A Life Changed By Scleroderma: The Story of Jamaira WIlliams

Me. I am. I have. I live with Scleroderma.

It has been said that the revolution will not be televised, yet the land of stars and stripes, the institutionalized borders of chaos and havoc, faithfully premieres a black-and white documentary that exposes the revolving cycle of systemic hierarchy- structures that compromises uniformity rooted in experiences. Skin. Black skin. In the land of the free, it is an American caricature of denial and a burlesque of deception: denial in the form of opportunities, denial in the fields of white spaces, and deception in the windows of humanity– all the while simultaneously existing as an illusioned distortion in the arena of white experiences. Contorted by the social constructs of criminality, purity, and superiority, Black Americans are warped in vigorous clouds of misconception that lies in the establishment of social standardizations. Moreover, the Black experience itself is woven from the interplay of hierarchal notions and the impact of marginalization. Reeked of a systemic barrier that vanquishes the deliverance of authenticity, America’s system of acceptance is deformed by biases arising from racist ideologies. As a multifaceted phenomenon, experiences entrenched in blackness are articulated and perceived through censored and fallacious mediums that affect the cognition of its rawness and authenticity, especially in the field of health care. The revolution that Gil Scott-Heron vocalized remains a silent symphony within the Black community, a symphony of struggles, resilience, and the relentless pursuit of truth. This turbulent landscape, shaped by systemic biases and entrenched prejudices, serves as the canvas upon which my own story unfolds. Me. I am. I have. I live with Scleroderma.

May 8, 2020: the day I was thrown into a whirlwind of confusion, disbelief, and relentless suffering; A day that wold mark a two-year odyssey navigating Scleroderma amidst the unforgiving landscape of a pandemic-stricken world. It began as an inconspicuous foe, an insidious intruder that invaded my body on an ordinary day. The world was unexpectedly battling the brutal reality of isolation. The era of Covid-19, with its cloak of uncertainty and fear, painted the backdrop of my diagnosis journey. It was a time when every cough and every ache sparked paranoia, blending seamlessly with the chaos brewing in my body, That day, I was punctured by an excruciating pain, one that etched its presence so deeply that life before it became a distant memory; a pain that defied description, gnawing at my core as a constant companion in a life I never envisioned. The torment wasn’t solely physical; it cast a shadow on my entire being, altering the very essence of my reality and transcending the boundaries of mere sensations. It was an unfamiliar feeling, distinct and unbearable in nature, as if my body was trying to communicate in a language foreign to me. Each passing moment became uncharted territory, a battlefield where my body waged a silent war against an invisible assailant, one that viciously stabbed at my gastrointestinal region. I dealt with this agony silently, pushing through until the day arrived when I couldn’t even lift a roll of toilet paper without wincing in piercing pain. As the world grappled with an invisible enemy in the form of a pandemic, my battle was internal- a clash between an inexplicable agony and the resilience of my human spirit.

What followed was a harrowing journey through a landscape marked by medical discrimination. Every plea for understanding fell on deaf ears, dismissed as mere echoes in the chasm of healthcare disparities. No matter how vividly I painted my agony, it seemed I was valued solely though the lens of my complexion and my family’s limited health coverage – a harsh reminder of the stark inequalities embedded in our “perfect” system. The first specialist I encountered, Dr. Kathy Sparantis, wielded her authority like a blunt instrument, declaring her opinion as the final verdict. “It’s all in our head,” she proclaimed, severing the tenuous thread of hope that tethered me to a semblance of normalcy. By this point, I had awaken every morning dangerously nauseous and has lost over 30 pounds. How could something that severe be in my head? Those words echoed in my mind for months, reverberating through the caverns of my existence, pushing me into a dark abyss of despair.

Days turned into weeks, weeks into months, as I grappled with a dark, shadowy figure called depression- an uninvited guest that had made itself at home within the confines of my mental sanity. Medications became my constant companions, a double-edged sword that not only failed to alleviate my pain, but added to the labyrinth of suffering. Antidepressants and pain relivers had made themselves my best friend and suicide had morphed itself into an illusioned poetic plan. In that tunnel of despair, my fragility concerning the future morphed into lingering shadow- a looming specter that haunted every thought and action. It took three doctors, a maze of consultations, and endless tests before a glimmer of light pierced through the suffocating darkness. A single blood test, also known as antinuclear antibody, became the beacon of truth, validating what I had known all along- I was not insane. Shortly after, I would learn of it’s existence. Scleroderma, a name that carried great weight, was the diagnosis that validated my years of mental confusion. The validation, however, came at a cost- a heavier toll on my mental well-being. It was a reminder of the skepticism and dismissal I had endured. The moment of diagnosis was bittersweet- a cocktail of relief and frustration. Relief that there was finally an answer, a tangible enemy I could now name. Frustration that it took a prolonged battle, a relentless pursuit of validation, to be acknowledged and heard. I was not crazy, but till this very day, I frequently question my sanity.

Scleroderma has etched its mark on the canvas of my life in ways I never anticipated. It’s not merely a diagnosis but a catalyst for transformation- a force that reshaped my perception of life, my existence, and kindled an unyielding fire within me. My journey with this condition birthed a profound metamorphosis, one that resonates far beyond the confines of my health. Gil Scott-Heron’s words, “The revolution will not be televised,” echoed with an intensified resonance in my narrative since the very beginning of my journey. This revolution, this transformation, isn’t confined to screens or headlines- its an intimate uprising within me. It’s a revolution that embodies perseverance forged through the crucible of relentless pain, dismissals, and societal biases. Like Scott-Heron’s poetic verses, my journey through the labyrinth of Scleroderma reflects the symphonic rhythms of adversity in the relentless pursuit of authenticity. Moreover, this journey hasn’t just altered my health; it’s fostered an unbreakable bond with advocacy. As a Black individual navigating the complexities of both Scleroderma and the American healthcare system, I’ve encountered firsthand the biases and disparities that permeate our society. This awareness has cultivated a deeper sense of responsibility- a calling to be an advocate not just for those battling the wickedness of Scleroderma but for the Black community who are beaten by the horrors engrained in our health system.

My college experience at the University of Illinois Urbana-Champaign, has become a crucible of learning to live with both truths. In the hallowed halls of academia, I’ve gained knowledge not solely from textbooks but also from the lesson-filled experiences related to my story. My education extends far beyond the limitations of lecture halls and stretches to include a curriculum rooted in empathy, resilience, and social consciousness. I’ve have propelled myself into advocacy, weaving the threads of my own journey with my autoimmune disease into a tapestry of change. As a board member of the Graduate Housing Resident Leadership Board and the youth committee president of the Alton chapter of the NAACP, I am continuously positioning myself as a spokesperson for minority individuals who are unfolding similar stories. I’m not just a student; i’m a torchbearer of courage, challenging the status quo, dismantling misconceptions, and amplifying the voices of those who are marginalized. My journey has become a bridge, connecting the realms of healthcare disparities and racial inequalities.

This chronic disorder has taught me empathy in the rawest and purest forms. It’s a constant reminder that struggles are multifaceted, transcending the boundaries of illness and ethnicity. It has instilled within me a profound sense of empathy and understanding- a lens through which I view the world with greater depth and compassion. As I traverse this path, I realize that bearing my truth isn’t merely a choice; it’s a solemn duty- a tribute to those who face similar battles yet remain unheard. It’s a tribute to the relentless resilience of the Black community- the very community that has shaped my identity and nourished my spirit.

In the framework of my experiences, I’ve emerged not just as a survivor but as a catalyst for change. Scleroderma, with its insidious grip, hasn’t diminished my spirit; it has amplified my voice. It’s transformed me into an advocate. A warrior in the battle for equitable healthcare, and a champion for the rights and voices of the underrepresented. The revolution within me, sparked by Scleroderma, continues to unfold into a symphonic harmony of unwavering determination, awareness, and advocation. And just as Gil Scott-Heron proclaimed, this revolution will not be televised- it will be lived, felt, and echoed through the corridors of change that I aim to carve, leaving an indelible mark on the tapestry of our collective journey towards fair healthcare and autoimmune disorder awareness. Me. I am. I have, I live with Scleroderma. My name is Jamaira Williams.