Disa Johnson knows that running the Honolulu Marathon in December will be an incredibly emotional 26.2-mile journey, starting at 5 a.m., that Sunday morning and, hours later, finishing steps from the world-famous Waikiki Beach.
Her goal is simple: to just finish.
Johnson, 43, who lives in Chicago's Andersonville neighborhood and is the owner of SearchReturn LLC, is running her first-ever marathon, which will be an emotional challenge, not just a physical grind.
She is running in honor of her father, Keith Leroy Johnson, who was diagnosed with HIV/AIDS in 1983 and died from the disease in 1986.
"I learned [ he was sick ] in 1983 and was devastated," said Johnson, a single, transgender bisexual. "My dad was gay and, at the time, I knew my dad was a little, ugh, quirky, but I didn't know he was going to die of AIDS.
"AIDS was a death sentence back then and I knew it was going to affect our whole family."
Johnson said her dad was, "one of the first to qualify for AZT treatment, but it was already too late; it was useless for him at that point.
"It's been 25years [ since my dad died ] and yet it seems like yesterday. I almost want to cry now. I think the world has evolved enough to the point where people are complacent about AIDS. That's not good."
The elder Johnson's death from AIDS was among the first 10,000 documented Americans to die of AIDS, she said.
AIDS has "permanently changed" her life, to incorporate "so much of [ my ] attitude and thinking," she said.
Johnson said she is both "excited and scared" for the marathon, which she is training for with the Team To End AIDS ( T2 ) , the endurance-training program of the AIDS Foundation of Chicago ( AFC ) .
"It's exciting to run my first marathon and scary that something might stop me from finishing," she said. "I want to take part in activism now that I can; I'm less concerned about [ my ] career at [ age ] 43.
"I had physical abnormalities, which I was born with, although after my initial surgery, I led life as a straight man," Johnson said. "I switched sex and orientation at age 40 to include both sexes in life and exploration. I think, if genetics played a role in my orientation or brain gender map, it allowed me a certain freedom of thinking which others lack, or obstinately reject."
Johnson also is running her emotional marathon with the memory of her late sister, Susanna.
"Even though Susanna's death is unrelated to AIDS, as part of this run, I will be holding her memory in my thoughts as well," Johnson said. "Primarily, I am running to raise awareness about AIDS with the memory of my dad. Susanna's death by a disease that my brother and I carry was altogether different and just as devastating on a personal, familial level."
For more information about Disa, go to: www.disajohnson.com