The Edited Tongue: A Family's Year with ALS, by Scott LaMascus

Poetry, chapbook, 40 pages, from Bottlecap Features.

This medical memoir in verse arcs across a family’s challenges with late-onset ALS. The poems grapple first with the father’s literal loss of voice, then the frustrating search for a diagnosis, increased caregiving stress, and daily devastations of each new loss brought by the brutal disease called Lou Gehrig’s. Here the poet’s voice moves from grief through lyrics of humor, fantasy, lullaby and dirge. Hybrid and varied poem forms keep readers surprised, including the title poem, which selects as its foundation the prose of a 1990s-era medical-school study-card for ALS. Revealed editing marks allow the poem to contrast the textbook description of the disease with stark realities for patient and caregivers. Haiku-inspired poems punctuate the ALS year with grief-inflected peace and respite in an otherwise horrific progression. In one fantasy-laced poem, the point of reference for the father’s near-death experience is the prophet Ezekiel and his visions featuring celestial wheels and fiery chariots. Some poems trace quotidian life despite the diagnosis. In addition to care-giving, the family must prepare for tornado season. They must care for the cattle on their farm. The beauties and demands of each season roll onward. Amid it all, the family must find words and forms to mourn the man they know is dying. These poems seek such truths lyrically and with a poignant and articulate honesty. “You think you’ll know how to say goodbye” becomes their frank quest for a way to adequately toast a loved one’s noble and dignified passing. On the 162nd day after diagnosis, the poet declares his own goodbye and accepts the wounds of grief. Another poem references the ancient lore of Caladrius, the bird who watches over the sick bed and who controls the fate of patients.

This poet’s voice avoids the triumphalism that sometimes appears in medical memoir, but allows deep grief, biblical imagery, unique metaphors, memory and family history seep into readers’ understanding of the year’s experiences and the patient’s life. From the moment ofdiagnosis, when the “first bird lifts off”, to the patient’s many experiences of bodily loss and death, these poems carry us along with a neuromuscular disorder described simply and starkly in the medical community as “always fatal.” It is a sobering and tender progression, from diagnosis to mourning, but the search for recovery of his father’s voice through verse drives the poet forward, taking readers along with him.

“This stunning poetry gives voice to the voiceless. For everyone who has lost someone to this cruel disease, Scott LaMascus’s words bring a healing truth and beautiful compassion.”

—Colette Freedman, author of Sister Cities, The Affair, The Last Bookstore and The Thirteen Hallows

“Poetry makes nothing happen, or so the saying goes, but how about the opposite—what makes poetry happen? A new love, travel, politics, no doubt, but how about terminal illness? Chronicling his father’s struggle with ALS and its effects on their family, Scott LaMascus has written a book of moments lost and regained: a script for a “tender tragedy of quotidian love.” Even though an ALS diagnosis is a death sentence—first goes the throat, then the voice and the lungs, “the very heart of being”—what’s left when “silence opens” is nothing short of a miracle. Like Seamus Heaney, LaMascus refuses to cut corners while wrestling with fate and what some call the human condition, making the best use of his “godforsaken pens.” These beautiful and moving poems are testament to how words can help us make sense of the direst of circumstances.”

—Piotr Florczyk, author of Dialogue and Influence: Essays on Polish and American Poets

“LaMascus constructs a moving poetic collage that speaks to the complexities of accompanying a loved one through the end stages of ALS, while recognizing the caverns of resonance that echo through the silence—the things a caregiver sees and remembers and draws from that disease cannot fully usurp when affiliation is fueled by love and memory so steel strong and lasting. These beautifully written vignettes explore the liminality of the terminal.”

—Liz Baxmeyer, author of Root & Bone and founding Editor-in-Chief of The Calendula Review: A Journal of Narrative Medicine.

"These poems ache with grief, yes, but also with a deep, enduring tenderness—between family and land, hammer and nail, father and son. LaMascus, through his own exploration of language, finds meaning and beauty in the silences: of illness, of death, of a father's quiet temperament. There is so much to feel here, it's overwhelming, in the very best of ways."

—Grant Chemidlin, What We Lost in the Swamp

“Amyotrophic lateral sclerosis is a devastating disease. It is the one that we doctors hope we are wrong about. Scott LaMascus's poems provide insights to the power of naming the diagnosis and to the courage as well as the fear of facing the incurable. This book reminds us that medicine does not always come in the form of a pill and that the arts can provide comfort to the soul.”

—Nicole C. Bowden, DO, board certified in neurology.

Scott LaMascus is a writer, producer, and public-humanities advocate in Oklahoma City whose debut collection of poems, Let Other Hounds, is forthcoming from Fernwood Press. Selected by judge Jackson Holbert for the 2024 Idaho Prize for Poetry long list, the poems break silence after fifty years to explore the aftermath of a serial pedophile in the small-town church of the poet’s boyhood. His poems about rural Oklahoma were recognized with the 2024 Bill Holm Witness Prize. His Ph.D. in literary studies is from the University of Oklahoma (1996) and his MFA is from Antioch University, Los Angeles (2024). He is professor emeritus at Oklahoma Christian University and director of the McBride Center for Public Humanities, which hosts free, public events with national writers as well as a biennial writers festival. He is on the advisory board of the Jeane Hoffman Smith Center for Film and Literature at Oklahoma City University. He serves on the board of the Federation of States Humanities Councils and served more than a decade on the board of the Oklahoma Humanities. His poems may be found in Bracken, Red Ogre Review, Epiphany, The Calendula Review, The Pennine Platform, Red Door and others.