by Andrew Potok
Katie said she was lonely and depressed. She didn’t know what to do with her life. She was doing nothing. “I need help, goddamn it, Andy,” she sobbed. “I’ve got to find some goddamn thing to do. I just sit here in this goddamn trailer, and I’m scared to move.”
I didn’t know what to say. How should I know what anyone should do? “What would you like to do?”
“There’s nothing. I know you’re gonna say, ‘go to school’ or something like that. I can’t go to school, honey. I’m no goddamn good at that kind of stuff.”
So much for rehabilitation, the new skills, the confidence. “Are you alone, Katie?” I asked.
“I’ve got a husband. He’s never here. I see Ray sometimes, but that’s just sometimes, and he’s got a family.”
“How’s Ray?” I asked, buying time to try to figure out something constructive to suggest.
“He stopped boozing. He’s become a counselor to alcoholics. Christ, honey, I wish you could come down here and spend just one day with me. I know you’d figure something out.”
“I’d like to, Katie. But you’re in the country, and you know how hard it is to get rides. . . .”
“I’m just going to sit in this goddamn chair and die,” she said.
“I’ll try to come,” I said.
“Do you have my phone number?”
“Yes,” I said.
“Take it down again,” she insisted. “And my address. Got your brailler handy?”
“I can still see big letters,” I said.
“I forgot my goddamn braille,” she told me. “You can type letters to me. I’ll find someone to read them aloud.”
“I will, Katie. I love you, Katie.”
Sometimes I think that my having come to accept blindness must have been the slowest “rehabilitation” on record. “His won’t be easy or fast,” Miss Hennessy warned Charlotte a long time ago. But I’ve had opportunities Katie hadn’t dreamt of. If she were a nice middle-class lady, she could have been “actualized,” moved along the Monopoly board of “human potential.” She could have hopped on to the women’s movement, she could have qualified for some small sinecure. I wondered about her powerful friends, about well-connected Frankie and Lieutenant O’Reilly, whom she had sometimes accompanied on what they called “panty raids”—finding illicit couples in the act to settle divorces or just to get something on someone. I thought that perhaps, after St. Paul’s, she might have been transformed into a tweedy court stenographer, or a legendary whiskey-voiced moll. But for whatever reason, she had been discarded, useless and alone.
One way or another, most everyone in my St. Paul’s group survived. Only Rosemary and lovely young Margie didn’t. Rosemary, weakened by her diabetes, had a lethal heart attack, while Margie, with her teased blond locks, her long shapely body and puffed eyes, underwent more eye surgery. I visited her in the hospital, where from under her bandaged face, she tried to smile. Though unimproved, she did recover. Rumor then reached me that she had met a man and fallen in love. A year or so later, her kidneys failed, and alone again, just thirty, she died in a Boston hospital.
I once thought that I was the most exotically maimed and deprived person imaginable. But with astonishing rapidity, others have caught up and surpassed me. Mine is no longer the most unique, complex, or insurmountable problem the world has ever known. Once I wouldn’t have agreed to share the rotten-luck award with left-brained musicians or right-brained lawyers, not with flaccid movie heroes or bedridden athletes. But in my unexpected life, I’m no longer alone. My sorrows, my losses, and my incongruities tend now to vanish in the general sorrow and disappointment. Cut off from what I once thought to be my birthright, I simply join the poets without a book, architects without a building, businessmen without funds, suffering from bad luck or a lack of brilliance or energy or vision, their dreams exploded or changed by time. Except that I am an author with a book, “one of our authors,” Ellyn had said. Other people’s loves and work have gone awry, their health fragile, their children stoned or lazy or dumb. They, we, are being cut down by accidents, by cancers, by immobilizing sadness.
I am still, though less so, in the “no-man’s-land” between blindness and sight, still quite indistinguishable from the sighted in appearance. Strangers don’t know and friends often forget that I am ever closer to being totally blind.
The other day, Charlotte and I walked out the kitchen door to look at the sun setting through a break in the clouds. It shone at a long oblique angle, transforming one side of the gray-boarded horse barn to warm glowing orange, and setting the trees ablaze with color against the purple of the mountains, under the ashen sky. I remembered it better than I saw it, but the pleasure it gave me was real. Not too long ago, this would have thrown me into self-pitying despair. I would have cursed the colors and everyone who could see them.
I know that inside my eyes there are cells that are migrating or extinct, particles of useless biological garbage swimming around, disappearing, lost. There are, I imagine, dangling shreds and hopeless short circuits, but somehow, through this mess, I manage to interpret the world, skewed but close enough. I know I will lose all my sight and soon. As much as I want to hang on to every vestige, I know I can’t. But I also know something that should have been clear to me from the beginning: the only thing that could replace the creative activity in the center of my life would be another creative activity. The exhilaration and satisfaction I once found in the mix of paint and canvas, hand and eye—in ordinary daylight—I am beginning to find in words.
As I sat in my little studio—called my office now—working on the last chapter of this book, I heard an unrecognizable car pull into the driveway, and from across the road, I heard the kitchen door open and slam closed. I liked working with the knowledge that visitors were intercepted, phone calls answered, everything kept at bay, by someone else; it was like falling asleep hearing the comforting sounds of conversation float up the stairs. A moment later though, footsteps crunched the gravel, passed the car, and continued in my direction. Then a knock on my door. I moved my chair away from the typewriter, my eyes bleary from the hundred watts focused there, and as I stood, I saw the silhouette of a small person with baggy pants, pinched at the waist by a dungaree jacket, all of it topped with a large visored cap.
“Yes?” I said, annoyed at the intrusion.
“Andy Potok farm,” he stated, consulting his notebook. “Twelve acres of corn planted.”
“Right,” I said.
“Well, Gagnon’s my name. Used to be French. I check random farms for Soil Conservation.”
He stood under a huge piece of paper on which I had outlined my chapter with Magic Markers. LAST CHAPTER, it said, and under that, “Back Home.” I could see that Gagnon’s cap had a message over its visor: perhaps INTERNATIONAL HARVESTER or HOOD’S MILK.
“I’ll show you where the corn is, and you can go have a look,” I said.
“Can’t do it alone,” he said. “It’s got to be measured. That’s a two-man job.”
“Look, Mr. Gagnon, I’m in the middle of a chapter.” He shifted his weight from one foot to the other. His expression didn’t seem to change. “Also, I’m nearly blind.” He didn’t move. We faced each other in a long, uncomfortable silence. “How long will it take?” I asked.
“Not long,” he said. “Maybe an hour.”
I turned off the lights, the typewriter, the gas heater. Outside, I felt my way around his pickup truck and climbed into the high front seat. We drove up the road, parking at a break in the stone fence. We both slid down to the ground, and he hunted around in back for his measuring equipment, pulling out a long length of chain. As we walked to the corner of the tall yellowing corn, he explained how we would go about doing our job. My blindness didn’t seem to register at all.
“You stand here,” he said, “and hold your end of the chain. I’ll walk along the edge of the corn with my end, and when I’ve walked off the whole length I’ll plant one of these red flags in the ground.” He showe
d me a handful of little red plastic banners stapled around a foot-long rigid wire. “Then we walk again and stop when you come to the flag.” I figured my chances were slim to see the red at all, but I now felt game and anxious to try.
We began, and as the chain tightened, I knew he was planting his flag. “Here it is, Andy,” he yelled. “Walk right toward it.” I followed the rut made by the plow, but as I approached the area where the flag should have been, I saw nothing but the muddy autumn colors, the fallen cornstalks, the rusty maple leaves blown by September winds and collected in the furrow. The red was lost inside all that. We had walked too far now, and I knew I had missed it. Finally, Gagnon stopped and shouted: “You walked by it, Andy. Turn around and you’ll walk smack into it. Hey, you just stepped on it!” I stopped and looked around my feet. The little spot of red would simply not come into view. Then, with a quickening of my heart, I saw it.
“I’ve got it,” I shouted. “I’ve got it!” I picked up his flag and stood, proud and still, until he paced off another chain’s length, then I walked on to find the next banner. I grabbed leaf by leaf until I found it, and we seemed to be setting a kind of rhythm, jerky and slow: place, hunt, find. . . . I stepped on the flags a good dozen times or passed them by without noticing, while Gagnon, puzzled, then patient, finally understanding, yelled directions and guided me as if he were at Cape Kennedy and I were Venus-bound, congratulating my successes and forgiving my failures.
“Hey, way to go, Andy,” he yelled. “You’re doing real good now.”
At one point he waited for me so he could take back the dozen or so flags I had collected. “Boy,” he said, “am I going to have trouble converting this surveyor’s chain into rods. Four rods to a chain, they tell me.” He took out a little booklet from his back pocket, put the flags down, and holding it at arm’s length, a finger pointing carefully at his place, he read. “Says here twenty-five links to a rod, one hundred links to a chain, ten square chains to an acre. Jesus, I’ll be up half the night.”
We walked on. The last side of the L-shaped field now lay in the shadow of the pine and tamarack. The rhythm of our movement depended more on chance now, the small banners sometimes flashing miraculously on my retina, sometimes refusing to appear. But we made it. We had done more than measure the field; we had conquered it.
Gagnon had to continue up my road to the town of Orange to do one more farm before the light gave out. “What do you mean blind?” he said from behind the steering wheel. “Why, you see almost as good as me.”
I walked slowly back to the house. Charlotte was probably out of her studio by now, chopping vegetables on the butcher block, a glass of sherry by her side. She might have put a Schubert piano sonata on the record player, which I would interrupt with an account of Gagnon and the cornfield.
I remembered that Sarah was coming for dinner from Burlington. We hadn’t seen her in a month, and I missed her. She would have to arrive very soon, I thought, because it was getting dark.
The last time Sarah and I talked, we talked about children.
“When you’re ready,” I had suggested, “why not adopt children?”
“You mean because of the RP?” she had said. “For Christ’s sake, Papa, how can you say that? You’re nearly blind and you’re doing damn well.”
It was true. I liked my life now. Vermont was good to write in, better when broken up with frequent trips to New York.
As I approached the house, I smelled the wood smoke from the chimney. It was my job, but Charlotte had made a fire inside. The kitchen lights were already on. I stopped and heard a gentle breeze sway the mountain ash out front. But I was wrong about the music. Charlotte hadn’t chosen a piano sonata, but the Schubert quintet with two cellos, my favorite.
AFTERWORD
JUST THE OTHER DAY, several friends e-mailed and called to make sure I had read an article in the national press about the beginnings of yet another cure for retinitis pigmentosa. Though this one seems to have a more rational premise than the Bee Lady’s, the testimonial language was reminiscent of those bad old days, and I read it with a shudder. “Thanks to an artificial silicon retina, the 6 patients, many of whom were virtually blind, are rediscovering simple gifts of the sighted, the flight of a flock of geese, the pattern on a well-worn tablecloth, the face of a loved one.” The patients are part of a pilot study of a solar-powered microchip created by a private company. “None can tell there is an implant in their eye,” said the company’s ophthalmologist CEO. “What they can tell is that they can see better.”
Oh God, I say, fearful of yet another claim that will drive some folks crazy as well as instill dangerous hopefulness. Still, this one might be the real one, or at least its beginnings, its claims coming from our new god, technology, and the old one, the profit motive.
The CEO said that one patient who has had the implant for nine months saw his wife’s face for the first time in years; a man who previously could discern only hand motions within a distance of four to five feet could now see cars half a block away.
It does seem probable that these are hopeful signs. Something might indeed come from this technology, or from transplanting layers of pigment epithelium or rods and cones, or from stem cell miracles. I think of Sarah: Ah, if only in her lifetime . . . She thinks of me. “You have practically no sight left, Papa,” she says, “so you’d be the perfect guinea pig.”
I wonder why I’m not more excited by these claims. Is it because going for cures, whether rational or not, takes so much time and energy? Is it only that I feel too old for cures? This is probably part of it. But more than anything is the fact that my life is full and rich. I have so many other things to do now: two new books in progress, a series of talks to give, my immersion in efforts to educate people about disability. None of this, of course, is to deny how much I would thrill to see my wife’s face, my children’s and grandchildren’s, how much I would love to paint once more, using whatever shreds of vision a microchip might restore, to experience the subtlety of color, to see a baseball game. Ah, I think, I wouldn’t even need complete restoration. I would know how to use just a few more rods and cones to paint, to decipher, to absorb whole landscapes . . . I realize I am dreaming again.
Helga Barnes was just one false cure among the many offered people with retinitis pigmentosa over the years. The seductions came from everywhere and they come still: from clinics, hospitals, jungles, religious conversions, in claims for nutrition, good hygiene, and good thinking. Desperate people will always be prey to anyone who promises to alleviate the intolerable. The Helga Barnes experience cured me of ever looking for another cure— unless, of course, it is the unquestionable one, the real thing. So why not apple blossoms or placental injections or microchips? As always, we want to believe in cures, not just for blindness but for neuroses, bad memories, life itself. Technology makes it more and more difficult to accept that every wrong cannot be righted, the answers don’t exist to all our questions.
During a recent radio interview relating to my new book, A Matter of Dignity, I was shocked when the congenitally blind interviewer confided that he had two children, both of them sighted, and wished that at least one had been born blind like him. I can understand the many deaf people who want to preserve their deaf culture and refuse to accept the imperfect restoration of their hearing through cochlear implants. But wishing to have blind children? That one was hard to grasp. Then I realized that the difference between those who were born blind and those of us who once had vision is vast. We do share the state of not seeing, but just as I could not truly understand the interviewer’s regrets, I do not think he could ever understand the fierce longing for eyesight that still haunts me, sending me even now, after all these years, into moments of envy, rage, and despair.
Since our Helga Barnes fiasco, my daughter Sarah has lost a lot of vision and now uses a white cane, though still more as a symbol than from the need to sweep the area in front of her as she walks. When we are together, I marvel at the grace and lack of sel
f-consciousness with which she whips out her cane, lays it down if she wants to use her camera to take a picture of her daughters, picks it up again as people stare in disbelief and, I think, admiration. No one looks more beautiful with a white cane than my lovely, graceful Sarah, who is beginning to plan eventual training with a guide dog. Her daughters have not been tested for retinitis pigmentosa, not only because they show no signs of an early night blindness but because the time has not yet come when knowing that part of their future would factor into their career plans.
My marriage to Charlotte ended some time ago. She had been the voice of reason in this book, trying unsuccessfully to take me away from the idiocy of an insane woman and her bees. Living with someone who was grieving for the constant deterioration of eyesight, she maintained her dignity, and did not put up with the drama that I sometimes created around my losses. Still, marriage involves a lot more than a single issue, no matter how difficult that single issue can be, and this marriage came to an end.
I am joyfully remarried and no longer live on those beautiful hundred acres which were for many years my place of safety and delight. I live in town now, which is more conducive to my need for independence. We live with Tobias, my third guide dog, following Dash and Topper. The dogs’ presence in my life has not only identified me unquestionably as a blind person but has given me the freedom to travel almost anywhere. These fabulous animals have been the agents of profound and exhilarating changes, of a true liberation.
Helga Barnes’s real name was Julia Owen. It was changed unnecessarily on the advice of the publisher’s lawyers, for I could have called her Joan of Arc and she, being litigious as well as nuts, could still have tried to sue me under English law. She was, after all, the only lunatic in London inflicting bee-sting pain on people going through their own hells. For all I know, she might still be kicking around in her late nineties in some London suburb or Arabian kingdom. Several years ago I heard a BBC interview with Julia Owen, whose anger and paranoia were even wilder and more ludicrous than I had chronicled in the book. The interviewer said that she now owned a number of suburban houses, and that one of the preconditions for treatment was her insistence that her patients reside in one of these high-rent properties. She has remained a vivid presence in my memory, and through friends and family in England I tried over the years to have further news of her, but she seems to have disappeared.
