Most AIDS workers count their dead, either consciously or unconsciously. They keep an invisible pack of toe-tags in their back pocket, catalogued by birthday and death-day. Some of them carry the dead bodies of their friends, lovers, colleagues and clients on their shoulders, hunching their backs, turning their gaze forever downwards towards the earth. Only in the insular world of AIDS work can you gain credibility by both years in the field and number of people you know who've died.
"Hello, my name is Joe Lunievicz. I'm the Deputy Director of the Training Institute at NDRI and I've been doing AIDS work for the last fourteen years." That's how I introduced myself today to forty-one AIDS workers at the beginning of a half-day course that I taught called "Overview of HIV and AIDS". It's the summer of 2004. In a couple of months I'll change the number of years to fifteen. October 1989 is when I started my career as an AIDS worker. It's such a simple thing to count years. Counting bodies is a whole different matter.
Hello my name is Joe Lunievicz and I'm the Deputy Director of the Training Institute at NDRI ...
Today was a heavy day.
Some days feel like this when I train, though thankfully these days are more rare than they used to be.
Teaching a workshop or a course is what I mean when I say I've 'trained'. Courses usually run from three to six hours but can go on for up to ten days. AIDS workers such as counselors, outreach workers, educators, case managers, or medical personnel make up my audience. If a course goes well I get a nice high, a feeling of satisfaction, of a job well done, the sense of making a difference in peoples' lives. Some days, though, it just feels heavy.
"Overview of HIV and AIDS" is one of my favorite courses to teach. I get to deliver lines like, "HIV is like superman once it's inside a white blood cell and has set up housekeeping - and there's no kryptonite to kill it. Antibodies," I tell participants, "are the soldiers of your body's immune system. They carry electro-chemical images, like mug-shots, of the invader they're supposed to get rid of." I explain that, "HIV carries a backpack of enzymes - chemicals that break things down and change them - like reverse transcriptase and protease." There's a puzzle-like way the information fits together - how 'means of transmission' depends upon knowing the definition of both 'exposure' and 'infection'. There's an almost sinister poetry to the names of the AIDS-defining illnesses: pneumocystis carinii pneumonia, kaposi's sarcoma, cryptosporidiosis, and toxoplasmosis. And even though, after all these years, I know all the pieces intimately, I still put them together inside my head as I teach, as if for the first time, with the same sense of wonder. It's a funny thing for me to find the science so interesting. In college, as a business major, the closest I came to science was an astronomy course, and I had difficulty passing that.
Because I have such a long history teaching "Overview ... " whenever I train it I can't stop myself from reviewing where I've been in this epidemic, what has happened, and who has died. The more I review, the more the material feels ... heavy. That's the only way I can conceptualize it. Paul, a Program Manager who works for me, calls it the effects of 'vicarious trauma' in a new course he's developing for front-line workers. He's a social worker and enjoys a clinical perspective. Paul and I worked together at Gay Men's Health Crisis, otherwise known as GMHC, for most of my time there. I don't care what he calls it. It feels heavy.
Hello, my name is Joe Lunievicz. I'm the ...
As I introduced myself today, I heard my own voice as if I were outside my body, listening to someone else. This has happened to me before. Heaviness and detachment are reminders that I'm still carrying bodies on my back. The passage of time has changed things. Distance has not. My office is only one block from GMHC's new office on 24th Street - their 'all-in-one-place' building. When I worked for them they were at three different locations in Chelsea. After September 11th, 2001, my current agency, National Development Research Institutes, Inc.(NDRI), moved from the ruins of Tower Two to 23rd Street and Sixth Avenue, and I had to smile at the irony. Once again I was working in what is called the AIDS Ghetto, with GMHC, Bailey House, New York AIDS Coalition, and The Latino Commission on AIDS all within short walking distance. Coming back to Chelsea was like coming home.
I've introduced myself over five hundred times in the last fourteen years - I just did the math - so I've heard myself change over time. I've added years of experience to my background, nuances of tone to familiar words, hand gestures for added punctuation, and downward glances with soft laughter to hide my discomfort.
Hello, my name's Joe Lunievicz and I'm the Health Educator - Assistant Coordinator of Training - Training Specialist - Coordinator of AIDS Prevention Programs - Assistant Director of the Training Institute - Deputy ...
Fourteen years is what feels so heavy. It's an albatross that is both good luck charm and mark of doom. I feel like Coleridge's Ancient Mariner telling his tale over and over again to wedding guests who just want to go back into the dining hall, get loaded and get laid. In the classroom, my words of introduction establish and legitimize my presence. Outside the classroom people hear these same words very differently. This experience is something I've found most AIDS workers have in common Ð especially straight ones.
It's happened many times at parties where I don't know many other guests. People circle me like inquisitive fish with drink glasses, freshly opened beer bottles, and light conversation. I introduce myself and ask them what they do because I can see it coming with the subtlety of a guided missile. I try to keep them talking about their work, but I know, eventually, the conversation will come around to me.
"And what do you do?" they finally ask, perhaps uncomfortable because I've kept them talking for so long.
"I do AIDS work," I say.
"You do what?"
"I do AIDS work," I say again, only this time louder and slower, more careful to pronounce every word because I don't want to say it again.
"You do what?"
"I do HIV and AIDS work in the AIDS epidemic."
"Oh," they say. "That... that must be hard to do."
Then there's a long, uncomfortable pause. We usually both stare at the floor, swirl our drinks around and listen to the ice cubes tinkle against glass.
I smile.
"Excuse me," they say. "It was nice meeting you," and move off in search of safer conversation.
As the epidemic has gone on, this exchange has changed.
Sometimes, instead, they'll say, "I have a cousin who had AIDS," or a brother, or a sister, or an uncle, or an aunt, or a best friend, or a lover.
"Had" usually means the loved one is dead so I say, "I'm sorry."
"That's all right," they say and move off after another polite moment, maybe a smile of remembrance, maybe a smile to cover their embarrassment at telling me too much. I haven't been to many parties since my son was born two years ago but meeting new toddler parents has put me in the same position. Only at the playground there are no drinks to hide behind.
Other colleagues have told me this has also been their experience. Three things seem to come up for listeners. One is that AIDS reminds them of death; their own, others or both. It's a downer as a topic of conversation, a reminder of our mortality - something better off left hidden and locked away. And after twenty years, let's face it - people are tired of the topic. The final thing that comes up specifically for straight AIDS workers is that friends begin to question who we are. Whenever straight friends find out what kind of work we do you can see them thinking, the questions scrolling across their facial features, "Why are you doing that kind of work? You're not gay, or an addict ... are you?" Or, "You don't have AIDS ... do you?" Straight people just think those things. Gay men ask the questions out loud, as I soon found out at GMHC.
These days, when I'm tired, I just say I do public health work. It's so much easier. When I train, though, the details are what the work is all about.
My name is Joe Lunievicz and I'm the Deputy Director of the Training Institute at NDRI. I've been doing AIDS work for fourteen years now and even just saying that seems to me to be so heavy. If you've been doing this work for a while you know what I mean. Usually I'll get a nod in silent agreement from a few people, and I'll smile back at them in acknowledgment. It's as if we're in some sort of secret club, and the nod, suddenly, allows me to see the bodies they're carrying on their backs. "I've worked on Long Island in Suffolk County, where, as we all know, there isn't any AIDS" - that's usually good for a laugh - "as a drug and AIDS educator and pre- and post-test counselor. I worked at Gay Men's Health Crisis for four and a half years here in the city as a trainer of volunteers and staff, and as the Coordinator of Program Development and the Young Adult Programs. For those who don't know, GMHC is the oldest and largest AIDS response agency in the world."
That's how I sum up my four and a half-year experience at GMHC. But in my head there are faces and images and dark dreams.
"... I got into this work on the flip of a coin. A man came in to talk to my co-worker and me at the YMCA Family Services, where we worked, about doing an AIDS training called 'Talking With Your Kids About AIDS'. Neither one of us wanted to go, so we flipped a coin. I lost, and here I am, fourteen years later..."
The first time I heard about AIDS I was in Honduras and a volunteer in the United States Peace Corps. It was 1987 and word had traveled through the grapevine that a volunteer had to go back to the states because his brother had died of AIDS. I was married at that time to a woman I'd been dating since high school and we were serving together. I didn't say to myself in any conscious way, "HIV doesn't apply to us because we're not gay," or, "HIV doesn't happen to people like us." I simply didn't connect HIV to either my wife or myself at all. It's not that I'd never heard about HIV or AIDS before 1987, because I had. I must have. It simply hadn't affected me personally. I hadn't had a good enough reason to listen. I remember seeing the volunteer the following Thanksgiving in Tegucigalpa when we all got together to celebrate. I didn't ask him about his brother. I don't know if anyone did.
My next connection to the epidemic was through Ken Bruce. When I got my first job out of college, as a Subscriptions Assistant at Alan R. Liss Medical Publications in Manhattan, I worked with a group predominantly made up of women and gay men. For almost six months I assumed they were all straight, until Ken arrived and explained to me that every man in our department, except our boss, was gay. I remember saying, "Really?" when he told me, and him nodding with a bemused look on his face.
Ken was an impeccably dressed, thirty-ish, gay white man who bought one hundred-dollar ties and thousand-dollar pants if he had the inclination and the money - though I think he rarely had the money, especially not on the salaries we made. He was born in California, had worked in an island salmon factory in Alaska, explained to me what a speedball was and how it felt to use it, and talked about his boyfriends the way I talked about my girlfriend. Growing up in a world where everyone was either really or apparently heterosexual had left me with some large blind spots in regard to sexual orientation. Ken was the first out gay man I'd known and he became my guide to who was who and what was what.
When I left Alan R. Liss, Ken and I kept in touch. He did some volunteer work at GMHC around the time I was in the Peace Corps, then was beaten up in Harlem while visiting a client and stopped volunteering after that. I think he told me this when I was home on vacation a year later. I don't know if he was beaten up because he was gay or because he was white, or because he wore thousand dollar pants - though that doesn't make sense because he wasn't robbed, only beaten - or because someone thought he had AIDS.
When I finished my Peace Corps service it was 1988 and the AIDS epidemic was raging. Yutta, the Peace Corps nurse, gave us vouchers to get an HIV antibody test saying, "Go get tested when you get back to the States. It's not a big deal." That was my pre-test counseling session. Now I train people to do pre and pre-test counseling and I use this as an example of what not to do because it always makes them groan with disbelief.
When I got back to the States, AIDS was on the television and in the papers. People were dying. I got scared so I threw away the testing voucher and didn't think about it for another year. Re-entry to the United States, after living abroad for so long in a poor country, was difficult enough. I found it uncomfortable to sleep on a soft mattress, and in an eerie way missed the chattering of rats over my head and the single low-flying bat that had kept us company in Honduras. There were soft carpets, soft couches, so much food to eat that my stomach moaned, and my own private bathroom to flush. Where were the dirt floors, the hardwood chairs, the rice and beans, and the roach-infested outhouse? I guiltily enjoyed the luxuries but I couldn't go back to the business world I'd left before I'd entered the Peace Corps so I looked for a job doing what I'd enjoyed so much in Honduras - teaching. A friend I played rugby with got me an interview with one of the vice presidents of the YMCA Family Services on Long Island and two interviews later I was hired as a health educator out in Suffolk County. It was a teaching job with many similarities to my Peace Corps work, and without a degree in education I was glad to get it.
That summer, my marriage fell apart, a casualty of the stress of Peace Corps service and readjustment back to the states, and my own difficulties dealing with the death of my brother.
In September the fateful coin toss occurred.
When people ask me why I got into this kind of work I don't know that I've ever answered them to their satisfaction or, for that matter, to my own. It's easier, I've discovered, to tell them it was the luck of a coin toss.
There are other answers I could give. "I do AIDS work because it helps me grieve and because it's my penance for doing so little when my brother's illness grew worse." One year older than me, my brother had been diagnosed as paranoid schizophrenic before the age of twenty. Some bad trips with mushrooms exacerbated his condition while he was in college in New York City and he self-medicated, as many schizophrenics do, with marijuana, which usually helps to quiet the voices. He was murdered while I was away in Honduras, on the Lower East Side where, by the age of twenty-eight, he was living in a welfare hotel.
Or I could simply say, "I wanted to help people." That's what so many of us Peace Corps volunteers said to each other when we first met on our way to Honduras. We weren't necessarily lying. We just never stated specifically who we were trying to help. We were never in the Peace Corps because we wanted to learn a new language, or find out about a new culture, or get those crucial two years' overseas experience so we could apply for foreign service work. It was never to escape all the problems we had at home, or to act out a savior fantasy that would never be fulfilled in the States. Altruism was easily digestible. Grieving and penance were not. The idea that doing AIDS work helps me, makes me sound more selfish, and now, I like that. I'd rather be selfish and live with the work than be a martyr and die from it.
I looked in my journals last night to see what I told myself was the reason I started doing AIDS work. Half-way through the first of seven books I'd kept during that time I found a dream that I'd forgotten, in an entry from just before I went on the job interview at GMHC.
January 24, 1991
Last night I dreamed I was hiding in a house that was falling apart. There were three floors. Windows, doors and walls were broken and boarded up. A man in dark clothes was chasing me the way he did in all my nightmares since I was a kid and he had short gray hair and glasses. I was a child and lying across some beams and plywood hidden in the rafters, looking down into the white daylight below me. I could see through to the first floor in that weird way you can see through walls when you need to in a dream and you are maybe seven years old. The ceiling space was small and dark above and the back of my neck prickled where I felt invisible hands touch me. I waited and waited to see if the man would appear beneath me but he didn't. Usually in my dreams he chased me up the stairs from the basement and grabbed my legs before I could reach the door to freedom but not this time. This place was different - one I'd never been to before in a dream. After a while I got down and walked outside to a parking lot with a golf club in my hand. It was a wood. I grew into a man as I walked, my arms and legs elongating, my muscles growing. The gray haired man sat in a car and laughed at me behind the closed windows. He was my father but I no longer felt powerless and scared at his presence the way I had when he called my brother and me into my parents' room and had us watch him beat our mother with a belt when we were four and three. I was angry twenty-one years angry. I smashed the window and the head of the four-wood broke off. I could see the number on the back of it as it bounced on the black tar of the parking lot. I jammed the broken end of the club through his head. His smile grew wider, his teeth whiter, his glasses shinier as I pushed it in and twisted. I left him there, his head leaning back against the headrest, pierced and bloody, his voice box cackling as if he'd been bitten by nothing more than a mosquito.
My father died in an upstate mental institution when I was fifteen years old. I hadn't seen him in person since we left him when I was three - after he'd attempted to kill my mother by banging her head against the basement floor, asking her again and again if she could hear the voices he heard coming from beneath the cold concrete.
But I saw him in my dreams.
My brother had the same illness my father had. The image of my brother's body on the morgue table, decomposed after lying two weeks in his room before a neighbor found him, sits next to my memories of my father. He'd been stabbed over thirty times. I see the sheet being pulled back from his face over and over again.
Ken Bruce left a suicide note. "I just can't take it any more." When I got back from the Peace Corps we lost touch. I found out he was dead one year after his body had been buried. None of his friends in California knew my address, or last name, so when he died they couldn't contact me. If I hadn't written him a letter to find out how he was I might still not know.
I can still hear my junior high school principal's voice, tinny over the loudspeaker, informing me of my best friend's death, "Students, I am sorry to inform you that your classmate Joe DePalmo was killed in a train accident today ... " It was the end of our eighth grade year, the first week of June, just before the Regents exams. He left school early, telling no one - not even me - and walked home during a downpour. He was hit crossing the tracks not far from the school grounds.
It's been years since any of them have visited me in dreams but until 1992 it was a common occurrence, though I never talked to anyone about these things until 1989, when I left my first wife and started seeing a therapist. Talking about the deaths of people I loved - and in the case of my father, hated - was not a skill I had, and its acquisition did not come easily to me. A colleague at the YMCA Family Services helped me with the process. She asked me about what was going on and listened when I finally started to answer. She was the co-worker who flipped the coin with me. She's my wife now and the mother of my beautiful three-year old son.
When I lost the coin toss I went up to an Ithaca Seminary School near Cornell for my first AIDS training - as a student this time.
Early one morning John, the Cornell worker in charge of recruiting workshop trainers, drove a carload of us upstate from Long Island. There must have been over forty of us arriving at the school from across the state, all of us strangers. We sat next to each other in a seminary hall and introduced ourselves.
Something happened to me during the process of the training that ensued.
We did an exercise on loss called an "AIDS timeline," in which I had to list all my AIDS-related events on flip chart paper in magic marker. My partner was a gay man who'd filled his chart with neatly lettered names and connecting lines. My timeline seemed very short compared to his. He spoke first. I remember he took a slow breath in then exhaled before he began. He looked away from me when he spoke of two lovers and several friends that had died. A smile flickered across his face when he was finished.
Then I talked. I started with the Peace Corps and Ken Bruce and their connections to AIDS. Then I talked about Joe and my brother.
I was in therapy and I was at work.
And I started to grieve.
At GMHC the boundaries got fuzzy, Work became life and life became work, and it became very difficult after a while to distinguish between the two. This was both horrible and wonderful. Horrible because it caused anxiety attacks that plagued me for years, along with headaches and a bad case of shingles. Wonderful because I could finally make up for not doing enough for my brother or the others.
Why did I start doing AIDS work? Because it saved me.