Observations

In a dark mood, I went to bed early. Figured I’d sleep it off or at least get some sleep before my double header of hematology and rheumatology tomorrow. I didn’t realize my phone ringer was off, I’ve been leaving it on in case of hospital calls, but I must have turned it off for the Rise and Resist meeting. At five past midnight, I woke up suddenly for no particular reason. The cats were all snoozing quietly in their spots, the heater was humming along softly, making a hopeless effort to keep up with the night’s bitter cold. It felt like I had been awakened by an invisible disturbance in the energy. Confused, I reached for my phone and saw a missed call from my Very Sick client. I called him back and found him distressed. “I want to go home, I’m tired,” he said, with no understanding that his life literally depends on the heart and blood pressure medications flowing into his veins. I tried to explain, “your heart needs the medicine.” “They already gave it to me,” he said,...

Today was a march, but I needed to spend the day tracking down and sealing off drafts because the temperatures are supposed to drop into the teens tonight and stay very low most of the week. Before I started on that, I had to set everything up for a cold weather overnight at work – assign staff, notify the church, get the word out to clients. When the weather is below 20, one of our staff members opens the space at 8pm so that clients with nowhere to go don’t freeze to death on the street. It’s nothing fancy, sleeping bags on the floor, but it’s warm and safe and even our clients who will not stay anyplace else trust us enough to come inside for the night. I was just finishing up the overnight preparations when the Very Sick client’s uncle called. “We’ve decided to have them try extubating him,” he said, “and maybe lower the heart medicine.” I’m glad this is the direction they have chosen, but then he says, “we’re worried that his father might try to block this. If that happens, ...

It’s an overcast medium-cold drippy day. Everything - the sky, the slightly choppy water in the Narrows, the Verrazano disappearing into the fog - is so persistently grey you wouldn’t know if I had taken a picture in black and white or color. This kind of weather makes me feel like one of those storybook princesses who pricks her finger and falls asleep for months. I work today, so I shove aside the boulder of inertia and start getting ready. Jeff B, the volunteer who works with our Very Sick client calls. He says the client’s father has asked him for a ride to the hospital. He’s a little confused about why the father is asking for a ride from Harlem instead of taking the train. “Maybe this is his way of asking for support,” I say, and this rings true for Jeff. “I told him I could get him after church,” he says. “And he said to me ‘you’re a man of God, we can pray over my son together.” Jeff is nervous about this, because he is a liberal Christian and he doesn’t know ...

This has been a rough week, loss all around, on every level, while the underlying energy churns, unsettled and vulnerable people are thrown off kilter. Some clients feel like balloons trying to drift off away from the Earth, and the only thing holding them here is as fragile and tenuous as a string wrapped around my wrist. I try to plant my feet, feel my roots extending into the earth, make sure that too many souls tugging skyward don't lift me off the ground. I think of a phrase my dad used when dementia was stealing his words, "down to the nothing," - for him it meant naked, as in the doctor having him undress "down to the nothing." For me though, it describes the stripping away of my inner layers, like the loss of a planet's gaseous envelope, its life-sustaining atmosphere, leaving a rocky barren world exposed to harsh interstellar radiation. I'm grateful today is Saturday and I could spend the day in bed in a pile of cats, bathing in their soft,...

The meeting was almost an hour late starting. The senior doctor started out by explaining the situation carefully, making sure everyone assembled understood each part - the kidney failure, the weak heart, the low blood pressure, the need for assistance breathing. His uncle took the lead for the family, which seemed like a familiar role. He asked the questions, and then the aunt chimed in with a few. His mother stayed silent. I could hear in the questions that they were searching for hope, a situation in which he would recover. "In your experience, what happens to patients in this situation?" "I don't have a crystal ball, but individuals in his situation die," he said bluntly. "His heart was already weak, and now it requires this strong medicine. The only cure would be a transplant but because he wasn't consistent with taking his medicine and going to dialysis, that's not an option. He could stay like this in limbo, until another complicati...

This morning when I picked up the phone, the NYU social worker said carefully, "he's really not doing well." "I'm glad you called," I said. "I couldn't reach anyone yesterday, but I wanted to talk about whether it's time to withdraw life support." I had been struggling with the idea all day yesterday, even discussed it with Rev Micah. "We have a meeting set up tomorrow to discuss that with his mother, aunt and uncle from Connecticut and we're hoping you can join." I agree, though I am worried his family might not be ready to let go. They haven't been in the trenches with him, day in and day out, the way we have. They haven't heard him screaming in pain through the phone, or sobbing about how tired he is, or listened to the chaos when he tried to hang himself in the hospital. Cage, the volunteer who runs our HIV group, went to visit. He found him awake, they must have lowered the sedation, and said he seemed to ...

Walking into his office, my doctor looked at me and said, “I almost asked how you are, but after last week, I know.” In a way, he’s struggling more than I am with the murder of Renee Good. Everyone has a point at which they realize, on a visceral level, that it could be them. I’ve known that for a long time, but for Dr. P, who had felt safe in the bubble of his privilege, seeing a white suburban LGBT person killed was the moment. “I saw the stickers on her car,” he said, “and I know that kind of suburban lesbian mom.” I tell him about the march, and he says, “I think I really understand civil war now.” He explains that now he knows what it’s like to have a position on something that is so fundamental to who you are that there is no flexibility, no possibility for compromise. He asks what’s going on at work, and I tell him about my client, the ICU, the intubation, that I am thinking of making him DNR. He’s seen this plenty of times and he agrees with me, that resus...

Sunday was an early morning. The protest had been planned a week before, we thought we’d get maybe two thousand people and then all hell broke loose during the week. ICE shot Renee Good, a lesbian mom of 3, in her car after she told them, “I don’t hate you,” and then prevented a nearby doctor from approaching her to try to help. That, combined with our insane “leader” declaring that we will run Venezuela for “years,” when he can’t even run this country, and threatening to take Greenland by force, and ICE committing assorted violence and rights violations against random people all over the place, got a lot of people into the streets. As we approached Sunday, it was clear way more people were going to be at the March, and a new route was needed. Jamie assigned me and Nadhine to handle the back before the route was even settled. So Sunday I knew I was going to need my hands free, so I went to the office first and dropped off my computer and bag. Then I headed back into the s...

I was standing in the laundromat when the NYU ICU called. “His heart is doing better,” said the PA, “we have lowered the dobutamine a lot. But his white blood cell count is still high, and his blood cultures are still positive, so we want your consent to do a bronchoscopy, do you know what that is?” “Yes,” I said, remembering the early 90s and friends coughing and gasping for breath, “they were done a lot when people were being diagnosed with AIDS by getting PCP.” “Yes,” said the PA sounding relieved that I didn’t need an explanation, “we want to one to see if he has a third kind of infection in his lungs.” “I assume he’s still sedated,” I say – bronchoscopy is very uncomfortable If someone is awake – “yes,” she assures me, “and we can give more medication if necessary.” “OK,” I say, “go ahead.” I was still at the laundromat, but had moved on to the dryer, when his mother texted me. “Just wanted to know if you saw him today and how is he doing?” “I’m in Brooklyn today,” ...

The first message of the day was from R., a client who lives with HIV, Crohn’s disease, and addiction. “I want to make a will,” he said. I reached out to a friend at Legal Aid’s HIV Unit, who told me they can refer people to a private law firm for wills, so I sent R. to him. I had to get an early start to see my psychiatrist before work. Just as I reached her building, the NYU ICU called and I started to panic, but they were just asking me for permission to share info with his father. The client himself is the same. They decided against trying to extubate him today. My psychiatrist is interesting. She’s fairly young, in her second year of residency, and dresses kind of professional/goth, often in black with chunky black shoes. Today her black dress was printed with some kind of creature, but I couldn’t figure it out. “Sting rays?” I asked. “Butterflies,” she said. “I just gave myself a mini Rorschach,” I said and we both laughed. In grad school we spent two s...

I was doing some banking for a client when a man leaning unsteadily on a cane with a half dozen hospital bracelets flopping loosely on his thin wrist came in. He got within two feet of the tellers and shouted “I need money!” The staff clearly knew him and a banker got up from her desk, came over and asked him how much he wanted. “$500!” he shouted and a teller started assisting him. “I need more money!” he shouted. “this is a bank!” “I told you to bring me your address,” the teller said calmly. “The Travel Inn,” he said. I know that’s a shelter, but the bank staff didn’t, it’s not the world they inhabit, and there was some confusion. The staff treated him respectfully, but the security guard was hovering way too close. While I was at the bank, I missed a call from the ICU. I called them back as soon as I got to the office. “He was being intermittently non-compliant on the floor,” said the ICU doc of my Very Sick client, “then his blood pressure dropped and his me...

Hanging out with a few cats on my day off, I pick up the phone. “I need a passport,” my Very Anxious client blurts out. “I’m thinking about leaving the country. Trans people are being put on a watch list. FBI agents are showing up at trans activists’ doors.” “I know a lot of trans activists and I haven’t heard that,” I told him. “But I’m sure they’re putting lots of people on lists.” “You’re on a list for sure,” he says, referring to my activism. “I have been for a long time,” I tell him, thinking of how during the most active days of Fed Up Queers we were told by a sympathetic insider that our names were on the wall at the Manhattan DA’s office. “I could go to Mexico with my aunt,” he says. “Not all of Mexico is gay friendly,” I tell him. I had a gay migrant client from Mexico who had been gay bashed and then refused treatment because of his HIV status. “I would want to be in Mexico City,” he says. “I really want to go to the Netherlands - Rotterdam not Amsterdam....

I woke up today with a sadness hangover, brain full of fog, and forced my reluctant body through the motions of a morning while impatient cats swirled around my ankles. Yesterday’s double dose of grief – the loss of Mark on what would have been my mother’s 83rd birthday – and the horror of the attack on Venezuela are weighing me down. I made my way to the office, but instead of working my way through the endless to-do list on my desk, memories of Mark – so many actions, meetings, long bus rides, memorials – were playing like movies in my mind. Mo, our senior security staff who is a father figure to many of the clients, showed up early and came into the office looking for a blank timesheet. He has worked for me for a long time and he could tell I wasn’t fully there. He sat down, and I told him about Mark. “I had a friend,” he said “back in the day. He got AIDS. I went to see him and I was shocked because his face was shrunken like a skeleton. He said ‘are you afraid...

The thing about a Trump presidency is that you never know what you will wake up to. Today we woke to the news that in violation of international law, the US military kidnapped Venezuelan President Maduro and his wife. As if that wasn’t crazy enough, Trump then gave a speech stating that the US will be “running” Venezuela, a problematic proposition on many levels but especially considering the mess he has made of running the US. Despite the pretense that this is about drugs, it is clearly about oil. As soon as I woke up and heard the news, I thought “No blood for oil,” an echo of long ago activism from the gulf war. It was 1990, I was in high school, and a bunch of students from various public and private schools around NYC had created an organization called Students Against War. Perching in the tiny plastic chairs in the nursery school of the Washington Square Church, we planned marches, and student walk outs, and anti ROTC actions. After the war, SAW became STAND and b...

T., one of our trans alums, stopped by today. She was on a mission. “Today makes two years since we lost Sasha,” she said, “and I want to make a video.” She gingerly lifted the frame with Sasha’s photo in it off the wall and held it in her lap. I handed her the office phone to record it on since she doesn’t have a phone. With the camera running, she poured out her sadness and loss and anger at the unfairness of Sasha being gone so young. She was sobbing by the end and, dabbing her eyes, she asked me for a picture of Sasha to take home. I pulled up Sasha’s facebook on my phone, and handed it to her to choose one, then printed the one she picked out. Sasha loved the camera and loved to perform, so there were plenty to choose from. Once she left I thought about the years I knew Sasha, and how I struggled to help her contain her outsize personality and extreme impulsivity enough that she could keep attending the program. I thought about the many times I had to come to the re...

Today, while my friends were welcoming the new mayor and the potential of hope’s return in the subfreezing air, I spent the day de-peopling. Instead of bundling up and heading into the city, I spent the day in my nightgown, soaking in the languid purring warmth of my pile of sleeping cats. Without the constant reaching need of human voices, I can open my rusty gates and let the tranquiilty of feline dreams flow in and fill the deep canyons and spidery cracks like the golden kintsukuroi seams in Japanese porcelain. Like the map of a teenage cutter’s scars faded to silver on middle aged skin, the repair is solid but the mark of the pain still remains.

For years I have told my vet that when a cat gets sick, I do too. He tell me there’s no scientific evidence of a shared cat/human pathogen, each species has their own version of things, their FIV to our HIV etc. But with the perspective of 50 years of veterinary practice, he tells me “there’s a lot we don’t know yet.” Poor Sapphire is sick, all sniffly with her eyes watering and I have a sinus headache, had my New Year’s call w Lucy in a raspy voice, and coughed myself awake at 3am. Earlier in the day while my radical lesbian doc inspected my ankle and decided against another injection right now, thank goodness, I told her about the never ending cough, followed by the nasty stomach virus and now this. “I thought the immunoglobulins were supposed to protect me from stuff,” I said. “They are,” she said and we fell silent for a moment, considering that. “But I haven’t had shingles or thrush”- I used to get both repeatedly. “That’s something,” she says, carefully ...