Crashing Through
Page 28
“I feel like it,” he said. “I’m proud.”
So long as May could integrate vision with his other senses, he could see better. But that still left a world of objects beyond his reach, things he could detect only through his eyes. How was he to identify the strange wonders that moved past during the Picnic Day parade in Davis? How was he to distinguish a flight attendant from any other passenger on an airplane? How was he to tell what was for sale inside those plastic blister packs at Costco?
Again, May put his mind to the matter. Again, he asked, “What am I good at?”
His first answers were of little use. He was good at skiing, but that wouldn’t help. He was good at playing guitar, but that wouldn’t help either. He was good at a lot of things, none of which could help him see things he couldn’t reach by his other senses.
One day, while stewing as he waited yet again for Jennifer to find her car keys, he had a new thought.
“I’m good at being organized. And I’ve got a good memory.”
Organization and memory had been the linchpins of his ability to construct the mental maps he had used so effectively as a blind person. Why, he wondered, couldn’t he use organization and memory to build maps of the things he saw?
He figured it this way: When he encountered important objects, he would memorize some identifying clue or trait that would help him recognize that object in the future. Dr. Fine had told him that his brain was broken for vision, but no one could tell him he couldn’t catalog and remember—he was better at that than anyone he knew. The project would be a massive one—there were countless objects to know in the world—but if he stuck to those that mattered to him, he might better learn to recognize the world beyond his grasp.
Armed with his plan, May fired up his GPS-Talk and walked to a shopping area near his home. Inside a hardware store, he began to handle things and catalog clues. He knew that flashlights were often built with on-off buttons in the middle of their handles, but he’d never noticed until now that those buttons were often rectangular and a different color from the flashlight itself. He filed that information under “flashlights” in his brain. In the tools section he inspected a collection of saws. He had used saws before but had never looked at one since gaining vision. He studied the patterns made by the jagged teeth, the wide rectangles of the blades, and the tool’s silver color, then cataloged that information under “saws.”
Near the checkout counter, he handled a small and heavy blister pack. He asked the clerk what was inside. The clerk told him that they were batteries. May studied them. Most of the batteries were the same color—black on the bottom two-thirds, a reddish-brown on the top third.
“Some batteries are black on the bottom and a rusty orange on the top,” he told himself. “Remember that, too.”
May had written his first page of clues. His next goal was to expand it to the size of the Sears catalog. When Jennifer remarked about an object that seemed interesting or important to him, he asked, “How did you know it was that thing?” or “What’s the best clue?” When his assistant, Kim Burgess, drove him to San Francisco for his appointments, he asked her to show him the important trucks on the road, then memorized the shapes and colors of their logos. At Wyndham’s soccer games, he recorded the clothing habits of the other parents. Before long, his kids didn’t need to be asked, “How’d you know that?”—when they found something cool they just told him the clues.
He didn’t hesitate to enlist strangers in his mission. On a flight to a business conference, he realized he still couldn’t tell a flight attendant from ordinary passengers. So he asked the man seated next to him for help.
“How do you know which people are the flight attendants?”
“Excuse me?”
“I have low vision, so I’m trying to figure out who’s who. What are the clues?”
The man thought it over for a bit.
“Well, let’s see. The flight attendants sit facing toward us when the plane takes off. They’re the only ones standing during the seat belt instructions. And they all dress the same.”
“That’s great,” May said. “Those are excellent clues. Thank you.”
During the safety announcement, May searched for the standing people. He found one a few rows ahead and memorized her clothes. During takeoff, he looked to the front and found a person seated facing toward him. She was wearing the same clothes as the one who’d been standing. Later in the flight, he rose from his seat, walked down the aisle, and found someone dressed in those clothes.
“What time are we landing in Chicago?” he asked.
“We’re due a few minutes early, at six forty-four P.M.,” she replied.
Walking back to his seat, May had to keep himself from shouting, “Yes!”
He spent the next weeks memorizing clues and building his catalog. One day, Jennifer invited him on a trip to Costco. Inside the store, he roamed the aisles and looked for clues. Many of the items still appeared melded together, and most were generically packaged. In the electronics section, he saw a large rectangular box—just the shape that could hold anything. This box, however, looked different to him—black on the bottom two-thirds, copper on top.
“Those are batteries!” he thought.
He picked up the box. The objects inside were heavy and made a rattling sound.
He picked up another box and began to walk away.
“I’m buying batteries today,” he said.
Standing in the checkout line, May told Jennifer about his score.
“I did it in a second, Jen. It was amazing. That would have taken me twenty or thirty seconds before. I didn’t have to think about it at all—I kind of just saw it.”
“Mike, that’s wonderful.”
“And the best part is that it was natural, it just came to me. It wasn’t work. It was just there.”
“Why do you think it took so long to figure out this new way to see?” Jennifer asked.
“I know why,” May said, placing his batteries on the checkout counter. “I was waiting around for my vision to improve. I was waiting for all the parts that didn’t work to catch up with the parts that did. It made perfect sense at the time. But I’m not going to wait anymore.”
May flew to San Diego to see Dr. Fine. She hoped to write a paper on his case and had asked him to undergo more tests. In her lab, he told her about his efforts to find other ways to see, and the thrill he felt when it worked.
“I’m so happy for you, Mike,” she said. “You really are a pioneer.”
“Well, I feel like we were a team in this,” he said. “You did me a great kindness by being straight with me. I needed that in order to move on.”
In between tests, May told Fine that he’d tried to improve his reading and depth perception, too, but decided after much consideration that he already had better ways than vision to do those things.
“Braille and my screen readers will always be much faster for reading,” he said. “And my old cane and dog are much more adept at depth.”
“What about faces?” Fine asked.
“That’s what I wanted to talk to you about,” May said.
That night, Fine’s was the only car in the science building parking lot.
“I’m in the clue business now,” May said. “I know I’ll never understand faces as a whole or automatically. But what clues can I find in faces, with my abilities, that will tell me something about them?”
Fine sat May in a chair just a foot from a computer monitor. For the next several hours, she sat beside him and showed him every photograph of every face she had, pointing out the clues to gender: the difference between plucked and unplucked eyebrows, how shades of lipstick differ from natural colors of lips, how a woman’s upper lip curves more dramatically, the revealing angles of cheekbones. At the end, she tested him. He scored 90 percent. They both knew that May would never get close enough for long enough to discern most of these clues in the real world. Neither of them seemed to mind. It was enough to know that they were the
re. Later, she worked with him on identifying common objects, helping him extract new kinds of clues.
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.