Hello Darkness, My Old Friend

by Sanford D. Greenberg

  One further note here. For many years, David was said to be the richest man in the world. For me, he was richest of all in wisdom, a substitute father for the two I had lost along the way. David was already 101 years old when I visited him in late 2016 at his home at Pocantico Hills. We had taken some years earlier to hugging when I left. This time, he asked me to kiss him on his cheek. When I did, he offered me the other cheek, too. I’m sure now this was his way of saying a final goodbye.

  Another person who became both an example to me and a friend was former justice William Brennan of the United States Supreme Court. He came onto the bench in 1956 as a recess appointment made by President Eisenhower and would in time stand out as one of the most humane justices to sit on the modern Supreme Court. Our friendship grew into one of the great treasures of my life. He would invite me to his office, where we would order in lunch and discuss issues of jurisprudence and other abstract ideas, as well as the law school we had both attended. Which was the best legal document ever written? The Bible? The United States Constitution? The Talmud? There was always something valuable in his comments, but of even greater value was the guidance that flowed from his personality and from his outlook on life and how it should be lived.

  I have often speculated on why these supporters at all levels showed such generosity toward me. Has it often been just sympathy for a blind guy? Could be. But perhaps, I sometimes think, it is because I myself am open with others—as I so often must be. As noted earlier, I need a lot of extra help in living my life. In the process, I necessarily offer my trust to people, which may trigger a correspondingly generous response, especially from good people who happen to be imbued with the spirit of helping others. In other words, I suspect that a reciprocity is established. Whether that is so or not, the fact is that my reliance on so many people has greatly enriched my life. Yet another compensatory balance, perhaps.

  A few people in one’s life stand apart from, and in some way above, one’s community, and even one’s friends. In my life, those people have been my late mother and grandmother and now, after the half century or so we have been together, my wife. In this account of my life, Sue stands alone—not just for the usual sentimental reasons, although I harbor a lot of those, but in ways practical and rational.

  There were a multitude of things Sue did not have to do. She did not have to wait for me or worry about me when I was in college, not feeling well, my prospects extremely doubtful. She worried so much that it made her sick. She lost twenty pounds, this from an already slender young woman. I had diminished her, and it seemed unfair. And then she married me, another thing she did not have to do.

  She was still young and might have had a number of suitors. I might have seemed like a catch at one point, but when I returned from college and then Detroit, my eyes shot, I more likely resembled a man without much of a future. She waited out that period, read to me, and stayed with me. What does that say about her? It says she is persistent, she is hopeful, she has faith—even though she is not especially religious. She has faith in the human spirit.

  She definitely did not have to stick around with me during the horrid graduate-school years when, as clear as day to anyone, I was headed nowhere but straight into professional studentdom and perpetual debt. Her father would say to me, “When are you going to get a W-2?” and I would tell him, weakly, that the longest way around was the shortest way home.

  As powerful as that old bromide was to me, Sue’s father found it less explanatory of our immediate circumstances, and Sue almost certainly would have agreed. She did not want to give me care after I graduated from college, but she did it anyway. She did not want to make my dinner; she did not want to stay up when I had to, reading to me in our shabby graduate-student apartments; and she did not want to record tape after tape after tape for me. She wanted none of that, but she did it.

  They say there is no truly selfless act, but I believe that Sue has lived an essentially selfless life, doing for others, not for herself. I cannot account for any aspect of Sue’s commitment. Oh, I could say I was a kind man, an excellent lover, and a terrific companion in those hard years, and even if all that was true, it still would not have made sense for her to choose to endure the difficulties of being with me the way she did.

  I do not know why Sue stayed with me—is love an answer? Does that mean she believes in love? I don’t know, but Sue is the center of gravity of the story I am struggling to tell here. She is the love of my life, and not just because she stuck with me and was my support.

  Respectability always catches me by surprise. At one level of self-perception, I’m a blind guy, the kid from Buffalo. What’s the big deal? At another level, honors accrue, and I honor them.

  One of the sweetest moments for me was the letter I received in 2016 inviting me to join the American Academy of Arts and Sciences. Launched by John Adams and James Bowdoin way back in 1780, the Academy is among America’s oldest learned societies. Its members range from Benjamin Franklin to Alexander Hamilton, Thomas Jefferson, Thomas Edison, Ralph Waldo Emerson, and (to jump way forward) me. Talk about asymmetry! But I was incredibly flattered to be tapped—there have been fewer than five thousand fellows inducted in the nearly 240 years of the Academy—and I join in whenever I can in the rich array of symposia available to its members. Apart from the intellectual stimulation, I feel almost duty-bound to do so, given all the opportunities America has afforded me and my family. But whatever takes me to Academy events—my own induction, talks by others, presentations in which I take part—I always know that I am there by the grace and upon the shoulders of those I have mentioned in this chapter and so many others.

  21

  A Promise That Cannot

  Be Broken

  I withheld the names of two other friends and mentors from the previous chapter, not because they are less important but because they propelled me so powerfully into the future that they seemed to deserve a special mention.

  One of those wise counselors, Ron Wyden, the senior senator from Oregon, put much of this book, and my life, into perspective when he told me how important it is “to be in the tikkun olam business,” evoking a solemn commandment of the Jewish religion literally to repair the world.

  “Perfecting the world, the opportunity—both for our country and for our world—to make them a better place for those who come after us is a very important Jewish value,” Ron continued, “and I happen to believe that Jewish values are American values.”

  I agree, and would say the same thing of fundamental Muslim values, and Buddhist ones, and Christian ones, and Shinto ones, and agnostic and atheistic ones, and on and on. At heart, just about all of us want to make the world a better place for those who come after us. But Ron’s words had a special resonance for me because as he spoke, I was remembering my own tikkun olam moment: that dismal winter day in 1961 when, lying in my Detroit hospital bed, I answered a Call from a higher power and made a promise to help end blindness forever.

  Have I been absolutely steadfast in delivering on my promise? No, not really. Education, marriage, children, the White House Fellows program, launching my first companies, the Council on Foreign Relations, the National Committee on US-China Relations—they all intervened. Success in school and in business is rarely time-neutral. But the Call was always there, waiting to be served, and I seized what opportunities I could to push it forward.

  When I was asked to join the boards of Johns Hopkins University and Johns Hopkins Medicine, with its school of medicine and hospital and its acclaimed Wilmer Eye Institute for advanced research and treatment in ophthalmology, I eagerly accepted. Later, I became chairman of the board of governors of the Wilmer Eye Institute—a position uncannily appropriate for a blind person who has dedicated himself to ending all forms of blindness.

  I was equally happy to serve as chairman of the Rural Health Care Corporation, created by Congress to bring the benefits of telemedicine to rural America. This work was particularly meaningful to me since rural areas are ob
viously underserved medically and often impoverished. It reminded me how important that service would have been to the people I knew in my childhood. It might even have prevented a young boy from going blind.

  In that same spirit, I gladly accepted President Clinton’s invitation to serve on the National Science Board, which operates the National Science Foundation. That, in turn, gave me the standing to push hard for funding for further research on a retinal prosthesis being developed by Dr. Mark Humayun, a gifted young clinician-scientist then on the Wilmer faculty. Our first two attempts to secure funding came up short, but I’m nothing if not persistent, in business and in life, and our third try in 1998 proved the charm. Mark went on to invent and commercialize a retinal implant designed to help patients with genetic retinitis pigmentosa, but he didn’t stop there.

  In the two decades since, Mark has done further breathtaking work on electronic visual prosthetics. I’ll let him describe his most recent breakthrough:

  “Currently, the focus is primarily on developing a visual cortical implant that bypasses the eye and optic nerve completely. So far, six subjects have been implanted with good results.”

  Six subjects is far from clinical confirmation, but the very real possibility that the blind can “see” essentially without working eyes and a functioning optic nerve suggests just how bold and daring the thinking has become in a field that once offered only alternatives to sight instead of hope for its recovery.

  Along with my public service, many of the companies I founded were involved with medical technology. My first interest as a businessperson had to be the viability of each—I don’t shy from profit—but I also focused on whether each new company might provide value for the common good.

  One of the companies I founded was a marriage of the biological sciences with information technology. We tracked how antibiotics work against various diseases. Hospitals would use antibiotic X or Y and report on that use and its outcomes into a database. My company would then aggregate and maintain the data from a number of hospitals and share the information with drug companies or whoever else wanted to pay to receive it. The information was used, in turn, in whatever research, development, or initiative the customers were undertaking. We also classified and catalogued patients’ reactions to certain antibiotics. It was not a flashy business, certainly, but it was an endeavor that—down the road—would improve medical care and health outcomes for many people. In a way, we were librarians, archivists of disease.

  I cite this company as an example of the kind of business that has attracted me. It was an opportunity to do something for my larger community. As Tom Stoppard wrote, “Information is light.” That this and other companies I founded did very well gave me the means to indulge my Call in ways unavailable to most Americans.

  Two early examples stand out in this regard. The first, in 1984, came about with the personal help of Dr. Torsten Wiesel, winner of a Nobel Prize for mapping the visual cortex. At my request, Dr. Wiesel organized a symposium of outstanding scientists, held privately in Washington, to assess the work going on in the field. Further colloquies were later held through the good offices of Dr. Elias Zerhouni, then director of the National Institutes of Health.

  These gatherings were rich with leading experts and invariably intellectually exciting, but none of them gave me confidence that the relevant science was far enough along to yield feasible clinical results anytime soon, or perhaps even within my lifetime. In the end, much as I enjoyed them, they left me more anxious than satisfied.

  Yes, all these outreaches were “proof” that I had made a good-faith effort to fulfill my promise—I was actually trying to find a way so that youngsters like I had been would never again go blind. But if I lacked faith that these efforts would produce anything close to the desired outcome, was I just making a devil’s compromise with my own ambition?

  I imagined that if I went back in time and explained to my newly blind self that I had tried “really hard” to accomplish what I had promised, that stern young man would reply, “Not good enough! You think it is okay just to try? Columbia doesn’t grade on effort expended, on hard work. It grades on results. Just trying is insufficient.”

  At least, I comforted myself, my promise to end blindness was closely held. My mother and my lifelong friend Sandy Hoffman had been in the hospital when I made the vow. Later, I told my college roommates Art and Jerry, and Sue, of course. But that was it. I had wisely spared myself the public embarrassment of shouting it from the rooftops, then coming up short.

  “Wisely”? The more I thought about it, the more that adverb caught in my throat. Maybe, I finally acknowledged, the problem lay right there. I hadn’t dared enough. I had talked big in a small circle. I had even thought big along a narrow track. Perhaps the time had come to reach out to a wider world.

  As I pondered this, I found my thoughts returning more and more to my close friend Sol Linowitz. Sol had won early fame by turning a company called Haloid (soon to be rechristened Xerox) around, but he had subsequently emerged as a highly successful diplomat and a leading Washington lawyer and powerbroker. If I was going to take the Call beyond my immediate circle and broaden its ambition, I couldn’t think of a better person to include, and so I did. Sometime later Sol called me and said that he would like me to meet Dr. Jonas Salk of polio vaccine fame.

  And that, as Robert Frost once wrote, “has made all the difference.”

  The three of us duly convened in Sol’s office for the better part of an afternoon. When the meeting was over, I walked outside and asked my driver to take me to a peaceful open space so I could be alone. At first, I only listened to the chatter of birds, but then my excitement grew. For the first time, I felt there was realistic hope for the promise I had made to God. The reason: Dr. Salk had urged upon me a focus beyond the treatment of a disease’s symptoms or its individual physiological effects. After all, he had made his own objective nothing less than to end a disease…and he succeeded! In my mind, I repeated, “End it! End it! End it!” I have never forgotten that.

  That was the first step not only to regaining confidence that I could deliver on my vow but also to thinking in a larger, far bolder arc. To date, at least in my own mind, I had been defining success as developing techniques to regenerate the optic nerve. (That would hold the potential for allowing me to see again, for example.) But blindness takes multiple forms, just as polio does, and Jonas Salk’s genius, I now realized from sitting with him for an afternoon, was twofold: to attack the entire range of the disease and to start at the finish line—not with incremental progress but with routing the disease itself.

  Just as John F. Kennedy had with his vow to land a man on the moon before the end of the 1960s, so Dr. Salk had raised a signpost for others to see and follow. Both men provided an organizing principle that broke down narrow interest groups—the MBA term is “silos”—and turned isolated, helter-skelter research to common purpose. And, of course, in both instances, the results were giant steps forward for mankind.

  If outer space and polio, I began to think, why not blindness, too? If Jack Kennedy and Jonas Salk, why not—of all people—a blind Buffalo guy named Sandy Greenberg? And if blindness, why not the whole range of other conditions that would benefit from the capacity to regenerate and otherwise repair tissue across the entire central nervous system? Isn’t that the essence of a tikkun olam—something so large, so ambitious, so crazy, really, that it almost scares? It was time to jump into the deep end.

  Accordingly, on October 18, 2012, Sue and I announced the establishment of the End Blindness by 2020 Prize, accompanied by a substantial award—$3 million—to be bestowed December 14, 2020, upon the person, group, or institution deemed to have made the greatest scientific and medical contribution toward advancing vision science for human patients. The award ceremony—to take place in the chambers of the United States Supreme Court, thanks to the kindness of Justice Ruth Bader Ginsburg—will be a celebration, of course. How could it be otherwise? Darkness shall become lig
ht! The blind shall see! But we also intend to frame the moment as a judgment, the righting of an ancient wrong. And thus, to borrow from Virgil’s Aeneid, which did so much to rally my spirits and lead me to the book you are now reading: “Even this we will be pleased to remember.”

  (More about the prize, the accompanying campaign, and the governing council and scientific advisory board can be found in the epilogue. I urge readers to take a look.)

  I most definitely do not wish to inflate my importance in all this. I am not a player in the world of science. I am not even a coach or a team owner although I have had a financial interest in various professional teams and once owned a sports venue: the venerable Cleveland Coliseum. The players in this far more important arena are the researchers, their professional leaders—their coaches, as it were—and their colleagues around the world who produce knowledge in ancillary but possibly quite relevant areas. I am a businessman, but I do tinker with ideas, and many of them run toward technology and science. Most important, I am a dreamer who, because of my limitations, knows no horizons.

  That is precisely why I dared to raise this new signpost and why I dare to look beyond blindness to where our prize and all this effort might ultimately lead.

  From the intricate knowledge of every ocular-system cell might we not reasonably anticipate that important new medical diagnostics and dispositive treatments would subsequently flow? What if instead of laboriously drilling down toward the mysteries of the most basic platform of human life and struggling to connect the parts, we were able to understand and follow the processes of life from that base upward, change by physiological change, interaction by interaction? Imagine, then, the enhanced predictability of diagnoses and treatments for disease, and even prevention. And go further: imagine how this approach might spread to aid Parkinson’s and Alzheimer’s victims, para- and quadriplegics, and so many more who find themselves at the mercy of failed nerve clusters.