Elliott Jones was the first case in which I wasn’t ready to give up on life-prolonging interventions, but the patient was. The second case came a few months later, in summer 2005. Cyndie.
She had been unable to hold food down for more than a year. Every time she tried to eat, she was overcome by abdominal pain and vomiting. Placing a feeding tube in her stomach didn’t help. Running the feeding tube directly into her jejunum, the middle part of the small intestine, worked better. But she still needed some supplementary feeding, which was delivered through an IV PICC line. One of the complications of long-term IV feeding is bloodstream infections, particularly yeast infections or fungemia. That’s what Cyndie developed in the summer of 2005.
Ordinarily, we would treat the infection with IV antifungal therapies, remove the line, and hope the fungemia would resolve. When I explained it to Cyndie, she was emphatic: “I don’t want you to treat me for this, Mike. I’m ready to go.”
I could not argue. She had been miserable during the last year, between the constant infusions and the frequent bouts of abdominal pain. Despite a litany of tests and visits to the GI specialists, we were stumped. We didn’t know how to relieve her suffering.
Cyndie called her mother, and Mother Mary flew in from San Francisco, followed shortly by her brother Cliff. Then came a parade of people who loved Cyndie. Some came to cling to her, some to love her, some to say good-bye. One of the visitors was Lynn, a friend of Cyndie’s since kindergarten; even though she was slipping away, Cyndie brightened visibly at Lynn’s arrival.
Among the visitors was Cyndie’s fellow clergy, clinic chaplain Malcolm Marler. He still remembers:
I walked into the hospital room to find my friend in the bed too tired and weak to respond with words. All of her life energy was focused on providing each breath and heartbeat for her body. Her mother was weary from sitting next to her daughter’s hospital bed for too long and from grieving the last 10 years knowing her only daughter would someday die from AIDS. That time was now very near.
My friend’s mom said, “Hi, Malcolm, please sit here beside the bed. I’ll move into the lounge chair.” Within a couple of minutes, she was asleep.
I spoke softly to my friend, “Are you tired?” I think she nodded yes. It wasn’t time for conversations like we had in the past as one clergy colleague to another. It wasn’t time to talk about the similarities and differences of our faith backgrounds that were always so rich and instructive for me.
Instead, it was time to be present. Time to just be. I sat down and leaned over the bedrail to hold her right hand that rested on her chest. She put her left hand on top of mine. I closed my eyes and silently thanked God for a person who has made such a difference in so many persons’ lives. I thanked God for the difference she has made in my life in particular.
Dr. Saag first introduced us in the clinic in 1995. She asked me to read the sermon she was going to give soon to her congregation. It included telling her congregation that she was HIV-positive and that she would humbly appreciate their prayers and support. She would teach them that it is okay to be cared for by others.
She was understandably frightened and yet also resolute in this sermon that this was the right thing to do. “It’s my duty to educate them about this disease,” knowing that it could also mean the end of her employment. She gained strength from the experience and became a powerful spokesperson in so many ways. Thankfully, in the days following, most of the congregation gave her the support she (and they) needed.
As I sat beside her bedside, her portable CD player was close to her ear as songs from her faith played softly. It was such a sacred time. I stayed for thirty minutes or so, listening to the music, reminiscing, and stroking my friend’s hand.
There were no words to make it all better. Her life lived has already spoken volumes.
When I look back at the speech Malcolm mentioned, in which Cyndie told her synagogue that she had HIV, I am struck by two passages. One is the sentence that I know is Mother Mary’s favorite: “I got AIDS while caring for those in need—and I still care.” The other is Cyndie’s statement about what she hoped would be the future of her disease:
Hopefully, in my lifetime, AIDS will be a thing of the past—what people used to die from in the latter part of the twentieth century. I have no intention of giving up myself. I am on medication now that is not even FDA approved, and I live by the words of my doctor up in Birmingham, where I have been going once, sometimes twice a week. He reports that this has been a record year for new drugs to combat AIDS; that we’re getting to the point where AIDS may soon be a chronic medical condition like diabetes or high blood pressure, which with proper treatment and medication need not diminish one’s quality nor quantity of life. I live every day according to those words, and the words of [Deuteronomy], “Choose life.” They’re all I have to go on.
In retrospect, I don’t recall being as prophetic as Cyndie said. But what she described did come to pass.
In the database I started when the 1917 Clinic opened in January 1988, each patient is assigned a code, a combination of letters and numbers. A four-digit number in each code indicates when the patient came to us; for example, the patient assigned 0124 was the 124th patient the clinic enrolled. Not surprisingly, most of the patients with the lower-number codes died years ago. I wept hardest at the deaths of 0006, 0039, and 0136. I have kept in touch with the mother of 0018 and the widow of 0084. I continue to marvel at the resilience of our longest-term survivors, 0061 and 0123.
The years passed, the drugs got better, and the code numbers went up. At roughly the same point in the mid-1990s, we got our 2,000th patient and a windfall of new ARVs. I felt lucky and confident. Finally, we had the tools to keep most of these newer patients alive and in good health.
Most, but not all. Not the patient that the database knew as 2236 and that I knew as singer, rabbi, friend, Cyndie.
The infection in Cyndie’s bloodstream spread to her heart, causing fungal endocarditis. The treatment of choice for this condition is open heart surgery with valve replacement. For Cyndie, there would be no surgery.
The final time I saw her, she was awake but weak. She smiled at me, squeezed my hand, and mouthed the words, “Thank you.” I couldn’t speak. I smiled back, tears welling in my eyes, and squeezed her hand gently. I leaned over, with my tears dripping on to her gown, and gave her a kiss good-bye. I turned and gave Mother Mary a long, heartfelt hug. We both knew the end was near. We simply nodded to each other, and I turned and left the room.
On August 29, 2005, around 9:00 a.m., Rabbi Cynthia Ann Culpeper lost her long, defiant fight.
In the early days of AIDS when our patients died, we autopsied as many as gave permission, hoping to better understand the virus. We did autopsies even when the pathologists were scared witless that they might be exposed to infection. We did them in an autopsy suite that, over time, had so much safety equipment added that you could have handled anthrax in there. As Cyndie’s friend, her autopsy was not something I wanted to attend. But as her doctor, I needed to be there. I hoped I might discover why we couldn’t feed her for more than a year. And as always, I hoped I might learn something from one death to help prevent another.
Standing in the autopsy suite was a surreal experience. My friend Cyndie had let me know her “heart,” her fears and feelings. Now my patient Cyndie was on the autopsy table and the pathologist was showing me the inside of her heart: there, on the aortic valve, a flowering of infection, just as we had suspected.
With the examination of Cyndie’s intestines, the mystery of her last year was solved. Almost certainly as a consequence of the ruptured colon and peritonitis she had suffered in January 2004, Cyndie’s intestines were encased in scar tissue. No wonder she could not eat without abdominal pain and vomiting: The scar tissue inhibited the normal peristalsis, the wavelike contractions of muscle that push food through the digestive tract. No surgery or intervention could have fixed this problem. Cyndie would have suffered from the inability to eat, the pain, and the vomiting for the rest of her life. It was as if she somehow knew this when she decided against treatment.
By authorizing the autopsy, Cyndie allowed her provider team finally to understand the condition that had marred her last months. Even in death, Cyndie was still teaching.
I was honored that the Culpeper family asked me to serve as a pallbearer at Cyndie’s funeral. Even during the mourning, though, my role as her doctor tugged at me. As we carried her simple casket to its grave, my mind kept straying back to images of her at the autopsy. Frankly, that was horrible.
But after the burial came the event that Cyndie had requested, a gathering of those she loved and who loved her. Jewish tradition encourages a seudat havra’ah, a private “meal of healing” served to family after the return from the cemetery to signify that life goes on. Cyndie’s gathering, though, was a bigger, noisier affair hosted by her relatives and synagogue at Temple Beth El. There were Cyndie’s favorite foods prepared by friends’ hands, and wine for rounds of toasts.
We cried and laughed together as we told each other our best Cyndie stories. Recalling how bravely Cyndie would conceal or laugh off pain, I told of the email she sent me with the subject line “SCREAMING KIDNEYS”—how, before describing the painful kidney stone condition caused by her medication, she joked that Screaming Kidneys would be a great name for a rock band. Person after person shared memories of Cyndie laughing, dancing, and singing, teaching and counseling her congregants, blessing the newborns, and sitting shiva for the departed.
In the Jewish faith that Cyndie so passionately embraced, the observance of shiva may end with a reading from Isaiah. “No more will your sun set,” it begins—a fitting benediction for someone who brought light to all who knew her.
No more will your sun set,
nor your moon be darkened,
for God will be an eternal light for you,
and your days of mourning shall end.
—Isaiah 60:20