STELLA

This is a poem that I wrote while listening to the late Dr. Richard Taylor, a Ph.D. psychologist who was diagnosed with dementia. He spoke at many conferences and had a website – whereby he advocated for more humane treatment of people living with dementia, especially the process of receiving the diagnosis and how people reacted. So, as I listened to him speak, I took notes and made the following poem out of what he said:

Let’s Face It (Dementia)

The doctor couldn’t face us
We don’t want to face it
But surely we fear it
Whenever we hear it
Having trouble with his shoes
Having trouble with his buttons
Is he gone or is he here?
Can we focus through our fear?

Embarrassment within
Embarrassment without
You aren’t who you were
And now we hear you shout
You never used to shout,
You never used to curse,
Can anything be worse?

We can fail to find each other,
to see each other,
to love each other
For better or for worse.

That would be the curse.

— Steven R. Sabat

Steven R. Sabat, Ph.D., FGSA is Professor Emeritus of Psychology at Georgetown University and author of Alzheimer’s Disease and Dementia: What Everyone Needs to Know.

In spite of a severe stroke that left him barely able to speak and unable to swallow, Dr. Bill, as we fondly called him, kept on singing. When I first met him, before he had the stroke, he was always smiling, singing, and joining in the activities at the retirement home where he lived. During one of the art sessions I led there, he also started to recite poetry, the verses of “Trees” by Joyce Kilmer: “I think that I shall never see a poem lovely as a tree.”* One day, shortly after his poetry recitation, I saw that he was no longer at his usual place at the retirement home, and I learned of his stroke. When I came to the hospital, it was a troubling sight: tubes everywhere, Dr. Bill sunken into the bed drained of color and life. But what struck me most were the sounds coming from his mouth. He was still trying to sing. Though most of his faculties had been stripped from him, music, his gift of life, remained.

Later, after he had settled into a new retirement home, I got to know his family, and we talked about how much he loved music and art when he was well. His daughter assured me that they would continue to involve him in both even though it would be much more difficult. His family continued to sing with him, even when the speech therapist had given up. And when painting on paper proved unsuccessful, his daughter bought face paints, and her face became his canvas. In these small gestures was so much meaning. They represented the love that transcends debility. They showed the power of voice and touch to forge connections, even at end of life. And they highlighted the role of creativity in illuminating those connections for all involved.

Dr. Bill passed away on August 30, 2014. His song will ever be with me.

–LC, 2017

*For more, see Shared Doings and Sayings.

 CARMELITA ESTRELLITA and I first met at an adult day center where she and I were serving as volunteers. Her fondness for the elders at the center was evident to me right away, and her kind spirit brightened their faces each time she smiled. At the time, I knew little about this tall, long-haired friend of the elders, only that her gentle presence brought light to their days.

After a while, I stopped seeing her there at the center, and I thought perhaps her schedule had changed. It wasn’t until several months later in fall of 2015, during my volunteer shift at the Hospice House, that I found out the reason for her absence. As I made my rounds, I entered a room to find Carmelita nestled quietly in bed. I learned that after a troubled, and ultimately unsuccessful, course of treatment for esophageal cancer, she had decided to enroll in hospice. At just 60 years old, she had found herself in the final months of her life.

During my shift, we took time to catch up. I gave her some updates on our elder friends at the center, and she told me what had transpired in the months since our last meeting. Soon, however, she began to venture into her past, sharing with me her harrowing life journey, a string of abuses, mental health hospitalizations, and feelings of shame and doubt that arose from being a woman born in a man’s body. She recounted tale after tale of discrimination, of abandonment, of deep suffering. As a child, she bounced in and out of mental institutions, not knowing why or for what end. From an early age, she had longed to live as she felt, as female, but those around her had little tolerance for the transgender person. In her lifetime, she had been without home and family, a stranger to the world and to herself.

But it was her response to the suffering in her life, and to the abbreviation of her days, that rekindled the light in her I had seen so often in the presence of our elder friends. In the place of anger and bitterness, she had found purpose, hope, and love. She found the strength to forgive and the courage to smile. She found gratitude. She found family. She found faith.

In the course of our conversation, Carmelita expressed sadness that so little time remained to share with others her discoveries and the messages of hope woven into the tumult of her life story. On her iPhone, she had recorded a poem she composed called “Book of Mine,” the beginning of a project that she hoped would preserve some of her stories for the benefit of others who, like her, have endured suffering in their lives. She said, “I would like to make a book.”

Her request set in motion the project from which the book Little Star has evolved. Deeply moved by the intensity and honesty of the stories she had shared with me, I offered to work with her to make the book a reality. Having designed a number of books in the past, I was very excited to collaborate with her on this—and I was humbled to take on the task of collecting and representing her words (and artwork) in this way.

Over the course of a few months, we met almost weekly in her room at the Hospice House to record her stories and to make art together. Carmelita has loved to write all of her life, and she studied painting in New York and at the University of Virginia. So with art supplies generously given to her by her friends, she put pen to paper and brush to canvas, rendering scenes that are a mix of memory and imagination, as she talked to me about her experiences. We recorded the conversations with her iPhone, which I later transcribed for publication in the book. While she spoke, I also took the opportunity to draw her, as a portrait artist is eager to do, and I have included these sketches in the collection of memories that the book contains.

In the months of our collaboration, I could see the blessings that had inspired the messages Carmelita wished to share with the world. In stark contrast to the abandonment she had experienced early in her life, a steady stream of friends and family ebbed in and out of her hospice room, sometimes carrying her out to her favorite places around Charlottesville, other times releasing surges of tears and laughter as they mended old wounds or remembered times of joy. From her bed, she was even able to stay connected to the elder community with which she had formed such a strong bond. She continued to show her support for a local initiative called Friends of Elders, a group of volunteers dedicated to eliminating loneliness, isolation, and abuse of older adults in the community. And in the midst of the turmoil she endured in the months following her diagnosis, she had even found the love of her life, a friend who stood by her side through it all. What she had longed for in all those years of suffering seemed to blossom in this last chapter of her story.

But I also could see the fears and the distress that naturally attends confrontation with one’s mortality. She had nightmares and sensations of immanent death. She described the ways in which her body was beginning to lag behind her conviction to be and to love in the world. She lamented the impending loss of the relationships that had enriched her life so deeply in the past few years. Thus, entwined in her messages of love and forgiveness are inevitable insecurities that death cannot but evoke in us all. But she did find some solace in her friendships and her faith in God. She found hope, too, in the sense of purpose that our project had given her.

Carmelita impressed upon me that she would like her messages to reach others who face struggles in their own lives. She said, “I think I’m already making this book by the people I’ve talked to and the people that come in here—it’s had a good effect on people.” From my point of view, I see this is true, and Little Star is yet another way to spread the seeds of goodness she has sown so far. It is a snapshot of her indomitable spirit, a little star whose light will shine when that of her body has faded.

One of the most moving accounts contained in this book is the story of the bond that Carmelita formed with her aunt at end of her life through a shared interest in literature. She called their time together “a blessing for both of us.” I feel the same way about the time I have spent with Carmelita. She has opened my eyes to dimensions of suffering I had never understood and to the capacity of the spirit to find beauty in it nevertheless. She showed me the power of forgiveness, which the pages of her book have the potential to awaken in all of us.

–LC, 2017

For more information about Little Star and to order a copy of the book, please email Lauren Catlett at lec2c@virginia.edu.

I look a lot like the woman in the portrait above my bed. Dark hair, slender build, sloping nose that cantilevers over parted lips and square teeth: our features are architectural. She sits erect in a sequined wedding gown, beaming with the joy of a new bride. My eyes seek hers, but she evades them, her gaze fixed on some faraway place.

What is her story? I know that by thirty-four years old, she had married and become a mother of two girls, and I know she designed the house that her family now inhabits. I know she was an artist, filling sketchbooks with delicate pencil drawings, from which her daughter spent many childhood hours copying. I know that she thirsted for perfection, no smudge un-scrubbed, no wrinkle unsmoothed. And I know that just five years after she sat for that portrait, she lost her life to a mysterious illness.

No one knows when her symptoms first appeared. Only when intractable fever, rash, and pain gained her admission to the hospital was it clear that illness had cracked her stoic façade. “Her muscles and joints are hurting her, and they hope to find out why,” her mother wrote at the time. “I’m getting very worried.” But her doctors were at a loss for a diagnosis. They suspected Still’s disease, a rare inflammatory disorder. She was prescribed steroids, and she began to recover, returning home a week later.

Recovery was, however, illusory. One night, a month after she left the hospital, she awakened her husband in a fit of breathlessness. A cough that caused no alarm the day before had progressed quickly to severe respiratory distress requiring admission to intensive care and emergent intubation. Fluid seeped into her lungs. Her immune system was failing, and she was suffocating.

Imagining myself at her bedside, I picture a woman very different from the one in the portrait. A halo of tubes and wires radiates from her slender body, loosely veiled in a wrinkled hospital gown. Her lips turn to blue, starved of the breath that passed through them just hours before. Her eyes are closed, her expectant gaze extinguished, and her frame, once so strong, collapses into the tangle of sheets, tubing, and frantic fingertips desperate to save the life obstinately slipping through them. She languishes in chaotic silence as the final beat of her heart strikes her breast and the first tear falls for a spirit too soon departed.

My thoughts turn to her young children. I envision them crawling curiously through an ever thickening forest of dressed-up legs belonging to people familiar and strange whose whispers like wind and tears like rain descend upon their heads as the tempest of loss sets in. I hear their lonesome cries echoing from the walls of the house she built. I marvel at the accomplishment of that house, whose structural integrity defiantly outlasted that of its designer. It would shelter those children in her absence, a womb of beams, bricks, and grit. The labor was long, and the girls were born into adulthood unsmoothed by their mother’s touch.

A mother’s death shapes her daughter’s life. It carves a hole at her core that she spends every day trying to close. She patches it with stoicism and indifference, eschewing the pain in silence. With time, the patches disintegrate, and the wound reopens, scarred but spilling sorrow just as fervently as the day it appeared. She carries on quietly, lips tightened to contain the grief circulating out of her fenestrated heart. She becomes an edifice. Guarded and mute, she nurses her wound alone, fearful that exposure to the elements of judgment and pity would widen it. She thinks the cracked foundation is a structural flaw only her mother’s hand can repair.

She flips through her mother’s sketchbook and pauses on the pages where delicate pencil lines articulate hands with long fingers poised in gentle gestures. She traces those fingers with her own, noticing how alike they are. She picks up a pencil to draw, and she tries to resurrect her mother’s hands with her clumsy scribbles. With time her artistry improves, but years of practice never allow her to grasp her mother’s spirit trapped in the fibers and fabric of parchment and time.

Her hand, empty of a mother’s touch, grows cold, and she extends it to the others in this world that illness and adversity have emptied. It is an act of charity steeped in self-interest, for she hopes that holding their hands will break the numbness in hers. She takes hold, knowing that the union could close the wound her mother’s death had created—or inflame it. She takes the risk, driven to feel, and heal, the heartache of her loss.

My thoughts return to the portrait on the wall of my room. I nod to her, the one I had called mother—before she took her last breath, 25 years ago today.

—LC, 2016

“Recently, I was sitting with a dying patient who was in pain and short of breath. I said, “I can see you are suffering.” He replied, “I’m not a person anymore. I can’t walk outside; I can’t play the piano. I’m just not a person. My time is up.” This exchange recorded in the essay “Narrative Possibilities: Using Mindfulness in Clinical Practice” by Julie Connelly, MD, author of the most recent post to this site, raises an urgent yet fundamentally unanswerable question: does the death of personhood precede death of the person? In his fragile physical state, moving toward death while immobilized on his deathbed, the man believed he had witnessed the interment of his personhood even as his body lived. Reading this exchange for the first time left me dismayed. That he no longer identified as a person because of his physical limitations was admission that level of ability relative to one’s past corresponds to one’s very existence as a person, and consequently, that disability means diminished personhood. While I will leave ontological argumentation to the philosophers in this case, personal experience gives me reason and license, presumably, to comment on the matter. Working each day with older adults who, because of illness or frailty, are no longer able to engage in activities that once defined them, I see that, while certain abilities have been lost, their personhood remains intact. I see their creativity emerge as they find new ways to interact in a world that ill health has made alien to them. An artist paints with her left hand when her right is crippled; a professor of literature invents a kind of sign language when words begin to escape her; a dancer taps her toes to the sound of music when weak limbs have left her all but in a wheelchair. Even days from death, an opera enthusiast enjoys one last show with a friend, watching scenes unfold on screen across from her hospital bed. These encounters reveal personhood bright and clear, where diminished faculties of mind and body have inspired adaptation, not evacuation, of identity. Personhood is more than ability, and the dying person continues to have access to personhood as long as it has modes of expression beyond those that it once had in the past—and these are infinite.

While I do not mean to extrapolate the dying man’s words as a general statement on the nature of personhood at the end of life, I do believe the implications that his words evoke must be challenged if we are to exit the dangerous territory in which dis/ability solely defines identity. Yet a second reading of his confession raises a different interpretation. “My time is up,” he concluded, casting his resignation of personhood in a new light. While his words may reveal the nature and degree of his suffering—his perceived distance from a former identity—his final statement suggests acceptance of his mortality. Perhaps, in some ways, resigning one’s personhood becomes a way to relinquish ties to identity as a living person and enter into the identity of one who is dying. For some, this subtle change in perception may be the key to a peaceful death. Perhaps the death of personhood must precede death of the person in some cases to ease or even enact the transition from life to death.

Much more can be understood from the man’s words, especially in the full context of his final days as described in Connelly’s essay, but for now those musings will remain unwritten. Nevertheless, this brief exchange between a patient and his doctor aroused in me both conflict and new insight. While it represents a seemingly fatalistic outlook on personhood at the end of life that need not, and indeed should not, apply to all dying persons, it does describe a mode of experiencing the dying process that may in fact help release ties that fundamentally resist the transition. For those of us whose time is not yet up, Connelly’s account calls on us to meet the dying person where he is—to abandon preconceptions of what is “best” for him (oh, how I would have liked to show him how much of his personhood remained to him without the ability to walk outdoors or play piano!) and to support his personhood or to accept his denial of it, as relationship and circumstance see fit. Personhood may indeed die before the person, but it is not inevitable—and it may yet never die at all. But that is for another post.

 — LC, 2013