Authors: Robert Kurson
It takes about four months for the daughter cells to clear that path. Once the surgeon confirms that this has occurred, he removes the patient’s damaged cornea and replaces it with a healthy cornea from a second donor. If all functions properly, that new cornea will be protected by the new stem cells and the daughter cells they produce. And that can mean long-term vision.
By 1999, only fifteen or twenty surgeons in the United States had performed corneal epithelial stem cell transplants. It is likely that the procedure had been attempted fewer than four hundred times worldwide.
May’s days stretched from dawn to midnight as August drew to a close. Still, during his free moments, he found himself digging. He called ophthalmologists to ask if they had performed corneal epithelial stem cell transplants—he wanted to know how Goodman’s experience ranked among his peers’. He could not find a single doctor who had performed any. He dug into Goodman’s reputation and discovered a nationwide respect for the man. When he checked with his insurance carrier, he discovered that Goodman was a preferred provider and that a stem cell transplant might be covered.
In the Caravan one night, with Carson and Wyndham asleep in the back, May told Jennifer that he was thinking of scheduling the B-scan—the ultrasound that would look behind the surface of his eye to determine whether or not he was a good candidate for the surgery.
“It seems like it wouldn’t hurt to find out,” May said.
“That sounds right,” Jennifer said. “It’s not like it’s a decision to get vision. It’s just a step to see what’s there.”
The next day, May called Goodman’s office and asked to schedule the B-scan. He was referred to a San Francisco specialist in ocular ultrasound, who would perform the scan, after which Goodman would interpret the results. The receptionist scheduled May’s follow-up consultation with Goodman for September 23. He thanked her, called the specialist, and made an appointment.
On the afternoon of September 9, 1999, May walked with his Seeing Eye dog, Josh, to the local bus terminal, boarded an express to the Vallejo ferry, took the boat to the Ferry Building in San Francisco, then took a taxi to his appointment. The trip took ninety minutes.
The specialist explained the B-scan to May. He would anesthetize the eye and keep it immersed in a tiny bath of coupling fluid. Then he would place a small electrical probe on the eyelid that would broadcast and receive sound waves. The instrument would image the internal anatomy and structure of the eye in much the way an ob-gyn’s machine uses sound waves to image a fetus. The idea was to detect gross pathologies or abnormalities. It would be up to Goodman to explain the results.
The procedure lasted fifteen minutes and was painless. All that was left was to wait for the answers.
May’s appointment with Goodman was two weeks away. Sendero didn’t care. Its needs were insatiable, its problems always in bloom. Daytime stresses trickled into May’s nights. He had never been a sound sleeper—he was often restless, and would sometimes lie awake for hours thinking through business and life. Wrestling Sendero to the starting line did not improve his slumber.
Every so often throughout his adult life, lying awake at three
A.M.,
May would find his thoughts drilling down through the everyday and into the eternal. He would contemplate dying and mortality, try to get his arms around the idea of what it meant to be extinct. He considered what it meant to have no awareness—not even the ability to touch something—and how a person who made jokes and missed his kids by noon every day could disintegrate in the dirt until there was nothing left of him. These thoughts bore no relation to his everyday fears—of flying in bad weather, of sudden explosions—the kind that could be defeated by logic and guts. These were terrifying ideas, the type that lay in wait while he tended to business concerns and bickered with Jennifer about staying organized but that found him before dawn, when his mind had quieted and Davis had gone silent. They were the kind that could shake his core.
He rarely spoke of dying. Recently, however, May had found himself in just such a discussion with his father. Now living in Denver, Bill May had lost another job to alcoholism. Doctors could not promise that he would survive. May flew in to visit his dad. The elder May told his son that he had been thinking about what it meant not to be anymore, that he tried to imagine what it felt like to be gone. “I’m petrified of dying,” he said. May told his father, “Me, too, Dad.”
A few nights later, May was awake with these ideas. His usual antidote was to think about his accident, about how easily he might have died. Everything after that, he’d tell himself, was icing on the cake. On this night, however, he had a different thought. He wondered if, when he died, he would die bravely. He hoped that he would. Others, many of whom considered him the embodiment of courage, would have bet on it. But there was really no way to know until he got there. And it struck him that this was true about knowing oneself in general. It wasn’t who a person believed himself to be or what he predicted he would do in a given situation. It was what he did when he got there that defined him.
On the morning of September 23, 1999, May set out for his appointment with Dr. Goodman. He packed an early working version of his GPS product—complete with laptop and hockey puck–sized satellite receiver—for testing along the route. He was to receive the B-scan results that would determine his suitability for the rare corneal epithelial stem cell transplant surgery. Jennifer kissed him good-bye and wished him luck.
May and Josh took their usual route to the city—by bus, ferry, taxi, and foot. He made business phone calls on the way. He still believed that if vision restoration was possible, Dr. Fine would not have pronounced his case forever hopeless. But as his GPS guidance system delivered him to Goodman’s doorstep by tuning in to satellites that orbited the earth, he couldn’t help but wonder for a moment if nothing was impossible.
After he signed in, a nurse showed him to a room down the hall and asked him to sit in an examining chair, a request that seemed odd to him given that he was there to discuss test results. Goodman entered a few minutes later and shook May’s hand.
“Great to see you again, Mike,” he said.
“Great to see you, too. May I call you Dan?”
“Of course,” Goodman replied. “I want to take a quick look at that eye.”
Goodman dimmed the lights. He opened May’s right eyelid with his thumb and forefinger and used the penlight and biomicroscope to look inside. He tested the pressure inside the eye. Then he pushed his stool back and flipped on the lights.
“I’ve read your B-scan,” Goodman said. “The results are excellent. It shows no gross pathology in the back of your eye. Your retina and optic nerve look normal. The back of the eye is anatomically intact and healthy. It’s a normal scan.”
“What does that mean?” May asked.
“It means we have a good chance to restore your vision,” Goodman said. “It means that we can try this.”
Goodman understood the magnitude of his words. He watched closely for May’s response to the idea of new vision. He paid careful attention to the psyches of all his patients—he considered it part of the gestalt of his practice—and would not move forward with even a routine Lasik procedure unless he believed a patient was emotionally grounded and had realistic expectations. He had a keen gut instinct for such matters, but even so, the analysis was always more art than science.
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.