On March 5, 1995, the day I turned 30, I admitted my then-partner Shane Sawick into the hospital. He would not come out alive, dying just two weeks later, on March 22. Although AIDS was the war he battled, he was ultimately done in by a skirmish with progressive multifocal leukoencephalopathy (PML), a rare but usually fatal disease that quickly took away his ability to speak, move or even blink at will, though his brain continued to think, process and feel. It was devastating to watch a loved one undergo such a debilitating experience, and yet that act, of being both lover and caregiver, thoroughly transformed me as a human being. Indeed, I would not be the husband, father, writer or person that I am were it not for that period of crisis during which my partner and friends died. As we observe World AIDS Day, I find it perplexing that few seem willing to embrace or even mention the epidemic that so greatly affected and altered the LGBT community. What is it about that era that frightens us so?
The easy answer might be that disease and death make people uncomfortable, which is understandable, to some degree. Prior to Shane's death, my best friend of eight years and I were inseparable. (I'll call him Pete.) At the time, I couldn't have imagined a better friend. Pete made me laugh, kept me company and ushered me through my West Hollywood "coming out." Once Shane got sick, however, Pete disappeared. He never called or came to visit us in the hospital, despite knowing that I was there 24/7. Whenever queried by friends regarding his absence, Pete would say, "Oh, you know, me and hospitals. I just don't like the idea of sickness."
It wasn't until the day of Shane's memorial that I next saw Pete. He came up to me, noting, "Great service!" before the next words came out of his mouth: "Wanna hit Happy Hour later?" Needless to say, I chose to end that friendship, as well as others in which people could not grasp the emotional magnitude of what had happened to me and others like me. The depth of my experiences caused a change within me, which required a new support system willing and able to tackle the "hard stuff," no matter how unpleasant.
For some, the era of losing friends and loved ones has been difficult to revisit, because of the emotional toll taken. Many have gone to great lengths to separate themselves from the pain, moving from the hardest-hit urban centers to smaller, more rural towns. Others have gone into emotional hiding, losing themselves in drug or drink, or in simply shutting down, so as not to feel the ache of such loss. And some have, by necessity, focused on rebuilding their broken circle of friends.
New causes, such as marriage equality, have replaced AIDS as our community's priority, and it is hard to argue that rallying for wedding cake isn't more fun that protesting for HIV drugs. Still, we should not have to choose between the two.
These days, activism for many means little more than clicking "like" on a Facebook post. While thousands stepped into the streets in the aftermath of Prop 8, we've not seen anything on that scale for HIV/AIDS in years. At what point did we become complacent? Is having a drug that makes the disease "manageable" really all we want? What happened to a cure, or a vaccine?
Today, people still die from AIDS. While drug advancements have substantially decreased that number, it has also created the false belief that contracting the disease is essentially meaningless. To some, taking one pill a day is an easy tradeoff to having to wear condoms.
Most disturbing, however, is the sheer number of people to whom AIDS just doesn't matter, relegated to a page in history. When I mention having lost a partner or friends, I'm most often met with a blank stare or a cursory nod, with no real emotional acknowledgement of what that time meant and continues to mean.
During the AIDS crisis the LGBT community rose to the occasion, stepping in to take care of our own when the government, pharmaceutical companies and other organizations couldn't -- or wouldn't. LGBT people exhibited incredible bravery, tackling huge monoliths with acts of daring creativity and passion. Were it not for our take-no-prisoners approach, we would not have the HIV drugs we have today.
The crisis temporarily brought together both genders, as women stepped into vacant leadership roles and helped those stricken by acting as caregivers. Today the gender divide has returned, with little reciprocity from gay men on the causes dear to lesbians, such as breast cancer or cervical cancer. In many ways we've gone back to being strangers, with a debt left unpaid.
Other communities devastated by tragedy have managed to turn such markers into rallying cries, and the LGBT community must find a way to do the same with AIDS. Just as the Jewish people have dealt with the memory of the Holocaust and the African-American community has processed its history of slavery and the civil rights struggle, so, too, must our community find a way to embrace the AIDS era, fully honoring both those we lost and what we gained.
For we did gain much. We learned that far from being the weak and passive individuals many of us had been stereotyped as, we actually had strength, passion and guts, and we fully demonstrated that to the world. We took on the powers that be and created real, tangible change. We literally bloodied ourselves for the cause, and yet today, speaking of AIDS feels almost taboo.
Does that have anything to do with the disease being sexually transmitted? Having worked so hard to combat the myth that being gay is to be "sick," did the emergence of a sexually transmitted disease take us back to a place of shame? Does that shame still linger?
To be clear, I am not remotely nostalgic for the days of the AIDS crisis. I lost too many, and it hurt too much. But at the same time I'm thankful that I was able to play a part in helping educate others about HIV, through my work at AIDS Project Los Angeles. I'm grateful to my dear friends who allowed me to be with them during their final days. I'm profoundly changed, for the better, for having ushered my partner Shane to his death. And I'm forever in awe of the efforts our community took to respond to the crisis in unimaginably creative and lasting ways.
I just wish others cared as well.
Kergan Edwards-Stout's debut novel, Songs for the New Depression, was loosely inspired by his partner, Shane Sawick, and his experiences during the AIDS crisis. It won the 2012 Next Generation Indie Book Award in the LGBTQ category and was shortlisted for the Independent Literary Awards in the same category.