The Vestibular Disorders Association (VeDA) has concluded its annual Poetry-4-Balance contest, a creative initiative held in conjunction with National Poetry Month in April. This year, the organization received 21 entries from individuals across the globe, each sharing their personal experiences with chronic vestibular disorders through various poetic forms. The contest serves as a platform for patients to articulate the complexities of living with "invisible" illnesses—conditions that often lack outward physical symptoms but profoundly impact a person’s balance, vision, and cognitive function. This year’s top honors were awarded to Gemma Clarke, Samantha H., and David Pavia, whose works highlighted the themes of resilience, the struggle for diagnosis, and the emotional toll of chronic dizziness.
The Poetry-4-Balance initiative is part of a broader effort by VeDA to increase public understanding of vestibular dysfunction, a condition that affects millions but remains frequently misunderstood by the general public and, at times, the medical community. By utilizing metaphor, rhythm, and narrative, participants transformed clinical symptoms into relatable human experiences, fostering a sense of community and validation among those navigating the often-isolating journey of vestibular rehabilitation.
Understanding the Clinical Landscape of Vestibular Disorders
To understand the significance of the Poetry-4-Balance contest, one must look at the prevalence and impact of vestibular disorders. According to data from the National Institute on Deafness and Other Communication Disorders (NIDCD), approximately 35% of adults in the United States aged 40 years and older—roughly 69 million people—have experienced some form of vestibular dysfunction. These disorders originate in the inner ear and brain, which together control balance and eye movements.
Common diagnoses represented in this year’s poetry entries include Benign Paroxysmal Positional Vertigo (BPPV), Persistent Postural-Perceptual Dizziness (PPPD), and vestibular migraines. Symptoms often described in the entries include vertigo (a sensation of spinning), disequilibrium (unsteadiness), and tinnitus (ringing in the ears). The chronic nature of these conditions can lead to secondary psychological impacts, including anxiety and depression, as patients grapple with a world that literally and figuratively feels unstable.
Analysis of the 2024 Winning Entries
The winning poems offered a raw look at the different stages of the vestibular journey, from the initial confusion of symptoms to the long-term adaptation to a "new normal."
Gemma Clarke’s winning entry, "Flamingo Days," utilizes the metaphor of a flamingo to represent the precarious balance of the patient. Clarke describes the progression of symptoms from what was initially dismissed as anxiety to a "constant rocking" sensation. Her poem touches on the "brain fog" and "zigzag vision" that often accompany vestibular migraines, as well as the frustration of seeking medical validation. The flamingo metaphor is particularly poignant, as the bird is known for its ability to stand on one leg; Clarke notes that while a flamingo may fade in color when worn down, it can eventually regain its vibrant pink hue with time and care—a metaphor for recovery and hope.
Samantha H.’s "The Unsteady Loop" provides a chronological account of trauma and its aftermath. Her poem details a journey beginning with a concussion, followed by the onset of migraines and eventually the "vestibular haze" of PPPD and BPPV. Samantha highlights the cyclical nature of these disorders, describing a "loop" of spinning and unsteadiness that leaves life "on delay." This entry resonates with many in the vestibular community who experience "comorbidities," where one neurological or physical trauma triggers a cascade of subsequent balance issues.
David Pavia’s "I call myself a burden" explores the social and emotional repercussions of chronic illness. Pavia describes the sensory overload of tinnitus—a "high wire hum" and "radio between stations"—and the physical sensation of the floor tilting. His work is notable for its honesty regarding the "grief" of lost productivity and the "bills that stack like a stone wall." Pavia captures the specific guilt many patients feel as their loved ones make adjustments to accommodate their illness, labeling himself a "burden" in the quiet, difficult hours of the night.
Chronology of the Poetry-4-Balance Initiative
The Poetry-4-Balance contest is timed to align with National Poetry Month, an event established by the Academy of American Poets in 1996. VeDA’s integration of this month into its advocacy calendar reflects a growing movement in "narrative medicine," where the act of telling one’s story is viewed as an essential component of the healing process.
The timeline for the annual event typically follows a standard trajectory:
- Call for Entries: Announced in early spring, encouraging members of the vestibular community to submit original works.
- National Poetry Month (April): The submission window remains open, during which VeDA shares historical and educational content regarding the intersection of art and health.
- Judging and Review: A panel reviews entries based on their ability to convey the vestibular experience and their creative merit.
- Announcement of Winners: Results are published on the VeDA website and social media platforms, providing a permanent archive of the year’s contributions.
Thematic Insights from Other Notable Entries
Beyond the winners, the 18 other entries provided a comprehensive look at the diverse ways vestibular disorders manifest in daily life.
Careen Hannouche’s "Despite the Dizzy" focuses on the challenges of motherhood. She describes the "guilt in the spinning" and the necessity of "mothering differently." Her poem highlights how children often become "anchors" for their parents, providing the emotional gravity needed to navigate a physical world that feels "floaty" and "unreliable."
Simon Mahan’s two entries, "Vincent" and "Whole in My Head," draw a historical parallel between modern patients and the artist Vincent van Gogh. Medical historians have long speculated that Van Gogh suffered from Ménière’s disease, a vestibular disorder characterized by vertigo and tinnitus. Mahan’s work emphasizes that while the symptoms remain the same across centuries, modern patients have the advantage of "improved prognosis" and "heightened care"—tools Van Gogh lacked.
Stana Peete’s "Navigating the Storm: A Journey of Resilience" offers a long-term perspective, detailing a nine-year struggle following an accident. Her poem serves as a testament to "determination that would not sway," even when the "world may spin and tilt askew."
The Role of Expressive Arts in Vestibular Rehabilitation
The Poetry-4-Balance contest highlights a critical but often overlooked aspect of vestibular rehabilitation: the psychological and cognitive processing of the disorder. Medical professionals are increasingly recognizing that while physical therapy (such as Vestibular Rehabilitation Therapy or VRT) is essential for retraining the brain to process balance signals, the emotional trauma of losing one’s sense of stability must also be addressed.
Writing poetry allows patients to:
- Externalize Symptoms: By naming the "sway" or the "fog," patients can separate their identity from their diagnosis.
- Communicate the Invisible: Since vestibular disorders lack visible markers like a cast or a bandage, poetry provides the "metaphor and rhythm" necessary to explain the experience to friends, family, and doctors.
- Regain Agency: Chronic illness often feels like a loss of control. The structured act of writing allows a patient to take control of their narrative.
Broader Implications and Future Advocacy
The success of the Poetry-4-Balance contest suggests a significant demand for advocacy programs that go beyond clinical data. For the millions of people living with these conditions, the opportunity to see their "internal screaming" and "silently suffering" reflected in the words of others is a powerful form of validation.
VeDA’s commitment to this annual event underscores the organization’s mission to "restore balance" to the lives of those affected. By archiving these poems, VeDA is building a qualitative database of the vestibular experience, which can be used to educate healthcare providers about the patient perspective.
Looking ahead to future iterations of the contest, the organization expects continued growth in participation as digital communities for vestibular patients expand. The 2024 entries have set a high bar for emotional honesty and creative expression, ensuring that the "invisible" struggle of vestibular disorders continues to be seen and heard through the power of the written word. As Gemma Clarke noted in her winning poem, the goal for many is to "find that pink again"—to move from a state of being "dimmed" by illness to a state of recovery and new-found strength.
