Well, I am feeling tired. It has been a long, demanding day, one very likely to fatigue anyone’s senses. Just as I am not given vision, I am not much given to visions. This vision before me, coming so late in the party, is surely being offered to me not as something real, like a table or a trumpet or a galaxy, but as a benediction—that the promise Arthur and I made to each other long ago will be honored through future generations. I am not just one soul. Nor, would I suppose, are you.
Now, this is splendid—the sun itself has come to the party. The one in our own solar system, that is, to the evident excitement and joy of the Egyptian priests and also, I see, of other religious figures whose doctrines I cannot place. (I think I see Mani, although that makes me think specifically of light, and I cannot suppress a twinge of regret.) I am happy to see the sun at my party because, after all, without it we would have no heritage, and there would be no party. There would be none of us at all. So many guests are paying respects to the sun—I see even a dripping-wet Icarus, a good loser, among the knot of admirers—that I wonder whether all religions, including my own, do not somehow spring in spirit from the ancient human awe and respect for such a stupendous life-giving entity.
Standing behind the sun are all the stars and clouds of matter and forces of all sorts, giving our own petite sun an unaccustomed pride of place in honor of the occasion. The other guests passing near stare at them all in utter awe, becoming silent for a moment. Even the irritating Greek Chorus. The stars—are some of them in fact the souls of good, innocent men, women, and especially children, as well as animals, who have perished?
I think, too, of lines from the first love poem I ever wrote to Sue: “…And, my beloved, when our day is done, / Let us together hide amid a crowd of stars / Until the sun shines no more.”
What a gas! And how rewarding. I’ve been planning this party my entire life—a blow-out thank-you gala for the myriad people living and dead, things, forces, concepts, even creatures that have helped shape my life and led me to where I am at this very moment, sitting at my desk, dictating the end of these remembrances. That’s humbling enough. Why bother with Sandy Greenberg?
But another thought came to me just now, too. All these guests, even those I couldn’t have met or barely know of, have been planning this party just for me at the same time. That’s how the world really works, I’ve come to realize. We’re connected across time and space—sometimes minute, sometimes infinite—with the entire history of our species, the whole of this fragile and wonderful earth. The past sets the table for the present; the present must take care to set the table for the future. That single insight, so hard-won and to me so precious, might well serve as a coda.
Epilogue
To End Blindness Forever
I often wonder if John F. Kennedy, had he lived, would have been surprised when Neil Armstrong took that first step on the lunar surface on July 20, 1969. Yes, the president had established the goal of landing a man on the moon before the end of the decade in his May 25, 1961, address to a joint session of Congress. But did he really think that something so far beyond the boundaries of existing technology was achievable in less than ten years? Or was he simply trying to wake up a slow-moving space program before the Soviets topped it again?
Apollo 11 was much on my mind when Sue and I established our End Blindness by 2020 prize. By intent, the duration between our 2012 announcement of the prize and its presentation on December 14, 2020—2,978 days—is exactly the same as the space between Jack Kennedy’s address to Congress and Armstrong’s first “giant leap for mankind.”
I also had some of the same questions about my own motives when I announced our blindness quest. Was it really possible to end the ancient scourge of blindness within less than a decade? Or was our prize—initially $2 million, now grown to $3 million—more aspirational in nature, a signpost meant to pull together researchers worldwide to the common benefit of humanity? Now, eight years after we first made the prize public, I can say with confidence that both those are true and that the two goals have worked together in remarkable harmony.
Because blindness is many discrete diseases that arrive ultimately at the same place—the loss of sight—a more measured approach to fulfilling my tikkun olam might seem to have been in order. Perhaps an End Glaucoma prize, followed by an End Retinitis Pigmentosa campaign, and so on down the gamut of conditions that threaten vision. But I believed that the sheer audacity and sweeping nature of our goal—to end all blindness, forever—would demand the attention that a lesser goal might have failed to garner. And in that assumption I was quickly proved correct.
On December 12, 2012, only two months after Sue and I first announced the prize, Senators Chris Coons of Delaware and Rand Paul of Kentucky (himself an ophthalmologist) held a colloquy on the floor of the United States Senate to advocate the value of the End Blindness Prize.
As Senator Coons said: “Is this outrageous? Is this audacious? Maybe. But that is what experts said when President Kennedy stood before this Congress—in the same year, 1961, that Sandy lost his sight—and challenged our nation to put a man on the moon by the end of that decade. The best and brightest minds, the top scientists and researchers of [President] Kennedy’s generation rose to that challenge and achieved his impossible dream. Now, for this generation, Sandy and his wife, Sue, have once again raised our sights and challenged the best scientific and medical researchers in the world to rise to an enormous challenge—a challenge that has been with us from the beginning of mankind.
“In the Bible itself we hear of blindness, of people who could not see with their eyes but only their hearts. For millennia, humanity has struggled to understand and overcome blindness. Yet today we have the scientific tools necessary to reach for a cure—to restore the physical sight so many of us take for granted to those who otherwise live in darkness…”
(Art Garfunkel might have put it even better when he wrote of our Call: “We are searching for nothing less than light.”)
The following year, at the 2013 World Economic Forum in Davos, Switzerland, I attended a dinner celebrating eleven winners of the Nobel Prize. Inspired by a sudden rash impulse—and given courage, I’m sure, by our blindness prize—I approached the host, Nature editor Philip Campbell, and poured out to him the rationale for ending blindness. To my amazement, after a brief silence that hung in the air, he generously allowed me to give an unscheduled after-dinner talk on our concept, what amounted to an extemporaneous mission statement.
Afterward, several people came over and introduced themselves, among them the great neuroscientist Dr. Eric Kandel. He later recommended me to be on the panel of the 2014 Charlie Rose television program about blindness (The Brain Series), on which I described our campaign, as well as my harrowing adventure on the New York subway system. The panel discussed the technological advances in the treatment of eye disease made by guest researchers on several fronts, who themselves explained developments in such areas as gene therapy, retinal prosthesis, and stem-cell therapy, such as for nerve regeneration.
Aware of my efforts concerning blindness, Professor Klaus Schwab, founder and head of the Davos Forum, elevated the End Blindness by 2020 campaign by making it a topic for its own dedicated panel session in 2014. That session featured Dr. Joshua Sanes and Dr. Alfred Sommer, two of the world’s leading medical scientists who are members of the scientific advisory board for the End Blindness by 2020 Prize. In one stroke, this raised the campaign to the level of international awareness among leaders in government, business, and technology. Momentum was building.
For the following year Professor Schwab expanded the structure of the panel, asking Susan Goldberg, editor in chief of National Geographic magazine, to serve as moderator, so as to give it even more weight at the forum. Researchers in the physiology of the eye at the very top of their fields participated in both forums. At that session, Susan asked me to present the objective of the End Blindness Prize. Later, Susan teamed Arthur and me up with a photographer to reenact our subw
ay odyssey of fifty-five years earlier, as described in chapter 22. The resulting September 2016 National Geographic cover story, “The End of Blindness,” brought widespread attention to our cause. To further highlight the campaign, the famous—and blind—operatic tenor Andrea Bocelli performed at the 2015 plenary session.
The BBC World Service’s Outlook also devoted two programs to End Blindness by 2020. In 2018, the Public Broadcasting System of the Netherlands produced a television documentary describing the progress the End Blindness by 2020 campaign has made.
Our signpost, in short, has been seen. Our Call to end blindness forever has taken root in the public’s imagination, just as landing on the moon did a half century ago. Meanwhile, the well-publicized “bigness” of our ambition has helped immensely in recruiting the necessary infrastructure for our prize.
From the outset, my intent was to establish both a national governing council for the End Blindness Prize and a scientific advisory board to help determine the winners. I had hoped to people both with America’s leading lights of civic virtue and scientific and medical accomplishment, but I never dared dream that so many of those I asked to serve would agree so willingly. I truly am the luckiest man in the world to have the support of such as these.
Governing Council
· The Honorable Michael Bloomberg, founder and CEO, Bloomberg LP; philanthropist; three-term mayor of New York City
· Dr. William Brody, president emeritus, the Salk Institute and Johns Hopkins University
· The Honorable Bob Dole, statesman, United States Senator, Congressman
· The Honorable Elizabeth Dole, United States Senator, cabinet secretary, founder of the Elizabeth Dole Foundation
· Mr. Art Garfunkel, singer, poet, and actor; winner of eight Grammy Awards, including a Lifetime Achievement Award
· Dr. Morton Goldberg, chairman of the board, Foundation Fighting Blindness Clinical Research Institute
· Mrs. Susan Greenberg, educator, the White House, 1993–2001
· Mr. John McCarter, chairman emeritus of the Board of Regents, the Smithsonian Institution
· Dr. Peter McDonnell, William Holland Wilmer Professor of Ophthalmology; director, the Johns Hopkins Wilmer Eye Institute
· The Honorable Michael Mukasey, eighty-first attorney general of the United States
· Mr. Jerry Speyer, founder, chairman, Tishman Speyer Properties
· In memoriam, David Rockefeller
Scientific Advisory Board
· Dr. Richard Axel, university professor, Department of Neuroscience, Columbia University; Nobel Prize in Physiology or Medicine
· Dr. Constance Cepko, professor of genetics and ophthalmology, Harvard University
· Dr. John Dowling, professor of ophthalmology (neuroscience), Harvard University
· Dr. Carol Greider, Daniel Nathans Professor; director, Department of Molecular Biology and Genetics; Bloomberg Distinguished Professor, Johns Hopkins University; Nobel Prize in Physiology or Medicine
· Dr. Julia Haller, professor and chair, ophthalmology; ophthalmologist-in-chief, Wills Eye Hospital
· Dr. Eric Kandel, university professor, Department of Neuroscience; director, Kavli Institute for Brain Science, Columbia University; Nobel Prize in Physiology or Medicine
· Dr. Joan Miller, chair, Department of Ophthalmology, Harvard University
· Dr. Jeremy Nathans, professor of molecular biology and genetics, neuroscience, and ophthalmology, Johns Hopkins University
· Dr. Joshua Sanes, professor of molecular and cellular biology; director, Center for Brain Science, Harvard University
· Dr. Carla Shatz, professor of biology and neurobiology, Stanford University
· Dr. Alfred Sommer, professor of epidemiology, ophthalmology, and international health; dean emeritus, School of Public Health, Johns Hopkins University; Albert Lasker Clinical Medical Research Award
· Dr. James Tsai, president, New York Eye and Ear Infirmary of Mount Sinai
Finally comes the end point of all this effort by so many immensely talented people: galvanizing the attention and focusing the efforts of those who can actually answer my Call. And here again, thinking big, going deep, and daring to risk the unknown has served the End Blindness campaign more than well.
In 2017, almost five years after we had first announced the prize, I was invited to speak to 4,000 members of the International Society for Stem Cell Research gathered at the Boston Convention Center—heady territory for a guy with no degrees in the sciences. But the first time I knew for certain that this critical part of the larger plan was working came three years earlier when I delivered the keynote address at the March 2014 plenary session of the Lasker/IRRF (International Retinal Research Foundation) Initiative for Innovation in Vision Science, led by John Dowling, professor of neuroscience at Harvard University and a member of our scientific advisory board.
Leading vision scientists from around the world, representing a variety of specializations, had gathered in a single room at the Janelia Research Campus of the Howard Hughes Medical Institute. To me, this was the chance of a lifetime to further my long-held belief that a cooperative approach among investigators “across all disciplines” will best get us to the ultimate goal. And I wasn’t going to waste it.
As with any great human endeavor, I told those gathered, our ultimate objective was transformative, not transactional. Our Call was for a complete and unified physiology of vision and neural function—one that recognized that individual investigations were the sine qua non of medical and scientific research, but not its finish line.
To end blindness, I said, we have to dream big first—we have to imagine a world in which we know everything about how vision works. The role of every muscle, every fluid, every tissue and cell type and construction, every gene, every protein, every inhibitory function, every neuron grouping, every chemical and electrical interaction along the neural pathway, every interaction among elements along the cascade of vision, every mechanism of natural repair, and every structural gap in natural repair. How nerve tissue grows and assumes its function. What mechanism—or lack of mechanism—inhibits damaged nerve tissue from regenerating, contrasted with what routinely happens beneficially when tissue in, say, the skin is damaged. Critically, we also have to know how all these elements function together. And then we have to make it all happen. We have to make the dream come true. Then and only then will I have truly fulfilled my Call.
I told the audience that I knew this is not the usual model applied to this sort of scientific inquiry. Physics models tend to start big and then bore down—think of Einstein’s Theory of Relativity or Heisenberg’s Uncertainty Principle—while medicine traditionally builds breakthroughs from the bottom up. But, I asked, can anyone here dispute the potential high clinical value that lies within a model such as I was proposing? Or the value of unlocking such answers? The value for prevention, the value for diagnoses, the value for treatments—the value most of all for those who might be able to do something they never rationally believed they would do again: see, be unblind.
I admit to holding my breath somewhat as I ended. At one level, I wondered if JFK’s call for a moon landing within the decade had left jaws agape at Cape Canaveral and elsewhere: What is this nutcase president thinking? At a deeper level, though, I knew that if my holistic, top-down iteration of the Call fell flat before an audience of all-star researchers, I was most likely headed back to the drawing board with no idea where to turn next. Happily—make that joyfully—that didn’t happen. My concept was very positively, even enthusiastically received at Janelia that evening.
One of the investigators in the audience did voice skepticism about the wisdom of substituting a physics-style model for the medical approach to vision. In response, I offered an analogy with automotive care. No sensible person would rely on a car mechanic who said, “I can locate and fix any problem—so long as it doesn’t involve the electrical system or the computer module.” A master mechanic can assess an
d repair across the entire system, just as particle physicists can model the existence of unseen particles or the influence of unknown forces.
I have no idea whether that was sufficient to turn the skeptic around, but if there is some insurmountable barrier standing between us and the complete and integrated array of whatever knowledge we might glean and gather, no one has yet shown that such an ultimate wall exists, theoretically or otherwise. Indeed, I would argue exactly the opposite: the wall is there only because we let it be. And that, as I wrote earlier, is maybe the greatest advantage of being blind: we recognize neither walls nor horizons. Our expectation is infinite.
I do know for certain that we are ever closer to the finish line of ending blindness. Whether we cross by or before December 14, 2020, or at some later date, is almost immaterial, especially now that Johns Hopkins University has matched Sue’s and my audacity with an audacious act of its own: the creation of the Sanford and Susan Greenberg Center to End Blindness, to carry on my tikkun olam even should the prize itself disappear from memory. Between the two—our prize and the new Johns Hopkins center—blindness doesn’t have a chance.
I may not be around to witness it, but before this century is out, blindness will disappear from the long roster of human injustices. And this, too, will be a giant leap for mankind.
The Final Word
I first met Sanford Greenberg many years ago. It was a cold and stormy night. We, however, were inside, at a party in honour of something or other, and we began talking. The subject of blindness came up, as it does with Sandy. We recalled the days before advanced reading technologies for the blind existed and how difficult it was then to be a student: Although you could have a braille typewriter, you had to rely on the kindness of strangers to read to you. And you certainly had to have an astonishing memory.
As it turned out, we’d overlapped as graduate students at Harvard in the 1960s. Sandy was still negotiating the sudden onset of blindness a few years earlier, and I had been a “reader,” someone who’d answered the call for volunteers to read to blind students. I don’t know why I did this—maybe the stories of my blind great-aunt had stuck in my head, or maybe it was payback for the pleasures of having been read to as a child—but there I’d been, reading away, though not to Sanford. He decided that because of this action I must be a Good Person, at least in a limited way, and we became Instafriends.
Hello Darkness, My Old Friend Page 24
