Five years ago, Nelly Gutierrez was devastated by the news that she would need to undergo dialysis for her failing kidneys three days a week for the rest of her life. The Sylmar resident, now 63, also suffers from heart and lung disease, she told the Journal. But it was her diabetes that had wrecked her kidneys and caused her body to swell painfully. A kidney transplant wasn’t a sure thing, and the three-hour dialysis sessions would leave her weak and uncomfortable.
After receiving her diagnosis, “I stopped taking my medications — I just wanted to die,” Gutierrez said in the text interview that accompanies her photograph in the exhibition “Right, before I die,” which will be on display at the Museum of Tolerance (MOT) from Aug. 15 through Sept. 30. “I cried every day and didn’t want to do anything anymore. I gave away all of my stuff.”
A year later, Gutierrez prayed to God for help as she struggled with wanting to end her life. Soon thereafter, she got the idea to volunteer at a senior center, working with elderly people also facing issues of life and death. The endeavor gave her own life meaning, even as her body continued to fail. “My joy is to see people smiling and to have the courage to go on with their lives,” she told the Journal.
Gutierrez is one of 20 patients profiled through photographs, text interviews and handwritten letters in Andrew George’s “Right, before I die”; she is the only one of his subjects still alive. In her portrait, she appears dignified and well dressed, with a bandage from a dialysis treatment peeking out from behind her blazer.
The subjects also include Sarah, who appears to be in her early 30s and is bald from chemotherapy yet smiling faintly. In her text interview, Sarah declares, “Time is so precious. God, it’s precious.”
Then there is Michael, a former junkie who went on to found eight Christian missions in Mexico, where he regularly provided food and supplies to the communities. “I can walk out of this earth with my head help up high and just go the way I came, naked,” he says in his interview.
Press materials for the exhibition note that the show is intended as a “counterpoint” to California’s End of Life Option Act, which went into effect on June 9. The law gives terminally ill patients diagnosed with six or fewer months to live who have the capacity to make medical decisions the right to seek a lethal prescription from a physician. Most Jewish groups have opposed the law because of the concept of pikuach nefesh — the mandate to protect human life.
“At its core, the exhibition speaks to the importance of human dignity, which is an essential theme of the Museum of Tolerance,” Liebe Geft, director of the MOT, said in an email.
Dr. Ira Byock, a leading expert in palliative and hospice care who has vociferously opposed doctor-assisted suicide, helped arrange for the exhibition to be sponsored by the Providence Institute for Human Caring, where he serves as chief medical officer. “This is our attempt … to open a window into the lived experience of illness and dying,” Byock said during an interview in his Torrance office. “What you find … when you look at these pictures and read some of the quotes is the surprising fact that, first, these people are living during the time that we would consider them to be dying. In addition to the struggles and the sadness and all of the challenges that death represents, this sense of well-being … is also possible.”
George, who supports the End of Life Option Act as a means to offer an additional choice to the terminally ill, was not considering politics when he set out to create his exhibition in around 2011. Rather, he was prompted to embark on the project after attending the funeral of a friend’s mother five years ago. “She was so loved by everyone, and I wondered, how do you create that effect during your lifetime?” George, whose studio is located in West Los Angeles, said in a telephone interview. “I thought this woman had figured something out that we can all learn from. So I wanted to make a project about people [like her].”
George chose to focus on seriously ill and dying patients who had overcome the fear of death and could impart a degree of wisdom about life. To find potential subjects, he approached officials at dozens of hospitals and hospices around Los Angeles, all of whom turned him down. But in 2012, Dr. Marwa Kilani at Providence Holy Cross Medical Center seemed to understand his goals and agreed to refer him to patients who displayed a particular kind of grit.
Whenever he heard from one of these patients, “I would drop everything and drive an hour to the hospital, sit with them for four or five hours and ask the 37 questions I had come up with,” George said. Those queries included, Do you have any regrets? What brings you joy? And do you experience love?
Yet George eschewed asking his interviewees to disclose their illnesses, religious background or past professions. “I wanted to cut through anything that might create a barrier between viewer and [subject],” he said.
To shoot the patients’ photographs, George used a medium format Hasselblad camera, “which captures every hair and imperfection,” he said. In his photographs, each person’s head is life-size, “so it’s like you’re looking through glass and actually viewing the person.”
The project wasn’t without challenges. “These people were often withered; they weren’t presenting the best of themselves,” George said. Further, as the photographer, he struggled to “find something beautiful” in the patients amidst the hospital’s fluorescent lighting and bland décor. “I strove to celebrate the soul of each individual,” he said. “In their own way, each of my subjects was enlightened.”
George and Byock — who traces his concern for the value of all humans to his Jewish background — will speak at the show’s opening reception at the MOT on Aug. 18.
“I’m going to talk about the importance of this cultural moment, in which the baby boomers have become the silver tsunami,” Byock said. “In our culture, we are living with people who are older than ever before in human history.
“So many people are living quite well, and often for many years with diseases that would have killed them [in previous generations]. Yet culturally, we have not developed to make full use of these unprecedented changes. … This exhibition is another opportunity for us to grow the rest of the way up.”
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