William Aull, June 29, 2020

Muhlenberg College: Trexler Library Oral History Repository
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00:00:00 - Interview introductory material and consent 00:03:03 - First awareness of the disease

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Partial Transcript: 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.

00:04:33 - Caregiving and the beginning of Rainbow Home

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Partial Transcript: 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.

Keywords: Catholic Church; Rainbow Home; Reading PA; The Reading Eagle; The Reading Times; Wernersville; Wernersville State Hospital

Subjects: Nursing; Rainbow Home; Volunteering

00:10:38 - Illness and death of a loved one

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Partial Transcript: 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.”

00:14:55 - Joining the staff at Rainbow Home and redoing the hospital

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Partial Transcript: 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.

00:16:16 - Life and activites at Rainbow Home

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Partial Transcript: 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.

00:18:16 - Religious services and memorials

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Partial Transcript: 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.

00:19:24 - Relationships and fun activites at Rainbow Home

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Partial Transcript: 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.

00:23:06 - Religious structure of Rainbow Home

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Partial Transcript: 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.

00:27:33 - Funding and facilities for Rainbow Home / local community reception

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Partial Transcript: 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.

00:29:38 - Introduction of AZT and its side effects / Health insurance & preexisting conditions

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Partial Transcript: 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.

00:34:00 - St. Joseph's Hospital in Reading / doctors

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Partial Transcript: 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.

00:38:32 - Funeral services for Rainbow Home patients

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Partial Transcript: 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.

00:39:48 - The toll of working with dying patients

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Partial Transcript: 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.

00:44:23 - The story of David

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Partial Transcript: 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.

00:53:37 - Communicating with families of the deceased

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Partial Transcript: 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.

00:54:59 - The night three patients died

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Partial Transcript: 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.”

00:55:59 - Medications and nursing care

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Partial Transcript: 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.”

00:57:55 - Mental health for the caregivers

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Partial Transcript: 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.”

00:59:17 - National Catholic AIDS Network

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Partial Transcript: 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.

01:02:28 - Reflecting on age and the passage of time

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Partial Transcript: 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 --

01:03:52 - Starting the AIDS Walk in Reading

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Partial Transcript: 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.

01:05:08 - Changes brought by better medications

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Partial Transcript: 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?”

01:07:23 - Involvement (or lack thereof) of the Catholic Church / Priest as a patient

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Partial Transcript: 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.

01:12:42 - Relationship of HIV/AIDS and his experience to the COVID-19 pandemic

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Partial Transcript: 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.

01:15:29 - Message for viewers in the future

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Partial Transcript: 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.

01:17:24 - Sharing memories of specific patients for future generations

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Partial Transcript: 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 & 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.

01:19:21 - Viewing the AIDS quilt

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Partial Transcript: 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.

01:21:42 - Concluding remarks

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Partial Transcript: 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.