Hektoen International

A Journal of Medical Humanities

Waiting for the darkness to lift

Sheila Klass
New York, New York, United States

Amsler chart with macular degeneration

From early childhood I wanted to be a writer and tell stories. But Mama and Papa, impoverished and struggling to survive at the end of the Great Depression, scoffed at such ideas and insisted I should be enrolled in a commercial course so that I could have a secretarial job. I resisted. I chose a pre-college academic course, though there wasn’t a chance in hell that I would go to college.

Then things changed. Brooklyn College in the 1940s had a single yearly fee: $25.00. Suddenly, it seemed possible! The war had removed many male competitors for college places. I took the entrance exam and passed. I was joyful. My parents objected strenuously; we battled, and I left home to be a live-in babysitter for a family near the college. I was on my own.

Four years later, I had a bachelor’s degree in English and the same dreams. I wanted to go to graduate school, but I needed to support myself. I got a job at an institution that trained returning veterans to make false teeth. I handled the front desk; hardly handled, for I could neither work the intercom system, nor type accurately, nor take dictation. I kept that job, thanks to the compassion and generosity of the head of the school—he could see how hard I was trying. He was a nice man, and kept me on. He had once dreamed of being a poet before false teeth chewed up those dreams.

Then in the fall of 1949, the Writers’ Workshop at the State University of Iowa accepted me, and I used my savings to go. Now, sixty-some years later, I have published 19 books and written countless others, as well as many short stories and essays. All neatly edited—by me; when God gave us word processors and computers, I felt blessed.

And then, years later, on the last Saturday in June, 2011, disaster struck. When I opened my eyes, the slats in the Venetian blinds were wiggly, distorted and oddly broken, and the light in my bedroom was awry, muted, and very yellowish.

I have an Amsler chart on my refrigerator, which is simply a postal-card sized sketch of neat lines and boxes; I glance at it every morning, because if the lines are distorted or the boxes are broken, that’s an indication that macular degeneration has attacked my eyes again. I had lived for years with glaucoma in both eyes and macular degeneration in the left eye. These ailments had been competently controlled, but there was always the danger that the macular degeneration would change from dry to wet and spread.

My window shades were exactly like broken lines on the Amsler chart.

I panicked.

I struggled to get dressed, intermittently stopping to call the doctor. Desperately, with great difficulty and many wrong numbers, I tried to hit the correct buttons on the phone. I must have been at it for some time.

My own doctor was not there. I was connected with the emergency service at the Harkness Eye Institute and given an appointment with the covering ophthalmologist.

Still panicking, I traveled there by bus. Bumbling, tripping, terrified, I finally cowered in a seat listening for my stop. My lack of vision made the usually familiar bus atmosphere alien and hostile. Smelly and dark!

At the hospital, I was given a number of tests with all sorts of machines, and then the ophthalmologist examined me. Macular degeneration had spread to my second eye. I wondered if he would treat it with the remarkable drug, Avastin, a shot I had been getting periodically in the eye. Unfortunately, he saw a fresh bleed, and once a bleed occurs, Avastin cannot repair the damage.

He was very sympathetic, but there was nothing to be done. He said my own doctor would not be back till Tuesday and there was nothing to be gained by having a new doctor handle it.

Once home, exhausted, I called my children. My son insisted I come stay with him. My panic was assuaged when my daughter managed to contact the eye institute and persuade the doctor who had seen me that morning to arrange for a Sunday appointment with a retina specialist—though he warned my daughter that it was unlikely to make any difference.

Sunday, we went to see the retina specialist. The doctor administered another shot of Avastin, but warned me that it was a prophylactic drug; it would prevent more hemorrhages, but it could not fix the damage already done.

Several days later, when I saw my own doctor, he confirmed the worst; it was massive bleeding. He had cautioned me all along that Avastin was useful but not a miracle cure. He explained that my situation was serious, but he promised to look into whether anything at all could be done.

“Anything,” I begged him. “Anything experimental. I’d be a willing guinea pig.”

At this point, I insisted on going back to my own apartment. I heard my doorman’s greeting but did not see him. The elevator was impossible; fortunately, I lived on the second floor, so I held onto the banister and carefully felt my way up the stairs. The keyhole became a major problem, but my clumsy fingers found it eventually. Bravely, I made myself a cup of tea, but I had to mop up after pouring because I had widely missed the rim of the cup. My vision was barely working, and I could see no details—nothing small. Even reaching for a light switch or turning on a faucet took several attempts and wild misjudgments with much knocking about.

Those first black days I was akin to the walking dead. When I looked into the mirror, I did not see me. I saw a grey amorphous mass, occasionally a familiar feature flickered by for a second, depending on how the light hit the glass. I could see bits of my hair—just wisps and remnants—but I never saw my entire face in the mirror. It was as if I’d been totally eclipsed.

So had all print. Then and in the days and weeks and months afterwards, I constantly—and vainly—sought to read large print. No luck. The letters had all vanished. No reading, no writing forever, I told myself. I tried to function but I was in absolute despair. My one real triumph was that I navigated the subway without difficulty; I couldn’t read, but I counted stations. I took the subway to the Lighthouse for the Blind, where I bought a talking wristwatch and a talking alarm clock.

I had constant defeats. I tapped the mouse on my computer and could not even find the cursor. I tried to write my children’s telephone numbers very large with black Magic Markers but my printing was incredibly crooked and ran off the page. I couldn’t read what I’d written. I shopped for familiar groceries but made wrong and bad choices—microwave dinners though I have no microwave oven—and I was too shy to seek help. I am an independent person, that same nervy high school girl who left home at seventeen. Actually, beneath the independent person lurks an absolute coward.

And then—five days after the catastrophe—the doctor called and said there was an experimental treatment possible!

“I’ll do it,” I said immediately, babbling wildly. I had infinite faith in him, but I think I would have taken any risk, tried anything! I was blind!

He reined me in, offering assurances that we would not attempt anything that might do more damage. We were going to try “gas.” I had no patience for the details. I wanted to do it! So the next day I went back to my doctor.

“I am ready,” I greeted him.

“Good. I am giving your daughter a journal article to read. It describes this procedure,” he said.

“Pneumatic Displacement of Sub-retinal Hemorrhage,” she read aloud, and when I waved my hand impatiently, she studied it silently. I could hardly contain myself. I was more than ready; I was eager.

Forthwith, the doctor gently injected the gas into my eye and immediately, a large bubble like a black marble danced madly on the periphery of my right eye!

Then he painstakingly detailed the routine. I had to sit for every waking hour during the next week or so, my head sharply inclined forward, staring down at a single object on the floor, while the gas bubble tried to dislodge the blood left by the hemorrhage. The blood would not go away; it would simply be displaced. And I might again see!

Thus, obediently, I sat—in my daughter’s living room for the next week, eyes fixed on the lone Kleenex box set on the rug—and I willed the valiant bubble on. The days passed slowly—at last it was time to return to the doctor.

I was absolutely blind.

He, of course, could not and would not predict results. It would be months before we’d know anything. Each patient was different. I would have to wait—literally—to see. He was frank, cautioning me that even if some sight returned, the ability to see print was unlikely. But, indeed, we would have to wait to see.

Helpless, with nothing to do but brood during those long idle hours, I began to have sad regrets and to relive my adolescent battles with my parents that drove me from home so long ago.

“Forget the writing business. Be a secretary,” they’d urged. Had I become a secretary, I thought, I would be able to type without seeing the keyboard. But common sense rescued me from madness: Had I become a secretary, I would not be me now—no Iowa Writers Workshop, no life as I’d chosen to live it. I’d be someone else.

Staring blind-eyed at the Kleenex box, I absolutely knew my parents had been wrong, and I felt strangely calm. Still scared, but at peace. Truly. And during the difficult months that followed, as I waited for the darkness to lift, I sometimes longed for the vaunted secretarial skills my parents so revered, but never for the concomitant life.

I offer this essay as irrevocable proof of the rightness of my adolescent judgment. My eyesight did return slowly—severely damaged—but I am seeing and reading and writing. All that happened to me has radically changed my ideas about prose; I now believe that even the grimmest non-fiction can truly have an incredible happy ending.

SHEILA SOLOMON KLASS, MFA, was brought up in Brooklyn and educated in the New York public schools. She attended Brooklyn College and did her graduate work in the Iowa Writers Workshop run by Paul Engel. First she taught English in a Harlem junior high school, then went on to teach at Borough of Manhattan Community College, CUNY, where she still teaches, now as professor emerita, after 47 years. She is the author of nineteen books, adult fiction, young adult novels, juvenile biographical fiction, and nonfiction, and coauthor (with her daughter) of a memoir, Every Mother is a Daughter. Her most recent book is Soldier’s Secret: The Story Of Deborah Sampson.

Highlighted in Frontispiece Winter 2013 – Volume 5, Issue 1

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.