WRITERS and Our Program's Mission
Marcel Proust, Mark Twain, Brontë sisters #1-3, Flannery O’Connor. Some of the world’s best-known authors battled chronic illness, and even wrote masterpieces as convalescents. 1984 was written while George Orwell battled a form of tuberculosis that had him frequently in and out of the hospital. Anton Chekhov, master of the short story, coped with chronic tuberculosis for almost his entire life. Fyodor Dostoyevsky suffered from a rare and severe form of epilepsy, and used his constant seizures to inspire characters in Crime & Punishment and The Brothers Karamazov. Jane Austen wrote Pride & Prejudice while she was ill with a condition that would later be recognized as Hodgkin’s lymphoma.
We here at the WRITERS Program believe that illness, particularly chronic illness, can often inspire great works of literature—and that writing can serve as a powerful tool for children and families coping with chronic illness. WRITERS offers a unique opportunity for young patients, siblings and parents: to create and publish an original work of fiction or nonfiction, while simultaneously forging a trust-based, supportive relationship with our writing therapist and our volunteers. We provide 1:1 and small-group writing and story-telling experiences for the patients, siblings and families who receive care in the Neely Pediatric Hematology-Oncology Clinic, on the hospital’s In-Patient Unit, and in the Neely Bone Marrow Transplant Unit.
In each and every writing experience, we take a project-based and individuated approach. We tailor the writing and story-telling experience to the individual–because children and families use the program in such boundlessly-different ways. Some may use writing as a distraction or a pleasant diversion from treatment. Others may use it to educate or inform classmates or community members about a given health condition. Some may use the writing experience as a form of catharsis and vent feelings or fears about treatment. Others may use it as a procedural coping tool—a child may ask to work on his book’s jacket and cover art while being sedated for a procedure, for example, or a child may ask to have portions of a story read aloud during radiation treatments.
Many young patients wish to write directly about their health experience—to write a memoir about their diagnosis or course of treatment, for example, or to create a collection of tips and suggested coping strategies for other children in treatment. Other young patients may have zero interest in writing directly about their health experience, but may choose to write a work of fiction or fantasy about that alien masquerading as a local elementary school principal. Siblings, particularly sibling bone marrow donors, may wish to write about their experiences in the hospital—or the sometimes-profound difficulties of being the “well child” in a family coping with illness. Parents may wish to assemble beautifully-curated photo albums of their favorite family experiences, or to create a unique keepsake for their child—to write an original and personalized picture book for a child who loves bed time stories. In some cases, particularly around end-of-life care, families may wish to use book-publishing as a legacy-making project.