The Struggles of Those Who Regain Sight and Hearing

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

Twenty years ago, I got a glimpse of how it feels to lack one of our vaunted five senses when I took a bonk on the head and lost my ability to smell. I grieved the loss — one that’s not uncommon after a brain injury or, as we’ve learned from grueling experience, a bout of Covid — and I searched mightily for advice on how to get it back. Months later, an improvised form of brain retraining (basically, sticking my nose into things and telling myself what I was supposed to be smelling) ultimately worked. When I smelled new-mown grass again for the first time, I cried.

Accustomed to having all my senses, I’d been desperate to recover one I had lost. So it seemed reasonable to me that anyone else deprived of one of the senses — especially the ones I considered most precious, sight and hearing — would do anything to get it back, too. Which is why it was a revelation to read, in “Coming to Our Senses,” about people who retrieved part or all of their vision or hearing late in life, and who not only didn’t like it, but who actually suffered and even died as a result.

There was Sidney Bradford, whose cornea transplant gave him sight for the first time at age 52. He was thrilled at first, writes the author Susan Barry, a neuroscientist and emeritus professor of biology whose first book was “Fixing My Gaze: A Scientist’s Journey Into Seeing in Three Dimensions.” But “over the following months, his mood shifted. Even with his new sight, he couldn’t read print or drive a car.” He had been cheerful and independent as a blind man, but he was sad and disabled as a sighted man. A year and a half later, apparently in part because of an overall decline linked to his new ability to see, he was dead.

There was Beverly Biderman, who began losing her hearing in childhood and was deaf for more than 30 years before getting a cochlear implant. New sounds of the world were intolerable, Barry reports; Biderman wrote about being so discombobulated that “I felt quite simply that I wanted to die.”

The experience of the author herself stands in contrast to these tragic tales. Barry spent her first 48 years cross-eyed and seeing the world essentially in monovision, through her dominant eye. Then, after a program of vision therapy taught her how to use both eyes together, she started seeing in glorious stereo. She loved her new sense of sight, she writes; a trip to the produce section, “with all its colors and 3-D shapes, could send me into a sort of ecstasy.” She was determined to find out why her euphoria about her regained vision — like mine about my regained sense of smell — eluded the Bradfords and Bidermans of the world.

The difference, she learned, was that she’d had a basic sort of vision throughout her life; her eye exercises had enhanced a sense that was already in place. For people who grow up without any sight or hearing at all, getting it late in life means they have no substrate on which to receive and make sense of the onslaught of new input.

Is it possible to get around these limitations? Yes, Barry writes, with a massive reorganization of brain circuitry. Her book focuses on two impressive 20-somethings who managed that feat. It’s hard to tell how typical they are — they’re portrayed here as preternaturally intelligent and focused, and they recovered their senses not as adults but as adolescents, when their brains were more amenable to reshaping. And Barry goes a little overboard in her admiration for their stamina, and in how their experience contrasts with her own discovery of stereo vision. Still, it’s inspiring to get to know these young people here.

Liam McCoy was born with albinism, with associated retinal problems that rendered him effectively blind. When he was 15 he had intraocular lens surgery that gave him 20-50 visual acuity, but very little understanding of what he saw. At first everything seemed to exist on a single plane — every line in the sidewalk could have indicated a stair, every stair could be just a line in the sidewalk. The world, as Barry puts it, looked “tangled, fragmented.” It took years of work to make sense of boundaries, shadows and depths.

Zohra Damji was born with diminishing hearing that led to total deafness by age 8. When she was 12, she received a cochlear implant. Afterward, “all sounds — voices, a motor, the rain — initially merged into one confusing mix.” Zohra had to learn from experience that, for instance, “the unnerving swish she heard when moving was the sound of her own clothes rubbing against her.” She had to deal with some surprises, too, like potato chips. They had always struck her as delicate, fragile, easily broken, and she had expected them to make a soft sound. She was amazed that they crunched when she chewed them.

The writing can be repetitive (the book reads like a series of essays that haven’t been rejiggered quite enough), and the explanations of brain circuitry can be hard to follow. But in telling the detailed stories of how Liam and Zohra learned to navigate the world using their new senses — stories that in many ways mimic the way able-bodied infants accomplish the same thing — Barry gives us insight into what it means to be human. “How we attend to the world,” she writes, “influences not only what we perceive but who we are.”