Toward Healing The Soul As Well As The Body

Rachel Ettun learned life lessons from her dying daughter.

‘Trying to create a healthy way of living with disease’: Rachel Ettun, at center, founder of Haverut.

After her heart was broken, Rachel Ettun committed herself to transforming the grief she felt on the loss of her 11-year-old daughter, Ruth, in 1997, to help heal the hearts and spirits, if not the bodies, of others in pain.

Within a decade she founded Haverut, an Israeli non-profit that provides a unique therapeutic approach to both caregivers and patients in striving to transform medical facilities into healing centers for the soul as well as the body.

Ettun, a leader of the spiritual care community in Israel, is a family therapist whose specialty is training doctors, nurses, therapists and other caregivers to “see the person as a whole in body, spirit, heart and soul.”

Among the most effective tools in encouraging those who are ill to find meaning and acceptance in their lives, she believes, are music, art, creative writing, personal prayer and open conversation. The results are often life-affirming, even for those facing death. 

I had the privilege of meeting and speaking with Ettun in Jerusalem, where she lives, several weeks ago. I came away inspired by her story, her vision and her success in empowering medical personnel to “see the person behind the disease,” and helping patients regain the sense of self that is sometimes lost during chronic illness.

Haverut, loosely translated, means fellowship, ending with “rut” to honor her daughter, whose insights into living fully throughout her lifelong battle with Cystic Fibrosis form the core of the organization’s mission.

“She taught me so many things,” Ettun recalled. “A forever gift I received from Ruth was to not panic but to live, really live, with mindfulness. To appreciate that realizing our own vulnerability makes us stronger.”  

Soft-spoken and articulate, Ettun shared with me how through caring for her seriously ill child, she observed what was missing from the traditional medical approach – and came to realize that healing can take place even as the body declines. 

Caregiver and patient: Both benefit from programs that strive to make medical centers healing centers.

Inner Strength Can Conquer Fear

Ettun’s life’s work grew out of the belief that the big questions in life, including those surrounding end of life, must be confronted, not avoided. 

As a young woman, she planned to become a psychologist. But when the second of her five children, Ruth, was diagnosed with Cystic Fibrosis as a baby in 1985, Ettun ceased her studies and focused on “trying to create a healthy way of living with disease.”

For the next 11 years, she devoted herself to, and learned from, her remarkably thoughtful and insightful daughter. Through Ruth’s frequent hospitalizations, mother and daughter developed a method of allaying their fears by making lists together of things to be grateful for, with Ruth drawing pictures and writing poems.

One poem, written together when Ruth suffered a collapsed lung at the age of six, was based on what can give us strength when we are afraid. It cited doctors, nurses, family members, favorite games and colors, and they called it Koach (Strength.) 

“Ruth told me she came to understand that we can use our thoughts to transform our fears, “ Ettun told me. “I taped the poem over her hospital bed and when the head doctor dealing with her case came in and read it, he cried. That’s when I realized how bad the situation was.”

When Ruth was 8, her illness was so severe that doctors felt only a lung transplant, though experimental and enormously expensive, could save her. It would involve mother and daughter coming to the U.S. for many months, leaving the rest of the family, and raising a million dollars for the risky, complex procedure.

Torn between the desire to save her child and the need to care for the rest of her family, Rachel and her husband were encouraged to seek the advice of a renowned Jerusalem rabbi who told them, “whichever way you choose is the right answer.”

“That was a profound response and gave us so much freedom,” Rachel said. In the end, they decided to explore the transplant and visit the Children’s Hospital of St. Louis, where the doctors spoke with her on a level she had not experienced in Israel. 

Back home, doctors had sought to dissuade Ettun from going forward with the lung transplant for Ruth. Their advice was practical, suggesting that the odds were stacked against success. So she was taken aback when a doctor in St. Louis asked her questions that went beyond medicine, like “what gives you strength?”  “What are your spiritual beliefs?”

“We had beautiful conversations,” Ruth said. She realized that the doctors’ interests included the whole person in determining if Ettun and Ruth were candidates for the highly selective program.

In the end, Ruth was accepted. It was the doctors’ approach that helped convince the Ettuns to go forward with the transplant. 

Ruth survived the grueling procedure and lived for another two and a half years, developing her love for painting and writing – a story she wrote won a national prize – before succumbing to her illness.

Exploring language that empowers: Prof. Michael Fishbane offers rabbinic and chasidic sources as tools for

caregivers and patients to “go deeper into emotions and open them up to a fuller world.”

‘Something New Emerged’

Toward the end, Ettun found it most devastating “to know that you have to let go” of your child. But after Ruth died, “something new emerged in my life,” Ettun said, a desire to bring a spiritual component to the medical system. She envisioned a community of caring that helps patients and families deal with their struggle with fullness, humility and acceptance – “a community that cares for all of its parts without fear.”

Ettun delved into existential philosophy and writings about trauma while studying to become a family therapist with a special approach to healing. Two decades ago she came to the U.S. to learn about spiritual care and chaplaincy, and, with the help of UJA-Federation of New York, upon her return home she founded spiritual care in Israel.  

Haverut was launched in 2007, offering one-on-one and group work with patients and families in medical facilities around the country, using art, poetry, music and other healing tools. Haverut sponsors workshops, lectures, retreats and conferences for doctors, nurses, therapists and creative artists.

An added component to the training over the years has been exploring how Jewish texts and teachings address life’s crises. Michael Fishbane, a distinguished scholar and professor of Jewish Studies at the Divinity School of the University of Chicago, has been working with Haverut for many years. He leads sessions with caregivers on how rabbinic and chasidic writings, from the Book of Job to medieval poetry, deal with “primary emotions like fear, pain and tears,” Fishbane said. “These resources offer an ability to find a Jewish language of expression. It can empower both caregivers and patients to go deeper into their emotions, opening them up to a fuller world.”

He describes Ettun as “a remarkable woman who remains spiritually attuned and hasn’t lost the feeling of loss. She brings enormous compassion to her work in teaching people to have the courage to live in that dark space, and do it with dignity, in everyday moments.”

Ettun today leads Rikma, Haverut’s training program for certified spiritual caregivers. She remains committed to expanding her vision of the concept of refuah shlaima (complete recovery) so that it includes the soul as well as the body. And she continues to be inspired by the words her daughter, Ruth, wrote in her diary at the age of 10: “The strength of my body may be small … but the strength of my heart is renewed.”

For further information on Haverut: www.haverut.org.il/language/en

Correction: My last column, “A Bond That Transcends The Grave,” made reference to family members of Yaakov Menashe, the fallen soldier, who live in Turkey. In fact, they live in the U.S. 

I regret the error.