These were new risks to May, existential risks, and they swooped into his November with ferocity.
“These are big ones,” he told Jennifer as they closed his suitcase. “Add them to the list of risks we already made, and you really have to wonder.”
The next morning, May’s sister Diane called.
“Dad died,” she said. “I found him in his apartment.”
May had been expecting this call for years, and yet as he pressed the receiver to his ear, he couldn’t quite believe it had happened. Alcohol had nearly killed his father a dozen times, yet the man had always pulled through, always hung on to say that this time would be different, that he was tired of missing life. May’s relationship with his father had been cordial but not close, but as he hung up the phone he felt that he still had things to tell his dad, that this was not the right time for his father to die.
“My dad died but I wasn’t done talking to him,” May told Jennifer.
“What is it that you still wanted to say to him?”
“It sounds strange. But I wanted to tell him what I decided about the surgery. And if I went through with it, I wanted to tell him what it was like to see.”
Jennifer asked about his trip to Switzerland, scheduled for the next day. He said he would still go, then conduct a ceremony for his father when he returned. The next morning, she drove him to the airport and told him again how sorry she was about his father.
May unfolded his travel cane at the passenger drop-off area.
“He missed a lot of life,” he said, then kissed his wife good-bye.
May collected his luggage in Geneva and caught a train to familiar mountains. He had arranged a three-day visit with Fiona, his onetime love. She was married now, and to a man May admired, but she and May had never stopped caring for each other, nor had he stopped loving the way she saw the world, even if it happened now in airmailed letters.
At her chalet, Fiona and May toasted the visit and caught up on each other’s lives. Before long, they were walking the town’s streets and visiting its gardens, touching old wooden doors and kneeling beside strange flowers. Fiona saw movement in statues, life in water, wisdom in bridges, and she described it all to May in a streaming narrative of picture sentences that twirled a step ahead of wherever they went.
Fiona knew that May remained undecided about new vision, but out here his dilemma was void.
“Look at all this stuff!” she exclaimed. “Why wouldn’t you want to see it? You’ll be able to see the burgundy in these plants. You’ll be able to see those church bells wander when they ring. Why wouldn’t you want to see?”
Standing in the shadow of Mont Blanc, a beautiful woman by his side, a world breathing all around him, May could not think of a good answer why not.
At the chalet, Fiona and her husband sat with May and discussed the possible surgery, now just fifteen days away. As the daughter of a scientist, she was keen to know the details.
“How is it done exactly?” she asked.
“I don’t really know,” May answered.
“How many people have had it before you?”
“I’m not sure. Not many. I know it’s very rare.”
“Have the results been good?”
“I don’t know.”
“Is there a way to find out?”
“Well, there are a few case histories.”
“Have you read them?”
“No.”
“Why not?”
“I haven’t gotten to it yet.”
“Do you think you will read them?”
“Well, the surgery is scheduled in two weeks. I’m not going to be home for another five days. And I still haven’t decided to go forward.”
Before he left, May went on a final walk with Fiona.
“There’s Mont Blanc,” she said, gently turning May’s shoulders. “I’m going to describe it to you now. I want you to come back when you can see and I’ll show it to you again.”
May returned from Switzerland on November 11, 1999. The next day, he brought his guitar to a wooded area of a park in Chico, a town some one hundred miles from Davis, to conduct the memorial ceremony he had arranged for his father. Guests sat on folding chairs amid a grove of trees. Ori Jean, now living in Florida, did not attend. She hadn’t communicated with her ex-husband for years.
May had no idea what he might say or how the ceremony might unfold. He only knew that a torrent of emotion had been building since Europe—about life, about vision, about generations, about time—and that it felt right to give way to those feelings in lieu of a prepared eulogy, whatever those feelings might say.
He began by singing Kate Wolf’s “Give Yourself to Love” and Harry Chapin’s “Circle,” songs he loved for their family themes. Then he spoke about his father. It wouldn’t honor Bill May, he said, to pretend that he hadn’t led a painful and difficult life; nor would it help to remember him by forgetting that he’d sometimes hurt them. But what he asked the guests to consider was how, in the throes of this tragic existence, Bill May had remained a wonderful thinker, an interested person, a loving father, and a likable man. He asked family members to share their favorite memories, and as they came forward he could feel his emotions charging harder, they still needed expression, something still needed to be said, and when the last stories had been shared, May stepped forward and spoke, never stopping to shape what he’d say, just letting his words go while he let his father go, and what he said was that this lost life was a wake-up call, a reminder to anyone who might be waiting for a better time to do their living that none of us has forever, to grab now, and all the thinking and wondering and risk assessment he’d done in Europe and for the last year came pouring out, and for a moment he didn’t know exactly what he was saying, but he remembered what he said near the end, he remembered saying to the guests, “Let’s not wait around,” and then he took his guitar and played a Kathy Mattea song called “Seeds,” one he loved because it talked about the difference between dreamers and those who do.
Two days after his father’s memorial service, May asked Jennifer to sit with him at home. The surgery was eight days away. He still had not read the case histories, still had made no decision.
“It’s time to commit one way or the other. I’ve taken all the factors and separated them into two columns, pros and cons. It’s amazing. The con column is overflowing: there are the health risks, the fifty percent chance the surgery won’t work, the risk the vision won’t last, the chance it’ll be snatched from me without warning, the uncertain quality of the vision itself, the risk to my light perception, the fact that I don’t know anyone who’s been through this, the strain on Sendero, the potential pressure on our marriage, the questions about who I am and who I’ve conceived myself to be all these years, not to mention the fact that life is already great without it—all of these factors are piled up and spilling over in the con column.”
Jennifer kept listening.
“And then I look at the pro column and there’s only one thing there, it’s all by itself. And that one thing is my curiosity. That one thing is the chance to know what vision is all about. And no matter how I look at it, that single factor seems to outweigh the entire mountain of reasons not to do it.”
For months, Jennifer had stayed neutral, careful to allow her husband the space to make such a highly personal decision. Now he sounded different. Now he was talking about who he was.
“I think you should do it,” she said. “I think you should go for it.”
The next afternoon, May gathered his sons at the kitchen table.
“I want to talk to you guys,” he said.
“Okay!”
“You know I’ve been considering having some surgery that might help me see, right?”
“Right!”
“Well, I’ve been thinking about it for a long time now. It turns out it’s complicated. There’s lots of stuff to consider.”
“Like what?”
“Well, for starters, I could go through
all the surgery and it might not even work. Or the vision might not last very long. Anyway, it’s just a week until I’m supposed to go into the hospital. So I want to tell you what I’ve been thinking.”
The boys kept smiling and looking at him.
“All my life, whenever something seemed interesting to me, I went out and tried it. Sometimes I got bloody, as you guys know from my stories, and sometimes I ended up on big adventures. But no matter what happened, I was always happy I tried. Trying meant that I knew what things were like. Like when I crashed Aunt Diane’s bike. I didn’t want to sit around my whole life wondering what it was like to ride. That would have been worse than crashing, don’t you think?”
“Yeah!”
“So, I’ve been thinking about this surgery for a while now. And I keep wondering what it would be like to see. It’s not that I need to see or that my life will get better if I can see—I mean, my life is pretty great already with you guys and Mommy and all the things we do. What seems great is getting the chance to know what this vision stuff is all about. Can you imagine anything more interesting than getting a chance to see what it’s like to see?”
“Yeah, that would be cool,” Carson said.
“Yeah, you could drive us!” Wyndham said.
“So what I’m telling you guys is that I’m going to do it. I’m going to do the surgery next week because I wouldn’t really be me if I didn’t. I don’t know what’s going to happen, but that’s a big part of the fun, too. And the best part will be figuring it out with you guys. You two will help me figure it out no matter what it is, right?”
Carson and Wyndham looked at their dad. It was light outside. Dinner was still an hour away.
“Come on, Dad,” they said. “Let’s shoot some baskets.”
CHAPTER EIGHT
Mike May had traveled the world but he’d never been nervous to pack a pair of socks. Now, in his bedroom on the night before the first of two surgeries designed to give him vision, he fiddled with his footwear as worries flew through his brain: Will the anesthetic sicken me as it did during my childhood eye surgeries? Will there be stem cells available when I get to the hospital? Why am I putting knives in my eye when my life is fine already?
Jennifer put her arm around her husband and helped him fill his suitcase. Then they walked to the kitchen to talk to their kids.
“We’ll be staying at Manpa’s house tonight; it’s very close to the hospital,” she said of her father’s home in Menlo Park. “Tomorrow morning, Daddy’s going to have his first surgery. It won’t make him see, but it gets him ready for the next operation a few months later, and that’s the one that might give him vision.”
“You guys behave for Grammy OJ,” May said, referring to his mother, who had arrived to babysit. “We’ll be back tomorrow night. I’ll probably look like a mummy with all the bandages on my face, so beware.”
May and Jennifer arrived early that evening at her father’s home. They were due at St. Mary’s Hospital in San Francisco at six A.M. the next day. They climbed into bed early, but May couldn’t sleep. He still tasted the ether of his childhood operations, still wondered if some poor soul who’d checked “Donor” on his driver’s license had died that night, still poked at memories of being trapped in hospitals by people who hadn’t asked if he wanted to see.
They made it to the hospital the next morning with time to spare. On checking in, they learned that stem cells had indeed become available. The staff dressed and prepped May, even using a marker to highlight the eye to be operated on, a curious move given that his other eye was plastic.
A few minutes later Dr. Goodman entered the room, greeted the couple, and reviewed the surgery. First, he would scrape away the conjunctiva cells that had grown on top of May’s existing cornea—the ones that had accumulated because May’s stem cells had been destroyed and therefore could not produce daughter cells to keep the area clear. Then he would remove a ring of tissue from around the donor’s cornea—a ring that contained the stem cells—and place it around May’s own cornea, securing it with sutures. The trickiest part would be shaving the ring under the microscope from a thickness of about one millimeter to one-third of a millimeter, all while May waited unconscious on the table, the truest test of Goodman’s tremorless hands. If all went well the surgery might last ninety minutes.
Goodman wished the couple good luck and departed. At the same time, the donor stem cells were being delivered to the operating room in a red-and-white Igloo cooler, the gift of a young man killed the day before in a motorcycle accident.
The surgery went smoothly from beginning to end. May awakened in the recovery room bandaged, in pain, and nauseous. Goodman entered a few minutes later and squeezed May’s shoulder.
“It went great, Mike,” he said. “Things are looking good.”
He explained that it would take three or four months for the transplanted stem cells to make enough new daughter cells to cover the corneal surface and to forge clear pathways for future daughter cells. If that happened, Goodman could transplant a new cornea into May’s eye, one that would stay protected and be kept clear. He instructed Jennifer in applying postoperative medicines and reminded them to visit the nephrologist he had recommended.
“We’re halfway there,” Goodman said. “Let’s keep our fingers crossed.”
Shortly after the surgery, Jennifer drove May to Sacramento for his appointment with the nephrologist, a medical doctor who specializes in kidney function and diseases. Nephrologists are more expert than ophthalmologists in using immunosuppressive drugs to prevent transplant rejections, which is why Goodman had made the referral.
The doctor skipped the small talk. May would need to take cyclosporine in order to prevent his body from rejecting his new stem cells, as well as the new cornea he was to receive in the coming few months.
“There are risks of side effects with a drug as powerful as cyclosporine,” he said. “You need to consider them. They’re serious and they’re real.”
The doctor listed the risks from bad to worse: appetite loss, diarrhea, tremors, nausea, vomiting, hair loss, increased susceptibility to colds and flu, high blood pressure, elevated cholesterol, heightened vulnerability to infection, decreased ability to fight infection, ulcers, kidney failure, liver failure.
And then he dropped the bomb: cancer.
May and Jennifer sat dumbfounded. They’d been briefed by Goodman about these risks—he’d even told them of a patient who’d died from such a cancer. But his warnings had never anchored with them; somehow they’d both pushed his words to a hiding place. They’d barely discussed it. May wanted to tell the nephrologist, “Wait, this is something I hadn’t bargained for.” Instead, he managed to ask, “What are the chances that I’ll get…the serious side effects?”
“It’s hard to say. I don’t deal with healthy patients like you. The people I treat are usually very sick—they need major organ transplants, their lives are on the line. If they do get sick, it’s tough to figure how much was due to the medicine and how much to their existing illness. But they’re in a different boat than you are. The risks are worth it to them because their lives are in grave danger. You’re the picture of health.”
The doctor wrote a prescription and gave May a schedule for checking his blood work. Driving home, May and Jennifer wondered aloud about how the gravity of these risks had not really registered with them. On that ride, and in the subsequent days, they would talk about whether new vision was still worth it, whether it was worth it to risk dying in order to see. The conversations always ended the same way: May told Jennifer that he’d chosen to go forward for important reasons and that those reasons hadn’t changed. And then he told her this: I never back out.
Four months remained until May’s second surgery. He used the time to throw himself into Sendero, preparing the company and its product for a spring launch at one of the nation’s premier technology conferences for people with disabilities. He pushed away thoughts of new vision—and just about everything else
—in a headlong rush to turn his GPS prototype into the real deal.
A week before the second surgery, while skiing in Telluride with Salviolo, May began to shake and turn nauseous from the cyclosporine. He lay in his rented condo and wondered if this was what it felt like to die. He pulled himself together and, on the last day of vacation before the surgery, made it to the top of a mountain. He stood there for several minutes, inhaling the open air and the surrounding peaks, knowing that he might never again experience this sport he loved, this world he loved, in this way that had been his character, his life, since age three, the blind way, a beautiful way, the only way he knew.
“This might be it,” he thought as he turned his head across the panorama. “God, it’s been fun.”
May reported to St. Mary’s at dawn on the morning of his scheduled second surgery. He didn’t bother to say good-bye to his blindness or otherwise reflect on what might be a big change—he knew it would be weeks before the results were known, just as it had been weeks before his bandages had come off after the stem cell transplant. The date was Monday, March 6, 2000. His big technology conference was just two weeks away.
Goodman transplanted the donor cornea—from another young motorcycle victim—without incident. When May awoke, his eye was bandaged but he felt none of the nausea he’d experienced the first time around.
“I know you’re busy, Mike, but I need to see you in my office for ten minutes tomorrow, just a quick checkup to make sure things are healthy,” Goodman said.
The next morning, May and Jennifer arrived at Goodman’s satellite office in San Mateo. A nurse showed him to an examining chair in a small room. Jennifer found a stool a few feet away.
“I just called your mom,” Jennifer told May. “The boys are off to school. Carson forgot his jacket. And a package came for you.”
“That must be the replacement antenna I ordered,” May said.
Crashing Through Page 13
