The Grace of Phantom Pain

I dread mornings. I wake to a world without my daughter in it. Jess died nine years ago. She was twenty-six. 

Many bereaved parents know this particular pain. Throughout the day, we may not consciously think of our children. There is no need. They inhabit our minds the same way our brains tell us to breathe or blink. They are always here.

Barbara Eden lost her 35-year-old son, Matthew, to a heroin overdose in 2001. Ten years later, she wrote that although she still finds joy in life, part of her will always be missing. “Matthew is never out of my mind,” she says, “and the pain of losing him and of missing him doesn’t get less. I still think of him every day and dream of him every night.” 

Naps are slightly different. A short doze may leave me a tad hazy for a few seconds when I wake. That is when the full impact of my loss slams into me. My first reaction, my most frequent lament, is torn out of me in a torrent of pain:  Dear Lord, I want to hold her in my arms again! Her absence is my cry. 

Protestant theologian Helmut Thielicke suggests that such moans are the deepest purpose of prayer. Our petitions are secondary to this act of communion and relationship with God. “If I do nothing else but say from the bottom of my heart,  ‘Dear heavenly Father,’” he writes, “the main thing has already happened.”

In a similar gasp of sudden anguish, Friedrich Rückert wrote the poem, “Once I held the reality of you,” after the deaths of his two youngest children, Luise and Ernst. It is a rough sketch, unfinished and raw. He holds in his hands two pastel portraits of his three-year-old daughter and five-year-old son. Each word is redolent of loss. The paintings are a poignant reminder of when they were alive, within arm’s reach; and a bitter confirmation that he can no longer hold them, save in a pair of two-dimensional images. 

Once I held the reality of you,
young and alive;
unforgettable, a dream swept
away too soon.
We need irony to endure the
dictates of heaven:
these will have to do for now,
portraits of you.

Portraits (or photographs) may provide much-needed testimony of our loved ones’ lives. Visiting a grave offers a similar sense of solace and communion in our difficult adjustment to a world in which they no longer exist. For this reason, the seemingly jarring and morbid sentiment of irony in Rückert’s poem is actually quite useful. 

Phantom Limbs

I learned that my daughter died on January 18, 2015. Exactly one year later, to the day, German pop star Madeline Juno recorded her own cry of desperation and sorrow, “Phantom Pain.” In her lyrics I find a precious gift: the peace only communion of grief offers. “Where you’ve been wears your face,” Juno sings. “My heart has phantom pain.”

Comparing the continuing presence of a dead loved one to a phantom limb is more than metaphor or analogy, writes philosopher Matthew Ratcliffe with the University of York. He says that the two types of experiences are structurally similar in significant ways. Those close to us are part of our physical and emotional spheres. They help shape how we engage with the world just as our bodies interact with our physical surroundings. In this way, he adds, “the boundaries between bodily and interpersonal experience are indistinct.” 

Catherine Fullarton with Emory University builds on this idea, adding that once our situations change, our bodies are stymied, unable to execute habits and expected functions. Our loved ones are not there. Grief and phantom limbs, she says, are not part of a process of recuperation, but a transformative experience as we adjust to our new relationship in absence. But this doesn’t make it any easier.

Studies over the past two decades demonstrate that phantom pain sensations represent measurable nerve activity that can be positive or excruciating. For example, phantom limb sensation, as it is called, is helpful in controlling a prosthesis; phantom limb pain, on the other hand, is debilitating. Neither is psychosomatic. They require “neuronal network reorganization,” according to Kassondra Collins with the University of Tennessee Health Science Center. 

“Phantom limb pain is horrible,” says Paul Cederna, chief of plastic surgery with the University of Michigan. Our brains are wired that way. When we were whole, our brains mapped the limbs or other parts of our bodies; now there is no limb to correspond with the nerves. Our nerve fibers are looking for something that no longer exists. Finding nothing, Cederna explains, a neuroma forms, or a ball of raw nerve endings. Our brains don’t know to ignore those sensations. 

My parents are gone. With them, I lost my past. The moment I learned Jess was dead, I felt our future together slip away. The joys and sorrows of shared memories: birthday dinners at our favorite restaurant; movies yet unseen (or unmade) that we will never talk about; a wedding day with a beaming Jess and a proud father; her first child; the heartache of disease and uncertainty; phone calls that now, alas, will never come. “Did you ever know, dear, how much you took away with you when you left?” laments C. S. Lewis at the death of his wife. “You have stripped me even of my past, even of the things we never shared.” Today my life is steeped in moments that were once we and are now I. 

Not “In Your Head”

“No one left to crack wise and beat me at cards,” Juno smiles, and I smile with her. Jess never once lost a game of Sorry. “I can still hear your laughter—that’s my idea of music.” I too can hear Jess’s laugh. At times my hands convulse, my arms quiver, as though I might turn sideways into a future where my daughter is alive. The experts are right. My nerves seek her and she is not there. This pain is no phantom.

I facilitate bereavement support groups. Participants relate that they still reach out for their loved ones, even after many years. Then reality returns. Their pain is not lessened or dulled, merely familiar, an old companion. “It wasn’t just you that died,” cries Rückert in another lament. “The joy woven into my world died with you.”

Such feelings are normal and expected, according to Mary-Francis O’Connor with the University of Arizona. She relates that when she asks mourners if they sense a part of themselves died with their loved ones, they reply with wide-eyed astonishment, that’s exactly how I feel. O’Connor explains that in life we develop a keen sense of psychological closeness with our loved ones. Our brains process this shared interaction, or overlap, over the course of many years. 

“We might think it is simply a metaphor to say that we have lost a part of ourselves when a loved one dies,” O’Connor writes, adding that this simply isn’t so. Our brains code representations of our bodies in our neurons. When an amputee experiences phantom pain, the brain is recording real pain. It is mapped into our nerves. “The process of grieving is not just about psychological or metaphorical change,” O’Connor says. “Grieving requires neural rewiring as well.” 

James Krasner with the University of New Hampshire refers to this phenomenon as embodied grief, “a literally embodied, neurological response to loss.” As with a phantom limb, mourners are accustomed to certain interactions with another person that now have no physical expression, causing acute and long-lasting pain. This in turn leads to a disruption of reality. 

Living in Two Times

“I still talk about you sometimes, say what you used to say,” Juno sings. “Get into it like you’re still here ’til memory pinches me awake.” It’s true: I often recall some of Jess’s favorite expressions. And more, I have included a few of them in my personal dialogue. Thomas Fuchs, University of Heidelberg, calls this experience “a fundamental ambiguity between presence and absence of the deceased, between the present and the past, indeed between two worlds.” We are living in two strands of time, he writes, a continuing past and a present without our loved one. 

One healthy way to reconcile these strands of time may be to externalize our relationship, says Julia Samuel, a psychotherapist and pediatric counselor. For example, we may wear things that confirm a sense of connection, such as clothes that our loved one admired, a watch or hat that they favored. One of Jess’s belts still hangs on the wall next to her portrait and I have no problem using one of her messenger bags when the mood strikes. 

Just over my desk is a photo with Jess, taken on a neighborhood swing set when she was very young. On a whim, I presented the picture to her as a young adult and suggested that we both sign it. You’re the best thing in my life! I wrote, scrawling Dad. “I love you!” she scribbled in reply, signing her name with an image she often used in her art. Today I thank God, on my knees I thank him, for these two whimsical moments: on a swing and years later, with a black permanent marker.  

After my daughter’s memorial service, I invited friends to write notes to her in a blank book, with my promise (which I have kept) that I will read selections at her graveside. “Finding an external expression for the continuation of the relationship through regular rituals is not only important,” concludes Samuel, “but has been shown to reduce negative emotions and increase positive ones.” This has certainly been true for me.

Each line in the book is precious: scribbled notes; misspelled words; even the spaces and dashes. I linger over thoughts scratched out and rewritten. These entries are my idea of music, as Juno sings. Their gaps and scrawls, lovingly penned or barely legible, remind me of an insight from Durham University’s Mark Sandy that “the final silence of death challenges poetry’s eloquent capacity for meaning.” I am also reminded of John Milton’s unfinished elegy for the crucified Jesus, “The Passion.” When he wrote the piece in 1630, funeral notices were engraved with white inscriptions on black paper—symbolism not lost on the poet:

My sorrows are too dark for day to know:
The leaves should all be black whereon I write,
And letters where my tears have washt, a wannish white.

Let the Dead Bury Their Dead

Such elegies can seem odd to casual observers. Not getting over it, they may whisper. Complicated grief. Well-meaning friends might suggest that prominent photos or beloved treasures are counter-productive. A shrine, they call it, implying that we’re not moving on. But let’s take a look at the illogic of these assertions. Shall we then remove the tombstone from our loved one’s grave? Or forgo visits to their resting place? This is nonsense, of course. Memorials are millennia old and for good reason. 

Consider Abraham’s burial of his wife near Mamre’s grove. The story takes up the entirety of Genesis 23. When Sarah died Abraham was living in an oak grove that belonged to a man named Mamre. Nearby was a tract of land known as The Makhpela, something of a catch-all term that had the same intent as “the fells” or “the downs.” The Makhpela contained a field and a cave, both owned by Ephron. (Adding to the confusion, Mamre was also a term for Hebron.) 

As tombs and caves were nearly always in the side of a hill, it seems likely that Abraham wanted the cave to be “facing Mamre” so that Sarah’s resting place would be within sight of an oak grove on the opposite side of the valley. His selection of Sarah’s tomb was important for many reasons. Soon all the patriarchs and matriarchs, save Rachel, would be buried alongside her. 

But this is not what resonates with me. In Genesis 23, after her death, the Torah repeatedly uses the word l’Sarah for Sarah. That term, Rabbi Ephraim Buchwald tells us, implies that Abraham weeps for the loss of Sarah, for herself as part of this world, rather than simply the impact of her death on him. In a prelude that seems ideally suited to Abraham’s grief, the widower is consoled by neighbors who are eager for him to procure the cave and bury his dead—a refrain that is repeated six times in twenty verses. 

Jesus provides a clue to the profound nature of this act when he tells a grieving son, “Let the dead bury their dead.” This well-known and enigmatic saying is so famous that it is nearly a parable, according to proverb expert Wolfgang Mieder, adding that most speakers are unaware of its biblical origins. The phrase comes from the gospels of Matthew and Luke. 

At the time of Jesus, burial was a private affair. Remains were interred in a family tomb, usually a cave carved out of limestone rock, with shelves for their dead. A full year later, the family would return to collect the bones and place them in an ossuary. This had a pragmatic purpose: the shelves could be used again and again for the dead, allowing a family to remain together in a single tomb, literally gathered to their ancestors.

Eric Meyers, professor emeritus and founder of the Center for Jewish Studies at Duke University, describes this later second burial in the ossuary as both internment and symbolic expiation of death: when “the dead bury their dead,” redeeming body and spirit from its decomposed state. The gospel reference seems to have been to this traditional Palestinian practice; in other words, Christ tells the young man to let the atonement of death in the second burial tend to itself. Or as renowned historian and New Testament scholar John Dominic Crossan translates the passage, “A follower to Jesus ‘I must stay to rebury my father.’ Jesus to follower ‘Let the dead rebury their dead’.” 

While it may be a bit much to ask that mourners bear the whole load of this biblical meaning, the words of Abraham’s consolers, and Jesus, offer sentiments we can understand. The bodies of our loved ones are gone; their spirits are free. As with Abraham, we do not grieve that we are inconvenienced: we mourn that they are missing from this world.

Grief is the normal and natural reaction to death. It is also universal, death and dying counselors Stephen and Ondrea Levine observe. “We are all in grief,” write the Levines. “Most display the old scars and rope burns of having one object or another pulled beyond their grasp.” Abraham’s healthy desire to have Sarah’s grave nearby serves not only to provide a sacred place of sorrow, but also hallowed ground where he may express his love for her. Modern mourners might follow his example.

Healthy Treasures

“And every room smells of you,” I sing along with Juno, trying to match her exquisite diction and natural lyricism. “Until my time I’ll hold on to what I have left, watch me.” Keepsakes of my daughter do indeed help me to hold on. They are normal and healthy. There is no time limit to how long such items remain in the home: months, years, or for the rest of our lives. One vital difference seems to lie with the emotions invested in these inanimate items. 

A transitional object, for example, is a comfort as we adjust to life without our loved one, such as a favorite stuffed toy, a blanket, or treasured clothing. A linking object, on the other hand, may veer dangerously close to imagining that our dead loved one is the object itself, with resulting anxiety and emotional breakdown when the object is removed. Healthy mementos may be put away when the time is right, which might in fact be never. 

Photos, treasures, and creative expressions such as art or poetry, may remind us of those many happy moments that are all the more precious in our loved one’s absence, suggests psychologist Shanee Stepakoff, a specialist in loss and depression. Deeply-felt love may lead to honest hurt, which in turn facilitates voicing of emotions that, if not faced, may fester and canker. Acceptance of pain can be liberating, or as Juno sings, she tries bandages but it still hurts. Such awareness has an honorable pedigree.

“My eyes are dim with grief,” sing the Sons of Korah, crying that they are numb from terror. They speak of the desperation, fear, and hope that so often mingle with love and grief. “I call to you, Lord, every day; I spread out my hands to you,” they weep. “You have taken from me friend and neighbor—darkness is my closest friend.” For many of us, darkness is an inevitable part of grief, but it is not all of grief.

While my daughter was alive, our home was festooned with Jess things: artwork, certificates, newspapers and magazines with her model shoots, handwritten notes, doodles, and photos, photos, photos. There is no reason for this to change now that our relationship is one of loving in separation. In fact, to take reminders of Jess down from my shelves would be odd—as though with her death I would sponge away her life as well. 

Removing our treasured memorabilia is not only peculiar, it can also be damaging. It is easy to dwell too much on negative or unpleasant memories that we wish we could change. Such ruminations may lead to brooding, self-recrimination, and remorse. However, guilt offers no solutions and no hope.  Here I take the words of Jesus to heart. I too let my dead bury my dead. Her spirit is free.

Thinking of this enigmatic saying, and phantom pain, I realize that our perception of death’s finality does not jibe with our secret selves, more certain and powerful than the physical world. Our souls rebel: we seem certain that there is more in this universe than what we see each day. Despite all evidence to the contrary, we sense that our loved ones continue on.  

Perhaps the teacher in Ecclesiastes was onto something. It occurs to me that God touched human hearts with eternity in more ways than we may know. I believe that when we are faced with excruciating loss, this eternity within assures us that we are never alone. As Emily Dickinson observes, our brain’s infinite potential to love reflects our infinite relationship with God:

The Brain is just the weight of God —
For — Heft them — Pound for Pound —
And they will differ — if they do —
As syllable from Sound —

Writing is my creative expression of love and grief, as it was for Dickinson, Rückert and Barbara Eden. “Tell me please, are you watching?” Madeline Juno weeps in refrain. I echo her resolve: Me too, I swear, ’til we’re together. I still wake from naps reaching for Jess. I continue to wonder how it will feel to hold her in my arms again. My phantom pain hurts, but it is also a grace. It gives me assurance of our continuing bond in this life, and hope for reunion in the next. That may be the only consolation that lasts.