4. Cast of Characters
This dissertation has an ensemble cast of composite and real characters. As a literary and autoethnographic device, I have named and described the primary characters here (Ellis, 2004, 2018; Forber-Pratt, 2015). Composite characters combine actual persons and events to create exemplar cases, a common practice in autoethnographic and healthcare research. They are categorized by relationship to me and professional occupation.
VYSHALI or VY:
A queer thirtysomething Eelam Tamil American Ph.D. candidate in Communication, Information, and Media at Rutgers University. She has lived with widespread chronic pain, chronic fatigue, and post-exertional malaise since 2006. She was clinically diagnosed with fibromyalgia syndrome (FMS) in 2007 and myalgic encephalomyelitis (ME) in 2020.
ANJI:
Thirtysomething nondisabled thangachchi (younger sister) to VYSHALI. They have a close relationship and have lived together for many years. Although her career as a human rights lawyer requires her to travel, she has been present for VYSHALI at various points during her illness.
APPA and AMMA:
Father and mother to VYSHALI. Eelam Tamils from Batticaloa, Sri Lanka, they came to the U.S. for APPA's doctorate in Physics before the anti-Tamil Black July massacres in Sri Lanka, which prevented them from returning home. They eventually settled in the Midwest. APPA passed away of a neurodegenerative disease in 2017, with AMMA serving as his primary caregiver for years.
MARY:
A queer white woman in her early forties who met VYSHALI in Columbia's M.F.A. program in 2005, before VYSHALI was disabled. Living with pain herself, MARY was instrumental in VYSHALI's formation of a disability identity and a relatively painless wardrobe. She is also VYSHALI's literary agent and a key contributor to all of her writing projects. Along with her longtime partner SARA, she helped care for VYSHALI at several points during her illness.
SARA:
A fibromyalgic queer white woman in her early forties who met VYSHALI in 2005. MARY's longtime partner, SARA is a visual artist and Pilates instructor who has contributed audiovisual materials to this dissertation and has cared for VYSHALI's uyirmey (bodymind) with her words, her cooking, and massage therapy since they became friends.
JACK:
A white man and full professor with tenure in the Journalism and Media Studies Department at Rutgers University. As VYSHALI's doctoral advisor, JACK embraced her decision to write a digital dissertation and was accommodating during VYSHALI's flare-ups, appendicitis, and post-appendectomy recovery.
SUSAN:
A white woman and associate professor with tenure in the Journalism and Media Studies Department at Rutgers University. A member of VYSHALI's dissertation committee, SUSAN offered professional guidance and personal reassurance to VYSHALI during her academic, medical, and personal crises. She affirmed VYSHALI's desire to write a digital dissertation and drove her home from MARY and SARA's apartment after her appendectomy.
PANCHALI:
An Indian woman and full professor with tenure in the English Department at Columbia University. PANCHALI is a composite character combining several ableist academic figures of multiple races and ranks who dismissed or minimized VYSHALI's disability and/or refused to accommodate her. PANCHALI is designed to reference the unreasonable expectations that South Asian professors often impose on South Asian students specifically because of their shared ethnic background.
REBECCA:
A white woman and full-time writing program administrator (WPA). A composite character, REBECCA represents white women WPAs, department chairs, program coordinators, and senior professors who informed VYSHALI that her chronic illness meant she wouldn't succeed in academia.
NANCY:
A white woman and nurse practitioner at Columbia University's Health Services. A pseudonymized character, NANCY was VYSHALI's primary care physician from 2005-2007. NANCY believed VYSHALI's self-reported symptoms and referred her to as many specialists as needed to help her receive diagnosis and treatment.
DR. HUNT:
A white woman and psychiatrist in a private practice with 35 years of experience in the field. DR. HUNT is a composite character combining white, Latino, and Black men and women psychiatrists who dismissed VYSHALI's self-reported symptoms because she was well-dressed, articulate, and employed.
DR. BIRNBAUM:
A white Jewish woman, medical activist, and board-certified rheumatologist in a private practice with 35 years of experience in the field. A pseudonymized character, DR. BIRNBAUM was the first doctor to believe VYSHALI and diagnosed her with fibromyalgia in 2007. With relatives who survived the Holocaust, DR. BIRNBAUM also understood the effects of intergenerational trauma.
DR. ANDERSON:
A white man and board-certified orthopedic hand and wrist surgeon with 10 years of experience in the field. A pseudonymized character, DR. ANDERSON treated VYSHALI for peripheral neuropathy and tendonitis from 2006-2007. He dismissed fibromyalgia as a "wastebasket diagnosis" and implied doctors who believed in it were incompetent.
DR. KYRIOS:
A white woman and neurologist in a private practice with 12 years of experience in the field. A pseudonymized character, DR. KYRIOS ordered and interpreted brain MRIs at VYSHALI's request, stockpiled medication samples for VYSHALI when her prescriptions were cost-prohibitive, and understood that nonwhite women do not get heard.
DR. JIANG:
A Chinese American woman and board-certified internist with 21 years of experience in the field. DR. JIANG is a composite character combining Chinese American women rheumatologists and internists who treated VYSHALI from 2014 onwards. Brisk but empathetic, DR. JIANG accepted VYSHALI's "fibromyalgia" diagnosis and only needed to hear a handful of VYSHALI's symptoms before ordering the abdominal CT scan that led to life-saving surgery.
DAWN:
A white self-identified Kama'aina woman and a licensed acupuncturist in New York with 12 years of experience. A pseudonymized character, DAWN once suffered from chronic pain and treated VYSHALI for carpal tunnel syndrome, fibromyalgia, and post-operative abdominal scar tissue and gastrointestinal issues.
MITCH:
A white man and accredited physician assistant (PA-C) in emergency medicine with six years of experience in the field. A composite character combining several clinicians, MITCH's unwillingness to listen and imposition of his own worldview on VYSHALI's condition nearly killed her.
DR. TAMAS:
An Indian American woman and fifth-year radiology resident in emergency medicine. A pseudonymized character, DR. TAMAS was named for the eponymous guna (intrinsic character trait) in Sri Ramakrishna's "Parable of the Three Robbers." Tamas reflects inertia, idleness, laziness, and impulsive action. DR. TAMAS ignored VYSHALI's distress during a transvaginal ultrasound that was so painful it simulated the experience of rape.
DR. SATTVA:
An Indian American man and board-certified general surgeon with expertise in minimally invasive laparoscopic surgery. A pseudonymized character, DR. SATTVA was named for the eponymous guna (intrinsic character trait) in Sri Ramakrishna's "Parable of the Three Robbers." Sattva reflects compassion and virtue. DR. SATTVA happened to be the on-call surgeon in the emergency medicine department when VYSHALI needed care. He listened to her, agreed to operate, and labeled her reliable in her medical record, saving her life and preserving her future care.
DR. ZAGARA:
An Arab American woman and rheumatologist specializing in connective tissue and autoimmune disorders with 20 years of experience in the field. A pseudonymized character, DR. ZAGARA began treating VYSHALI in 2020 and was the first physician to explicitly tell her that her subjective assessment of her uyirmey mattered.
SCENE
The New York Metro Area.
(–18. Syndromes)