Living with MOGAD as an adult has been a journey I never expected. In 2009, when I had my first episode of optic neuritis, I lost my vision for the first time. It was terrifying, but eventually, some of my sight returned—never fully, but enough to let me keep teaching, to keep living the life I loved.
For almost twenty years, I was a teacher, always on the move, always helping others. My classroom was my world, and I thrived on the energy and connection with my students. But in 2023, everything changed. My second episode of optic neuritis struck my right eye, and this time, the vision loss was permanent, and now I am diagnosed with eye atrophy this was a heavy blow. Suddenly, the world looked different—colors faded, details blurred, and I found myself depending on others for even the simplest things, like picking out my clothes. The loss of feeling in my hands made it hard to hold onto anything; I dropped and broke things constantly.
The independence I once took for granted slipped away, piece by piece.
The past three years have been a blur of surgeries—spine, cervical, nerve, carpal tunnel—and countless injections to try to manage the chronic pain that now stretches from my head to my toes. Each procedure brought hope, but none brought relief. The pain remained, a constant companion, and the realization that none of the surgeries worked was crushing. There have been nights when the weight of it all felt unbearable. I remember sitting in the quiet darkness, overwhelmed by the loss of my career, my independence, and the life I once knew. I was always the one helping others, and now I needed help with everything. It was a hard pill to swallow.
Yet, even in the darkest moments, I have found strength.
Sometimes it comes from the people around me—family, friends, and the medical team at the Fixel Neurological Institute, pain management, cardiologist, psychiatrists, counselor and more at UF where I am part of a clinical trial. Sometimes it comes from within, a quiet determination to keep going, to find purpose in new ways. I am learning to accept help, to let go of what I can’t control, and to celebrate the small victories—like making it through another day, or finding a moment of peace amid the pain.
This journey has changed me, but it hasn’t broken me. I am still here, still fighting, still hoping for better days.
My granddaughter Glory is the light that brightens even my darkest days. I never expected to find such a powerful motivation in her, but every moment with her fills my heart with hope and purpose. Her laughter is like music, a melody that lifts the heaviness from my shoulders and makes me want to try harder, to be better, to see the world through a more positive lens. When I hold Glory in my arms, the pain in my body seems to fade away. My arms, which often ache, feel strong and steady with her gentle weight. When we lie together, my back pain is replaced by the warmth of her presence. Even though my vision is blurry and I can barely make out her face, I cherish every second I get to spend with her. I listen for her giggle, feel her tiny hands, and soak in the happiness she brings just by being near. There are days when I only get to see her for a little while, but those moments are precious. I savor them, knowing that her happiness is my happiness. Glory has given me a reason to stand up every day, to keep moving forward, and to find joy in the smallest things. My life is so much better with her in it, and I am endlessly grateful for the gift of her love.
