Life at the End of Life: Finding Words Beyond Words

By Marcia Brennan

Artist and scholar Marcia Brennan serves as Artist in Residence at the M. D. Anderson Cancer Center in Houston, and the experience of seeing, close-up, the transitional states and transformational visions involved in the approaching end of life raised countless questions about the intersection of life, death and art.   Those questions are at the heart of this unique book. Bridging disparate fields, including art history, medical humanities, and religious studies, Life at the End of Life explores the ways in which art can provide a means for rendering otherwise abstract, deeply personal and spiritual experiences vividly concrete and communicable, even as they remain open-ended and transcendent. In the face of death, suffering and uncertainty, Brennan shows how artistic expression can offer valuable aesthetic and metaphysical avenues for understanding and for making meaning.
 

• Language: English
• Publisher: Intellect Books
• Release date: Feb 22, 2017
• ISBN: 9781783206995

Marcia Brennan

Marcia Brennan is professor of art history and religion at Rice University.

Book preview

Part I

Painting the Stories: Applied Aesthetics and the Living Epiphany

Figure 1: Lyn Smallwood, Between Water and Sky, 2011, charcoal on white Canson paper, 10 ¼ × 7 ¾ in.

Chapter One

Between Water and Sky: The Artist In Residence in the Clinical Context

For human beings, life is meaningful because it is a story.

Atul Gawande, Being Mortal: Medicine and What Matters in the End

Shortly after I began working as an Artist In Residence in the Department of Palliative Care and Rehabilitation Medicine at the University of Texas M. D. Anderson Cancer Center, I received a physician’s referral to see a particular patient. When I first knocked on the man’s door, he wasn’t in his room, but a few minutes later I saw the orderlies wheeling him back after a radiation treatment. In that moment, the man was no longer an impersonal sheet of white paper containing a set of Physician’s Orders. Instead, he had become a unique individual with a quiet voice, gentle manners, and steady blue eyes that met my gaze directly. Although still only at middle age, the man was very frail, as his head and neck cancer had spread throughout his entire body, and no less than five separate IV bags dangled from the silver poles at his sides.² I waited outside the door for a few minutes while the attendants settled him back into bed, and then our visit could begin.

As is often the case, we started out slowly with some casual conversation. I asked the man where he was from, and he told me about his hometown and his family, particularly his young children. As our conversation unfolded, he also told me a little about himself, especially how he loved working with his hands. Describing the details of his various projects, it became clear that this self-taught carpenter was a gifted craftsman. When I asked him what he loved to do, he replied, I love to fish. Over the years I’ve owned several boats. It’s all about just being in the water. That has a special place in my heart. Yet to his deep regret, his children did not share his love of nature, but instead preferred spending time indoors playing video games. This man then expressed his sadness and concern – a theme I hear all too often – for how he will be remembered by his young children. He wanted them to have a genuine sense of himself, something to hold onto as they grew up. In particular, he wanted them to know of his profound love of nature. I knew then that we would be creating a memory as a legacy gift for his children.

As an Artist In Residence I serve not as a visual artist, but as a creative writer. Because my primary materials are words, I work in the expressive media of language and human consciousness. On that particular day, I happened to be collaborating with a visual artist who would illustrate the scene. The man requested an image of himself wade fishing, and the painter asked him to describe the details of the natural environment. In particular, she wanted to know whether the sandbar was visible on the ground or invisible under the water. With language that resonated on multiple levels at once, he replied, It’s variable, depending on how the tides come in and out. Sitting quietly together in a placid flow of conversation, it felt as though we were all perched on the little oasis of the sandbar. Several times during the visit, the man remarked how surreal it was to be working with artists, particularly since so much of his hospital experience had centered on tests, procedures, and treatments. While the man shared his cherished images of sunlight on the water, the visual artist made a detailed pencil drawing that served as the underlying framework for a vibrant watercolor painting. As the image took form, she asked him what color he wanted his shirt to be. Pointing to a light aqua square on the watercolor palette, he replied, Use this one. It’s something between the water and the sky.

When the painting was complete, I read the man’s words aloud and inscribed them on the bottom edge of the drawing, which he then signed as a personal message for his family:

Between Water and Sky

For my children,

I’d like you to know how much I love the water.

That has a special place in my heart.

There’s nothing better than the sun coming up in the morning.

In this picture I’m wearing a light blue shirt,

Something between the water and the sky.

Just as the man had reached a place of inner peace, he had symbolically situated himself in a middle ground, or intermediate layer, between the earth and the sky. In both his lived experiences and in his creative reflections upon them, the man had positioned himself in a transitional space where the tides come in and out, while he stood poised between immersion in the tidal flow and expansion into the rising light.

After working together for about an hour and a half, we were all gazing at a luminous watercolor image of the man wearing a light blue shirt standing in the water wade fishing, with a glorious sunrise visible on the horizon. As is the case throughout this work, the man kept the original drawing as a gift for himself and his family. All of the images that appear in this volume were commissioned specifically for this book from the West Coast visual artist Lyn Smallwood, and the visual materials are based on my subsequent written accounts. Thus the images were not produced in situ at the patient’s bedside, nor do they resemble any works now in the collections of surviving family members. Inspired by the story, Lyn Smallwood’s expressively textured charcoal drawing Between Water and Sky (Figure 1) displays a continuous horizon line marked by gentle zones of transition and contingency. Wisps of soft clouds hover in the early morning sky, while the rising sun appears like a radiant orb. Filtered light extends downward from the sky through the water, at once heightening and modulating the contrasts between luminous presence and ambient darkness. Within an otherwise symmetrical composition, the fisherman appears to be at once diminutive and monumental as he stands just to the right of the rising light.

Toward the end of the hospital visit, the man looked at the original watercolor drawing and he noticed that the visual artist had placed a golden cruciform shape on the horizon. The cross glittered obliquely at the point where the sky met the water, while he cast his line into the rising light. The man then spoke of his recent conversion to Christianity. While he had always loved the natural world, he knew now that Jesus was there the whole time, but he was waiting on me.

Throughout our visits, people will often describe their perception of a sense of presence that transcends the self. Thus many end of life narratives contain strong spiritual elements, themes that may or may not be expressed through established religious traditions. When discussing these subjects in my book The Heart of the Hereafter: Love Stories from the End of Life, I noted:

Because this work takes place in Houston, Texas (and thus, in the Southwestern United States), Christian themes tend to recur in the end of life narratives. However, the production of the narratives could extend to any faith tradition, even as the works do not have to include a spiritual or religious component at all. As this suggests, this aspect of my work as an Artist In Residence resonates with that of a nondenominational hospital chaplain who may encounter a Christian patient in one room, and in the next an atheist, a Jew, a Native American, a Muslim, a Buddhist, or a member of any other faith tradition. Not only is Houston a diverse multicultural city, but people come from all around the world seeking treatment at this renowned hospital. Thus my artistic work implicitly bears the traces of a mini-cultural ethnography that is at once regional and international in orientation. The work requires me to move between numerous perspectives in a single day while producing artworks that are sometimes expressed in explicitly religious language, and sometimes not.³

As this suggests, this book does not present a unified narrative (much less a systematic expression of belief) regarding issues of religion or spirituality in end of life care. Instead, the artworks represent unique personal expressions that are informed by a freedom of exploration that includes – and often extends well beyond – the familiar parameters of the self. Like many of the narratives, the fisherman’s story presents a composite perspective as his artwork remains suspended evocatively between the secular and the sacred domains, much like the morning sun rising over the water, where the sea and the clouds become fused in the colored light of sunrise. At the outset, this story also raises important questions that I will return to throughout this book. As exemplified by the transition from the impersonal sheet of white paper to the unique presence of a living individual, at what point do people at the end of life seem to lose their humanity and become abstractions? And conversely, at what point do individuals become real – and become human – to ourselves, and to one another?

Painting the Stories: The Artist In Residence

The need to raise such complex questions – and to find language to express states of being that lie beyond the boundaries of language – arises throughout my work. Expanding on the discussion I initially presented in The Heart of the Hereafter, here I will note that in my day job I am Professor of Art History and Religious Studies at Rice University, where my research areas include modern and contemporary art history and museum studies, religious studies and comparative mysticism, and the medical humanities. Despite their differences, each of these fields shares a common set of themes and challenges, namely: How do we find language to describe states of being for which there is no language? How do we represent the unrepresentable and translate the untranslatable? How do we formulate metaphors of transience to describe subjects that are simultaneously coming into form and going out of form, sometimes within the framework of a single image? And how do we represent the fragile zones of contingency that mark both gradual transitions as well as more dramatic shifts between states of being? Notably, these issues are as pertinent to theoretical discussions of abstract painting’s simultaneously dissolving and crystallizing structures as they are to the contemplation of spiritual experience and mystical ecstasy, as they are to the very real challenges of people at the end of life.⁴ Thus, throughout all of my work I am fascinated – and profoundly moved – by subjects and situations that repeatedly exceed our capacity to represent them, even as we repeatedly attempt to do so, often through imagery that conveys transformational states and transcendent visions.

Since early 2009, it has also been my privilege to serve as an Artist In Residence in palliative care at the M. D. Anderson Cancer Center. My work is sponsored by COLLAGE: The Art for Cancer Network, a nonprofit organization conceived and founded by Dr. Jennifer Wheler.⁵ In the hospital setting, I assist patients and their caregivers in constructing meaningful stories to express their insights and experiences. As the patients and I produce poetic narratives together, my role can best be described as that of a scribe and a curator of thought, as I ask questions and record the responses they inspire. Yet much of what I record is ineffable. I create a context, and provide critical skills, so that people facing extraordinarily difficult life situations have an opportunity for personal and symbolic expression, which then becomes clothed in aesthetic form.⁶

As an Artist In Residence, I constantly confront the challenge of creating human connections across a formidable gulf of separation. Frequently, when I initially approach a patient I am told that the work sounds interesting, but I have no artistic ability. This invites me to respond, "Well, let’s just say for a moment that you did have artistic ability. What images would you want to write about? Depending on the circumstances I might also ask, Where are you from?, What do you love to do?, or even more simply (yet never simply), What do you love? If the person mentions their family, I will ask them to name their family members and then, working down the list, I will ask them, Can you please tell me something wonderful about your husband? About your daughter?, etc. When we reach the very end, I will turn to the person and say, Now I’ll ask you the hardest question of all: Can you please tell me something wonderful about yourself?" While people may find this question challenging, it often provides the crucial thematic element that ties the story together while expressing an insight that other family members cherish.

Depending on the circumstances, the visits can last anywhere from five minutes to three hours. Sometimes if a person is particularly weak or short of breath, I will just ask them directly, If there were an image in your mind of something that holds special meaning for you – and it can be anything at all – what would that be? Very often a flash of illumination will become visible on the person’s face, and they will share an image with me. They will describe a subject or a scene, while I gently encourage them to talk and make notes to help crystallize their thoughts. Once the artwork is complete, I read the person’s words back to them, while making any additions or corrections that they indicate. The text is then inscribed into a handmade paper journal, which the person is able to keep and share with their family, either as a medium for further creative expression or as a legacy gift that performs a memorial function. The journal thus provides a durable yet tender memory of this transient moment in a person’s life. The journal can also provide family members, friends, and caregivers with a gentle means to communicate with one another during a time when people may find it difficult to express their feelings.

The Orange Tulips: The Paradox of Grounded Ascension

Throughout my work, I witness the ways in which the domains of poetry and lived experience repeatedly converge rather than remaining as categorical opposites. As people share their stories, ordinary scenes will appear with a pronounced intensity, and the everyday world seems to crystallize and dissolve all around us.

One day I visited with a Japanese-American family. The patient was a dignified elderly woman with advanced tongue cancer. While she was nearly unable to speak, her adult children shared details of their family history. The woman’s daughter told me that her mother was a wonderful storyteller, and even now, this proved to be the case. Lying quietly in her bed, the elderly woman listened attentively as her daughter recalled her mother’s childhood growing up in Hawaii. In her youth, the woman had been very close to her grandparents, especially her grandfather, who was an extremely gentle, kind, and patient man. As she said, Everyone loved him, and his wife would do special things for him. In turn, he would bring her bouquets of the colorful wildflowers that grew lavishly on the island. While the bouquets were for his wife, everyone in the house delighted in the flowers.

Hearing these reminiscences, the elderly woman spoke of the bouquets that had brought such joy. Through a very few, well-chosen words the woman’s striking imagery appeared to be at once grounded and ascending, as her vision was rooted in her childhood experience just as it lifted up everyone in the room. As she said:

My image is of wild flowers –

Especially, orange tulips.

They make me feel lighter.

The woman’s vivid phrases resonated with the expressive power, clarity, and subtlety of a calligraphic poem. In her artwork, the orange tulips appear to be radiant as they evoke both concrete sensual presences and an etheric lightness of being. Such a multifaceted perspective is possible because – as in life itself – at the end of life the smallest objects and the most intimate, familiar details can become invested with monumental significance. When this occurs, lived experience can appear as a visionary mode of consciousness.

There Is Nothing But the Story: The Text and the Life

This creative practice raises a number of intriguing practical and philosophical questions, not the least of which concern: What does the artwork consist of? Where does the artwork occur? And what are the processes through which it emerges? The simple answer is that there is no simple or single answer to these questions; rather, the answers will vary depending on the needs and desires of the patient and their caregivers, all of which inherently shape the unique character of the encounter. Various degrees of focus and gentleness, of vulnerability and trust, are necessary to create the narratives. Some patients are eager to talk, while others may be in various states of pain, sadness, or introspection. Sometimes periods of silence, handholding, or tears precede or follow the words that we exchange. The artwork reflects the totality of the encounter and its various dimensions of presence – including the gestures, the silences, and the wordless communications that can be more eloquent than speech. The artwork also encompasses the acts of conversation, writing, and listening, as the person hears their story and witnesses their own beauty as their words are read aloud. The final aspect of the artwork’s production entails my inscribing the narrative into the handmade paper journal and presenting it to the person. Thus, in this volume the term artwork refers not only to Lyn Smallwood’s book illustrations or to the occasional references to drawings produced at the bedside. Just as the artwork arises in the dynamic space that unfolds between the patient and myself, so too does it extend from the time that the person and I first make eye contact with one another to the final moment when I walk out the door.

Regarding issues of voice, sometimes other people in the room will contribute details or share their memories, further fleshing out the story. If the narrative involves these other people, I will often invite them to share their memories of what is significant to them; when this occurs, the artwork becomes polyvocal. Once again, my role in the production of the narratives is scribal, and all of the language comes from the people themselves. My textual interventions are kept to a bare minimum because if the story reflects my voice rather than people’s own voices, then the narrative has little value. While I do not alter the substance of the story, the selection, presentation, and arrangement of the spoken words into poetic lines are all fashioned by me, on the spot, in the totality of the encounter. Thus I put the successive lines in order, determine where line breaks occur, and arrange the composition so that a coherent narrative emerges from what might otherwise sound like a casual conversation or a string of amorphous phrases. After hearing the narrative read aloud, people will sometimes correct a detail such as a particular name or date. People will also occasionally propose alternative wording; for example, when they initially call their son-in-law an idiot or a pain in the ass, they may subsequently ask me to refer to him as a prodigal, or as a challenge, or simply to say, For years, our son-in-law kept us all real busy.

Yet beyond this initial description, there is not a predetermined protocol for this creative work. Instead, through practice and experience I have learned how to cultivate the conditions that allow an artwork to emerge in the exceptionally fragile setting of end of life care. Indeed, acute palliative care teaches the value of being a person who listens through the heart, and who listens well and does not waver or fluctuate. Again and again, I practice the paradox of being extremely focused and intensely present so that I may sit back even more deeply in the chair and not take responsibility for the images and words that come forth. Thus on many levels, my work is informed by a very beautiful and difficult paradox, that of holding on by letting go. When doing this work, there is no directive that says: It could be; it should be; it might be. Rather – it is – and again and again, there is nothing but the story.

Shifting Winds and Deep Waters: Four Narratives of Navigating the Journey

While individuals often share inspiring and transcendent images, sometimes people’s fears emerge metaphorically in their words. At the end of life, people can experience various states of pain and fear, sorrow and longing, denial and resistance. While these subjects are examined in Chapter Three, here I will share an example of how an artwork can appear as a story of the shadows.

One day I met a man whose energy and demeanor were extremely negative. He expressed something that I have only heard a handful of times, namely that his pain and suffering were completely unbearable. The patient was new to the Unit, and his pain medications were still being adjusted. He did not want any visitors in the room, but before I could turn to leave, his wife began talking. She told me that she took therapy dogs to visit nursing homes, and that she recognized the potential comfort that could come from an artist’s visit. In this difficult context, the woman wanted company and she was eager to talk. Given that her husband would not allow her to leave his bedside, she started speaking then and there. Together, they told a story related first from her perspective, and then from his:

There Are No Streetlights on the Ocean

My husband loves the ocean.

He’s a sailor.

He has two boats, and he used to race.

One time he and his crew were out on an ocean race

And on the way, they had a storm.

One time, out on the sea,

I looked down and there was a twenty foot wave coming on,

So I just tied myself down and hung on.

Sailing is pretty dangerous,

Especially at night.

There are no streetlights on the ocean.

While this visit lasted less than ten minutes, an evocative image emerged that provided an expressive metaphor for the man’s present situation. The couple described the man’s passion for sailing, as well as the very real threats that he encountered while out on the open water. Now at the end of his life, the man saw the waves of an oncoming storm threatening to wash over him once again, while he struggled to hang on and find his way forward in dangerous, uncharted territory as he "navigated in the