by Andrew Potok
I settled here with my children after the breakup of my first marriage in 1963. During the nine years we were married, Joan and I had moved from France to Italy to Spain and finally to Greece, where we thought we had come to the end of our search for the ideal landscape for me to paint in, for Joan to write in. But when we separated, I was driven to find a real home, and Vermont, where my sister Anita lived, felt like a haven. As Mark and Sarah boarded the yellow school bus each morning, my fantasies of roots and permanence were satisfied. I wanted my children to grow peacefully in the ancient Vermont hills, in the rugged domesticity, tied by climate and poverty to a previous century.
I tapped the sugar maples, enlarged the apple orchard, planted a garden. I dreamed of a small Fontainebleau in this part of my forest, landscaped with paths, benches, lights, islands of moss-covered rocks surrounded by wildflowers and beds of velvety pansies.
The Vermont seasons, which not too long ago determined the variety of my sensual pleasure and activity, have a different significance for me now that their visual lushness has disintegrated into hazy fragments of gray. I now heed the odors and the sounds, the changes underfoot from snow to mud to dust to carpets of leaves. My face is aware of the dancing shadows of poplar leaves and the dense shade of maples. In the fall, I see no changing colors; in winter, I am blinded even more by the glistening whiteness; in the spring and summer, I am back to the blurred and broken vibrating parts of things.
Having walked a brisk two miles, mostly up, I turned back down again. Charlie was panting harder than I. We lost the kids and half the dogs somewhere along the way. Where we turned, I saw a moving form behind a wire fence and automatically raised my arm in neighborly greeting. It turned its profile to me and I saw a large, friendly horse. But, I thought, it might easily have been farmers Perry or Batchelder, both of whom would have been insulted if I hadn’t waved. Waving is an important social activity in this small town. Pedestrians wave to cars, cars to pedestrians, cars and trucks to each other. The most enthusiastic wavers are former city people, like me, who have settled here, never having waved to anyone but a taxi before. No longer able to distinguish cars or drivers, or horses from people for that matter, I keep my head down, feigning distraction; in especially happy moods though, I wave indiscriminately, too mechanically I fear to friends, too effusively to strangers.
My little bit of sight caused endless misunderstandings and confusions, but tattered and frayed as it was, it, plus memories of a marvelously visual life, was my cherished link to the sighted world. At St. Paul’s Rehabilitation Center, where at the end of 1972 I studied the skills of blindness for nearly four months, we used to argue, the fifteen of us in various stages of blindness, whether it was preferable to lose one’s bit of remaining vision and be finished with adjustments and hope, or to nurture what remained, use it as efficiently as possible, and thank God for it. To me, it seemed unspeakable to consider total blindness preferable to even the slightest amount of sight. Since then though, it hasn’t been all that clear.
As my sight diminished even more, still tantalizing me with hints of color and shape, the voices promising an end to blindness and disease became more appealing and urgent. Why shouldn’t someone somewhere—why not a beekeeper turned healer—have found, perhaps by accident, the catalyst needed to awaken the enzyme to feed the retina?
Everyone in my family, no matter what the ailment, has always gone to “take the cure.” For the relief of gall-bladder or kidney problems, arthritis, or the normal wear and tear of life, they went to the baths, where the reeking waters or putrid mud, in conjunction with sycophantic doctors, were credited with doing what was likely done by the journey, the company, and the change of air.
The rich have always pursued in leisure what the rest of humanity has attempted with varying degrees of hardship: to limp, crawl, or grope to the spa, the well, the shrine, the temple, or the witch’s hut to be given exotic concoctions of herbs and animal parts, bubbly liquids, and rejuvenation pomades, to be made whole, to be made perfect, to find eternal health and happiness.
My parents went to Carlsbad or Marienbad; even I, though never sent beyond the borders of Poland, would be packed away with my governess to the mountains or seashore when I showed signs of croup or catarrh, a dry cough or wet.
A car slowed behind me. From the burning rubber and flying gravel, I knew it was Roy. “It’s Roy,” boomed my friend’s voice from inside. “Having a good walk?”
“Listen, Roy,” I said, finally able to blurt it all out. “You know that article I gave you about the bees? Well, I’m going to England. . . .”
“When?” he asked, not quite believing.
“Tomorrow,” I decided. “Yes, tomorrow.”
Roy drove us home, for suddenly there was no time for strolling. Charlotte was out. I went through my telephone book, calling everyone. “Look, I’ve got to try it,” I repeated to each of them. “I’ve never done anything like it before.” Then, especially if I suspected some resistance: “Wouldn’t you if you were in my place?”
I was troubled about divulging the intensity of my sudden faith to the professionals—the doctors, social workers, medical-school professors—the ones who had gone out of their way to make room for me, to train, supervise, accept, and support me. I felt particularly vulnerable to derision. What I feared was not that everyone would turn against me or censure me publicly, but that they would slowly lose interest and abandon me to my unpredictable whims and fantasies.
I pictured them all on a conference telephone call. Each of them sat in his or her office or clinic, feet planted firmly on the shiny vinyl or salt-and-pepper rug, each white-coated figure framed by a veritable gallery of plaques from honorary societies. “Did you hear what happened to Andy?” Dr. Stechler was asking. “Poor bastard. He’s gone off the deep end.”
“Yeah,” said Dr. Berson while leafing through a stack of research data, “we sure made a mistake about him.”
I plumbed our conversations for hints of judgment or accusation, for now that I was going blind, everyone’s opinion but mine seemed to matter. They mostly wished me well. Some seemed inordinately moved, some said I was brave, some were surprised by my desperation. Everyone urged me to prepare for the terrible disappointments of failure.
Not far below my surface, I found a desire, so strong as to be frightening, pushing me toward magic, quick solutions, a deus-ex-machina ending. Helga Barnes’s voice was penetrating and seductive, the voice of a woman, a European woman—my mother?—who would touch me, change me, make everything right again.
I called my mother. “Someone must go with you,” she said.
“I think I’d like to go alone.”
“What’s the matter with Charlotte?” she asked. “Doesn’t she want to go? Never mind. I’ll go.”
“I can really travel alone, you know,” I said.
“Will you need money?” she asked.
“Not yet. Mrs. Barnes didn’t mention money.”
“Well,” she said, “the fortune-teller predicted that this would be a very good year for you. Perhaps this is what she meant.”
“I don’t take your fortune-tellers lightly,” I assured her. They always seemed to predict the events of all our lives.
“And your horoscope is terrific,” she added.
My mother is over eighty, goes to her office, Maximilian Furs, for a minimum of eight hours a day, and is, as she has been for some sixty years, at the top of her profession.
Freda assured me that she could manage our group without me, though I heard disappointment in her voice. Dr. Lubkin, my eye doctor, wanted to be sure that I wasn’t allergic to bee stings.
Then I called Dagmar, the director of the clinic where I worked. When in Boston, I lived in Dagmar’s house and relied on her encouragement and support.
“I can’t believe it,” she said, unable to control her anger. “How can you even consider this ridiculous cure? How can you sink into this emotional, unprofessional stance?” She was furious. “Have you l
ost your mind?”
“But Dagmar,” I replied shakily, and pulled out my trump card, “wouldn’t you do the same if you were in my place?”
“I certainly would not. How could I? I’m a professional.” She paused a moment, then asked: “Don’t you believe in science?”
“Listen, Daggie, listen,” I pleaded. “In the last few years I’ve seen ophthalmologists, optometrists, social workers, counselors, psychiatrists, peripatologists, braille teachers, rehabilitation specialists, and God knows who else. I have become a patient and a client. . . .”
“Of course you have,” she said. “You have a horrible eye disease and you’re trying to cope with going blind. . . .”
“But you know damn well,” I said, “that I’m just being tested and diagnosed. I’m being taught this and that, and anytime I want it and can afford it, I can be rediagnosed. . . .”
“They have to diagnose,” Dagmar said, “in order to cure.”
“Tell them to stop, Daggie, because they can’t cure.”
This ever-growing galaxy of professionals around me made charts and graphs, they tested my sanity, evaluated my skills. They gave advice, they listened, they guided. They gave me reading services and sold lenses, devices, and special appliances. They took blood, they took urine, they took photographs. But they couldn’t stop the slow, sure dying of my eyes.
Dagmar drew a deep breath. “What about your group?” she asked. “You can’t just leave them.”
“Freda agreed to do it alone for a few weeks. Anyway, the group wants me to go. . . .”
“Yeah. Sure,” she snapped. “You should know better.”
I felt devastated and afraid. I couldn’t stand a single bad review.
I consoled myself with thoughts of my children. I knew that I didn’t want them to remember me as bowing to the awful demands of my condition. I didn’t want them to think of me as a blind man, coping as best he could. I wanted to be a hero to them. I wanted them to watch me take risks, be outrageous, reach beyond the ordinary. I had been depressed long enough, and my daughter, Sarah, who was eighteen and who already showed signs of the disease, could use a happier, more spirited model. What if she had forgotten what I was like once? Did she remember playing ball with me or being chauffeured by me? Did she remember the motorcycle, the skis, my life as a painter? I wanted my children’s respect and admiration for what I had been, not for what I was becoming.
The child inside me responded with its old passion. This child didn’t want to deal with acceptance or adjustment or to be “rehabilitated.” This child would kick and scream and finally get his way.
Even though some artist friends once told me, as it became clear what would happen to my eyes, that they envied my opportunity to be a blind artist, like a deaf Beethoven, I saw no way of continuing my art. If I continued, the best I could hope for would be an exhibition in the lobby of the Lighthouse or the halls of the American Foundation for the Blind. I could make the pages of somebody’s newsletter, a footnote in a rehab journal. No handicapped Olympics for me. I wanted the real thing. I would go down swinging in my way, and it seemed that Helga Barnes ran the best show in town.
My son, Mark, home from Chicago, said: “If it works, great; if not, you can always touch those Arabs for money for RP.” And Sarah, dear Sarah—if this works, I’ll send for her and she too will never be blind.
I reserved two places on the 747 from Montreal and called Charlotte at her women’s meeting. “Can you come with me to London tomorrow?” I asked.
“Jesus . . . How? . . . Who’ll take care of the kids?”
“Let’s just go. We’ll share something extraordinary. God knows, we need it. If nothing else, we’ll pump some new life into this marriage.”
Charlotte came home with the whole women’s group. They were mostly divorced or divorcing, many of them making their first sustained efforts into new careers. In this community, which reinforced variety and change, they were pushing for their own rebirth. They had already organized everything: who would stay with Jed and Maya, Charlotte’s kids, who were still young enough to need adults around; who would feed the dog, keep the fires burning.
That evening a friend called to confirm the poker game for the following night. “I can’t play tomorrow,” I said. “I’m going to be in London.”
“Right,” he answered without a pause, “good thing you reminded me. I have a luncheon meeting in Buenos Aires.”
Charlotte and I never did go to sleep that night. We spoke about the unspeakable, the changes I knew would come into our lives. We made love off and on all night, as in the old days, and bewildered by the progression of events and feelings, we cried.
THREE
ENGLAND IS NOT THE LANDSCAPE I would have chosen for great transformations. I might have expected miracles from an isolated hogan in New Mexico or from the ruins of a temple to Apollo found on the line bisecting the dip between two mountains in Lesbos. But this was grim and stolid London, bulging with banks and shoe stores, where even the first contact with immigration at Heathrow infects me with uneasiness, a shade of guilt for some undesirable person inside me: the anarchist bomb-throwing Jewish radical, the smuggler of two joints.
“Business or pleasure?” the man in uniform asked, scribbling something.
“It’s pleasure,” I said. “I’m here for my eyes. . . .”
“Are you blind?” he asked, looking for a sign.
“No,” I said. “Nearly, but not blind.”
“Do you have sufficient funds?” he asked. No parasite blind folks for his island.
“Oh, yes,” I said. “No problem. I’m just here for a few weeks’ cure.”
“And where will you be cured?” he asked rather sardonically.
“Mrs. Helga Barnes,” I said proudly.
“Mmmm,” he said and peered at me over his National Health Service glasses. I tugged self-consciously at a few strands of longish hair hanging over my collar.
Sta, in a natty Burberry and fedora, met us as we came through customs. My favorite uncle and I hadn’t seen each other since my father’s funeral in New York ten years before.
“Let us telephone Mrs. Barnes straightaway,” he said, his eyes moist with feeling, his face beaming with a broad smile. He simply couldn’t wait to get this bothersome problem of mine settled so that we could all enjoy our stay in London together.
Sta vanished into a phone booth, and we heard him clear his throat carefully then say in his best imitation of the Queen’s English: “I’m so sorry to disturb you, Mrs. Barnes. This is Potok speaking hee-yah.” He talked slowly and distinctly, appending a musical drawl at the end of his phrases, heavily accented with Polish. “Potok,” he said. “Po . . . tok . . . Po, Po, Po. P as in Peter. Yes, that is correct.” He paused. “My nephew has just arrived from America,” he continued. “Hello! Hello! Am I not speaking with Mrs. Helga Barnes? I beg your pardon?” he asked several times, and then, with perplexed resignation, he placed the phone back in its cradle. He seemed suddenly to understand that we were undertaking something more complex than he had imagined. “I could swear it was Mrs. Barnes on the telephone,” Sta told us, “but she insisted I call back in an hour. I think she was trying to imitate an Irish girl.”
We got on a steamy double-decker bus to Victoria Terminal. Charlotte and Sta sat next to each other, across the aisle from me. They were making the stiff gestures and sounds of a new acquaintance, no doubt eyeing each other carefully with their peripheral vision. They gesticulated and laughed. They talked too loudly due to Charlotte’s unwillingness to admit that her Boston accent glanced off foreigners, and Sta ’s conviction that his amalgam of English and Polish flowed as easily as the confluence of two great rivers. And they got caught in uneasy silences, spent refurling their umbrellas, clearing their throats, and reaching across to touch my hand or knee.
Looking through cloudy retinas and the sooty bus window into the dismal rain, I wanted it all back: the painting, the driving, the reading, all of it. I hadn’t been in Eng
land for twenty years and now could scarcely see it. Sta, I knew, would gladly make great sacrifices if I could be healed. He felt somewhat implicated in the transmission of the RP gene, which had traveled from his mother to me and thence to Sarah. And, besides, he loved me.
The roots of my blindness have been buried with the lost genealogy of the Jews of Poland. My ancestors, through their marked preference for marrying cousins, made a casserole of their chromosomes, producing no freaks or idiots but their share of depressives and the gene for retinitis pigmentosa.
In my family, we own the dominant gene, though it’s an uncommon form of dominance that sometimes skips generations. As such, my grandmother passed it to my father, who was unaffected by the disease and unsuspectingly gave it to me. I, who should have known better but was afraid to ask about its genetic character or to look in medical texts, passed it on to Sarah.
Retinitis pigmentosa affects the light-sensitive cells of the retina—first, usually for many years, the rods; the cones most often late in the disease. The screen layer at the back of the eye, the retina, consists of some 140 million rods and 7 million cones. Rods exist everywhere in the retina except the very center, and they allow us to see in dim light. Cones exist in relatively small numbers throughout the retina, but the center, the fovea, is their exclusive domain. They allow us to see color in bright light. There are finely differentiated cones, some dealing only with the color red, some with blue, some with green. Color mixing occurs in the brain, the creator of the full visible spectrum.
Sometimes RP starts early in life and devastates the entire retina in a few short years; mostly, as with me, it is relentless but slow, destroying sight over a lifetime. It generally begins its course on the edges of the retina, exterminating the normally dense rods and, with them, one’s night vision. It progresses toward the center and, typically, before total blindness, leaves one with a small area of functional vision known as “tunnel vision,” which describes my grandmother’s condition at the end of her life, and therefore what I expected. But in my case, the centers of my eyes have also been dying, thus wiping out vision from the inside out as well as from the outside in.