still suffer from disease are being forgotten. Part of this, she suggests, may be that even thirty years later, there is still a cultural stigma associated with HIV/AIDS that discourages people from openly discussing it.
“I think it is regarded by some as the lowlife disease,” she said. “When Mark had Kaposi’s sarcoma on his face, it was like being a leper. He wouldn’t let me see him without his theatrical makeup.”
Inez hopes that the attention that the current opioid crisis is generating will reinvigorate public interest in HIV/AIDS and galvanize a new generation to join the fight.
Today, many people living with HIV/AIDS feel alone and unsupported, sometimes even by their families, Inez noted. “I can’t think of any other disease that has that aspect to it,” she said. “So it’s encouraging for those infected to see all these people caring enough to do the Walk. And walking with other people – doing a good thing and doing it together – is satisfying and is fun.”
This year’s Walk is an especially meaningful one for Inez, as it marks nearly 30 years of involvement in AIDS Walk Boston and 20 years since the death of her son. It’s also the first year for her new Walk team, First Parish Arlington Social Justice. Despite the passage of so much time, Inez is proud to keep Walking on.
“I said I was going to do my last walk maybe about five years ago, but when the next year came, I couldn’t not walk,” she said. “It gives me a connection with Mark. I get to talk about him, kind of keeping him alive in a way, while helping other people with HIV/AIDS and their families find care and hope.”
In recognition of her decades of service to the AIDS Walk Boston community, Inez will receive the 2016 Bette Byrnes Award at this year’s Walk. The Award, names for a longtime supporter of the Walk, honors those who have been Walking alongside us for years.
Donate to Inez’s Walk team here.
Registration is now open for the 31st annual AIDS Walk Boston & 5K Run, which will take place Sunday, June 5, 2016. The event continues to be New England’s largest HIV/AIDS funding and awareness raiser, attracting thousands of participants who all walk for different reasons, but walk together for one common cause: to support AIDS Action and its work to prevent new infections, maximize the health outcomes of those infected, and end the epidemic here in Massachusetts. Please register today to walk, run, or donate.
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