The Wonder of Sorrow

THOUGH THE FREQUENTLY QUOTED line from Anna Karenina sets up an easy distinction between happy and unhappy families, the authors of two new graphic memoirs, Aliceheimer’s: Alzheimer’s Through the Looking Glass and Rosalie Lightning, suggest a third possibility: every family, happy or not, faces tragedy in its own way and, sometimes, makes meaning from the experience. These works provide intimate glimpses into the worlds of two families facing very different struggles related to illness and death. In Aliceheimer’s, Dana Walrath shares the penultimate chapter of her complicated relationship with her mother, Alice, whose crumbling hold on time and decorum allows old wounds to heal and both sides to gain perspective. Tom Hart’s Rosalie Lightning, on the other hand, tells the story of how Hart and his wife survive their plunge into profound grief after the sudden death of their daughter a few weeks before her second birthday. What the editors of the Penn State University Press’s Graphic Medicine series say about Walrath’s book applies just as readily to Hart’s: both works “attest to a growing awareness of the value of comics as an important resource for communicating about a range of issues broadly termed ‘medical.’” Certainly my own interest in these books is inflected by my experience as a family physician and writer, although perhaps in a manner that is more complicated than one might assume.

The authors each share horrifying (and in Walrath’s case, not so uncommon) experiences in a way that creates a mélange of complicated, overlapping feelings in the reader (rather than the gut reactions of fear and recoil that one might expect from the books’ jacket copy). Their books are not merely sad songs, meant for crying along to, but instead open in many directions and invite exploration. Unlike traditional, text-only books that explore similar landscapes of human experience, the graphic memoir form allows for both immediate accessibility and a more intense experience. Like many forms of art that can, on the surface, require little time to experience initially, they invite return and reflection. The words, the art, and the combination of the two work on you at different speeds. This is one reason why reading comics is a specific joy, distinct from reading stand-alone text. That said, the books also differ from each other: what stayed with me after reading Aliceheimer’s were the stories, while with Rosalie Lightning I was more drawn to the interplay between images and text. In that respect, Rosalie Lightning is more successful as a comic, while Aliceheimer’s might better be described as an illustrated text.

Aliceheimer’s is the portrait of a mother and daughter during the period when the mother, Alice, was ill enough to be unsafe living alone but not so ill that she required institutional care. Originally published in Armenia by Harvest Press in 2013, Walrath’s book has been reissued by the Pennsylvania State University Press as a part of their Graphic Medicine series. The volume comprises 25 short essays accompanied by artwork — black-and-white drawings collaged with cuttings from a yellowing copy of Lewis Carroll’s Through the Looking-Glass and occasional blocks of solid color. Alice herself appears in most of the illustrations, usually as her older self, a round-faced woman with cherubic cheeks; large, dark, full-lashed eyes; and curly gray hair surrounded by a halo of darker tendrils that appear like grass, sea anemone tentacles, or myriad sperm knocking on the wall of an ovum. This last image is not drawn from my imagination, but rather from a rare non-Alice panel that, positioned alongside an essay about DNA and genealogy, displays an image of fertilization very similar to Alice’s halo. After creating the first panel in this project, Walrath realized that the halos were also reminiscent of those in Armenian manuscripts, and thus perhaps an unconscious homage to Alice’s heritage.

Walrath comes to her work as a writer and illustrator after training as a medical anthropologist and spending years teaching medical students about the use of story in clinical work. She brings her skills as a detached observer familiar with the cultures of medicine, illness, and health care systems to her art, using her fields of expertise both as an anthropologist and a medical communications teacher to mediate her own experience — sometimes with more success than others.

The essays document the way in which Alice, as she becomes less bound to the lessons and history of her own life, discovers the world, both interior and exterior, anew. One of the most affecting moments occurs when Alice asks her daughter for help. “I think I grew hooves. Can you check?” The narrator examines her mother thoroughly, taking care to prove to her that all is well, treating her mother as the woman once might have treated her children. Alice then asks her daughter to check her head. Walrath does so, and, being skilled and poised enough to call on her expertise for a task which she calls “more intimate than the daily help in the bathroom,” asks her mother what was making her feel bad about herself. “I wasn’t very nice. I wish I had done better.” This scene demonstrates one way that relationships can evolve when one person’s mind unravels. Alice has the wonder and fears of a young child, but is, at the same time, burdened by shadows of memories from an entire life.

All this Walrath — not always necessarily — explains. She is an anthropologist, and cannot help but do so. She writes that she did not have an intimate relationship with her mother “until Alzheimer’s.” Ironically, she grows close to her mother as Alice’s hold on time and lineage breaks down. In an essay that centers on permission and eating, Alice asks her daughter for a tomato from a bowl on the kitchen counter. “Help yourself,” her daughter replies. “My mother wouldn’t let us do that,” Alice says, to which the narrator replies, “Mine wouldn’t either.” This exchange leads both mother and daughter to tell stories about food and childhood. Alice ends by saying, “You must have been a cute little kid. I wish I had known you then.” In another essay, Walrath describes a conversation that begins with Alice asking her why she is so good to her, continues through Alice’s rediscovery that she is Walrath’s mother, and ends with Alice already lost again, saying, “Running a hotel must be very hard.” In the middle of that conversation, they forgive each other again. Walrath writes, “Alzheimer’s would let us have this conversation every single day.”

The book ends not with Alice’s death but when her care becomes too difficult for family to provide. That these are the bounds, that Aliceheimer’s ends not with a peaceful home death, but with Walrath visiting her mother in memory care, reflects the author’s understanding of both her mother’s illness and the healthcare landscape. These transitions are narrated without much emotion, underscoring the banal and bleak situation faced by many adult children caring for their parents. I would have appreciated a deeper exploration by Walrath of her own emotions about caring for a parent who fades mind first, body second. But Walrath primarily wishes to give us a portrait of Alice at the moment when decades of experience have desiccated and collapsed onto themselves, and that too has value.

In contrast to Walrath’s focus on an adult’s relationship with an aging parent, Hart uses a range of imagistic and narrative tools to present a recursive and layered portrayal of his life as daddy to a lively toddler and then — in a flash — a man whose child has died. Rosalie Lightning includes renderings of scenes from Hart and his wife Leela’s life in the weeks after their daughter’s death, of their dreams, of recurring images that dominate his waking ruminations. These images are infused with the full spectrum of grief — the timelessness, the feeling of being unmoored, the pain, the lack of pain, the fatigue, the inability to sleep, and the recurring images of the lost loved one.

Hart, an accomplished cartoonist and visual arts teacher best known for the Hutch Owen series of comics, previously published another book about fatherhood, Daddy Lightning. On his new book’s title page, Hart gives co-authorship to Rosalie; his wife, the cartoonist Leela Corman; and a collective of neighbors, friends, and artists: singer-songwriters, film directors, actors, animators, comic artists. He also acknowledges three other groups that overlap in some way: “donors, lovers and friends.” This acknowledgment, in hand-drawn script, tells the reader that this will be an uplifting read, and it’s a wise choice. Despite the bright oak tree on the cover, and my proclivity toward reading about grief and illness, even I found a book about a dying child to require more of an invitation than most.

After an opening chapter that details the immediate aftermath of Rosalie’s death, Rosalie Lightning offers a concise backstory: a young family, two artists and their spunky blonde daughter, pushed out of New York because of the way New York is, are making a lovely life together in Gainesville, Florida. Rosalie’s toddler diction, habits, and exuberance dominate the father’s days. Anyone who has spent time with a newly verbal human will recognize the joy, humor, and exhaustion displayed in the panels that show “Rodzy” (as Rosalie calls herself) going through her days with daddy in tow. Then tragedy strikes. One November morning Rosalie’s parents find their daughter — who had been sick for a few days with one of the colds that toddlers continually get in preschool — cold and blue in her bed.

The remainder of the book tells the story of Hart’s life without Rosalie. The pages of two chapters, V and VI, which describe the days immediately after Rosalie’s death, are framed by black. Throughout the text, the figures of the narrator and his wife look similar: slump-shouldered and head-hung figures in bland clothes, with hatched lines under their eyes that occasionally extend to cover their entire faces. The hospital scenes take up minimal space in this work, an important reminder to those of us who work in those spaces that though big things can happen in hospitals, they are, for most people, not a part of the real world. Hart makes it clear that nothing about his experience in the hospital was positive — the images from the hospital, of closed doors and Rosalie’s cutaway shirt, are stripped down, devoid of people. As Rosalie dies, awe returns in the image of her birthmark blooming and fading as she goes from critically ill to gone. This was the point in the book where I cried.

They don’t know why she died.

And they don’t focus on it.

Here I found myself trying to read between the lines. Did Rosalie have pneumonia? Was she unvaccinated? Did her parents’ tenuous financial status impact the care she received either before or during that sudden, tragic illness? Was there an unrecognized birth defect, something about her heart, that made it go so badly so fast? Was there an autopsy? But Hart shuts this impulse to seek answers down, beyond the two frames that describe how, in the throes of emergency, the parents had briefly stood accused: “There was questioning in a closed room.” Beyond this point we are told nothing of the reason for Rosalie’s death, and instead are thrown into acute grief with Hart and his wife. The flash of lightning that was Rosalie’s death, from the 911 call to her parents holding her as she died in the hospital less than 24 hours later, becomes the mysterious pivot around which the book revolves.

Over the course of the ensuing chapters, which cover several weeks, Hart and his wife leave their home to stay with friends, resolve their difficulties with selling their New York apartment, attend a grief retreat, and travel to help assuage the pain that comes from marking Rosalie’s second birthday and Christmas without her. Hart explores this time through a montage of images, films, writing, comics, and songs. The images arrive in the text as they might have in the author’s life, layered over each other and often without literal connection, but nevertheless pulling us along in the boat (a recurring scene from Hart’s previous work, a couple in a raft, being pulled down an endless river) toward a resolution that honors Rosalie’s memory and her mark on the world. The book’s opening chapter had centered on an image from one of Rosalie’s favorite films, Hayao Miyazaki’s My Neighbor Totoro, in which an acorn grows into a large oak overnight. It ends with another act of magic, a small child’s “baby kiss” signifying Hart’s passage over the threshold to healing.

Though Hart’s book has a (somewhat) happy ending — these parents stay together; improve their financial situation; and, we learn from the dedication, have another child — it is primarily an exploration of grief, and its focus is the wonder you can regain if you leave your wounded heart out in the air and sun.

¤

Many of my colleagues in health professions education use material outside of traditional science and clinical medical disciplines, particularly literature and visual art, in curricula designed to improve doctors’ “bedside manner.” Rita Charon, a physician with a PhD in English literature, has even founded an academic movement, Narrative Medicine, around one branch of these activities. That’s all well and good, but I can’t help but notice that at the core of these efforts in medical education the fundamental clinical gaze remains intact. Educators hypothesize that medical students or new doctors suffer some lack (of empathy, of humanism, of tolerance for ambiguity) that can be remedied by exposure to literature or other arts. I am just as skeptical of this assertion as I am of the latest randomized, double-blind, placebo-controlled trial, and I like to think that this skepticism makes me a safer doctor.

As a health professional, an insider, I have had more than the average glimpse into the tragedies that befall people. But I am also a mother, a daughter, and a writer, and these components of my identity affect my own experience of these works as much as my practice of medicine does. That said, I can see the value of these works for my students — not necessarily because I think they could improve some nascent clinical skill, or build resiliency and inoculate medical students against burnout, but simply because art is good for you. In ways that are both rational and mysterious, I believe this to be true.

In Aliceheimer’s and Rosalie Lightning, health care providers, the health system, and even to a certain extent biological processes are non-present. I suspect that this is the case not because there weren’t loads of health professionals quietly working as their best selves in a system that (mostly) supported patients’ needs, but rather because these are books about healing after grief and, on balance, the formal health system offered little help with such healing to Alice’s and Rosalie’s families. Despite this, however, these books helped enhance my understanding of families’ experiences of illness and loss. Their insights now inform my perspective as a doctor — but also as a daughter, a mother, a human.

Abigail Zuger, a physician and columnist for The New York Times’s science section who has been critical of illness memoirs like Walrath and Hart’s books, writes,

Few of these efforts rise to the level of great literature, but that may be beside the point. Should memoirs of illness be held to the same standards as other writing? Or do reader and writer form a different relationship when the health crisis of one becomes the theater of the other, a relationship in which a reviewer has very little business meddling?

Zuger suggests that illness memoirs provoke strong mirroring that causes readers to sort themselves into two groups: those who identify with the suffering, and those who gratefully cannot. (She calls the latter “there but for the grace” readers.) Zuger argues that because of this sorting, pathographies do not function as other works of art might. Here she is sympathetic to the challenge of critiquing personal work — a viewpoint that, one might argue, is relevant to criticism of creative nonfiction in general, and not merely stories of illness and grief. But I also think that she has fallen too easily into the doctor’s mode of thinking that comes as second nature to those of us acculturated into the profession. She doesn’t want to say illness memoirs are good or bad, and instead suggests that good or bad is the wrong scale. But she weighs their value nonetheless, on the basis of their usefulness.

Suzanne Koven, a physician who works as Massachusetts General Hospital’s writer in residence, takes the question of how illness memoirs relate to clinical work an important step further. “The best illness memoirists,” Koven writes, “are the worst historians, rejecting standard medical narratives and creating their own.” Illness memoirists don’t answer doctors’ questions the way doctors would like. Instead they defy the medical profession’s perspective on what story is. In this way, they make art.

Both Aliceheimer’s and Rosalie Lightning are exemplary in their reminders of the loveliness and complexity of our human world. The newly verbal toddler marvels at the moon playing hide-and-seek as she rides home on the back of her father’s bike. The septuagenarian suffering from Alzheimer’s has the words to express feelings but has lost many of the filters that keep us from being honest with our families. Rosalie and Alice are rich, complete characters, in ways that extend far beyond their illnesses. They mirror people who populate our own lives, but are not so often given center stage in literature, nor cherished, nor given authority. While both books focus on family members dealing with decline and death, they also remind us of the magic and wonder that is found if we continue to challenge the way we look at the world. What elevates a work from mere excellent journaling to a form of art is the degree to which the reflective lens tilts in many directions, offering multiple perspectives in which a reader can share. This is, perhaps, at least one reason why art is good for you.

Art works — for physicians, as for everyone — by pushing us to think outside of our habitual patterns. Those of us who do clinical work often have a broader, though more superficial, experience of illness and grief than do our patients, by virtue of our job. That is, if we are listening. But still we listen with our clinical selves, even those of us who spend time outside of clinic trying to compost our experiences into creative work. Art that reminds of us of our own lack of understanding, art that encourages us to look and listen, is essential for those of us in professions that society has empowered to care for those who are suffering. I am grateful for creators like Walrath and Hart who make art from experiences like those my patients face. Their works remind us that, even during the throes of illness or grief, when the air is filled with questions, fear, and sadness, there are slivers of time and space where room can be made for wonder.

¤

Lynda Montgomery is a family physician and writer. She is an assistant dean of student affairs and associate professor of Family Medicine and Community Health at Case Western Reserve University School of Medicine.