Essays

Regaining Sight Of Her Happiness After Blindness

Losing her vision from occult macular degeneration could easily have placed Ashley J. Smith in a downward spiral. Instead, she chose joy.
A blind woman with occult macular generation standing before Denali.

In seventh grade, Ashley J. Smith moved from the back row to the middle of the classroom in order to see the blackboard. Her vision was deteriorating and she didn’t understand why. She hid it from her classmates and teachers.

Fitting in, losing her sight, and trying to understand what was happening was a lot to handle. Eyeglasses didn’t correct her vision.

Her parents took her to a number of specialists. She went through all kinds of tests: ink injected into her veins, electrodes stuck to her head, and wires attached to contact lenses in her eyes. Some results came back normal. A few doctors misdiagnosed her and others dismissed her.

It took a number of years for her to be diagnosed with Occult Macular Dystrophy, a rare genetic eye disorder that causes vision loss.

Folks spoke with Smith about losing her vision, her diagnosis, and how she found happiness.

A woman with occult macular degeneration with brown hair, a blue top, and a black blazer.

Ashley J. Smith was only in seventh grade when she started losing her vision due to occult macular degeneration.

When did you start getting answers?

When I was in my mid-20s, a doctor referred me to Dr. Edwin Stone at the University of Iowa. I was evaluated by the people at the forefront of rare blinding conditions. While they still couldn’t give me any answers initially, they at least gave me hope and treated me with dignity.

Several doctors called me “an interesting case…” I am an interesting case, scientifically speaking. Buras an insecure teen and young adult, it was invalidating and insensitive [to say].

Prior to that diagnosis, several doctors called me “an interesting case.” Now, I shrug that off.  I am an interesting case, scientifically speaking. But (back then) as an insecure teen and young adult, it was invalidating and insensitive.

I found out I had Occult Macular Dystrophy a few days before I turned 38.

What did you learn about your type of vision loss?

Dr. Stone told me they found my gene, the mutation responsible for my particular vision loss, which is Occult Macular Dystrophy. I felt hope, but I definitely wanted to cry.

While I’m thrilled about the possibility of a cure in the future—identifying the defective gene is the first step—I’m not holding my breath. It would be amazing to have my sight restored, but I’ve also been working really hard to be okay without it.

As a child, how did you manage in school?

I attended public school in Arkansas in the 90s. I was socially anxious as a teen. It’s ironic that I ended up studying that in graduate school. (ed. Ashley Smith got her Ph.D. in Clinical Psychology.) I was mortified at the prospect of anyone knowing about my vision. I was convinced they’d judge me.

I was afraid that others would know how bad my vision was and shun me. I got to a point where I realized that something had to change.

I had trouble reading the board in class, but I was good at listening. Sometimes, I would pretend to have to sharpen my pencil so I could walk closer to the board. Then, I’d hurry and read as much as I could and rely on my memory when I got back to my seat.

What was your biggest challenge?

Driving. When I had to stop driving in 2015, I was in a pretty dark place emotionally. I felt like I had lost my independence, and I was afraid that others would know how bad my vision was and shun me. I got to a point where I realized that something had to change.

What changed?

The biggest change was talking openly about my vision loss. As a clinical psychologist who specializes in the treatment of anxiety disorders, a nice side effect of my job is really good coping skills. I used my CBT (Cognitive Behavioral Therapy) skills to help me deal with internal distress, and I started making changes in my life to promote well-being and happiness.

I started a private practice in April 2017 after working at a nationally recognized anxiety specialty center for seven-plus years and at a children’s hospital for two years before that.

I work with children and adults, most of whom have an anxiety or obsessive-compulsive spectrum disorder, though I do work with people who also have depression disorders, ADHD, health conditions, and other stressors. I incorporate positive psychology practices into treatment. I also present workshops locally and nationally, consult with other professionals, and do some writing.

A woman wearing sunglasses with occult macular generation standing before Denali.

Smith posing at Denali National Park.

What are the benefits?

The more I share, the more I get a chance to connect with others and to realize I don’t have to hide my vision. I spent decades doing that because I thought it was a fundamental flaw.

The more I share, the more I get a chance to connect with others and to realize I don’t have to hide my visio

The first time I told my story was at work. We had a support group. My heart was pounding. It was very therapeutic. A big part of my personal journey was to share my story publically. The response is positive.

How much can you see today?

I have a blind spot in the middle of my field of vision. What that means is that if I look directly at something, it tends to disappear depending on how big and how close it is. For example, if I extend my arm, my fingernails disappear.

I’m sensitive to brightness. Being outside in the sun essentially shuts down my eye and is painful without sunglasses.

My peripheral vision is intact. I rely on it to compensate.

What do you do for fun?

Being open lets me interact with others, which is all positive.

My 2017 New Year’s resolution was to try one new experience every week. I’ve stuck with it and it’s been a fun way to move through life. I’ve taken ballroom and swing dance classes. I read, cook, and travel. Recently, I tried floating in a sensory deprivation tank. I Google “new experiences,” and try things I’ve never tried before.

I just got back from Paris and plan on seeing the Mayan ruins. I write about it on my blog, A Blind Quest for Happiness.

Being open lets me interact with others, which is all positive.