American Action Fund for Blind Children and Adults
Future Reflections Special Issue: The Federation in Partnership REVIEWS
by Susan R. Barry
Reviewed by Deborah Kent Stein
Coming To Our Senses
A Boy Who Learned to See, A Girl Who Learned to Hear, and How We All Discover the World
by Susan R. Barry
Basic Books, 2021
ISBN: 9781541675155
Available from Amazon, Kindle, audible.com, and bookshare.org
In the 1954 film The Magnificent Obsession, the beautiful female lead (Jane Wyman) is blinded in an automobile accident. Years later the young doctor who loves her (Rock Hudson) performs a miraculous operation that restores her vision. To the joy of her family and friends, Helen can see again!
Miracle cures like this appear so often in fiction and film that they are woven into our cultural imagination. Yet the case histories of blind people who gain vision through surgery tell a very different story. One of the best-known cases in modern times is a man described in an essay by Oliver Sacks, "To See or Not to See." Virgil, as Sacks called him, lost his sight in infancy due to cataracts. When he was in midlife, the cataracts were surgically removed, and suddenly Virgil could see. However, his sight proved of little benefit, as he could not interpret what he saw. He grew depressed, unable to live as a blind person yet incapable of using the sight he had gained.
MRI studies in people who have been blind from birth or early childhood indicate that the visual cortex is soon re-purposed to handle a variety of other tasks. Today it is widely believed that vision restoration in a person blind from birth or early childhood is likely to be unsuccessful after the age of eight. Similar findings raise questions about the effectiveness of cochlear implants for people who are prelingually deaf. People who receive implants after the first few years of life have trouble adjusting to their new hearing.
In Coming to Our Senses, journalist Susan Barry recounts the history of Liam, a young man with albinism whose vision was dramatically improved with the implantation of a device called an intraocular lens (IOL). She compares and contrasts Liam's story with the case of Zohra, a woman deaf from birth who gained hearing when she received cochlear implants. Both Liam and Zohra were in their teens when they had their surgeries; they had passed the age when they might be expected to reap serious benefits. Yet, through ongoing effort spread over many years, they both taught themselves to make use of the sensory information that was now at their disposal.
Liam was never totally blind. As a small child he could make out blurry images up to four feet away, though his acuity diminished as he got older. His mother insisted that he begin Braille and cane travel instruction in kindergarten, and he also learned to read large print. Liam learned to deal with his low vision from early childhood, and he never regarded his blindness as a tragedy.
In 2005, when he was fifteen, an ophthalmologist suggested that an IOL might greatly improve Liam's vision. After careful thought Liam and his mother decided he should undergo the surgery. Liam's perception of colors improved, as did his depth perception, and his lifelong nystagmus disappeared.
Nevertheless, Liam struggled to interpret what he saw. "He saw lines where one object ended and another began, where an object in front occluded an object behind, or where a shadow was cast on a surface," Barry writes. "He saw a tangled, fragmented world." As Barry explains, "understanding the lines and colors he saw required constant attention and analysis." The effort was overwhelming and exhausting.
Over time Liam gained a greater understanding of the visual world, and the effort grew less intense. Yet fifteen years after his surgery, he continued to piece together whole images by studying their components. Climbing stairs posed dramatic challenges. "All the while, when I move, the stairs are skewing and changing," Liam wrote, "and if you move around a staircase extremely, some weird stuff can happen." In many instances, such as taking buses and light rail, Liam continued to use his long white cane.
Like Liam, Zohra had to adjust to the hearing she acquired. She struggled to make sense of the sounds that flooded her life after she received her cochlear implants. With the help of her family, especially a devoted aunt, she worked every day to sort through the cacophony and to master the enormous complexities of spoken language. More than a decade later she was still learning new sounds and discovering new coping strategies.
Unlike Sacks's Virgil, neither Liam nor Zohra regretted undergoing their surgeries. Yet both of them acknowledged that adjustment to the new sensory input required unending effort. They rose to the challenge and approached their acquired senses with a sense of adventure.
Coming to Our Senses thoroughly dispels the myth of the miracle cure. Barry reveals the vast complexity of the mental processes most of us take for granted as we move through our noisy, dazzling, mystifying world.