Six months after they started dating, May and Roxanne became engaged. Their future looked bright, if a bit uncertain. In 1983, Roxanne announced her intention to find a job teaching school in Peru. May loved the spirit of the adventure even if he didn’t quite understand its timing. He and Roxanne’s mother planned wedding details while she was away. Weeks later, she called and told May that she was having an affair and that she no longer thought they should marry.
May could not remember a pain so profound. He flew to the Galápagos Islands to meet Roxanne and try to rescue the relationship, to no avail. He couldn’t concentrate at work. His second Seeing Eye dog had just died from a hemorrhage at age three. He turned in his resignation at ESL, packed his belongings, and headed to Kirkwood, where Salviolo had built a house that he said was right for broken hearts.
Salviolo’s place, the highest in Kirkwood, was snowed in often, a perfect opportunity to open a bottle of wine, fire up the woodstove, and talk about lost love. At night, the men trekked to a lakeside resort, where May played guitar and Salviolo tended bar, and May passed on the chance to meet women he would have charmed before. By day, they began a foundation for teaching skiing to the blind, and trained for the upcoming World Winter Games in Innsbruck, Austria, where they would defend their gold medals. By the time the Games arrived, May and Salviolo were the heavy favorites.
It took just moments in Innsbruck to realize that the world had caught up to them. Just two years before, they had introduced the daring guide-in-front technique, which had trounced the competition. Now every team was using it. May stumbled in one of the runs, and he and Salviolo settled for three bronze medals. But it was sweeter in ways for the trail they’d blazed for the winners.
At an American team meeting, officials made an exciting announcement: the amputees had been invited to ski in a demonstration run at the Winter Olympics in Sarajevo, Yugoslavia, now just days away. The room erupted in cheers. When things quieted, Salviolo stood.
“What does that mean for the blind skiers?” he asked.
“There’s no room for the blind,” an official said. “You guys take up two beds and there’s just no space. Be happy. We were lucky to get the amputees invited.”
May turned toward Salviolo.
“We’re going,” he said.
“I’m already there,” Salviolo replied.
May made no secret of their plan. When asked how they intended to get to Sarajevo, May’s answer was “Somehow.” When asked what they intended to do there, he said, “We don’t know.” Their attitude irked team officials, who assured them that such acting out would change nothing. “That’s fine,” May said. “We’re just going as tourists to cheer on our buddies.”
The amputees, a rough and rowdy crowd that included Vietnam vets and ex–standout athletes, counted May and Salviolo among their friends. The two skiers had witnessed one amputee sawing off his prosthetic leg after a bitter loss, had stood guard while another shimmied up a flagpole to steal a flag, and had drunk beer from another’s hollowed-out leg. The amputees had no problem with the idea of the duo following them to the Olympics.
May and Salviolo rented a car and headed to Sarajevo, where they found a tiny hotel room, a miracle. As the Games began, May put in a call to a KCBS radio news director he knew and proposed using his tape recorder to get interviews and file reports for affiliates. The man arranged press credentials for him and Salviolo. They were in.
The men went to work, clutching their microphones, rushing to interview gold medalists, and filing their stories from the press room; some of their reports were broadcast across America. On the day the amputees were to race in their demonstration, May and Salviolo strapped on their skis and went to the top of Mount Jahorina to do interviews. After the last amputee had made his run, Salviolo took May’s arm.
“Mike,” he said, “I think we can take our shot. Let’s get in the starting gate.”
The idea was crazy: this was a foreign country, armed guards stood everywhere, and their own organization had forbidden their participation. May turned on his tape recorder and stuffed it in Salviolo’s backpack.
“Let’s do it,” he said.
The men wedged into the starting gate. A moment later they were flying down Mount Jahorina, the tips of their skis trademark close, the wind and sun streaking past faster than May had ever known, Salviolo’s calls of “hard left…easy right…go-go-go!” a music he heard without hearing as the world emptied of obstacles to give free rein to those whose hearts told them to go. Near the bottom, a Yugoslavian guard stepped onto the finish line and drew his gun. Salviolo yelled, “Get out of the way!” People screamed in foreign languages. May knew there was trouble. He had no idea what lay ahead. He could veer off now and still say he’d skied in the Olympics. He tucked in for maximum speed, braced himself for everything, and streaked across the finish line.
The throngs who had gathered mobbed the skiers. Reporters and photographers pushed close for interviews. May had become the first blind Olympic skier. Inside him, the kid who had signed up to be a crossing guard held on to the victory ski poles and wouldn’t let go.
CHAPTER FIVE
Carson and Wyndham rushed their dad when he returned from his San Francisco appointment with Dr. Goodman. They knew nothing of the B-scan results he’d received or that he had the chance, in three months, to see them. They just plowed into his hips like defensive linemen and began diagramming their day’s adventures, each pleading, “No, no, Dad, listen to this!” when the other made headway in his story. In May’s office, a stack of “While you were out” messages awaited.
Late that evening, after the kids had been tucked in and May had returned his business calls, he finally made his way to bed. Jennifer had waited hours for news of his B-scan results.
He brushed his teeth.
He went back to his office to charge his cell phone.
He searched for the audiobook he had misplaced.
Finally, he climbed into bed.
“So?” Jennifer asked.
“So, the B-scan was normal,” May said. “It turns out I’m an excellent candidate for the surgery.”
For a moment, the ceiling fan’s murmur was the only sound in the room.
“Oh, my,” Jennifer said. “Oh, wow. That’s really, you know, kind of amazing.”
“It is,” May said.
“It never crossed my mind that it was real.”
“Mine, either.”
May and Jennifer continued to lie still on their backs.
“There are risks,” May said.
“Okay.”
“A lot of risks.”
“Okay. Tell me about them.”
“Well, to start with, there’s just a fifty-fifty chance this thing will even work. I could go in for both surgeries, go through all the anesthetic and hospital stuff—you know how I feel about that—take all the time to recover and heal, and still it’s just a coin flip.
“And even if it does work—even if I get vision—it could fail at any time, I could lose it without any warning, and it’s not like I’d be out of the woods after a year or two. It could happen anytime for the rest of my life.
“Then there’s the vision itself. Dr. Goodman can’t say how much I’ll get. It could be a little, it could be a lot. It’s possible I could drive. He’s had good results with other patients, but they all had significant vision at some point in their lives. He says it’s just too hard to tell on a guy like me who’s been blind nearly forever. So that’s three risks. And that’s not all. Are you ready for more?”
Jennifer said she was ready.
“If the surgery fails, it could cost my light perception. I don’t know exactly why or how it happens, but it sounded like there were a bunch of ways it could. And once it’s gone, it’s gone.”
Jennifer’s heart began to pound when she heard about the light perception. At least light perception allowed him to sense whether it was day or night outside, and to detect a brightly lit doorway in an unfamiliar dark
room. She believed light perception to be fundamental to her husband’s feeling for the world.
“And then there’s this, Jen: in order to make the surgeries work I would have to take some pretty serious drugs. Dr. Goodman gave me a list of potential side effects that went on and on, and believe me, they aren’t pretty. One of them is cancer.”
Jennifer’s head still was spinning from the previous risks. She could barely process the word “cancer.”
“It sounds so much different now that it’s real,” she said. “The words sound different.”
“They do.”
The couple lay for a moment in silence.
“How do you feel about it?” Jennifer asked.
“I’m not sure,” May replied. “I’ve got to let it simmer. I still don’t think I need it, Jen. I still don’t think it would change my life. But I did sign up for the surgery.”
“Oh! Okay. Well…okay…that’s kind of amazing…,” she said.
“I wanted to book a time. It takes several weeks to get on the list. But I can back out anytime. It doesn’t commit me to anything. It just means I’m on the schedule.”
“Do you have a date?”
“November twenty-second for the first surgery, about eight weeks from today.”
“Eight weeks until you drive to Kirkwood and I finally get to be the one to sit back and watch the mountains and the sunsets roll past? I can’t wait that long,” she joked.
“Eight weeks seems like nothing,” May said.
“It’s like it will be here tomorrow,” Jennifer said.
After that, only the ceiling fan made noise in the Mays’ bedroom.
The silence lasted another six hours. May awoke to a business that clung to his breast like an infant and spit problems nonstop. All the while, he could hear the clock ticking toward surgery. Before he knew it he was just four weeks away.
Jennifer remained careful to give her husband room to roam the idea of new vision, but he was not the kind to take meditative walks or to ruminate endlessly. Often when he desired perspectives on important issues, he found them best in conversation with the important people in his life, a select group of family and friends he referred to as his “personal board of directors.” These nine or ten people were his sounding boards. They did not feel compelled to proffer opinions, nor did he require them—it was usually enough that they were smart and loved him and gave him whatever chance he needed to hear how his ideas echoed when voiced aloud.
As October wound down, May found time to talk to every member of his board. As always, they discussed family, business, vacations, movies, football, everything. This time, at the end of the conversations, he also mentioned new vision. He reported the results of the B-scan, told them he had signed up for the surgery, and explained the risks. He was always careful to say that he could cancel at any time.
The board’s reaction was nearly uniform. They acknowledged the gravity of the risks and downplayed none of them. They added “amen” to his reminder that his life was already full and rich without vision. They assured him that no matter what he decided they would support him. And then they told him—every one of them—that they believed in him.
During quiet moments at home, May briefed Jennifer about these conversations. She had been careful to give him space for his thinking, so these reports became headlines in her curiosity. He told her that talking to his board gave shape to the risks associated with pursuing new vision, and that the conversations sometimes raised questions that seemed drawn from a philosophy class.
“What kinds of questions?” she asked.
“Well, for example, it’s one thing to say clinically that the extent of vision restoration is unknown. It’s another to ask just how much vision makes it worth the risk. Is it two percent? Fifty percent? Ninety percent? That’s an interesting question.”
“Very interesting.”
“Here’s another: Is it better to have vision and then lose it, or is it better never to have tasted it at all?”
“You can probably ask that about a lot of things,” Jennifer said.
“And, of course, is it worth…all the medical risks, those nasty drug risks, just for the chance to see?”
Jennifer didn’t rush to answer any of the questions.
“Is there a general consensus among the board?” she asked.
“They’re like you,” May said. “They don’t give me answers or try to convince me. Mostly they listen. They say they believe in me.”
“Thanksgiving’s coming soon,” Jennifer said.
“I know,” May said. “And I’m so busy it feels like it will be here tomorrow. These risks are serious, Jennifer. There are a lot of reasons not to do this.”
As Thanksgiving week drew nearer, May had a different kind of conversation with the newest member of his personal board of directors, forty-four-year-old Bryan Bashin, the director of the Society for the Blind in Sacramento. Bashin had lost his vision to Stevens-Johnson syndrome, a rare disease in which the body, often following an allergic reaction, mounts a massive immune response by wallpapering itself in blisters. If the blisters go to the surface of the eye, as in Bashin’s case, the patient can go blind. But here was the kicker for Bashin: Stevens-Johnson syndrome was one of the very few causes of blindness—along with chemical burn—that could be treated by stem cell transplant surgery. In effect, he and May were in the same boat.
The men had met a few years before, when word drifted into Bashin’s office about a blind entrepreneur named May who was involved in cutting-edge technology and who seemed as much explorer as businessman. The idea of such a person called to Bashin—to him, the pool of cool blind guys seemed perpetually shallow. When he later read that May intended to demonstrate a prototype of his company’s portable GPS system in Anaheim, he proposed to May a one-mile race to Disneyland between cane and GPS users. In Anaheim, the sun melted May’s unit’s wires; he used dry ice and hot glue to Frankenstein the gizmo back to life. Bashin recognized parts of himself in May’s instinct. “The guy is gonzo,” he told himself. “I’ve gotta get to know him.”
After May moved to nearby Davis, Bashin invited him to join his agency’s official board of directors. The friendship grew fast from there. The men shared many interests, from science to Indian food to the outdoors to wine, women, and song. But more than that, they were kindred thinkers. They shared a perspective on how the blind seemed groomed by the custodial establishment to lower their expectations, to become objects instead of actors, nouns instead of verbs. Neither could abide the deferring, postponing, waiting, dreaming, and sitting apart that seemed endemic to the lives of so many who had lost their vision. They agreed that the highest good for a person, blind or sighted, was in pushing forward in one’s chosen realm, not just because it led to a fuller life but because it seemed the way to know oneself. These instincts underlined Bashin’s life as clearly as they did May’s, though he had arrived at himself in a much different way than had May.
Bashin had grown up in a San Fernando Valley that was shedding its wilderness for a new suburban skin. The smells of newly sawed lumber and hot tar became the flavors of his youth. It was the perfect place for the curious to explore, and Bashin was always curious.
He had inherited his interest in things, and especially in science, from his father, an agile intellect and self-taught engineer who worked for Space Technology Labs (now TRW) designing solar-powered systems for satellites. Often, his dad brought home space-age materials like honeycomb aluminum substrates—“some of the lightest stuff in the world,” he told Bryan—and magical formulas like dry ice for kitchen-table experiments. The boy’s playthings were surplus castoffs from the Los Angeles space industry: meters and transformers and motors that seemed capable of miracles if assembled in the right way. To Bashin, science seemed mystical for its invitation to find that right way.
One day, after a bike ride with friends when he was twelve, Bashin asked his father to scratch his back—it felt like he had mosquito bites. The next day he
woke up with welts and a fever. This was the beginning of Stevens-Johnson syndrome. By Saturday morning he had lapsed into a coma. Blisters covered more than 90 percent of his body. Doctors fought for his life. He went home a month later. As his skin problems resolved it became obvious that he had some vision issues, though no one knew at the time that this was the boy’s entrée into blindness.
While his friends entered their teen years trying to understand their new bodies and urges, Bashin set out to deny his failing eyes. He felt conspicuous just for being thirteen, but now that he struggled to see it felt like everyone in the world could see him. He still had some useful vision, however, a godsend to a kid determined to pass for sighted.
His vision slowly worsened. In eighth grade, he was assigned to a special support homeroom along with twenty-five other visually impaired students. Eighth graders possess magnificently tuned geek detectors, and Bashin’s began flashing code red. His classmates wore Coke-bottle glasses and moved like they were trying to pin the tail on the donkey. He cataloged the ways he was different from them, then set out to underscore these differences by refusing to learn braille or use a white cane. What he needed was to find the really cool blind guys, the paradigms for a better way. He sensed they were out there but had no idea where to locate them.
Through high school, Bashin continued to deny the loss of his vision. He thought constantly about vision restoration and researched the latest advances. The idea that there might be scientific hope set him on a road of research that would last for years.
When Bashin enrolled at the University of California–Berkeley, he took up photography, the most visual endeavor he could find, and used the field’s powerful lenses to reach back to a world that continued to slip away from him. On campus, he met a blind grad student who had toured Europe solo over the summer, a feat Bashin couldn’t fathom. The guy was accomplished, but more than that he had “it,” and in 1973 “it” meant finding girls, scoring pot, and hanging with the general culture. Bashin didn’t come close to thinking of himself as blind, but he promised not to forget this person.
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