For people living with sleep disorders like narcolepsy, stigma and isolation are common experiences. Low awareness and misconceptions of sleep disorders are often the root issue of these experiences. At Project Sleep, we strive to raise awareness and dismantle misconceptions. One powerful way to understand the lived experiences of those with narcolepsy is through the voices of individuals within the community.
In this post, we highlight three compelling new books written by authors from the narcolepsy community. These works not only provide invaluable insights into the complexities of living with narcolepsy, but also inspire us with their resilience and transparency.
Kerly Bwoga is a Project Sleep Rising Voices speaker and patient advocate in the UK living with type 1 narcolepsy with cataplexy, sleep apnea, periodic limb movement disorder, and REM sleep behavior disorder. She founded the peer support group Naps4Life (Instagram: @napsforlife.narcolepsy) and recently started a new podcast called Narcolepsy Navigators (Instagram: @narcolepsynavigatorspodcast).
In Kerly’s book, “you’ll discover images of my life as well as a carefully curated collection of sleep-related mandala designs, each paired with inspiring sleep quotes to guide your thoughts and reflections. These intricate patterns are more than just art; they’re a gateway to tranquility, designed to help you unwind, reflect, and find peace in the quiet moments before sleep.” In addition, the book serves as a dream journal and includes a space “to record, remember, and reflect on your dreams.” Purchase My Narcolepsy Life on Amazon.
In Narratives of Narcolepsy in Everyday Life: Exploring Intricacies of Identity, Sleepiness, and Place, Nicole Eugene draws on in-depth interviews, participant observation, and field notes to examine life with narcolepsy. She particularly focuses on how certain socially-defined places play significant roles in determining the meaning of sleepiness, medication side effects, and other narcolepsy symptoms. Eugene also includes one autoethnographic essay that explores her own experiences with narcolepsy as a Black woman, refracted through the lens of the various places where sleepiness may arise. Purchase Narratives of Narcolepsy in Everyday Life.
Nicole Eugene, PhD, is a communication scholar, disability advocate, and scholar-artist, as well as an Assistant Professor of Communication at the University of Houston-Victoria. Diagnosed with narcolepsy as a teenager, Dr. Eugene’s experience as an undergraduate with narcolepsy inspired her Master’s program research: the social and cultural understandings of sleepiness. Today, Dr. Eugene’s research embraces the intersection of health communication and disability studies, particularly hidden disabilities. Learn more about Dr. Eugene in our Black History Month Sleep Leaders series.
Blood, Sweat, Tears is a “collection of stories by 26 women+ writers about the experience of being in a female body on trail. Stories range from hiking, backpacking, thruhiking, mountaineering and trailrunning. These are stories of challenge, beauty, and self-knowledge the likes of which can only be found in the adventures we seek outdoors.”
Narcolepsy community leader, writer, and artist extraordinaire Tatiana Maria Corbitt authors a section in this book titled, “As Nature Is.” The section features Tatiana’s experience with narcolepsy in the outdoors and includes two of their favorite original poems.
Edited by Christine Reed, a trail running/thru-hiking athlete with dysautonomia (POTS), Blood, Sweat, Tears can be purchased on the Rugged Outdoorswoman online store. Be sure to put “narcolepsy” in the purchase notes so that Tatiana can be partially credited for any sales.
Curious Corvid Publishers will publish Tatiana’s first poetry book, Wild Brujeria, on August 17th, 2024. This book includes many references to living with narcolepsy. Tatiana is currently writing an autobiographical fictional fantasy novel starring a queer and narcoleptic ex-scientist who hikes into a new world. Release date to be determined. Learn more about Tatiana in our LGBTQ+ Pride Month Series.
As we reflect on the stories shared through these powerful books, it is clear how vital it is to continue the conversation about the challenges faced by those living with sleep disorders. The narratives of these authors remind us of the importance of empathy, understanding, and support for individuals facing sleep and other health or social issues.
Thank you to Kerly Bwoga, Dr. Nicole Eugene, and Tatiana Corbitt for sharing your lives with narcolepsy. This is so critical for raising awareness and fighting stigma. Your writing inspires and encourages others to join in on advocating for a world where sleep is a pillar of health!
Interested in writing about your experience with narcolepsy? Check out our Narcolepsy Nerd Alert: Narrating Narcolepsy! Also be sure to share what you think below.
