What Am I Really Scared Of?

A few nights ago, I wrote about the dreaded waiting game—the anxiety and depression that set in while awaiting test results. After I finished, my husband read my post and wanted to talk. He sensed that my frustration and anxiety stemmed from a fear of the unknown, or perhaps a fear of dying. While there is some truth to that, it is not the whole story. So, he asked me, "Is it death you fear? And if not death, then what?"

The truth is, I do not fear death itself. I do not want to die, of course—if I could, I would live forever. But death is not something I am afraid of. As my 7th-grade teacher, Mrs. Connor, once said, "Everyone must do two things in life: die and pay taxes." Even at a young age, I understood that death is inevitable. Life is a journey toward an end. In many cultures, death is even celebrated—think of Mexico’s Día de los Muertos, New Orleans’ Jazz Funeral, China’s Qingming, or Japan’s Obon Festival. So, if death is not the fear, then what is?

This was the heart of our conversation the other night. I explained to my husband that it is not death itself that I fear; it is the time limit that terrifies me. We all have an expiration date, but the circumstances surrounding mine make it overwhelming. I am forced to live by a strict schedule just to avoid dying or to potentially extend my life. The constant reminders are relentless: MRI scans, blood tests, the Optune device I wear every day. Maneuvering around the bathroom with this heavy device on my shoulder and dealing with special travel documents all serve as persistent reminders of what is happening inside me.

It is difficult to put into words how anxious and depressed this makes me feel. The emotional toll of living with these constant reminders is hard to articulate, and at times, the weight of it all feels unbearable.

My approach, though perhaps a temporary fix, is to focus on living each day without dwelling on what is wrong. I share my story to help others, and every day, I strive to stay strong.

So, if death is not the fear, then what is? It is the constant, unrelenting reminders of my illness and the imposed time limit on my life. The burden of living by a strict schedule just to survive—or to maybe extend my time—creates anxiety and depression that is hard to shake. But I keep pushing forward, sharing my journey in the hope that it might help someone else, and striving every day to stay strong.