Living with spinal muscular atrophy means that I rely on a team of caregivers to support me with the daily routines of life. These individuals help me with tasks most people take for granted, but they are so much more than helpers. They are partners, friends, and in many ways, family. The truth is that the story of my life is inseparable from the people who make it possible. They are the unseen heroes behind every success, every milestone, and every ordinary day that I am able to live fully.
Building a Team
I began assembling and managing care teams back in high school. At first, it felt overwhelming. I had to balance classes, extracurricular activities, and a social life, all while making sure I had coverage for the basic routines that keep me independent and safe. These early experiences forced me to develop systems and routines, and shaped the leadership skills I carry with me today.
I had to learn how to interview, train, retain, and motivate caregivers long before I ever studied human resources. I became responsible for building backup plans, because gaps in coverage weren’t just inconvenient—they could be dangerous. Every decision mattered, and every person on my team played a critical role.
Caregivers as Partners
Over time, I realized that caregivers are not just part of my independence—they are part of my identity. They have seen me at my most vulnerable and have supported me in ways I could never fully repay. They show up every day with compassion, energy, and dedication, and in return, I strive to create an environment where they feel appreciated and supported.
I understand the importance of making my caregiver team feel valued and recognized. Unlike some who are under the incredibly low and unsustainable income limits, I do not receive government support and pay my caregivers out of pocket. This makes retaining a skilled team incredibly expensive and takes up a significant portion of my take-home pay. To address this challenge, I focus on creative non-financial incentives that foster a sense of appreciation and recognition beyond just monetary compensation. Offering flexible schedules and unique perks is essential, but what truly matters is treating my caregivers like family. The relationships I cultivate with my team are built on mutual respect, trust, and understanding, which are invaluable in ensuring their long-term commitment.
Lessons in Leadership and Empathy
Managing a team of caregivers has taught me lessons that go far beyond personal care. It has taught me leadership, problem-solving, and empathy in ways that a classroom never could. Balancing a team while pursuing my education in college was particularly challenging. I was essentially running a small organization focused entirely on my care, while also attending classes, studying, and participating in campus life, and working. There were days when schedules clashed, equipment failed, or emergencies arose. Each of those moments was a test of resilience, creativity, and patience.
Through it all, I learned that leadership is not just about giving directions or making decisions. It is about listening, understanding, and being attuned to the needs of others. It is about creating a space where people feel empowered, supported, and respected. My caregivers have shown me the power of empathy every day, and I strive to return that same care in the way I manage and support them.
Gratitude for Their Dedication
I am profoundly grateful for every person who has ever taken a chance on working for me. Their compassion and dedication are the quiet force behind every milestone I have reached. They have given me freedom, dignity, and the ability to chase my dreams. Without them, I would not have been able to travel, pursue higher education, or build the career I have today.
Caregivers often see only the tasks in front of them—the routine moments of daily life—but what they provide is so much bigger. They provide independence, confidence, and the ability to fully engage in the world around me. They help me participate in experiences, celebrate achievements, and navigate challenges. They are the foundation that allows me to live life on my terms.
Resilience and Community
Working alongside caregivers has also reinforced the importance of community. I have learned that asking for help is not a weakness—it is a strength. Building trust and fostering collaboration creates resilience, not just for me but for the entire team. Each person contributes their own energy, creativity, and problem-solving skills to ensure that life runs smoothly, and together we accomplish far more than I could on my own.
These lessons extend far beyond my personal experience. They influence how I approach my professional life, my friendships, and the way I engage with the broader community. They have taught me that trust, empathy, and care are not optional—they are essential to achieving shared goals and supporting one another.
The Unseen Heroes
The people who support me are the unseen heroes of my story. They are often behind the scenes, their contributions unnoticed by the wider world, yet their impact is profound. They enable me to live fully, pursue my ambitions, and experience life with dignity and joy. Every achievement, every milestone, and every moment of independence is built on their dedication.
I often think of them as extensions of my own spirit. They bring light, energy, and humanity to my daily life. And while I may never be able to repay them fully, I can honor their commitment by acknowledging and celebrating the fact that without them, I wouldn’t be where I am today. I am humbled and filled with gratitude by their dedication to excellence and their teamwork. They are partners in my story, shaping the person I am and helping me become the person I strive to be.
Conclusion
Living with spinal muscular atrophy has shown me the value of interdependence. Life is not meant to be lived alone, and the unseen heroes in my story have taught me the power of collaboration, empathy, and trust. Caregivers are not just support—they are family, friends, and partners in every sense of the word. Their dedication enables me to chase my dreams, embrace challenges, and live life to the fullest.
Every day, I am reminded that success is rarely achieved alone. It is the collective effort of those who believe in you, support you, and show up when it matters most. My caregivers are those people. They are the quiet, unwavering presence that allows me to write my story, and for that, I am endlessly grateful.