Sanford D. Greenberg, founder of the Sanford and Susan Greenberg Prize to End Blindness by 2020, relays his life after he lost his sight.

Mediaplanet: You began to lose your vision while attending Columbia University. Can you tell us what this experience was like?

Sanford D. Greenberg: I could tell you that I lost my eyesight while pitching in a baseball game. Or when boarding a subway car. Or while speaking on behalf of the presidential campaign of the young John Kennedy. Or while eating pizza with my roommates, Art Garfunkel and Jerry Speyer. Or during a final exam. I could say any of that. Yet none of that would matter.

What does and did matter are the feelings during the loss of my eyesight … the wanting-to-tear-myself-out-of-my-skin feeling … the cut-short and struck-down feeling … the inexplicable feeling of shame … the feeling that maybe ignoring it all would work. But it didn’t.

MP: What has helped you combat the adversity of vision loss?

SDG: I had to create  a life in my mind in which thoughts proliferate and assemble undisturbed by the constant flow of visual images. For sighted persons, the visual stream is like having the television on all day; the eye is drawn constantly toward the screen.

There are no hesitations or virtual restraints lurking in my brain’s wiring about where I can go. With no visual sensations to compete with and anchor my thoughts, I don’t have the same sense of boundaries or limits shared by sighted people. There is my mind…and beyond that the entire universe. Life in my mind has been a matter of survival for me, a source of determination to endure.

In an interview at the World Economic Forum, a German Financial Times reporter quoted me: "'Blindness,’ says Greenberg, ‘is not always a handicap.  In the light, others walk along the street and look at garbage containers, while in the dark I am able to think about what kind of enterprises I want to create.’”

 

 

MP: You have supported research to end vision loss for a number of years — what inspired you to become an advocate?

SDG: The call began for me in 1961, when I was 20-years-old: that no one should go blind. That has been my personal mission — to ensure that no one else has to undergo what I experienced when, midway through my third year at Columbia University, after developing a case of severe glaucoma, I lost my eyesight. So was conceived, while I was still in a hospital bed in Detroit, the imperative that has been me ever since. No one should have to go blind. And it was a promise I had made not just to myself, but to God. This promise to God helped me out of the slough of despond and on toward confidence in my ability to survive and prevail as a man. 

MP: Who has been there to support you?

SDG: My wife, Sue, is the center of gravity of the story of my life. I know that I have loved Sue since well before I lost my eyesight and after, when I was adrift; and until today. I do not love her because she stuck with me and was my support; I just love her. That is an affidavit from my heart.

But Sue and I have had plenty of heroic help along the way.

After I lost my eyesight, there was nothing my college roommate, Art Garfunkel, would not do for me: he walked me to and from classes; he read to me every day. He would refer to himself as Darkness, as in, “Darkness is going to help you today. Darkness is going to read to you from the Aeneid.” I suppose he meant that for me his voice was emerging from the darkness. He escorted me across the city; he bandaged my shins when I bloodied them, which was often. We were like brothers. He did not say anything about his help. What Art did, he did without having to be asked, and with vigor. I am indebted to him, a debt that cannot be paid because it stands outside of scale or measure.

My friendship with our college roommate, Jerry Speyer, has also been central to my life —and especially deep. Jerry was there for me during my campaign to recover my life without eyesight. That campaign continues, and Jerry is still with me, as he has always been — to this very moment. In 2008, Jerry delivered a commencement address at Columbia's Business School talking about a critical and memorable moment for the three of us after I returned to Columbia, newly blinded.

And with the love and support of my family: my grandmother, mother and father, my siblings, Joel, Ruth, and Brenda, and my children, Paul, James, and Kathryn; with the kindness so many people have spontaneously shown; the oxygen of freedom and rule of law that the United States gave my family; the education that in my darkness gave me material to help sustain my mind; the readers who made this education possible; the example of great men and women in my life and in history; with that imposing array of gifts; with no expectation of reciprocity, I was able to maintain my determination to endure.

I should like to mention two examples of great men and women in my life — extraordinary Canadians.

My dear friend Margaret Atwood, a person of surpassing intellect, a transcendent woman in history and in the arts, has been a source of continuous support for me over many years. When we first met at the World Economic Forum in Davos, Switzerland, she told me that she had read to blind students at Harvard.  This touched me deeply and began our rich and enduring friendship.

Bernard Shapiro, former Principal and Vice-Chancellor of McGill University and the first Ethics Commissioner of Canada, was a reader of mine when we were both at Harvard. An Olympian figure in education and public service, he took me under his wing in 1962 and remained so ever since. He gave me the caring and wisdom that was — and is — one of the primary sources of the confidence I have in myself.

MP: As the founder of the Sanford and Susan Greenberg Prize to End Blindness by 2020, can you tell what this prize entails?

SDG: On November 4, 2011, as Chairman of the Board of Governors of the Johns Hopkins Wilmer Eye Institute, with the support of its Director, Dr. Peter McDonnell, I made known for the first time a global effort to End Blindness by 2020.

On October 18, 2012, my wife, Sue, and I announced the establishment of a prize — three million dollars in gold, to be given to the person or persons who contributes most to ending blindness by the year 2020. Please see: www.endblindnessby2020.com.

The prize was conceived to shift the mentality in the research community from traditional focused specialization toward a more holistic cooperation — that means cooperation in investigation across the entire system of vision, from the entry of photons into the eye all the way to brain function.

Alongside the prize we have established what I think of as a call, a rallying cry. That cry — “End Blindness by 2020” — is frankly reminiscent of President Kennedy’s decision to set his challenge for placing a man on the moon within 10 years.

We hope to induce scientific leaders involved in research on vision and related neurological repair, as well as supporters who supply them with resources, to raise their heads, and look at vision and eye-brain issues beyond their individual projects — as essential and valuable as those tightly focused efforts obviously are.

If the world needs the blind to remind us that our lives could be worse, or we need the blind as a metaphor for something, then we need not worry about ending blindness. If we take blindness as an affliction handed down by God at the dawn of humanity, then we should not meddle. But if we believe that science has the right to meddle, as I do, and the obligation to meddle, and I do, then ending blindness should be somewhere near the top of the world’s to-do list.

The effort to put End Blindness by 2020 atop the world’s to-do list has been gathering wider support. Perhaps the best illustration involves the annual World Economic Forum in Davos, Switzerland, which I had been privileged to attend for a number of years. Aware of my efforts since our conversation in 2008 concerning blindness, Professor Klaus Schwab, founder and head of the Forum, elevated the End Blindness by 2020 campaign by making it a topic for its own dedicated panel session. In one stroke, this raised the campaign to the top of the world’s to-do list. Professor Schwab then expanded the structure of the panel, asking Susan Goldberg, Editor-in-Chief of the 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. There was a related performance at the plenary session by the famous — and blind — operatic tenor Andrea Bocelli.  National Geographic in its September 2016 cover story — “The End of Blindness,” labeled me “the man who put a bounty on blindness” and discussed the important role Art Garfunkel played in my life after I lost my eyesight.

The prominent television host Charlie Rose produced a program, led by Nobel Laureate Dr. Eric Kandel, to feature the technological advances in the treatment of eye disease made by guest researchers on several fronts: gene therapy, retinal chips, and stem-cell therapy. I was asked to discuss End Blindness by 2020.

Dr. John Dowling, Professor of Neuroscience at Harvard University, chaired a conference of the Lasker/International Retinal Research Foundation Initiative for Innovation in Vision Science at which I was asked to deliver the keynote address “The Judgment of Solomon.”

Senators Chris Coons of Delaware and Rand Paul of Kentucky (the latter himself an ophthalmologist) in a bi-partisan effort held a colloquy on the floor of the United States Senate advocating the value of the End Blindness by 2020 gold prize. Gold — because it is a reminder of the colour of the glorious and precious sunsets Sue and I enjoyed together as we walked along the Canadian shores of Lake Erie in the last days of my sightedness.

This new aspiration may have been a long time in coming, but I believe I now know the outcome. As we near a destination, our pace will quicken, won’t it — and the pace toward cracking the secrets of the eye-brain nexus is indeed accelerating. Much that is to be done lies ahead, of course, but no longer just for me, really, not Sandy Greenberg of Washington, D.C., formerly of Buffalo, New York. It is now becoming, or will become, I hope and pray, a journey for us.

MP: Since losing your vision at age 20, how has the research and innovation surrounding vision loss improved? What is required to continue the momentum to end blindness?

SDG: In 1961, the year I lost my eyesight, effective diagnosis and treatment were available, but not completely across the board. Today, it is likely that in the not too distant future we will master the regeneration of damaged optic and other nerve tissue. We will be able to arrest and reverse macular degeneration and other major disorders of the eye.

So, how do we end blindness? Fueled in particular by the new fields of molecular medicine and gene therapy, and given the accelerating advances in medical science, this objective will be possible.

My imperative seems a lot less crazy than in 1961. But this is the thinking of a dreamer, not a researcher.