"A Wholeness That Grows Out of That Which Is Lacking"

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Sitting with the patient, I brought in a nesting doll, separating each doll and lifting the layers of self that surrounded the smallest version of herself within. We spoke about layers. Layers and walls we put up to protect ourselves. Layers that hide the things we are afraid for anyone—worst of all, ourselves—to see. Layers that embrace and comfort and hold us together.

Within each shell of the nesting doll, we met the different women who make up this one woman. The woman who was raped. The woman who took back control, getting rid of that self to replace the wounded girl with something better and stronger. The woman who hates herself. The woman who blames herself. The woman who lives with fear, guilt, and hopelessness. The woman who wants to live for her family and shield them from pain—who still wants to hold onto hope. The woman who cannot imagine how that could happen. And on and on.

With the fullness of the nesting doll displayed, we gave witness to her story together. The hero and villain, the eating disorder that shielded her from trauma and that continues to traumatize and ravage, and her identities—simultaneously hidden and yearning to be seen. And the constant refrain: hospitalizations. More weight lost and gained. More self gained and lost.

What is left? That small child within the nesting doll– the figure at the core.

“Who is she?” I ask. “What would you want to say to her if you could speak to her right now?”

“I feel sad for her,” she answers. “For what I have done to her. I used to hate looking at pictures of myself as a child because I thought they were ugly. Now I just feel all of the pain at what has happened since then.”

Personal Journey

I began providing spiritual care to palliative care patients with anorexia nervosa 2 years ago. I have since met regularly with more than a handful of women. Most have been Christian, Jewish, and agnostic Caucasian women in their mid to late 20s. As a palliative care and behavioral health chaplain, I met them at a transitional point in their care, when they had already been battling 15-plus years of their nightmares, with histories of inpatient hospitalizations and outpatient eating disorder treatment. They each had robust interdisciplinary team support, followed by psychiatrists, psychologists, nutritionists, and palliative care physicians.

I am in a tradition as a behavioral health chaplain. One of the major figures in the founding of clinical pastoral education was Helen Flanders Dunbar, MD, PhD, who was a pioneer in psychosomatic medicine and served on the clinical faculty at the same institution where I now work.

Now, either these patients, their families, or their medical team were asking the hardest questions to answer: “When do we know we have done all we can do? When is it time to focus on comfort and closure rather than on court-ordered feedings and medications? Does that point even exist at all—medically, psychiatrically, ethically, religiously, morally? And what does family and support look like if and when that moment comes?

As a chaplain, my job is not to answer these questions, but to hear them—to give them dignity and voice, sometimes to advocate with staff for them, and other times to mourn with patients and families that these questions are even being asked. I utilize clinical spiritual assessment models, with an eye toward 1) giving the patient a nonjudgmental space to tell their story of suffering, 2) helping them access their own spiritual resources, and 3) providing a supportive presence.

Although spirituality can be synonymous with specific religious support and prayer, in the field of chaplaincy, it can also be expansive to diverse avenues of meaning-making, fostering well-being, processing grief, meditative interventions, and much more.

What is Spirituality?

The definition of spirituality, as determined in the report of the Consensus Conference and published in the Journal of Palliative Medicine is “the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.”¹ With this definition in mind, I have found that spiritual care is often central to caring for patients with anorexia nervosa and their families, especially those seeking palliative care.

Palliative care by name is rooted in palliation, namely providing relief from pain and supporting dignity. This does not have to signal discussions about end of life specifically, but it can focus on supporting a person in accessing their sense of meaning, connection, and self in the midst of their suffering. From the Latin word palliare, which means “to cover or cloak,” the etymology of palliative care points to the act of covering (often of symptoms).

Like our nesting doll, it can offer protection and relief; and it can also cover barriers as a means of revealing unseen layers of self and connection. There is much discussion about palliative care for psychiatric patients among medical, palliative, and psychiatric professionals, which extends beyond my personal expertise. My goal in writing this piece is to give a window into the spiritual lives of patients with anorexia nervosa and their loved ones.

It can be unbearable to love and care for someone when all you want to do is say, “Just eat! Why can’t you just choose to eat?” I have heard multiple parents, siblings, and loved ones processing the same theme: “We will maintain hope and fight for her, and we also want to prepare ourselves for a direction we hope this isn’t going. We wouldn’t wish this pain upon our worst enemy. Is she still in there? How do we know what’s the illness and what’s her?”

It is paralyzing and heartbreaking to know both that you do not want to die and that you cannot imagine living in your current suffering—a suffering that seems impossible to overcome. This is the reality of most patients I have encountered. They share, “I never wanted an eating disorder. I developed it out of necessity.”

This may be in response to a trauma or a loss, and many patients can pinpoint exact initial moments of disordered eating thinking and behaviors, even as young children. Sometimes there are co-occurring mental illnesses like obsessive-compulsive disorder, anxiety, and depression, among others. When psychiatric and medical needs overlap, it becomes increasingly complex, if not confusing.

Reframing Faith

A patient once reflected with me on the dynamic of control and their faith. They said their eating disorder helped them “survive and disassociate from my trauma history.” It gave them a way to be “outside of my body without having to live in it.” This gave them control, security, and safety like no one else in their life could provide. As a religious person, they felt that faith necessitated turning over control to God, which they worked hard to do. But as their eating disorder worsened, they felt God was not making the right decisions. “How can I trust God if God is giving me more than I can handle?”

It was terrifying for this patient to imagine letting go of the eating disorder because it was their only means of control. And yet they felt powerless: “None of this was a choice.” Within their faith system, we explored what it would look like to turn the question back to God—even to challenge God. They said, “God, I need You to handle it. Don’t give me what I can handle—give me what You can handle, and handle it for me.”

Spiritual themes of guilt, self-hate, shame, and fear can eat these patients up inside. To reframe and find connection, I utilize various spiritual care interventions, all of which include genuine awareness of the person’s very real pain and fear. For example, I have worked with patients on exploring how it feels to say a prayer over their feeding tube. Using the words from Psalms, “The eyes of all look eagerly to You, and You give them their food in its proper time. You open Your hand and satisfy the desire of every living thing.”

What does it look like to feel satisfied? What does it look like to accept God’s sustenance? And how do we feel when we cannot accept that sustenance? What fears, hurt, fury, and guilt does the concept of this prayer bring up? Some have shared feelings of being unworthy—of having sinned. Others of being abandoned by God, singled out or cast aside from access to truly feeling that sustenance. And sometimes the process of prayer is grounding, naming the human yearning and challenging God to intervene in her care.

Forgiveness

Another common theme I have heard is forgiveness: of self, of family, of the disorder, and of God/a higher power. “I have no friends anymore,” a woman said. “I don’t want anyone to see me like this.”

“Everyone used to want to be just like her,” the woman’s loved one reflected. “She was so passionate and cared for everyone else. I don’t know what happened.”

The extent of loss, both literal and ambiguous, is profound. How do we forgive ourselves for an illness? Is there blame? For many, the line between being a helpless, blameless victim and losing agency and a sense of self is blurry. There is no magic cure.

But what we can do is encourage love. Love of self. Love of family. Love of something greater than ourselves. And in the context of trauma and illness, love—whether of self, another, or God—often begins with forgiveness and acceptance.

Hope

So, is there hope, and if there is, where is it? I have personally found that the teachings of Rabbi Yitzchak Hutner speak volumes in this context and expand to any person facing chronic suffering. He writes in his commentary on the Bible entitled Pachad Yitzchak regarding a person’s identification with the biblical story of the Exodus from Egypt:

“A person is obligated to tell the concept of redemption specifically as a wholeness that grows out of that which is lacking. In the same way the storytelling is [framed as] an answer to a question...One in intellectual pursuits knows that sometimes the answer needs the question more than the question needs the answer.”²

Wholeness and Healing

To see ourselves as stories of wholeness growing out of that which is lacking requires that we accept what is lacking without judgment. We do not need to fix or fill whatever is lacking, or to pretend it is not there. It is there and may always be there.

And there is a wholeness that can still grow. This is true for a person battling an eating disorder in its early stages or even, God forbid, at the end of life. It is also true for every one of us—the reader and the narrator. The lack for a person with an eating disorder is not the expected BMI measurement, but a spiritual, emotional, and psychosocial pain and loss.

Over the years, I have cared for many patients and congregants at the end of life. Sometimes values change at the last minute. Bridges are built that seemed impossible to ever imagine. What I have seen most, though, is the need of the human spirit to have dignity, love, and respect. Hope can give a person each of these. Not a baseless hope or sense of “being in denial,” but the hope that even with one’s final breath (or their loved one’s final breath), a wholeness can grow out of that which is lacking.

When the absolute hardest questions a person can possibly ask are being asked, the answer may not be an answer at all—rather, presence, a listening heart, and giving voice to the many selves that compose our unique nesting dolls. My prayer is that when I or anyone serving a patient or family battling an eating disorder faces the lack—that we have the courage to support those who are suffering in finding their own sources of dignity, love, and respect.

Rabbanit Thomas-Newborn is a board-certified chaplain at New York-Presbyterian Columbia University Irving Medical Center and Morgan Stanley Children’s Hospital. She specializes in Behavioral Health, Palliative Care, and Critical Care chaplaincy. She is the president of Neshama: Association of Jewish Chaplains and a member of the spiritual leadership at Congregation Netivot Shalom in Teaneck, New Jersey.

Author’s note: Patients mentioned in this article are composites, with specific details altered to protect anonymity.

References

1. Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. J Palliat Med. 2009;12(10):885-904.

2. Yitzchak Hutner R. Pachad Yitzchak.Ma’amar. 17:2,4.