Two weeks later, the phone rang in May’s office. From the kitchen, Jennifer could hear him say, “Are you sure? Are you sure?” Then May walked into the room.
“You’re not going to believe this,” he told Jennifer. “We got the grant. We got the grant. It’s for $2.25 million. We’re going to make it.”
Jennifer hugged her husband harder than she had ever hugged him before. This wasn’t just a grant for Sendero, she told him. It was a grant for the laser turntable and the bun warmers and the talking computers. It was a grant, she said, for him. May called friends and family and organized a night of celebration. When his boys returned from school, he told them the good news—that this grant had been their last chance and that they’d made it.
“When do we get to shave your beard?” the boys asked.
“What did you say?” he asked.
“When do we get to shave your beard?”
Then May remembered. Months ago, when sending in the proposal, he’d told his sons that the grant was so important that if Sendero won it he would let them shave off his beard. His boys had never mentioned the offer after that. But now they stood sober and ready to collect.
“I’ve had my beard since I came back from Ghana,” May said. “Mommy’s never seen me without a beard. It’s part of me. I’ve had it for more than twenty-five years.”
“Can I do it first?” Carson asked.
“No, I want to do it first!” Wyndham said.
“This has been a huge day,” May replied. “Let’s talk about it tomorrow.”
The next morning, May walked into his sons’ bedroom holding a three-head electric razor.
“Let’s do it, guys,” he said.
In the bathroom, May knelt on the floor and gave the razor to Carson.
“I don’t even know how to shave off a beard,” May said. “I think you have to do it slowly. Don’t mow like it’s the front lawn.”
Carson made gentle and rounded strokes on May’s cheek.
“I’m making a C for Carson,” he said. Soon, there was a C on May’s cheek.
Wyndham tried for a W, but his father’s cheek was too small for that. Several minutes later the boys had finished.
“That was definitely mowing,” May said.
“You look like an alien!” Carson said. “Let’s show Mom!”
The men walked to the kitchen, where Jennifer was making breakfast. She took a look at May and nearly fainted.
“Whoa!” she cried. “Is that you, Mike?”
The boys belly-laughed.
“Oh, my gosh!” Jennifer said. “Oh, my! What happened? Who are you?”
“It’s Dad!” the boys exclaimed.
“Well, it doesn’t look like him,” Jennifer said, laughing. She walked over and smoothed the back of her hand over May’s cheek.
“I guess it is him,” Jennifer agreed. “Have you seen yourself yet, Mike?”
May realized that he hadn’t. He walked back into the boys’ bathroom and found himself in the mirror. The dark splotch that had always helped him frame his face was gone, replaced by acres of skin. May had never seen himself without a beard—not even in old family photographs from before he went to Ghana. He stayed at the mirror awhile longer, marveling at the changed face that stared back at him.
Days later, May struck a deal with HumanWare to put Sendero’s GPS software on the PDA. The breakthrough was nearly as significant as the grant. Sendero was now positioned to thrive. Sales increased. May hired more people. The company was rolling.
In November 2002, May’s dog guide, Josh, died at age eleven. The loss cut May deeply. Josh had crossed the cusp of some of the most important events in May’s life: moving to Oregon, the birth and raising of his children, starting Sendero, moving to Davis, gaining vision. More than once he’d saved May from speeding cars that had seemed to come from nowhere. May wondered if his new vision had troubled Josh, perhaps made him feel less necessary than he had in the days when they were an original team, in the days when May was blind. May couldn’t face another loss like this one. He told himself he would never get another dog guide.
Since his cornea rejection, May had been taking heavy doses of immunosuppressive drugs. In mid-2002, after consultation with Dr. Goodman, he gradually began to reduce the doses, and in early 2003 he stopped them entirely. This time, his transplant and his eye stayed healthy. He continued to see Goodman for regular checkups.
All the while, May practiced his new approach to vision, integrating his other senses with the visual and building mental libraries of clues to help him identify objects. Instances in which he felt overwhelmed grew increasingly rare. He got faster at recognizing things.
Still, there were regular reminders of the limitations of his vision. In 2003, for example, he made his long-awaited trip to a topless beach, only to discover that he couldn’t see much of a woman’s chest unless she was wearing a brightly colored bikini top.
“All these years I’ve dreamed of getting here,” he lamented to Jennifer. “Now I need the women to be dressed.”
In 2005, after two years of missing the warmth and companionship of a dog guide, May went to the Seeing Eye in Morristown, New Jersey, and got a new one, a golden retriever–Labrador retriever mix named Miguel. Another client had recently returned Miguel because he’d pulled too hard and shown too much initiative. “We’ll be a good match,” May told Miguel. The two have been together since.
In the summer of 2006, May and Jennifer traveled to London, where they had been invited by Richard Gregory to speak to a gathering of leading academics. The conference room was filled with some of Britain’s top vision scientists, psychiatrists, philosophers, ophthalmologists, neurologists, and psychologists. Gregory was eighty-two and emeritus professor of neuropsychology at the University of Bristol. In an introduction, he recalled his famous case study of Sidney Bradford and described May’s case; then he opened the floor to questions for May.
May was beaming after the meeting. He told Jennifer that it was remarkable to have been among so many brilliant minds and to be the subject of their curiosity. In the hallway, Gregory tested May on the hollow mask illusion, rotating a large Albert Einstein example in front of him. To the bystanders, the hollow side of Einstein’s face leaped outward, appearing every bit as convex as a real face. May did not perceive the illusion.
Gregory and a few of the other scientists took May and Jennifer to dinner at London’s oldest Indian restaurant, where their discussion lasted well into the night. After that, Gregory invited the Mays to be his guests at the fabled Athenaeum Club, which counted among its past members the Duke of Wellington, Charles Darwin, Charles Dickens, and one of Gregory’s old professors at Cambridge, the philosopher and mathematician Bertrand Russell. They talked about their lives in the club’s library. After midnight, Gregory drove the couple back to their hotel in Hyde Park in his hybrid Toyota Prius. May and Jennifer thanked Gregory and wished him a good night.
“That man is alive,” May said as they walked into the hotel.
The years since May beat his cornea rejection have been busy ones for many of the important people in his life.
In 2002, Jennifer May and her friend Penny Lorain formed their own interior design firm, Lorain & May, which specializes in all facets of residential and commercial design. Jennifer oversaw the expansion and redesign of the Mays’ home, where she continues to raise the couple’s two sons, and where Mike May continues to run Sendero Group.
Shortly after her son’s surgeries, Ori Jean May moved from Florida to Chico, California, about a hundred miles from Davis. In 2005, at age seventy-seven, she cracked a vertebra in her lower back. Doctors said that they could repair it, but that such surgery for a person of her age carried with it the risk of heart attack and stroke. “It’s a quality-of-life issue,” they told her. “If you don’t opt for the surgery the pain probably won’t worsen, but it won’t improve, either. You’ll just live with it.” To the surprise of none of her children, Ori Jean decided to undergo the surge
ry, which was successful. She continues to live in Chico, as do all four of May’s siblings.
Dr. Daniel Goodman continues to practice corneal and refractive surgery in San Francisco. He still sees May every three months for checkups, and the two meet occasionally for dinner or a ball game.
Bryan Bashin is currently a consultant to businesses and individuals, often working in the area of job development and coaching. He continues to monitor advances in the science and technology of vision restoration but has decided to put off his own surgery until the required immunosuppressive drugs are made less risky and the surgery itself becomes less disruptive of daily life. “I’m still open to the idea,” he says, “but for me, the time and the science still aren’t quite right yet.”
Ione Fine has continued to test May inside and outside the fMRI scanner; there have been no changes in the results. In 2003, she published a paper on May’s case, “Long-term Deprivation Affects Visual Perception and Cortex,” in the journal Nature Neuroscience. She expected it to prove interesting to colleagues. On the day the paper was published, Fine was attending a small conference in rural northern California. Her cell phone began to ring and did not stop for hours. Mainstream media from all over the world wanted to know more about May’s story. Fine spent the day standing on a nearby hill—the only place she could get cell phone reception—describing the strange visual world in which her subject lived. When her phone battery died she borrowed replacements from colleagues who owned the same model.
Based on her work with May, Fine received a five-year grant to study long-term visual deprivation and sight recovery. She was thirty-two years old, much younger than the average first-time grant recipient. The work also led directly to a professorship in the department of ophthalmology at the University of Southern California. She married longtime boyfriend and fellow vision scientist Geoff Boynton in 2003.
In 2006, Fine and Boynton accepted professorships in the psychology department at the University of Washington. She continues to test May in an effort to further understand how and why parts of his visual cortex changed their representations after he went blind.
During a routine physical exam in 2006, May’s family physician found a discolored spot on his chest. In past visits, such spots had not worried the doctor. This time, the man said, “This isn’t good, Mike.”
The doctor snipped a sample from May’s chest to send for testing. A week later, he called with the results.
“It’s malignant. You need to come in right away.”
In the office, the doctor applied a topical anesthetic and cut away the rest of the spot. He explained to May that such skin cancers were common among adults over age fifty, and that so long as they were detected and removed early, as this one had been, they usually posed no further danger.
“I took cyclosporine for a long time,” May told the doctor. “I always wondered if this day was coming.”
The doctor said that it was impossible to know whether the cyclosporine had caused the cancer. But he did not rule it out.
At home, May told Jennifer the news. Since the spot was so small and could not be felt, they would need to be vigilant in watching for others.
“Do you think it was the cyclosporine?” Jennifer asked.
“I was really curious about that,” May said. “But you know what? In the end, I don’t think it matters. In the end, no matter what, I would have done everything the same.”
ACKNOWLEDGMENTS
The author is grateful for the help and support of the following people:
Kate Medina, my editor at Random House, who believed in me and understood me from the start. Kate’s sense of story and instinct for what matters to people are the products of a beautiful heart. The help she gives a writer in finding and conveying his own heart is a gift that lasts a lifetime.
Robin Rolewicz, editor, for her unwavering support and encouragement, and for her insightful and invaluable reading of my manuscript. Robin was with me every day on this book, and her contributions helped me immensely.
Abby Plesser, editorial assistant, who read my work, cheered me on, and made things easy for me.
Gina Centrello, president and publisher of the Random House Publishing Group, who has made Random House a true home for me.
Sally Marvin, my friend and the best publicist in the business. I can’t imagine making these journeys without her.
Thanks also at Random House to: Dennis Ambrose, Rachel Bernstein, Nicole Bond, Sanyu Dillon, Sue Driskill, Kristin Fassler, Megan Fishmann, Paul Kozlowski, Ruth Liebmann, Marty McGrath, Elizabeth McGuire, Katie Mehan, Gene Mydlowski, Tom Nevins, Peter Olson, Allyson Pearl, Jack Perry, Thomas Perry, Bridget Piekarz, Lydah Pyles, Kelle Ruden, Carol Russo, Stephanie Sabol, Carol Schneider, Erich Schoeneweiss, Beck Stvan, Bonnie Thompson, David Thompson, Claire Tisne, David Underwood, Jaci Updike, Andrew Weber, Don Weisberg, and Amelia Zalcman.
Flip Brophy, my literary agent at Sterling Lord Literistic. I feel privileged to have joined forces with her and am so lucky to know that she’s by my side.
Mike May invited me into his home and his life. For two years, he sat for countless hours of interviews and was unwaveringly thoughtful and frank in his answers. Mike included me on business trips, doctor visits, family outings, Labor Day cookouts, and skiing weekends. He picked up the phone at every hour to answer my queries. And he was patient with me. I spent weeks asking him to recall the most minute details of his early vision, and pushing him to describe every moment of certain experiences; he never rushed a single answer or asked me to move things along. An author could not hope to work with a brighter subject, finer gentleman, or nicer guy.
Jennifer May was equally generous with her time and forthcoming in her answers. Not only did she forgive my intrusions into her family, she made me feel at home for the long stretches I spent away from my own home. Carson and Wyndham May were cool with me borrowing their dad for whatever time I needed him.
Bryan Bashin, a genuinely kind man with a wonderful mind. Some of the most interesting conversations I’ve ever had came over dinners with Bashin in Sacramento.
Dr. Daniel F. Goodman of San Francisco, who carved time from a busy schedule to discuss May’s case, the technical aspects of stem cell and cornea transplants, and the emotions a doctor feels when he has helped a person to see.
Richard Gregory, Emeritus Professor of Neuropsychology at the University of Bristol, who spent time with me in England explaining the critical role of implicit knowledge in human vision, and recalling his landmark 1963 case study of Sidney Bradford. No one has ever explained science to me more clearly or with as much passion and joy. It is impossible to know Richard Gregory and not wish oneself a fraction as engaged with the world and ideas as he is.
Dr. Ione Fine, without whom I could not have hoped to understand the brain’s role in vision or May’s singular case. Fine is exceptionally smart, and she also possesses that rarest of skills—the ability to explain complex concepts in ways that come alive for the layperson. It was never surprising, even when she was describing neural architecture, to know she was the daughter of a renowned children’s book author.
Professors Geoff Boynton at the University of Washington, Donald MacLeod at the University of California–San Diego, Steven Shevell at the University of Chicago, and Alex Wade at the Smith-Kettlewell Eye Research Institute in San Francisco, who helped me understand vision science; and Dr. Ali Djalilian, Assistant Professor of Ophthalmology at the University of Illinois at Chicago, and Dr. Edward J. Holland, Director of Cornea Services at the Cincinnati Eye Institute, who taught me about corneal epithelial stem cell transplantation. It was thrilling to learn from all of them.
Thanks also to: Dr. Mike Carson, Kim Casey, Fiona Morrison-Cassidy, Ori Jean May, Nick Medina, Mark Pighin, Sheila Randolph, Ron Salviolo, and Diane Slater.
Elliott Harris and Robert Feder of the Chicago Sun-Times and author Jonathan Eig have read my writing and have been my sounding boards for years. Richard Babcock of Chicago magazine gave me a
wonderful opportunity and made me a better writer. Jonathan Karp began my journey into books; his instinct for story and character continues to resonate with me.
I cannot adequately thank David Granger and Mark Warren at Esquire. I think differently about writing, manhood, and friendship from knowing them. I will never forget how passionately Mark believed in the Mike May story. I will always remember how Mark and David believed in me. Thanks also to Peter Griffin, Tyler Cabot, and Victor Ozols at Esquire.
Elizabeth Gabler and Rodney Ferrell at Fox 2000 Pictures, who connect with the spirit of my work and are two of the loveliest people I know; Gil Netter, a true friend and superlative producer at Fox; Bruce Rubin, a beautiful man and writer who reminds me often about what matters most; and Jonathan Liebman and Kassie Evashevski at Brillstein-Grey Entertainment, for their faith and support.
Two of the finest writers I know—Ken Kurson and Annette Kurson—reviewed and critiqued my manuscript. Ken is my best friend and his encouragement was inspirational. Annette taught me to write and continues to do so, not just through words but through a special sensitivity to the world. Jane Glover reviewed the book with the same sweet heart I’ve known since we were kids. Thanks also to Rebecca, Steve, Carrie, and Anna Kurson, and to Larry, Mike, and Sam Glover. And the memory of my dad, Jack D. Kurson, the best storyteller I’ve ever known. I still hear his stories in my dreams.
Dr. Steven Tureff, and Robert Gassman, Lynn Gassman, Lauren Freedman, and Mike Collins have been blessings to me and my family—I can never thank them enough. Thanks also to Steven Beer, Randi Valerious, Brad Ginsberg, Jane Thompson, David Shapson, Bill Adee, Seth Traxler, Dori Frankel Steigman, Ray George, and Daniel Meyerowitz; and to Mitchell Lopata of Lopata Design for his beautiful illustrations.
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