William Aull, June 29, 2020

William Aull, June 29, 2020

AIDS (Disease)

Hospices (Terminal care)

Bill Aull, for many years a caregiver at the Rainbow Home near Reading, PA, shares his experiences during the height of the AIDS epidemic in the 1980s and 1990s. He reflects on specific patients, the role of Catholic Church in AIDS care, and the operations and services of Rainbow Home.

Special Collections and Archives, Trexler Library, Muhlenberg College

2020-06-29

This oral history recording was sponsored in part by the Lehigh Valley Engaged Humanities Consortium, with generous support provided by a grant to Lafayette College from the Andrew W. Mellon Foundation.

Copyright for this oral history recording is held by the interview subject.

This oral history is made available with a Creative Commons Attribution Non-Commercial 4.0 International License (CC BY-NC 4.0). The public can access and share the interview for educational, research, and other noncommercial purposes as long as they identify the original source.

40 Years of Public Health Experiences in the Lehigh Valley LGBT Community

video

English

MovingImage

PH40_04

Liz Bradbury

William Aull

video/mpeg

1:29:29

5.4 June 29, 2020 William Aull, June 29, 2020 PH40_04 01:29:29 LVLGBT40 40 Years of Public Health Experiences in the Lehigh Valley LGBT Community Muhlenberg College: Trexler Library Oral History Repository This oral history recording was supported by a grant from the Lehigh Valley Engaged Humanities Consortium (LVEHC). AIDS (Disease) Hospices (Terminal care) William Aull Liz Bradbury video/mpeg AullWilliam_20200629_video 1:|18(12)|41(2)|55(5)|64(4)|73(11)|92(11)|109(1)|120(14)|135(2)|145(10)|158(2)|168(9)|178(7)|187(13)|197(1)|206(2)|216(4)|226(7)|236(8)|246(6)|256(1)|268(6)|283(16)|299(5)|313(10)|320(8)|330(4)|340(2)|355(18)|367(5)|374(2)|391(8)|397(2)|417(4)|426(6)|434(15)|444(7)|457(2)|468(9)|482(14)|491(1)|502(12)|511(3)|519(16)|530(9)|540(11)|551(16)|562(13)|571(1)|580(4)|589(9)|599(5)|610(5)|622(10)|634(2)|647(6)|658(4)|668(16)|679(3)|689(9)|699(6)|708(11)|725(3)|738(1)|755(11)|769(11)|778(13)|788(3)|802(2)|810(7)|821(2)|834(13)|846(3)|856(6)|866(5)|881(12)|893(3)|901(3)|907(16)|916(1)|925(6)|934(12)|949(1)|967(2)|975(8)|997(11)|1012(9)|1023(17)|1037(10) 0 https://youtu.be/BFcTQtrG1UE YouTube video 0 Interview introductory material and consent 183 First awareness of the disease I do, it was actually nineteen eighty-seven. I was in a gay men’s leather club in Reading at the time and we had a meeting and we were getting notices that club members that we knew were in one of the local hospitals. 273 Caregiving and the beginning of Rainbow Home So in eighty-nine there was an article in the Reading Eagle and the Reading Times that a group of government officials from the commonwealth and several sisters from different women’s religious orders in the Catholic Church were going to establish a personal care home on the grounds of the Wernersville State Hospital because at that time they were starting to lose some people from the state hospital facility. Catholic Church ; Rainbow Home ; Reading PA ; The Reading Eagle ; The Reading Times ; Wernersville ; Wernersville State Hospital Nursing ; Rainbow Home ; Volunteering 638 Illness and death of a loved one My one and only love moved to Philadelphia. I was in nursing school at the time in seventy-two. And Eric and I said, “We’re going to stay in touch.” He moved to Philly for a better job. And then I didn’t hear from him and I’m like, “This is weird, because he’s usually pretty good about staying in touch.” 895 Joining the staff at Rainbow Home and redoing the hospital And the next day Sister Mary called me and said, “I want to put you on staff.” And I said, “Okay.” And so we painted and we redid -- because the wards in that building were god-awful colors, we’re talking like brown ceilings and yellow walls. So Sister Cecilia, who should have been a decorator if she wasn’t a nun, did an awesome job. I mean it was very homelike. 976 Life and activites at Rainbow Home And we had a lot of really great times in that building. I mean we had events. We took them on field trips. We took them to Knoebels if they were able to go. I took a couple of them shopping on their own. We celebrated all the holidays. So there was a lot of life and living in Rainbow Home. 1096 Religious services and memorials And then the last three years I was also in charge of the pastoral care department because our Episcopal deacon -- and then she became a priest -- got a parish. And so I worked with the clergy. And that was eye-opening, because I had a few that I wanted to say, “Well, I’m sorry you feel that way.” I would have clergy that would refuse to give them anointings on their deathbed. So I cheated. I did it. But I switched the formula that I read. I didn’t say, “I absolve you of all sins and censures.” I said, “May the Lord absolve you.” Depending on whatever their faith was. I was very ecumenical in that. 1164 Relationships and fun activites at Rainbow Home And a lot of the residents -- the residents became close to each other. It was like a family. And I think that Sister Mary said it best. It was the only place where the gay man could pass the mashed potatoes to the straight woman who would pass them to the drug user who would pass them to the whatever. 1386 Religious structure of Rainbow Home LB: So this was in a Catholic hospital? WA: No. We were ecumenical. LB: Oh, okay. WA: We just had the sisters there to -- you know, they were the ones that really got it going. And back then a lot of the hospices were being run in Catholic hospitals. One of the big ones was Saint Vincent’s in the Village, in the West Village in New York. That was a very very big -- that was a whole floor of the hospital. Saint Clare’s had a unit. But again the staff obviously was very ecumenical. 1653 Funding and facilities for Rainbow Home / local community reception LB: But who was funding that? Was it coming from people’s -- WA: Donations. Of course I mean their insurance kicked in. And we had a lot of very generous benefactors. Al -- Mr. Boscov donated all new equipment for the kitchen. And we only had to pay the Commonwealth of Pennsylvania $1 a year for rent, and that was set up when Senator Mike O’Pake was in office. So we paid the state $1 a year rent. 1778 Introduction of AZT and its side effects / Health insurance &amp ; preexisting conditions LB: When you were talking about AZT, was that later? Because AZT had a lot of side effects and stuff. Were you seeing that as well? Talk a little bit about the AZT stuff. WA: We weren’t seeing a lot of side effects with AZT. The drug that we saw the most side effects was Crixivan. And that came on later. And the reason that we were trying to figure this out was why are we suddenly -- what’s going on with this drug. 2040 St. Joseph's Hospital in Reading / doctors LB: Let’s see. When you were talking about Saint Joe’s, what’s Saint Joe’s? That’s a Catholic hospital? WA: Saint Joseph’s was a Catholic hospital in Reading. And Dr. Woodward was on staff there. But the primary amount of our -- if they were local -- were being seen by Dr. DeBenedictis and Dr. Jones because Dr. D was one of the first infectious disease doctors to get into the field. Dr. Woodward came in later. 2312 Funeral services for Rainbow Home patients LB: It was. Let’s see. So were you having funerals there? Did you have anybody that would do the funerals for you or stuff like that? WA: We did. We did. Jay Gilbert was one. Jay is very good. Anyone from the Lehigh Valley. Now as far as in Reading, I really don’t remember who they were, because I just remember Jay’s name floating around a lot. If they were from up this way. I’m sure there were one or two down in Reading that were really good about that. Because they knew who we were and what we were. 2388 The toll of working with dying patients LB: It must have been very hard to have people dying and knowing that that was going to happen to people for you. Did that take its toll? Well, apparently it did. But sounded like you did it for a long time. It was really wonderfully gracious of you. WA: Yeah, I mean there were times when I would come home from work. And if we had someone who was actively dying -- and Brenda was on -- for the first two years Brenda was all alone, and then they put a second staff member on. So I had a pager at that point. 2663 The story of David Well, I think probably one of the toughest ones for me, and I had a few, was I went down to Jersey to do an assessment on a potential resident. And David was in a nursing home in Atlantic City, so you can picture a nursing home is already not a good sign. So I go in and here’s David, six-one, six-two. Dark brown hair, jet-blue eyes. Laying in a bed. 3217 Communicating with families of the deceased We only had one family that really didn’t want anything to do with their son. And I called them when he started actively dying and said, “Are you going to come visit?” “Well, of course we are.” I said, “Well, someone wrote on the admission paper.” And this was how it was worded. When he kicks the bucket don’t call us. 3299 The night three patients died WA: Because that was the night I had three deaths an hour apart. LB: Oh gosh. WA: He was number two. So I had three actively going at once. And my coworker, she was the best. Bev said, “You take care of the three, I’ll take care of the other nine.” 3359 Medications and nursing care LB: And what kind of meds were you giving people then? Was this in the eighties or was it mostly -- what kind of (inaudible). WA: Primarily their HIV/AIDS but also some of them would have weight loss. There were two drugs. There was Marinol which was synthetic marijuana, but it did not give them a buzz or get them high, it only stimulated the part of the brain that said, “You need to eat.” 3475 Mental health for the caregivers And they had a therapist for us. Because once a month we would have a meeting to talk about how we felt in the midst of losing all these guys and gals. So that mentally we were okay. But I knew when Tommy died. I said, “Okay, that’s it.” 3557 National Catholic AIDS Network And I had joined -- they are no longer, but I had become a member of the National Catholic AIDS Network or NCAN and we would meet every summer in Chicago at Loyola University on the lake. And we would have workshops, we would have time to just share our stories. But what was really wonderful was the one year -- Cardinal Bernardin was in charge of the archdiocese at that time and very well known for being a compassionate cardinal. 3748 Reflecting on age and the passage of time LB: Yeah. How old were you in the eighties? WA: Geez, well, I’m sixty-seven now, so I would say in my fifties, I had to be in my fifties. Late forties, early fifties, I -- at this point (inaudible) twenty-six, fifty-one, let’s see. LB: It was thirty-five years ago, honey? WA: Huh. LB: It was thirty-five years ago. WA: Yeah, what can I tell you? That’ll be an edit. LB: It’s okay. I think one of the things is we forget when you’re a grown-up and you’re doing things like that we forget that it was a long time ago when we were kids in a lot of ways, we were in our (inaudible) thirties. What did you say, you’re sixty-seven now? You were born in nineteen -- 3832 Starting the AIDS Walk in Reading WA: And Ozzie, who had one of the local bars, Ozzie and I were responsible for getting the first AIDS walk in Reading going. And we worked with -- oh, I can’t. Her son, what’s the name of the farm? Who did you -- LB: Rodale. Ardath Rodale. WA: Yeah, we worked with -- yeah. LB: Talking to Maria Rodale about Ardath Rodale. WA: To do the first AIDS walk in Reading. 3908 Changes brought by better medications LB: In about nineteen ninety-three, which is about the middle of the time that you were at Rainbow House, medication really changed. And in ninety-three the worst part about the epidemic really started to fall back a little bit because there were actually drugs that could really prolong people’s lives, it wasn’t so much of a death sentence. Were you noticing a change then? What was it like? WA: Yeah. Well, for us it was really great because we had them longer. And for the most part they were doing very well on them. And that was thanks to like ACT UP and other organizations that were really getting up in the face of these drug companies and saying, “Why are you putting these on hold forever?” 4043 Involvement (or lack thereof) of the Catholic Church / Priest as a patient t up to New York because I was doing my own stuff down here. The one year the bishop of the Catholic diocese had an anointing service at DeSales and he said, “It’s open to everyone.” So I took a couple of the guys up. And afterwards I said, “Um, how come you never visit?” Question mark. And he goes, “I don’t have time.” I said, “Oh. Really? Oh. Okay.” Because here’s the interesting thing. We had a priest in the house as a patient. And [Claude?], father, had surgery. And he got bad blood. This is before they were doing the big testing. And he was from the Diocese of Camden. So he came up, great guy, we all loved padre, and every morning I would get him up, we did his a.m. care, gave him his meds. And then he and I would go into our multipurpose room and he would do Mass. 4362 Relationship of HIV/AIDS and his experience to the COVID-19 pandemic LB: I wondered if you wanted to talk anything about how you see the relationship of HIV/AIDS and the epidemic then and what you were doing and its relationship to what’s happening now with COVID-19. What do you think about that? WA: Well, I mean I think we need to be aware that this COVID-19 is very nasty. And we have to really look at our brothers and sisters that are HIV-positive and even with the meds they’re immunosuppressed as it is. And this could really knock the socks off of them. They could end up in the hospitals and in ICUs and on vents. 4529 Message for viewers in the future LB: Yeah. So we have about fourteen minutes left. But I would love for you to think about somebody’s going to see this thirty years, forty years from now. And you have an opportunity to talk to the future here. Go into the future and tell people what you think they really should know about the HIV/AIDS epidemic. And maybe even talk about -- some people -- and I think David talked about this, but other people that I’ve interviewed, because I think you’re the sixth interview I’ve done, they’re talking about the lack of recognition by elected officials about it for so many years that it was very painful. And you have any insight on that? And then also just to tell people what they should know about this time. WA: Well, as far as the -- I think David covered it pretty good with the elected officials. That for so many years it was ignored. And it’s like it’s their disease, let them deal with it. Then when it started to hit everyone else okay, now we have to do something about it. 4644 Sharing memories of specific patients for future generations I’m going to share a couple of the guys as far as their names and what they did because I think for future generations the name and what they did is something that they need to know. And it’s first names. I mean it’s going to be first names. Andy had a double doctorate in chemical physics. Brilliant mind. Larry was the chief tie department buyer for Lord &amp ; Taylor. Rich had his own fashionwear. It was called Poshwear. Jeff was a well known hairdresser in the Washington area. David was a top-notch chef. Leo was a member of the United States Navy with honorable discharge. So he served his country before Don’t Ask, Don’t Tell. 4761 Viewing the AIDS quilt If you get a chance, future generations, to see any part of the quilt, the quilt will tell the stories. You don’t have to know them. We had a quilt showing our fifth anniversary at Rainbow Home at Albright. And we took in an extremely high amount of new quilts. The guys from NAMES Project were like, “We’ve never had this many at such a small gathering.” Well, surprise. Because we were making them. We did a house quilt every year. 4902 Concluding remarks Because we would check in on each other constantly after a death. We had a quick staff meeting to make sure that everybody was doing okay. Because our counselor would say, “If you need to talk after a death you know where I am.” So I hope that they never have to face any kind of pandemic like this, this current -- or the pandemic of HIV/AIDS. But if they do, get involved. Don’t sit on the sidelines. That’s it. MovingImage Bill Aull, for many years a caregiver at the Rainbow Home near Reading, PA, shares his experiences during the height of the AIDS epidemic in the 1980s and 1990s. He reflects on specific patients, the role of Catholic Church in AIDS care, and the operations and services of Rainbow Home. WILLIAM AULL . LIZ BRADBURY: There we go. Now we&#039 ; re recording. Oh, you look great, the light is terrific on you. I have to read you this thing. And it says, &quot ; With this project, Bradbury-Sullivan LGBT Community Center and Trexler Library at Muhlenberg College will collaborate on 40 years of public health experiences in the Lehigh Valley LGBT community, collecting and curating local LGBT health experiences from HIV/AIDS to COVID-19.&quot ; My name is Liz Bradbury and I&#039 ; m here with William Aull. Is that the way you pronounce it? WILLIAM AULL: Yes, ma&#039 ; am. LB: To talk about his experiences in the Lehigh Valley LGBT community during this time of COVID-19 pandemic as part of the Lehigh Valley LGBT Community Archive. And let&#039 ; s see. We&#039 ; re meeting on Zoom on -- oh, I&#039 ; m supposed to say the date. I haven&#039 ; t been saying the date of this. On June 29th, 2020. Forgot to say that on Maria&#039 ; s. So thank you very much, Bill, for your willingness to speak with us today. To start, can you please state your full name and spell it for me? WA: Okay, William Arthur Aull, W-I-L-L-I-A-M A-R-T-H-U-R A-U-L-L. LB: Okay. And will you please share your birth date? WA: September 26th, 1951. LB: Okay. Do you consent to this interview today? WA: I do. LB: Do you consent to having this interview being transcribed, digitized, and made publicly available online in searchable formats? WA: I do. LB: Do you consent to the LGBT Archive using your interview for educational purposes in other formats including films, archives, Web sites, presentations, and other formats? WA: I do. LB: Do you understand that you will have thirty days after the electronic delivery of the transcript to review your interview, identify any parts that you&#039 ; d like to delete or withdraw from your interview from the project? WA: I do. LB: You could also decide to blow off the whole thing if you wanted. Although we hope you don&#039 ; t. Okay. So we&#039 ; re going to just start this out. And the very first question -- I sent these questions to you before -- but the very first thing to just get you going here is to say in the midst of this current health crisis that we&#039 ; re experiencing we want to take this opportunity to look back to those who lived through the worst of the HIV/AIDS epidemic in the nineteen-eighties and the nineteen-nineties. Do you remember the first time you became aware of the disease? WA: I do, it was actually nineteen eighty-seven. I was in a gay men&#039 ; s leather club in Reading at the time and we had a meeting and we were getting notices that club members that we knew were in one of the local hospitals. Reading Hospital &amp ; Medical Center. But we weren&#039 ; t getting the details of what. So I said, &quot ; Well, I&#039 ; m going to go visit -- name -- and see what&#039 ; s going on.&quot ; I get over there and they&#039 ; re like, &quot ; You have to put this on and this on.&quot ; I mean I was in full surgical gear. I&#039 ; m like, &quot ; I&#039 ; m not going to the operating room.&quot ; &quot ; Oh, no, no, they have this disease, we don&#039 ; t know what we&#039 ; re calling it yet, but you have to wear this to go in.&quot ; &quot ; Okay then.&quot ; Then it was GRID. Then it was this. And then finally everyone said, &quot ; Okay, it&#039 ; s autoimmune deficiency syndrome, aka AIDS.&quot ; I&#039 ; m like, &quot ; Oh, okay.&quot ; And people were just dropping like flies. So in eighty-nine there was an article in the Reading Eagle and the Reading Times that a group of government officials from the commonwealth and several sisters from different women&#039 ; s religious orders in the Catholic Church were going to establish a personal care home on the grounds of the Wernersville State Hospital because at that time they were starting to lose some people from the state hospital facility. LB: Is that in Reading? WA: Yeah, it was in Wernersville. LB: Oh, Wernersville. WA: Wernersville which was right -- yeah, about fifteen minutes outside of Reading proper. LB: Okay, I&#039 ; m sorry. WA: That&#039 ; s okay. So one Sunday one of the sisters came to our parish to talk about what Rainbow Home was going to be, what Rainbow Home was going to do. And they needed volunteers. And I thought you know, I could give them a couple hours a week to do whatever. So I talked to Sister [Carol Ann?], who was the volunteer coordinator, and I said, &quot ; I have an extensive background as a nursing assistant.&quot ; Well. LB: Ah. WA: The next day I get a phone call from Sister Mary, who was going to be in charge of the caregiving. Like here it comes. &quot ; I&#039 ; d like to interview you for a position. A paid staff member.&quot ; &quot ; Okay.&quot ; LB: Oh, okay, yeah. WA: Yeah. From volunteer to pay. So I was going down to visit a friend of mine, [Johnjohn?], who has since passed away. And his partner and he did not live together, but Johnjohn had a zero T cell count but you would have never known he was full-blown AIDS, I mean healthy as an ox, took his meds, rode his motorcycle, went water-skiing, [ski skiing?], the whole nine yards. But his partner couldn&#039 ; t give him his B12 shots. He was deathly afraid of needles. So I talked to Sister Mary before I left, and I said, &quot ; Could we just review this?&quot ; And she goes, &quot ; Yeah.&quot ; So I would go down once a month and give him his B12s. So I did my interview and she said, &quot ; Well, I have to check out your references, etc.&quot ; She said, &quot ; I&#039 ; ll get back to you in a couple days.&quot ; &quot ; Great.&quot ; So I go down. And at the time I was in the Roman Church. I was Roman Catholic. I&#039 ; m now Episcopalian. So I stopped at the shrine and I said a prayer in front of a statue of the Blessed Mother and said, &quot ; Hey, if I&#039 ; m going to take this ministry on, could I have a sign?&quot ; Johnjohn and I are having dinner. He goes, &quot ; You&#039 ; re going to take care of a lot of people with this disease so fasten the seatbelt.&quot ; And I&#039 ; m like, &quot ; Okay.&quot ; It&#039 ; s that quick. Like God was not saying -- yeah, you&#039 ; re not waiting around, dude, I&#039 ; m going to get you in now. So in nineteen-ninty on the Feast of All Souls, which was November seventh -- I&#039 ; m sorry, November second -- we dedicated Rainbow Home. Now Rainbow Home was open to anyone. And the reason that it was named Rainbow Home was that we had a rabbi on the board, and they were trying to come up with a name, and he said, &quot ; Well, in the book of Genesis,&quot ; and he proceeded to do his thing. And I&#039 ; m like, &quot ; Well, that&#039 ; s kind of cool, I really like that.&quot ; But we did fly a rainbow flag outside the building. LB: Great. WA: But we had to tell people that it was open to everyone. It was not just the LBGTQ community. In the beginning we would have maybe two or three, the first year, year and a half, two years. Then all of a sudden word got out because people were in the hospitals but they were sending them home and their parents were trying to take care of them. Well, as they progressed in the disease they needed twenty-fourhour care and you&#039 ; ve got moms and dads that don&#039 ; t know the first thing about anything other than aspirin. But for the first three years we were just giving basically AZT because that was the drug at the time. And then more drugs would come in. We were a thirteen bed facility. And about three and a half years in we started to fill up. Then we had a waiting list to get in. We took care of anyone with HIV/AIDS but we also would accept cancer patients. So we wanted to make sure that people knew that if they had a loved one who was end-stage cancer that they were more than welcome. And we actually had a mom who had really bad breast cancer who came to spend her last days. And so the guys and the gals in the house referred to her as the housemother. LB: (inaudible). WA: Any medications that we gave were either oral or rectal by -- and that was the only way. If they needed any kind of shot the RNs would come in. We worked with visiting nurses, and they would come in and do them. My one and only love moved to Philadelphia. I was in nursing school at the time in seventy-two. And Eric and I said, &quot ; We&#039 ; re going to stay in touch.&quot ; He moved to Philly for a better job. And then I didn&#039 ; t hear from him and I&#039 ; m like, &quot ; This is weird, because he&#039 ; s usually pretty good about staying in touch.&quot ; And his mom called me and said, &quot ; He&#039 ; s in Reading Hospital in the ER, he&#039 ; s got full-blown AIDS,&quot ; and this was two years later. And he goes, &quot ; They have no beds, I don&#039 ; t know what to do.&quot ; I said, &quot ; Let me -- how bad is it?&quot ; She goes, &quot ; It&#039 ; s bad.&quot ; Said, &quot ; Well, let me call Dr. Woodward at Saint Joe&#039 ; s and see if maybe I can get him up there.&quot ; Because I talked to Dr. [Dee?] and I said, &quot ; Listen. His mom can&#039 ; t take care of him. Rainbow Home isn&#039 ; t open yet, as you know, because you&#039 ; re one of our medical directors. So what are you going to do?&quot ; He says, &quot ; Yeah, go ahead, talk to Chris Woodward and see if Chris is willing to take him on.&quot ; So I called Chris and I said, &quot ; Listen. Do you think you could do this for me?&quot ; He goes, &quot ; Yeah, I&#039 ; ve got beds.&quot ; He said, &quot ; I&#039 ; ll get him up here.&quot ; I said, &quot ; Okay.&quot ; So I called Eric&#039 ; s mom and I said, &quot ; They&#039 ; re going to move him to Saint Joe&#039 ; s. They&#039 ; ve got beds. Call me when he gets there.&quot ; Okay. So I went up and I said, &quot ; Listen. You&#039 ; ve got your own room and you&#039 ; re stuck with me for whatever time is left. I&#039 ; m going to be staying overnight with you. I clear it with everyone.&quot ; All the nurses knew, the staff knew. And about the ninth day I&#039 ; m like, &quot ; Okay, he&#039 ; s starting to do the slide.&quot ; I could see that death was coming to the door and I had to prep his mom and say, &quot ; Listen. I can&#039 ; t say when, I don&#039 ; t know how. But he&#039 ; s starting. Okay? So I&#039 ; m just trying to prep you.&quot ; And on the eleventh day I was with him and he goes, &quot ; I&#039 ; m ready to go.&quot ; I said, &quot ; Okay. Remember the good times. Know that I will always love you. My love for you is not going to end the minute you leave this world.&quot ; He goes, &quot ; I have a really stupid favor to ask.&quot ; I said, &quot ; Please, there is no stupid favor.&quot ; He goes, &quot ; Do you think they&#039 ; d get pissed off if you crawl into bed with me?&quot ; I said, &quot ; Well, if I can get a watchdog at the door.&quot ; So in walks Sister [Joseph Ellen?] who was one of my nursing instructors. And I said, &quot ; I&#039 ; m going to ask you a favor. This is probably very off the chart. Do you think you could give us maybe fifteen minutes alone? He just wants me to crawl in bed with him and hold him. Okay?&quot ; And she goes, &quot ; I&#039 ; ll stand watch.&quot ; She stood outside the door, wouldn&#039 ; t let anyone in. She did call Dr. Woodward, she was still a nursing sister, she called Dr. Woodward and said, &quot ; Listen. Eric is on his way. And Bill is in with him. So I&#039 ; m giving them some private time.&quot ; And he said, &quot ; Just know that I love you. I will always love you. Thank you for being here.&quot ; I said, &quot ; Well, go ahead and take your nap. Okay?&quot ; I&#039 ; m like, &quot ; This is not the nap. I get this.&quot ; And so he just went very peacefully in my arms. And no pain. They kept him. He was high-flying (inaudible) [and?] morphine. They had a drip going. So that was it. I gave him his bath and got him all ready for his trip to wherever he was going. And called his mom and said, &quot ; You need to come in.&quot ; And the next day Sister Mary called me and said, &quot ; I want to put you on staff.&quot ; And I said, &quot ; Okay.&quot ; And so we painted and we redid -- because the wards in that building were god-awful colors, we&#039 ; re talking like brown ceilings and yellow walls. So Sister Cecilia, who should have been a decorator if she wasn&#039 ; t a nun, did an awesome job. I mean it was very homelike. The only thing that was hospital-looking was the bed. But everything else, we had curtains, they had their own TV, they had closets for their clothes. And so we started taking people in. And the first three months, I was on night shift. And then Mary moved me over to days or evenings. And I learned so much about life and living but also a hell of a lot about death and dying. And how some of them would go very peacefully and some of them would fight to the end. And it all depended on their spirit and what was going on. And we had a lot of really great times in that building. I mean we had events. We took them on field trips. We took them to Knoebels if they were able to go. I took a couple of them shopping on their own. We celebrated all the holidays. So there was a lot of life and living in Rainbow Home. And then in ninety-seven after seven years I said, &quot ; Okay, I&#039 ; m done, I can&#039 ; t do this anymore.&quot ; Because in the beginning I didn&#039 ; t know a lot of the people, but the last three years, a lot of my friends were coming in. And I had to be both a professional health caregiver but I had to cross the bridge and be the friend when the time came. And there were a couple that just got into a spot in my heart that -- forget it. LB: Was this set up as a hospice kind of thing? WA: It was under hospice guidelines. So yeah. It was under hospice guidelines. But it was more a personal care home. But we did fall under hospice. And that&#039 ; s why I was able to assist with medications. And that&#039 ; s what made it really unique. And we had a corps of volunteers that were just absolutely awesome. And a lot of them were parents of guys and gals that were there. And so we told them they had to wait a year, and then they could come back and volunteer. And a lot of them would do that. And then the last three years I was also in charge of the pastoral care department because our Episcopal deacon -- and then she became a priest -- got a parish. And so I worked with the clergy. And that was eye-opening, because I had a few that I wanted to say, &quot ; Well, I&#039 ; m sorry you feel that way.&quot ; I would have clergy that would refuse to give them anointings on their deathbed. So I cheated. I did it. But I switched the formula that I read. I didn&#039 ; t say, &quot ; I absolve you of all sins and censures.&quot ; I said, &quot ; May the Lord absolve you.&quot ; Depending on whatever their faith was. I was very ecumenical in that. And we would do a monthly memorial service and then we would do a yearly. And that was open to everyone. And a lot of the residents -- the residents became close to each other. It was like a family. And I think that Sister Mary said it best. It was the only place where the gay man could pass the mashed potatoes to the straight woman who would pass them to the drug user who would pass them to the whatever. And some of the stories that they would tell me when I was still working in the kitchen. I would just stand there and I would laugh. I&#039 ; m like, &quot ; I could never share these outside of these walls.&quot ; Because they were quite colorful. And I do mean colorful. Like I don&#039 ; t think I could put these in a book. No. Not really. LB: Because they were wild stories? WA: Oh, very wild, very wild. But the kind that gave me a better idea what to say and what to use for the memorial service. Because I could write those in the pastoral care part of the chart. And that&#039 ; s what made it such a unique place was that in the beginning a lot of people were like, &quot ; Well, I don&#039 ; t want to go there.&quot ; And then they would be there for a while and they&#039 ; d be like, &quot ; Wow.&quot ; We had water. Especially in the summer the guys would get their water guns and they&#039 ; d be outside. Like I&#039 ; d walk in ready to go to work and I&#039 ; d be in my scrubs. And everyone&#039 ; s like, &quot ; Oh, you got recepted, didn&#039 ; t you [hear?]?&quot ; My scrub top looked like I took it right out of the washer and didn&#039 ; t put it in the dryer because Bobby Gordon would like hhhh with the squirt gun. I&#039 ; m like, &quot ; Robert, I&#039 ; m going to get you for this tonight, trust me. Beware.&quot ; &quot ; You wouldn&#039 ; t do anything.&quot ; &quot ; Oh, wouldn&#039 ; t I? Beware.&quot ; And that was a great thing. The staff had such a good relationship with the residents. And the residents had a good relationship with the staff. They all respected the sisters that were there. And if we had anyone who was using drugs and they would go out for a day pass, if we suspected that they might have relapsed, we had a protocol where we would just pull a drug test. We didn&#039 ; t pull randoms. They had to really demonstrate. And there were only maybe two or three that fell off. But they had meetings. They had AA meetings, NA meetings that they had to go to. And that was part of the agreement to be (inaudible) into the building. LB: Oh, I&#039 ; m losing your voice. WA: Am I back? LB: Yeah, now you&#039 ; re back, yeah. WA: Okay. LB: So you were saying they had AA meetings and NA meetings and what else did you say? WA: That was it. NA and AA. LB: So this was in a Catholic hospital? WA: No. We were ecumenical. LB: Oh, okay. WA: We just had the sisters there to -- you know, they were the ones that really got it going. And back then a lot of the hospices were being run in Catholic hospitals. One of the big ones was Saint Vincent&#039 ; s in the Village, in the West Village in New York. That was a very very big -- that was a whole floor of the hospital. Saint Clare&#039 ; s had a unit. But again the staff obviously was very ecumenical. It wasn&#039 ; t all -- Brenda was a staff member, Bev was a staff member, and I was a staff member. So we were the three lay staff members. Brenda worked nights, Bev and I did evenings or days. LB: So these were nuns though that started -- WA: Yes. LB: They started it out of their convent or out of their sisterhood or how did that work? WA: Well, what happened was Sister Mary had her master&#039 ; s and she taught nursing and she worked at the White House down in Washington, which was a big -- it was attached with -- I forget who they were attached with. It was some big organization in DC. But she would do home visits to the guys in Georgetown, mostly Georgetown, I think it was under Whitman-Walker down there. So yeah. And she was on sabbatical. And then Sister Carol Ann was a teacher. She retired. Sister Mary Therese was a teacher and she retired. And forgot. Carol Ann. Sister [Fabian?] was actually the sister that got this started. She&#039 ; s at the Precious Blood Convent in Shillington. And people were asking her about a place, because she was getting phone calls, because she was also a nursing sister. And then Sister [Mary Cecilia?] was a practical nurse. So they all had nursing backgrounds. And back then a lot of the nursing orders were the nuns and the three orders of Catholic brothers that had nursing brothers were the ones that were opening the hospices in their hospitals or their facilities. And everyone just loved them because they were free spirits. They gave of their time and their talent. And we were a big family there. And then when I left and I was the last of the original staff, and all the nuns had left except for one, and she only stayed another year because she noticed it was becoming more of a business than it was what the original meaning and the beginning of Rainbow Home was. Because our mission statement started, &quot ; Believing in the worth and dignity of each person as a child of God.&quot ; That was the beginning of our mission statement. And in the entryway we had this beautiful rainbow with the mission statement printed on it. And then the quote from the book of Genesis was included in that. LB: But who was funding that? Was it coming from people&#039 ; s -- WA: Donations. Of course I mean their insurance kicked in. And we had a lot of very generous benefactors. Al -- Mr. Boscov donated all new equipment for the kitchen. And we only had to pay the Commonwealth of Pennsylvania $1 a year for rent, and that was set up when Senator Mike O&#039 ; Pake was in office. So we paid the state $1 a year rent. LB: (inaudible) state hospital. WA: Right. LB: Oh, I see, okay, I see. WA: Yeah, it was on the grounds of the state hospital. And we only used the first floor. It was a two-floor, but we only used the first. But yeah, it was -- good times. If you could say good times. I mean a lot of laughter. I mean if I ever write a book people will laugh on one page and cry on the next. And a lot of times I still see two or three families that live in the area. Like we&#039 ; ll just randomly run into each other. And they&#039 ; ll always bring up how grateful they were that they had a place for their son to die with dignity. When churches were saying, &quot ; This is God&#039 ; s wrath and all this.&quot ; And I&#039 ; m like, &quot ; Yeah yeah yeah, okay, bye-bye, you haven&#039 ; t lived it until you see what we do. And that certainly is not the man&#039 ; s wrath.&quot ; LB: When you were talking about AZT, was that later? Because AZT had a lot of side effects and stuff. Were you seeing that as well? Talk a little bit about the AZT stuff. WA: We weren&#039 ; t seeing a lot of side effects with AZT. The drug that we saw the most side effects was Crixivan. And that came on later. And the reason that we were trying to figure this out was why are we suddenly -- what&#039 ; s going on with this drug. And so I asked Dr. Woodward. I said, &quot ; When you&#039 ; re signing death certificates,&quot ; they always, both of them, he and Bob, Dr. Jones, always put HIV/AIDS as the third. They never put it as the primary. Never. They were putting on a cardiac problem for a lot of them. And it was because Crixivan was causing heart tissue to be eaten. So they put it as primary cause of death [cardiomyelogamies?]. Second was tertiary was always HIV/AIDS. So the parents never had to worry, if they had insurance policies, that it would be refused. And that was a good thing about our docs. And our docs were very good. I mean I&#039 ; m not a registered nurse but I could do rounds with him. He would give me orders over the phone. I&#039 ; d write them in. And there was never a problem. LB: Was insurance denying HIV/AIDS care in those days? Talk about that a little bit. Was that something that would happen? WA: What&#039 ; s that? LB: Insurance denial of care. WA: Yeah. Yeah, there were certain companies that flat out would say -- it&#039 ; s like if you see the ads they have now when they say there&#039 ; s no medical questions. Like if you&#039 ; re looking at life insurance. Every one that I&#039 ; ve got, the first question is have you been diagnosed with HIV slash AIDS. It&#039 ; s the first question. It&#039 ; s a medical question. So really? I mean no medical question? Do you smoke, do you drink? They&#039 ; re all medical questions. Come on, insurance company. Really? It&#039 ; s a medical question. And I wonder what would happen if someone would check yes. You know what I&#039 ; m saying? That could be a bit of a -- oh, well, no, we&#039 ; re not allowing you to -- excuse me one second. My doctor. Hello. Yes. All right, thank you. Bye-bye. Okay. LB: I guess what happens is that insurance companies won&#039 ; t insure you for a preexisting condition except for that now you can&#039 ; t do that under the American Care Act as long as we continue to have that act. WA: Right. LB: Yeah. But that wasn&#039 ; t in place in those days. And people need (inaudible). WA: No. LB: Because whoever is seeing this video, hopefully people will look at this. But 30 years from now when both you and I are long gone, or 40 years or 50 years, people are going to look at this and see what we&#039 ; re saying about that time. And they may not understand that people weren&#039 ; t covered under insurance for preexisting conditions. WA: That&#039 ; s right. LB: Let&#039 ; s see. When you were talking about Saint Joe&#039 ; s, what&#039 ; s Saint Joe&#039 ; s? That&#039 ; s a Catholic hospital? WA: Saint Joseph&#039 ; s was a Catholic hospital in Reading. And Dr. Woodward was on staff there. But the primary amount of our -- if they were local -- were being seen by Dr. Benedictis and Dr. Jones because Dr. D was one of the first infectious disease doctors to get into the field. Dr. Woodward came in later. But the majority of them ended up at Reading for some odd reason. And Saint Joseph&#039 ; s would never refuse. The good sisters would be like, &quot ; No. We&#039 ; re not going to play the refuse game.&quot ; I mean I have to say that Eric got excellent care at Saint Joe&#039 ; s. I was very pleased with his care. And sadly, when Leo who was one of the guys, ended up in Reading with Pneumocystis carinii pneumonia I don&#039 ; t know what the problem was but the nurses were just kind of like, &quot ; He&#039 ; s in that room. If you need anything just let us know. We&#039 ; ll hand it to you.&quot ; Because I stayed. I did an overnight with him. I worked three to eleven and then I went to the hospital. Because his partner was a good friend of mine. I knew JR for a while. And JR was out West. And I said, &quot ; You need to come home because something&#039 ; s up with Leo and I don&#039 ; t know what, I don&#039 ; t know when, I don&#039 ; t know how, but he&#039 ; s in Reading right now.&quot ; So I stayed overnight. And I must have changed his bedsheets, I&#039 ; m going to guesstimate, five or six times during the night from the sweats from the meds they were giving him. And he said, &quot ; I want to come home. I want to come home. I don&#039 ; t want to die here.&quot ; And I thought okay, how am I going to handle this, because I don&#039 ; t know what to say to him. And I said, &quot ; Let me work on that.&quot ; That was my out. Because I figured. So I went to work the next day and I said to Sister Mary, &quot ; Have you heard from Dr. Benedictis at all about what&#039 ; s going on with Leo?&quot ; She said, &quot ; Yeah. They got him cleared up.&quot ; Like two days later he was back with us. But his stay was shortened. So JR had gone on a business trip and I said, &quot ; You need to come back.&quot ; I said, &quot ; He&#039 ; s on his way. He&#039 ; s transitioning. And I need you to get here because he&#039 ; s asking for you.&quot ; LB: He got some kind of infection or something? Was that it? WA: Just residual of the pneumonia. But not as bad. I mean they didn&#039 ; t have to tube him when he was in the hospital, thank God, he wasn&#039 ; t on a vent. Because one of the things that was automatically declared when you entered Rainbow Home was you were a do not resuscitate/do not intubate. They already had to sign DNR/DNI. LB: So most people who went to Rainbow Home were pretty much at the end of their lives then. WA: Yeah. We had a few that even after they closed there, there are two that are still floating around in the area that are doing quite well. And that&#039 ; s when all these wonder drugs came out in the late &#039 ; 90s. But before that it was a mess. LB: It was. Let&#039 ; s see. So were you having funerals there? Did you have anybody that would do the funerals for you or stuff like that? WA: We did. We did. Jay Gilbert was one. Jay is very good. Anyone from the Lehigh Valley. Now as far as in Reading I really don&#039 ; t remember who they were, because I just remember Jay&#039 ; s name floating around a lot. If they were from up this way. I&#039 ; m sure there were one or two down in Reading that were really good about that. Because they knew who we were and what we were. LB: Yeah. People have told me that I should try to talk to Jay Gilbert. And I haven&#039 ; t had a chance to contact him yet. But apparently he did loads of funerals for people and he was very generous too and didn&#039 ; t charge people or didn&#039 ; t charge people much. WA: Yeah. LB: Must have been hard. It must have been very hard to have people dying and knowing that that was going to happen to people for you. Did that take its toll? Well, apparently it did. But sounded like you did it for a long time. It was really wonderfully gracious of you. WA: Yeah, I mean there were times when I would come home from work. And if we had someone who was actively dying -- and Brenda was on -- for the first two years Brenda was all alone, and then they put a second staff member on. So I had a pager at that point. And I&#039 ; m like, &quot ; Just page me if it gets too crazy.&quot ; And it only happened two or three times. But I always share this one -- and it is funny. Two of the guys wanted to go to Washington. And two of us were Roman and one was Episcopalian. Dale was the Episcopalian. Tommy and I were the Romans. Well, we went to the basilica shrine for Mass. And it was the high Mass. So you&#039 ; ve got the full procession with the incense and everything, right? And Dale being ever Dale, as the thurible bearer was coming by swinging the incense, he looked and he goes, &quot ; Mary, I love your dress but your purse is on fire.&quot ; Not loud. Not loud. Just loud enough for the thurible bearer to hear this. And I&#039 ; m like, &quot ; Oh.&quot ; And there&#039 ; s this big mosaic of Jesus with his hands up with this angry look. And I&#039 ; m like, &quot ; Oh God, this is it, here comes the lightning bolt.&quot ; And Tommy looked at him and he goes, &quot ; What did you just say?&quot ; I&#039 ; m like, &quot ; Don&#039 ; t ask.&quot ; So when we got back everyone&#039 ; s like, &quot ; How was it?&quot ; And I&#039 ; m like, &quot ; Ah, it was interesting.&quot ; So I pulled Sister Mary aside and I said, &quot ; Oh by the way, if you get a call from the basilica this (inaudible).&quot ; And she just swore and she goes, &quot ; Oh God.&quot ; I&#039 ; m like, &quot ; That&#039 ; s about what I was saying under my breath.&quot ; Bill had a lot of anger when he first came. And I said, &quot ; What can I do to help you get rid of your anger?&quot ; And he said, &quot ; Just get me out of here for a day.&quot ; Well, he was still able to walk. So I said, &quot ; Okay. How about we go to the mall?&quot ; So I drove him down to King of Prussia from Reading and it was close to Mother&#039 ; s Day and I said, &quot ; Mother&#039 ; s Day is coming up, how about we get your mom a card and a gift?&quot ; Because they would hold funds for them in case they wanted to do something like that. He goes, &quot ; Okay.&quot ; So we got him a card. And his mom loved Oscar de la Renta, the fragrance. So we got her a small bottle of Oscar. And they wrapped it. And then we had the Mother&#039 ; s Day party. And his mother looked at me and she goes, &quot ; It&#039 ; s been eighteen years since I&#039 ; ve gotten a card, let alone a gift, from my son. What did you do to him?&quot ; I said, &quot ; We went for a ride. And I endured an hour and a half of rock music.&quot ; I wanted to take the radio out of the car and just throw it. Because I&#039 ; m like, &quot ; Okay. If I hear one more screaming in my ear I&#039 ; m going to scream.&quot ; If I ever do write a book, it&#039 ; s going to be the fun stories. With a little of the sadness in, just to make people realize we are human. LB: Well, feel free to tell me some of the fun stories, because I&#039 ; d love to hear those now. That&#039 ; s a great one, that&#039 ; s a wonderful one. WA: Well, I think probably one of the toughest ones for me, and I had a few, was I went down to Jersey to do an assessment on a potential resident. And David was in a nursing home in Atlantic City, so you can picture a nursing home is already not a good sign. So I go in and here&#039 ; s David, six-one, six-two. Dark brown hair, jet-blue eyes. Laying in a bed. And I&#039 ; m like, &quot ; What&#039 ; s up with this?&quot ; I said, &quot ; Do they get you out of bed?&quot ; &quot ; No.&quot ; &quot ; Do they give you a shower at all?&quot ; &quot ; When they feel like it.&quot ; I said, &quot ; Are you getting your meds?&quot ; &quot ; Sometimes.&quot ; &quot ; On time?&quot ; &quot ; No.&quot ; &quot ; Okay.&quot ; Now I have to remember I am not a professional nurse. So I can&#039 ; t go out and raise holy you-know-what because that&#039 ; s not going to sit well. All right. So I get the chart. I get the information I need. I get in the car. I get on my phone. I talk to the social worker first. I say, &quot ; Get Sister Mary on the phone.&quot ; And I said, &quot ; Mary, we&#039 ; ve got to get him up there. Okay. We have got to get him up there.&quot ; Well, he had been in bed so long that he couldn&#039 ; t walk. They weren&#039 ; t doing any PT or anything. So when the visiting nurse came out I said, &quot ; Can I do some range of motion with him just like abduction, adduction, move up, move down, move sidewards?&quot ; She goes, &quot ; Oh yeah.&quot ; I said, &quot ; Okay.&quot ; Said, &quot ; David, what is one of your goals?&quot ; And we always asked them what goals they had because we wanted it to be very integral. Not this is what we&#039 ; re going to do, deal with it. And he goes, &quot ; I want to get to church, I want to be able to stand and get in a car even if it&#039 ; s from a wheelchair. I don&#039 ; t care.&quot ; I said, &quot ; Okay, bro, fasten your seatbelts, because I&#039 ; m your primary care provider. So guess what we&#039 ; re going to be doing.&quot ; So after his shower we get back in bed, after he was dried off and dressed, and we would do PT. And then I would get a walker and we didn&#039 ; t go long distances but just enough to -- so the Christmas party was coming up. And I said, &quot ; What are you going to do for your mom and dad?&quot ; He said, &quot ; Well, I have a card and a gift.&quot ; He says, &quot ; But I want to walk in the room even if it&#039 ; s with a walker.&quot ; I said, &quot ; Okay, you&#039 ; ve got a goal. And we&#039 ; ve got time. So let&#039 ; s see if we can make this happen.&quot ; All right. Christmas party comes. Sure as gunfires, he goes, &quot ; Okay.&quot ; I said, &quot ; I&#039 ; ll take you to the door. And you walk in. And I have a chair right next to your mom and dad.&quot ; And I said reserved. I put a little reserved sign. &quot ; So that way you can sit with them for the Christmas party.&quot ; He goes, &quot ; Okay.&quot ; So the door was closed. And I opened the door. And I said, &quot ; Okay. I&#039 ; m not taking the chair in unless you feel you need it. And you&#039 ; re technically right inside the door like 10 steps.&quot ; He gets up. He holds on. I said, &quot ; Remember. Look up, don&#039 ; t look down. You want central force.&quot ; Walks in. And his mom and dad are talking and other people are chatting with them. And all of a sudden his mom looks up and she goes, &quot ; Uh, he&#039 ; s walking.&quot ; And his dad looked. He said, &quot ; What do you mean he&#039 ; s walking?&quot ; &quot ; He&#039 ; s walking.&quot ; And I&#039 ; m like, &quot ; Bye, Merry Christmas. Surprise.&quot ; She goes, &quot ; What did you do?&quot ; I said, &quot ; What did we do. I just gave him the incentive.&quot ; New Year&#039 ; s Eve I was going out with my family for New Year&#039 ; s Eve, but I wanted to stop over and wish all the guys and gals a happy New Year. And I was dressed to the nines. I was in black full dress, tails, I was like, &quot ; Okay, I&#039 ; m going out.&quot ; His aunt, who was a nursing supervisor at Saint Joseph&#039 ; s, and three of his nieces -- I graduated from high school with two of them -- they were sitting in there and were having this cheese tray with [baked champagne?] and they walk in there like oh my God, what are you doing here. I said, &quot ; I work here.&quot ; And David goes, &quot ; He&#039 ; s the one that got me to walk and he&#039 ; s the one that bathed me and he&#039 ; s the one that you know,&quot ; and they&#039 ; re like, &quot ; Oh my God.&quot ; I said, &quot ; Welcome, small world, isn&#039 ; t it, gang?&quot ; It was a Sunday morning and David always rang to get up about 7:30. I&#039 ; m like, &quot ; Okay, he&#039 ; s not ringing.&quot ; I&#039 ; m like, &quot ; Well, it&#039 ; s Sunday, let him sleep in.&quot ; And something in my inside was going like, &quot ; Mm, no. Something&#039 ; s not right here.&quot ; I said, &quot ; Are you okay, Dave?&quot ; He goes, &quot ; I don&#039 ; t feel good.&quot ; And something told me to lift the sheets and look at his feet. They were as purple as could be. I&#039 ; m like, &quot ; Oh. Okay. I&#039 ; ll be back.&quot ; I went, I said to Bev, &quot ; Uh, Dave is starting the (inaudible) process. So I&#039 ; m getting the morphine ready if we need it. I&#039 ; m going to call his parents and say, &#039 ; Take your time, it&#039 ; s not imminent, but get the family together because we&#039 ; ve started the journey.&#039 ; &quot ; And I went back in. I said, &quot ; Are you having any pain?&quot ; He goes, &quot ; No.&quot ; Said, &quot ; Okay.&quot ; So every two hours I would just go in and say, &quot ; Everything fine?&quot ; He said, &quot ; I&#039 ; m really not feeling good now.&quot ; I said, &quot ; Okay. I&#039 ; m going to start the morphine.&quot ; And we put it right in the buccal cavity. It was with dropper. It was liquid. So it wasn&#039 ; t intravenously. And he&#039 ; s like, &quot ; Can you do me one little favor?&quot ; I said, &quot ; David, if I can make it happen I got you covered.&quot ; &quot ; I don&#039 ; t want to die laying down.&quot ; And I&#039 ; m thinking okay, how else are we -- and I thought okay. I said, &quot ; Well, let me see what I can come up with to make that happen.&quot ; I&#039 ; m like, &quot ; Think quick, Bill. Because we&#039 ; re getting there.&quot ; So he goes, &quot ; You know what song I want you to play while you and I are sitting here having our last whatever time together.&quot ; And I&#039 ; m like, &quot ; Really? Madonna doing &#039 ; Don&#039 ; t Cry for Me Argentine (sic)?&#039 ; &quot ; He goes, &quot ; Yes.&quot ; I&#039 ; m like, &quot ; Okay.&quot ; So I get the portable tape player and I get the disc and I put it in. And he goes, &quot ; I&#039 ; m ready.&quot ; I said, &quot ; Okay.&quot ; Gave him a kiss and said, &quot ; It&#039 ; s been a fun experience. I&#039 ; ll remember you for as long as I live.&quot ; And he goes, &quot ; Can you just like kind of put me on your right shoulder?&quot ; I&#039 ; m like, &quot ; Sure.&quot ; I&#039 ; m not going to kill him for God&#039 ; s sake. So I just scooped him up and looked over and said, &quot ; Enjoy the ride. Is the morphine working?&quot ; &quot ; Yes.&quot ; Went to sleep. That was it. So for six months after no one was allowed to hug me on the right side. I said, &quot ; I&#039 ; m sorry, that&#039 ; s reserved for David.&quot ; LB: Sweet. WA: You know. And his parents, his dad had just retired the year before from the marine corps as a lieutenant colonel. And I thought Dad is going to be a toughie. And Dad was just the opposite. We only had one family that really didn&#039 ; t want anything to do with their son. And I called them when he started actively dying and said, &quot ; Are you going to come visit?&quot ; &quot ; Well, of course we are.&quot ; I said, &quot ; Well, someone wrote on the admission paper.&quot ; And this was how it was worded. When he kicks the bucket don&#039 ; t call us. And I said, &quot ; He has two brothers, right?&quot ; They&#039 ; re like, &quot ; Yeah.&quot ; I said, &quot ; Well, where&#039 ; s the other one?&quot ; &quot ; We don&#039 ; t know.&quot ; And he was the one that wrote it. But I decided I was going to call the family anyway. Because I was thinking legally if I didn&#039 ; t it could really have turned into a mess. So yeah. LB: So they were okay? They came. WA: Oh yeah. They were fine. They were fine. In fact they were very thankful that I did that, because they were able to get him. They made him physically come. They called him. Because he lived locally. And the dad is like, &quot ; You get over here or I&#039 ; m going to come get you.&quot ; And I said, &quot ; Please. The house is very upset. Because that was the night I had three deaths an hour apart. LB: Oh gosh. WA: He was number two. So I had three actively going at once. And my coworker, she was the best. Bev said, &quot ; You take care of the three, I&#039 ; ll take care of the other nine.&quot ; Because three of them that lived on the other side of our meeting room, party room, whatever, they had to be able to come over, get their meds, take their meds, etc. The guys on our side and our gals were more acute. They were more independent. They did their own laundry, made their own beds, got their own meds. We would give them to them out. But they had to remember to come get them. LB: And what kind of meds were you giving people then? Was this in the eighties or was it mostly -- what kind of (inaudible). WA: Primarily their HIV/AIDS but also some of them would have weight loss. There were two drugs. There was Marinol which was synthetic marijuana, but it did not give them a buzz or get them high, it only stimulated the part of the brain that said, &quot ; You need to eat.&quot ; So there were no side effects. They didn&#039 ; t get high or get a buzz. But they did get the munchies, which was okay. The other one was Megace acetate, which was a liquid, and that was to help with -- morphine for pain. Their antiretrovirals for their HIV/AIDS. And weight gain if they needed it. And there weren&#039 ; t too many. The good news is that we never really lost a lot of them in a very cachexic state. They weren&#039 ; t skin and bones. So we were lucky in that because our docs were really on top of that kind of stuff. And the visiting nurses that came out were absolutely -- we had the same nurse. But if she was off they had backup. But the night that I had the three going, I had three nurses, because one nurse couldn&#039 ; t handle three situations. And they were like, &quot ; How are you?&quot ; I said, &quot ; Oh, I&#039 ; m just jim-freaking-dandy. I&#039 ; m going home tonight and I&#039 ; m having a very stiff drink, maybe two.&quot ; And they had a therapist for us. Because once a month we would have a meeting to talk about how we felt in the midst of losing all these guys and gals. So that mentally we were okay. But I knew when Tommy died. I said, &quot ; Okay, that&#039 ; s it.&quot ; And not that we counted intentionally, but when I left the administrator said -- usually -- I was told -- because I was going to work at Saint Vincent&#039 ; s in New York. And the sister in charge of the floor said, &quot ; After five years you have to go out for a year. You can&#039 ; t stay in here all the time. It&#039 ; s a five-year term and then you have to go somewhere in the hospital for a year and then you can come back.&quot ; Well, I did it for seven. But I just said, &quot ; I can&#039 ; t do this anymore.&quot ; It started to get to me psychologically and physically. LB: (inaudible) the administrator was going to give you a number? WA: I took care of two hundred sixty-seven. And if (inaudible). LB: (inaudible). WA: Yeah, it was, it was rough. And I had joined -- they are no longer, but I had become a member of the National Catholic AIDS Network or NCAN and we would meet every summer in Chicago at Loyola University on the lake. And we would have workshops, we would have time to just share our stories. But what was really wonderful was the one year -- Cardinal Bernardin was in charge of the archdiocese at that time and very well known for being a compassionate cardinal. Really made other people within the Roman rite look kind of like why aren&#039 ; t you doing this. So he just showed up in regular clerics with his secretary and he went table to table and said, &quot ; What do you do? Where do you do it? How are you doing? What can I do for you?&quot ; I mean this is a man that could have been the next pope. And that was the night of our memorial service. So that year they asked us to bring a photo if we wanted to of someone that we lost and we loved. And they did a foot washing in the chapel. And ironically the name of the chapel in Latin is La Madonna della Strada, Our Lady of the Streets. And all the music was Taize. So the deal was the person to your right was the person that you would do foot washing with so you would wash each other&#039 ; s feet. Well, the chair was blank. I&#039 ; m like, &quot ; Okay, someone didn&#039 ; t come.&quot ; All of a sudden who comes over and sits down but the cardinal? So the cardinal and I. And that was the year that Jeffrey passed away, my best friend. He was a hairdresser. He had a very good business in Washington, DC. So Jeff&#039 ; s black-and-white photo went with me. Somewhere on my wall -- no. It&#039 ; s on my other wall right above me. I have a collage of four of the guys that I took care of that really taught me a lot. So once in a while I&#039 ; ll just look up and say, &quot ; You guys okay up there?&quot ; So far I&#039 ; m not hearing any bad things. So yeah. LB: Yeah. How old were you in the eighties? WA: Geez, well, I&#039 ; m sixty-seven now, so I would say in my fifties, I had to be in my fifties. Late forties, early fifties, I -- at this point (inaudible) twenty-six, fifty-one, let&#039 ; s see. LB: It was thirty-five years ago, honey? WA: Huh. LB: It was thirty-five years ago. WA: Yeah, what can I tell you? That&#039 ; ll be an edit. LB: It&#039 ; s okay. I think one of the things is we forget when you&#039 ; re a grown-up and you&#039 ; re doing things like that we forget that it was a long time ago when we were kids in a lot of ways, we were in our (inaudible) thirties. What did you say, you&#039 ; re sixty-seven now? You were born in nineteen -- WA: I was born in fifty-one. Rainbow Home opened in nineteen-ninety and it closed in -- LB: So you were forty, yeah. Would have been thirty-nine when it opened and (inaudible). WA: And Ozzie, who had one of the local bars, Ozzie and I were responsible for getting the first AIDS walk in Reading going. And we worked with -- oh, I can&#039 ; t. Her son, what&#039 ; s the name of the farm? Who did you -- LB: Rodale. Ardath Rodale. WA: Yeah, we worked with -- yeah. LB: Talking to Maria Rodale about Ardath Rodale. WA: To do the first AIDS walk in Reading. LB: (inaudible) oh yeah, okay, yeah. Yeah, because the farm is in Berks County after all. So yeah. WA: Yeah, because back then it was Berks AIDS Network and they were there first and then Rainbow Home came in. Yeah. LB: Yeah, it&#039 ; s all related. Everybody&#039 ; s sort of interrelated within that. Because everybody was aware of what was happening to each other and stuff. WA: Right. LB: In about nineteen ninety-three, which is about the middle of the time that you were at Rainbow House, medication really changed. And in ninety-three the worst part about the epidemic really started to fall back a little bit because there were actually drugs that could really prolong people&#039 ; s lives, it wasn&#039 ; t so much of a death sentence. Were you noticing a change then? What was it like? WA: Yeah. Well, for us it was really great because we had them longer. And for the most part they were doing very well on them. And that was thanks to like ACT UP and other organizations that were really getting up in the face of these drug companies and saying, &quot ; Why are you putting these on hold forever?&quot ; And then finally when they started to come out we noticed that our guys were doing a whole lot better. They were gaining weight. Mentally they were in much better shape. I mean there were a few that we had to give antidepressants to because it was just -- the docs wanted them on something light. I mean it was Ativan, it wasn&#039 ; t anything major, like a lot of antipsychotics, but we noticed that -- and their thriveto survive was -- they didn&#039 ; t look at it as -- they would say, &quot ; I&#039 ; m going to beat this. I&#039 ; m going to beat this because now we&#039 ; ve got the drugs.&quot ; But it took them forever to get those drugs out. It was only when people started acting up in the streets and saying, &quot ; Hey, listen, we&#039 ; ve got friends and lovers and family members dying like no tomorrow, what are you going to do about it?&quot ; LB: Yeah. Did you ever go to any of those ACT UP things in New York? WA: I did not. I didn&#039 ; t get up to New York because I was doing my own stuff down here. The one year the bishop of the Catholic diocese had an anointing service at DeSales and he said, &quot ; It&#039 ; s open to everyone.&quot ; So I took a couple of the guys up. And afterwards I said, &quot ; Um, how come you never visit?&quot ; Question mark. And he goes, &quot ; I don&#039 ; t have time.&quot ; I said, &quot ; Oh. Really? Oh. Okay.&quot ; Because here&#039 ; s the interesting thing. We had a priest in the house as a patient. And [Claude?], father, had surgery. And he got bad blood. This is before they were doing the big testing. And he was from the Diocese of Camden. So he came up, great guy, we all loved padre, and every morning I would get him up, we did his a.m. care, gave him his meds. And then he and I would go into our multipurpose room and he would do Mass. LB: So he was a priest that was at Rainbow House. WA: Uh-huh. But when I needed someone anointed [they don&#039 ; t bother?]. I had his oils. And I said -- LB: Wow. WA: Can you do a quick anointing? He goes, &quot ; Yeah.&quot ; So when he was actively dying he went to Saint Joseph&#039 ; s Hospital. Because Dr. [Crisp?] was following him. And when I went up and I said to one of the nurses, &quot ; Has he received anointing yet?&quot ; They&#039 ; re like, &quot ; No.&quot ; I said, &quot ; Well, can we get a priest to do this?&quot ; I said, &quot ; He is a priest, I&#039 ; d really like another priest to give him anointing at least.&quot ; &quot ; I can&#039 ; t get anyone. We&#039 ; ve tried several parishes.&quot ; I said, &quot ; Really? Okay.&quot ; So I called my priest at Holy Rosary. And that was monsignor. And I said, &quot ; Listen, here&#039 ; s the situation.&quot ; It wasn&#039 ; t late at night. He goes, &quot ; I&#039 ; m on my way.&quot ; And he came up and he gave him sacraments. And I said, &quot ; Thank you.&quot ; So his funeral was in Jersey, so Sister Carol Ann and I decided that we were going to be the militant Catholics at his funeral. So we go, we have our little Rainbow Home pins on. And we always pinned our guys when they left us on their [paths?]. And we would say to the undertaker, &quot ; If the family wants it, great, or if you&#039 ; re going to bury him with it, great, but please make sure it doesn&#039 ; t get tossed.&quot ; Well, I put it far enough down on the side where I didn&#039 ; t think anyone would see it. Well, the bishop did and he said to his secretary, &quot ; This is not part of the liturgical vestment.&quot ; And I just happened to be in ear range. And I said, &quot ; Would you please leave that there?&quot ; He goes, &quot ; Well, that&#039 ; s a rainbow.&quot ; I said, &quot ; Look at it from the biblical end of it.&quot ; And he left it. So afterwards Sister Carol Ann went up and she said, &quot ; You never came to visit him. Why?&quot ; &quot ; Well, we don&#039 ; t have time to do stuff like that.&quot ; She goes, &quot ; No, but there could be you and twenty-three priests on the altar for his burial.&quot ; &quot ; Well, I could have the local bishop close you down because of the way you&#039 ; re talking to me.&quot ; She goes, &quot ; Oh, please go for it.&quot ; Nothing ever happened. LB: Wow, I&#039 ; m sure not. WA: I looked at him and I said, &quot ; And this is how you teach compassion (inaudible) bishop.&quot ; And off we went. I said, &quot ; Well, we&#039 ; re probably going to get a phone call.&quot ; Nothing ever happened. Because years later when you looked at what happened with the pedophilia and they all knew about it it was like oh, look at the names of the -- mm-hmm. Years later. Even though it wasn&#039 ; t HIV/AIDS-related. LB: Yeah, I don&#039 ; t think everybody understands that there&#039 ; s five lobbyists for the Catholic Church in Harrisburg that keep LGBT-inclusive laws or other kinds of inclusive things happening. The Catholic Church pays them to keep those -- to lobby for the lack of inclusion of equal rights laws and stuff. And it&#039 ; s a shame. It&#039 ; s a shame (inaudible) happening. But so we&#039 ; re not running out of time, we still got plenty of time, but I wondered if you wanted to talk anything about how you see the relationship of HIV/AIDS and the epidemic then and what you were doing and its relationship to what&#039 ; s happening now with COVID-19. What do you think about that? WA: Well, I mean I think we need to be aware that this COVID-19 is very nasty. And we have to really look at our brothers and sisters that are HIV-positive and even with the meds they&#039 ; re immunosuppressed as it is. And this could really knock the socks off of them. They could end up in the hospitals and in ICUs and on vents. So it&#039 ; s best for anyone that&#039 ; s immunosuppressed to just stay bunkered down until this is all dealt with in a fashion where if there&#039 ; s a vaccine that the vaccine can be given. But make sure when they do the trials on this that it&#039 ; s not going to really hurt anyone that&#039 ; s immunosuppressed whether it&#039 ; s with HIV/AIDS, cancer, or anything else. And those of us that are healthy really need to check in if we know someone and say, &quot ; Do you have enough food? Do you have enough water? Are you okay on your medications?&quot ; And David, who&#039 ; s my best friend, David and I are both on the board of FACT. So we&#039 ; re very mindful of that. But I think that&#039 ; s what we need to do. I think we really need to just look out for each other and make sure that our brothers and sisters that are immunosuppressed have everything that they need and that they&#039 ; re not forgotten. LB: Yeah. Definitely true. WA: I think that&#039 ; s very very important. And we as a community need to stand strong. This is the first year we haven&#039 ; t had a Pride celebration. LB: Well, they&#039 ; re going to do it virtually, aren&#039 ; t they? WA: Yeah. So virtual is virtual. Next year we&#039 ; ll be in full swing. LB: Yeah. So we have about fourteen minutes left. But I would love for you to think about somebody&#039 ; s going to see this thirty years, forty years from now. And you have an opportunity to talk to the future here. Go into the future and tell people what you think they really should know about the HIV/AIDS epidemic. And maybe even talk about -- some people -- and I think David talked about this, but other people that I&#039 ; ve interviewed, because I think you&#039 ; re the sixth interview I&#039 ; ve done, they&#039 ; re talking about the lack of recognition by elected officials about it for so many years that it was very painful. And you have any insight on that? And then also just to tell people what they should know about this time. WA: Well, as far as the -- I think David covered it pretty good with the elected officials. That for so many years it was ignored. And it&#039 ; s like it&#039 ; s their disease, let them deal with it. Then when it started to hit everyone else okay, now we have to do something about it. I would say to the future generations look back at what everyone went through regardless of gender, gender identification, status, etc. How we as a community taught others that if you all work for the common good something good will come out of an absolutely horrific pandemic, where we were losing brilliant minds. I&#039 ; m going to share a couple of the guys as far as their names and what they did because I think for future generations the name and what they did is something that they need to know. And it&#039 ; s first names. I mean it&#039 ; s going to be first names. Andy had a double doctorate in chemical physics. Brilliant mind. Larry was the chief tie department buyer for Lord &amp ; Taylor. Rich had his own fashionwear. It was called Poshwear. Jeff was a well known hairdresser in the Washington area. David was a top-notch chef. Leo was a member of the United States Navy with honorable discharge. So he served his country before Don&#039 ; t Ask, Don&#039 ; t Tell. Let me see who else. Danny had a business, was an Irish tenor, so at his funeral I had a friend of mine who&#039 ; s an Irish tenor come in and do &quot ; Danny Boy.&quot ; These are the people that really had great lives ahead of them and sadly we lost them too young and at a fast rate. If you get a chance, future generations, to see any part of the quilt, the quilt will tell the stories. You don&#039 ; t have to know them. We had a quilt showing our fifth anniversary at Rainbow Home at Albright. And we took in an extremely high amount of new quilts. The guys from NAMES Project were like, &quot ; We&#039 ; ve never had this many at such a small gathering.&quot ; Well, surprise. Because we were making them. We did a house quilt every year. And the last official quilt showing, several of us from both Berks AIDS Network and Rainbow Home went to Washington and we were quilt monitors. And then myself and two others also did grief counseling. So that was really a fulfilling moment because we had four blocks that we were covering for grief counseling. And if I would see a family sitting there just kind of like not saying anything, very quiet, I would just gently lean down usually to the mom and say, &quot ; Do you mind if I just sit here a minute with you in silence? And then if you want, tell me a story about your loved one, tell me. Is it your son? Who was it?&quot ; And even through the tears they would come out of tears and they would just like go into this wonderful story about their son or their daughter. And that would give us a chance to get to know them other than what was on the quilt. And making those quilts for us as staff members and volunteers was a way for us to move on so that psychologically and physically we could keep doing the work that we were doing. Because we would check in on each other constantly after a death. We had a quick staff meeting to make sure that everybody was doing okay. Because our counselor would say, &quot ; If you need to talk after a death you know where I am.&quot ; So I hope that they never have to face any kind of pandemic like this, this current -- or the pandemic of HIV/AIDS. But if they do, get involved. Don&#039 ; t sit on the sidelines. That&#039 ; s it. LB: This has really been terrific, Bill. I bet you have a million more stories to tell. And I hope you do write a book about this, because I think you&#039 ; re brilliant as far as that goes. WA: I hope to do that. I hope to do that. Sometime if I can find someone who&#039 ; s willing to -- I know that Kelly is working on seeing if there&#039 ; s someone at Muhlenberg that might want to take that on. LB: To write a book about it? WA: Kelly is a friend of ours. He&#039 ; s a professor. LB: Yeah, Kelly Cannon, yeah. WA: You know Kelly? LB: Yeah. I know. Sure. You mean to write a book about it. WA: To see if someone would be interested in sitting down and working with me on getting the book written. LB: Great idea. This interview will be archived at Muhlenberg, and Muhlenberg has a lot of our -- all the artifacts and stuff. Because we kept all of the stuff when we produced the Valley Gay Press and when we produced -- at all the Pride festivals and a lot of the early Reading Pride festival stuff. Because I had all that stuff. So that&#039 ; s all in the archives at Muhlenberg now. If you have anything like that that you want to go into those archives that&#039 ; s like paper stuff or things that you don&#039 ; t know who would take care of later in life, that Muhlenberg archives will take that stuff. WA: Well, that&#039 ; s good to know. One quick note. I wrote an article about my journey with David. And it got into the NAMES Project when they used to send out the letter, the little -- and then about two years after that, the one doctor that would write back about my journey asked me if he could put that in a book that he and another doctor were writing. So I signed all the documents yes, you have my okay to do this. And then he sent me a copy and he signed it. And there was the little Post-it note. See page six. LB: Oh, great. WA: So that&#039 ; s where the article was. LB: It&#039 ; s great. WA: And somehow in one of my moves I can&#039 ; t find the book and I&#039 ; m going crazy because I&#039 ; ve got to find it. But I still have the story. So if it&#039 ; s okay I&#039 ; ll make a copy. LB: Sure. WA: And get it to you. LB: Great. You can get it to me. I&#039 ; ll send you the information. But you can send it to me right at the LGBT Community Center. They&#039 ; ll put it on my desk when it comes in. We&#039 ; re not really open right now. But I&#039 ; ll send you the contact information. And then I can get it over. Actually right now lots of people are cleaning up because they&#039 ; re stuck at home. So they&#039 ; re finding boxes and boxes of stuff that they want. And we&#039 ; re amassing a lot of those things in the vestibule, in the foyer, of our community center. Stacks of boxes there. And we found two more boxes of things. So it&#039 ; s all stuff that needs to go to -- because we don&#039 ; t want people to forget this, and one of the things they do at Muhlenberg is that they digitally make it so that people can find it online. They don&#039 ; t have to go through every single piece of paper or something. And it&#039 ; s all cross-referenced. It&#039 ; s really brilliant. It&#039 ; s going to be taking a long time for them to do this but it&#039 ; s wonderful that they&#039 ; re doing it, so it&#039 ; s a big deal. WA: Cool. LB: Yeah, it is. So (inaudible) you have anything else you want to say that you think oh, I should have added this in or -- WA: No, but thank you for the opportunity to share my story and my journey through the pandemic and this current -- and I hope that people will listen to the stories that have been told and really think about what&#039 ; s the right thing to do for anything that will come down the road. And if they know someone that is HIV-positive that they will keep them as friends and not treat them as an outcast. We&#039 ; re all God&#039 ; s children. We all deserve to be loved. Whether we&#039 ; re male, female, nonbinary, whatever you want to go by. Accept them for who they are and love them for who they are. Because love should be unconditional. Not if you&#039 ; re this I don&#039 ; t want anything to do with you. LB: Well, this has just been wonderful, Bill. I&#039 ; m so glad I got to talk to you. I&#039 ; m so glad David told me to get in touch with you. This is really a wonderful set of stories and very upbeat and very inspirational. So thank you so much. And thank you so much for all the work you did in taking care of all those people that really needed somebody. They needed a friend and they needed somebody who cared and you were there for them. How terrific of you. It&#039 ; s a really good karma. WA: Thank you. And thank you for taking the time to do this. I look forward to hearing feedback from others when this is all done (inaudible) you in person at some time somewhere. LB: I&#039 ; ve been at every Reading Pride festival. So I&#039 ; m always there and will be online watching it this year. But I&#039 ; ve also been at every Pride festival at Lehigh Valley as well. So it&#039 ; s part of my thing to have a booth at those. What will happen now is that once this is done and I&#039 ; ve uploaded it, they send the transcripts to a program at another college where they have interns who will transcribe it into writing. And then (inaudible) to see it and you can read through it. And you can see the video too. But that takes about 30 days because it takes them a while to do this. And then you can read through it and decide if there is anything that you want to change or strike or rearrange or something. But I have to say that this has just been extraordinarily terrific. So thank you so much for this. And I&#039 ; m sure everyone will feel this way. So thank you. WA: Thank you. LB: Thanks a lot. And take care, okay? Don&#039 ; t go outside. WA: You too. LB: Bye-bye. WA: Bye-bye. END OF AUDIO FILE Copyright for this oral history recording is held by the interview subject. video This oral history is made available with a Creative Commons Attribution Non-Commercial 4.0 International License (CC BY-NC 4.0). The public can access and share the interview for educational, research, and other noncommercial purposes as long as they identify the original source. 0