Observations

        Making my way to the AIDS Memorial on this bright, cloudless day I found myself thinking about all the people we have gathered there to remember. – Kathy, Joyce, and so many others.    Today we are remembering Dr. Iris Long yet another ever-present member of ACT UP.  Paraphrasing Jim Eigo, Iris did not have to concern herself with AIDS at all.  She was a straight woman, at least 20 years older than most of ACT UP, and more than 40 years older than I am.  She was a scientist, a chemist, and when she first read about AZT, she realized that her particular specialty could help fight HIV.  So she showed up at GMHC, never having knowingly met a gay person, and volunteered.  That wasn’t a good fit – they needed buddies and hotline volunteers, not scientists.     When she got to ACT UP, shortly after it was founded, she had found her place in the movement.  She he...

  Shiva     The first week back after surgery was hectic with a lot to catch up on. Our new social worker started, I had a couple of medical appointments, and some of our many June fundraising events made for late evenings.  I could not fit Natalie’s wednesday funeral in among all that, so I  decided to go to the shiva thursday after work.     Usually when I go to Newark I take the train, but since the bus station is so close to my office I figured that would be most efficient.  Entering the bus station I cut through every day, my tired body wanted to follow the  usual route home, but instead I stopped in the bathroom to see if some cold water would wake me up.  Dodging a woman mopping, I nearly collided with an adult woman who was roller blading on the wet tile floor while talking to her young daughter (not on rollerblades) who was in a stall.      The bus was old and...

    May 27 th  2028   When Mike called me at 10:30pm, I knew something was wrong.  When we were younger and he was still drinking heavily, late night calls- or even showing up at my house- were not unusual. Now that we are both middle-aged and he is a husband and father, he’s much more likely to call mid-afternoon with an assortment of family members in the car.   I knew his mother, Natalie, had been in the hospital having a hard time with diverticulitis, so it wasn’t a surprise when he told me she had died. After years of heart trouble, the additional strain was too much.   I said the things you say when there really is nothing to say, I’m so sorry and I’m here if you need me, words like pennies dropped into a deep black well.   Hanging up, I thought about Natalie.  Mike was my 9th grade boyfriend when we were both 13 year old nerd kids at Stuyvesant, so I have known Natalie for three quarters of my life.  When we were yo...

  ' May 30th 2026 Although the incision is long, running from the lower part of my skull to a point between my shoulder blades, it doesn’t really hurt anymore. The pain that’s left is from the muscles being disrupted during the surgery, creating spasms. Flexeril works pretty well for that but you have to take it three times a day and the pain breaks through when it wears off. Today was an Impeach, Convict, Remove demonstration at Trump Tower. One hour standing still holding a sign seemed manageable.  It was 60 degrees and sunny when I left Brooklyn, fine for a long-sleeved shirt and sandals, but by the time I got to midtown it was extremely windy, and the people waiting to start the action were trying to stay warm.  The police are used to us by now so just one community affairs officer wandered over to talk to Jamie, mostly about his 12 hour shift and all the security preparations for the salute to Israel parade tomorrow. After complaining for a while he asked “how long...

5/29/26  Today was my infusion. When Kayla, my usual nurse, saw the neck brace she was startled and asked me what happened but the nurse she had been training that day said "I remember. You told us you were having a tumor removed." She was the one who put in my IV today and because I had several regular IVs and an arterial line during the surgery, she was struggling to find a spot. She missed the first one, but then she got it on the second try.   It took an hour and a half for them to send the medicine up from the pharmacy. They don’t mix it ahead of time because it costs almost $6000 a bottle and they don’t want to waste it if I don’t show up. After the infusion, I had to get to the Apple Store at Grand Central so I decided to take the 57th St. bus to Lexington and then the southbound bus on Lexington. At the bus stop, I encountered two elderly ladies also waiting. One had a more traditionally grandmotherly appearance- white hair, a paisley shirt, a couple of decorative sc...

        By Thursday, the drains were ready to come out.     It’s a weird feeling, kind of a slithering sensation as they literally just yank them out.     A young social worker from my surgeon’s team stopped by to ask the usual pre-discharge questions.     “Do you live alone?” “do you have stairs?” etc.     I know my answers will make them nervous – I live alone and I have stairs – but I am careful to downplay both so they will let me go.     Being discharged earlier than expected has Misty frantic about finding someone to pick me up, but I really want to be home with my cats – and my correct meds.     She could see I was not in a great mood, so I explained about the Vilazodone, and the random swollen spots on my head, and the extent of the numbness and the issues with the brace.  A passing aide overheard the part about the brace slipping over my face while I am sleeping and says “I ...