AIDS etc

Between the shoulder surgeon and seeing clients, I didn't get to any of the various observances of World AIDS Day. I missed the march, the hours long reading of the names of the dead, the candlelight vigil. Online however, my feed was flooded with people's remembrances of loved ones lost. The vast majority were in the 80s and 1990s, before the availability of HAART (highly active antiretroviral therapy)in 1996. HAART literally resurrected people, including two close friends of mine, from their death beds. My three years as an undergrad were shadowed by this tidal wave of deaths that preoccupied me to the point where a Southern Writers professor, an older woman who still should have known better, flat out asked me if I had AIDS myself. Not only was this an inappropriate question, but in 1993 it was also unanswerable because the autoantibodies present in people with lupus rendered the early antibody tests useless for me. And then I graduated into a world of sudden, unimaginable hope - and also confusion, as people who never expected to work again, or to need their retirement funds, were faced with futures. Even as I read people's memories from those distant years, the awareness was hovering that on top of those memories, I have a layer of more recent ones, of clients who have died of AIDS in the 17 years since New Alt was founded. It wasn't until I was in bed, with my detested mask strapped to my face and the hose sprouting from the top of my head like a demented teletubby and Marley asleep under the blanket, that the ghosts started jumping down from their glass walled alcoves and crowding my mind. Dayday and Nigel, Candi, and Lynne and Jazzlyne. I remembered the day Lynne lay in the ICU, just a faint outline of her remaining, and I told the doctors that was enough. In the quiet without the machines, I could hear that she was dying, just a few hours from the edge, but they insisted that since she was no longer on life support, she could not stay in the ICU and had to move to the hospice floor. I followed the orderly who wheeled her barely breathing body into an elevator and stood beside feeling the descent as she took her last breath. When we emerged from the basement passages of the hospital into the beautiful, calming environment of the hospice floor and the hospice staff gathered around to prepare her body, I was outraged by what she never got to experience. It was a level of care and dignity that might have made her willing to commit to her treatment in a way that would have kept her alive. Tears were still pouring down my face when I fell asleep. I woke up in a strange mood worsened by pain. The shoulder surgeon moving my arm every which way had set off a cascade of pain that he apologized for. When he went to prescribe pain medication, I warned him that I take a lot of meds, but his eyes still widened as he skimmed the list. "What's IVIG?" he asked. "Donor antibodies" I explained, "its an infusion every month." "I'm getting a lot of drug interactions here," he said. That was not a surprise. The drug interaction checker already lit up yellow and red like the lights my neighbor has been stringing around her windows. Adding whatever he added would just have increased the cacophany of warnings. "Take Tylenol," he told me, completely useless advice. The cold rain combined with an unexpected retirement announcement from two colleagues at another organization who have been essential to our work did nothing to contradict my prediction of a crappy day. "Chickenshit," my Dad, who had hated cleaning the chicken house as a kid, would have called it. The subway station was empty except for a woman standing by the OMNY machines. As I searched for my wallet I heard her yell "Bring back the metro cards! OMNY is a load of horseshit!" She was still yelling obscenities to nobody when she reached the bottom of the stairs and boarded the train. "Bring back the tokens! Simple!" she shouted stomping down the car and through into the next one. The day went by in a blur of clients and paperwork, gay santa and emotional support animals and food pantry referrals all tossed in a blender. At 7pm, I logged in for the Rise and Resist mtg. Trying to control my nonstop yawning and take notes, action after action went by. Then we got to last weekend's blockade of a big ICE raid on Canal St. Person after person shared details from their various vantage points, and then it was Julie's turn. "I was nose to nose with the officers, like this far" her gesture was kind of hard to interpret on screen. "I talk to them, not the ICE agents, they are there for the sadism, but the others, DHS and FBI who didn't actually sign on for this. I made eye contact with one guy and I told him, 'you don't have to do this, you can quit and do something you can tell your children about.'" She described the things she had said to him, and I remembered things I had heard from my mother and others of her generation, about talking people out of complying with Vietnam draft orders. "He had tears in his eyes," she ended, reminding the group to look for the humanity in these people, and to split off local officers from ICE when we can. "I started getting roughed up, and I said 'this is NYC you (ICE) can't touch me, but she (NYPD) can, this is their turf.'"