For most of my childhood, my health was described to me through measurements of hemoglobin levels, hospital visits, and the physical limits those values placed on my life. While these measurements were necessary, they could not explain what it meant to live within those limitations. Writing has given me a way to recover what my medical records always left out. It didn’t make me immune to the restrictions of my disease, but it kept those restrictions from becoming the only story I could tell about myself.
Through my Substack, writing has become a way to define myself on my own terms and understand how larger systems have shaped my experiences. I rarely know what a story means when I begin writing it. I follow the details until they reveal a larger question about my life. Along the way, I have to decide which moments matter and what remains unresolved. I find the same satisfaction in research. I begin with an observation, test possible explanations, and revise my interpretation until the evidence supports a clear conclusion.
Writing publicly has also changed how I present my ideas to an audience. An idea that feels convincing in my head often becomes less certain once I put it on the page. Revising an essay forces me to separate observation from interpretation and recognize when a reader may need more explanation. Sharing these stories has also allowed me to contribute to broader conversations about rare disease. It has also taught me to imagine how the systems supporting patients could be different. Every essay gives me some control over how an experience is framed, but that control carries responsibility. When I write, I know that the shape I give to my own story can quietly stand in for the experience of a patient who will never write theirs.
My life began in a hospital, and hospitals have stayed woven through my memories ever since. It is a place I know well, and one I now want to redefine, not by leaving it behind but by helping shape the principles that determine patient outcomes while keeping the people affected by those decisions visible throughout the process. It is also why I write on Substack. Each essay is a small practice of that same intention, to give shape to an experience without letting it dissolve into abstraction, and to remain a voice for those still sitting in the hospital bed I once occupied.