Being resilient: My journey of hope and triumph

My medical journey began with challenges but has evolved into a story of resilience and hope.

Born on a sweltering August day in New York, I arrived as a gift to my mother, resembling her in several ways, including as a fellow Leo. The first six months of my life were uneventful, as I was in good health and met the typical milestones of an infant. However, at the six-month mark, significant changes happened. My crying was weak, I had difficulty feeding, and I struggled to breathe. All of this signaled that something was amiss. It was reminiscent of what my late sister Sasha experienced with spinal muscular atrophy (SMA), which tragically claimed her life before I got to know her.

Confirming my mother’s fears, tests revealed that I also had SMA type 1. Despite the bleak prognosis from medical professionals, my parents refused to accept defeat. Instead, they embarked on a mission to ensure my survival and quality of life. Swift decisions were made, including the placement of a tracheostomy and a gastrostomy tube, as part of a comprehensive care plan to maximize my quality of life and well-being. SMA is a relentless adversary that erodes the abilities of those it affects. Its progressive nature strips people of invaluable skills and leaves chronic pain and fatigue as unwelcome companions.

In a society designed without the needs of people with disabilities in mind, these challenges often dictate our perceived productivity and usefulness. Moreover, the specter of severe illnesses looms large, presenting life-threatening risks that can lead to lengthy hospitalizations. These harrowing experiences blur the line between reality and fiction, as tales of near death and miraculous recovery become part of our lived reality. Along my journey, I have witnessed many of these trials firsthand.

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The things that make me who I am

My disability is an integral part of my identity that I essentially embrace. However, it doesn’t define the entirety of who I am. Despite SMA stripping away many physical abilities, it can never diminish my resilience, intellect, or potential to influence others.

When reflecting on my identity, three prominent aspects come to mind: student, employee, and passionate volunteer.

I’m proud to have achieved milestones that were once only distant dreams for my family. As the first in my family to earn a high school diploma, overcoming the challenges of home-schooling from second grade to graduation was a significant feat. This accomplishment laid the foundation for further success, culminating in my recent graduation with honors from Harrisburg Area Community College in Pennsylvania, where I earned an associate degree in social services.

This marked me as a first-generation college student and ignited my desire to pursue higher education and continue ascending the academic ladder. I’m currently enrolled at Millersville University, just 10 minutes from my home, where I’m pursuing a bachelor’s degree in social work.

Alongside my academic pursuits, which often feel like a full-time job without pay, I also work part time as a casual peer tutor. In this role, I specialize in human services tutoring, a unique niche that distinguishes me as the only tutor at my school in this subject area.

As if that weren’t enough to keep me busy, I also devote time to volunteering at various organizations, including the American Red Cross and a local hospice center. These volunteer commitments provide me with a profound sense of purpose and fulfillment amid the demands of school and work.

A multifaceted identity lies beyond my academic pursuits, job title, and volunteer work. I proudly embrace roles as an aunt to three cherished nieces, a daughter to two incredible parents, a sister to four siblings, and a friend to many, near and far.

My personality encompasses layers of sweetness, sarcasm, and humor intertwined with charm and a touch of mischief.

Coffee, especially espresso, is essential to fueling my day and maintaining my role as a contributing member of society. My heart sways to the melodies of romantic country music while my mind delves into crime-related narratives and psychological thrillers found in books.

Wrapped in the warmth of cozy blankets and accompanied by adorable, cuddly cats, I find solace and contentment. Together, these facets paint a vivid and complete picture of who I am.

Through my column, “Being Resilient,” my goal is to foster genuine connections with readers. By sharing my vulnerabilities and personal stories, I aim to inspire hope in others and instill a sense of resilience. I want to lead by example and serve as a beacon of empowerment for those affected by rare diseases by encouraging them to use their voices to advocate for themselves.

“Resilience is not about avoiding adversity, but about facing it head-on, adapting, and emerging stronger than before.” — Source unknown

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.