In one case, he had removed a blinding cataract from the eye of a woman who had been told since losing vision as a teenager that her case was hopeless. It had been a highly complex surgery but it worked—a day later she could see almost perfectly. Her reaction startled Goodman. She had been happy and content as a blind person. Now sighted, she became anxious and depressed. She told him that she had spent her adult life on welfare and had never worked, married, or ventured far from home—a small existence to which she had become comfortably accustomed. Now, however, government officials told her that she no longer qualified for disability, and they expected her to get a job. Society wanted her to function normally. It was, she told Goodman, too much to handle.
In another case, Goodman performed Lasik surgery on a working mother. In all respects she seemed a happy and normal person. The procedure corrected her mild nearsightedness to perfect vision. During a checkup three months later, she flew into a rage, lunged to within inches of Goodman’s face, and screamed, “You’ve ruined my life! My marriage has failed, my husband has left me, my kids won’t talk to me, and I just lost my job! And it’s all because of you!” After Goodman calmed her, she explained that she had been depressed before the surgery and believed that if she got rid of her glasses her husband would find her beautiful, her children would believe her a better mother, and her boss would think her a good worker. Goodman told her, “You have a problem I can’t help you with. I’m sorry I didn’t realize it earlier.” The woman ran out, yelling at everyone in the waiting room.
Such cases were rare; Goodman had done thousands of procedures, from routine to complex, and in virtually every case the patient had been grateful for his efforts and the results. But they reminded him to watch carefully, especially in the kind of rare situation in which he now found himself with May—a discussion about giving vision to a man who had been blind nearly for life. So far, May looked as calm and centered as he had in February when the men had met.
“How does it work?” May asked.
Goodman explained the process directly and in layman’s terms. He would perform two surgeries. In the first he would transplant donor stem cells onto the surface of May’s eye. He would wait perhaps four months while the stem cells replicated and produced healthy surface cells. Then he would transplant a donor cornea. The first surgery would produce no vision. The second surgery could.
May asked how many stem cell transplants Goodman had performed. Goodman told him that this would be his seventh. He said that all of them had been successful to one extent or another.
“How many of those patients had been blind for life?” May asked.
“None,” Goodman replied.
The doctor looked for May’s reaction. May seemed to smile at the sound of the word “none.”
“There are risks associated with doing this,” Goodman said. “It’s important that you understand them very clearly.”
“Okay,” May said. “Let’s hear them.”
Goodman leaned forward and began to list these risks.
The chances of success are just fifty-fifty.
There was only a 50 percent chance that the new cornea would stay clear and not reject during the first year.
The stem cells and the cornea could reject at any time in May’s life.
Even if the transplant worked, May could lose his vision with no warning and at any time, and this would be true for the rest of his life. He might see for a month, a year, or forever—no one could predict how long, and he could never presume that his sight would be permanent.
The extent of sight restoration is unknown.
Cases of vision restoration after a lifetime of blindness were so rare—Goodman knew of none—that it was impossible to estimate how well May would see.
A failed surgery could cost May his light perception.
Trauma to the eye from surgery, infection, or even a temporary pressure spike were among the myriad potential causes that could snuff out the slight but valuable light perception May used daily.
The potential side effects of cyclosporine are serious—and include cancer.
To prevent his body from rejecting the stem cells and cornea, May would need to ingest cyclosporine, a highly potent immunosuppressive drug. The list of potential side effects included liver failure, kidney failure, heightened blood pressure, raised cholesterol, tremors, vomiting, hair loss, appetite loss, and a decreased ability to fight infections. But the most serious among them was the increased risk of cancer. One of Goodman’s own patients had died recently from an immunosuppressive-related cancer. May might have to take the drugs for six months, a year, or maybe for life, depending on the extent to which his body might try to reject the new tissue. Even a six-month program could invoke the side effects. And it was possible to be stricken years after ending the cyclosporine treatment.
Goodman studied May’s response. He had remained calm during the discussion and had even made small jokes between risks. His follow-up questions were brief but on point. He seemed to Goodman well-grounded and realistic.
May asked the doctor about the required hospital stay and the anesthetics. He still had painful boyhood memories of forced hospital confinements during his failed corneal transplants, and lingering sicknesses from the ether that had been used to put him to sleep. Goodman assured him that anesthesia had come a long way since the early 1960s, and that he probably wouldn’t require overnight hospitalization. He would, however, need to travel frequently to San Francisco for follow-up care.
“I know that this is a very personal decision,” Goodman said. “You should take all the time you need.”
“What’s the next step?” May asked.
“The next step is to book a spot on the calendar for the stem cell transplant. It usually takes about six weeks to get in.”
May’s mind was awash in the risks Goodman had described. But it seemed a good idea to get on the list. If he decided to pursue the surgery he would have the spot; if he decided against it he could simply cancel. Booking a slot obligated him to nothing.
“When do you have time?” May asked.
“Let’s check with the front desk,” Goodman said.
The calendar opened up around mid-November. May looked for a time that would require the least intrusion into his workdays. He settled on November 22, 1999, the Monday before Thanksgiving, a quiet work week.
“Thanks, Dan,” May said, extending his hand. “This has really been interesting. A lot to think about.”
May gathered his things, took hold of Josh’s harness, and walked back into the San Francisco day. Soon he was on the ferry and making his way home. An hour ago he had gone for a simple test result. Now the world had shifted. He wanted to give himself time to digest what he’d heard, but the doctor’s phrases—50 percent chance; without warning; extent unknown; risk of cancer—leapt in and out of his thinking. He had much to consider. He had much to sort out. He had to ask himself whether he could face the risk of dying in exchange for the chance to see.
CHAPTER FOUR
No guitar player was ever more thankful for his ability to pick and strum than was May in the summer of 1971. The state of California had invited him, along with several other blind college-bound students, to the oceanside campus of the University of California–Santa Cruz for a seven-week college training program. The idea was to prepare them for the realities of university life. One of those realities, May figured, was women. He made sure his guitar had fresh strings.
The program was as laid-back and hippie-vibed as Santa Cruz itself. The students took literature and psych courses, then hung out at the beach and talked about peace. When instructors advised them to hire sighted students to read their classroom assignments aloud, May found one who wore patchouli oil and liked to recite psychology texts on the grass outside his dorm. He drifted off in her scent in a way Freud would have understood.
In high school, women had been rumors to May. At Santa Cruz, they were as near as his guitar case. One of the program’s students,
a quiet woman named Nancy, swooned to his phrasing of Crosby, Stills and Nash songs. He knew she was attractive—he could tell by the shift in direction of men’s voices when she entered a room, and by the easy way she seemed unsurprised when sighted men paid attention to her. He knew she was wonderfully built when he touched the back of her upper arm, a sure indicator of fitness to the attuned blind man. He aimed to sit beside her on the beach in the hope that her long, silky hair would brush against his hand.
One evening, a few students gathered in May’s dorm room to sing and play guitar. One by one the others left, until only he and Nancy remained. He knew it was the time to make his move, but did he have any moves? At the movies once during high school, he’d clumsily reached for a girl’s hand and had been rebuffed—how was he supposed to start reaching beyond that now? May sensed that Nancy was equally inexperienced. He put his arm around her and onto her hair, and pulled close to kiss her. She moved into his touch. The feeling of connection and softness was overwhelming, and there was no turning back. But how was he supposed to proceed? The Barbie dolls that had been his teachers were smoothed over in the places he needed to go. He had never enjoyed the gift of learning that stag films conferred upon his friends. He had believed things would be obvious when this moment came, but as he and Nancy fumbled with each other’s clothes and made noises that seemed to sound right, the helping arms of the gods remained folded. May searched for important parts he’d learned about from Playboy and pals, asking himself, “Is this it? Is that it? How will I know when I get there?” After the night wound down and May had gotten there, he told himself, “This is a new and wonderful world.”
The couple dated through the summer and promised to keep in touch even as they attended colleges hours apart. May registered at UC-Davis—the only blind student in a body of sixteen thousand. The school, however, did not offer Santa Cruz–style courses in stories and feelings. Its administrators wanted their engineering majors learning calculus and physics and chemistry.
May struggled from the start. The technical nature of his curriculum—including its heavy reliance on graphics—began to drown him. It did not help that he spent five hours a day training as a member of the collegiate wrestling team. He barely squeaked by. After a time he found new tutors and discovered calculus texts written in braille. He hung on.
Though May learned to get by in classes, he still stumbled in his quest for romance. Traveling in engineering circles did not situate him among the university’s coed elite, and when he did speak to women his patter was patchwork. At dorm-sponsored dances, he forced himself to approach females, but the blaring music and wall-to-wall crowds frequently sent him off course. Often, when aiming for a beautiful woman his friends had located, he found himself asking a football player or even a wall to dance. One guy asked him, “Are you stoned?” because his eyes looked different. “He wouldn’t dance with me,” May joked to his friends.
School got tougher sophomore year. May’s classes were more advanced, and the wrestling team swallowed more of his time. At Christmas, nearly gaunt from training, he announced to his brother Patrick that he was going to wrestle one of the Donaldson twins at an AAU tournament.
“Not the Donaldson twins!” Patrick exclaimed. “They’re famous! They’re animals! They pin their opponents in, like, five seconds. Whichever one it is, he’ll kill you!”
May wrestled anyway. He refused to be pinned—that was everything to him. But the twin beat him up badly. After the match, May knew he was done wrestling. He hadn’t enjoyed a Thanksgiving meal in years because of his dieting regimen, and he had no time to study. The decision came as a great relief. By the new year he’d put some meat on his bones and stood a fighting chance in the classroom.
Liberated, May bounced through campus, guiltlessly hitting favorite haunts like A. J. Bump’s, Vic’s Ice Cream, and especially the Giant Hamburger, where he ordered burgers with everything and bought entire fruit pies when they were on sale. His appetite to go places sometimes delivered him into the no-man’s-lands of Davis. All it took was a bad shortcut across a field or the wrong tong in a forked pathway and he could be lost for hours. Sometimes he would arrive at places he hadn’t expected, cross paths with interesting people, stumble upon some feature of the landscape or trinket shop or ball field that he’d never dreamed was there. It was this stumbling that gave May a sense of the world’s potential—it was all so big and fascinating if one was willing to get lost. When friends asked if he wasn’t scared to lose his way, he confessed that sometimes he was, but he felt it was worth it, that some of the best things seemed to happen when you didn’t know for sure where you’d end up. When they asked how it felt to finally find his way, he told them that getting unlost felt like a kind of seeing.
By junior year May was carrying a B-plus average, but something still didn’t feel right about electrical engineering. When he dipped his toe into an international relations seminar he was hooked. Engineering was formulaic and defined—circuits go together in a certain order—but there was mystery in cultures. He went to the registrar’s office and changed his major to political science. He was going somewhere else.
In the summer of 1974, between his junior and senior years in college, May applied for a job as a counselor at Enchanted Hills, the camp he had adored as a boy. For years, the place had employed only sighted field staff after a blind counselor had lost track of a camper. May petitioned the director and made his case. The camp remembered his spirit and made an exception.
He connected with his campers. He told them that years before, he hadn’t been allowed to pursue his camp dream—to hike by trail miles away from Enchanted Hills, then return as the crow flies, through water and rugged terrain and who knows what strange creatures.
“Let’s do that first,” he said.
They skirted poison oak and rattlesnakes and walked into branches. They fell. It was tough going but they made it. May loved the breathiness in the campers’ voices when they threw off their backpacks and said, “That was cool.”
Near the end of the summer, May had a discussion with some older campers. They admired him and asked how he managed to seem so confident when so much of a blind person’s life could be scary. He wanted to give a pithy answer, one worthy of these teenagers about to go out in the world, but he struggled—he had never analyzed the parts that defined him. So he told the campers about his life, his mom, how he never felt right unless he tried, and as he spoke he realized that all his stories said the same things:
• Have adventures
• Speak to your curiosity
• Be willing to fall down or to get lost
• There’s always a way
“I think if you can do those things you will find your way in the world,” May told them. “I think if you can remember to do those things you will always be okay.”
In his senior year, May made the move of college men’s dreams—into a coed dorm. Women streamed in and out of the five-story building at all hours. He could hardly sleep for the thought of Coco, the junior redhead who slept next door. One of the residents, a freshman named Marcy, became his girlfriend. He still cared for Nancy, his first love from Santa Cruz, but distance had faded their relationship.
Like Nancy and some women he’d known in between, Marcy was a looker. That was important to May, partly because the idea of beautiful women thrilled him, partly because he didn’t want anyone to think he didn’t know better. Many women found May handsome. He was six foot two and 160 pounds, square-jawed and with a lively smile, and in top physical condition. He conceived of his own looks modestly—he knew he wasn’t the football player type, but no one seemed to run in the other direction, either.
Around Christmas, May starting dating a woman named Cathy. That should have ended his relationship with Marcy, but by now he had noticed in himself a reluctance to be without a backup girlfriend. He tried never to lie to these women, preferring secrecy instead, but he knew it was dishonest all the same, and he did not like that part of
himself.
As graduation drew near May turned his thoughts to the future. Law school seemed the logical choice. There was honor and prestige in the profession, it allowed creative thinking, and it paid well. In 1975, the blind were lucky to have jobs, and those who did often ran vending stands or operated telephone switchboards. Law sounded right to him.
Law school, however, would have to wait. When May discovered that a student could earn academic credit by studying abroad, his only question was, “Which country do I pick?” Many students chose places like England or France, but that seemed too easy to him. Ghana, in West Africa, did not. A professor had primed his interest in the area, and he’d had brushes with the country, as when he’d admired a friend’s Ashanti stool and when he met a Ghanaian gray parrot who could sing songs from television commercials. The sponsoring agency just needed to find a family for his six-month stay.
No family wanted him. And they certainly did not want his new dog guide, a German shepherd named Totie. The Ghanaian military used dogs as attack animals; villagers did not know them as pets. The agency told May his trip would probably be canceled because of their inability to find him a family. But the group leader urged him to go anyway, saying they would figure it out when they got there.
May and Totie became instant aliens in Ghana. Taxis refused to stop for them. Restaurants demanded that May sit outside. The staging dormitory for visiting students wouldn’t allow him in. May developed a system for hiding his dog from taxi drivers. When they stopped the car, he and Totie jumped in and refused to get out. The drivers would leap from their taxis and yell and protest, sometimes for fifteen minutes, but ultimately they had no choice but to get back in and drive.
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