Observations

I was never one of those kids who beg to stay up later or fight going to sleep. Bed was my safe place, somewhere to retreat with my books and a cat or two. I definitely wasn’t staying up until midnight for New Year’s Eve. Instead, my mother would give me some colored paper to cut into little pieces and at midnight she would come wake me up and hand it to me to throw over the side of my loft bed. Then I would fall back asleep. My dad didn’t live with us, but he would often come to our house for special occasions- for a while he had his own room at our place until it started filling up with all the clean laundry that my mother meant to iron but never got around to. When I was eight, the three of us had New Year’s Eve dinner, which always included a boiled cabbage that my mother would stick a gold coin in. Whoever got the gold coin was supposed to be lucky for the year. This tradition might have been fine for a bigger family, but with only three of us it didn’t feel too luc...

At Mt Sinai West, some of the radiology rooms have these sections of beautiful, backlit tiles that hang above the machine. It’s some kind of flowering tree, maybe cherry blossoms, against a blue, blue sky. It seems like a lot of effort to go to for something you are only going to see briefly as you lie there on your back about to be slid into the machine. I know a lot of people get freaked out by scans, especially the claustrophobic MRI so maybe it’s a distraction or a moment of calm. Although the MRI reminds me of the coffins the Starship Enterprise jettisons into deep space when a crew member dies, it doesn’t actually bother me. At this point, I have had so many that sometimes I fall asleep in there. CT scans are faster, so they are not a good napping option despite being much quieter. While I’m in there staring at the beige plastic above me, I think about Kate, who was a frequent visitor to our campus health center. Having grown up without insurance, it never occurred to...

Sitting at my desk making my way through the tasks of a case management day – check on someone’s benefit application, send a referral for trans friendly shelter, send a request to an organization that donates shoes, I pause to grab the ringing phone. It’s a gentle sounding woman who tells me her name, and then when she says she’s from NYU Hospital, I immediately know what this is about. “You’re calling about J.,” I say. She tells me that our Very Sick Client is there in the ICU with a serious blood infection. I ask her if it’s coming from his port again. She tells me they’re not sure, that they are waiting for cultures to grow and that they’re going to do a CT to try to locate the source of the infection. She asks me a few questions, and I explain that he has an apartment in the Bronx but struggles to manage on his own there and that he doesn’t have home care because the home care agencies look at his extensive record, his outbursts and his non-compliance, and they won’t tak...

It was morning, never my best time,and I was trying to launch myself into the day’s to do list when I got a message from H. “rn I feel like unaliving myself,” she wrote, using the online slang people invented to get around restrictions on the word suicide. “I’m not kidding,” she writes next. “I am so overwhelmed.” My to-do list starts re-writing itself, priorities shifting. “I didn’t think you were,” I wrote back. I know where this is coming from. Her life, already challenging as a single parent with major disabilities and a special needs child, has recently gotten even more stressful. Since she doesn’t drive and public transit in their small town is extremely limited, she has to move so that she is within walking distance of the school when her child starts in the fall. The low income housing she lives in now is a development of freestanding little houses, and she will be moving to an apartment building. She’s worried about this because she has misophonia and cannot toler...

Pain is a thief of sleep. It’s 3:45am and the arthritis in my thumb hurts so much that I woke up because I can’t find a comfortable place to put my hand. I’ve had a couple of steroid injections into my thumb joint. They’re excruciatingly painful going in - and for the first day after- and you can’t have them too close together, but the effect wears off faster every time. I have had so many steroid shots so many places - various locations in the ankles and feet, knees, the hip. The hip is a particularly horrible procedure that involved inserting a very long needle into the space where your inner thigh joins your body to reach deep into the joint. Kate was waiting outside the room for that one, and she was able to watch the whole thing on a screen showing the mobile X-ray they use to guide the needle. I’ve also had many in various parts of my spine. I’m good with pain - if you do ballet for years you learn to cope, to breathe through it - but the six injections into my lo...

I never sleep through my two alarms, in fact I am usually awake before them, but this morning they had been going off for a whole hour before I woke up. It felt like swimming to the surface of a murky, weed-filled lake. Hazily I wondered if I had taken Ambien the night before and if so, how many, but the bottle was untouched. As soon as I surfaced, removing the blanket that was over my face and meeting the glare of four pairs of yellow eyes waiting for their food, I got hit by sadness like one of those sudden waves that bowls you over and leaves you gasping for breath. I realized I was crying without knowing why. It took me so long to get myself moving that I wound up too late for today’s doctor and had to reschedule. Sapphire has a cat cold and has been sneezing in bursts of tiny, mouse sized sneezes all night. She looks OK though- clear eyes and nose. She rejected the longer sweater I got her, wiggling her way out of it, so she’s back in the one that only comes to her- waist? Half...

I can’t take the southbound 9th ave. bus without winding up in conversation with an elderly gay man. I suppose this is because the bus passes through Hell’s Kitchen and Chelsea where men who survived the AIDS crisis are aging in place. This time I was sitting on the bus recovering from the cacophony of the clanking and banging of the MRI machine overlaid with classical music from the headphones they placed over my ears. Lying there in the machine I kept thinking it was like being at a concert with a jackhammer breaking up the sidewalk right outside. Suddenly a tiny, gnome-like old gay man next to me starts talking. “It’s a free country,” he says. I don’t know where this came from so I say “well, certainly not now. “ “That’s what they say,” he continues, “it’s a public place. What they mean is I can do anything I want.” I think about my activist friends, how often we tell cops and security cards and various other people that it’s a public place, we have a right to p...

S. is new, 22 and gay. He made his way from CA by bus, first to DC and then to NYC. When I do his intake, he tells me it was his dream to come to NYC and I think of all the people here who dream of going to CA. When queer youth arrive here, the bubble bursts pretty fast. Things are expensive, jobs are scarce, the shelters are frightening and the streets are bitterly cold at night. Some youth find their way to safety, a bed at a youth shelter, or at least a drop-in but for many it doesn’t work out that way. At 8am yesterday I woke up to a message from S., sobbing because the other youth at AFC were bullying him and not letting him sleep. For all the funding that flows to AFC, I feel like there should be someone on duty making sure things like this don’t happen. At Sylvia’s, the shelter I used to run, resources are scarce these days and the hot water is broken, but someone is watching all night, keeping people safe. When I call S back, he asks me about other youth...

It’s strange what makes you miss someone who was once as much a part of your life as your shoes or the tricky lock on the front door. I always miss Kate when signs and banners need to be made. I look up at the colorful mandala she drew hanging on my office wall, the perfectly spaced lettering spelling out a line from a Tom Paxton song, “My own life is all I can hope to control. I live my life for the good, good of my soul.” Although I can write with both hands and they each have different handwriting -which gave me some trouble when I went to vote and signed in with a signature that didn’t match the one on record- neither of them is neat enough for lettering a sign. But what’s making me miss her now is the flurry of gift wrapping, the blues and silver of Chanukah, the red and green of Christmas, rolls of the stuff taking up too much space in our office. I can’t wrap things at all, they wind up looking like a drunk kindergartener has had at them. Kate was always flabbergasted b...

I don't take the L train very often, but when I was at Stuyvesant, it was my daily commute for the first three years. F train to 14th, L to 1st ave. As the L got closer to the school, more and more students and teachers packed on, especially at certain times of day, and so the L became an extension of the school experience. Sometimes just to amuse ourselves, Mike and I would take the G instead of the F and get the L at Lorimer so that we approached the school from the opposite direction. Our parents would not have approved of that - in those days, the eastern part of brooklyn was still ungentrified, either purely industrial or gang territory. Today I stayed on the L, reading my book, as we passed Williamsburg, where many of our fundraisers are held at various venues, through less familiar Greenpoint until we reached the Jefferson station. Emerging, I found myself in a neighborhood mid-gentrification. Old, graffitied warehouses with missing windows were coexisting with ...

After not seeing her for months, V. shows up at the office. V. attended the same “competitive” high school I did, ten years later. Technically, neither of us graduated, but I was short just one physics regents and she dropped out much earlier. It had been years since then when we met, but I could sense her embarrassment so I never asked why. Today, she decided to tell me. She had wanted to take quantum mechanics her senior year, but needed to get further in math so that she would have the prerequisites in time. She decided to audit one of the advanced math classes to prove she could do it. She did all the work, even took the Regents, and at the end the teacher told her she would have had a 90, the highest grade in the class, if she had actually been in the class. Armed with this evidence, she went to see the head of the math dept., a man whose reputation I remembered from my time there, and made her proposal. He refused. And when a couple of years later he did let so...

Walking to the subway, l notice that the newish Georgian restaurant has a for rent sign. I feel bad because I have watched them set it up and I’m sure it represents a lot of hope. I think people in Bay Ridge would have liked the food but most of them are not even aware that Georgia is a country and the business owners didn’t help by labeling their owning in Georgian and then writing only the unfamiliar names of the dishes on their sidewalk menu out front. I think about Mrs Hickey, two doors down ,and how upset she was when the home attendants her children foisted on her after her husband died started cooking her food from their native countries instead of the bland Irish food she was used to. The same thing happened to my mother during chemo, when she was going into the hospital for three days a month and then coming out only to be assigned a different home attendant ,but my mother was delighted. She liked trying different food although she was not as adventurous as my dad who woul...

Last night ran late. The very sick client is struggling at the ER, which is not at his preferred hospital. He has diarrhea and he can’t stand and he says they took an hour to come clean him up. He takes this very personally and there’s no point in telling him it’s the system, the hospitals are so understaffed they can’t keep up with patients' needs. Someone finally shows up and we get off the phone and I start to get the crew ready for bed, pouring chow and water and dabbing Connor’s prednisolone on the inside of his ears. And then the phone rings again and I can hear that things have gotten chaotic. "They put this woman in my room, a one to one, and she says not to ask for anything and I told her I need the doctor because my chest hurts and she did nothing," he says agitatedly. I know something must have happened - they don’t just give people a one to one for no reason so I ask. "I tried to hang myself" he says, "At the ER?" I ask, surprised because n...

I’m supervising Connor’s breakfast when the phone rings. It’s J, my very sick client. I can barely hear him. “Help me,” he says, and I can hear that he is struggling to breathe. “Where are you?” I ask right away in case he loses consciousness. “At home,” he says “my arms and legs feel heavy.” I call 911, explain the situation. Sometimes there is a wait for an ambulance because NYC pays EMTs so little that they flock to jobs in the suburbs but it's not long before I hear them knocking through the phone. He can’t get up to open the door, so I call 911 again and give them his door code, thanking the universe that his door does not require a key. Once they’re in, I continue with my morning- human pills, fill the water bowl, put two cans of food my crew has rejected in my pocket to stick in the free pantry down the street. My mind is still in the Bronx though - I leave my phone sitting on the piano and don’t notice until I am already on the train. Thinking about the sound of...

Odie went home. He had been with me since March while his human, my Very Anxious Client made his way through the seriously broken shelter system. While the client was in the shelter, we put in his application for mental health housing, and crossed our fingers. They bounced it back- “not mentally ill enough.” What??? Trying to keep this client halfway functional was taking a monumental effort from our whole staff. Doug revised the psych eval, elaborating on symptoms and how they affect the client's life. I do the same with the psychosocial and we resubmit. Now the serious mental illness is approved, but they are rejecting him for his housing history. “Not enough documentation of street homelessness.” How the fuck do you document street homelessness? It’s not like the park bench gives you a lease, or you get a receipt every time you sleep on the subway. I tried to explain this to the mental health housing reviewer. "Just document one time you saw him for each of the stree...

Wednesdays are my day off but crisis happens when it happens, so I found myself on messenger with a long ago client, H., who was really upset because her new therapist had just diagnosed her with Bipolar Disorder with psychotic features. I was puzzled by this, since I have known her for twenty or so years and never seen her manic. “How many times has she seen you?” I asked. “Two,” she said. That’s the first problem- when I was in school we were taught that you can’t diagnose bipolar until you have known someone for a while and been able to observe their moods. But since payment is based on submitting a diagnosis, that gets tossed aside and people diagnose based on whatever information they can gather right away. While I try to calm H. by explaining that all these diagnoses are really just categories made up by a bunch of doctors sitting around a table, and are more of a communication shortcut than a scientific truth, I think about what could possibly have triggered this diagnosi...

I took Connor for a chemo check-up yesterday. I know by now that if I bring the carrier into the room where Connor is, he will disappear like the Cheshire cat but without even the smile left behind. Instead, I scoop him up from the pillow he has claimed and carry him to where the carrier is stored and pop him in fast, slam dunk style - back legs first so he doesn’t see it coming. As soon as he gets in the carrier, he starts making a sound beyond meowing – a cat yelling – and he keeps it up all the way to the vet. At the vet he takes one symbolic swipe at Doc, a gesture of resistance, which earns him a four-paw nail trim. I have been worried about keeping his weight up since he doesn’t want to eat much on the days after his chemo pill, so I have been getting up before dawn to give him a second dinner before we both go back to sleep. This is not very good for my “sleep hygiene” but it’s working, the scale shows that he has gained a little bit of weight. I tell Doc about the sniffl...

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, unimagi...

I live in a historically Irish neighborhood, on a block flanked by the huge St Patrick's parish church, rectory and school and by Mclaughlin's Funeral Home. I have seen a lot of police and fire dept funerals, but today was huge. Multiple blocks in the area, including my own, were closed to traffic to make room for FDNY vehicles - including fire engines and their Family Transport Van - to crowd around the funeral home. Dozens of FDNY personnel in their navy uniforms and white hats stood in formation outside the funeral home and when I got to the water, several blocks away, a fireboat was pulled up close to the shore sending huge arcs of water into the sky in tribute. The deceased man, James Riches, was a retired FDNY Deputy Chief who contracted 9/11 related illness after digging through the rubble at ground zero for six months searching for his sonn -also a firefighter - who was killed responding to the attacks. After that, he spent the rest of his life advocating for 9/...