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AIDS Volunteerism in the '80s

Updated on June 11, 2017
Marsei profile image

I have lived in a suburb of New Orleans for 40 years. I work at home with my cat Lucy and my husband of 50 years, Joe.

End of a Long Journey

There were many of us who volunteered with AIDS organizations in the '80s who eventually hit a wall and simply could not bear to lose anyone else. After Treme, my last buddy died, I hit that wall. My group furnished a grief workshop for a few of us who had had multiple "buddies," people with AIDS. Attending the workshop, I learned that my experience was not so different from that of many others. All of us were dealing with burnout, and furthermore, with guilt at the idea of calling it quits. It seemed like a defeat, not to do the work anymore. However, when my dreams at night became a collage of sad incidents involving dying and death, it was time to back away. And I did.


Treme

I don't know what to say about Treme's appearance except that he was blond and what we used to call "cute," the equivalent of today's "hot," I suppose. He was blond and had very blue eyes and tan skin and although he was thin from the illness, he still had a nice build. He had a way of looking straight into your eyes. And when he smiled, it came from his heart, that smile, and all the love he had for life was plastered there on his face. He was never still. At first I thought it was the illness that caused him to be so antsy and always moving, but after meeting friends who had known him for years, I realized it was just part of who he was. He was fond of grabbing my hair and pulling it back and saying how much better I'd look with it short or, like another buddy before, telling me what bad taste I had in clothes and showing me things in Vogue that would look "stunning" on me. The truth was they would look ridiculous, but I gave up trying to tell him that.

Treme didn't talk a lot about his illness to me. He began to a couple of times and stopped abruptly midstream, saying: "You don't need to be burdened by this." That was the essence of Treme. His life was slowly evaporating and yet he was determined not to burden anyone with that fact. His mother told me that when he was a small child, he would bring her a toy every day and say: "Mommy, I'm giving this toy to you." That was also Treme: So much to give and so little time.

Tony was Treme's partner of many years. They were both beautiful men, always looking like they wandered out of GQ and never in any way aware of how really attractive they were, especially together. Tony was taller and more muscular with long black hair that hung down his back. His skin was darker and he had very dark eyes. His dark good looks contrasted with Treme's fair good looks turned heads anytime they went out together.

Jezebel

Treme had a cat named Jezebel. She was a holy terror. During the times when he was in the hospital, she sat in front of his apartment door, inside, waiting for him to come home. She didn't eat and scarcely drank. I used to go sit with Tony, Treme's partner, sometimes on the nights when Treme was so bad they wouldn't let Tony visit. Jezebel would bare her teeth and hiss and spit at both of us if we tried to pet her. She only wanted Treme. When Treme would call from the hospital when he was out of intensive care, Tony told me she would howl the whole time they tried to talk. When Treme came home, she never left his side and would hiss when he left her, even to go to the bathroom. She was a coal black stray he'd taken in with the greenest eyes I've ever seen on any cat or human. She wandered up eight years before I met Treme and on the day he died, the neighbors said she sat on the porch and howled three horrible howls, then she left. No one ever saw her again. Tony and I put up posters and walked the neighborhood for days, looking for the mourning cat, but there was never a sign of her.

Writings

Treme liked to write. He was rather good at it and I often asked him why he didn't try to publish his work. His answer was:"I don't do it for anyone but myself." In a tablet he left out on a table, II found something he wrote about a month before he died. It touched me and also gave me a glimpse of how compassionate and truly good he was. It was something to this effect: "I must not cling to life because it makes everything harder for those around me to see how much I hate to leave." I noticed that he began to let go, ceased to talk about the future, talked about "when I'm gone" more and more often, thinking of Tony, his parents and even me. His parents, unlike the parents of many of the men I knew who had AIDS, were totally supportive and loved Treme as much as a parent can love a child. They were heartbroken with his diagnosis. They thought of Tony as their son-in-law and probably considered him even more like a second son. Another time I found a scribbled note on a piece of paper where he had written: "Mom and Dad, you gave me this life, but don't think you can keep me from losing it."

The Co-op

During the '80s there were numerous co-operative gardens around the area of New Orleans where Tony and Treme lived. Gardening was something Treme loved. He spent hours and hours weeding and hoeing the vegetables he and Tony had planted in the very early spring. As the summer became hotter, he tired quicker and spent less time, but he made the effort every day. One morning he called Tony and me to the back of the garden. He said he had a surprise for Tony. As we walked toward the back Treme caught his breath. The entire back fence was covered with morning. glories, the blue of the flowers catching the summer sun and glowing in its light. Tony loved the color blue and often said that it was why he loved Treme, his blue eyes. They walked into each other's arms. I walked away and left them alone together. I knew time was drawing short. I had traveled this road many times before and knew the angular look of bones with not enough flesh, the shaking hands, unsteadiness on the feet and mostly, the overwhelming tiredness Treme never acknowledged, always saying he was spoiled and lazy when he went to lie down for a nap.

The Taxi

One of the many stories from this period in my life that haunts me and troubles me to write of even now is one night when Treme became very ill and was having trouble breathing. Neither of them had a car and relied on friends or the streetcar to get around. It was very late and they wouldn't have called a friend that late at night. At almost midnight, they called a cab to get to the hospital. They waited on the corner outside their apartment. When the cab pulled up and the driver got a good look at Treme's pale, gaunt face and rail thin body, he rapidly drove away, leaving them standing on the corner. I dream of that particular event sometimes even now. It breaks my heart to think about those two gentle and kind men being left standing on the corner, one gasping for breath, the other crying because he didn't know what to do. They went inside and called an ambulance, which they couldn't afford and which their insurance wouldn't pay for.

Good-bye from a distance

Tony called me the day he took Treme to the hospital for the last time. I think he knew I was approaching the end of any emotional strength I had left. We had talked often about my experience volunteering with other people with AIDS. He said it helped prepare him and it certainly helped me just to share it with someone. He said: "Treme's parents will be there with us. Don't come. Go home and sit in your yard and think about our good times. Don't come this time."

I took his advice. I sat in my backyard with a bottle of vodka, which I drank from a water glass. I drank almost the whole thing but never really felt its effect. I did think of good times, particularly a day at the lakefront. The three of us went fishing. We didn't get a single bite but I remember the sun and wind and Tony and Treme, so much in love and for just that one day, not thinking about what was ahead. I remember Treme's blond hair blowing in the wind from the lake and how alive and happy he was.

Treme was my last buddy. I left the organization after that. They called me to come back and facilitate a role-playing training session. I barely made it through and told them not to ask me again. I stayed in touch for a few years with a few friends, but lost contact eventually. I think about dying more often as I get older. I don't think I'm as afraid as most. When I see it coming, if I do, I hope to be as selfless as Treme, always thinking of making it easier for everyone else.

I learned so many things from the five men I worked with during that time period. I learned about overcoming fear and living for the moment, about being able to have a good, happy, productive life without the approval of society. I learned about facing the unknown with courage and faith and dignity. Mostly I learned about not giving in to fear. We often visit the countryside and when I go out at night and the stars shine and twinkle, I tell myself that they are up there somewhere and that I will see them again one day: Blaine, Ritchie, Frankie, Jeremiah, and Treme.

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    • Marsei profile image
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      Sue Pratt 4 years ago from New Orleans

      Johnny, your comments made my day. I think that's why we all write, hoping to touch someone else and brighten things for them. That period of time was something I had pretty much buried until I wrote the five articles. I think it was a healing of sorts after all these years.

      I encourage you to say your truth. It is the only way people will ever understand. And sometimes you will touch and hearten someone as you say I have you. I live with hope and possibility now. It's one of the things life has taught me is necessary.

      Thank you for commenting.

      marsie

    • jonnycomelately profile image

      Alan 4 years ago from Tasmania

      Marsei, I am very touched and heartened by your Hub here. Thank you so much.

      Life is not all a bed of roses, is it? We like to remember and talk of the good times. The bad times tend to get pushed behind the curtain, pretend they don't happen, for fear of boring people or hurting their feelings.

      To speak of ALL aspects of a relationship like you have done is awesome. It allows me to have more courage in saying "my truth."

      In the early '80s I had begun to have a fairly good social life, having been very much closeted for most of my life up until that time.

      Then disaster struck. HIV and AIDS began its journey into our lives. The social life fragmented. The effervescence of the gay venues disappeared as more and more acquaintances either contracted AIDS or became helpers for those who had it. I felt very much alone again, not having the social strength to keep with them.

      It is only now, as I am getting older, that the world is taking on much more perspective and reality for me.

      To read what you have said and to get a greater sense of hope is -- just wonderful.... what more can I say?

      Thank you again, and all power to you in finding more joy in your life.

    • Marsei profile image
      Author

      Sue Pratt 4 years ago from New Orleans

      Thanks so much Cat. Seems I was a different person then. Could not even begin to think of doing anything similar now. I'm over the guilt; I think all of us who did the work finally are. It's like another life.

      Thanks you again.

      marsei

    • cat on a soapbox profile image

      Catherine Tally 4 years ago from Los Angeles

      Hi Marsei,

      It takes a very strong person to enter into a relationship with someone w/ a terminal illness. You did it 5 times! It's no wonder that you "hit the wall." I hope that you have no remaining guilt for walking away and instead can focus on what comfort you were to each of them and what value came from the experience. You've expressed it all so well in your closing paragraph. Thank you for sharing Treve's story.

      All of my best to you,

      Cat:)