Ordinary Daylight

by Andrew Potok

  I wanted to apologize, to make amends for all the hoopla, the unfulfilled promises. “Not at all,” I said.

  “What about those improvements you described?” George asked.

  “They’re hard to explain. I could have sworn they were real at the time.”

  “I know what you mean,” Sheldon said. “I felt the same way with the vitamins. After the second or third shot, coming back on the train from New York, my wife thought I was nuts. I walked from car to car. I helped people take their luggage down from the racks. But it all vanished as we pulled into Boston.”

  “I know what you mean, too,” Moira said. She had joined the group after I left. “I was in a program that experimented with a drug—dimethyl sulfoxide—a couple of years ago. I not only saw better, but they even measured the improvement.”

  “How’s that? What do you mean?”

  “I went from twenty/two hundred to twenty/one hundred. I saw better at night, and my field improved.”

  I thought of my self-styled charts and the tests I had devised at Eton Rise. “You were scientifically tested?” I asked.

  “Yes. At a university hospital. It was like that for a couple of months, then it started getting bad again. . . .”

  “What a horror,” I said. “Mine was different. One day I thought I saw better, the next day it was gone.”

  “It was such a tease,” Moira said shakily. “Those couple of good months weren’t worth it.”

  I remembered how energizing the improvements were and the special ache of the despair that followed. “I brought an article from a medical journal,” she said, pulling it out of her bag and handing it to Freda. “Just the underlined parts, okay?”

  “Terrible Xerox,” Freda said.

  “I thought the great sighted majority could read anything,” Kevin said.

  “Sorry to disappoint you, wise guy,” Freda said. “Here we go, folks. It says, quote, Fifty patients with retinal deterioration were treated, dot, dot, dot, let’s see, and the subjective evidence gathered was encouraging. This subjective evidence consisted of improved or stabilized visual acuity, improved or stabilized visual fields, and improved night vision, unquote. Okay, dot, dot, dot, quote, Of the fifty patients treated, twenty-two improved in visual acuity, nine improved in visual field, and five improved in dark adaptation. Two patients have continued to regress, and the rest have had no measurable or personally noted changes in vision.”

  “There’s a footnote on that page that’s the meat of it, I think,” Moira said.

  “Okay, I’ve got it,” Freda said, pulling the Xerox in and out of focus, straining to see it. “It is well to . . . I mean, quote, It is well to remember at this point that similar early evidence of efficacy was also found in the use of vitamin A for retinitis pigmentosa, but it was ultimately found to be ineffective after a three-year double-blind study. The desperate hopefulness of these patients apparently manifested itself as early subjective improvement under a new treatment. I can’t read the rest. It comes right off the page.”

  “He says in the article,” Moira added, “that hopefulness was somehow responsible for the improvements, that it affected an individual’s immune responses and that those immune responses could have halted the downward course of RP.”

  None of us knew much about immune responses, so we assigned George the task of looking it up, until we realized that this wasn’t a regular meeting and we’d probably not meet as a group again. “I move we make this group go on forever,” George said. “What’s the word for it in the trade? Open-ended?”

  “Total dependence,” Kevin said.

  Freda started pouring coffee and slicing cake. “All I know about immune responses,” Frank said, “is that they’re real physiological reactions, mobilized antibodies or something like that.”

  “With Helga’s patients,” I said, gulping down a piece of cake, “some simply lied about improvement, either on their own or forced to by her. Did I tell you that Sarah and I were asked to write testimonial letters? Some of her people probably never had RP to begin with. There’s one guy, though, who sounds like a case of sustained immune responses.”

  “There’s a bunch of cures now, more all the time,” Kevin said. “People are flocking to Russia, to Switzerland. . . .”

  “You wouldn’t believe what’s going on in England,” I said. “Communities are raising huge amounts of money to send people to Russia or Switzerland. They’re being warned by the British Medical Council, even some minister or other, but they’re going in droves. Like me. No one could have stopped me.”

  “Sure,” Sheldon said, “all someone has to do is offer a little hope.”

  “That’s precisely what the Swiss doctor says. Something like: ‘With a disease that offers no treatment, I at least offer hope.’ ”

  “Hope?” Craig snarled.

  “If I’ve learned anything at all,” I said, “it’s that hope is pernicious. I’ve gotten to hate hope. The other day I saw this cripple on TV, an ex-athlete I think, who said that hope was keeping him alive. I wanted to shake him. . . .”

  “Why, if it makes him happy?” Sheldon said.

  “Because with what he’s got, he’s never getting out of his wheelchair. . . .”

  “So he believes in team spirit and coaches and God. So do I. It keeps me sane,” Kevin said.

  “So what are you saying, Andy?” Freda asked. “That it’s better to give up?”

  “Don’t call it ‘giving up,’ call it ‘accepting.’ Jesus, listen to me. Maybe I really did learn something. A model blind man.” I stood up and bowed. No one saw me except Freda, who applauded. “None of us is going to miss out on a cure, if there is one,” I said. “But there isn’t one. We should go about our business, learning to live with what we’ve got.”

  It turned out that we were all adjusting anyway. Sheldon did housework at home while his wife got her first full-time job. To their surprise, the change suited them both. Craig, who had counseled college students while painstakingly hiding his impairment, was about to take a job at St. Paul’s to counsel people like himself. George was thinking of graduate work and agreed to learn mobility and braille as a first step. Moira, a mathematician, could go on, with minor adjustments. Kevin had to learn to forgive his wife for playing tennis. “You can still be the capitalist pig,” Craig had told him. Frank and Jenny had just been married and had to map out their future, decide about having children. We all had to help our families adjust to us, help them help us to stop wanting our old selves back.

  Toward the end of the year, George called me to say that he was going to the Soviet Union to try the RNA treatment. “I guess we all have to work on closing our private circles. Naturally I hope that this works, but if it doesn’t, I hope I’ll finally feel that I can immerse myself in something other than my eyes.”

  Before going back to Vermont to immerse myself in writing, I went over to the Berman-Gund Laboratory, now one of several centers studying retinal degenerations. Dr. Berson had written to me in England, assuring me of his support and best wishes. “I would have loved to detect some improvement in Sarah,” he now said. “We looked very hard. Probably we should have a look at you too, just to be sure.”

  “I’ve been away for six months indulging my whims,” I said. “What marvelous things have happened here in all that time?”

  “Our kind of work moves slowly,” he said. “We were on to a protein whose absence affected the retinas of cats, for example. It took a year to do all the investigating. It’ll take a lot more time for the data to be published, corroborated, discussed. And in the end, it will probably just eliminate one more possibility.”

  The ways of American science are exacting, even tedious. Everything has number values, and whatever passes the first few hundred steps goes up the ladder through orders, families, genuses, and species, from rats to cats, through dogs and monkeys, until, with everyone exhausted, it is gingerly tried on erect vertebrates with opposable thumbs. I guess that’s the way it should be and I should
be grateful for the care scientists take, but to me, anxious for results, the process seems to crawl at the speed of evolution.

  Dr. Berson was collecting and collating reams of electrophysiological material, getting an ever clearer picture of the many RP types. Dr. Szamier peered daily into his huge electron microscope, to see the deteriorated rods and cones of Royal College of Surgeons rats. Dr. Edwards grew cultures of photoreceptors and pigment epithelium cells in stainless dishes, while Dr. Schmidt made intricate biochemical analyses of everything that crawled. They were the best in their fields; they were patient and understanding.

  The lab didn’t look particularly busy, but then nothing but time made cells grow in culture; no one was required to crank a handle to spin a centrifuge. The scientists did go to work daily; they took breaks for lunch, went to conferences given by their colleagues on related subjects, and gave conferences of their own. They spent weekends in Woods Hole or the Berkshires, read novels, scoured the countryside for antiques, worried about their cars and teenage children. In the laboratory, I’m sure they sometimes daydreamed, discussed the Bruins or the Red Sox, stared out the windows into the murky Boston sky. I would have preferred an eighteen-hour workday for them, a foreman perhaps to make sure that none of them dozed off.

  One particularly hopeful area they all spoke about was the establishment of an eye bank through which they were beginning to receive intact young human retinas of RP people who had died prematurely of other causes. When I was there, they were examining the retinas of a patient who had been seen by Dr. Berson just before death, thus giving him the opportunity to compare visual function with visual structure. To Berson’s surprise, vision seems to remain after much of the structure of the rods has broken down. Perhaps there are little-used subsidiary visual systems, perhaps some people merely learn to use what remains, others not. It’s this unknown region, though, which, I suppose, varies from patient to patient and which provides the possibility of fluctuation in vision. Before the immunological system is even provoked, the potential for differentness exists, and it depends, perhaps, on mood and constitution, perhaps on will. At St. Paul’s, we had witnessed a dramatic example of the great difference between visual equipment and actual sight. A fellow trainee, named Steve, turned out to be hysterically blind, psychologically unable to see. He had passed all the required ophthalmological examinations and was found to be as legally blind as the rest of us. We certainly experienced him as one of us, and only later did he recover his ability to use his sight.

  As I left Berman-Gund, I felt glad that it existed, but I felt that the cure for RP might as easily come from there as anywhere—from the labs of people working on the retina or not from labs at all. It would be nice, I thought, if the Foundation’s money and those good and able scientists were to be instrumental in facilitating what is known in the trade as a breakthrough.

  News of Helga has reached me periodically. I’ve seen copies of letters she wrote to other patients. I’ve had a couple of articles about her read to me, and I have a transcript of a BBC television program recently aired. Nothing much has changed, only the cast of characters. The letters say pretty much the same as they always have: Helga cures, no one appreciates, and to teach people a lesson, the fees skyrocket. She ends one such letter, to the British RP Society, swearing that the next time they make “clever comments” about her, she will rain down on them, from a “crane carrier,” thousands of leaflets endorsed by doctors, specialists, and patients.

  In a Daily Express article, another doctor, a stand-in for Dr. Ryder, announced his discovery of the miracle-working “Bee Lady” and was photographed being stung by her bees. THE BEE VENOM HEALER PREPARES AT LAST TO PASS ON HER PAINFUL SECRET, the headline stated. Like Ryder, Dr. Gregory Robak is a homeopath. “If I—an orthodox doctor—had been told that bee venom could cure arthritis, asthma and blindness, I would have laughed,” he said. “But I have been checking over cases treated with bees, and what I have seen is fantastic.” He too had seen patients resume driving again. “They no longer trip over objects,” he said, “and are able to take up with their normal lives.” As to the bees’ effect on his very own myopia, he said that “before treatment I could not see clearly beyond my hand without glasses. Now I can see twice as far, twice as sharply.”

  “For years I have hated the medical profession,” Helga confesses, “because they all want my secret without giving credit. Gregory is different. He has an open mind, and I think he is honest. I am going to show Gregory everything from breeding bees to putting them on all parts of the body for treatment. At the end of two years I will give him my feeding secret.” Gregory, of course, has since gone the way of all the rest, back to the tedious practice of medicine.

  On a BBC news program Helga claimed 100 percent success while dissatisfied patients claimed that she was a fraud. The fees had gone up to three thousand pounds, in some cases to a reported twelve thousand!

  “It says in your literature that you’re invariably successful,” the interviewer stated.

  “Always!” Helga cried. “Not invariably; always!”

  I heard once from Dr. Ryder, who wrote that he had lost track of Helga and that the bee treatment, to which he had lent his name and thus attracted people like me, turned out to be worthless.

  Mrs. Dorset wrote several times to report on the boys, whose improvements remained questionable. She hadn’t lost hope and saw Helga from time to time with the boys for booster stings. Neither Tom nor Dirkson ever answered my letters, while Nulty, who did, graphically expressed his hatred of her. Jorge Salomon, the “Lima chappie,” corresponded with me for a while. He and his wife were thinking of having a baby, and he asked me to send him genetic information about RP, which I did. The last I heard from him, he doubted if he’d been helped, but he held back any blame fearing that his brother and sister, in treatment with Helga, might suffer if his criticism reached her. James McDole continued to see better, and I wondered if his improvement survived the BBC broadcast.

  Vera left England shortly after I did. For a couple of months in London, she and I had played delightful games with each other’s sexuality, using those aspects of it, whether real or imagined, that we wanted to, needed to, explore. I had longed to break out of the constraints that blindness had put on my senses, while she endowed that blindness with a kind of spirituality that gave free rein to her wildest impulses. In my first couple of months back home, as Charlotte and I stalked each other, unable to touch or commiserate or take pleasure in each other’s existence, I wrote Vera at Cadogan Gardens suggesting that we run off together, leaving no trace. Luckily, the letter was improperly addressed and returned unopened. A year later, a friend of Vera’s, passing through New York with a repertory theater company, phoned me to say that Vera was in one of the Micronesian islands, where she was living with a paraplegic aborigine who had no feeling below the waist except at the very tip of his penis. A few months later, I received a postcard from Vera, from the Falkland Islands.

  It took a long time to finally take real pleasure in Charlotte’s work and her success. Her pieces had evolved from earthy organic forms to a light, ironic commentary on throwaway objects. In thin white porcelain, she had transformed paper cups and plates, milk cartons, and Chinese-food take-out containers into whimsical poetry. In the past few years, I had acted hurt, pitiable, when she asked me to criticize the shapes she was making, but now, with considerably less sight, I volunteered my services. By holding a piece for a long time, feeling it with fingers or lips, carrying it from one kind of light to another, by placing it on different surfaces, filling it with things, I could make useful suggestions about proportion, scale, the thickness and taper of the walls of cups and bowls. Much to the surprise of both of us, I could still draw well enough to illustrate a point.

  We began drawing together, setting up still lifes or posing for each other, each of us embarrassed to show the smudges and scribbles, the spatial non sequiturs. I found that I could worry a detail to death, shading folds, remembe
ring ears, imagining the designs of my wood stove; but all my accumulated fragments remained discrete, connected only by hope or a strong imagination. During one of these drawing sessions, Ellyn called from New York.

  “Are you sitting?” she asked.

  “No.”

  “Well, sit down,” she said, and waited. “We want to offer you a contract for your book. Everybody here wants it as much as I do.”

  Shortly after I had finished the St. Paul’s chapter of this book, I was awakened at one-thirty in the morning by the telephone. I ran downstairs, fearing the worst.

  “Guess who?” a voice said.

  The house was cold and I was bare-assed and annoyed. “I have no idea. It’s late.”

  “Aw, c’mon, guess,” she coaxed.

  “Tell me, for Christ’s sake. I’m freezing. I want to go back to bed.”

  “Bed. Mmm,” she said. “It’s Kathleen.”

  “Kathleen who?” I said. I knew no other Kathleens, but I couldn’t believe it.

  “Aw, c’mon, honey, how many Kathleens do you know?” I was trembling. “Kathleen Dougherty. D’you forget me already? D’you forget St. Paul’s?”

  “But why . . . I mean how come now . . . ?”

  “Oh, I don’t know. I’ve been sitting alone, drinking, thinking of you. I often do. I didn’t have your number. I mean I’ve got it somewhere, but how am I supposed to find it? I called Vermont information, told her I was blind as a bat, and had her look you up in every goddamn town in the state.”

  “It’s just such a coincidence,” I said.

  “Why?” she asked. “Were you going to call me?”

  “It’s not that,” I said. “I’ve just been writing—”

  “I knew you were going to write a book. I just knew it. Am I in it?”

  “As a matter of fact you are, Katie. But listen, don’t worry. No one will know it’s you. I’ll change your name. . . .”

  “No, don’t do that,” she said quickly, soberly. “Use my name. It’s okay, really.”