Facing the Unexpected: My Journey Into Legal Blindness and Rediscovering Independence

I never expected that my life would take such a sharp turn in adulthood, at the height of my purpose, leadership, and clarity. My calendar was filled with keynote speeches, consulting projects, nationwide systems-change work, and parenting responsibilities. Then, without warning, my eyesight shifted—subtly at first, then drastically. And suddenly, I was living in a world that no longer looked like mine.

My journey into legal blindness began with Acute Zonal Occult Outer Retinopathy (AZOOR), a rare autoimmune retinal condition that disrupts the function of photoreceptors. People with AZOOR often experience sudden blind spots, reduced peripheral vision, and distorted central vision (Gass et al., 2002). For me, it started as a faint gray arc in my field of vision — something I blamed on fatigue. Within months, that arc had expanded. Faces blurred. Words dissolved. Screens glowed, but meaning disappeared.

When I lost my ability to drive, it felt like someone had taken a piece of my identity. Driving represented independence, autonomy, spontaneity , and losing it required me to rethink my entire life. According to the Centers for Disease Control and Prevention (CDC, 2024), more than 7 million adults in the United States live with significant vision impairment, and for many, driving cessation is one of the hardest adjustments to navigate.

Losing vision wasn’t just a physical change. It was a psychological earthquake. I had to relearn how to trust assistive technology: magnifiers, screen readers, high-contrast settings, and my cane. Research shows that adjustment to vision loss often involves emotional cycles that resemble grief , denial, anger, bargaining, depression, acceptance (Bernbaum et al., 2020). I walked through every one of those stages.

But what no study can capture is what it feels like to lose independence while still being responsible for everything — children, career, bills, expectations, clients. Vision loss doesn’t pause life; it requires you to carry life differently.

And yet, with every adaptation, something unexpected happened: I grew stronger.

I began using screen-reader technology for work. I asked for accessible slides at conferences. I trained with my white cane, learning to navigate spaces with more confidence. I started leaning on community rather than loneliness. I found new ways to lead, new ways to consult, and new ways to share my story with authenticity rather than fear.

Independence didn’t disappear — it transformed.

My life with AZOOR is not the life I imagined, but it is still full, beautiful, purposeful, and powerful. And if you are navigating new blindness or low vision, let me say this clearly: You are not starting over. You are evolving.

Call to Action

If you’re adjusting to new vision loss or supporting someone who is you can find more resources at www.ekovisionfoundation.org

Kenisha Coon , Director of Community Engagement.

References

Bernbaum, M., Albert, S., & Grisso, J. (2020). Depression and coping in adults with vision loss. Journal of Visual Impairment & Blindness, 114(3), 183–196.

 Centers for Disease Control and Prevention. (2024). Vision loss fast facts.

 Gass, J. D., Agarwal, A., Scott, I. U., et al. (2002). Acute zonal occult outer retinopathy: A long-term follow-up study. American Journal of Ophthalmology, 134(5), 699–707.