Monster is a unique, moving meditation on disability, medicine and caregiving. In this collection of linked essays and poems Jeneva Burroughs Stone reflects on hubris; scientific advances and their significance to humanity; and the responsibility of a creator to her creation.
Jeneva says, 'My son Robert has been an on-going inspiration to me, and pursuing diagnosis and treatment for his rare condition has illuminated science and medicine in ways I'd not thought possible. Robert has a very rare form of dystonia, DYT 16, which was diagnosed by whole exome sequencing 14 years after he fell ill. He's the only reported case in the U.S. and only 1 of 11 worldwide. Despite his life-altering physical disabilities, Robert has an infectious personality, even though he cannot speak: mischievous, funny, determined. I'm so glad he's allowed me to write about him.'
I first met Jeneva online, back in the days when Dave Bonta and I were co-editing qarrtsiluni. We also had a Vermont connection: she grew up near Burlington, VT, graduated from Middlebury College, and now lives in Bethesda, MD. Her work has been honored with fellowships from the MacDowell and Millay Colonies. I'm delighted to be working with her again, and honored to be able to publish this beautifully-written book.
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(Author photo: B. Farbo, illustration: E. Adams)
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