Mark

Ben and I were sitting next to each other when an email came in on my old, rarely used yahoo account. It was from our activist friend, Mark Milano, who I have known for 35 years, summoning us to an "extremely important" zoom call, topic unspecified. I showed my phone to Ben, and he and I both had the same immediate reaction - whatever this was, it was not going to be good news. The call was scheduled for 4pm on sunday, wedged in between a Board meeting and our sunday dinner program, but when Mark facebooked me early on sunday to confirm I would be there, I told him I planned to step away from work to do it. I think it was 1999 when we decided to target the US Trade Representative about US policies preventing countries like South Africa from producing their own affordable HIV medications. We went to DC and I dressed in my most femme, non-activist outfit and signed in to use the library on the ground floor of this federal building. I went to the bathroom and pulled a ton of folders and papers out of my bag, walked towards the security desk, and pretended to trip on the carpet, using a theater class trick of hooking one foot behind your other ankle. As I fell, all the papers went flying everywhere, and unintentionally, so did my glasses. While security was bent over helping me up and picking up the papers, nine activists ran in the front door and up the stairs and took over the US Trade Rep's office. At the same time, ACT UP Philly, always a scrappier, lower budget org, put a ladder on the outside of the building and got on the balcony for a banner drop. I later heard the ladder was too short and they had to jump onto the balcony. I was originally going to join everyone upstairs, but when I saw the Federal Protective Service rushing in with their helmets, and heard the security guard telling them "she called herself falling!" I decided to disappear. I don't know how it didn't occur to us that this might involve a more serious legal situation, but when I reappeared at the courthouse to do support, it quickly became clear that things were not headed in a good direction. I started scanning the room with my gaydar, picking out attorneys to approach for info and help. As it got later and it became clear people were not being released that evening, we called New York and asked for more people to come help with support. Eventually, everyone was released the next day and we all gathered in a sort of hippie restaurant. I could see some of the guys were irritated with Mark and they told me that he, a white man, had sung we shall overcome in the DC jail packed with black men. Since we had called more people to come, we didn't have enough car space going back to NYC so I, having inherited a love of trains, offered to take Amtrak. I could see that the guys needed a break from Mark, so I invited him to take the train back with me and off we went. We settled into our seats on the train, and I thought Mark might rest after his night in jail. Instead he talked, with his ability to project - so useful for things like the singing he loved and things like interrupting Al Gore - ensured that everyone in our car could hear him. What he decided to talk to me, a young queer woman, about, just a few years past the peak of AIDS deaths, was bare backing while HIV+. I did a lot of talking about sex those days, teaching people how to reduce their risk, but this was not the time or the place for that conversation. Years later, word went out among the activist community that Mark, who had been diagnosed with AIDS in the 80s, was now facing anal cancer and needed an experimental treatment to save his life. His insurance company, conveniently loated in midtown, had denied the treatment. We quickly printed up matching shirts that said something like "dying for health care" and about 13 of us stormed into the ground floor lobby of the health insurance company, blocking the revolving doors and the turnstiles that led further into the building. We were hauled away by the police, but we created enough bad press for the insurance company that the treatment was speedily approved. Later on in court, a young judge upheld our lawyer's rather shaky argument that we weren't trespassing because it was a public lobby. So Mark survived, again, well served by his combination of scientific education and research contacts and his willingness to go out on a limb. But now on the call, with his family and his activist friends listening with concern, he was taking us through his whole medical history in the same informative tone he used to teach thousands of workshops about understanding your lab results and making decisions about your HIV treatment. He started at the very beginning, describing how his history of abuse led him to the many sexual partners that were common in gay culture at the time. He described his AIDS diagnosis at a time when AIDS was almost universally fatal, as well as his sarcoidosis. He talked about the anal cancer diagnosis, and then the game of medical whack-a-mole they played as it popped up in different places, removing it from first one lung and then the other. How the cancer showed up in his kidney and nobody wanted to remove that until he reached out to Anthony Fauci, who found a doctor who would do it. Then he talked about how unbearable he found dialysis and his decision to udergo a transplant with his brother's kidney, even though some doctors warned that the immunosuppressive treatment required to protect a transplant would create an opportunity for his anal cancer to come back after 12 years. He explained how his oncologists and he were confident that the anal cancer was gone, but now, a year after the transplant, a spot had appeared on his liver. He took us through the process of assessing the spot, blow by blow, scans and then a failed biopsy. Then, as we all watched with intense concern mirrored on all the faces in the little boxes on the zoom screen, he told us about reading his PET scan report, which showed cancer all over his body. We didn't need the exact details, people were weeping in their little boxes, and I turned my camera away so nobody could see my whole face, but Mark went through it with his usual precision, a spot here, a spot there, the liver met tripling in a couple of weeks. He hasn't made his decision about how to proceed yet - if there is anything out there, he may well try it like he has so often before - but he made it clear that he wanted to shatter our image of him as a perennial survivor, and ask for our support in this last stage of his life. "If you need us to get arrested anywhere, just let me know," I typed in the chat, a joke I have shared with him at other tough points. Other people pledged their support and shared their love. Off screen, Ben texted me one word, "brutal." I had four minutes to dry my face and switch into work mode before we opened the front doors to the clients waiting for dinner, so I swallowed my feelings like the bitter herbs dipped in salty water at Passover, grabbed my computer, and bolted down the stairs, landing in my seat just as the first client came though the doors.