'A Healing Place': Stories From the National AIDS Memorial Grove

A Bay Curious listener asked about the history of the National AIDS Memorial Grove in Golden Gate Park. It’s a beautiful, verdant place filled with ferns, redwood trees and a stone centerpiece engraved with the names of the many people lost to HIV/AIDS and the names of their friends and family members.

To answer the listener’s question, we created a theatrical walking tour into the stories behind the memorial garden. You can attend one of the tours on Nov. 4-5. They run at 1 p.m., 2 p.m. and 3 p.m. Full information and tickets here.

KQED led in-depth interviews with activists, survivors and loved ones who are integral to the grove. Their stories are reflected in the dances and music you’ll see during the tour.

Below are excerpts from those interviews. All photos are courtesy of the people interviewed.

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John Cunningham

CEO of the National AIDS Memorial Grove

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he space is a geographic bowl. I believe it’s a holder of energy. It’s the only space in public land in San Francisco where it’s legal to deposit urns or spread ashes. It is the final resting place for hundreds of individuals. We often avail to families and loved ones a tree or some sort of plant for them so that they can create life out of death and then oftentimes return to visit.

In 1998, I learned that I was HIV positive. I contracted the virus during a four or five-year stint of addiction, which I’ve conquered, which gave me the opportunity to rebuild my life. I have two Chinese symbols tattooed on my left shoulder, which are perseverance and longevity, or harnessing the energy of our life’s events to gain strength, perspective, wisdom. Because if we don’t go down that path, we tend to go down the dark path of being victims and jaded and negative. So I’ve tried to use that event in my life for other events in my life to create positive outcomes.

After coming off of disability from HIV, I re-entered the workforce and ended up working for a nonprofit called Positive Resource Center (PRC). They joined in the efforts to create the Grove.

So many individuals were cast aside or away from their communities, their homes, their places of worship, their churches. And I believe that many have found this to be that space, that sanctuary and the circle of friends.

Albeit the gay community was significantly adversely impacted, it was not the most significantly impacted single demographic. That would have been the hemophilia community.

The hemophilia community lost so many of their own members because of the injustice of a tainted blood supply that the government knew was tainted. They hoped they would find a cure, which we still don’t have.

Half the hemophiliacs in America died in the 10-year period. It was a tragedy. And they said, “You know, if it wasn’t for you gay people, we would have gotten help.” It wasn’t right, but they were [correct] because of the stigma that was projected upon one segment of the population, i.e., gays. No one got help. And that is just a tragedy. But it speaks to how corrosive to a society prejudice and stigma and discrimination can be when you’re projecting against a health crisis.

They wanted to create their own AIDS memorial. And Jenny White, Ryan White’s mother said, “You’ve got one. It’s the National AIDS Memorial.” We worked and bridged some real chasms inside their community. The Hemophilia Circle was completed in 2017.

About 90% of those that are affected by bleeding disorders are men or boys. If you had one boy, you had three boys that all had hemophilia. And back in those days, they were probably all being transfused at the same center. So when you lost one, you lost them all. Most of the hemophilia community didn’t seek support within the gay community because the gay community was the only place that was really trying to do something. You were then alone. And your book of grieving was closed and you had nowhere to go.

So the grove was also a project that helped people open that book of grieving again and come together. On the day the space was dedicated, there were about 250 to 300 individuals representing the National Hemophilia Foundation, the Hemophilia Federation of America, the community of 10,000 and family members from across the country.

Hemophilia creates joint issues because it has blood pooling in ankles and knees. During the dedication these fathers, many with mobility issues, fell into other men’s arms crying and holding each other. When we welcomed them and stood here, it was clear they were all standing across from the circle, alone in the back. And I said to them, “We are one family. We were in one boat tragically connected. Come together, come in.” And we came together and shared.

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Dana Francis

Social Worker with hemophiliacs

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worked at UCSF at the Hemophilia Treatment Center for over 20 years. I think at the beginning a lot of people felt that the gay community gave this to the hemophilia community by donating blood. The blood products that were made to control their hemophilia infected them.

Before they knew what HIV was, the bloodmobile would come to 18th and Castro. Guys would line up and donate, but they didn’t know that their blood was infected. The gay community was one of the greatest civic players.

My role as a social worker has been to say for years, “This is nobody’s fault.” A big part of my job was to get the guys with bleeding disorders to think about this whole thing differently. Some of them were already there, a lot of them weren’t. We worked at it slowly and carefully.

It ended up being my calling in a way to do this work. I’ve always wanted to help other men think more broadly about their own humanity and their own emotional life. Nothing is going to get you into that position like having a chronic and life-threatening illness. I love helping men help themselves and help each other. It doesn’t sound like much, but it’s huge because men don’t do that.

Most people don’t even know what hemophilia is. I didn’t when I started the job. They think they’ve heard maybe that if you cut yourself shaving, you bleed to death. Which you don’t! People with hemophilia bleed longer, not faster. So if they cut themselves shaving, they’re going to be changing a Band-Aid a couple of times that day. They’re missing a protein in their blood that we have and the clots are blood, but they don’t have it. So they bleed into their joints, knees, ankles, hips, elbows mostly. They have internal bleeding.

Although the treatment is much, much better than it used to be, and it’s getting better all the time, thank goodness, a lot of older folks are in wheelchairs because their knees are wrecked. So the ramps here at the grove are even for people to walk as much as they are for chairs. That’s perfect for this community.

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Steve Sagaser

Senior Manager, Programs, AIDS Memorial Grove

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y name is Steve Sagaser. I’m 57 years old. I am an HIV-positive gay male.

A few years after we graduated from UC Berkeley, my partner Sergio died, in 1993. It was very traumatic and devastating for me. I very much wanted to avoid the topic of HIV and AIDS as much as possible. I lived in our apartment for some time with all of his belongings there. I needed that. When he died I believed that I was going to be next. The thought of being tested terrified me. If I were tested, my death sentence would be confirmed. Just hearing about HIV/AIDS terrified me.

Five years after Sergio died I finally went to be tested. I was negative. It was several years later when I became positive, while I was addicted to meth. Many people become infected while using crystal meth.

We’ve all heard the expression “sick and tired of being sick and tired.” We use that a lot in the recovery community. That happened to me. I recall walking through Dolores Park one afternoon on my way home after using meth all night long. I was seeing all the people doing seemingly healthy things — going to work, or just enjoying the park. And there I was, on my way home to figure out how to get more meth, after walking the city like a rat in the night. And I remember, in that moment, thinking about, and missing, all the wonderful people in my life before I had become a drug addict.

So I decided to endure the long and terrible withdrawal. I started going to a lot of anonymous meetings and some AA meetings. In doing that, I was able to find a little group of friends. One of those friends became my partner of 18 years.

I was exhausted from the constant chasing, of missing the people that I loved, all of whom were there waiting for me when I finally got my shit together. I always feel so blessed that they never abandoned me.

The most meaningful place to me in the grove is the Circle of Friends, where the name of Sergio’s nephew, Daniel, is located. He was only five years old when Sergio and I went to visit his family and we had taken him to Universal Studios. We never stayed in touch. But Daniel, some 16 years later, was able to find me. He’s my nephew now, and this is one of the gifts Sergio gave me.

In the Circle of Friends are the names of people who have died from AIDS or people who have been impacted by AIDS. And Daniel is certainly one of those people. His family didn’t talk about what happened to Uncle Sergio. But Daniel is very intuitive and at a young age he started putting things together. One of those reasons is that Daniel is a gay man.

I had Daniel’s name engraved in there so that it was close to Sergio’s name.

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Daniel Villa

Steve’s Nephew

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he first time my uncle Sergio brought his partner Steve from Berkeley to our house was when I was five years old. I remember — I love telling Steve this now — “Staring at you because you were so pale and so different looking from my family!” He had shoulder-length blond hair. They took me to Universal Studios that day. I don’t remember any of the trips, but I remember the car ride, sitting in the back seat, feeling that there was something between them. And at the time I didn’t call it gay, but I felt something, even though they didn’t kiss in front of me or anything.

My family wasn’t very accepting of people being gay. So they were distant from Sergio. I always had questions about him and I was left with no answers.

And then one day when I was around 14 or 15, my mom gave me Sergio’s thesis. He went to Berkeley, and he wrote a thesis about AIDS. I started to read it and there were way too many big words and phrases that I just could not understand. I put it in my closet for years.

My coming out was kind of dramatic. I called my mom after one of my first breakups, crying. And I was really embarrassed to tell her. And she said, “I already knew.” I sobbed, “Oh, you did?” She said, “Yes, don’t freak me out like that. I thought you were going to die or something!” My family then became very accepting.

Years later, I picked up the thesis again. And I noticed that at the end it said, ‘I dedicate this to my lover and best friend, Steven Sager.’ I had forgotten his name but always wondered about Sergio’s friend… I was so excited. I didn’t have the courage to actually search for him just yet. Because what if he was also dead?

I don’t know how to explain, but it’s almost like Sergio was with me. I felt very much like he was guiding me to Steven in some way, and I would think about his name a lot and that image of him when I was five. It went like that for a while.

And then one day I was driving. And I had this feeling that I’ve never felt before like somebody was pushing you to do something, where you wanted to do something. I pulled over, I wasn’t even home yet. It was like Sergio was forcing me to pull over.

I never told Steven this because this whole story sounds crazy.

I got on Google. I searched Steven’s name. The first thing that came up was an AIDS nonprofit he worked for. And I go, “Oh my God, this has to be it. My uncle died of AIDS, and here he is working in it. This has to be him!”

I called the number on the website and I was shaking so much because I wasn’t sure if it was going to be him. It goes straight to voicemail and I say, “My name is Daniel and I don’t know if you remember me, but I was five years old last time you saw me. And I’m the nephew of Sergio.” I must have been stuttering. It was so scary and exciting. And I get a phone call, like, maybe, 5 minutes later. And it was him.

I finally got to talk to Sergio through him and obviously, he was just so excited to hear me. It was magical.

I always felt loved by Sergio when he would visit when I was little. He would bring me trolls, the tiny ones with colored hair. Sergio was kind and really, really funny and witty. And it sounds like we’ve become alike, in many ways. I’ve loved hearing little stories about Sergio. But Steven was always such a beautiful person, being around him was always enough for me.

I never knew how old Sergio was when he died. Steven said he was 21, and I thought it was so interesting that I found Steven at the age of 21.

I’ve known Steven for many years now since I found him. And I’m not in a hurry to know every single detail about Sergio because every time we see each other, we talk about him or I remember this or that. And it’s just nice.

My mom and John Cunningham — the CEO of the National AIDS Memorial Grove — coordinated a surprise for Steven. By this point my mom is very accepting, she loves me exactly for who I am. They engraved Steven’s name in the Circle of Friends by Sergio’s.

When my mom was dying, I remember looking at the Circle of Friends and thinking about Steven’s experience as a caregiver, since I saw my mom’s illness from beginning to end. I never said thank you to Steven for the hard work he did.

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Gert McMullin

Quilt Conservator & Production Manager

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y given name is Cindy McMullin, but I gave myself the name Gert. I grew up in Oakland. I have been working with the quilt for 35, 36 years now. I’m the first volunteer that showed up at their first meeting. Cleve [Jones] didn’t even go to that meeting because he thought it was going to be a failure. But I’ve been working on sewing it ever since. I’ve made over 200 panels of my own and then helped thousands of people make what’s right behind me here. [Editor’s Note: This interview was conducted in the warehouse where the quilt is stored in Fremont.]

My friends were the first to start dying in San Francisco and in the early 80s before they even knew. They didn’t even have a word for it — the first term was GRID [Gay Related Immune Deficiency]. Then it was just all the boys getting sick. By the time I started working with the quilt, I was about ready to flip it out. I just needed some place to put my energies that didn’t involve going to hospitals, because I was going to hospitals all the time visiting people. I needed to do something that was an action and activist-based thing. So that’s what got me. And I know how to sew.

I was at a party when a guy who knew Cleve, said, “I think you need to call this guy.” That would have been in April of 1987. He told me about the first meeting and I made my first two panels and I brought them. There were about four other people at that meeting. It was a failure in our eyes.

I just got involved out of a selfish need for me to be able to get my emotions in check and not kill myself, you know, because it just really, really bad then and nobody knew what it was.

My friend Roger Gail Lyon said, “I don’t want my epitaph to read: I died of red tape.” When he got sick I cared for him because his lover, David Case, had to work and I happened to have a lot of money then, so I didn’t have to worry about that. I really kind of fell in love with him during those months. And after he died, I found out about all the activism he had done. I was not an activist. But he changed me. My boyfriend had said to me at one point, “Well, if anybody deserves to know how this ends, Roger does”. And so through my eyes, I would let him see an end to it. So that’s why I got involved.

[Referring to the panels] These are my boys. They’re all my friends on these walls and the people I’ve met and the things I’ve seen throughout my years keeps me here. I need the quilt as much as it needs me, if not more. Sometimes what “being involved” is being able to have this opportunity to help people a little through a bad time. I see a lot of pain in me and I put it into the quilt.

I think everybody should be so lucky to have a job like mine.

The quilt is about anger and activism. It’s about being a memorial, too. But the Grove is about hope. And so there is a big difference.

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Nan Tribuzio

Early volunteer

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y name is Nan Tribuzio and I live in Morgan, Utah. I joined the Grove in 1995.

We were at a garden show at Fort Mason in San Francisco, and there was a group there from the grove. They had bay leaves and invitations to sign the names of people that you had lost to AIDS or were dealing with AIDS. At that time, my son’s partner died. So he put his name and added it to the basket. That’s how we found out about the grove.

When my son passed, a friend of his drove over to where the grove was. It still looked like a garbage dump then. He found out they had work days that you could volunteer at, so he contacted the office and asked if we could do a memorial at one of the work days for my son. And from then on, we were there every month. We were regular volunteers.

We kept my son in San Francisco as long as we could so he could be with his friends. And when he got too sick, we decided to bring him home. The big fear was that his friends wouldn’t be able to come. We just let them know they were welcome. Most every weekend we had a group at the house. They listened to music, interacted with us. They made my husband, [Eugene], an honorary gay because he was so friendly with them and treated them just like anybody else. And they were so thankful that we included them, instead of bringing Joe home and telling them they weren’t welcome.

We were included in a lot of the activities he had going on. Got to know all of his friends. The only thing he wouldn’t let me do is come to the gay pride parade. After he passed, that was one of the first things I did. I actually marched in the parade with a group from the grove, and I said, “I’m here, Joe.”

He passed in January 1995.

When I’m in the grove, I really feel Joe is with me. Joe did maintenance landscaping, so I know he would love the grove. The Circle of Friends is where I always gravitate. And even if we visit San Francisco when it’s not a work day, we go to the Grove and always go to the Circle of Friends. If it’s his birthday, we put flowers on his name. It’s just such a healing place, and everybody there has experienced losing someone to AIDS. So it’s easy to talk about. You just have so much in common. They’ve become family.

Many times when somebody will say, “How many children do you have?” I’ll say, two, but I lost my son. And then there is just this silence and they don’t know what to say. At the grove, I can talk about it and nobody’s uncomfortable. I think that’s the most healing thing for me. I have one friend that sends me a Mother’s Day card every year from Joe.

Someday I’ll probably scatter Joe’s ashes at the grove, but I have them here with me now. I combined his partner’s ashes and his ashes. He’s always with me. It was just his birthday the other day. He would have been 61. I see his friends who are his age, and it’s like, okay, that’s what he would look like. Yeah. Turned out great.

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Tom Jenson

Early volunteer, board member, garden expert

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believe scent and movement invoke memory. Not even floral, but nature and wet ground. Or the moisture of something dank inside the redwood grove in the darkness, where there’s non-movement and the chance to be with yourself.

So when Ray [former head gardener] came to me years ago and said “I want to plant a thousand lavenders on the North Slope,” I was like, you have no argument from me because it’s bringing scent and movement.

I became a gardener because I was a child seeking love from my father. My father was an aspiring landscape architect but was an engineer who then had five children, so decided he couldn’t go back to school and become what he wanted. His life was always gardening, planting, building. And I just sat there looking at the Sunset Western Garden guide and looking at plants and learning about plants. I probably would have naturally veered that way anyway. But it was a good way to spend time with my dad since I didn’t want to dribble basketballs with him.

My partner died on Memorial Day in 2000, and by June, I was at the grove for my first work day. I said, “You have to.”

You have to understand —I was in high caregiving mode. I said to myself, “You have to go volunteer on the weekend because if you lay in bed and grieve, Monday morning, you’ll be calling in sick to work because you’ll get further and further under the covers.” So I came here.

At the time, I was not social. My partner and I were both introverts, but also I grew up as a shy child, which is why I looked through the books of flowers and plants and read those. So coming here was intimidating to me because I’m like, oh, a group of people. And it’s outdoors. It’s not like just going to the hotline for the AIDS Foundation, which I did for a while, where you have your own little cubicle and your book of answers. I’m going to have to relate to people. I just convinced myself to just come here and I know what I’m doing in terms of weeds.

When I left, I said, “I’ll see you next week.” And they’re like, “Oh, we only do this once a month.” And I was like, oh, no. I need this once a week.

I started asking this other volunteer questions. Like, what’s a board of directors? Why did they plant these? Why are these native plants in the sand dunes? I’m using the Latin names as I say those words because I read them in the book. I know about California plants, Western plants. And at some point, he said, “Do you want to join a committee?” Yeah! So I joined the Workday committee, which was designed to plan for the workdays.

Then I moved to the planning committee. We developed a very tight site committee that met with the gardener, and talked about: What are we doing next year? What are your ideas about improvements? What do you think needs to be done in three years? What should we be preparing for? Because it helps us raise funds too, letting people know something’s happening, and what’s going on with maintenance.

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Vincent Crisostomo

Director of Aging Services, SFAF

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’ve been living with HIV since 1985, and so it’s been a long time.

I am originally from Guam, and I was there for a couple of years doing HIV work. I opened the first organization funded to do HIV work in the Pacific. Then I went to DC and I was the director of field operations for a research study at Georgetown University. Then I went abroad and I lived in Thailand and did international work for about 6 1/2 years in HIV and AIDS. I was on the U.N. AIDS board for about five years, representing the Asia Pacific. Then I moved back to San Francisco.

I didn’t want my current job [Director of Aging Services, SF AIDS Foundation] when it was presented. But after a while, I needed a job so I applied. I was about to go on food stamps and general assistance. It’s been nine years now and it’s probably one of the best jobs I’ve ever had. We serve people who survived the HIV/AIDS epidemic. So people are 50, 60 and 70. I’m on a bunch of policy committees too [Human Rights Commission, Dignity Fund, State Equity for Aging committee, etc.].

Additionally, I do a lot of work with younger people, which has been really a revelation to me because I didn’t have this when I was in my twenties. Like, people, we were too busy fighting for our lives!

Just to hang out with young people and hear them talk about and also see them with each other, you know, in a way that my generation wasn’t able to do. We didn’t have the term BIPOC then. There just always seemed to be a competition going on, you know?

I’m trying to live my life. I realize that there are many people who didn’t make it through the HIV AIDS epidemic. And so, I just feel that I owe it to them and to myself to live.

My partner and I moved back to San Francisco from New York in November of 1990, and my partner at the time, his name was Jesse Solomon, he passed away on October 6th, 1991. I got a call from somebody saying that they were going to plant a tree for Jesse in the Grove. I didn’t think too much about it.

And then when I got this job, I’d bring my group of 50+ network to the Grove, for events, work days. It had been a seed that was planted in 1991. And I realized, like, my God, I never thought the tree would be here! It was really emotional. I didn’t think I was going to be here, be alive. There’s a lot of names that engraved in the Circle of Friends. I think Jesse’s name is there, and another friend, Joel.

In 2018, we got this family, Al and Jane Nakatani and their sons. My generation of folks, we raised money to engrave all the names of the whole family. Initially, they thought they could only afford to do the sons. But we put the whole family’s name there. Jane had come from Hawaii and when she saw it, she gasped and burst into tears because she didn’t expect to see her name. And she said, “This is the first time our family has been together in public.”

In 1997 I brought the quilt to Guam.

I had lived in New York in the eighties and I had this aerobics instructor who I adored. When I was on my way to Guam I stopped in NYC and went by the gym, just to see it. It had gone out of business.

Anyway, we arrived in Guam and I met this young lady and she said to me, “Excuse me, can you help me? I’m looking for my brother’s quilt panel.” I said, I’m sure we can help you, tell me about your brother. And she says, “He was an aerobics director in New York.” And he was my aerobics instructor! We became instant friends and that was amazing. There are these incredible coincidences or synchronicities, but they just kind of happen. That’s the magic of the world.

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Ellen Shepherd

Early volunteer

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‘m living in Sonoma and I’ve been living up here since 1994. I have a fairly active life, for my age. I turned 91 in May.

Our second daughter, Kathy, passed from AIDS. It began when I got a phone call from Kathy saying her boyfriend had been taken to the hospital and was very ill. They made her have a blood test and told her that he was in throws of AIDS and that she was HIV positive. She said, “I don’t know what I’m going to do. I’m leaving him in the hospital. His brother’s going to come and take care of him. I just can’t do it anymore. He’s been sick and I’ve been taking care of him for months.”

She wasn’t sick, but she was very depressed to discover that she had HIV. Nobody up here in Sonoma really knew very much about it. Nobody knew much about taking care of women anyway, because there just weren’t that many women infected that we knew about.

I think probably she would’ve been better off in San Francisco where the doctors had a little bit more experience. She stayed with us for about a year, and then she moved up to Guerneville on the Russian River. With her permission, I talked to the doctor that she had in Guerneville, and he said, “She’s one of those patients that always agrees with you when you say, ‘You’ve got to do this.’ And then she goes out and does what she wants anyway.” And I said, “Listen, she’s been like that all her life. Never argued with us, never gave us a bit of sass or anything, like some of the other kids.” But I said, “You have to go in and clean your room.” And she’d say, “Okay,” and go in and do something else entirely.

Her regime was to take her medications when she kind of got around to it, instead of as the doctor had prescribed. And she was drinking.

She was showing signs of really getting ill. Her complexion was very bad, and her eyesight was terrible. She had been driving my car when she lived here with us, but as her eyesight deteriorated, that was one of the signs that things were getting worse.

We took her back to Guerneville, and that very night she called her sister Diana and said, “I’m so sick. I think I have to go to the hospital.” This was not the first time. But this time Diana took her to the hospital in Sebastopol, and they kept her. And the next day, my husband and I went up and they essentially told us, if there’s somebody you need to notify, you better do it now.

We laughed with her. We had a wonderful evening, and she was very, very weak, but she seemed to have her wits about her. That was Sunday evening. Monday morning I got a call from the hospital that she had died.

That was right around the 4th of July. I just couldn’t come to grips with it. I don’t have any place to really mourn her. Then I remembered reading something from the time we lived in San Francisco. There was something in the Chronicle about a memorial grove somewhere for AIDS and I thought it was in Golden Gate Park.

So I called one of the daughters who was living in San Francisco and said, “Do you know anything about it?” She lived right close by. She called me back in a couple of hours and said, “There is this beautiful place there. It’s called the Redwood AIDS Memorial Grove. I think you should call them. There’s a phone number.”

I did call, and I talked to a lady there, Sue Ellen. I said, “Would it be possible to plant a tree there?” And she said, “We have a volunteer day coming up and we would like to invite you to come to that day, and then we could do it right afterwards.” And so the whole family, my son, of course, my husband and I, and all four of the girls who were left, we all came to the volunteer day in September of 2000.

We planted the tree, a little redwood tree, up in the De LaVega Dell. The tree was maybe five inches shorter than I was, so a little over five feet, which now 23 years later, is so tall you can’t see the top of it. That tree became so special and so sacred to us that both my husband and I said, “Boy, when we die, we’d like our ashes scattered there.”

It is a wonderful thing that there is a place where people are not worried about the fact that they may be a patient themselves. We just share in our grief, but we share also in our joy. We don’t go there and cry because it’s so sad, we go there because we want to work and make something beautiful and also so we don’t forget.