Scleroderma is a disease most people have never heard about in their lifetime. For me, I was writing my 8th grade English research assignment on this rare disease my dad was just diagnosed with. Little did I know that within roughly a year, this disease would progress so severely that it ended up taking his life. Scleroderma became a force that reshaped my life, the trajectory of my future, and transformed the way I perceived love, loss, and purpose. Even though I was 14 years old when he was diagnosed and 15 when he passed, his diagnosis marked the beginning of a journey that would change every part of who I am. Scleroderma and my father’s death gave me a new outlook on life, a calling to serve others in my future career, and the understanding that I can continue carrying him with me every day in every single thing I do.

New outlook on life

Before my dad got sick, I measured my time in soccer practices, club games, and weekend tournaments. My biggest worries were making sure I was able to see my friends and if my coaches would start me next game. Once Scleroderma entered my life, everything shifted. My time became a balancing act between soccer, school, and caregiving. Nights once filled with practice were now filled with YouTube videos on how to flush a feeding tube or what Cyclophosphamide was. As his disease progressed, I watched my dad lose abilities one by one. Walking turned into a cane turned into a wheelchair. Eating turned into a liquid diet turned into a feeding tube. Yet he still found a way to show up for me, cheering from his wheelchair, quizzing me on vocabulary cards during tournament weekends, and reminding me that my dreams are wort chasing, even when it felt impossible. His resilience taught me that strength is not about how struggles affect you but what you do despite those struggles.

Unfortunately, after he passed away abruptly, everything I thought he taught me and everything I thought I understood about resilience collapsed. Scleroderma had taken away the one person who made my world feel steady. My dad had been my biggest supporter, my best friend, and the one person who believed in me long before I believed in myself. Losing him shattered me in ways in which I had no tools to fix or even understand the immense grief I was under. I spiraled into a deep depression that eventually led to a severe mental health crisis. It felt like my entire world had just fallen apart and I no longer felt like I belonged.

For a long time, I believed I had to endure this pain alone. I thought being strong for my mom and brother meant hiding my grief, smiling to keep my struggles silent. I still put my cleats on, kept my grades up, and held myself together just enough to convince everyone I was okay. But behind that mask was a drowning 15-year-old girl too scared to ask for help.

After another serious mental health crisis and witnessing my mom working to keep our house and food on the table, I finally learned an important lesson I still implement today: You cannot fight your hardest battles alone.

I reached out to my mom and we shared how we both felt like we couldn’t show each other our weaknesses because we both felt the need to be strong for the other. In that moment, our relationship strengthened as we chose to fight against grief together. I learned that vulnerability is not weak or embarrassing. It is connection. It is reaching out and allowing someone to carry some of the weight I was crumbling under. I also learned that life is not something you earn by being strong, perfect, or successful. My mental health crisis taught me that life is worth protecting because everyone deserves a chance to exist.

Scleroderma may have taken my father but it also taught me that healing is not meant to be exclusive. It changed my outlook on life that the toughest battles we face should not be fought alone.

Calling to serve others

My journey to becoming a physical therapist began long before I was being recruited by colleges for soccer and long before I thought about what I genuinely wanted to do in life. It started in my father’s hospital room where his healthcare team was truly phenomenal and powerful. They each played a role in improving his physical health, mental health, and his dignity as he had to deal with this newly disabling disease. I still remember his physical therapist and his occupational therapist as they uniquely stood out to me. They didn’t just treat his symptoms with education on how to use a wheelchair or how to strengthen the muscles he still had. They were preserving and acknowledging parts of his life that still mattered to him.

They were able to help him develop the strength to stand up at my games and clap when I scored at my soccer games. They gave him tools that allowed him to put his socks on without assistance. They even gave in to his one-of-a-kind dad jokes and laughed with him. I saw them almost every day when my dad was in and out of the hospital. Even after he passed away, they still showed up by coming to his funeral and sharing this huge loss in our lives. They single-handedly showed me that healthcare is not just clinically bright lights and white coats, but it is a deep personal service and commitment. I didn’t realize at the time how much these two individuals had influenced my future career goals. As I healed and grew older, I recognized that I base my life on serving others with compassion, connection, leadership, and hope. Physical therapy is not just strengthening weak muscles or stretching tight muscles but about walking alongside someone as they journey through a vulnerable moment in their life.

Scleroderma taught me that I truly strive to be the clinician who treats the whole person, not just the diagnosis. The therapist who sees beyond the physical limitations and recognizes the emotional and mental toll injuries or diseases can have on the patient and their family. From my own healing journey, I know nothing is linear and progress can be unrecognizable. Today, I am currently pursuing my Doctor of Physical Therapy at Duquesne University. My purpose as a future healthcare worker is deeply rooted in those early experiences. I strive to serve others the way my father’s therapists served him, leading with patience, empathy, and intelligence in my practice.

Carrying my father’s presence to today

For a long time, I believed that my father’s death was the end. It was the end of his life. It was the end of my relationship with him. It was the end of any and all memories I had with him. I believed there was clear line through my life separating when I had a dad and when I didn’t. When he passed away on September 17th, it felt like a part of me died with him. The rest of me felt empty, directionless, and unbearably heavy.

But as I grew older and as I healed, I realized that my dad didn’t entirely die on that September morning. He instilled values in me that I can carry with me every day.

He lives in the way I lead and show up for others.

He lives in my drive and compassion to be the best version of myself I can be.

He lives in my leadership as a soccer player because I do not wear that captain’s armband for the title. I wear it because I crave the responsibilities of motivating the team and being a selfless leader who understands every teammate.

He lives in the way I love. He showed me unrelenting and deep love to my family despite
not loving his new life under the disabling Scleroderma diagnosis. Because of him, I love a little
deeper than most people.

He lives in the way I use his same exact humor to crack a smile on anyone I interact with.

Scleroderma may have physically taken my dad from me but it could not take the lessons and morals he taught me. I carry him with me in everything I do today.

When I study late into the night, I think about how he voiced the importance of school and education to me.

When I show up for my teammates, I think about the strength he saw in me at such an early age.

When I feel myself struggling, I think about how I am honored to be able to still be alive to this day, just by asking for help.

Scleroderma is a disease I wish had never touched my family. I wish my father had lived long enough to see me achieve my dream of becoming a Division I athlete, a 3-year team captain, and a future Doctor of Physical Therapy. I wish I could have seen him in the stands during my senior day or at my white-coat ceremony. I wish he were here to walk me down the aisle. Most of all, I wish he could see the woman I am today because of him.

Scleroderma may have changed my life in devasting ways but it also shaped me into the person I am today. It changed my outlook on life, inspired my career to serve others, and that I can honor him in the life I am building today. To quote myself from my 8th grade English research paper on Scleroderma, This disease is not measured in deficits and disabilities. It is measured in community, advocacy, and strength.