Live and Let Live

My goodness, it is another World AIDS Day. This is among my least favorite days of the year.

Don’t misunderstand: I do not minimize the need for this day. It is vital to remind the world of the human cost of HIV and AIDS. We must remember those we have lost. We must thank the care providers and researchers who give so much time and effort to help those who have the disease. We must rededicate ourselves to this crucial effort. And as difficult as my experiences have been in reporting on the disease; in volunteering as a helper and “buddy”; in raising my voice as an activist; even in sitting at deathbeds, holding friends’ hands and easing their way from this life to the next, I recognize the blessings and growth bestowed on me from having lived through them. Indeed, I am grateful for these experiences, for the many wonderful people whose life paths have intersected mine — and for the global effort to honor them.

Still, I suspect I have been at this AIDS business for far too long. My first awareness of the disease came 20 years ago, and in the intervening two decades, I have suffered a lot of loss. As of Nov. 30, I have lost 121 acquaintances, friends, and loved ones to AIDS. Thinking of the happy memories I shared with these people — which I do often — gives me great joy. But on each World AIDS Day, I think of these people en masse, in a rolling line: Willie and Robbie and John and Leon and Steve and Connie and Carey and Vince and Audra and Andre and Bobby and Paul and Lorraine and Jamal and Rochelle and Joe and Colin and Walter and Mary Sue and on and on … As you can imagine, it can be mind-numbing, and each year the process becomes increasingly brutal.

My beloved grandfather, who died from cancer three years ago, once said to me during a time when a lot of his 70- and 80-year-old friends were dying that I had undergone too much loss for someone so young. I was just over 30 then and agreed. Now, I am 42 and more fatalistic: Death is part of life. Whatever your age, you deal with it and go on. I can do that. But it doesn’t make the grief disappear, though, and the pain intensifies as the years roll by.

Five years ago, I was stunned and saddened by the death of a friend and AIDS activist. My pain was such that I had to write about it. The story appeared in Baltimore City Paper in May, 1998. My pain is such today that I have to share a piece of it here:

Upon hearing that Steve had died, I also learned his funeral would be a political event, a showy media fest in front of the White House. This was poetic justice, in a sense. Steve had given his life to the fight against AIDS. He moved from Seattle to Washington, by way of stops across the nation, following candidate Bill Clinton and demanding that if the Arkansas governor won the presidency in 1992 he make finding a cure for AIDS a top priority. Clinton promised Steve — to his face — that in his first 100 days in office, he would launch a Manhattan Project-type effort to find a cure and guarantee comprehensive health care for all Americans. To make sure that the president-elect made good on his pledge, Steve moved to the nation’s capitol with his [partner] Wayne. And he made Clinton a promise of his own: “I will haunt you.”

So I suppose lying in state in front of the White House was a fulfillment of Steve’s vow. I know it was his final wish — when he entered the Washington Hospital Center for what would be the final time a month ago, he told Wayne he wanted a political funeral in front of Bill Clinton’s house. As someone who loved him, I had no choice but to respect his wish. Still, I was angry. Color me selfish, but my friend was gone. I wanted an opportunity to mourn in a manner that I thought he deserved–something solemn, dignified, respectful.

And I wondered about AIDS activism in general. For those of us who’ve worked in the trenches, from caring for dying loved ones or “buddies,” to shouting ourselves hoarse in the street or sitting in a jail cell, to taking on unfeeling government suits — all the while neglecting our own lives, families, relationships, and personal health — how much is enough? Steve gave up his life — apparently willingly. He fought incessantly, irritated and riled many, lost sight of his priorities time and again, and paid fuck-all attention to his own well-being. And now, by his own choice, he was giving up the only opportunity to have his friends and loved ones speak only of their love for him. What more is necessary to create visibility for the war against this disease that has murdered thousands and held activists’ and caregivers’ lives hostage for nearly two decades? Does some well-meaning fool have to hang himself in the village square using a long red ribbon as a noose?

Yes, I have dealt with much loss. It haunts me today and likely will do so until my dying day. But I must think of my lost loved ones and about their deaths.

On World AIDS Day, there is no choice. The situation is worsening, according to United Nations Secretary-General Kofi Annan, who warns that the world is losing the fight against the disease. Read his 2003 World AIDS Day message here.

As noted by England’s National AIDS Trust, five people die from the disease every minute. The disease once known (erroneously) as the “gay plague” now affects every part of this planet, infecting more than 42 million people, 5 million of them last year alone. More stats from NAT’s World AIDS Day site:

Worldwide, and in 2002 alone, AIDS claimed 3 million people last year. That’s over 8,000 people every day. But the story does not end there: just under 14,000 new cases of HIV infections occur every single day.

95% of all AIDS cases occur in the world’s poorest countries. In several southern African countries, at least one in five adults is HIV positive. In 2000, the HIV prevalence rate among pregnant women in South Africa rose to its highest level ever: 24.5% bringing to 4.7 million the estimated total number of South Africans living with the virus.

That’s a terrifying thought. And it’s the reality that millions of people in developing countries are living with HIV and AIDS as you read this: communities devastated, teachers and doctors dying every day, people’s futures shattered, because they can’t afford the drug treatments that are helping people living with HIV and AIDS in richer countries like [Britain and the US].

Adding insult to proverbial injury, there are those who, through ignorance and/or bigotry, still attempt to stigmatize those with the disease Hence this year’s WAD theme: “Stigma and Discrimination — Live and Let Live.” NAT offers a test that asks Are You HIV Prejudiced? Take the test and learn something about yourself. However you score, make it part of your life to stop this nonsense. Help people learn to live and let live.

So there are many reasons that make World AIDS Day necessary. UK organization Avert offers a summation:

In order for HIV to be effectively tackled on an international level, efforts need to be made to

Started in 1988, World AIDS Day is not just about raising money, but also about raising awareness [and] education and fighting prejudice. World AIDS Day is also important in reminding people that HIV has not gone away, and that there are many things still to be done.

Indeed. I have been at this AIDS business too long. But as long as prejudice continues and education is needed and items sit on the to-do list, I will stick with it. Quoting Frost, there are miles to go before I sleep.

Much love always to everyone on my list… You are missed, every World AIDS Day and, in truth, every single day.

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