The Five Stages of Grief: A Journey with Usher Syndrome

The first stage of grief involves a refusal to accept the reality of the situation, serving as a defense mechanism to buffer the immediate shock of the loss.

I was diagnosed with Usher syndrome type 2A when I was about eight years old. Looking back, my mom introduced the reality of my diagnosis with incredible wisdom. She had me read The Story of My Life by Helen Keller. At the time, I didn’t know who Helen Keller was. After reading her story, I was in awe. Here was a girl who was deaf and blind, yet she learned, grew, and changed the world. That book planted a seed. One that would quietly grow with me over the years.

I already knew I was hard of hearing. I had worn bilateral hearing aids since the age of three, and that alone set me apart from my peers. Then my mom gently explained that one day, I would lose my vision too. I was just a kid. I couldn’t fully grasp what that meant. Maybe I understood more than I realized, or maybe I chose denial. As a child, I was certain blindness wouldn’t really happen to me. I was okay for now, so why worry? Either way, that was the moment I first stepped onto the hamster wheel of loss—and I’ve been learning how to run it ever since.

In this stage, one might try to negotiate a way out of the pain, often making “if only” or “what if” statements to regain a sense of control.

Over the years, I moved through the stages again and again. Usher syndrome is progressive. With each new change in my vision, the cycle begins again. The wheel doesn’t stop, but neither do I. Through it all, my mom did everything she could to prepare me. She enrolled me in summer programs at the School for the Blind and made sure I learned Braille during the school year. At the time, I went along with it without much thought. Looking back, those moments were powerful acts of love and early lessons in navigating the “what ifs” of my future.

A selfie photo of Sarah Bailey, She is outside and wears a gray knit beanie and has medium length brown hair.

Today, at 40, I’m still on the hamster wheel, but it no longer scares me. I know this terrain. I know the turns. And I know that each time my vision shifts, my world shifts too. I adapt. I grow. I keep going. I don’t love having Usher syndrome, but I believe God has given me purpose through it.

I was a teacher. I taught my students about Helen Keller, Braille, and sign language. And I am still a teacher today, just in a different way. I was an artist. My first national recognition came from using my art to express the stages of loss experienced with Usher syndrome. I am still an artist. My techniques will evolve as my vision changes, but now I create as The Deaf/Blind Artist. And that identity is not a limitation, it’s a legacy in progress.

I was once a victim of circumstances I couldn’t control. Now, I am an example of what happens when resilience meets purpose. Nothing will hold me back, because I refuse to limit myself. It’s a mindset. I’m an advocate. I’m a creator. I’m a teacher. And most importantly, I’m not alone.