Authors: Robert Kurson
At the airport, May hugged Fine good-bye.
“Thanks for being part of my adventure,” he said. “And thanks for being there for me.”
When he returned to Davis, May called Dr. Goodman. Since his first surgery nearly a year ago, he’d been concerned about the potential side effects of cyclosporine. Goodman had told him there might come a time when he could stop taking the medication. May asked Goodman if perhaps that time had come.
“Let me check with the nephrologist and get back to you,” Goodman said.
A day later the doctor called back and told May he could stop taking the cyclosporine.
“This is fantastic,” May told Jennifer after he hung up the phone. “I’m on a roll here.”
Despite his desire to practice full-time with his new approach to vision, May had a business to run. Sendero continued to struggle to convince government agencies to buy the product. May knew he had to shrink the GPS and its price, but he needed more development funds to do it. By now, the company had been turned down for several small grants. May got word of a big grant—one worth a million dollars—and began to write an application with the help of Burgess and some colleagues. He knew of no others available after that. Things were starting to get scary for Sendero.
May used the breaks between doing business to refine his new approach to vision. More and more, he was able to integrate vision with his other senses. More and more, he was able to draw on his bulging catalog of clues to decipher objects. He told his friends Bashin and Kuns that the best part was that he was doing it more automatically every day. The era of brutal heavy lifting, he told them, seemed nearly bygone.
One day, while walking into town for a haircut, May found himself instantly able to watch the passing visual scene without thinking at all about moving along—a thrilling example of integrating his senses.
“I’m good at this,” he thought. “I’m really good—”
WHOMP!
May’s body hurtled over a concrete bench, and his face smashed into the ground. The bench was the same color as the sidewalk. He never saw it coming.
“Oh, man, I’m bleeding pretty good,” he said aloud.
May hobbled into the hair salon, where the receptionist gasped at the sight of him. Blood flowed from his forehead and lip, down his cane and his leg, and into a pool on the floor. Someone led him to a sink, where he watched the red liquid swirl before disappearing down the drain. It was the first time he’d seen his own blood outside a test tube.
“This is a good reminder,” he told himself after his haircut. “I got cocky.”
A few days later, while on a flight from Washington, D.C., to Denver, May struck up a conversation with a young blond woman seated next to him. Eventually, he told her about his surgery. She asked if he could see the color of her eyes. He replied that he could only do so from up close. She leaned forward and put her forehead just an inch from his. Her eyelashes fluttered up and down so close he believed he could feel their breeze. May had never before looked closely into a stranger’s eyes. He was overwhelmed with emotion and could not speak, not even to tell her that her eyes were a singular blue. He could only sit there and keep looking.
Late that evening, he remained shaken from his encounter with the woman. Before he turned off the light next to his hotel bed, he opened his computer and typed, “This was a very intimate experience for me and I can’t fathom how sighted people go around seeing each other’s eyes without being flustered too. I understand a bit better now why so much is made of expressions in the eyes as it is talked about and written about passionately and poetically. I will certainly remember Ms. DC to Denver for introducing me to yet one more mystery of the sighted world.”
In mid-November, May went hiking with his college friend Ann Turpen, her husband, and their two daughters. He had never seen them. Before they set out for the woods he made careful mental notes about the family’s clothing—part of his program to catalog and remember. By the time they returned, several dozen people had gathered just outside the woods for a wedding. May quickly lost his companions in the throng. He scanned the crowd, looking for Ann and her family. Moments later, he’d picked out each of them, all from a good distance, and gathered them together.
“Wow, how’d you find us in that crowd?” Ann asked.
May did not know how he’d done it. He hadn’t looked for their colors. He hadn’t looked for their shapes. He hadn’t done anything. A smile inched across his face.
“I don’t know how I did it,” he said. “That’s one of the most incredible things that’s ever happened to me. I didn’t try to see. I just saw.”
May was due in San Francisco for a checkup with Dr. Goodman. He was eager to tell Goodman about his work with the scientists and about his mission to improve his vision. The men shook hands and May found the examining chair.
Goodman held open May’s eye and started to remark about the latest San Francisco 49ers game. He stopped in midsentence.
Looking through the biomicroscope, he could see that May’s transplant was swollen and that clumps of white blood cells on the back of the eye’s surface were attacking the transplant. May’s immune system was rejecting his cornea. He was going blind. And fast.
“Mike, we have a terribly severe rejection occurring,” he said. “I’ve seen lots of them, and it’s probably the worst I’ve ever encountered.”
May sat stunned. For several seconds he couldn’t process Good-man’s words. Rejection? For nine months he’d been coming to these checkups, and the one thing that was always beautiful was the health of the eye itself.
“Am I losing my vision?” May asked.
“It’s bad,” Goodman replied.
May’s heart pounded into his rib cage.
“Did it happen because we stopped the cyclosporine?” May asked.
“Very likely,” Goodman said. “This rejection came on like a storm.”
May could barely speak. How could this be? Nothing was blurry or painful. How could this be?
“What can we do about it?” May asked.
“I’m going to level with you,” Goodman said. “It’s very unlikely that we can do anything about it; it just looks too far gone. There are ways we can try to fight back, but they involve desperate measures—a flat-out assault—and they’re not pleasant. And even then it probably won’t work.”
“What kind of measures?” May asked.
Goodman sat on his stool and made his list. To fight this kind of rejection May would have to:
•
Ingest heavy doses of immunosuppressive drugs
•
Apply topical immunosuppressive drugs to his eye
•
Ingest oral steroids
•
Apply topical steroids to his eye
•
Receive a series of steroid injections directly into his eye
Each of the measures carried significant risk. May would have to ingest both cyclosporine and an additional immunosuppressant—all at higher doses than before, all with even higher risks for toxic and potentially deadly side effects. The oral steroids could cause bleeding ulcers that could hurt or even kill him. The steroid injections could blind him.
May took a deep breath.
“How long would I have to stay on the drugs?” he asked.
“We don’t know. It could be a long time.”
“Are you saying I would need injections directly into my eye—not near my eye, but in the eye itself?”
“Yes.”
“Is that painful?”
“Yes.”
“Is there a chance this rejection can heal on its own?”
“No. It’s one hundred percent certain that, if left alone, the cornea will continue to swell, the transplant will be rejected, and you’ll go back to being blind.”
May took another long breath.
“Do I have time to think this over, Dan? This is a lot to digest.”
“I’m afraid not,” Goodman said. “If we’re going to war, we’ve gotta go now.”
May sat motionless in the examining chair. He knew what vision was. He’d found a way when things were impossible. There was nothing left to answer. There was nothing left to see.
CHAPTER
SEVENTEEN
The glinting silver needle at the end of Goodman’s long syringe bore down on May’s eye, he could see its silver flashing, a metal too cold and hard to push into an eye and yet Goodman would not let him blink, he would not let go of May’s lids, and the needle grew nearer and larger and brighter, May had nowhere to go but into that needle, and the sharpness now was everywhere and then on top of him, metal did not belong in an eye, but it kept coming and he could not blink.
The needle pierced through the surface of his eye and then pushed deeper inside. May’s hands clenched the armrests on his chair as waves of pain tore into his head, down his neck, along his hands, feet, ears, tongue, hair, and breath. He wanted to scream but could not remember how. He needed to jump but dared not move because there was a needle inside his eye. For several seconds he could not breathe.
“It’s done,” Goodman said.
May couldn’t speak. He’d broken bones before, smashed his face. This was different. This pain was primitive. It was prehistoric.
Goodman gave May a minute to gather himself, then explained what was next. May had to ingest and apply a series of potent antirejection and immunosuppressive drugs. And he would have to return for more injections.
“How many more?” May managed to ask, dabbing at his tears and checking for blood.
“We don’t know yet. It could be three, five, maybe more. It depends on your progress.”
May could not imagine even one more of these offenses.
“When is the next one?” he asked.
“Tomorrow,” Goodman said.
“I’m leaving for Phoenix in a few hours,” May said. “I’ll need to be back tomorrow?”
“As early as possible,” Goodman replied.
“How long before we know if this is working?” May asked.
“About two weeks,” Goodman said. “I think we should know by then. But this is a long shot, Mike. Remember that.”
May’s assistant, Kim Burgess, drove him to the airport. He was to be the keynote speaker at a business conference that evening and was to make presentations the next day. She knew he was shaken and asked if he could still travel. He nodded but did not speak. On the way to the airport, May called Jennifer and told her the news—about the rejection, the risky medicines, the injections, and the bad prognosis.
For a time, the only sound in the car was the tinny rhythm of Jennifer’s voice coming through May’s cell phone. Burgess wondered if Jennifer had finally had enough.
Near the airport, May briefly spoke again.
“Thanks, Jen,” he said into his phone. “I knew you’d be with me on this.”
Flying to Phoenix, May did not bother integrating his vision or cataloging clues. Instead, he looked out the window and thought, “This is it. You’d better remember those fields down there. You’d better remember the shapes of those clouds and the blue of that sky. You might never see them again.”
For an hour he kept his eye pressed against the plastic window. And it hit him, as hard as the injection, that he’d better start seeing the big things in the world that he should have seen by now, the things he’d somehow presumed would always wait for this new eye of his. A doctor had given him vision—
vision—
and still it had never occurred to him to see the Galápagos Islands, the village in Ghana where he’d helped build a school, the Great Pyramid in Egypt, a topless beach, the Taj Mahal, a bald eagle, an elephant. He hadn’t even taken time to see an elephant.
May gave his presentation that night, then caught the first morning flight back to San Francisco. He could think of nothing but the gleam on Goodman’s needle as it would press through his eye, and the chromosomal-level pain he was due in an hour. He’d been willing to risk cancer in order to continue his odyssey with vision, but as the plane landed he wasn’t sure he was willing to take another of those injections. It sounded like someone else speaking when he gave the taxi driver Goodman’s address.
May sat in the examining chair, and this time he clutched the armrests in advance. Goodman pulled open his eyelids and at once May could see the glinting needle because this time he knew it would be there, and it hung before him growling in the light until Goodman began to push it toward his eye. May had just told Goodman that motion helped him see in depth and this needle was now in motion, and he watched it move into his eye until shards of pain flew across his nasal cavity, into the bone in the back of his head, and then made an S-shape of his spine. If anything, this injection was worse than the first.
Goodman rubbed May’s shoulder.
“Same time tomorrow,” he told May.
At home, May told Jennifer about his time in Goodman’s office but spared her the gory details. He said that it would be two weeks before Goodman could determine if the rejection had reversed, but that the odds were very poor. And he said it was his instinct to go see the major things in the world before he couldn’t see them anymore. A few minutes later, the kids rushed through the kitchen door. May hugged them, inspected the school projects stuffed into their backpacks, then sat them down at the table.
“I’m back early from Phoenix because Dr. Goodman found a problem with my transplant,” he said. “So now I’m getting these needles in my eye to try to fix things. There’s a good chance I’m going to lose my vision.”
“Needles?” Wyndham asked.
“Yep,” May replied.
“Right in your eyeball?” Carson asked.
“Yep, straight in there.”
“How much did it hurt?”
“Remember I told you I once had cavities filled without novocaine? It was worse than that.”
“Worse than your explosion?”
“Yes.”
“Was it gushing blood?”
“No, but believe me, I checked.”
“Did you cry?”
“Almost.”
“Was it worse than when I fell on a stick and got stitches in my arm?”
“I think so. This is an eye—the needle just goes right in.”
“Ewww!”
“Ugggh!”
“If you lose your vision,” Carson asked, “do you get your money back?”
May laughed so hard he nearly fell out of his chair. Then he looked at his boys for a very long time and told himself, “Remember this.”
May’s next injection, the following morning, was even more painful than the first two. Sitting on the ferry going home he felt as if he’d been beaten by a gang of thugs. He had to pull himself together. If he was going to see the big things in the world, he’d best start making travel plans now.
At home, Jennifer fixed him a sandwich and asked about his appointment. He described some of the details but was most interested in watching her move around the kitchen and seeing the bounce in her streaked blond hair as she whirled to throw things in the garbage can.
“Want to go to Peet’s?” she asked.
May had travel agents to call. His assistant was waiting with the phone numbers in his office.
“Sure,” he said. “Let’s go.”
That evening, Carson and Wyndham knocked on the door to May’s office. They could see he was busy but asked anyway: Would he take them to the Graduate, an area sports bar and restaurant?
“Do I need a coat?” he asked.
The boys didn’t mind that May walked a little more deliberately than usual on the way to the restaurant, or that he slowed down to look at the wild plants near Villanova and Sycamore, or that he stopped to inspect the house painted bright purple near the mall, or even that he took an extra minute to study the rainstorm of white bird droppings on the sidewalk outside the Graduate.
“Those are gross,” Carson said. “Come on, Dad.”
“Yeah, they are kind of gross,” May said. “Let’s go in.”
May gave the boys money for the air hockey table and went to the bar to order drinks. A tall young woman with long black hair, shiny earrings, and a low-cut top came to take his order.
“What can I get you?” she asked.
May knew exactly what he wanted—two root beers and a Guinness.
“I’m not sure yet,” he said. “What’s good?”
The woman began to recommend beers. May watched her gold necklace dance just above the V of her tanned neckline, her hands trace shapes on the menu, her hair fly across the room when she moved it from her eyes.
“I need a little more time,” he said. “Can you come back in a minute?”
When she returned, May watched her all over again.
In the games area, he challenged Wyndham to an air hockey match, nearly knocking their drinks to the ground as he lunged to make saves, sending the flat plastic disc on ricocheted pathways unknown in geometry books. He and the boys played pool (solids were easier to see than the stripes, but he loved all the colors regardless), watched NBA players dunk on the ten-foot television screen, and relaxed at a wooden table that had swirling patterns on top. May needed to go home to work, but everyone agreed to stay later when they discovered a new video game in the back of the room.
May wasn’t due back in Goodman’s office for another four days. He spent much of that time catching up on work. During one of his breaks, he walked to the big school playground behind his house, where he watched kids whirl around on the merry-go-round, traced his foot along the painted lines on the basketball court, and followed a man’s remote-control airplane as it carved shapes into the sky. Near home, he surveyed the giant field of grass before him and marveled at the idea that he could run headlong into that green for more than a minute and still not crash into anything. During another break, he threw a ball to Josh and watched his happy flopping, then took his dog to Peet’s to practice the girl-watching skills Jennifer had taught him long ago.
May took the ferry to his next eye appointment. In the office, Goodman again stood to the side (to avoid being kicked in the groin) and pushed the needle into May’s eye. This time the pain was a bit more reasonably horrific.
“Come back in a week,” Goodman said. “I think we’ll have our answer then.”
May’s eye hurt, but he forced it open as he and Josh walked to the Ferry Building. Near the dock, he watched seagulls swoop for dropped popcorn—perhaps the most elegant motion he’d seen—then followed an unusual pattern on the sidewalk he knew would lead to nowhere in particular. Nearby, he saw rows of miniature gray statues lined up along the curb, a single-file army of tiny men who looked ready for battle. He figured them to be parking meters. He walked over to inspect one of them more closely.
The meter felt the way it looked—heavy, metallic, cold, and smooth. Near the top he could see small blotches of irregular color, a darker gray than the rest of the meter. He ran his fingers along these spots; tiny jagged edges rubbed rough against his touch. He knew right away that he was seeing chipped paint. He stared longer at these torn shapes. They looked ugly to him, disorganized and broken, and they gave him a bad feeling. It was the same feeling of disgust he’d had when looking at the bird droppings outside the Graduate, at the fading paint on the eastern side of his house, at the pieces of drab yellow stuffing that coughed up from torn public transit seats. It was the same sad feeling he’d had looking at a homeless person. Soon, he might be blind again. He wouldn’t move his eye from the chipped paint at the top of the parking meter.
When May’s boat arrived, he turned to the dock and headed for the round tentlike structure he knew would guide him in. He stood on the pier, watching the buoys bobbing and making ripples in the water. When the ferry arrived, he studied how the men grappled it with a pole and secured it to the dock; he wanted to see the workers’ every action, and they seemed to move as smoothly as the gulls. He found his favorite window seat and got ready to look at everything.
A week remained before May’s big appointment with Dr. Goodman. He continued to ingest and apply the heavy doses of antirejection drugs. Jennifer prayed that he wouldn’t need any more injections. One evening, May thought she seemed distraught.
“What’s wrong, Jen?” he asked.
Tears began to run down her cheeks.
“I haven’t been grateful enough.”
“Grateful about what?”
“About your vision. I took it all so much for granted. I was just living my life as if it would be here forever.”
“Me, too,” May said. “Me, too.”
May dove back into his work, spending several days seeking new investors and checking on his grant proposal, for which there was still no word. During breaks he wrestled with his kids, dressed them for bed, and directed them to clean up the mess in their room, which, he warned them, he could still see until further notice. Sometimes, after the boys fell asleep, he lingered in their room to look at the strange Lego buildings they’d constructed and to study the up-and-down motion made by their blankets as they slept underneath.
When the weekend arrived and Jennifer asked if he’d like to attend Wyndham’s soccer practice, May grabbed his video camera and popped in a fresh tape. At the field, he followed the action on the camera’s large LED preview screen, recording Wyndham’s mad dashes to the ball and using the device’s powerful zoom feature to pull in details, like the confetti of mud that kicked up when Wyndham slid to make a steal. On Sunday morning, he showed the video to his family, standing inches from the television and pointing out the skill in his shaky cinematography. After that, the family walked to Fluffy’s for doughnuts.
Two days later he was due for his eye appointment. He arrived early and used the time to walk the streets and admire San Francisco. When his turn came, a nurse showed him to an examining room. Goodman entered a few minutes later.
“Let’s take a look,” Goodman said.
He held open May’s eyelids with his thumb and forefinger. The touch still reminded May of his boyhood ophthalmologist, Dr. Max Fine, and of the day he first met Goodman in this office, the day Goodman had told him about stem cells and said, “This could work.”
Goodman peered through the biomicroscope. He adjusted the machine and looked again. For several seconds May heard nothing but Goodman’s breathing. Then he heard him say just two words.