Caryn Berman, 62, has always been a fighter. She was among the first people working on the front lines against HIV and AIDS in 1980s Chicago.
Now Berman is in the final battle of her lifethe cancer she has lived with off and on for several years has returned, and it is terminal.
Berman is spending her last days with her wife of 36 years, Laura Cuzzillo, surrounded by the memories of the life they shared together in their Lincolnwood home. She is starting to say goodbye to friends and family.
Berman helped organize the AIDS Foundation of Chicago with William Young and Drs. Ron Sable and Renslow Sherer. She also was instrumental in founding the Hispanic AIDS Network, and she was on the city's first Mayor's Committee on Gay and Lesbian Issues, under Mayor Harold Washington.
She started the PASSAGES HIV project at Horizons Community Services, where she was also a volunteer therapist, and she was an organizer of the agency's annual Identity conferences. She worked at Travelers and Immigrants Aid, and worked with the Chicago Board of Health to develop protocols and health policies for HIV and AIDS. She also worked for several years with the Midwest AIDS Training and Education Center at the University of Illinois at Chicago.
Berman, a psychotherapist and social worker, was inducted into the Chicago Gay and Lesbian Hall of Fame in 1995. The Hall of Fame website states: "Berman's impact on the mental health of lesbians and gay men goes far beyond her own clinical work. She has taught courses on psychotherapy with gay and lesbian clients to both gay and non-gay students and practitioners in psychology and social work at the Illinois School of Professional Psychology and the University of Chicago School of Social Service Administration."
Because she was so engaged in the LGBT and AIDS movements, Berman also wants to say goodbye to the community, so she shared her thoughts about life, and dying, with Windy City Times July 31. These kinds of interviews are never easy, but they are an honor to do. In my 30 years in LGBT media, I have seen so much death, and covered the final moments of so many amazing people. The AIDS crisis has taken thousands of Chicagoans, but we have also lost many to cancer, accidents and tragedies.
And Caryn Berman has been there right in the heart of that loss. Catapulted into AIDS activism by the death of a close friend in 1985, Berman never questioned her involvement in fighting the disease on both the medical and political fronts.
After moving to Chicago from her native New York City, Berman received a masters in social service administration from the University of Chicago in 1980. This made her uniquely positioned to take part in the AIDS movement here, from both a lesbian perspective and as a public health advocate.
"Having lived through the AIDS crisis, how it affects us now, as we're aging and we're dyingat least through my filterI have less fear about dying myself because we've lost friends, in a way we accompanied them, and their buddies, and sat with people who were dying … looked after them, and it's not so foreign," Berman said. "I think our attitudes toward death … would be easier for us because we've already … been forced through the epidemic to come up with some sense of why and where does it all lead do.
"You just have to develop, in the face of the epidemic, or as an aging adult, you need to have a perspective about death and life … . I feel comfortable with it, that I'm dying. I don't feel afraid of it. … I will see a lot of people I know, and there will be a collective pooling of our energy and resources, for recycling.
"When I first got diagnosed, it was hard to believe. I had no risk. That was five years ago. It would go away for a couple months … then it came back. … all in all, [I had] five different chemo [courses]. It truly gave me a chance to get used to it. This last time came out of nowhere. I had been in remission for 20 months, we'd been having the time of our lives. Laura retired about a year and a half ago, around the time of my remission. We had been traveling and having a lot of fun.
"In June I was diagnosed and started chemo. The chemo didn't work because my liver wasn't working. They found the tumors on my liver were blocking the bile duct, therefore no chemo would be administered because it couldn't be processed by the liver … so I will basically die of liver disease, liver failure.
"I've always been like fight, fight, fight. … But it was like hearing there's no fight leftthere's nothing to fight. … That was pretty shocking … but I knew one day it would happen."
There is so much more acceptance and less fear of LGBTs, and HIV and AIDS, than 30 years ago, the couple agreed. "Even my experience going into the cancer center as a lesbian, I was totally out and never experienced any issues," Berman said. Cuzzillo added said she was never questioned as Berman's primary support person.
The couple was married in 2010 in Iowa after that state legalized same-sex marriages. "I never wanted to do a civil union, I thought it was silly," Berman said. "I don't need the government to give me window dressing."
Cuzzillo said they were going to hold out for federal recognition and Illinois marriages, but then Berman was diagnosed with cancer in 2009. "We said, we're not going to wait … we're going to elope to Iowa."
They had a double ceremony with a gay male couple who they knew in Iowa. The person who performed the ceremony was Polk County District Court Judge Robert Hanson, who wrote the opinion in favor of marriage equality in Iowa. His ruling was stayed pending an appeal to the state Supreme Court, where it was eventually upheld.
When asked about how they maintained a 36-year relationship, Berman sweetly sang a bit of a song and they said that every relationship has its good times and bad, and that they worked hard through any difficulties. "We didn't have many role models," Cuzzillo said. "We just made our own way, and figured out how to love each other, and compromise when we needed to."
"You need some baseline assessment of 'Am I in one that I should stick to?' Once you've answered that, then you stick to it, no matter what. But I wouldn't want people to stick to bad [relationships]," Berman said.
Reflecting back on her activism, Berman said it was "exciting" and "defining" to be on Mayor Washington's gay and lesbian committee, and she met Washington several times. Berman said she saw people as individuals, which is why she was able to work with gay men at a time when there were more gender divisions in the community.
Cuzzillo said she remembers that a lesbian once questioned Berman about working on the "men's issue" of HIV. "That offended me to the nth degree," Berman said. "It was just so ignorant of what disease really is and how it works, and what the trajectory was bound to be," Cuzzillo added.
"The hard part was the racial divides," Berman said. "Here we are on the mayor's committee," and then there were still racial divisions in the city.
"I think the future is with young people, because they don't care [about differences]," Cuzzillo said. Berman added: "It's been such a thrill to see the marriage bills pass, or be overturned, it's like no way did we think in our lifetime we would see this … it never occurred to us [in the 1970s and 1980s]."
"What's sad is the larger truth is lost," Berman said. "At the same time you're seeing gay rights sweeping [the country] and support legislatively, you're also seeing the whole breakdown of a woman's right to choosemore and more restrictions. It feels like these things should be proportional and not inverse. The more people that understand love, and the privacy of love, why don't the same people understand the privacy of decisions over your own body? Especially decisions about life and death. It all to me goes the same. … I don't see why people don't see this all on a continuum of individuals … how did things get so backward?"
Being Jewish has been a big part of Berman's life. "I love being Jewish, I very much relate as a culture. … it's a happenstance at birth, I enjoy it, it's familiar to me. … I don't think it's any better than any other religion," she said. "I feel very good about God, I don't feel God is in charge of everything. There is no control, folks. The universe has been unleashed. … I think there's a universal spirit that had something to do with unleashing these forces. I feel comfortable that when I die, I'll join it, this great pool of energy, I'll be recycled. I don't know if I'll retain my own identity, or just be stirred in the soup. I think we're part of something really big, and we're all connected. I like the concept of the collective unconscious, the idea that there's a part of our consciousness that's totally unconscious that's hard-wired and connects us all."
Berman said she "feels good about dying. I'm not afraid. … I'm worried about pain … that's why I am in hospice care. It was a very symbolic moment, when I did have pain and I had to ask for the morphine. Knowing it meant things were getting beyond the capability to endure."
Stroking Cuzzillo's arm, Berman added, "The part I don't like talking about is being separated from Laura, that's the real fear, us not being together. That's just terrible. … Laura is going to suffer for a long time, she's suffering already seeing me in pain. She's suffering because she can't help me, and because she knows she's going to be alone."
Family and friends are visiting the couple in limited interactions, so she can conserve the energy of her final days. She's asking her closest friends, her "usual suspects," to be there in her final moments, and to be part of the Jewish ritual of purifying the body.
Asked for her final advice for the community, Berman added some wisdom, mixed in with humor: "Have a good time, enjoy your life, don't put it all off for tomorrow. What's the point of all the activism if you're not gonna have fun? Do your business now. Fix your communications now. Be honest now. Be real, be a mensch. Don't forget to be loving. Fighting for the greater cause doesn't give you an excuse to be an asshole."
For the complete video interview, see www.youtube.com/watch .
In 2007, the couple sat down for an interview with the ChicagoGayHistory.org project at chicagogayhistory.org/biography.html .
Those who know Berman and want to send a message can do so via email at email@example.com .
Video by Tracy Baim at the link: www.youtube.com/watch .