I have always said, "If I ever stoop to giving cheap advice in my column, take me out back like Old Yeller." I have also never been one to engage in shameless self-promotion. It's not that I don't adore masturbation, but, you know, if I have my druthers, I prefer other consenting adults toot tooting my horn. Okay? Hey, beep beep! Alright? So please don't be alarmed and dig out that shotgun you save for special occasions (like Thursday) when it appears that what follows is both the cheap advicing and the masturbatory tooting I purport to loathe. Because it's not. Because I said so. And really, I'd like to spin this more as an exercise in "sharing" and/or "caring." I'm confident Ari Fleischer would be on board with that.
For the last millennia I have been working on a project developed by the Chicago Department of Public Health called "The Faces of AIDS -- Personal Stories from the Heartland." The Faces of AIDS is a series of books (the second is due out the end of May), and a companion traveling photo exhibit. As the title implies, the project documents people's voices, stories and experiences "from the compelling to the commonplace, always honest and human" living with or impacted by HIV in the "Heartland," a sort of modified Midwest.
It's been the greatest privilege to be one of the writers collecting these stories. The strength and beauty I've witnessed, the insights I've gained, and the opportunity for understanding I've been given I can never be thankful enough for. From Tulsa, Oklahoma to Topeka, Kansas, from Lincoln, Nebraska to Springfield, Illinois, the same sets of themes kept appearing.
Church, spirituality, doing for others, and attitude, "making the best of what could be tragic and devastating," these are as important to health and survival, perhaps more so, than rigid drug compliance, doctor visits, or even eating right.
"The strength and beauty I've witnessed, the insights I've gained, and the opportunity for understanding I've been given I can never be thankful enough for."
"It's a blessing, HIV has changed the type of person that I am," says Mia in St. Louis. "It made me a totally compassionate person, because I was a bitch, big time. You could have your heart falling out of your chest in sorrow, and I'd be, 'So? This has what to do with me?'"
"I have osteoarthritis and a lot of other things that go along with being 50, with neuropathy and all these little combined side effects," explains Mike, who lives in a town called Ardmore, Oklahoma, not far from the Texas border. "I was coming back from the altar rail [in church] once and almost fell. It was like I passed out, I stood up too fast. But I never touched the ground. There were so many hands to catch me. Where else could I find that?"
Father Jim, a gay, HIV positive priest in Tulsa, makes his point succinctly. "The people who survive are the ones who don't just sit and say, 'Oh I've got AIDS, come and feed me, come and take care of me.' They are the ones who get up and take care of each other. The joy of being able to do that sort of fills in the anguish of being sick."
Trever lives in Norfolk, Nebraska and speaks about his HIV and drug and alcohol addiction to upwards of 4,000 youth a year. He's had doctors refuse to work on him because of their religious beliefs "Trever is gay, and that's a conflict of interest." Sharing his story, doing something, fills in the anguish Father Jim mentions. "Every time I share my story it reminds me of where I was," he states, "and helps me to realize where I am now. Today I have people calling and asking for me to speak. I have a God that I understand and that loves me for who I am, that doesn't hate me like I always thought. I'm rich. Being rich is not about having 50,000 dollars in the bank. Riches are making a difference in people's lives."
JoAnne in Chicago says, "You make lemonade. This is the hand you're dealt, you deal with it. I've learned to be happy with what I have."
And Laura in Oklahoma City sums it up. "Instead of 'why me?', I turn that question around and say, 'why not me?' I'm willing to take a stand and say, 'I've got HIV, and this is how you can prevent yourself from getting it.' I use myself as an example. If I wasn't able to turn that around, I'd wallow in self-pity. It keeps me sane. Attitude has a lot to do with your physical being. If I didn't have this outlet, I probably would have tried to kill myself. Ya know, there are days when it's painful to walk because of my neuropathy. But because I have a purpose, I can rise above that pain."