Abstract
Graphic medicine, defined as the intersection of comic art with the discourse of health care, has become increasingly recognized as a sub-genre of graphic literature (www.graphicmedicine.org). One beautiful example is Ronan and the Endless Sea of Stars, a moving memoir that gives the reader a unique perspective on the complex emotions and coping strategies of parents caring for a terminally ill child.
The book follows the author, Rick, and his wife, Emily, starting from the initial optimism and routine challenges of caring for their newborn son, Ronan. During Ronan’s first year of life, Rick and Emily notice his development begin to falter. They pursue a series of evaluations, ultimately leading to a devastating diagnosis of Tay-Sachs disease. As they learn to care for a child with special medical needs who will never develop normally or live beyond a few years of age, Rick and Emily process the news with contrasting coping styles. Both grieving the loss of their healthy child, Rick focuses on Ronan’s immediate needs, while Emily worries deeply about the future and longs to have another child. The burden of Ronan’s illness, along with their discordant approaches to coping, deeply strains their marriage, and they eventually separate, adding another element of loss to the story.
The contrast of beauty and tragedy encompassed in caring for a child with a terminal illness is immediately apparent in the cover illustration. Rick sits in an armchair with Ronan cuddled comfortably on his lap, floating together in an ocean with starlight reflecting on the water. They are strikingly alone and isolated yet also appear at peace. We learn that Rick’s place of comfort since childhood is imagining floating in space among the stars, an imagery thread carried throughout the book. Later, an unraveling brain is shown traveling through space, challenging the comfort of this imagined world. The sky of stars is ultimately reflected in Ronan’s eyes right before he dies.
Graphic literature uniquely helps the reader experience the characters’ thoughts and emotions. For example, as Rick and Emily play lovingly with Ronan after learning his diagnosis, the joyful smiles they outwardly show to their son are distinguished from an inset, where their faces reveal how they are truly feeling inside—worried, angry, skeptical. The illustrator also uses words symbolically to reflect their impact or significance. When Rick suggests to Emily that they wait to have another child to prioritize caring for Ronan, she tears off the word “wait” from the speech bubble and stares at it, weighing it in her hand, showing the agony she is feeling and the rift growing between them. When they decide to move to a new home, a small box with the word “Hopes” written on it is tucked on top of a pile of moving boxes. The reader can imagine the myriad hopes represented by that box—hope for a cure, a peaceful death, and a saved marriage.
The memoir succeeds at illustrating how Rick uses both magical thinking and humor as vital coping strategies. For example, in the prologue entitled “Not Actually There”, Rick travels around town by bicycle accompanied by Ronan’s shadow, dreaming of enrolling him in school. Rick’s joy experiencing this parenting milestone ends abruptly in an expression of frustration and despair as he acknowledges this narrative isn’t real. Rick also weaves in his own childhood fear of a sinister villain “Zarro”, based on the TV character Zorro, whom he believed took children away to a dark place. “Zarro” repeatedly appears in mirrors or windows as a roughly drawn cartoon when Rick’s thoughts are at their darkest, representing his deepest fears and uncertainties about what awaits Ronan.
The heaviness of Ronan’s illness is frequently offset by Rick’s pervasive humor and sarcasm. For example, feeling unprepared to manage Ronan’s disease progression, Rick imagines simply illustrated instructions to care for a dying child, like those in a poster to assist a choking victim. Ronan himself appears at times, donning a suit and tie, narrating or mediating the growing conflict between Rick and Emily. While humor may seem incongruent to the topic, we are reminded how it can exist in parallel with deep sadness without displacing it.
Rick’s recollection of physician communication is vividly depicted and informative. The first doctor who recognizes Ronan’s profound developmental delay expresses little emotion and avoids making eye contact when delivering this news, leaving Rick and Emily with agonizing uncertainty. They are drawn off to the side, watching as bystanders, representing how little control they likely felt. In a pivotal moment, a well-meaning ophthalmologist exclaims, “Oh Boy!” when detecting cherry red spots in Ronan’s retinae and hurries out of the room. The words hang ominously on the wall, replacing the letters on the eye chart, signifying how they haunt Rick’s memory of that visit. This sharply contrasts with Rick and Emily’s experience when the same doctor returns, sits unhurriedly, makes eye contact and compassionately explains Ronan’s diagnosis and prognosis.
The memoir concludes with Rick caring for Ronan at the end of life and finally navigating his grief and the meaning of their time together. While we briefly see Ronan with a nasogastric tube and supplemental oxygen at home, Rick dwells very little on Ronan’s last days, simply stating he doesn’t think Ronan “suffered much”. As Rick reflects on Ronan’s 1059 days of life, we understand he intended this book to be not about grief and loss, but about the meaning of Ronan’s short life, both to him as his father and existentially in the world.
I am always awed by the profound challenges parents and caregivers face as they grieve the loss of the healthy child they once envisioned while assuming the full-time responsibility of caring for their sick child. This dual burden is intimately shared by the author and affords us as palliative care providers a unique look into the caregiver’s experience. The memoir, a loving tribute to Rick’s son, will hopefully help other grieving caregivers as well as the clinicians who accompany them on this journey.
Footnotes
Author Disclosure Statement
No competing financial interests exist.