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

They asked, again, for DNA

—Day 155

Have you registered, sent samples, helped

us explore this horrible disease?

You mean the terror on Dad’s face 

only a little less profound

than that other one,

deep in his strand-self?

Ninety percent of cases are non-familial,

so won’t you help us find a cure?

That deep thing we will keep, thanks,

locked away, to ourselves.

We have three experimental drugs

and can offer them free or deeply discounted.

Dad’s last words spoken were,

“No. More. Doctors!”

ALS is always fatal, so our care is for comfort,

but we can find a cure if we have better data.

I’m 62, my sons 25 and 28. How could

we live any deeper? Faster?

Any clearer than we lived before

last year? What if we had known?

What could possibly help the me

from before these whirlwind

losses had its awful name?

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

---