After fourteen years of undiagnosed symptoms, Jeneva and Roger Stone’s son Robert was found to be the 9th reported case, worldwide, of a rare genetic disorder, Dystonia 16. Since he was thirteen months old, he has been challenged by disabilities in mobility, speech, feeding and overall muscular deterioration.
Jeneva describes herself as an “essayist, poet, blogger of the rare & unknown, practical g/i nurse, interpreter of EOBs, queen of medical necessity letters, unlicensed PT, knowledgeable wheelchair mechanic.” Her many years of blogging and writing about the struggle she and her husband Roger have waged to allow their two children to thrive is a thoughtful narrative of a harrowing and fulfilling life caught in an often unfeeling, sometimes cruel, sometimes ferocious culture-- one that victimizes both the physically challenged and their caregivers.
Throughout, the narrative of her daily life has become defined by unpredictable crises: (WARNING: the following passage includes graphic and disturbing descriptions of a medical procedure)
She realizes she must replace the trach. Her son’s…
Roger goes to call 911. The nurse:
Robert was taken to the hospital in time. There was no lasting damage to either his stoma or trachea.
Jeneva’s posts often describe the reality of a family living with the constant expectation of crisis. But she also illuminates the perception of that reality as held by the institutions she and her family are supposed to rely upon.
In poetry, essays and blogposts, Jeneva's writing explores and challenges the way institutions and society impose a rigid narrative on caregivers. In a recent wide-ranging essay about Caregifted published by the Los Angeles Review of Books, she focused in particular on finding voice and authenticity in the face of this challenge. Among her tools, Jeneva said she "uses excess and digression to create a network of keywords that prioritize ambiguity, asking the reader to contemplate the paradox of narrative control and reader reception in the service of disrupting preconceived notions."
She goes on to quote a caregiver from the upcoming Caregifted documentary Undersung, by Adam Larson, who describes the fundamental disconnect that long term caregivers experience when dealing with chronic conditions:
Jeneva’s poetry and essays are widely published. She was a 2012 MacDowell Fellow and is working on a memoir.
About the Caregiver Blog of the Week Award
The Caregiver Blog of the Week Award will recognize the most outstanding, beautiful, uplifting, painful and/or moving story of the week blogged by a caregiver.
Caregivers are the unsung heroes of our world. Caregivers who not only do the more-than-fulltime work of caregiving but also write and share their experiences with the world deserve to be recognized and honored. Each week our team will sift through the caregiving blogosphere and select a winning blogger, blog or blog post to be honored at CAREGIFTED.ORG. Email us at firstname.lastname@example.org to nominate a Caregiver Blog of the Week.