Observations

  I woke up the day after my infusion to find the room spinning.     Even once the spinning stopped, I still felt like I was a child in the back seat of my grandmother’s car on the winding mountain roads of West Virginia where we would go visit her family.     I used to sit there with my eyes squeezed shut complete missing the beautiful views while using all my will power to keep from puking.     I would keep my mind on the prospect of seeing my great aunt Francey, the one most like me, with her heavy freckles and love of pickles and the sheer stubbornness that kept her living in her house way up in the Cumberland mountains despite her advancing age.     She grew her own food and stored it, canning and drying and stowing her potatoes in the cool cellar, to last her through the months when the ice on the steep road down would trap her up there.   Dizziness and nausea are common the day after IVIG, but it was an unfortunate day for it to h...

I woke up and reached for my glasses.     No glasses. Every now and then the cats relocate them during the night.     I have tried telling them “fetch glasses” since I know they know where they are but I was met with wide-eyed stares.     Looking for my glasses without my glasses is a problem since I have to feel around while trying not to step on them.     Usually when this happens, it takes about half an hour to find them, but on Thursday the search went on and on.     It got to be the time to leave for physical therapy so I called to cancel.     The receptionist informed me that they were going to charge a fee since it was less than 24 hrs notice.     I wondered how they thought I was supposed to know that my glasses would get lost 24 hrs before it happened.   Two hours later, I finally found them in a crevice between the furniture.  By then the cats had gotten tired of watching me search and fallen ...

  Sunday morning the air was clear, the smoke and particles having been washed away by saturday’s torrential rain.  I was getting ready for Jaysen and Jeffrey’s memorial, pulling my hair into a ponytail with some difficulty because of my problematic shoulder, when the Very Sick client called, upset because he felt that the latest new doctor was trying to rush him out of the hospital before he’s ready.  I listened to his complaints, and then he got more serious.  “It’s like a whisper telling me ‘something ain’t right, J.’ it’s almost robotic. I know because I feel it. Something’s about to be wrong.”  It’s this instinct that is responsible for his remarkable survival, prompting him to head to the hospital in the nick of time over and over.  Finishing that thought, he switched back to his less serious side. “Thank you for listening to my bullshit,” he said in the exact tone of someone saying “thank you for listening to my TED talk.” ...

  7/17/26   Sunday night, I was in bed, drowsy, but not yet asleep when the Very Sick client called from the ER.  “ I’m really afraid of what I’m about to do,” he said.  A sentence like that will wake you up fast.  “Maybe that’s a sign you shouldn’t do it,” I told him.   “Nothing is going right for me,” he said.  “You just go to sleep and you dream about something chaotic and then you wake up and you don’t even know you almost died.  I did it four times,” he said referring to the times he has flatlined in the hospital and been resuscitated.  “I know,” I said, “they keep calling me.”  He was having a hard time when I spoke to him earlier, panicking because the ER was so packed they didn’t have an isolation room to put him in and he was in a hallway with his wiped out immune system surrounded by other patients who might have germs.  Now the panic had given way to despair.  “I...

I woke up with Pete’s voice in my head and Marley on my chest.    My life flows on in endless song Above Earth's lamentation I hear the real, though far off hymn That hails the new creation Above the tumult and the strife I hear the music ringing; It sounds an echo in my soul How can I keep from singing?   What though the tempest loudly roars I hear the truth, it liveth What though the darkness round me close Songs in the night it giveth No storm can shake my inmost calm While to that rock I'm clinging Since love is lord of Heaven and Earth How can I keep from singing?   I sing it to Gretchen while I am dusting her off because she decided to crawl behind the unused stove for some inexplicable feline reason.  Gretchen, I have learned, is a cat who does not appreciate any form of grooming by humans, but she approves of the song and starts to purr.    Washing the dishes as rain pours down outside the kitchen window, a very welcome break in the heat, ...

7/6/26   Today I had a meeting with the Keith Haring Foundation to talk about possible funding.     We got on zoom, and their Director, herself an artist, started to tell me about Keith Haring, his life, and his activism. I stopped her. “I remember,” I said, “I was there. I was in ACT UP.”     “You were at the meetings at the Center?” she asked, and I nodded yes.     I didn’t mention it, but my awareness of Keith Haring goes back even further because he used to draw on empty black spaces meant for subway ads at West 4 th   St and I passed them all the time as a kid.   Later she asked me how New Alt came about, so I explained that it had grown out of my years as Director of Sylvia’s Place.  That satisfies a lot of people, but she kept going, wanting to understand how I had gotten from being a teen in ACT UP to starting New Alt.  I took her back to the Neutral Zone, and then CASES and our HIV peer educators before that....

  7/7/26   After three days of extremely hot weather, the church basement felt like a sauna today.  I thought the volunteers would probably serve a cold meal, but they had the stove on, adding to the heat.     S., an alum, came in wearing their heavy black winter coat which had acquired some tears since the last time I saw them.  When we first met S. they were an ambitious young person with some college under their belt and always impeccably dressed.  After years in the drug-infested HIV SROs, they had gotten into crystal.  As the addiction deepened, they started pointing, injecting it with any syringe nearby, creating deep pockets of infection that landed them in the ER over and over.  The drug ravaged their mind as well as their body, reducing an articulate, polite person to shouting incoherently at nobody in particular.  It also created paranoia, so that despite the heat, I could not convince them to...

It’s beginning to feel like the bad years of the AIDS epidemic again when deaths were happening so frequently that you didn’t have time to absorb one before the next and your calendar was filled with memorial services.  We didn’t even make it to Iris Long’s memorial on June 13 th  before the news came that James Wagner had died on June 7th.  Then on June 30 th , our client Nahla died.   Yesterday I was sluggishly getting breakfast ready while trying to stay cool on a 100 degree day, when Antoine, a long ago client from Sylvia’s Place called.  He was calling to tell me he just moved back to NYC and ask me for help getting in contact with his old friends, but while we were talking he mentioned that Bradley Curry was gone.   Sylvia’s Place is located at Metropolitan Community Church and when I was the Director there, Bradley was the Pastor’s omnipresent assistant. He was a small, bald man who was always on the move, seemingly single handedly hol...

  6/30/26 Nahla One of the things that happened in the tumultuous time right after Kate died was that I forgot how to sleep.  I had no idea that was even possible -I had always been someone who tilted towards the sleep too much side -  could never stay up until midnight on New Year’s Eve, was always getting woken up by the other residents of the queer dorm tipsily belting out MacArthur Park to the point that I wanted to shove their faces in the rain-soaked cake.  I assumed that sleep was as automatic a function as breathing.  Then, with painful irony,  it disappeared at the same time as the one person I could reach for in the middle of the night, whether in person or on the phone.   It didn’t  really seem to matter since everything had been subsumed into a dismal grey miasma with intermittent stabbing spikes of agony. Day, night, awake, asleep, alive or not, none of it made any difference for a long time.   ...