Let There Be Sight
Growing up in rural Ohio in the ’50s, Roger St. John learned to feel the rain before the thunder and clouds rolled in. He could tell by the way the air shifted and tugged at him, swelling with that distinct, almost electric scent—sensations likely due to barometric pressure and ozone, the voracious reader would later learn. This keenness never left him.
St. John and his kid brother, Will (we’ve changed their names), knew trouble could be heading for them. A heritable condition robbed many of the men in their family of their sight. They had an uncle, a great uncle and several cousins with this disease, known as retinitis pigmentosa (RP). It’s typically diagnosed in young adulthood. In Will’s late teens, he started noticing symptoms. RP is not a halfway thing, Roger St. John says. “You will become blind. That’s almost certain.” St. John himself was well into his 20s by then and doing fine. “I thought I’d dodged a bullet.”
But some years later, he began to notice that driving at night was getting harder. An ophthalmologist confirmed the storm was coming for him, too.
St. John’s night blindness steadily worsened—walking into dimly lit restaurants became impossible without holding onto a friend’s elbow—and bit by bit, darkness blotted out his periphery. His field of vision gradually narrowed to a smaller and smaller pinhole. Ten years after the first onset of symptoms, he was totally blind.
But as St. John, 73, explains this now over the phone, there’s not even a hint of sadness in his voice. Sure, when he learned his diagnosis in his early 30s, he did a kind of bucket list, traveling to China and boarding a bus tour across North America, “all the usual tourist traps, the Grand Canyon and that kind of stuff,” he says.
But as he gradually lost function in the ensuing years, he didn’t so much stop doing things as just learn how to do things differently.
“I volunteer to drive for my wife, but she doesn’t take me up on it.”
St. John relies on smell, texture and timing when he cooks—which he does often, and with pleasure. (He used to teach a Chinese cooking class.) When he’s out and about, his golden retriever helps him navigate, but St. John gets around fine without his four-legged guide when they’re at home. When they go out to the back yard, subtle shifts in the ground orient St. John. When it’s time to head back inside, the sounds bouncing off the brick and wood along the back of the house tell him exactly where the door is.
If someone walks past him on the street, he knows it. If he goes someplace new, he can tell that there’s, say, a bank of cabinets in the room and point to them. He shrugs all of this off: Blind folk don’t hear better—they just pay more attention, he says.
St. John is a gadget guy. For a time, product testing of assistive technology devices was part of his job. He followed the evolution of screen readers in the 90s as their robotic voices became increasingly more intelligible. Now, in his retirement, St. John uses the text-to-speech function on his Mac every morning to catch up with emails and take in the news as well as pleasure reading. His favorite subject is anthropology—and anything sciencey, really.
Several months ago, when a University of Pittsburgh/UPMC research team called St. John to invite him to participate in a new study, he gladly signed up. He then read about the clinical trial in The New York Times. In that trial, an international team of researchers, led by Pitt’s José-Alain Sahel, chair of ophthalmology, partially restored vision to a blind man in Paris. St. John then read other articles about where his next adventure would take him: into an emerging field called optogenetics, which the researchers used therapeutically to restore vision. These optogenetic tools are inspired by nature—using engineered proteins that glow like those in bioluminescent algae. (See “Out of the Dark” for more on this technology and the first breakthrough therapeutic case.)
St. John’s adventure started with a shot in the eye, he says—but no worries. There was a very effective numbing agent involved. He chuckles. “They asked my wife if she wanted to come and observe, and she declined.”
As we chat on the phone two weeks after the injection, he gives me his short version of this very complex technology, more than a decade in development and now in use with its first handful of study participants, including St. John and other Pittsburgh volunteers:
In RP, the photoreceptor cells (called rods and cones) are completely destroyed. So this injection uses a harmless virus to deliver specially engineered genetic material right to the ganglions, a smaller group of cells that are still alive and kicking and attached to the optic nerve. And in turn, he says, “that genetic material prompts the ganglion cells to start producing a protein that is light sensitive. … Then, [the ganglions] can respond to patterns that appear on the retina.”
The effects are subtle, though, which is where the gadget part comes in. A special set of glasses equipped with both a camera and a projection system amplify light for these repurposed ganglion cells. In this early phase of product development, St. John’s glasses are 2-and-a-half inches thick, maybe 3 inches high and span the entire width of his face.
It takes a couple of weeks for the virus to attach to the cells, and several weeks longer for the protein-production to get up and running, he explains.
And then over a period of months, the brain must learn to see anew with this wildly innovative workaround.
“Training-wise,” he says, “I will do all kinds of things: walking around, looking for doors and marks on the floor, looking for patterns on a screen.” He was doing plenty of the latter already when we spoke in July—hours-long sessions of baseline measures—while waiting for the injection to kick in. There’s lots of prompting: Where is the square? Which direction is the letter C facing?
“I call it making me lie. All my responses are total guesses.”
St. John is optimistic that in time, he won’t just be “lying” anymore, and he’ll be able to see certain things as the patient in Paris did. But he’s also a realist. Using these genetically modified stand-ins for his former photoreceptors, things are going to look pretty low-res.
But that’s okay.
“I’m doing it,” he says, “because I’m hoping this might make a contribution to future developments that will work even better.
“And I want to know what’s going on with this whole thing.
“I’m very curious scientifically.”
St. John’s favorite subfield of anthropology is cultural anthropology, the study of how various peoples adapt to their physical environments and devise their own cuisine, kinship systems, ideologies and technologies. I point out that, in this moment, he’s a case study of the latter, and he laughs. “I’d never considered it!”
Cultures around the world treat blindness differently. Musicianship is often a big part of it—the blind bard Homer was thought to have sung the Iliad and the Odyssey. And in some places, blindness is considered a sort of tradeoff for clairvoyance, St. John notes; so I have to ask if he has any experience with that.
“Sure,” he says, “That’s a very nice outfit you have on.” I laugh into the phone, slouching in pandemic athleisure.
There is a big-picture sense, though, a long view that rallies St. John as he donates hours upon hours of his time, his effort and his blood, urine and tear samples in the name of science.
“I’m not doing it because there’s some deficiency in my life experience,” he says. “I’m doing it because I want to help.”