Wednesday, March 20, 2024

Multiple Sclerosis & Me

This is a personal narrative of my life, highlighting the constant struggle I face with a disease that I often try to forget exists: Multiple Sclerosis. Its insidious presence first manifested itself in my 20s, becoming an unwelcome companion in my journey.

I vividly recall my initial encounter with the medical world. The doctor's dismissive words echoed in my ears like the sound of an ice pick tapping against a wall, uncertain whether it would pierce an electrical cord or not. "Nothing to be concerned about," he casually remarked. Little did I know that the shockwaves of this ailment would soon reverberate through my entire being.

It was the year 2017 when I found myself leading an active lifestyle, regularly hitting the gym, visiting the YMCA, and immersing myself in invigorating hikes. However, fate had a different plan in store for me. One fateful day, as I toiled away at work, an overwhelming sensation began to wash over me. It was an indescribable feeling, one that compelled me to hastily pack up my belongings. My laptop found its place within the confines of my bag, and I stood up, intending to exit the restaurant where I had sought refuge for my studies.

But then, my world turned upside down.

I stumbled and collapsed to the ground, my right side rendered motionless and unresponsive. Paralyzed and bewildered, I desperately sought assistance, relying on the kindness of others to transport me to the emergency room. The doctor peered into the depths of my condition, acknowledging that something was amiss within my brain. I attempted to draw a parallel between my torment and the ice pick analogy, but the physician's discerning gaze shattered my feeble comparison. With a simple command to move my right arm, the truth became apparent—it was as if the electrical current had been severed on my right side.

The medical professionals debated between a stroke and Multiple Sclerosis, ultimately settling on the latter as the final diagnosis. An influx of steroids flooded my system, serving as a temporary respite, while physical therapy became my gateway to relearning the art of walking.

Many years have passed since that pivotal moment in my life, but the impact of that experience remains etched in my memory.

The initial medication prescribed to me was Tecfidera, but unfortunately, it proved ineffective in my case. Not only was it not potent enough to combat the relentless nature of my condition, but it also subjected me to severe gastric upset, exacerbating the already challenging situation.

Subsequently, a stronger medication was prescribed, which initially showed promise. However, a year ago, it faltered, leading to a distressing relapse. This setback forced me into a situation where a brain biopsy became necessary. It was during this procedure that medical professionals determined I had a "different flavor of MS," a term that would later become synonymous with a severe form of the disease. Though the exact implications of this designation eluded me at the time.

As part of my treatment regimen, I undergo Ocrevus infusions every six months. However, my most recent infusion, which took place on October 11th, 2024, revealed disheartening news. The MRI displayed a new dent in my brain, a visible testament to the relentless progression of the disease. The consequences were tangible and overwhelming, manifesting as unrelenting fatigue, as if sleep had become an elusive luxury.

The looming Thursday appointment with my neurologist now carries immense weight. The path ahead, after the brain biopsy, was made alarmingly clear: "Should further progression occur, aggressive measures such as full chemotherapy and a subsequent bone marrow transplant will be necessary." 

The gravity of those words cannot be understated.


They meticulously extracted eight fragments of my brain in their quest to determine the specific strain of MS I had been grappling with—a variant that was supposedly different, yet hopefully manageable. However, the illusion of stability shattered, leaving me in a state of profound unease. Terrified would be an understatement to describe the turmoil within me.

In the depths of my being, fear takes hold, intertwining with a palpable sense of frustration. This unwelcome intrusion couldn't have chosen a more inconvenient time to rear its head. Yet despite the overwhelming circumstances, I refuse to yield. Why surrender now? Why allow my own body, which should be a source of strength, to betray me in this critical moment?

I could easily point fingers and lay blame on countless factors, sarcastically challenging the universe to throw more barriers in my path. "Go ahead," I dare taunt, facing the flames head-on, fully prepared to bear the scorching heat and emerge triumphantly singed—a testament to my indomitable spirit. I have become seasoned in this struggle, and if you dare to consume me, savor the taste of my resilience.

Yet, fate has a cruel sense of timing. This tumultuous chapter unfolds amidst an arduous academic journey, laden with a demanding course load, looming deadlines for major papers, and a crucial presentation on disabilities and accommodations. Throughout it all, I find myself grappling with the relentless symptoms of MS, as if caught in an ever-spinning vortex, teetering on the precipice of unconsciousness.

In moments like these, I can't help but question the cosmic forces at play. What did I do to deserve this tumultuous path?

Thursday looms ahead, the day when I am scheduled to visit my esteemed neurologist. A team of doctors I hold in high regard, who possess the knowledge and expertise to navigate the intricacies of my condition. I eagerly await their insights, and I promise to keep you informed of their verdict this week. In the interim, I humbly request your prayers, for the weight of this situation bears heavily upon me.

My aspirations are clear—I yearn to don the cap and gown, to walk the stage and graduate triumphantly. Success is my fervent desire, and I refuse to let my body falter at this crucial juncture. The stakes are high, and my determination knows no bounds.

Please accept my heartfelt appreciation for your support and encouragement.


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