Welcome to Stories of HOPES! The short stories of this section of HOPES are fictional accounts inspired by the experiences of real families living with HD. They are not meant to be instructive or prescriptive, but to serve as artistic impressions of the social and familial impact of the disease. We have found them a useful way to stimulate discussion of HD and its implications with others. As always, we invite your comments on these stories.
– The Staff of HOPES
Bryan’s Dad is a story of a father becoming symptomatic for HD and the complexity of a family’s experience when dealing with the signs and diagnosis.
Marshall Moose’s Walk for HD is an illustrated children’s story about Marshall Moose raising awareness for HD in his community.
JHD Short Story Series is a series of fictional short stories from the perspective of someone with JHD. These works do not represent the experience of any one individual, nor do they aim to encompass the entirety of an illness experience such as JHD. Rather, these stories strive to capture and explore themes presented across different JHD and HD experiences through a collection of punctuated narratives. Hopefully, engaging with JHD through storytelling will allow readers to better empathize with, and understand the nature of, the experience of this illness.
Maladies of My Mind is a five chapters fictional account of a surgeon in Thailand and how she struggles to come to terms with the possibility of carrying the gene for an incurable neurodegenerative disease in a country where mental illness is a stigma. This story is inspired by interviews of Thai individuals affected by different mental illnesses, but it does not cover the entirety of a Huntington’s disease experience in Thailand. However, it aims to explore themes of social stigma in a country where mental illness is not often talked about.
HOPES is excited to present a non-fictional story section on our website! This section is meant to be an open space in which individuals affected by Huntington’s disease (patients, caregivers, family members, and friends) can share their experiences with HD in the form of anonymous text excerpts. We believe the sharing of narrative can have healing qualities and promote connectivity within the greater HD community.
SNAPSHOTS is inspired by the notion that without lived experience, it is often difficult to see more than mere glimpses into the lives of patients, caregivers, and loved ones affected by HD. This series of images and stories attempts to show more realistic glimpses into the inspirational life stories of those affected by HD.
Caregivers: Get a Dog! is a story about one couple’s positive experiences with dog adoption in the face of diagnosis.
After The Diagnosis is a short piece about the process of acceptance after receiving news of an HD diagnosis.
Stories can take the form of submitted text or transcribed, in-person interview. We are open to all forms and styles of writing. If you are interested in submitting a story or setting up an interview, please contact HOPES member Annie Rempel (firstname.lastname@example.org).