Every year on June 5, we remember those who died, and we celebrate those who are still living with HIV/AIDS. We call ourselves Long-Term Survivors. It is hard to translate this feeling in real time, with so much else going on in the world. To many, it feels like HIV/AIDS is over, but we know otherwise. We know that people are still getting HIV, and many are showing up in clinics and hospitals all across the world with full blown AIDS. We know it's not over, whether the world has moved on or moved over us, we are still here, and we are here for the duration.
This year, we lost many friends and loved ones. Some died of this disease, many died of complications or cofactors, many others were tired and gave up. Death for them, by their own hand, was a relief from real pain. This is a pain we cannot measure, I see people try all the time to understand and quantify it, and I say to them it is immeasurable and unknowable. It comes from years of stigma, struggle, rejection, lack of community, hopelessness, loneliness and defeat. These were Long Term Survivors. I remember them, because part of them is within me.
I am older now. I represent MSM over 50. I am white. I work, but the jobs I hold do not make ends meet. In many months they do not even compensate past my disability payments. What I have learned to do is conquer my fear and my doubt. What I have learned to do is work hard anyway, put blinders on, and like the work horse of yesterday plow fields for a sack of oats. I will not let HIV be as a broken leg -- they shoot horses, not me. I will earn even if the sacks of oat fall short.
When I am online, and someone writes about longing for love -- clean love, drug and disease free love -- I am wondering what dystopian universe they inhabit. We are neither drug nor disease free, we have not been disease free in decades. Until that day, we will love anyway. We will love right to your door. We will pass over you, as you requested, but HIV/AIDS and the drug epidemic will not.
There was a day last year when I found myself in a field with an errant bull. He had wandered into the pasture of heifers and impregnated two of them. Now he was facing me, and to make matters worse I was carrying on my shoulder a fifty pound bag of feed. I felt death. I would be crushed as so many farmers before me who wandered into the wrong field at the worst time. You cannot run. You have to stand him down. I had met a farmer once who was pinned by a bull on an electric wire fence. He created a circuit with his body and blast that bull right off him, but he was maimed for life. I thought about him then, and I am thinking about him now.
We are Long-Term Survivors, showing others how to survive. We are the lucky ones, and when we think we are the unlucky ones we should remember this day in 1981. The unlucky ones died. We are ourselves to know, to know well, to love and find it in others. And in that love, and our communities, we find the strength, the willingness, the power to move on. Maybe the greatest thing we can do in this world is love one another. It trumps everything. It destroys oppression and fear. Together we can defeat HIV/AIDS, or at least the loneliness and the self-doubt, the peripheral views -- the waves of isolation and dread. Alone, we have nothing -- this I learned after twenty-one years of surviving HIV/AIDS.
I dropped that bag of feed. It landed at my feet. But I did not take my eyes off that bull. Do not regret that you loved, and your love brought you here. If you are angry, I urge you to fight. If you are sad, I urge you to take the hands of your brothers and sisters and walk a while -- until you can dance for a cure, or ride those bikes, or stand in a protest line with ACT UP. Go forward, not back, and do not dwell in any town called pity. If the feed bag crushes your foot, do not take your eyes off that bull.v
I looked at the bull and he at me. I moved toward him, as I had once a big black bear in the wilderness. He looked to his left, and I kept coming. I walked right past him, and then, walking backwards, facing him still, I kept going -- knowing all the while where I had been, what I had seen, and what I had just survived -- until I reached the gate. When I close my eyes I still see his ring, hear his breath, smell his hide -- and I can still feel that fear of the unknown running up my spine. The mud, it held the prints of my boots.
Every day you face the bull -- some days it's cow's milk and on others it's rainwater. Know the difference, do not dwell, and press on with the courage you've earned -- a life in full will not reveal itself so handily. And the journey out of any meadow contains both the memory of wild roses and the horns of your demons. Be proud of what you have overcome, look forward to that next step, safe passage from an epidemic requires a kind of courage you do not always know you possess until you pick up that sack and run. Take my hand now, and when I can't keep up with you -- press on without me. We are survivors -- generations long -- and when the reins slip from my grip it will be easier if you are there to catch them.
This post first appeared in the ACT UP NY Facebook group.