So Close to Death Yet So Far Away: A story Based on Dysautonomia Disorders

Growing up in Reading, Pennsylvania, Derek was a strong student and dedicated athlete with a future full of promise. But at just seventeen years old, during a routine shift as a lifeguard, a simple nap became the moment that changed everything. After months of unexplained symptoms and countless doctor visits, Derek was diagnosed with a life-altering autonomic nervous system disorder: Postural Orthostatic Tachycardia Syndrome (POTS).Often referred to as an invisible illness, POTS is a rare, debilitating form of dysautonomia that affects heart rate, blood pressure, energy levels, and daily functioning. What followed was an eight-year medical roller coaster of remissions and relapses, emergency room visits, trial-and-error medications, and constant uncertainty. Behind the scenes, Derek fought in silence—hiding his illness from all but a few out of fear of judgment, stigma, and being misunderstood.In October 2016, everything came to a head. While working as an assistant branch manager at a rental car office, Derek collapsed during a sales call inside a body shop and woke up in the back of an ambulance. That moment became his breaking point—and his turning point. Determined to take back control of his life, Derek began pursuing new career paths and made a life-changing decision: to finally speak openly about living with dysautonomia and bring awareness to a condition that remains largely misunderstood.This book is both a raw personal memoir and a powerful illness awareness resource. Inside, you will find Derek’s firsthand account of living with POTS, along with emotional interviews with mothers of children battling dysautonomia, professional insights from medical providers, and real-life stories from others fighting this disorder every day. Together, these voices paint a vivid picture of what it truly means to live with a chronic, invisible illness.Although more than one million people worldwide have been diagnosed with dysautonomia, public understanding of POTS remains dangerously limited. What is known by those who have it, is at times, they feel like they are so close to dying, yet only to be told they were so far away. Read more