How Going Blind Taught Me To See Beyond Fear

Isaac Lidsky was diagnosed with a retinal degenerative disease at 13, and soon found himself oppressed by the hope of finding a cure.

How Going Blind Taught Me To See Beyond Fear
Photo: National Eye Institute, National Institutes of Health via Wikimedia Commons

Today, being blind doesn’t scare me. It hasn’t scared me for more than a decade. But leaving Dr. W’s office as a 13-year-old who’d just been diagnosed with a retinal degenerative disease, I was terrified. I felt a lot older, too.

Blindness is my death sentence, I thought. It will end my life as I know it—end independence and confidence, end strength, end achievement. Blind, I will cease to be special, funny, successful. I will be helpless, pathetic, weak.

Fear’s Creations

Anticipating the loss of my sight wasn’t the worst part. The worst part was that the diagnosis I received that day stole even the triumph before my fall. I saw everything I was blessed to have as that which I would lose. I mourned my losses preemptively, as well as the blessings I’d never attain. I’d never be a father, I thought. It’s for the better; no child deserves that. Besides, I’ll no doubt remain a child myself, dependent on my parents. Who will I turn to when they’re gone?

Through my teenage years, this was my reality of blindness. Psychologists have a great term for it: “awfulizing.” To awfulize is to imagine your predicament in your mind in its most awful form, and to experience those imaginings as your reality, as your manufactured truth.

I awfulized blindness, though I didn’t know the first thing about it. I had no experience with it. I hadn’t even thought much about it. On this blank canvas of ignorance, my fear painted in vivid, bold strokes—scenes of anxiety, insecurity, and doom. These images captivated my attention, drew me in, consumed my thoughts, overpowered me. They felt so real that they became real. I saw my destination, my future, my fate in those scenes, and I didn’t question them.

Outsourcing Your Destiny

Fear’s work doesn’t end with the baseless reality it concocts in your mind; that’s where it begins. To perpetuate its fictions, fear conspires with your villains and heroes. “Blame your villains,” fear whispers in your ear. “The fault lies with those around you. The problem is your awful circumstances.” Fear further admonishes: “Worship your heroes. They have the power to solve your problems, to save you. They can make you happy.”

It’s a con. What matters is that you accept the reality fear has created for you. Sidelined, you are a cooperative participant in that unfounded reality. You don’t question the premise. You play nice. You abdicate responsibility. You blame some and credit others. You outsource your destiny.

I was trapped in my awfulized world by the promise of rescue. My heroes, brilliant research scientists, would deliver a treatment or a cure for me. I was certain of it. Because they would soon rescue me, I did not need to confront blindness. I did not need to rescue myself. I was paralyzed by hope.

I was science’s active, enthusiastic fan. Shortly after the diagnosis, my parents set out to understand the state of the research on treatments and cures. They began working to raise charitable funding, turning to friends and family for support. They found a community of immense generosity and selflessness, one that grew larger through the years and achieved remarkable fundraising successes.

I joined my parents in their mission, as a spokesperson in the media, at fundraisers, and in lobbying efforts. I later founded and ran a nonprofit organization called Hope for Vision to coordinate our philanthropic activities with those of other communities nationwide. My parents and I celebrated the researchers and worked to fund their efforts. We will always feel immense gratitude for those who supported us.

Looking back, however, I realize that my crusade for a cure played into the hands of my fear. I felt I was taking control, swinging at the proverbial curveball life had pitched my way. I wasn’t.

Denial And Acceptance

I confused fighting for a cure with confronting my fears. Psychologists have a term for this, too: denial. I thought I was taking a stand when I was really running away. My fight for a cure fueled the flames of my fears. I was reinforcing the awful narrative–blindness as death–by committing myself to its defeat at the hands of science.

In the end, blindness won, science lost. The dark imaginings of my fears never materialized, however. I faced them, took control, and created a very different reality for myself—one with immeasurable joy, fulfillment and success.

Blindness no longer scares me. I understand its every detail and every practicality. For me, blindness is familiar, comfortable, normal, routine. I need to remind myself that this aspect of my existence is terrifying to other people. I have to remind myself that, years ago, it terrified me, too.

I remember my fears the same way you might remember cowering in your bed at night as a child, frightened of the monster you imagined underneath. You know now that there never was a monster—that your fear was irrational, self-imposed, the product of your imagination. You can recall feeling terror back then, but when you lie down tonight, you won’t feel afraid (not of monsters, at least). That’s how I feel about blindness. It’s the monster that never existed.

Had I failed to reckon with my fear, however, I would have lived its awful reality. I’m certain of that.

As I lost my sight, I gained a vision. We create our own realities, in every moment. It’s our ultimate power—to choose how we want to live our lives and who we want to be. I saw this as I went blind, and I chose to make my destiny my own.


This article is adapted with permission from Eyes Wide Open: Overcoming Obstacles and Recognizing Opportunities in a World That Can’t See Clearly by Isaac Lidsky. © 2017 by Freshly Squeezed Citrus, LLC. TarcherPerigee, an imprint of Penguin Random House, LLC.

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