Despite Virginia Woolf’s (12) famous proclamation that a “poverty of the language” exists in the description of illness, the most common form of pathographies is likely literature. Woolf’s essay On Being Ill argues that illness, compared to topics such as grief and love, remains rarely written into narratives due to the vocabulary itself. Yet, Carel’s work focuses on a more acute limitation. Language in books inherently offers limited bearing on temporality and pacing. While it is true that skilled authors can decide the pace of paragraphs, quickening tension with staccato and parataxis, the reader is ultimately given control regardless. As Roland Barthes (11) writes in The Pleasure of Text, “the author cannot predict tmesis: he cannot choose to write what will not be read.” In other words, the writer’s intentions matter little if a reader decides to skim over what they deem to be unimportant. Thus, the act of writing itself involves a willful relinquishment to the reader, and this act of surrender betrays a core tenet of the illness-experience: removal from control, particularly over time and space.

Video games complicate this dynamic, since some strip the very control Barthes describes back out of the player’s hands. Perhaps no game better exemplifies this removal of player control, especially over time, to depict illness than Before Your Eyes, released in 2021 by GoodbyeWorld Games. Before Your Eyes is not a typical video game. At no point does the player use their hands to control the game. Rather, the opening minutes require the player to set up an eye-tracking system, which lends itself to a simple conceit: with each blink in real life, once a metronome-object appears, time passes rapidly within the video game.

The first half of the game acts as a type of memory play. The main character, Benjamin, whose eyes the player inhabits, awaits judgment after death and must recount their life story to a mythical Ferryman to continue to the afterlife. The scenes begin playing out. Blink – Benjamin, as a baby, playing with rubber ducks. The scene plays out, then a metronome begins ticking down. Blink – watching parents argue about money. Blink – a piano recital. Blink – nervousness about talking to a crush. Evoking how memories work in real-life, each of these moments has a fleeting quality to them, as these scenes can only last if the player does not blink. Life goes by in a blink of an eye, literally.

While this perspective on memory alone makes Before Your Eyes an intriguing musing on memory, the second half of the game recontextualizes what comes before it in the context of medical humanities. As the scenes continue to play out, eventually Benjamin becomes a highly successful musician and artist, garnering worldwide acclaim. Yet, the story increasingly becomes fantastical, until it’s revealed that the story up to this point has been false. Rather, Benjamin died at 12 years old due to an unspecified terminal illness. The game plays out again; this time, the scenes are of Benjamin confined to his hospital bed. Blink – a growing illness. Blink – his parents visiting him at the hospital. Blink – dreaming of playing the piano. Blink – a fading interaction. In this second half, the scenes become ever more fleeting as the metronome signaling the scene is ready to pass appears more rapidly, triggering in the player a desire to avoid blinking. Often, before a moment can conclude, one blinks; time progresses, closer to death.

Before Your Eyes demonstrates the ability of other mediums, particularly video games, to use interactivity to disrupt typical temporality. This technique is not unique to Before Your Eyes by any means; the works of Samuel Beckett employ a similar technique of stripping audience control to simulate the constricted present Carel describes. For example, Beckett’s Not I (1972) features a disembodied mouth that delivers a fragmented monologue about past trauma at a pace too fast for an audience to fully process, let alone control. In video games, Red Dead Redemption 2’s protagonist, Arthur Morgan, develops tuberculosis over the game’s final chapters, which alters gameplay mechanics, including reducing stamina. As Marshall McLuhan famously argued, a medium’s structure shapes the way it delivers experience, independent of its content. Removing description of illness in favor of depicting its phenomenology, whether that is through Beckett’s compression of time or Red Dead Redemption 2’s diminishing of gameplay abilities, aims to cause the audience to experience illness. Before Your Eyes heightens both of these experiences, for time and space are tied to the player’s physical body, as occurs in sickness. In binding the passage of time to the player’s own involuntary blinking, the player’s body becomes a mechanism of failure. Thus, the player is made to inhabit Carel’s claim that illness is lived from within the body rather than observed from outside it. While literature can recapitulate the experience of symptoms, it cannot impose the conditions of it. Before Your Eyes suggests that the truest representation of illness may not be a representation at all, but an imposition of the phenomenological conditions of illness.

References:

Barthes, Roland. The Pleasure of the Text. Macmillan, 1975.

Carel, Havi. Phenomenology of Illness. Oxford University Press, 2016. Silverchair,
https://doi.org/10.1093/acprof:oso/9780199669653.001.0001.

McLuhan, Marshall. Understanding Media: The Extensions of Man. MIT press, 1994. Google Scholar,
https://scholar.google.com/scholar?cluster=4603169387763961023&hl=en&oi=scholarr.

Woolf, Virginia. “On Being Ill.” Family Business Review, vol. 6, no. 2, June 1993, pp. 199–201. SAGE Journals,
https://doi.org/10.1111/j.1741-6248.1993.00199.x.

Web image by medhum.org

At age nine, first misdiagnosed and finally identified as having facial bone cancer (Ewing’s sarcoma), Lucy underwent several surgeries and more than two years of intensive chemotherapy and radiation treatments. Pain and nausea, anxiety and fear of more pain and nausea were only part of the ordeal. The young Lucy became aware of what it is to be severely, chronically ill. Her sisters behaved differently toward her: they were polite. “Suddenly I understood the term visiting. I was in one place, they were in another, and they were only pausing.” Even her father felt uncomfortable at her hospital bedside, and Lucy was relieved that he came infrequently.

But being at home was worse: in the hospital the other patients and the staff expected little from her and she felt no guilt or shame; amidst her family, she blamed herself for the tension, arguments over money, and her mother’s depression, even though these elements had existed prior to her illness. Her hair fell out and she became dimly aware that people were staring at her face. Nevertheless, “I . . . was naturally adept at protecting myself from the hurt of their insults and felt a vague superiority . . . . “

Well enough to return to school, Lucy’s disfigured face drew taunts from classmates; she understood finally that she was perceived as ugly and that she would not be loved. Only on Halloween, when she could mask her face, did she feel free and joyful, unconcerned about her appearance, “normal.” Her moods now alternated between despair, determination, and escapism. She became convinced that only facial reconstruction and a restored appearance would make life bearable.

During years of reconstructive surgery Lucy evolved complex rationalizations to give meaning to her suffering. Two anchors had stabilized her existence throughout the misery: a passionate adolescent love of horses, and an adult love of poetry. Eventually outward appearance and inner life became harmonious. “The journey back to my face was a long one.”

Unfortunately, Lucy’s story does not end here. At age 39 she committed suicide. Soon after, her close friend, writer Ann Patchett, wrote a book about their friendship, Truth & Beauty: A Friendship, published in 2003 (HarperPerennial).

Lucy Grealy Interview in 1994 (20 Min.)

Autobiography of a Face
Lucy Grealy
Houghton Mifflin 1994 Boston: 256 pages

1995 Whiting Award Winner in Nonfiction , Poetry: https://www.whiting.org/awards/winners/lucy-grealy
Web image generated from the book cover by Medhum.

The collection opens with a poem, “Dedication” (p.1), dedicating the poems that follow to those “dear friends” who share, and so understand, the sufferings of ongoing illness. The implication is that healthy people cannot, yet, truly enter that world and, in fact, “fear” those who must live there. Yet Silver’s poems are a way into that universe. Tender and fierce, the poems in this collection seem to arise fully formed from the deepest part of Silver’s existence. The poems in section I present us with the harsh realities of illness and the anticipation of loss. In the acknowledgements, (p.72), the author notes that the poems in this section are “in honor of my sisters with inflammatory and advanced breast cancer.” In “Advent, First Frost,” she likens that “feathered prophecy” to “a bowl of frozen tears” (p.6) and in “Stage IV,” she writes that she is “taboo, now,” that she and others use words that once embarrassed them, “courage, prayer, miracle.” Even so, she is aware that “Our passports have been stamped– / our wrists and collar bones have been marked” (p.7). In a lovely prose poem on page 11, she writes in memory of her friend, Susan: “Ulysses will sail the storms till he dies. And so, my dear ones, will we” (p.11), combining, as she often does, the reality of approaching death with hope, dignity, and strength. In “Leaving the Hospital” (p.23) and “On a Line from Virginia Woolf’s Diary,” Silver celebrates the return, even if temporary, to life: “And the day takes my body back simply, / the way a mother dresses her child” (p.14). For me, the most moving poem in this section is the title poem, “I Watched You Disappear” (p. 22-23). It is a litany of regret, loss, anger, and pain, related not in poetic images but in plain and deeply human language: “I hate spring, its prettiness. / Your heart kept beating. Why didn’t it just stop?” 

Section II consists of seven, short one-stanza poems based on images from Grimms’ fairy tales. It seems that the first two lines of each poem serve as metaphorical statements about the realities of advanced breast cancer. “Owl Maiden” begins “No transformation’s instant. / Her hair fell out first, replaced by quills” (p.29). “Strawberries in Snow” begins “Belief comes easily to the ill. / Miracles fall from their lips like gems” (p.31). And “The Flowered Skull” offers these opening lines: “The magician finds them, young or old, / mothers, maidens–to him–no matter–” (p.34). The final poem in this section is a tale told to her son, Noah. In “The Hazel Tree,” Silver is the mother who “died and grew into a tree,” “each nut a word she’d grown to tell her son / now that her speaking human voice was gone” (p.35).  

In Section III, she turns, as she did in her first collection, to poems about her family. She visits again the (actual) doors of her life (“Doors” p.39), expresses regret at being impatient with her son, “Ubi Caritas Deus Ibi Est” (p.41), and in other poems examines moments of her family life, especially those shared with her son, father, sister, and husband. This section’s poems rarely mention illness, yet as they share family stories, they hint at the inevitability of loss. The final poem in this section, “Sea Glass,” ends with lines that could be applied as well to the way poems might be born from the wages of a life: “Something salvaged, sunlit, / gem-like. Something saved / from the grinding into grit” (p.55).  

Section IV, like section II, contains only seven poems, three of them commentaries on paintings and, through those commentaries, observations on illness and suffering as well. “Late Renoir” speaks of how the artist painted to “smudge away doubt” and to submerge “the mutilations of war, his dead wife, / the black he banished from his palette” (p.59). The long poem “Valentine Gode-Darel (1873-1915)” is a reflection on the five paintings by Ferdinand Hodler that captured his lover’s sickness, decline, and death (p.60). “Portraits in the Country,” (page 63), offers a glimpse into the poet’s resignation and acceptance of death, a mindset supported by her faith in both the human and the holy: “But I will not rush to put down my sash. / Instead, I will turn the leaf of my book. See with what gentle gravity God / lets it hover, in balance, then fall to its side.” The book’s last poem, “The Firebird,” suggests that words, especially poems, might hold truths that sound louder than the approach of death: “The bell ringing in your throat will drown / out the train’s slow grieving” (p.67). 

These poems are beautifully crafted, often primal, and they touch the deepest reaches of personal illness and the shadow of mortality. Readers who have breast cancer or who have family or friends living with breast cancer, might find these poems difficult to read–others under the same circumstances might find them difficult and yet, at the same time, essential. For me, dealing with the reality of an aggressive breast cancer afflicting someone I love, these poems provide a window into an experience I can only observe from a distance, even if that distance is only an embrace away. These poems provide a portal into the emotions, fears, regrets, and pleas that might be hiding behind a patient’s or a loved one’s exterior of cheerful optimism and determination. We can’t walk the path that a woman with advanced breast cancer is traveling. But these poems help us be companions on the way. 

Miscellaneous 
“Strawberries in Snow” was first published in the Bellevue Literary Review (V12N1).  

Publisher Louisiana State University Press 
Place Published Baton Rouge 
Edition 2014 
Page Count 73 

A previous version of this review was published in the NYU Literature, Arts, and Medicine Database .  
Web image created by Medhum.org

Author George Scialabba ascribes his “exceptionally flimsy…shock absorbers” to his “constantly worried” parents (p.3). While studying at Harvard he becomes involved with a strict religious organization. After leaving that group he undergoes a crisis of faith and his first episode of depression. Paralyzed by self-doubt, he drops out of graduate school and begins a cycle of clerical jobs that are beneath his intellectual capability. After many years he gradually wins distinction as a freelance essayist. However, due to his incapacitating symptoms he never has a steady writing job and has difficulty attaining financial security.   

In his introduction, Scialabba tells us that “the pain of a severe clinical depression is the worst thing in the world. To escape it, I would do anything” (p.1). As attested to by the notes of his well-meaning psychiatrists and psychotherapists, he has diligently applied himself to a wide variety of treatments. Sadly, if anything he gets worse over time, and eventually requires electroconvulsive therapy.  

The task of wading through more than a hundred pages of treatment notes induces a feeling of helplessness. This gives us a taste of the author’s own experience of his illness. He often seems to get better or worse without rhyme or reason. Diagnoses come and go. At various times he has been called borderline, obsessive-compulsive, narcissistic or schizoid. He himself questions the literary quality of the notes, considering them “anti-writing” (p.7). Nevertheless, persevering through the material does yield insights for the reader.   

For one thing, the notes document changes in psychiatry over the past half century. The early note takers took their time, and their writing is thoughtful and descriptive. Later notes are comparatively terse and center on the patient’s response to medication. The author suggests that the change reflects a greater fear of litigation. The reality is multifactorial. Less attention is devoted nowadays to understanding a patient’s psychodynamics. Insurance companies pay for symptom relief and want documented results.  

Any sense of tedium the reader might feel from reading the author’s mental health records is made up for by his “tips.” Scialabba gives practical suggestions about pharmaceuticals, what to eat, and how to sleep. Sufferers of depression will be pleased to hear about these things not from a doctor, but from someone who has been through the same ordeal.  

In short, How To Be Depressed is a self-help book that is somewhat out of the ordinary, and whose flippant title belies its serious content. It provides an intellectual perspective on a devastating and common disease. 

Publisher University of Pennsylvania Press 
Place Published Philadelphia 
Edition 2020 
Page Count 146 

Web image created by Medhum.org
An earlier version of this review was published in the NYU Literature, Arts and Medicine Database. 

A MacArthur Fellow and author of several acclaimed novels, Antrim has previously published a memoir of his upbringing with his alcoholic mother. In this new memoir, flashbacks of childhood neglect and chaos are juxtaposed with the present day as he takes the reader through the acute phase of his illness: a lengthy hospitalization, a course of ECT, discharge from the hospital, rehospitalization, and eventual stabilization.  

The author considers his condition to be suicide, noting that “depression is a concavity, a sloping downward and a return. Suicide, in my experience, is not that. I believe that suicide is a natural history, a disease process, not an act or a choice, a decision or a wish…I will refer to suicide, not depression” (pp. 14-15).   

The book ends on a hopeful note. After several relationships that might be described as codependent, Antrim meets his current partner, whom he marries. He sees the roof of his building through his window and remembers a certain Friday in April but is comforted by the sound of his wife playing Chopin and Bach on the piano.  

This is an exceptionally brave book. Antrim does not attempt to whitewash his situation in any way. Surely it is humiliating for someone so successful to acknowledge he has been utterly debilitated. He loses track of time. He gains weight and cannot fit into his clothes. His new book is released, but he is in no condition to help promote it. At first, he objects to being called psychotic but eventually it comes as a relief to know he is understood. One Friday in April will be inspirational to others who have suffered to see how an accomplished person is reduced to being allowed to use his razor only under strict supervision.   

At times Antrim touches on the link between mental illness and creativity. If he had hoped the cathartic exercise of writing about his childhood would have stopped his illness he learns otherwise: “Writing had not stopped my dying. (p. 80)” At another point, his friends joke that his diagnosis “might enhance my literary reputation” (p. 115). Finally, in one of the more poignant episodes in the book, Antrim gets a call from the novelist David Foster Wallace and is encouraged to undergo ECT. He has an excellent response to that treatment, but later learns that Wallace has hanged himself.  

While a diagnosis of psychotic depression fits best with the range of symptoms the author manifests, his point about suicide as a distinct disorder is well taken. In fact, the most recent edition of the DSM (Diagnostic and Statistical Manual) took the major step of including Suicidal Behavior Disorder as a “condition for further study.” This corroborates the author’s experience and means that SBD might be included in a later edition. (see also https://www.frontiersin.org/articles/10.3389/fpsyt.2020.499980/full)   

Those who are looking for an exposé or critique of the mental health system will not find it here. Antrim credits his psychiatrists and the hospital with helping him get through an unbearable time. One Friday in April is a book that will give reassurance to people who have endured suicidal thoughts that if they persist they will get better.  

Publisher W.W. Norton & Company 
Place Published New York 
Edition 2021 
Page Count 141 

Web image from Wikicommons
An earlier version of this review was published in the NYU Literature, Arts and Medicine Database 

Actor Clark Middleton wrote this autobiographical dramatic monologue in collaboration with Robert Knopf. Stricken with juvenile rheumatoid arthritis at age four, Middleton enacts his early painful experience — painful physically and emotionally. He takes us through an adolescence complicated by physical difference, his interaction with medical professionals over the years, and his craving to become an actor. Middleton struggles with the medical establishment, the pain and humor of coming-of-age, and ultimate self acceptance. Eventually, he was able to have both hip replacement surgery and a career in theater and film. The play is funny, poignant, and instructive.

Miracle Mile was performed in New York City in Fall, 1997 at Theater Row. The New York Times review called the play, “an enriching chronicle of a man who refuses to let the world take him at face value.” Middleton performed his monologue at New York University School of Medicine and at other institutions. Clips of a videotape of the theater performance are available at this web site.

Archive Videos from the Play

Actor Information
Clark Middleton (actor/author) performed MIRACLE MILE Off-Broadway in the fall of 1997. He has appeared in Sam Shephard’s CURSE OF THE STARVING CLASS as well as Mr. Shephard’s CHICAGO at the Signature Theatre Company. Clark was in William Hoffman’s AFTER THE ORCHARD and performed MIRACLE MILE at the Invaluable Cape Cod Theater Project. He began his professional career performing with the late Geraldine Page in productions of THE MADWOMAN OF CHAILLOT, PARADISE LOST, and VIVAT VIVAT REGINA. Since that time he has appeared in more than 40 NYC productions, most notably at the New York Shakespeare Festival, The Public Theatre, LaMaMa and Circle Rep, where he appeared with Olympia Dukakis in THE HOPE ZONE. In NYC Clark has directed LONE STAR, OUR DALY BREAD, DOMINO COURTS, CALL IT CLOVER and KIDNAPPED. He also directed MARVIN’S ROOM at The Wayside Theatre in Virginia. Clark can be seen in the films BAIL JUMPER, STORIES FROM NEW YORK, THE CONTENDERS and DON’T SHOOT DARLING. Clark plays the forensics expert Ellis on NBC-TV’s LAW & ORDER. He is a native of Tucson, Arizona and a member of both the Lab Theater Company and the 42nd Street Workshop.

Clark died on October 4, 2020. He was 63 years old.

Director Michael Warren Powell
Leading Actors Clark Middleton
Video Courtesy of Michelle Bouchard
Original Date of Entry 07/12/06

An earlier version of this review was published in the NYU Literature, Arts, and Medicine Database (Litmed).

Web Photo by Alex Radelich