Names

2022-12-01 (World AIDS Day): Added more Related Content links.

2022-09-20: Where available, added locations of panels in the AIDS Quilt.


Book Cover, "The AIDS Epidemic," 1983, anthology of a NYC symposium

These are some of the people, all men, I have lost over the years, nearly all to AIDS. With the exceptions of those additions noted, I stopped actively maintaining this list in 1994. In alphabetical order.


  • William “Wolf” Agress, a lover, died in 1990
  • Andre, a bartender at the Tunnel Bar in the East Village, now defunct
  • Vincent Barnes
  • Jerry Bihm
  • Bobby
  • Colin Curran
  • Erez Dror, co-owner and -founder of the Black Hound Bakery in the East Village, New York City, now defunct (AIDS Quilt Block )
  • Jeffrey “Jeff” Glidden, 1958-1987, a lover (AIDS Quilt Blocks and )
  • Paul “Griff” Griffin
  • Martin Noel Jorda
  • David Kirschenbaum, 1962-1993, community organizer with the New York City Gay & Lesbian Anti-Violence Project
  • Art “Artie” Kohn, 1947-1991, founder of the BackRoom BBS in New York City, now defunct (AIDS Quilt Block )
  • John Larsen, a lover, died 2007 (Added 2021-12-01)
  • Jim Lewis
  • Luis
  • John Mangano, 1955-1991 (AIDS Quilt Block )
  • Jeffrey Martin
  • Morris Matthews
  • David Mayer (Added 2021-12-01)
  • Karl Michalak, 1958-1997
  • Mark Melvin, 1962-08-27 – 1992-06-03 (AIDS Quilt Block )
  • Norm
  • Tony Panico, my first lover in New York City, and the first person close to me to die from AIDS. His name appears twice on the AIDS Memorial Quilt, the first on Panel 05A when it was displayed in 1988. (AIDS Quilt Blocks and )
  • Charles Pope, barfly extraordinaire
  • Gordon Provencher, 1955-1992 (AIDS Quilt Block )
  • Tom Raleigh
  • Craig Rodwell, 1940-1993, founder of the Oscar Wilde Bookstore in Greenwich Village, NYC
  • Tony Rostron
  • Jurgen Schmitt
  • Giulio Sorrentino
  • Buddy Volani
  • Jeremy Wells
  • David Joseph Wilcox, 1957-1996

Tony's Quilt


Most of these men – including three of my ex-lovers – died before I was 35 years old. (A fourth died in 2007.) There are countless scores, hundreds, more whose names I did not know, whose fates I never learned, or who died since I stopped maintaining this list in 1994.

Related Content

Grief and Gardening: Ashes (Remembrance Day for Lost Species), 2019-12-02 One Score Years Ago, 2016-01-21
An earlier edition of this list: Names, World AIDS Day, 2009-12-01
David Joseph Wilcox, 1957-1996, 2008-01-22
In the Shadow (How shall my heart be reconciled to its feast of losses?), 2007-08-28
Back in the Day, about the Backroom BBS, my first online community, in the 1980s.
Grief & Gardening #1: 1, 5 and 25, 2006-09-04

Links

NY Times Obituary for David Kirschenbaum (PAYWALLED)
Wikipedia: Craig Rodwell
Reagan’s AIDS Legacy / Silence equals death, Allen White, SFGate, 2004-06-08, following Ronald Reagan’s death

World AIDS Day

The Last Goodbyes

20200926_213307

2020-09-26 21:50

I said my last goodbye to my mother today. I don’t think she heard me. I whispered, because I didn’t want to disturb her, and she’s hard of hearing as it is.

I don’t expect her to rally again. I don’t expect any more lucid minutes, or moments. I believe our mother is gone, but her body doesn’t know it yet.

The only time today she exhibited any arousal – not even awake, really – was when the home health aide came this morning and we changed her. She only accepted two syringes of thickened cranberry juice, and waved off the rest. She didn’t even wince when we pulled her higher up on the mattress, an act which was causing her excruciating pain just a few days ago.

She fell asleep after that. She slept all day. She still sleeps now. Her breath is shallow, but easy and regular.

It’s her third day not eating.

We’re just waiting, now.

2020-09-28, 22:00

It’s two days later. Five days since she’s eaten anything. It’s now been a week since we officially entered hospice. We are still just waiting.

She sleeps. She no longer has any even semi-conscious moments. Mornings had been the worst time for her pain. We’re still only moving her once each morning to change out her incontinence supports and make sure she’s not developing any compression injuries, i.e. “bedsores”. During this morning’s changeout, she had no reaction. She is gone. Her body just hasn’t caught up.

Goodbye #2

Still, I gave her another goodbye this evening. I held her arm and hand, the “bad” one, on the right side of her body, affected most by the cerebral palsy she was born with. Among other things, I said her hand was beautiful to me, that it always was. This goodbye was less tearful than Saturday’s. There is some acceptance in me, yes, but also I’m just exhausted.

When my father was dying, they drew up reciprocal documents naming each other as health care proxies, powers of attorney, and estate executors. When my father died, those roles and responsibilities transferred to me. There are some things we can do beforehand. Since my mother is no longer responsive, and can no longer speak for herself, I’m acting in accordance with her wishes.

We “check on her” adhoc, or whenever we pass by the room where she’s setup. She’s no longer restless or agitated in sleep, which is good. So for me, euphemistically “checking on her” means first looking to see if she’s (still) breathing. If so, I’ll check her temperature at her forehead, her hands, her feet, and adjust her covers accordingly. If her breathing is a bit labored, I may lower the head of the bed even further to reduce compression on her diaphragm.

20200926_214340

At some point – soon, I hope – one of us will walk in on her and she will no longer be breathing. Whoever finds her, son or daughter, will tell the other. We will tear down the dams and release the rivers of grief we’ve been holding back. We will sob and weep, wordlessly holding each other, now just the two of us left in our little family. When we’re ready, I’ll start making the phone calls that will set us on our journey away from our mother.

I’ve already had the last conversation I will ever have with my mother. I’ve said all the goodbyes I can. I just want this part to be over.

Related Content

2020-09-25: Waking Up From Death 

2020-09-23: The Night’s Watch

Links

The Night’s Watch

Raja

While the world burns down around us, I am sitting in a darkened room, with just the sounds of a small table fan and an oxygen concentrator, watching over my mother. My only company is Raja, one of the house cats in my sister’s house, keeping watch over my left shoulder.

John and I drove down from Brooklyn to Ocean County, New Jersey on Friday, after my initial physical therapy consult, part of my ongoing recovery from hand surgery three weeks ago. I had packed the night before. I’d been in daily conversation with my sister, by phone or text for the prior week, as our mother went into a steep, rapid decline. Of greatest concern was her lack of appetite; we have to crush all her meds to administer them with her food, all of which is pureed, mashed, or otherwise pulped.

It’s the longest my sister and I have spent together under the same roof since I left college.

Dissociation is my superpower. I have dressed and undressed my mother, seen her naked, wiped her bottom. I can attend to her, asking her the same question over and over, until I get a glimmer of understanding. Or I can move on, passing over the grief I feel that she is gone, cognitively, that I’ve already had the last conversation I will ever have with her, shared the last joke, excited the last smile, or smirk, from her aged lips.

Just now, a deep, low, relaxed groan escapes her. Startled by the sound, and its possible implications, I look up at her. Yes, she is still breathing, shallow and rapid, as she has been most of today. 

I am afraid to leave her side because I don’t think she’ll last the night. I have never experienced another’s passing. Some selfish part of me wants to be here for that, for her, for me. Like maybe there really is something? That it’s not just physics and chemistry and homeostasis keeping the machinery running? 

I don’t believe that, of course. But I understand the comfort that could be found in such beliefs. Especially now, sitting here in a darkened room, kept company by the sounds of tireless machines, each to its purpose.

Oxygen Concentrator

Related Content

Links