The following tale is a difficult one for me to tell. Not because it's so awful, but because it happened to a friend whom I now consider family: Jean Ann Van Krevelen, executive director of Cascade AIDS Project.
Jean Ann said I could share her story with WW's readers in anticipation of CAP's art event this week. But, truth is, I've known about part of this story for almost a year.
"I feel like I am dying," Jean Ann told me last spring. Waylaid by an illness she couldn't readily identify, it was making it all but impossible for her to work or even get up in the morning. Jean Ann went from doctor to doctor trying to discover what was wrong, but with little to no success. She told me more recently—and this is the part I didn't know about—that it all reminded her of what happened to her cousin, Buzz, who, 15 years ago, came down with an illness that dare not speak its name in Van Krevelen's home state of Oklahoma: AIDS.
Jean Ann, an out lesbian, felt both her and Buzz, a closeted gay, were regarded with suspicion by doctors. But that wasn't the only thing they shared in common. "[I think] we both were ashamed to tell our families and friends that we were sick," says Jean Ann. "We couldn't stand the thought of being rejected. We were treated as outsiders and we felt desperate. I was desperate to get a diagnosis and he was desperate not to get one."
And that's where their stories part.
Both Buzz and Jean Ann looked for comfort in their families. According to Jean Ann, hers did everything they could to help, including making her dinner and making her move when she didn't think it was possible. Jean Ann was diagnosed this past fall with fibromyalgia—chronic, widespread pain combined with fatigue, which won't kill you but sure makes you feel like you're going to die. She's now on medication and looking to a future with less pain. She knows the disease is with her for the rest of her life, but she believes she can handle it.
That's not what happened to Buzz. "I didn't know that Buzz had AIDS until he was very, very sick," says Jean Ann—who found out through a friend, not from Buzz or his family. "I didn't say anything to him about it because I was too worried about upsetting the family. I felt ashamed about the whole damn situation, so I said nothing. And then he was gone."
Her memory of Buzz's death has left Jean Ann with a unique understanding of HIV/AIDS, one that helps her renew her compassion and commitment every day.
"I was left with a hole in my heart and a promise to never let anything prevent me from saying what I need to say, when I need to say it," Jean Ann says. She doesn't want to compare her own problems with the problems of those dealing with AIDS, but says she's learned a lot about managing a chronic illness. "That's the least I can do for Buzz."
19th Annual Cascade AIDS Project Art Evening and Auction. Oregon Convention Center, 777 NE Martin Luther King Jr. Blvd., 223-9255, cascadeaids.org. 5 pm patron event, 8 pm artist reception, Saturday, April 5. $100-$275.