GOING BLIND

BLOG #50, SERIES #5
WEDNESDAYS WITH DR. JOE
GOING BLIND
December 10, 2014

My wife and I often travel on Southwest Airlines; whenever we do so, I like to peruse their in-flight magazine, Spirit. The cover story in the July 2014 issue was titled “As the Lights Go Down.”

Nicole Kear begins her gripping story with these riveting words: “The day I found out I was going blind started out like any other.” She was nineteen years old, a sophomore at Yale, undecided as to whether to major in English or in theater.

A routine appointment with her doctor turned out to be anything but! The eye-specialist shattered her dreams by announcing that she had a degenerative retinal disease called “retinitis pigmentosa.” My retinal cells were slowly dying which would result in gradual vision loss. First the disease would eat away at my night and peripheral vision, and eventually it would claim my central vision too…. It was untreatable and incurable.

As she walked the twenty blocks back to her home, she was overcome by wave after wave of fear: “But more than anything, I felt instant and irrevocable loss, like a kid who’s just lost her grip on a helium balloon. I made a grab for it, fast, but it was too late, and I watched helplessly as it receded, further and further out of reach.”

As time passed, she felt for a time that she’d be crushed under the strain of knowing that darkness was inevitable. “But something else was happening, too. Through the fog of my shock and confusion, I started seeing everything with the eyes of someone looking for the last time. Sights I’d always taken for granted–the bits of sparkle in the pavement, the bright, brilliant red of the streetlight–seemed immensely, heart-breakingly beautiful. I’d wasted so much time, I scolded myself, being blind to the beauty around me. Knowing it wouldn’t last forever, I became ravenous for images.”

So how was she to face it?

“Though I couldn’t control my disease or the blindness it could bring, I could control how I responded to it…. In the time I had left, I could stuff my brain with images in hopes they’d be enough to last a lifetime. I could use the death sentence my eyes had been given as a kick in the pants to start really living.”

Time passed. One afternoon, she sat down with her leather-bound journal and drew up a personal bucket list of things she wanted to see and do before her vision gave out. She called it her carpe diem campaign.

She double-majored in English and theater, learned how to be a circus clown, learned how to master the flying trapeze, and traveled to Europe. In Rome, “I sat in front of the Pantheon, drinking in every column, every chiseled Latin letter, sketching these details in my journal in an effort to permanently imprint them on my memory.” She picked sweet-peas on a farm in North Italy, hiked cloud-capped mountains to see where Ovid had lived, watched men on Vespas smoking cigarettes and women gossiping while leaning out of windows, and smelled the sweet aroma of marinara sauce simmering on stovetops. “Spending all the money I’d saved from birthdays and graduations, I bought a Eurorail pass and set off with my sister to Paris, where we watched Grand Guignol puppet shows, and Amsterdam, where we stood by narrow canals eating wheels of black licorice. I witnessed the sunrise over Venice’s Bridge of Sighs, and I felt near to bursting with awe at the beauty and the grandeur.”

After college, she moved back to New York, where she performed Shakespeare in the lower East Side, 1950s cult classics in the West Village, and avant-garde German theater on St. Mark’s Place.

She fell in love several times–but finally the real thing: David proposed to her in the middle of the Smoky Mountains.

Next came Hollywood: “I was an actor, after all, and in L.A. the streets were paved with TV pilots. David and I quit our day jobs as long-term temps at an investment bank, packed our stuff, and ventured west. I was bowled over by California’s beauty. Rolling, golden hills that looked like sleeping lions. Jagged cliffs with precipitous drops to the churning, foaming Pacific Ocean. Even the light was different, and the smells. Every time I walked out my front door and inhaled the scent of jasmine, I stopped to marvel . . . sniffing jasmine blossoms made me feel like a Disney princess.”

Driving became more and more difficult. She’d become totally night-blind. As her field of vision continued to shrink, she bumped into things more and more, and fell down stairs–and fumbled her stage-lines.

Then she discovered she was pregnant. But now, color-blindness was setting in, and her depth-perception was going too. Even so, She and David decided to go ahead with it. “When my son made his entrance, just after midnight on Thanksgiving Night, I soaked in so many sights: his strong chin, bee-stung eyes, the complex curvature of his ear, so tiny it made my heart ache with tenderness…. Two years later I saw my daughter for the first time, a ruddy, round-cheeked newborn sporting a Mohawk.” There were details she couldn’t see, but she didn’t worry about that.

By the time she was 34, she was deemed legally blind. She could no longer read regular print. Even so, she decided to have another baby. “My third baby is now 2 years old, and I’ve been able to read her books (if the text is big enough), take her to the playground (if it’s enclosed), and watch her blow out her birthday candles.”

Nicole Kear concludes her remarkable story with these poignant words: “But I’ve learned not to peer too anxiously into the future. Hindsight may be 20/20, but what’s to come is too murky for any of us to make out. My eyes are so dim that I need to train them on the present, to soak up as much as I can, to slow it down, to make it last. As much as I can, I stop to smell the roses–and while I’m there, I look at them, long and hard. Those blazing red streetlights. The way the skin on the top of my children’s noses wrinkles when they smile. . . I don’t know the kind of life I might have had or the kind of woman I might have become if that appointment 18 years ago had actually been routine. . . . What I do know is the life I have is nothing like what I expected, but it is everything I wanted–full of beauty, love, and a light beyond anything the eye can see.”

Nicole Kear is the author of the new memoir, Now I See You.

* * * * *

Four months after reading this, on a 55th anniversary cruise from San Diego through the Panama Canal to Fort Lauderdale, my eyes became progressively more difficult to keep open, and the pain increased continuously. In Fort Lauderdale, our son rushed me to an eye specialist.

I can now see again, but it has resulted in a profoundly greater appreciation for the daily miracle of sight.

I conclude with this quotation penned by Harry Moyle Tippett:

Out of a world of total silence and darkness Helen Keller found a way to a world of light and holy purpose. In the top floor bedroom at Forest Hills . . . there were eight windows looking out into a vast expanse of blue sky by day and of star-studded velvet by night. Small strings guided her steps to the sanctuary, and there she reveled in an inner illumination that matched the glorious light of day she could not see and the silver sheen of stars she could only feel. She said, ‘I learned that it is possible for us to create light and sound and order within us, no matter what calamity may befall us in the outer world.’