From Let the Record Show, a history of ACT UP New York, which was published last month by Farrar, Straus and Giroux.
It’s March 2018. I have been struggling with a serious genetic disease, caused by a Janus kinase 2 gene mutation, for a decade, and my veins have become scarred after two years of phlebotomies, given every five weeks. The nurse who has been patiently sitting with me and helping me, Trish Sullivan, used to be an AIDS nurse at NYU Langone, known at the time as NYU Medical Center, in the early days of the epidemic. She told me about the endless diarrhea that nurses had to deal with, how they would try to clean up patients when their friends or parents came to visit. The men couldn’t keep any food down except milkshakes from McDonald’s, so the nurses would pick up shakes on the way to work. It is very intimate to sit with Trish during the twenty-minute blood drain, and we talk about Trump, her son’s football team, and AIDS memories. Then one day, at the end of the session, she says, “I won’t be here next time, because I took a job in another building. I’m going from five days to four days. But I didn’t want you to come in and have me just be gone. It wouldn’t be nice.” I am so moved by her kindness. This is how human beings should behave: acknowledging, communicating, informatively kind.
A doctor at Memorial Sloan Kettering thinks I may have a second gene mutation and takes a bone-marrow specimen. The full testing process takes two months. And in the end, it shows that I don’t have the mutation, which is “good,” except I still don’t have an explanation for what is happening to me. But the Sloan doctor, a personable but nerdy young Jewish guy with a trimmed, graying beard, tells me that the percentage of red cells in my blood, forty-five, for which I have been aiming for two years, is actually the standard for men, and that, as a woman, I should be at forty-two. Of course, I am familiar with this problem of male standards from AIDS. And I understand that I have been misanalyzed, part of a historically consistent erasure.
The next time I come to NYU, it is with the knowledge that I have to get to forty-two, not forty-five. It’s a bit daunting. Normally, I come in between forty-six and forty-eight, so getting down to forty-five with one blood draw has been relatively easy. But forty-two is a whole other matter. There is a new nurse, and she seems to be in a rush. Because my blood is too thick, the phlebotomy requires a large needle, and she goes into my vein but no blood comes out. She is impatient and starts digging around in my arm, trying to score the vein. For the first time in this horrible process of my mysterious decline and untreatable series of symptoms, I feel overwhelmed. She pulls out the needle and approaches another vein, and that one doesn’t work either. She is digging around again, and I am panicked.
The sensation of a carelessly operated needle digging into my arm, in a futile search for a functional spot in a scarred vein, is a kind of invasion I have not experienced before. She takes the needle out and my arm starts bleeding. She wraps it up and goes to my left arm. There, again, she makes two punctures and gets nowhere. My veins are scarred from so many punctures, and she can’t access the blood. She goes to get two nurses from chemotherapy, who start rubbing my arms. Then another nurse, sixtysomething, Irish, like Trish, comes in. She tries my right arm again, and it still doesn’t work. I want it to end.
We decide that I will go home and let my veins heal. Then I will come back in ten days and try again.
The older nurse waits until the team has left.
“I’m Kathy,” she says. “Ask for me.” So I make an appointment to see Kathy.
Around the same time, my eighty-eight-year-old mother contemplates a move to assisted living and needs me to go through her photographs and divide them into parcels for my siblings and cousins. I spend three days sorting pictures of family events that I was excluded from: baby showers, weddings. I have spent forty years mourning the cruelty of my family, and performing this task makes me stoic about the whole thing. “This is the way it is,” I tell myself. “This is the way it is,” my friend Dudley says when his stepmother dies. “This is how it goes,” another queer friend says when his mother dies. But I am surrounded by straight people who find the decline of their parents to be tragic and unbearable. My friend Jack Waters, a long-term HIV survivor, tells me, “AIDS prepared us for everything.”
As my veins are healing, I decide to go to Jeffrey VanDyke. Jeff has been my acupuncturist for a number of years, and I have sent many people to him. A painter in his late sixties, he had a huge AIDS practice in the Eighties, when there were no treatments. While I am on the table, we have long conversations about AIDS. Sometimes it surfaces that we both knew the same person, long dead and forgotten. And that is always a special moment. It feels great to say someone’s name and to conjure up something about them, no matter how small. This time, Jeff is trying to help me get ready for the phlebotomy. The session is two hours, and we start talking about some of the dead people we have in common, only this time we are joking around, actually camping. “That one was such a bitch,” Jeff says. “Yeah, he thought he was so glam,” I respond. We are laughing, and devolve into full-on bitching, telling jokes about all the jerky things our dead people said and did. We are probably the only people in the world talking about them that day. Some have been dead for thirty years or more. It helps relieve the pressure, this intimate acknowledgment.
The next morning, I come into the cancer waiting room. Everyone there is nice. The woman who works reception is kind and patient. The chairs are comfortable. There is a quiet room. There is light coming through the windows. They have coffee. My colleague who also has cancer is there that day; we hug. I am feeling optimistic that this time the phlebotomy will work.
Kathy comes in. She is very kind and very experienced. She talks me through the process, using lidocaine to make the entry less difficult, which lets her move the needle around without hurting me. A necessary innovation. As the twenty-minute slow drip starts, we start talking, and I tell her that I am an AIDS historian. Kathy tells me that she started working in nursing at NYU in 1980. And then she describes the suffering. The young men, with good bodies, in their twenties, riddled with lesions known as Kaposi sarcoma. She had told her boyfriend, “I saw someone with KS,” and he said, “No, that’s impossible. You have to be old and Mediterranean.”
She had a patient who would yell at the nurses and throw his urine. His friends came in and said, “This is not him. He would never act this way.” Later they realized that the patient had dementia.
Time is up; the blood bag is filled. She takes it and throws my blood in the garbage, as it is bad and cannot be donated. She wipes a tear. We have not mentioned any names, but she is crying for all of them, and we two, end-of-middle-aged women, sitting in a hospital room, are part of the ashes.