July / August 2011
by Regan Hofmann and Willette Francis
Minister Jae Quinlan, 49, Minister/Multimedia Artist;
Newark, New Jersey
I was at a drug treatment facility in 1989 for crack addiction when I became very ill. In nine days, I lost about 25 pounds. I had been tested for everything you could think of, and everything was coming back negative. I finally asked the HIV coordinator/educator if I could be tested for HIV. Her response was, “You’re a lesbian, right? And you don’t use intravenous drugs, right? So you’re in the lowest risk category, and it would be a waste to test you.”
But I continued to push for an HIV test. I knew you could put yourself in a compromising situation when you’re out there in the streets abusing yourself by having unprotected sex for drugs or to live. They finally tested me for HIV. The test came back positive.
I wasn’t concerned with HIV/AIDS prior to getting sick and being diagnosed. It was not on my radar. It should have been, but back then the virus was still considered a white gay male disease. And worrying about HIV couldn’t contend with thinking about how am I going to get high, how am I going to eat? My life at the time was very mixed up in the drug game, and I did whatever I had to do to maintain that particular lifestyle.
Once they told me I was HIV positive, honestly, my gut reaction was that God had needed to do something to slow me down because I was really killing myself on the streets. And then I was mortified. I started going to see doctors
because the drug treatment facility I was in was affiliated with Memorial Sloan-Kettering, which had a satellite HIV/AIDS treatment facility. But I didn’t start taking HIV treatment because I was afraid. I participated in a clinical trial, but I stopped when I began to see people that I loved and cared for in this study die. So I kept myself from being treated.
I was still going to the doctor every three months, though, to be evaluated. I had been doing well since my diagnosis, but then I suddenly took a nosedive. At one visit to the doctor, my viral load was over 387,000 copies. There was no getting around treatment at this point. I thought, do you want to die, or do you want to take the chance to save your life and be able to thrive again? In 1992 or ’93, after a cancer diagnosis that almost took my life, I decided it was time to stop being afraid and start treatment.
Now, I happen to be thriving with HIV. It doesn’t define me. I have made sure that it doesn’t order my day. I’m not saying that people who are ill should ignore HIV, should just concentrate on other things. But if you’re doing a good job of managing your illness, and you’re informed about what it is you need to do, then you should not allow HIV to order your day. Let it work with you instead of you working with it. And it can be done.
I think the media have done us some injustice by—dare I say it?—normalizing HIV, making it as common, as everyday, as diabetes. Or you know, “It’s manageable now.” How is it manageable when it’s still killing our people?
I think we need public service announcements in every form, everywhere—on billboards, television, radio. We need grassroots organizations in every neighborhood targeting not just our youth, but everyone. Breaking it down, approaching each ethnic group specifically and also by socio-economic status. That’s what we need to do.
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