Love and First Sight(65)

The third (and the only hopeful) case study I reviewed in depth was the book Crashing Through by Robert Kurson. It chronicles the story of Mike May, who is to my knowledge the only living person who had an operation to gain eyesight after living his life in total blindness and also the only person I learned of who had a successful transition, psychologically speaking, from total blindness to (some) eyesight. This can probably be attributed to his work ethic and attitude, but also, from a neurological perspective, it should be noted that May didn’t lose his eyesight until age three, suggesting the possibility that he experienced some development of the visual cortex that could have aided him in his later adaptation to eyesight.

Will’s procedure is based loosely on the one that May had: a stem cell transplant and then a cornea transplant.

The most extensive collection of case studies on this subject can be found in a book called Sight Restoration After Long-term Blindness: The Problems and Behavior Patterns of Visual Rehabilitation. It was written by an Italian named Alberto Valvo. I’m indebted to my assistant, Lisa, for tracking down a copy of this rare book at a university library.

According to Valvo, there are fewer than twenty documented cases of adults who went from total blindness to sight ever recorded in human history. Valvo says that they universally experienced depression and were often tempted after gaining eyesight to harm their eyes (or themselves).

I’m deeply indebted to all these authors, pioneers, and scientists, therefore, for giving me a framework for what it might be like for Will to gain eyesight as a teenager.

I also learned a great deal about the way the brain develops in a blind person from Blind Vision: The Neuroscience of Visual Impairment by Zaira Cattaneo and Tomaso Vecchi. Both of them were also kind enough to exchange several emails with me as I attempted to develop my understanding of the way Will would process the physical world—three-dimensional space, the imagination of color, etc.—without ever having seen it. They also insightfully pointed out how difficult it would be to find patients like Will to study, because people born with total blindness are exceptionally rare. Most people with visual impairments retain some of their eyesight, such as the ability to perceive light or some color, or they became blind after at least some development of the visual cortex.

Since the pioneers in this field, including Cattaneo, Vecchi, and Valvo, were all Italian, I gave Dr. Bianchi a similar ethnic heritage in their honor (although it should be noted that his grasp of the English language is far inferior to that of these scientists).

The techniques that Mrs. Chin taught Will—his ability to navigate and function in a sighted world—I myself learned through the thorough text The Art and Science of Teaching Orientation and Mobility to Persons with Visual Impairments by William Henry Jacobson.

As far as the writing and voice of Will, I tried to gain some understanding of the mind of a person with a visual impairment through memoirs of vision impairment, including the hilarious Cockeyed by Ryan Knighton, the haunting Planet of the Blind by Stephen Kuusisto, the poetic Touching the Rock by John Hull, the inspiring Touch the Top of the World by adventurist Erik Weihenmayer, and the wise As I See It by blind dynamo Tom Sullivan. I also enjoyed the classic thought-experiment novel Blindess by José Saramago.

I was also informed by a great many movies and documentaries about vision impairment, especially The Eyes of Me (which was particularly helpful in how it showed students transitioning between schools for the blind and mainstream schools and vice versa), Going Blind, Proof, Blindsight, and of course the Pacino classic Scent of a Woman.

The concept of the tyranny of the visual was first proposed by Marshall McLuhan in the 1962 book The Gutenberg Galaxy.

As a general note, I wish to remind the scientifically minded reader that even “normal eyesight” can sense only visible light, which itself occupies a tiny sliver of the electromagnetic spectrum. Just as a dog whistle makes a sound human ears can’t detect, the vast majority of electromagnetic wavelengths—including those used for Wi-Fi, X-rays, radar, cell phones, AM/FM radio, and broadcast television—are invisible to humans, despite occupying the same spectrum as visible light. So even eyes with twenty-twenty vision are blind to well over 99 percent (assuming a linear scale) of the electromagnetic energy passing through us each and every second.

Yet even just that fraction, which we are capable of perceiving with not only our eyes but with other senses as well, contains an infinity of observable phenomena. I was inspired by that fraction to tell this story—most of us are so caught up in our personal narratives of what we have versus what we want, our little worlds of selfies and how many likes they get, that we fail to notice the beauty around us, the infinite beauty that we possess the ability to appreciate.

And although I did extensively research visual impairment and endeavor to represent it accurately in this book, I want to stress that this is fundamentally a story about how we as human beings—both the sighted and the visually impaired—sense and experience the world. It’s not meant to be a scientifically accurate description of vision impairment or a textbook on the neurological development of the visual cortex. So I hope people with vision impairments will forgive the artistic liberties I’ve taken as a storyteller.





ACKNOWLEDGMENTS


Thanks to Ashley for encouraging me through many years of working on this, my first novel. Her enthusiasm is caffeine for the soul. Let’s keep dating.