This the story of Potok’s remarkable odyssey out of despair. He attempts to come to terms with his condition: learning skills for the newly blind, dealing with freakish encounters with the medical establishment, going to London for a promised cure through a bizarre and painful “therapy” of bee stings. He wrestles with the anguish of knowing that his daughter has inherited the same disease that is stealing his own eyesight. And then, as he edges ever closer to complete blindness, there comes the day when he recognizes that the exhilaration he once found in the mix of paint and canvas, hand and eye, he has begun to find in words.
By turns fierce, blunt, sexy, and uproariously funny, Andrew Potok’s memoir of his journey is as shatteringly frank as it is triumphant.
|Publisher:||Random House Publishing Group|
|Edition description:||Bantam Trade Paperback Edition|
|Product dimensions:||5.10(w) x 8.20(h) x 0.62(d)|
About the Author
Read an Excerpt
I had come to that point in my life when I felt that no matter what I did I had nothing to lose. The day-by-day losses of eyesight, slow and inexorable, took with them my life as a painter, my sources of pleasure and intelligence, my competence as a man. Pleasures I had taken for granted--the recognition of landscape, the coordination of hand and eyes, ordinary daylight--were slipping away. But going blind and passing forty, with dreams of youthful heroism and virtuosity gone forever, seemed, at times, too hard to bear.
All those downhill things that happen in spite of the marvels of science were now happening to me. My dentist, seeing a relentless decay infiltrate the hidden crevices in my mouth, suggested, as I lay under his bright lights, my mouth full of rubber dams, suction tips, and hard metal, that he pull all my teeth "so you don't have to worry about receding gums or that goddamn plaque."
I nearly choked as I sprang up, still connected by hoses, yelling through the spray and bubbles: "Driscoll, Driscoll, try to understand! I can't take it anymore, not one more loss!"
He moved away to his sink and began washing his hands. As the nurse untangled me, he leaned against a wall. "Look, Andy," he said, "we'll try to fix the damage. We'll do the best we can."
Some forty years before, my mother had taken the train from Warsaw to Vienna to have her teeth "done," but she was a rising star in the fashion world then, sure of her powers and much in demand. Nevertheless, the bad teeth came from her. The gene for retinitis pigmentosa was my father's gift.
I walked into the waiting room where every chair was occupied by a shadow, one of which was my wife. "Charlotte?" I said tentatively, and the appropriate shadow rose, put away her glasses, then the magazine, and took my arm.
"Jesus, what happened to you?" she asked. "You look white."
"He wants to yank my teeth," I said.
"He what?" Charlotte asked as I pulled her into the coat closet.
The nurse poked her head into the foyer. "Mr. Potok, the doctor wants to know when you can come for a double appointment. . . ."
"Tell him I can't," I said. "I'm going away. I'll call when I get back."
"Where are you going?" Charlotte asked as we walked down the stairs into the parking lot, my hand clutching hers.
"I don't know. I can't take it anymore. London . . ."
"London? That's nice," she said, humoring me.
"I mean it. London. The bees . . ."
"The what?" she winced.
"The goddamn bees!" I yelled. "The Observer article."
"The one Mary sent?" Charlotte asked fearfully. I leaned against the door as far from her as I could and looked out at the black-and-white jumble. We drove in silence for a while.
"You're nuts," she said under her breath. Vermont, after the long stasis of winter, was at its worst, the snow sinking slowly into barren, slimy mud.
"I can't see a goddamn thing. I hate my work. I'm no good at it. . . ."
"Oh, Andy," she said softly. "You're learning. Everybody says you're terrific. . . ."
"I'm not a social worker," I complained. "My thesis stinks." Nothing was going right. My reading, a euphemism for listening to tapes, usually put me to sleep because my body wasn't engaged in book holding, page turning, and eye movement. And I couldn't stand the boring psychology texts, the soft, sweet counseling books that were eventually to give me a degree, a Doctorate of Listening or something like that. I craved movement, a leap, a risk. I remembered my Yale days when we divided the world into poets and plumbers. This patchwork therapizing felt like plumbing, Band-Aid work, makeshift coping stuff.
"People have gone out of their way to help you get started," Charlotte was saying. "And what about your group? What will they do if you leave?"
"My group? You'll see, they'll want to come with me. . . ."
We got off Route 2 in Plainfield, sloshed by the Methodist church, the village store, and onto our dirt road, heaving and swaying in the potholes and ruts. We pulled in by the kitchen door, and I crossed the road to check the mail. The mailbox overflowed with black cases full of recorded books, cartons of taped material, letters and announcements from organizations "for the blind" and "of the blind," all covered with white canes, eyes, beacons of lighthouses, the terrible symbols of a dreaded new world. I was invited to join in the battle against blindness and disease, to send blind children to camp, to demand my new rights, to ask my congressman to support eye research. I was incited into outrage at the treatment of the handicapped. I was sent newsletters picturing happy blind students at the White House, the smiling faces of movie stars lending their names to national campaigns to prevent this, promote that. I was provoked into shock that a blinding disease such as mine existed in spite of the miracles of American medicine.
This nightmarish mail had started coming when I was pronounced "legally blind." The very first of it was a mimeographed sheet, hardly legible even to Charlotte, announcing a Christmas party for the blind of Central Vermont at Christ Church. Volunteers were to serve punch and tea. Everyone was to receive a present. I fretted about it for several sleepless nights. I was now blind, blind like them. Blind meant lonely and abandoned, cared for by special people, sanguine, dour, also lonely. Blind meant shuffling, groping, forlorn. It meant cheap paper crookedly stapled, badly mimeographed. How long could I postpone meeting others like me? I wanted to sleep through that Christmas.
I walked back to the house. My children were home for spring vacation and hard rock music shook the old walls, the hand-blown glass in the windows. A faint smell of marijuana still lingered on their clothes from the night before. Charlotte flew through the kitchen debris and into her studio. I heard the latch click. I put my record on and began pacing. A Beethoven quartet usually cleared the house of kids and cleared my head as well. I tried to conjure images of the woman in London who used bees to cure retinitis pigmentosa. Nothing worked on this damned disease. Why not try bees? A short time before, a noted researcher in the retina field had told me, as we sat in my orchard under an apple tree, that they knew so little still about the retina or the causes or biochemistry of the disease, that "you can expect a cure by accident, maybe," he said looking around, "from the blossoms of apple trees." Apple blossoms? Why not bees?
My living room is large and comfortable. My friends like to sit in it, under my old paintings. The night before, several of us had sat here talking, brainstorming, trying to figure out what I could do with my damaged life. Careers floated about in little hermetic clouds: tactile sculpture, intellectual history, Marxist aesthetics, or the psychology and counseling I was reluctantly pursuing. All of it seemed contrived, false.
I now picked up the phone and put in a call to my uncle Sta«s in London.
"Yes, Andy, dear Andy," Sta«s said, "wouldn't it be wonderful if it worked! I'll call Mrs. Barnes straightaway. I'll call everyone mentioned in the article. How could I have missed it? I take the Observer every Sunday." Sta«s , one of the few remaining in my once-large family, settled in London after the war, and I saw him only sporadically. I was delighted with his immediate interest in the treatment. I had finally set things in motion.
I went over to my studio, to sit alone. I had built this little studio for Charlotte when we were married, the first carpentry I ever attempted, setting windows, hanging doors, cutting hefty lumber for her potter's wheel. She now occupies what used to be my painting space, a big L at the back of the house, while my more orderly equipment fits easily here, the drawers full of paper clips, staples, Magic Markers, files packed with folders and drafts, cubbyholes of index cards, tape recorders, and tapes. I feel like a hothouse plant with the shades drawn to prevent glare, spots of light illuminating the piles of my sprawling work. As I type, my words disappear into an inaccessible sea of paper, retrieved for me days or weeks later by readers who fill tape after tape with my awkward prose, awaiting revision. If I don't need the flow, the uninterrupted sense of a taped passage, I can still put my typescript under the zoom lens of my closed-circuit-TV system and read it with my own eyes slowly, letter by magnified letter, each 1 1Ú2 inches tall.
My walls are hung with enormous sheets of paper outlining projects with fat Magic Markers, an oversized calendar, and an American Foundation for the Blind poster with three-color graphics of white canes, braille dots, and other aids and appliances of the blind. Near me is a photographic blowup of a blind phantom sitting alone in the Odeon metro station, and next to it a reproduction of Matisse's The Painter's Family, which, but for memory, would be a fuzzy morsel of quilting. The three-pronged heavy-duty electric cords of my old power tools--my bench saw, jointer, sander, drills--have been replaced by tangles of thin wire emerging from wall sockets to maintain, through electricity, my contact with words.
In my old studio, now covered with clay dust, tubes of Rembrandt pigments once lay in neat rows, their labels printed exotically in four languages. A stupid-looking cross-legged Dutch boy with beret, upraised brush, and palette, sat on each tube, surrounded by a border of the gorgeous tint inside. The Rembrandts were the special colors--alizarin, manganese blue, laque de garance, viridian--used stingily, with deliberation; the rest of the jars, bottles, and tubes were a motley collection, gathered from all over Europe and America, caked with granules of pigment and oozing with separated linseed oil. The remains of a huge crate stood to one side of the easel. It had made several transatlantic crossings packed with stretched canvases, displaying on its surface a painted fragment of a Mayakovsky poem, read suspiciously by groups of customs agents upon each entry into the port of New York:
is much too small for me.
Stubbornly a body pushes out of me.
Your son is gloriously ill!
His heart is on fire,
Tell his sisters, Lyuda and Olya,
He has no nook to hide in.
The Observer article lay on the edge of my desk. It came to me by chance, and this made it even more significant. It was called "Can Bee Stings Cure Blindness?" and the Sunday it appeared, my London family, who would have spotted it, was dispersed or distracted. One was fasting at a health resort, two had gone to southern Europe to be packed in mud for the relief of arthritis, and Sta«s , it turned out, decided that particular Sunday to read the Times instead. My friend Mary in New York, looking through the foreign press, saw it and, with some trepidation, sent it to me. There was no mistaking it; the article spoke of my disease and of people whose lives had been similarly affected.
It was all there: the joyous testimonials of the cured and of the doctors who had been witness to the miracle. The author herself had obviously become a true believer. I put it under my Visualtek and read, letter by letter:
At 24, Joan Casey feared she was going to be blind for the rest of her life. She went to Moorfields Eye Hospital in London, where they confirmed that she was suffering an incurable form of blindness called retinitis pigmentosa. Later the same day, in May last year, Mrs. Casey, an Irish girl living in London, went to a semidetached house to begin a course of treatment from Mrs. Helga Barnes. The treatment consisted of being stung in the head by specially medicated bees.
A fortnight later Mrs. Casey said she could read news-print with her right eye, which had been totally blind for 12 years. After six weeks, she could thread a fine needle. The side and downward vision in the left eye returned. . . .
I kept the article near me all the time. I had made many photocopies, so that some were in my desk, some in my briefcase, and others were well placed in the community to gauge feelings of public reaction: surprise, hope, pity, or scorn.
As a rule I read so slowly with my Visualtek or my 10 times Diopter magnifiers that often I forgot the beginning of a sentence by the time I got to the end of it. But not this article. I knew it pretty much by heart. If a friend or colleague had not yet read it I jumped at the chance to hear it one more time.
Helga Barnes, 67, twice widowed, is a fair-haired bustling woman with a kindly face and shrewd eyes that tell you she's nobody's fool. She has a colourful turn of phrase, emphasized by a heavy Middle-European accent, undiminished by 40 years in England and two English husbands. . . .
. . . She talks freely about her life but what she won't discuss is the feeding secret of her bees. Several pharmaceutical firms have made her offers for the formula of her bee venom content. She is afraid people would be exploited. Although bee sting treatment may seem eccentric, she makes the point that it is as logical as a doctor's syringe and injection.
Her therapy, which she has been using for 48 years and the medical members of her family for a few generations before her, is a complicated and difficult one to implement. No one should imagine her results can be obtained through ordinary garden bees, whose stings can be highly dangerous. Mrs. Barnes's bees are specially bred and fed for individual ailments.
They are not a cure-all, and Mrs. Barnes will not take on anyone she knows she cannot help. . . .
Mrs. Barnes treated 12 blind patients last summer, charging nothing. She gave up hope of recognition from the medical profession long ago--"Tell them to go to hell" she said--and just wants to show that she believes she has succeeded where doctors have failed.
"Darling, it is a heaven. You have a blind person coming in and you put your arm around him and say, 'Don't worry, darling. You will be seeing.' It is the most wonderful thing on earth to give somebody back his sight. It is beautiful for me because I beat the best men in the land!"