A transcript of an interview with Pasquale Natale, conducted for the for the 2009 Safe Harbor/Provincetown’s Response to AIDS documentary sponsored by the Provincetown Public Library and AIDS Support Group of Cape Cod. Pasquale Natale moved to Provincetown soon after discovering he was HIV positive and became active at the Provincetown AIDS Support Group as a volunteer and client advocate. He was the Founder of the Annual Aids Support Group Auction which became one of the Support Groups largest fundraisers, raising well over a million dollars for the organization. Pasquale also is a successful artist and respected member of the Provincetown art scene.
My name is Pasquale Natale, at the moment, in about 2008, I’m 63 years old. Here in Provincetown, I’m being part of the oral history of the town’s response to the HIV/AIDS when it first hit town, the very early eighties.
First of all I’d like to go on record and thank the Provincetown Library, in specific, Mary Nicolini and Mick Rudd for making this oral history possible. It’s something that no other organization has been able to do and they applied for a grant for it, specifically for this, and I think it’s outstanding. So, thank you.
My part, in addition to being around, being here during that period… I think I’m going to first go into the part that I helped create. I moved here permanently from Boston in 1986. I had been diagnosed HIV positive in 1985. When the test first came out I went to Mass General, I needed to know. I’m one of those people… I gotta know… and I tested positive and I put that information away. I assumed I would never get sick. Back then there was ARC it was being positive, it was AIDS related complex they thought, and then from that some people would go on to get HIV/AIDS. So, even though I thought I would probably would beat it, somehow how inside, I decided that if I didn’t, because most of my friends were becoming ill, if I was having a short life span, I wanted to live somewhere where I felt good and so I moved to Provincetown. I was fortunate enough back then to have bought a little house $48,000.00 on Washington Avenue in ’83. So, I moved from the North End of Boston where I was living in a great cold water flat for $150.00 a month, five rooms, in the North End, where I also love. Anyway, I moved here so I wanted to become involved. The AIDS Support Group was having an open meeting, open to the town, and it was being held in the Unitarian Universalist Church. I think I saw it in the
paper, so I went. Sitting in the audience, I think I was sitting next to Mary Jo Avellar at the time, who I didn’t know, and the board was sitting up at a table. Alice was there, Preston Babbitt, Frankie Girolamo and other people who I can’t remember or didn’t know. Anyway, there was talk of what people could do, volunteerism, and, prior to that, I used to help the Fine Arts Work Center set up their auctions. I used to set up the presentation. I used to help them, that’s the kind of work I used to do; visual installations and decorating. So, I had a little knowledge of auctions, not much, so I thought, “Well maybe we could do an auction for the support Group.” I raised my hand and I proposed the idea and it was shot down. The response that I got was, “We’ve tried yard sales before and they really don’t bring in much, we really need to bring in some money.” So it ended, and after that meeting Frankie G, Frankie Girolamo, who I didn’t know, came over to me and said, “Listen if you want to do it, do it. Don’t listen to them, just go ahead and do it.”
And, because he said that and for whatever reason, I thought, you know what, “I am going to go ahead and try it.” So, the process began to find out how to do it, where to do it, when to do it and how to get stuff to auction off. So that very first year was 1986. A very good friend of mine, James Hanson, who is now dead from HIV, I asked him to create a poster for us. It was the first poster for the auction and he…black and white, and there was a large um, um shape, then it had my name and home number to call me with donations.
I then went to the Fine Arts Works Center and I knew Robyn Watson and Susan Slocumb was then the director. And I said, “I know that this is maybe conflict with your auction but I’m going to try this. Can you help me out?” and Ione Walker, Berta Walker’s mother, who was alive then, who was very involved with the Work Center, when she found out about this, she gave the auction her blessing. She said to those women, “We will help him out with this.” I didn’t know
this until years later, when they told me that. So they gave me all the paperwork, you know, how to label an item when it came in, how to, when it’s auctioned off, what to give the person who bought it, how to record things and they helped me work several of the first auctions. They were there working it.
We needed an auctioneer, Jimmy had a friend Shelley, who was an auctioneer at Christie’s, who used to come and also used to work in Provincetown. She volunteered to be the auctioneer. We needed a space, the Unitarian church gave us the first floor. We needed items, I went around everywhere, word of mouth and people started joining me. Bill Meves, George Libone, Toby Kaplowitz, when she was here, and you know what I don’t remember a lot, a lot of people who helped but it was an incredible response. Artists were incredible, we had a lot of really good stuff. In addition to some great art, Hilda Neily, I need to go and say this, Hilda, who has given from the very first auction and has consistently given every year, one year she even, when her painting… we were doing this upstairs at the church then… one of her paintings went for some large money, and during the auction she went home and she got another painting, another large painting and gave it to us to auction off at that auction, so there were two of her paintings at that auction. This is not to just single her out, just something that came into my mind.
Everyone gave work, everyone that you can think of. So, I think what his name was at that auction, the gay congressman, Gerry Studds was there and I think he bought… there was a heather collection some landscapers had gave, beautiful heather collection, and it went so over what it’s worth was and, I think, people were bidding from outside the windows because people couldn’t get in. People were game, so it was way beyond… I was thinking, we were thinking,
ten, maybe twelve, fourteen thousand hopefully. The first one, we got about $29,000.00, to our amazement. The Support Group was not there, the treasurer, I think Max was the treasurer, was not there. Alice was not there, and the next day, or that night, I called them and they came over and got the… and it was a huge success and we were very happy. So, it became an event, that was not a Support Group event but that we continued for years and years and years until it became….., the Support Group then took it on and it became an event that they had… a development person would run that, a paid person who would run that.
But prior to that I was the auction chairman for twelve years. So, I was the chair for twelve years and most of the original people worked every year on the auction with us. Jimmy Rann, as I said, and we would have someone who was in charge of getting art, someone who was in charge of getting jewelry, gift certificates to restaurants, guest houses, memberships to the gym. We even had, Rhoda Rossmore and her husband, for many years donated their Villa in Puerto Vallarta, two weeks staying there… you just got there on your own. We had trips. It became quite an event and it raised a lot of money and it was fun. It was fun and exciting and eventually it started bringing in over $100,000.00 an auction.
I never figured it out cause I’ve never really known all the amounts but it has to be close to two million by now, over these past twenty-two years that it’s been going. Labor Day weekend was the weekend we started and it turned out to be a great week-end and we continued with that weekend. The site had to move several times because it got larger and larger. We went upstairs at the church and then eventually to town hall. Now the town hall is closed. This last year, I did not attend it, it was out on the wharf.
So, that’s how it began and it was important, the money that come in from that was important
and, at one point… oh and then I became a volunteer. It was either during that or before that. I was in the second volunteer training class that they held, to become a volunteer to work with clients. I think we talked about that at the round table, Irene Rabinowitz, Phyllis Temple, Greg Russo a lot of people were in my group and we worked with men, hands on or not. I became a driver for the van driving to Boston. One year, many years ago, Alice and I talked about dinners, about food, about doing a luncheon or a dinner. So, we came up with the idea of doing a once a week dinner, and I cooked the first dinner. I didn’t know if people would want to come, it was pork roast as I remember, several pork roasts, and it became a weekly event which continues to
this day. This must have happened in the early nineties, late eighties, early nineties. Now, guys
hang around and play cards. People have come and gone from that dinner. It was part of that and another thing that come out of the auction was… early on in the epidemic, as we talked about before, people were trying anything to be able to get better. One of the things that seemed like it had some promise were egg lipids, they were expensive, not everyone could get them, they were not covered and the support group was able to pay for them for certain people… not certain people, for some people, but not every one… they didn’t have the money. So we, the auction committee, thought, “Why don’t we use half of that money, half of the auction money, whatever we make for the auction each year. It’ 11 all go to the Support Group but half of it goes into a fund specifically for, what we termed, non-reimbursable therapies and those could include acupuncture, massage, reindeer antler… you know there were, there were many things that people wanted to try… and we even included therapies that might make someone’s life better, like gardening, doing art. We had to break it down to a weekly amount that was available for those who wanted to participate in the program. So, I brought that idea to the Board, the AIDS Support Group Board, and they rejected the idea. They said they needed the money to run the
organization. So, we the committee then thought, because it was out auction, we raised the money, we thought we would set up an account of our own to do this, but there was one person who did not vote on that on that committee and she was the director and her name is Alice Foley. Alice Foley called me up the next day and said, “Can we have coffee?” and I said, “Sure”. I think it was Little Billy’s Restaurant, it was down the street from where I lived, Billy Forlenza, who was great. We sat there and had coffee and she said, “What is it that you want?” I said, “We kind of explained it at the meeting, we don’t want to handle the money, we want you to have it, we want you to do the bookkeeping, but we would like half of this money from this auction to go into this fund and if you’re not going to do it, we’re going to try to figure out a way of doing it ourselves.” Gratefully, she said, “OK we’ll do it.” and it was a fund that continued… it just ended… it ended maybe three years ago, so it might have continued up to 2005.
In the very beginning, it was large sums of money, it might have been a hundred dollars a month in the beginning but gradually it dwindled down because there were so many clients, people kept moving to Provincetown and it was available to everyone. We had no criteria, no income criteria, we didn’t want to go that route where, if you… to try to figure out who was benefitting and who wouldn’t benefit. It was great, it was a great thing. It helped a lot of people, people relied upon it, sometimes people used it for fireplace wood to heat themselves.
Then, in the eighties when the Support Group decided to join the Upper Cape AIDS organizations and open that up, then the auction wasn’t making enough money to be able to fund the entire Cape. It was really a Provincetown thing and I fought to keep the auction money specifically in Provincetown, but the board opened it up to the rest of the Cape, Falmouth., Hyannis. So, immediately that money went down to like ten dollars a person and then there
wasn’t enough… but it was great thing while it lasted. Now the auction, I think the support group depends upon 100% of it to keep going, to keep running.
I think that’s it… oh, there’s a couple of other things about the auction I need to talk about. First year we had a poster. Jimmy did it, as I said, James Hanson and so, the poster was great, so we decided, every year, us on the committee, to ask a different artist to do the poster and I think you’re going to be able to see all the posters on one of the histories… somewhere. We have each poster framed and hung in one of the rooms at the support group. That was one of the great joys, in choosing an artist, then seeing what they came up with and there were some incredibly beautiful posters and, a saint named Donna Flax, for many, many, many years would print these posters, and in addition to the posters, she would print… that’s when the t-shirt, the AIDS support t-shirt… what’s the word when something becomes a regular thing… whatever, it became a regular thing every year and we would sell hundreds and hundreds and hundreds of these t-shirts and Donna, even during the busy summer season… and the posters were silk screened, a method which takes time and energy, and she did this every year for us, so willingly, so beautifully, it was amazing. So anyway, the posters were great. I even got a chance one year, when I stepped down from being the auction chairperson, the new committee said to me, “We would like for you to do a poster this year.” and I did. It was a great feeling. So yeh, Donna Flax, hopefully you’ll get to speak on one of these. I guess that’s it for the auction.
Jimmy had asked for me to talk about the Long Term Survivors Group. Also way back, sort of when the dinners first started, I was in therapy myself with someone actually, who did one of these interviews, Katina, Katina Rodis and it was so good for me because it helped me do my art again so I thought about doing a group, and at that time it had nothing to do with being a long
term survivor, it had to do with having HIV and what it was like, what living was like back then. That we could get together once a week, with a facilitator and just talk. Alice was on
board with that and the first facilitator was Doreen Devlin. She had been working for the support group and used to hold it at the Council on Aging on Alden St. I’m not going to mention the people who were in it because I don’t know ifl can but were… this one man who were in the original group, there were maybe six or seven of us who were still alive and we would meet once a week and talk. It became an important piece of my life and, I think, a lot of other guys lives. It continued, it continued with different facilitators, Katina Rodis became a facilitator once. Jimmy Rann came on board early on so he and I are probably the two longest in the group, which is now at least eighteen years, going on eighteen years… and it’s come to be known as the Long Term Survivors Group.
It’s usually men who come into our group. We usually limit it to eight people. We pretty much always have a facilitator, we meet on Tuesdays, no Wednesdays, we meet on Wednesdays now every week for an hour and a half. We talk about anything and everything, most of the time it’s not about HIV. It’s about our lives, relationships, what it’s like to live, politics, movies, the economy, everything now. I think it started, I’m really bad with that kind of stuff but either the late eighties or the early nineties, I’m going to say the late eighties, I’m going to say like ’89. I got an AIDS diagnosis in ’88, before that I had been considered HIV positive, back then. I think maybe ’88 or ’89 so it could be twenty years, could be 1990, I don’t know and a lot of people have died and that was really always hard in the group. Sometimes we would hold group at people’s homes, because they couldn’t make it to group any more so we would go to………………………………………………………………………………………………………………… I’m going
to mention Victor because I know he would….. this would be fine with him. A great man named Victor D’Lugin I’m not sure of the last name, it was a funny pronunciation, and we would go to
his house and have group. Sometimes he would come down to the living room, sometimes we would have it around the bed when he couldn’t get out of bed. It continues, as I said, and people have come and gone. We have a really great group right now and this is 2008, with some people who have been in it for quite a while and new ones that come in. Why and how this group started and became what is has become, I’m going to try to… I guess it was personal on my part, I guess it was something that I needed. In general, I am an isolator, I love to be home, or in the studio and I guess I had the need to talk to other people who knew what it was like to be living with this in their body. I guess that’s the genesis in my mind although I had been in some other groups prior and I liked, I love groups, I think everyone should be in some kind of group, whatever you call it, it’s great to talk to other people, like minded people. Not necessarily like minded, even if they’re not like-minded, it’s really… I think it’s a great thing. It was like I knew, one day a week, I was going to part of a fellowship of, a brotherhood of men who really knew what it was like to live with this. I guess for me that was the genesis of it and then we became close, a lot of us became close. Way back then, when it was one of our birthdays, after group, Fat Jack’s was around then, and we would go to Fat Jack’s, we’d all sit there and celebrate, most of the time all of us went, some of the time somebody couldn’t go and we would celebrate birthdays. We would do things at each other’s houses even because we were in this group and we became close and friends. It wasn’t for everyone, people joined and didn’t like it. People would come in and didn’t like being confronted, we would confront one another, and would leave, which was sad. I remember once there was a man, way, way back, and, I don’t know, I said something to him, I asked him a question which he was kind of hesitant to answer. After group, he said to me, “Will you continue doing that to me?” and I know it made him uncomfortable, but on some level he wanted it or liked it and he wanted me to confront him on
things that I had questions about.
Personally, myself, I never went on to get anything, the reason I had an AIDS diagnosis even was because there’s a condition called ITP which stands for Idiopathic Thrombocytopenia and it means bruising for unknown reasons, low platelets and maybe some bruising and my platelets had become very low, very, very low. So we worked on trying to get those up. I did AZT around the clock with the little buzzer that would wake me up during the middle of the night, my body was able to tolerate it. I was able to tolerate those kind of drugs for some reason and it didn’t effect the rest of my immune system, but it did not bring my platelets up. I had bone marrow taps, it could have been lymphoma. We ruled out all the reasons other than it was HIV lowering my blood platelets, but the few platelets that I had, and sometimes they would go down to twenty or forty, the few that I had were very tough, cause I never hemorrhaged, I hardly ever black and blued. Fatigue was a huge part back then but they never caused me to get worse or sicken. I never came down with thrush, I never had pretty much any of the other things that the rest of the guys had, I just kept living. I was in good shape and doing stuff. Franco Palumbo, who was a friend of mine, who had Franco’s Restaurant, I was heavy, heavier, we used to joke because he was heavy and we said, “There would be a book out called: ‘And Some Died Fat”.
You know, because we never lost weight even. So, until the cocktail came along in ’95, the cocktail that I’m on brings my platelets way up to normal, but my teeth broke up and I continue to go on, living and not progressing. Now, of course, had I known that, had I known that back in ’86, of course, I would have stayed in the work force, worked, made money, had more of a career. Had I known that, of course, I wouldn’t have been here. Had I not moved here. I could have gotten ill.
Maybe, living in Provincetown, maybe becoming part of a community, maybe living in a village
with very little stress, other than the daily stress of the HIV and the people around me, but really no other stress, maybe that’s why I am still here. I don’t know the answer but I do know
that stress is a killer for pretty much anyone, especially with HIV. As I said I’m an isolator and I never really joined anything in Boston. You know, I had friends, my close core friends, five or six, that we did things, but I was not a volunteer and I didn’t become part of anything in Boston. For the first time in my life, here in Provincetown, I did all of those things. In addition to the AIDS Support Group, because of HIV, a man named Paul Richards started what was known back then as the healing circle. I think the work “hearts” was in it. And we used to meet at night, once a week, at the Unitarian Church, again, the Unitarian Church was great – still is. We would meet there, people, with and without AIDS, people healthy, very healthy, people not healthy, anyone could go, it was for anyone. We would sit in a circle, talk, sing, do exercises and I got to meet people and I was part of something that I never would have done anywhere else. I met Tim Callas there, who’s become a great friend, who was actually a great, great friend of the auctions, who still 22 years later, he would bring three or four dozed mum pots to the
auction to, number one, arrange them so that the presentation looked good and then at the end we would auction them off, a dozen at a time. He would show up, his truck would show up every year, with the mums.
The auction did become… it was like a ball of putty that so many parts of the community became attached to. It became an event that everyone really looked forward to. People would call up the business guild and the chamber… they wanted to know what date the auction was, to arrange their vacation around the auction. I guess one of the reasons was they got some great deals, There was some great art, great merchandise hardly ever went for its full value, but most of it did very well, some of it over its value. As far as the community, I can’t think of any
segment of it that wasn’t part of it or didn’t participate. Roslyn Garfield and Phyllis Temple joined the auction at the very beginning. They became the recorders, they sat up there, every Labor Day week-end. They gave up any party, going away, any event that they were invited to they gave it up that night, the night of the auction, it was usually a Saturday of that weekend … to record what items sold for and then that would be taken down to the place where people went to pick up their items. I’m trying to think of other people, real estate agents, restaurants… People did look forward to it, it was joyous, number one, it was happy. It made people feel good. It was a result of HIV, it was a good result in a way, I guess, that was a beautiful event. It always looked beautiful and it made people feel good and it was a way for them to contribute money and get something. It was a way that people could come together, in a comforting way, during a cns1s.
You know it was my baby originally and then I had to let go of it. The baby had its own life and it worked. It was a system that knew how to happen, some years it happened better than others. But the Support Group did take it on, as I said, and it’s one of their fund raising events now. It’s different, it’s actually harder for them to get people to work on it and volunteer now. At one point, when people started living longer, the cocktail came around and unfortunately there’s that feeling that AIDS is not that crisis that it used to be. It’s true that people aren’t dying here the way they used to be but it is still a crisis, worldwide now, worldwide.
I’m grateful to have been… it’s love/hate you know… it’s twenty two years and (phone ring)… I don’t know if you just heard the phone ring but that’s Daniel Cleary, one the guys in our group. Anyway the love/hate with living here, I think a lot of people, with or without AIDS who live
here year round, I think, have that need for something more in the winter, another something that you have to leave to get, and it would be great to have another place to go to for three months, with everything different and new and be anonymous. But, it continues to be my home. I have a partner now, which I hadn’t had pretty much most of my life. We’re together now, this January will be seven years. He’s a really, really good, good man. I love him, his name is David.
I’m going to speak of now, it has nothing to do with the auction, but I think it’s an important piece because of the response of Alice Foley and the AIDS Support Group. This is I think 1990 and it was a result of the auction. The auction was being held upstairs at the Unitarian Church and again the two week trip to Mexico came on the block to be auctioned off. A friend of mine, Judy Poor and another friend of mine Kay Baker, at the spur of the moment, Judy said to us, “Let’s bid on this.” so we bid on it, at the spur of the moment, not having planned on it, we bid on the trip and we got it. We then made plans to go, I think it was in November or early December, and we flew to, and we finally got to Puerto Vallarta, Mexico. I had booked and reserved a car from Hertz, Hertz Rent-A-Car, who told me, at that time, we would be getting a normal, regular car with four doors. Anyway, we got there, went to Hertz and there was no such thing for us, no such thing, I think, existed there. It was an old Volkswagen dune buggy with no roof and a bar, I think it had a crash bar, maybe it didn’t even have that. We didn’t want that. “That’s all you get, it’s your choice.” So we took it. Neither Kay nor Judy would drive, so I became the designated driver for us. We made our way half way to the house we were going to stay in, and the car broke down, it stopped. We got in touch with them and eventually they brought another car to us, took the old one away, so we had another car with the same thing, no
roof, no anything, so seatbelts. We made our way to the Villa, the Villa was very lovely on
water, we went into town, had dinner, maybe a night or two. I think it was the third day we were there, we decided to go down the coast and spend and look at the place where Night of the Iguana… the falls that were in that movie, beautiful area, we were told where it was, how to get there. The women used to change, who was going to sit in the front, who was going to sit in the
back, there wasn’t much leg room in the back, so they would switch off who’s turn it was and, of course, I was driving.
And we were waiting outside, Kay Baker, who was supposed to sit in the front next to me came out first from the house, so, while waiting for Judy she said, “I’m just going to jump in the back, so Judy can get in the front.” Judy got in the front, we pulled out of this place, had to go up a hill, had to get onto this highway, small highway, it wasn’t really a highway, it was two lanes with a strip in the middle and it ran along the coast, down. So I started driving. It was a beautiful sunny day and the mountain was to my left and a cliff that went down and the water to my right. There was a guard rail and we were driving, talking, happy going, and ahead of me was a curve in the road, there was a hill, a mountain there. So I kept driving and I saw a car coming from around the curve in our lane, This was a two lane highway, you could either go one direction or the other… in our lane… I assumed he would, whoever it was would get back in their lane so I went closer and closer to the guard rail as I could get, and it was moments, it happened in moments and it was a head on collision, from what I remember, and I was conscious throughout the entire ordeal. The two women were not conscious, Judy was in the front, Kay, as I said, was in the back. I broke my arm and I had a cut but, I was very aware, I guess I was full of adrenaline and couldn’t believe what was happening and my first thing was to check on my friends. Judy was beside me. She had hit either the dashboard or the windshield and she was
bleeding and I got one of the beach towels and put the beach towel where she was bleeding.
Then I went to check on Kay Baker, who was in the back, who was in and out of consciousness, who was on her side, laying on her side and Kay had very long legs As I said there wasn’t much room between the two seats and people kept driving by, they’d slow down and they’d drive by. The people behind us were annoyed because they couldn’t get by. The response to this accident was like something I’ve never experienced or seen in my life… apparently at some point someone called the clinic in Puerto Vallarta and they sent help but the amount of time that occurred between that seemed like an hour, but it was over a half hour at
least. It was a man who was in the other car and he stayed in his car. Eventually a station wagon came, with no life saving equipment, no emergency apparatus, nothing… and there was some cardboard in the back of this… and we all were put into the back of a station wagon and I was holding both their hands. So we’re holding hands, pretty bloody, one of my concerns was my blood, I had cuts here and here but my hands were not bloody, the blood that was on my hands was theirs… my blood was infected. So we got to the clinic in Puerto Vallarta, they separated us immediately. Judy was the one who needed immediate attention, more than Kay and I. They immediately, apparently, took her into a surgery room. They put me, I think, in a wheel chair and took me up to a room and then Kay disappeared, so we were all separated. Time went by, I was sitting in a bed in my room and I knew one of the things I had to let them know was that I had AIDS, I knew that, because there was some blood coming from me and because they needed to know that. I asked for, I wanted to know if there was someone from, if there was an American Consulate in that town. There was a woman and she came over, maybe about a half hour later, and I told her of my position, my condition and I asked her… and I wanted her to find out what was going on. She said she would do that and she assured me that my having HIV would not be
a problem. Now this is 1990. What I recall is that after that really no-one would come in the
room. For my bleeding they would come in briefly and throw them on the bed. They put me in a wheel chair to take me down to get x-rays, for my arm I believe, and while I was sitting waiting for that I was asking anyone I could find that could speak English, what was going on with my friends. Eventually a doctor came over to me and he looked down at me and he said
“Judy, dead.” Not “Judy is dead”, not “your friend has died.” “Judy, dead” and I lost it and then a few minutes later, of course, I asked about Kay, they couldn’t give me any answers about Kay, but that she was alive and she was OK. A few seconds after that happened the consulate woman came to me and told me I was under house arrest. The way it works in Mexico is you’re considered guilty for something immediately, you have to be proven innocent. So, I was under house arrest cause the accident could have been my fault, they said. My friend had just died and I needed to know about Kay. They did take an x-ray and I was bandaged and then they took me to Kay’s room. I wanted to see Kay, just kept saying, I needed to see Kay, I needed to be with Kay. They took me to her room and she was in and out of consciousness and she had damaged her leg very badly. They wanted me to go back to the room that they had put me in and I didn’t want to go back, I wanted to stay on the chair in her room, there was a bench, I just wanted to stay with her. Eventually they forced me to go back to my room. I did. Then the consulate came and told me I was not under house arrest because the man who had drove the car had told the police that he had been working twenty-four hours a day for days in a row without sleep and he had fallen asleep at the wheel and when he was making the turn he had come into our lane.
And he was asleep when that happened. Had I known I could have went into his lane, but I didn’t know that he was asleep. A series of events after that happened, happened for me in my room that, because of my HIV. I found myself out on the street in front of the clinic trying to
make my was back to where we were staying. My clothes were gone, my bags with money, they
were gone, so I made it back to the apartment called the Support Group, my first call was to
the Support Group, for them to let people know, Judy’s family, my family, what had happened. I was never able to get any more information about Kay on the telephone, only that she was OK. We didn’t know what was going on with me internally at that time, if there was something going on as I said I had those low blood platelets and the support group wanted me to get on the next plane and come home. They arranged it, Alice Foley arranged a flight back, which, I think, went to Texas first, it changed somewhere. And people talked to me throughout the night on the telephone to keep me sane because it was a nightmare. So I could have some touch with some kind of reality, people would keep calling back and stay awake they said a car was going to come and get me. And meanwhile when I had gotten back to the little villa that we had stayed in, the caretakers had the safe open, there was a safe that was there with our stuff, the safe was open and they had all our stuff out and looking at it and counting it and going through it. It was surreal, it was like some kind of movie. I made it through their customs. We were on a plane, they had sent a very good friend of mine, they flew her from Boston, my friend Judy, to meet me in Texas. I was in a wheelchair and be with me till I got back. When I got back to Boston, they
had an ambulance waiting at the airport to take me to Beth Israel. I was in Beth Israel for three days, there was no internal bleeding. Meanwhile Kay, who had some injuries to her legs was airlifted to a hospital in Texas and remained there for a month, at least. She had to have pins put into her leg before she came home. And then there was Judy, Judy’s family, getting her home. Judy was a very beloved, very beloved person in Provincetown. So, that was basically the story of Mexico and I guess I wanted to talk about how important it was to have the support group there and in place and Alice to take charge and immediately knew what to do and did it.
Now this other little story, for me, was years later, four or five years later and it involved a friend. I mentioned him before, Franco Palumbo, who also had HIV, who was on a trip in Italy with several friends of his. They were touring different places in Italy and they had gotten down to Palermo in Sicily when Franco took sick. Friends took him to the hospital, the local hospital in Palermo and once they found out that he had HIV, they then sent him immediately to this facility. We didn’t know about any of this yet and didn’t hear about Franco being in there till maybe three days later. It was an old TB facility somewhere in Palermo, old, decrepit, that was never used any more place, where they put anyone with HIV and they put him there. The call came eventually to the support group that’s where he was. They said he had pneumonia and they could not release him. What do we do? His friends had left him and continued with their tour, no-one stayed with him. I spoke some Italian, I am Italian and again Alice said, “We’ve got to get him home. Would you go? Would you go get him and bring him home?” Without hesitation I said, “Of course I would.” And what happened, it actually became for me an opportunity to go back into the lion’s mouth in a way. His experience was not that unsimilar to mine in so far that… how other countries at that time treated people with HIV. How we were treated. I made my way to Palermo and the next morning made my way, I had directions, to the facility he was at, made my way there and we got to it and there were armed guards at the little station out front, like a prison, it was all walled off. I told them I was his brother. I had come to see him. Finally they found this building, all the others were vacant, there was nothing going on in all these old unused, decaying building. We got to the building where he was at. There was nothing on the first floor, just an old stairway, walked up the stairs and as I was getting to the top I could see across the landing something burning. I could see flames, I kept going and it turned out to be a wastepaper basket in an office with people standing around, some in white medical
outfits and some not, burning apparently items that had come in contact with some of the patients there. That was their way of dealing with HIV. The lobby, the hallway, the long hallway was loaded with maybe ten of twelve cabinieri, their police, with rifles on their shoulders, smoking, talking, laughing, they just kept walking up and down the hallway. I made my way into the room, told them who I was, who I was here to see. They took me, as I said there were maybe three or four people there, there was no doctor, took me to the end of this hallway.
As I passed doorways, I could see people sort of in squalor in different rooms. Franco was at the very end. I walked into his room, he was alone in his room. It was a single room, it was filthy, there was no sheets on his bed and he was hallucinating. He sort of knew who I was. All he kept saying was he wanted to go home. He was really unaware. I don’t know why or what it was.
He told me that his rings had been taken off. One of the other people with HIV during the night had got in bed with him and that his rings were gone. He knew that and said, “I want to go home, You’ve got to get me home.” I said, “OK”, so I went back to that office and said I need to be able to have him released so that I can take him home on the next available flight. It was the week-end and they said “No, you have to speak to the doctor. Only the doctor can release him.” “Can we get in touch with him? Can we call him?”
I had to wait, so I would go back to the hotel and go back to Franco every day and bring him food. He loved to eat, different things that he wanted, pizzas, paninis, coca colas. I tried to clean the room up a little bit. Apparently most of the other people there were, what they said, were criminals, maybe people who lived outside of the law, maybe drug addicts, maybe street walkers. Those were the people pretty much, I saw some of them and talked to them, a few drag queens.
It was very, very sad to see that be there. So, finally I did speak to the doctor. He was a nice
guy. I spoke to him in English and Italian and he said Franco had pneumonia, he was sure of it and that he could not be released. I asked him what tests they had done to make him come to that conclusion. And, meanwhile I kept talking with Alice on the phone from the hotel, going over everything. It was determined by people here in Provincetown, in the Support Group and myself, that he may not have had pneumonia, from what it sounded like and from the tests that they did and that we needed to get him home. The doctor would not release him. I was as nice as I could be to him in trying to explain everything and I said that I would take every precaution, that we could treat him as someone who had just had intense chemotherapy. I had brought masks with me. They had given me masks, the Support Group, and I had some masks.
Eventually he said yes he would sign him off. I was there maybe three of four days. We booked a flight back. Franco had to come and stay at the hotel with me, we got him in the car, put masks on him, and kept making… we were asked questions as we would go through customs. “Why? What is this? What’s going on?” and I said, “He’s very susceptible to other people’s infections. We need to try to keep him away; if we can sit in the back of a plane, wherever we could be most isolated.” We had two planes to take, one to Rome and one to Italy and he was not cooperating at all… Franco, he just wasn’t, he just kept trying to take the mask off.
We got Franco home from Italy eventually, to Logan Airport. Yet again we had an ambulance waiting for him, took him to the hospital, turned out he did not have pneumonia, so no-one was at risk, no-one on the plane. And he pulled through it. Franco maybe lasted another year, year and a half after that incident and then he died. Franco had lived here in Provincetown, lived here year round, he had a restaurant, he had several restaurants, Franco’s Hideaway, he had a restaurant where the Mews was. He was a big, big part of the town. He is the person that, in another video, because he became blind at one point, in one of these other tapes Katina and
Janice were talking about, who drove his little Miata, blind, through town. They talked about someone, I’m naming him. It was Franco. That’s who it was.
(Catherine Russo, director,” So some people in Provincetown really took care of whoever was in their circle.”)
Absolutely, probably like….I don’t know of any other place that did. I remember way back then, people kept moving here with this because they heard about the services, the treatment and mainly the non-fear, eventually, in the very beginning their was a little fear with the white gloves and, “How do you get this?” But once it was clear, blood to blood, every segment, every part of the community was on board with this. And so it was very safe, healthy, an advanced place to be with HIV, cutting edge; partly because of Lenny Alberts, Doctor Alberts who was up on every new possibility, on his own time, doing his own training. And then our access, because of the van, our access to the best hospitals in Boston, the Deaconess, Mass General, Beth Israel, so people were able to live here in a comforting community, with a lot of love and still experience
to top quality care.
Jim Rann December 2008
Hello, my name is Jim Rann. I’m 65 years old, I moved to Provincetown in 1972 on a yearround
basis. It’s a great town. I love this town. It’s been really good to me. Some of the history
that I remember about Provincetown and how it takes care of itself as far as health wise goes …..
I remember when I first came to town it was an era of peace, love and tie dye, free love, there
was a lot of sex going on, a lot of anonymous sex between hippies, so therefore we started
having STDs, venereal disease and things happened. Everything was about being free so they
started a free clinic in Provincetown called the Drop-In Center. It was located on Bradford St.
near Town Hall and when something would happen we would go to the Drop-In Center and they
would take you in.
They didn’t record things so there was no trouble for you as far as government goes, stuff like
that. The doctors were Doug Heebler and Frank Zampielo, the nurse was Alice Foley and they
took care of us. That was in the seventies. In the eighties, HIV started happening and my first
recollection was hearing about this really handsome guy that worked at one of the restaurants. I
did not know him but I knew who he was. I admired his looks, you know, very attractive, and he
started losing a lot of weight and then somebody said, “He left town, to go home to live with his
Then I heard, not too long after that, that he died. Also, at that time, we started getting news of
some kind of gay related infection, GRID. I would buy the New York Native, it’s a newspaper,
sort of like the Village Voice, but in a gay version, and they would have lots of news about what
was going on in San Francisco, New York, Los Angeles – people getting pneumonia and dying;
eleven people died in the last six months – that kind of stuff.
So, I remember, standing in the Atlantic House alley after the bar closes, it was a big local
dance bar, standing in the alley, right off Commercial Street and talking with other guys and
saying, “What’s going on? What’s happening here? These people are getting sick.” You know
there was a fear that was coming around, a wonderment. That was my first things with HIV,
then it started happening. It got a name, GRID, as I said and more people started getting sick in
Provincetown, more people left town. The first person that I heard about that was a relatively
well known figure in town, he was a bartender at the Atlantic House, it was a little bar, which
was sort of a hangout for everybody, and he started having problems and I heard about him
through my friend, Glen Lane, who worked for me.
I had a hair salon, Waves and Glen worked for me and he was a good friend of this guy, Billy.
He would take Billy to Boston for doctor’s appointments and tell me how he was worried about
Billy and Billy didn’t want his bosses to know. He had to keep this secret because, if his bosses
found out that he was sick, they would fire him and he needed the money and there was no help
for him really.
Glen went to Boston and took a training at the AIDS Action Committee, which had started but
had a different name at that point, in Boston, …. how to take care of people. Billy got really sick
and then the town found out. Alice Foley, Preston Babbitt, Rogers Baker, Alan Wagg, people
who started the AIDS Support Group, took care of Billy and Billy died. I remember them having
a hearing, they were all over at Billy’s house waiting, cause they knew it was going to happen,
that kind of a thing, a death watch.
When he died, his family showed up, and, of course, Billy had said, “I’m rich, I’m doing
fabulously, no problem whatsoever.” They expected to find money here and a great wealth that
they could take back, though they had rejected him because he’d been gay. It was tragic really.
They cleaned the house out, left town, that was it. “DO with him what you want.”
So that was the first, that I know of, first actual case that the AIDS Support Group took care
of. From that, they realized that we had to do something, Provincetown had to do something.
As a group, they hired Doreen Devlin as an administrator, Alice was the head of the
organization, and they started having “buddy” trainings. When I heard about the first “buddy”
training, I did volunteer to become a buddy along with my then partner/roommate Jeffrey
Maienza, we went through the buddy training. It was a twelve week thing, it came from the
Shanti project in San Francisco, videos, exercises, all kinds of things to teach us how to help
people who were ill. Before the training was over, I ended up getting a buddy, a young man,
Kevin George. He was very young. He was in his twenties and he was a karate kid, did Tai Chi
and just very bubbly, vibrant, high, high energy. We used to go, before he was my buddy, I
would see him dancing at the A-House, he was just very lively, anyway he needed care and we
tried to help him. One of the things that he started … he ended up having to leave town because
he thought that he could get better care in Boston, but just before he left, when this group was
starting to happen, he suggested that we have communal dinners once a week for the people who
had AIDS in town.
So that was the start of one of the services that still continues in Provincetown through the AIDS
Support Group of Cape Cod. Kevin eventually died and it struck the community because he had
a lot of young friends who were also into Tai Chi, that he took classes with, he taught them.
Some of the kids that were still in high school knew him, young adults, straight, were his friends.
That was just the beginning of the things that were happening.
Next person was my best friend at the time, Don Sterton. He was in the training with me.
The last, maybe two of three weeks before we finished the training, Don disappeared for a
weekend, came home, told myself and some other friends that the doctors had told him that he
shouldn’t be left alone. That was because he had developed AIDS dementia. So, we set up a
support group to take care of Don. We started out with the AIDS Support Group but ended up
having to sort of separate ourselves a little bit because he needed round the clock care. There was
a group of thirty of us that took care of him, cooked meals, helped him shower, bought his
groceries, stayed overnight. It was a gradual thing, it happened very fast but different levels of
losing his memory would happen and being able to control himself.
I remember a couple of times the overnight person would wake up, because they had fallen
asleep while they were with him, and Don would be out of the house. They would go out
looking for him and someone would say, “We saw a guy sitting in his underwear in front of Ciro
and Sal’s sitting on the fence.” Or a fisherman had found Don out on the wharf. So everybody,
not everybody, but people knew who he was because of this and knew this was happening. I
remember towards the end he had become very feeble, lost a lot of weight, couldn’t remember
what he ate. He was a vegetarian and we would go into a restaurant for breakfast and he would
pick up the little cream pitcher and drink the cream because he thought that’s what he was
supposed to do. He would order a hamburger, when he didn’t eat meat, to eat.
Very strange stuff was happening, in a way it was comical, but we could see that our really
intelligent, wonderful best friend was fading away from us. He ended up having to go the
Shattuck Hospital in Boston because we could not take care of him in the middle of it all, in July
and August, when people just couldn’t be there. But just before that, I remember that I was over
there and he had to take a shower because he had messed himself and taking him into the shower
and having to watch to make sure that he didn’t turn only the hot water on and scald himself
because he wouldn’t remember; just having to be that close to him to make sure that everything
was alright. It was very hard, very hard, and when he died, it left a huge, huge hole in my life,
because I spent vacations with him and movies with him and all that stuff.
Another person who got sick around that time was an ex-boyfriend of mine, lover of mine,
Stephen Clover. Stephen had, when he found out he was sick, he had decided to go to ….. he had
a very great antique jewelry store in town, Provincetown and I worked for him, very wonderful
store, accent jewelry and antiques but when he realized what was going on, he decided he wanted
to go to seminary school, because he had always dreamed of becoming a minister. He left town
and moved to California. First he went to Boston, Harvard Divinity and from there he went to
San Francisco, Berkeley. He came back in the summertime, I have an image of him and my
friend Don, in the summertime, both laying in hammocks next to each other in Don’s yard and
thinking, “These are the two most important people in my life.” and Stephen died when he was
out in California. He wanted to buried in Provincetown, he wanted his ashes in Provincetown
and some people from the seminary brought his ashes to Provincetown and we had a memorial
service. The memorial service was about three hundred people. He brought in a ….. he had set
this all up ….. he brought in a black gospel choir from Boston, which was the church that he had
gone to when he was at Harvard Divinity School.. This black gospel choir showed up. They
came on a bus. They were all dressed in white. All dressed up in white, beautiful, beautiful
clothing and I was executor of his will along with Roslyn Garfield, a lawyer in town and Berta
Walker, an art person in town, a gallery owner and we paid for the bus.
You know, he had set this all up with his estate, but anyway , this gospel choir singing in there
and there were four different ministers there speaking. Kim Harvey, the present minister of the
…. churches in Boston, a couple from out west, San Francisco, all spoke, it was just a happening
event, it was unbelievable wonderful and at the same time so horrible, because we were losing
this pillar of our community. We took his ashes, after the funeral, after we had sent the choir
over to the Lobster Pot for all of them to have dinner before they drove back on their bus. We
took his ashes out to Herring Cove, in the gay side of the beach, but in the dunes, there was a
little valley, Pasquale and myself and a few others ended up naming it the Valley of the Dolls.
And Stephen was there, his ex-wife was there, his daughter was there. His ex-wife ended up,
when they divorced, becoming a lesbian, Harmony Hammond. She’s a rather well known
lesbian artist. The people from the West Coast, we went out and formed a circle, his daughter
Tanya and we let go of his ashes there. It was very touching and difficult.
Then a man that I knew, a guy who had moved to Provincetown, more or less with me from
Michigan, Paul Richards. He’d been a hairdresser working for me, he opened up his own
business. When he found out he was positive he decided to travel and he ended up somehow or
other running into Louise Hay and hearing all the New Age stuff about ”If you do the right
things you won’t get sick.” Of course, he got sick anyway, but, I remember, before he took his
long trip, he had found a lesion on his leg. What he did, was go to a surgeon and have it
removed and went on this vacation, came back.
He got sick and, funny thing, where he really got sick and they brought him back from, he had
stopped in Death Valley, California. Anyway, he came back to town and another one of those
huge memorial services happened. He had the slide show, music that he had picked out, tapes
that he had made of his favorite music. Before he died, he started a group called “Hearts”,
healing arts type of thing. People would come together and at the Unitarian Church
Meetinghouse and they would have speakers, he would have exercises, where you would pick a
person next to you and each give each other back rubs, or massage their feet and they would do
yours or you could do meditations. That was a weekly thing that happened and it ended up being
like forty or fifty people, all sitting on mats on the floor at the Unitarian Church and thinking
positive thoughts, trying to deal with this mourning. The town, Provincetown came out, the
people that were there were not necessarily all the gay people, a lot of straight women, a lot of
people who worked in restaurants with other people, carpenters that worked on people’s houses.
Unbelievable. The amount of lesbian participation in this was also unbelievable.
Because before that there were two communities in Provincetown, there were the lesbians and
the gay guys and we, you know, got along but there wasn’t the kinship that we have today in
Provincetown between those groups.
After Paul, what happened ……. to me, specifically …… well I should go back a little bit talk
about the AIDS Support Group happening. At that point it became more of an organization. We
started raising money to help the guys that were getting sick and the few women, I think there
were two women. The first woman I remember was Liz Wolf. She was tall, red-head, lesbian,
gorgeous, big bushy head of red hair, very strong, very nice and very sick. She wasn’t too sick
when she got here but she died within, I’d say, six to eight months, of the time she lived in
Provincetown. The AIDS Support Group was there though and that was being developed.
Preston Babbitt was the president, Rogers Baker was the treasurer, Alan Wagg was a member,
Alice Foley was the director of the Support Group at that point and Scott Penn, who was the
director of Outer Cape Health was also involved in leadership and they took care of people. The
first big fund raiser that I can remember was the auction and that was Pasquale Natale, a good
friend, and he said, “Let’s have an auction.’’ We went around town and collected art from
people, merchandise and gift certificates and had this huge auction and made a lot of money. I
don’t remember the first auction what it was but it was big for that time. The auctions ended up
running anywhere’s from $60,000.00 to $120,000.00 a year. \
We also had one, we needed a car, or a vehicle to take people to Boston and we had this idea,
Jeffrey, myself and a couple of other had an idea that we would have a dinner, and we would
have music, we would have white table cloths. It would be formal dinner and it was called “The
Chefs Night” before “The Chefs Night Out’’ happened. It was before that and it was at the
Mews, the first one. We had Linda Gerard there singing and someone else playing piano. We
gave everyone, when they walked in the door, everyone got a long stem red rose. It was kind of
an event to raise money and I think we raised maybe four or five thousand dollars. We still
needed more money and I remember, Pat Shultz, a realtor in town, called up one the oil
companies and said, “We need money. You’ve been heating these people’s houses for years. We
need money. Will you give us some money?” and they said, “We’ll give you a thousand
dollars.” Then she called the other oil company and said, “They’re giving us a lot of money.
What will you give us?” So she sort of got a competition going between these two oil companies
to make more money. So we ended up with a van and people could be driven to Boston. By this
time now we had maybe fifty clients. It had become more of an organization, it has always been
grassroots and we tried to keep it that way but now it was just too big to have that grassroots
feeling as well.
Around that time, also, we started the PWA Coalition. The story for that was….one of the
guys that lived in town, an artist, Keith Donahue, started getting sick. There really wasn’t
anything available except AZT at that point for people and we knew that was a toxic drug and, if
you could avoid it, you avoided it. A friend of his, a woman friend, Rita Spetcher, lived in town.
She told Keith about her brother who worked for the Gay Men’s Health Crisis in New York and
who was a doctor. She called and said, “What should we do?” He said, “Come to New York and
visit this particular doctor.”, who was the most prominent AIDS doctor, at that point …. AIDS
doctor … and, so John, his partner, John Perry Ryan and he drove to New York, went to the
doctor’s office, said, “We need help.”, sat in the office all day long. At the end of the day, about
seven or eight o’clock that night, the doctor took his last patient, invited them into the room and
said to them, “You need aerosolized Pentamidine. You need to make that happen.” He gave
them the machines to do it with, the thing to make it aerosol and some of the drugs and sent them
back and said, “YOU need to start a PWA Coalition and start being active about making things
happen for these people.” So that was the beginning of the PWA Coalition.
At that time, it wasn’t approved by the state to pay for it, so Outer Cape Health was doing it
on the sly, not letting anybody know because it was wasn’t legal yet and we needed to have it be
legal, because we thought that everybody should be on it because it was a preventative measure.
So, the PWA Coalition decided to …. ACT UP was starting around that time too ….. the PWA
Coalition decided to have a “die in”. I wasn’t able to do that but about twenty people went out
to Outer Cape Health and had a “die in”. They all laid in the parking lot on the ground. We
called the press, the Boston Globe, the local papers, the Cape Cod Times, and it got publicized
and got to be big news. By doing that, what we did was sort of rush the state to say, “We
don’t want anymore of this stuff going on.” So they ended approving that aerosolized
The PWA Coalition was more about empowerment, self-empowerment and the AIDS Support
Group was about taking care of people while they died. We tried to keep people alive,
everybody we trying to keep people alive but there was a difference in sort of the way the disease
was being treated. There was a little conflict between the two groups because of that.
We also started an art, actually it was my idea, the Coalition Arts Project, where we started
having a second auction. It was to raise money for PWA to have money for art. To buy typing
paper for a writer, to pay for art supplies, to pay for classes, to buy music, anything to get the
creative thoughts going in people’s minds because we felt that was a way of helping people stay
We had a newsletter. PWA Coalition newsletter ended up being sent all over the country, all
over the world actually. We had a mailing list of a few hundred people, West Coast, East Coast,
South, Europe. Even investigated things like herbal treatments, that’s the only thing I can think
of specifically, or information about the available drug treatments. My partner Jeffrey, at that
point, started having problems. He had been going to Tufts in Boston to get dental work done.
He had an appointment. We went in there and his gums were bleeding, I guess. They did a blood
test and he found out he was HIV positive. This was a couple of days before we were leaving for
We were going down to Florida because we really needed to get away, you know, we’d gone
through Don, we’d gone through another good friend, Chucky Vetter You know, all these
people dying around us…. Paul, so we were going on this vacation and Jeffrey found out he was
positive. We went to Florida, we spent ten days down there, we came back and when we got
back, Jeffrey told me. He didn’t want me to know that he was sick and ruin my vacation.
Jeffrey took about a ye ar…. almost two years before he died. In that time I…we were living
together …. in the beginning, it was not a problem, then he started becoming incontinent, had to
wear diapers. This was a guy who was handsome, half Italian, half Irish, very outgoing, just a
wonderful person I really loved. He started getting weak. The drugs didn’t seem to be helping
him, this was before the drugs did help people, he started getting weak, became incontinent,
losing weight, I was buying him diapers, I was trying to fix meals that he would eat, trying to fix
something that wouldn’t give him diarrhea. It was a very, very difficult thing.
I was working. We lived above my business, the salon, so in between appointments, I would run
upstairs to check on him. He worked as long as he could, was as mobile as he could be for as
long as he could be, but at one point he ended up being home, in his bathrobe, in his pajamas, on
the couch. I would come upstairs between appointments to check on him. We ended up having
a person fiom the AIDS Support Group come in, Beau Babineau was his name, he was our home
health aide he would come in and clean and wash dishes for us some of the time so that I could
actually spend time with Jeffrey because I ended up doing a lot of stuff that took me away from
him and that was one of the things that the AIDS Support Group was great about doing. At this
point, the Support Group had a lot of volunteers. We had maybe fifty, a hundred volunteers
doing things in all different ways to take care of people in town. So, Jeffrey would get a check, a
monthly check. At the beginning, I think the checks were like one hundred dollars a month,
which would help pay for co-pays. Anything somebody needed who was HIV positive, plus
the Arts check that we would get also.
We took care of people in Provincetown. The dinners were going full force at that time.
Once a week, you had a home cooked wonderful meal, cooked for fifty people and it would be
the churches. Saint Mary’s of the Harbor, St Peter’s, the catholic church was against all of the
things that were happening for people, but yet they were there, the church ladies, the Unitarian
Church. They showed up, they cooked the meal, they made desserts, they made quilts, theymade
crocheted afghans. Those things were just there for the people who were sick ….. and the
rides to Boston. The van at that point was going maybe four times a week, as many as six people
in the van, with the driver, all different appointments, all different hospitals, all different doctors.
It was hard work and it was happening, all volunteer.
Going back to the original board of the support group, Preston Babbitt became ill and his
partner Rogers became ill. They both eventually passed away. I remember Rogers, he was a big
money guy, he was the accountant,. . . or the treasurer, and he knew all the money stuff. He
figured out ways to save some of that money to buy the building where the AIDS Support Group
is now, not the whole building, but the condo there and we ended up buying three of the condos
in that building to make room for the Support group. But Rogers, towards his end, after he’d
done all this wonderful stuff and he started getting sick, I remember seeing him in his wheel
chair, somebody pushing him up and down Commercial Street, middle of summer, just having a
good time I guess but he knew that he was going.
He was so thin, he went down to ninety pounds, something like that.
What came after that … around this time the PWA Coalition was going, we were doing the
newsletters, the AIDS Support Group was active …. I ended up finding out I was HIV positive in
- Before that I had done all the volunteer stuff, I done the training, you know, I hadn’t been
tested. I was thinking, you know, maybe I’m going to get away with this. The test was available,
you’re supposed to take a test yearly, so I went in and got a test. In 1989 I became positive. I’m
sure that, I had been practicing safe sex for a couple of years before that . I’m sure that my
infection probably happened in the early eighties. Anyway, I found out I was positive and you
would go to Outer Cape Health and you would have the test and then they would tell you to
come back two weeks later at a certain time. So, I would come back to weeks later. I happened
to come in, my appointment was at 1 : 15. I had a lunch break from one o’clock until three fifteen
from my business, my salon didn’t have customers, so I came into the place, I sat down, I gave
the woman my number and she said to me, “Are you going to be alright with the results of this?”
I said, “Oh yeah, I’m fine, I’m really OK.” and she read the thing. She said, “You’re positive.”
Wow, I was positive, I thought I was going to be OK. So I left. She said, “Arc you going to
be alright? Do you want to talk?” I said, “No, I’m OK.” I went home, my brain was going like
crazy, of course. I went to my house, I had my lunch, I went into the living room, I picked up
the phone, I called my sisters, both of them, said, “I’m HIV positive and I’m OK, don’t worry
about it, I’ll be alright.” I decided immediately that I would start telling my customers. You
know, I’d been involved in the PWA Coalition and our motto was “Action equals life” basically,
and also in ACT UP which was “Silence equals death”. I knew that if I hid that, it would not be
good for my immune system, so I started telling my clients.
I had clients from all over the town, all over Wellfleet, Truro, people coming in from Boston,
a lot of clients, I was busy all the time, steadily booked. These would be Portuguese housewives,
carpenters, artists, Writers and business people, they were all people I would see every five or six
weeks, people had regular appointments with me, musicians. I started telling them. If they
would say, “ How are you doing or what’s going on with you?” Then I would say, “I’m HIV
positive, I’m doing Ok, things are great.” I just went on with my life.
At that point I ended up becoming, soon after that, the PWA Coalition needed a president,
the person who had done it before was ready to step down and I became president of the PWA
Coalition. It was called Provincetown Positive and that was the name of our newsletter too. I
became president of that, I had gone through volunteer training, but I wasn’t an active volunteer
with AIDS Support Group at that point, but I became a client of the support group.
Becoming a client, I was asked if I wanted to join a therapy group, a long time survivors group
that met once a week, Wednesday afternoons, 11:30 – 1:OO. I said, “Yes.” And became friends
with, I was already friends with, but closer to Pasquale Natale. There were about eight of us in
the room. Terry Salvagio, Greg Tice, Mark Bulman and we became sort of the “squeaky wheel”
at the AIDS Support Group. At that point things were happening. There was a conflict going
on, somewhat, with the director of the AIDS Support Group and some of the clients. Other
clients would tell us that they were being played favorite or not being taken care of when
someone else was, you know those conflicts were happening, and complaints. It does happen in
any organization that’s all volunteer like that. There was a conflict so we ended up causing a big
fuss and Alice got mad at us. She wouldn’t … we asked her to make some changes, she would not
do this in a way that things were happening there that we thought were better for the
She had survivors, not survivors, ‘Founder’s Syndrome’ is what they call it. “ I’ll take care of
this, don’t dare to let anyone else change something.” Anyway, it was too bad because the
conflict was there. This about the time we were getting ready, the Foley House was being built.
That was happening and we were involved somewhat in that. Pasquale did the choice of colors,
of furniture, we went to different furniture places and had them donate furniture for the house to
make it beautiful. The Board was resistant to our suggestions because they were Alice’s Board.
She’d appointed the Boards, the didn’t have sufficient PWA membership on the Board, the State
required this. I had asked her, I said, “ I would like to be on the Board. I think I would be a
good Board member.”
“No, no, I don’t want you. You’re too much of a rebel.” Alice ended up resigning. That was
too bad but, at that point, then the Board became more client oriented, more consumer oriented.
The Board was taken over, a new Board basically, some of the old Board members stayed,
Maggie Bartlett was specifically one, Greg Russo became the new Board president. He stayed
on the Board for a couple of years and we reformed the Board. You know, made some changes
to running more of the way the Board is now. We got a new director, Len Stewart was the first
director we hired. He was a case manager before that. We hired him, he did a great job in the
transition and then he left.
It ended up changing directors often, it seemed like a director would last three or four years and
then they’d move on. I was on that Board, the Board of Director’s, as a client at that point. I
stayed on the Board for six years. I had to go off for a year, because they had term limits, and
then I went back on for another six years. I became Board President in the second set of years, I
think, and had that job for a couple of years. Big changes were happening. The State was
coming in. Things were happening ……. the protease inhibitors started happening, people were
living longer, people were staying healthier. There were changes in the way HIV was being
(C: When you found out you were positive, did your relationships change in the community
when you started telling everybody?)
I don’t think so, I think there were some people who may have an idea to stay away fiom me
a little bit because they didn’t want to be hurt, they didn’t want to have me be their friend, then
have to deal with me being sick. I think that was a little bit, but not very much, hardly any of it.
So, I continued to work. I worked until three years ago at sixty-two when I retired. I didn’t want
to go on disability, I could have possibly. In the beginning, I couldn’t have because I didn’t have
the problems, I went on the drug called Peptide T in the very beginning which I took that fiom
the Fenway Health Center and that was a national testing thing that they were doing. I was
patient #2 1, JR2 1 was my patient number and monthly I would get a physical and I would get
my supply of Peptide T. It was a nasal spray and three times a day you would spray this nasal
spray into your nose. The idea was, it was a precursor to the protease inhibitors, it was an
inhibitor. It would supposed to attach itself to the cells, so that HIV couldn’t get in. I stayed on
that for five years.
Through that ACT-UP had to become involved in it because towards the end of the five years,
when the trials were over, there was rumblings that we were going to stop getting the drug. A lot
of us felt it was helping us and so we, through ACT-UP formed the PWA Users Coalition and we
talked to the state about this, the FDA about this to try to make sure that we could still be able
to get the drug, with a guarantee. We ended up getting the guarantee that we would be able to
get the drug as long as we wanted to. So that was sort of, becoming more involved in state
government and going away from how the town reacted to me.
About 19 …… let’s see, thirteen years ago ….. 1995, I met my partner, husband now, legalized
marriage ….. met my husband, Peter and we were great together. I knew this was going to be the
one. Jeffrey had died, I had been alone for two years. By chance, I just met Peter, he had just
moved to town. So, we were together and I said, “Well, I’ve got this money, I’m not going to
live that long, and I’m going to go on vacation with Peter. Take him to Europe.” The two of us
went on a trip, London, Paris, Amsterdam two weeks. Before leaving, I had complained in my
group that I had started getting headaches. I said, “What shall I do about this? I’m getting these
“Go on vacation. Go. You deserve to go. Go on vacation.”
So Peter and I left for Europe. We got over to Europe, the headaches got worse. I ended up
taking probably as many as twenty aspirins a day, Advil, Tylenol, aspirin all three of those all the
time and still having the headaches. Going through the vacation and when we came home, I was
really sick with the headaches. They were really bad. I immediately, the next day, after we
arrived home, I went in to Outer Cape Health and saw Lenny Alberts, my doctor, who at this
point was one of the leading HIV specialists in the country, and told him about the headaches.
He said, “Get in the car. Drive to Boston, go the Emergency Room and wait until they take care
of you.” He didn’t tell me what was wrong he said, “You have to do this. This is very
important.” I went home, told my partner and the next morning I got in my car….I drove myself
to Boston. I went to Beth Israel Hospital. They did a spinal tap. I had cryptochoccal spinal
meningitis which is a fungus which grows in your spine and goes into your brain and causes
swelling. Your brain swells and you die …. meningitis. I had to go on a very toxic drug called
amphortericin. I had to stop working for about six weeks, while I was one that drug. I lost
weight. Going up until that point I’d gotten from 150 pounds down to 121 pounds. I lost thirty
pounds. At that point, people could see that I had AIDS. I was starting to get the facial wasting
and becoming weaker. I finished the treatment of the amphortericin, went back to work, at that
point I did start losing a few clients because they were afraid. Luckily a few years later protease
inhibitors came along and I got on the drugs. I was one of the lucky ones.
I’m still living in Provincetown. I’m still a person in Provincetown who people see daily or
often at art show, at movies, at plays, shopping in the grocery store and you can see that I have
facial wasting and, you know, I have that appearance of someone who has AIDS, possibly. I’m
just one of the people in town and people in Provincetown see that. It’s become a regular thing
here for people to know that this is part of our town. We have perhaps the highest per capita, for
a small town, amount of people with HIV in the country and we are treated just like everybody
For me the drugs are working. I ended up being able to stay, go back to work and stay working
until I reached 62 and I could start collecting Social Security as just a senior citizen rather than
going on disability. I had to quit, I couldn’t go on at 62 though, my legs weren’t holding up. I
just wasn’t doing that well and all of that time, I used the AIDS Support Group; I used that
therapy group that I went to; I helped work on the dinners; I worked on the auctions, along with
everybody else; the Swim for Life. I forgot to mention that. That happened way back. I
remember the first Swim for Life. I had a friend who I had taken care of with AIDS, Chucky
Vetter. He was a local character. He worked at Spiritus as the clean-up person there.
He’d done so many drugs and so much alcohol that he was a little bit on the wet brain side, but
still charming and wonderful and sweet and in and out of that craziness. He had been a
boyfriend of mine a long, long time ago in the seventies. He’d moved back to town and I ended
up being one of his caretakers. The first Swim for Life he ended up getting into this gold lame
bathing suit, this skinny little guy, with a long wig and showing up there as a cheerleader,
mermaid, whatever he could be, you know. That first Swim for Life there were probably thirty,
forty swimmers. Now I work on the registration for the Swim for Life and this year there were a
hundred and twenty swimmers …., three hundred and twenty swimmers, excuse me …. we’re going
to end up with four hundred and they swim … . w take them out to the breakwater and they swim
back to the boat slip beach. They have a huge brunch. All the restaurants give, all the senior
citizen ladies are handing out pizza to the guys. We have swimming teams come from Andover,
this year there were over twenty young girls that were probably anywhere from age fourteen to
seventeen. They come, they have matching bathing caps. We give them a new one but they
have the special outfits they wear, they’re a team, they raise thousands of dollars. We have one
guy who’s in his late eighties and he only has one leg, and he swims, along with his son, and
along with his grandson, every year they come. Provincetown takes care of itself. That’s what
you find here. This is the best place.
Another thing you have to remember, I think I sort of mentioned it earlier, the State of
Massachusetts has the best care of any state. The State of Massachusetts comes through for
people. If you’re going to be sick with HIV, this is the place where you are going to get the
most service, the best care. The teaching hospitals in Boston, the Outer Cape Health Services,
which is a fantastic organization, still grass roots in a way because we know the nurses there, we
know the aides, we know the doctors. That’s there. The Town Hall, the town government
helps people. It just the right place to be.
I’m doing well, the drugs are working for me. I still take twenty pills in the morning, then I
take during the day about another eight pills, I think, twenty eight pills a day I end up having to
take. A few of them are vitamins. I take Norvir, Truvada, Rey-taz, Diflucan to prevent the
meningitis could come back, Lipitor because the drugs cause you to have fat problems,
Trazodone, Elavil. These are pretty strong drugs that I take and they keep me alive. Along
with…. I exercise. I stay active in the town. I do the things that the PWA Coalition taught us
about self-empowerment and ACT UP taught us about speaking out, and the AIDS support group
taught about care. All those things make for a lifetime, for me. I guess that’s mostly what I want
to talk about. This is a very special place to be.
AIDS group finds new director from within its midst
K.C. MYERS STAFF WRITER
Jim Pipilas will take over the helm of the Provincetown-based support group.
PROVINCETOWN – The Cape’s largest and oldest AIDS organization has a new director.
Jim Pipilas, 37, the Provincetown AIDS Support Group’s development director for the past two years, begins work as director Jan 1. He will manage the group’s $1.2 million budget, which is 75 percent publicly funded and 25 percent privately funded.
The support group has 250 clients in Provincetown. It is also the parent agency for the other two AIDS service groups on the Cape, the Upper Cape AIDS Network in Falmouth and Cape AIDS Research Exchange in Yarmouth.
Pipilas has a master’s degree in public administration from the Suffolk University Graduate School of Management.
Before moving to Provincetown with his partner, Ted Malone, he was development director of Ga Lesbian Advocates and Defenders, or GLAD, and development director of United Cerebral Palsy of Massachusetts.
Outgoing Provincetown AIDS Support Group director Len Stewart announced his resignation this summer, but stayed on until a new leader was hired.
Stewart said a nationwide search found the best man in Provincetown.
“Jim has been a leader in helping the organization look toward the future ever since he first joined us two years ago,” Stewart said.
The Provincetown AIDS Support Group was founded in 1983. For many years it was run by one of the founders, Alice Foley, with just a handful of volunteers. Today it has more clients than ever, and three full-time case managers, as well as administrative staff.
Pipilas faces several challenges as director. Due to medical advances, AIDS patients live longer and have increased energy that allow many to return to work.
But fewer deaths do not lessen the need for help in coping with a chronic illness. Providing food that complements the medication is important to clients’ long-term health, Pipilas said. They may need training to go back to work. They also need help with the public benefits offered through Social Securit disability insurance.
This all gets more complicated during a time when many AIDS patients feel and appear healthy, but the drug therapy success is not guaranteed long-term.
Although there has so far been no effect on the Cape, nationwide AIDS service groups have seen a drop in public and private funds because of publicity about the new drug therapy, he said.
“Funding is a big issue. AIDS is not over, and we need to get that message out,” Pipilas said.
Pipilas would not state his salary, he said, because details in the contract have not been finalized.
July 7, 1998
Leader of AIDS group to step down
K.C. MYERS STAFF WRITER ,
PROVINCETOWN — After watching the fate of AIDS patients change from almost certain death to long-term care, Len Stewart announced he will step down as head of the Cape’s oldest AIDS organization.
Stewart, who is running for state representative, said his decision to resign as executive director of the Provincetown AIDS Support Group has nothing to do with his bid for public office.
After three years with the group, he said he plans to retire at the end of 1998, because the major goals he set have been accomplished or are in motion.
“Everyone has visions. When reality meets your vision, when an organization outpaces your vision, then it’s time for a new vision,” Stewart said.
When Stewart came aboard in 1995, Alice Foley, the former director and a founder of the group, had been asked to resign by the board of directors. The acrimonious dismissal of Foley caused a major shake-up of the administrative structure of the 10-year-old group.
Since Stewart was appointed, the group’s budget has tripled along with its number of clients and the services available to them.
New services include: the Foley House, housing for 10 people with AIDS The Gay Men’s Prevention Project, which handles education and outreach to prevent the spread of the virus and a needle exchange program that allows drug addicts to get clean needles.
The Provincetown AIDS Support Group in 1996 became the umbrella organization for two other AIDS groups on Cape Cod, the Upper Cape AIDS Network and Cape AIDS Resource Exchange and Services. Stewart also administers any state funds for AIDS that go anywhere on the Cape and the islands.
In 1996, protease inhibitors started to prolong the life of infected individuals. This changed the focus of AIDS health providers.
“We’ve gone from crisis mode when clients died on a regular basis, to a time when they are living longer but continue to have needs,” said Gary Reinhardt, chairman of the group’s board of directors.
When Stewart began in 1995, the group took care of 130 people with AIDS. Today, there are 250 clients. The group’s budget is about $1.2 million.
“The challenge for the next executive director is learning to think outside the box,” Stewart said. “To come up with new ways of helping people maintain their medical regimen.”
Reinhardt said the board of directors will start a nationwide search for a new director soon.
169 1998 Cape Cod Times. All rights reserved.