It’s hard to explain why Cyndie Culpeper’s case loomed so large for me. It wasn’t just that she was accomplished and funny and kind; I’ve had many patients who were all those things. It may have been because she was a kindred spirit—trained in medicine, a singer, a Jewish searcher.
Certainly it was partly a matter of timing: Cyndie arrived at the clinic right when the remarkable new medications did. After years of despair and frustration, my colleagues and I could offer more than palliative care and hand-holding—we could finally hope to significantly restore health and prolong life. If I had been writing a movie, I couldn’t have scripted it better: Enter the life-saving drugs, and right behind, bring in the patient with so much to live for.
Cynthia Ann Culpeper was born in San Francisco in the early 1960s. At age fourteen, as a Catholic high school student assigned a project on Judaism, she visited a Conservative congregation one Friday evening and was captivated by the Shabbat service.
Ostensibly to complete her school project, Cyndie interviewed the rabbi that night, then returned repeatedly with more questions for him. She resolved to convert to Judaism, which she did once she reached adulthood. I’ve heard but never confirmed the story that a nun from Cyndie’s high school once told the rabbi with whom Cyndie was studying, “I know she’ll never make a good Catholic, so make a good Jew out of her.”
Out of college with a nursing degree, Cyndie worked as a surgical nurse at San Francisco General Hospital. When she felt her faith leading her elsewhere, she enrolled in the Jewish Theological Seminary in New York City. At first, Cyndie planned to become the cantor who sings and chants the prayers at temple services. Ultimately, she pursued studies to be ordained a rabbi. But she still sang at every opportunity, including joining her mother, Mary, and a friend of theirs, Karen Schanche, at annual sing-alongs of Handel’s great oratorio, Messiah.
During seminary breaks, Cyndie traveled back and forth from New York to San Francisco, working her way through rabbinical school by taking nursing shifts at SFGH. In early 1994, on duty as a surgical scrub nurse, she jabbed her hand while cleaning a pan of bloody instruments.
“She was really scared about it,” Karen recalls now. Karen was one of the first people Cyndie called because Karen was an expert. A social worker and psychotherapist, Karen was among the San Francisco healthcare providers who founded what became the San Francisco AIDS Foundation. She had collaborated with Paul Volberding and other SFGH heroes of mine, and had worked with infected people since the days when the virus was known as GRID.
After Cyndie’s injury, she was given two AIDS tests at intervals, as was hospital policy for such incidents. When both tests, the latter in August 1994, were negative, Cyndie moved on with her life: “She knew she was exposed but not infected and did not let this exposure stop her from pursuing her rabbinical training and work,” Karen recalls. After Cyndie was ordained in May 1995, she was chosen to lead a synagogue in Montgomery, becoming the first female pulpit rabbi in Alabama.
In September 1995, Cyndie was preparing to celebrate her first High Holy Days as a rabbi when she noticed some hoarseness in her voice. After seeing a Montgomery doctor, Cyndie called Karen, who remembers the conversation this way:
“Cyndie asked me, ‘Karen, what does having thrush mean?’ And I said, ‘It means you should get an HIV test.’ I put her in touch with Ruth Greenblatt, MD, and her Women’s Care Clinic at UCSF, and she came to San Francisco to the clinic to be tested. When she got the results she called me and said, ‘I have a T-cell count of three.’ She had bypassed HIV and gone right to full-blown AIDS.”
Somebody in Paul Volberding’s office gave my name and the number of the 1917 Clinic to Karen, who gave it to Cyndie. I already knew the basics of Cyndie’s story when I walked into the clinic exam room and first set eyes on her: a thin woman of average height, wearing a blue clerical hat over her short-cropped hair. She looked terrified and incredibly vulnerable.
“Hi, I’m Mike Saag,” I said. “Could you stand up?” When she did, I hugged her. She burst into tears, explaining between sobs, “No one has hugged me since I got my diagnosis.” And so began my saga with Cyndie Culpeper.
I held her as she cried for a while, and it seemed like a healing cry. I waited to give her what I considered good news, better news than I had been able to give patients for years. “There’s a lot we can do,” I reassured her. “All these new drugs are coming and we can get access to them now.” I drew several tubes of Cyndie’s blood, sent her home with medicines to prevent pneumocystis pneumonia, and hightailed it to George and Beatrice’s lab.
When a sample of blood containing AIDS virus is placed in a lab dish in a tissue culture, it typically takes two to four days to grow, then ultimately consumes the culture cells within a week to ten days. The virus in Cyndie’s blood was the most aggressive any of us ever had seen: It tore through the tissue culture in less than two days. We were up against CUCY, one of the most aggressive strains of the AIDS virus, and we would need to throw everything at it that we could as quickly as possible.
I contacted pharmaceutical companies Merck and Glaxo and got compassionate use drugs for Cyndie per a research protocol: indinavir, the new protease inhibitor from Merck that we had first tested with Ben in 1993, and lamivudine (3TC), a new drug about to be released in the United States, which was to be used in combination with AZT (zidovudine). After a few weeks on triple-drug therapy, Cyndie was responding nicely—well enough to heartily sing the Friday evening Shabbat prayers with her congregation.
Then came new hurdles. Cyndie sought my counsel about sharing her status: Whom should she tell, and when, and how? Some friends, fearing she would be ostracized, had urged her to keep the diagnosis a secret. But she could not live with that.
Karen told me later that by the time Cyndie visited her around Thanks-giving 1995, “her sense of vulnerability had turned into an incredible strength, a resilience. She had moved from fear about the disease and about how long she had to live to concern about everyone else. She was thinking of her congregation, and she didn’t want them to feel afraid or obliged.” For three days, Karen and Mary worked with Cyndie on a statement in which she would tell her congregants that she had AIDS. Cyndie brought her planned statement to 1917 Clinic’s chaplain, Malcolm Marler, who offered both suggestions and support for Cyndie’s plan to go public.
Mary Culpeper remembers these days in vivid detail. “On December 1, 1995—World AIDS Day—I went to Friday night services with Cyndie at her congregation. She and I wore red ribbons, and people in the congregation were asking us what the ribbons were. I was thinking, ‘Oh my gosh, she’s going to go public in a month and we don’t know how people will react; she could be tarred and feathered.’ We really were living on pins and needles for that final month.”
Cyndie came back to Birmingham in December. She told me she had pretty much decided to go public with her congregation but she still had some lingering concerns: “What if they don’t accept this? What if they reject me?”
I told her I thought that was highly unlikely, and my bet was that their response would be precisely the opposite. I believed they would accept her unconditionally. Why I believed this so strongly, even in retrospect, I’m not sure; intuition, perhaps, or hope. I likened her disclosure to her congregation as being very similar to a patient coming out to his or her parents about HIV status, sexual orientation, or both. Living with the secret was so much harder day-to-day; maintaining the silence drove a wedge into the relationships.
Perhaps I felt confident encouraging Cyndie to go public because of my experience. Out of all of the gay men I’d encouraged over time to reveal their status to their parents, I only had one situation where it didn’t go well. And I knew Jewish people and their traditional, even visceral support of the oppressed, having been oppressed for so long themselves.
Cyndie’s coming out process began in the first days of 1996. As Mary recalls it, “During the first week of January, Cyndie told the president of the congregation that she was not renewing her contract for the coming year and would explain at a meeting with the congregation on Sunday, January 7. In the morning before the meeting, she asked the congregation president to come to the house and she told him why she was not renewing. And he got on the phone and called everyone in the congregation and told them to drop everything, no matter what they were doing, to come to the meeting.”
More than 150 congregation members assembled to hear their rabbi clear her throat, take a deep breath, and tell the truth she had so carefully prepared to tell in ways they could understand and accept. In part, she said this:
Yesterday we finished reading the Book of Genesis, the stories of the beginnings of our people. And now we begin the Book of Exodus; its chapters are filled with the drama of national redemption and revelation … But despite these parallels, this will be a very unique address today. It is a revelation of a different sort …
Since the beginning of my appointment here at Agudath Israel, I think most of you know that I have tried to stay out of any special spotlight. I did not want to be known as the first female Conservative pulpit rabbi in the entire state of Alabama; I did not want to be known as the rabbi who converted to Judaism. I just wanted to be known as “Rabbi” …
There is however now another title I must wear, however reluctantly; one which for the past three months I tried to imagine could not possibly be true, and one about which I can no longer be silent. I am a rabbi who has Acquired Immune Deficiency Syndrome—AIDS.
So why am I telling you this today, or even opting to tell you at all? I suppose on one level it is an emotional catharsis for me. In the past six months, some of you have privately confided in me as your rabbi what you were going through: your day-to-day struggles, or your own health issues. Whether I may have had a practical solution for you was not the point; simply talking about matters to the right person is in itself therapeutic. … And now you are letting me confide in you. I am telling you this because you are my family, and I hope to feel the support from you that a family gives, and today I need you to be rabbi for me …
As an operating room nurse, I was privileged to witness countless times how intricately our human bodies are fashioned, acutely aware of the subtle delicate balance and symbiosis existing between the flora and fauna within and on our bodies. It scares me that my body no longer retains that balance—something [that] healthy people never have to think about, but now I do a lot.
And yes, it scares me that now, God forbid, you may treat me and relate to me differently. I wonder, will you flinch when I drink from the water fountain, or from the Kiddush cup? Will you invite me over for dinner, but serve me on paper plates, or politely decline an invitation to my home? Will you discourage your children from coming near me, or stop the exchange of Shabbat Shalom cheek kisses and hugs that we have shared on Friday nights? …
Please, please, please tell me regarding all of those fears, “No, rabbi, you’re wrong. We know that AIDS is not transmitted by casual contact. We know we can’t get AIDS from the air, or a sneeze, or a kiss or a hug. We know we need not sterilize or run our dishes and cutlery fifteen times through a dishwasher after you have used them. We know we need not fear getting this disease from you because it is spread only by limited, defined bodily fluids.”
A good number of my friends across the country tried to talk me out of telling you all of this today. “You risk nothing by being silent, Cyndie, but risk a lot if you are public,” some would say … But I knew for me this was the right thing to do, because not only is this disease condition a part of who I am now, talking about it is also a part of my Jewish value system …
I thank you for allowing me to break my silence today with you, hard though it may have been, and no doubt will be at times still to come, for both you and me. May we, as a caring community, together break many walls of silence together over this most serious issue, toward tikkun olam, repairing the world and ridding the world of AIDS.
Cyndie had arranged for a social worker to be at the meeting to answer any questions. But as she told me in an email the next day, that proved unnecessary. When she finished her address, the congregation surged forward and crowded around her, adults standing in line for a chance to hug their rabbi, and children wrapping themselves around her legs.
“Yesterday was GREAT!” her email said. “I don’t think I’ve ever been so nervous in front of a group (tho I’ve spoken to greater numbers before, this was to my ‘family’). Afterwards I got 150 hugs and about 150 whispers of ‘We want you to stay’ … People came over to my house afterwards per my invitation (I had food in advance—how Jewish!!!)”
When a reporter later asked Cyndie about her decision to reveal her status, she said, “This is Torah. Torah is teaching, and that teaching is best shown by how we choose to live publicly, not by the silence we may maintain privately.”
The Friday following Cyndie’s speech, her mother Mary says, the congregation had a basket of red ribbons at the service for members to wear. And over time, the congregation raised funds to help with Cyndie’s care. The congregation’s response “was more curative than any drug she could have gotten at that moment,” Karen says now. “After that, Cyndie decided to become not just ‘the rabbi who has AIDS’ but the rabbi who was an AIDS advocate, and she was fearless.”
For about a year, Cyndie led her congregation in Montgomery and traveled every eight weeks to the 1917 Clinic, a three-hour roundtrip. But just when we had the virus on the run, one of the three drugs in her cocktail, indinavir, caused her to develop a kidney stone. That forced us to take her off that medication and put her on another one that worked about the same on her virus but had some wicked side effects. The drug, ritonavir, was available as both a liquid and as a liquid inside of a capsule. Having been told it caused a lot of gastrointestinal upset, I once took the liquid form, just to see what it was like, and was sick for two days with diarrhea. The drug made Cyndie so nauseated that once, on the highway on her way to a clinic visit with me in Birmingham, she drove past a delivery truck for Little DebbieTM baked goods, and the sight of the smiling little girl’s snack on the side of the truck was too much for her. She pulled over and threw up on the roadside.
As if the nausea and diarrhea were not bad enough, the capsule would melt away in the stomach soon after ingestion, and the foul-tasting liquid would “repeat” (reflux) back into the patient’s mouth, leaving a taste my patients likened to cherry-flavored motor oil. The capsule had to be refrigerated and taken twice daily. Cyndie complained that after taking it long enough, she would become nauseated every time she simply opened the refrigerator door, like Pavlov’s dog—except instead of salivating, she would feel like barfing.
And so began the dance we did with so many patients: Try a new medication … wait to gauge the benefits and side effects … see the patient slipping more than improving … drop that medication and try the next. Cyndie endured the treatment changes with the proverbial patience of Job, a biblical figure to whom she could relate. But with the various drugs came all the problems common to those who suffer AIDS: severe, energy-draining anemia; painful kidney stones; neuropathy; inability to pay the cost of drugs her insurance wouldn’t cover; more kidney stones; headaches and intractable nausea; immobilizing diarrhea. And yet somehow, she never lost her sense of humor—she loved it when I prescribed matzo, the unleavened bread eaten during Passover, to combat her diarrhea.
The entire 1917 Clinic staff had a natural soft spot for Cyndie. We’d all known others with charm and grace, although Cyndie’s personality and courage stood out. But I think the fact that she’d contracted AIDS while doing our work, going through the same routines we go through every day, put her in a special category. New drugs brought new hope. Even more than we realized at the time, we were pinning that hope on her to be the patient with the dream outcome: Get on the right medications, get the virus under control, live happily ever after.
Eventually, the combined rigor of being a full-time rabbi, dealing with a significant illness, and traveling to the 1917 Clinic both for scheduled treatments and unscheduled problems became too much. Cyndie resigned her pulpit and moved to Birmingham, determined to pursue treatment as aggressively as the virus was pursuing her.
Because my wife’s family had generations-deep roots in Birmingham’s Jewish community, Amy and I had a unique vantage from which to watch Cyndie’s reception there. Cyndie went right to work as an unofficial assistant rabbi at a Conservative synagogue, Temple Beth-El, and as a teacher at a Jewish day school. A gifted, natural teacher who always made time to talk to people about faith and life, she endeared herself to virtually everyone she met. She settled into the community with her precious companion, a golden-retriever-mix pup she adopted from the animal shelter and immediately named Annie Lucy—Annie because she was an orphan and Lucy (as in Lucille Ball) because she was a mischievous redhead.
Cyndie’s mother, Mary, continued to live in their native California but visited Cyndie often in Birmingham and was one of the “patient moms” with whom I became especially close. “Mother Mary,” as I came to call her, cherished every one of her daughter’s sermons, whether she was sitting in the audience listening or reading the copy Cyndie would always send her. Mary particularly loved a series of sermons called “Life’s Lessons from the Leash,” Cyndie’s reflections on how both she and Annie Lucy chafed at the restraints they faced.
“From a puppy’s perspective, movement is life, and life is worth exploring and experiencing to its fullest,” Cyndie wrote. “It’s almost as if she thinks this is a last-time occurrence and therefore she’s going to make the most of it … She resents the leash—she’s ruined three so far!—because it prevents her from engaging the world at her preferred more rapid pace.
“Ironically, HIV/AIDS can also pull at each of us with the same choke-chain force, reminding us of how precious life is; calling us to experience every moment to its fullest,” Cyndie wrote. “It can be scary. It can sometimes feel that some of our life experiences may indeed be last-time experiences …
“Both my puppy and I have our leashes in life, whether we like it or not,” Cyndie’s sermon concluded. “Nevertheless, Annie Lucy and I have both come to accept the limitations placed on us while still experiencing the world, and life, with a rich, spirited perspective.”
It was 1996 when Rabbi Cyndie Culpeper showed her congregation what AIDS looks like: her. By then, I’d been treating others with her disease for more than a decade. I’d taken on not just their illness but their lives, their dreams, their loved ones and fears. I’d eaten Ed’s food, mourned the loss of Jamie’s baby, mounted Kevin’s Crimson Tide hat on my office wall, and imagined Michael, free of pain, spinning and twirling in a place without ventilators. I could recall Andy’s pungent smell and hear David’s pilot voice explaining that Jesus would be found at the 1917 Clinic. When Jacob died, I wept openly in front of students; when Brian died, I treasured the artwork he’d left behind. I knew why Tom Blount counted not Jim’s age but the number of hours they had spent together. And I’d lost every one of them: Ed, Jamie, Kevin, Michael, Andy, David, Jacob, Brian, Jim, and hundreds more. No matter how much magical thinking I brought to each one, it was never enough. Each of them was special, and I never saved any of them. Not one.
Looking back, I know that I allowed myself the secret indulgence of loving Cyndie Culpeper without reservation because she required no magical thinking. When Cyndie arrived, science had produced tools I didn’t have before. Here, I knew, was one who would be saved. No magic needed. L’chaim!