Grief

Do you ever have moments when you stand in front of the mirror longer than you should and don’t recognize the person staring back at you? Sometimes I look at myself, and my tired eyes, stress wrinkles, and bloated face make my appearance unfamiliar. It’s a body that resembles…

One of my greatest fears has come to fruition. Last week, my daughter was diagnosed with vitiligo, a disorder that causes the body’s immune system to attack skin cells that produce melanin, causing the skin to lose its color. Upon hearing the diagnosis, I felt the air leave my lungs,…

I sometimes feel like I’m laughing in the face of death. When I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), all my internet searches informed me that I’d have about five years to live. Now, more than 14 years later, I’m still going strong with no signs of…

Meeting another patient with neuromyelitis optica (NMO) is a rare occurrence — as rare as this disease. While most of us have incredible support networks, there’s something unparalleled about meeting another person who knows exactly what you’re going through. We don’t have to search for the right words to…

I am scared of dying. This is a truth I have avoided saying out loud or acknowledging for the last 13 years. When I was diagnosed with neuromyelitis optica (NMO), I Googled the disorder, and the internet only gave me five years to live. My loved ones found…

It rained the day before and after, but on the day we buried Dad, the overcast weather parted for a picturesque blue sky, complete with rolling white clouds. For mid-April, it could’ve been a cold, miserable day, matching our mood. Instead, the sun warmed us, so we didn’t need…

Fourteen years ago, when I was in the process of being diagnosed, I suffered a major neuromyelitis optica (NMO) attack on my spinal cord. The resulting transverse myelitis robbed me of the feeling in my arms and hands. As an artist, this was utterly devastating. My manual dexterity…