AIDS Volunteerism in the '8Os
In the late 1980s, I decided to volunteer with a New Orleans organization that provided services to people with AIDS. There are any number of reasons I was interested in AIDS, the principal one being that I wanted to help. After talking to a friend in the gay community in New Orleans, I came to realize that the illness was cutting a large swath through the population and that many had lost virtually all of their friends.
I made many friends during the time I worked with people with AIDS. I have since lost touch with all of them. The work was the thing we had in common and I no longer do it. I have thought of going back at times, but I know it is not right for me now. It was one of the saddest, scariest, most fulfilling and most emotional times of my life. I am proud of what I did. I went to areas of the city that made my husband rant and rave, but I went anyway. I found myself in situations I thought I could never handle, and I handled them. But I know I could not do it now. It was for that time and that time alone that I was brave and capable in that arena. I no longer am. The whole idea paralyzes me now.
I lost some friends because of my work with people with AIDS. The climate was different then. People were angry and afraid and didn't like the idea that I was visiting someone with AIDS, then coming to work. I was interviewed on the local TV channel on the 6:00 o'clock news. Of all my friends and acquaintances and all those of my husband, one man acknowledged the interview. I always valued his friendship more after that. Those times are hard, when you know that eventually everyone will understand and it will get better, but it's not better "now" and you are living in "now."
I was assigned to five different men as a "buddy." That meant that I would visit them, take them places, check on them, pretty much be a friend to them. I would like to write about each of them because I would like a tiny piece of them to live here on earth because of my writing; so this will be the first of a series of stories about those five men. Of course, all the names have been changed to protect anyone who might need protecting. Other than a short poem, I never wrote about my work. The emotion and the loss was too raw for many years. There has been so much written about AIDS by people far, far more knowledgeable than I am who contributed and, of course, lost far more than I did; yet I am determined to give a bit of life to my friends by writing about their illnesses and deaths. I do not wish to spur a religious or political debate with these writings and sincerely hope that is not the outcome.
My first assignment was with a man named Blaine. He lived in the Uptown area of New Orleans, a few blocks off St. Charles Avenue. Although I had studied my handouts from the training conference, asked 10,000 questions, and thought I was prepared, the first day I visited Blaine, I was so intensely afraid that my hands were sweating and the rest of me was ice cold. I had studied enough about AIDS to know that I wouldn't get it unless I jabbed myself with a needle or had sex with Blaine, neither of which was going to happen. I wasn't afraid of getting sick. I was afraid of being a bumbling idiot, saying the wrong thing, not knowing what to say, or just "bombing" in general. I was 42 years old then. I remember thinking I might be too old for these young men to relate to. Looking back now at the age of 66, I wonder what I was thinking.
Blaine lived in a small, neat cottage-like house on a street that crossed St. Charles. As I approached it, I was doing deep breathing to calm down. I rang the doorbell and waited. I heard a voice call out. "It's open. Come in." I did. There in the center of a neat and organized living area sat a man in a wheelchair. Although I had studied Kaposi sarcoma, the cancer that people with AIDS often contract, I was not prepared for the bright purple of the lesions that ran across his forehead and over his arms. There was an oxygen tank next to him on the spotless hardwood floor.
I pulled a chair close to him and sat down. I asked if he needed anything, then we began to talk. Blaine's family was from the Northeast. He said his mom and dad had been to visit a month earlier. I never knew if they stayed in touch by phone and never wanted to ask. He didn't mention them again during the month and a half that I knew him. We talked for a long time that first day, about holistic medicine, about raising one's vibrations by the food one eats, about metaphysics in general. We talked about AIDS and the friends he had lost. It was a good visit. We connected. I was so relieved that I felt drained of all energy. The visit was a success. I asked if he would like me to come back and he smiled a smile I came to cherish and said, "If you would like to come, I would love to have you here."
And I did go there at least twice a week. I remember going around 8:00 one night because he told me he sometimes became afraid at night, thinking about dying, thinking about how it would be. We talked for a while. He had neuropathy on the bottom of his feet to a point where they were painful all the time. I asked if he wanted me to massage them. He said that would be wonderful and told me where to find rubber gloves. I had read enough about AIDS to know I wouldn't contract it by massaging his feet and told him forget the gloves. He said he thought I should wear them. When I asked why, he said, "Just because they are my feet." For some reason, that broke my heart. It touched me in a way nothing else he might have said could have.
I massaged his feet with my (bare) hands for five minutes or so and suddenly the door burst open. There stood three handsome young men with incredibly shocked expressions on their faces when they saw me. One of them finally walked over to me and whispered in my ear, " I don't know who you are, but as far as I am concerned, you are an angel." They had brought a six pack of beer and sat with us and drank it, catching Blaine up on what was going on at the beauty shop where they worked and where he had worked at one time. As they left, they each kissed both of us good-bye, one of them whispering, "So glad you're here. No one else comes."
Over the next few months, I visited Blaine, read to him, talked to him, and got to know him. He was a kind and gentle man who had made his peace with dying. He was calm without tranquilizers, which he refused to take.
One Saturday, I had planned to go visit Blaine later in the afternoon. I always called first to let him know I was coming and see if it was a good time. No one answered the phone, which was unusual. I called several more times. No answer. At a certain point, I felt a totally new and unfamiliar sensation, a completely encompassing feeling of love so overwhelming it left me weak. I had to sit down and regain my strength and equilibrium. After I told him what had happened, my husband, Joe, offered to take me down to Blaine's to see what was up.
When we got there, there was a note on the door, left by the young men who had visited the night of the foot massage. They had taken Blaine to the hospital two hours ago, according to the note, and had left a number to call. We didn't have cell phones in those days and I waited until I got home to call the number. I spoke to the man who was the most gregarious and the obvious leader of the group who had visited that night. He told me that Blaine had died around an hour and a half ago, which meant it was at the time I was surrounded with such love and peace. I never knew whether it was Blaine coming to say good-bye or if it was Blaine crossing over to a place where he finally found acceptance and peace.
I asked the guys if they needed help clearing out the house. They said Blaine's parents were coming to get his body and take it back home and would clean out the house.
Every now and then, even 20 years later, I think of Blaine sitting in his little cottage, waiting to die. There were so many who viewed AIDS as a curse on the gay community, a punishment of some sort. My belief then and now is that AIDS was an opportunity for us to learn compassion and tolerance, to be able to put ourselves on the line for those who were in need, to whatever degree we could. My experiences were tiny compared to many who gave almost all their time trying to make things easier for people with AIDS. There were some amazing people involved in it all and I've never forgotten them. They taught me so much about giving.
I have a magnet on my fridge that says, "Every day, do something that scares you." It's a quote by Eleanor Roosevelt. I think it's good advice. I remember how terribly afraid I was to go into Blaine's little house. I think overcoming that fear gave me experiences that taught me that no matter how different we are, we are all one and are here for the purpose of learning to love one another. It also taught me that death may be something to embrace, not fear.
The organization I worked with offered a workshop on death and dying to those of us who had had multiple people we were assigned to who had died. It was therapeutic for me in that I realized so many of the others had lost so much more than I, many of them long-term partners. The interesting thing for me was that all of us, despite doing what we had done were left with the feeling of having failed. I know that's how I felt and I could sense how some of the others felt. It has finally gone away after all these years. I have a box of notes and letters from relatives of the men I was a buddy to. I take them out and look at them sometimes. They no longer break my heart but, instead, make me realize that my failure was in my own mind and not reality. I feel enriched by knowing the five men I helped. They took pieces of my heart when they left, but definitely left behind a bit of their own hearts with me.
So many years have passed since I did this work that it seems as though I'm writing about another person, braver, stronger, more determined, with more faith. Unfortunately, I have grown more realistic and more complacent. Life does that.