Scott LaMascus was privileged to serve on his father’s caregiving team during his battle against ALS (amyotrophic lateral sclerosis). He is the author of The Edited Tongue: A Family’s Year with ALS. He is a writer and public humanities advocate in Oklahoma City, USA. He is director of the McBride Center for Public Humanities at Oklahoma Christian University. We are proud to feature a selection of Scott’s poetry in support of ALS awareness month

Poetry by Scott LaMascus, writer, advocate and rare caregiver

Los Angeles—Bottlecap Press is pleased to announce the release of The Edited Tongue: A Family’s Year with ALS by Scott LaMascus. 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 also known as Lou Gehrig’s.

“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,” said Colette Freedman, author of a feature film about ALS.

Sister Cities” is Freedman’s novel, play, and screenplay about ALS based on her own family’s experiences of the neurogenetic disorder. The 2016 film stars Stana Kacic, Jesse Wexler, and Alfred Molina in a large and talented cast. 

These poems move from grief through lyrics of humour, 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, experiential realities for patient and caregivers. Haiku-inspired poems punctuate the ALS year with grief-inflected peace and respite in an otherwise horrific progression.

Carpenter’s Rest, A Lullaby

—Day 161

Sleep, you builders, sleep; 

Ready is the house you have built,  

cups in cupboards and the roof is dry.

The stove is blazing and the wood laid by.

The doors are sturdy and the walls are wide,

So sleep, Builder, sleep. Rest, don’t rise.  

The beds are cozy and the pantry full,

your work’s finished and your labors done,

hammers down now, with the drowsing sun.

Sleep, good builder, sleep.

Sleep, my builder, sleep.

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

Los Angeles: Bottlecap Press, 2025. ISBN 9781962390842 

Available to buy: https://bottlecap.press/products/edited

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