A New York physician hasn't let a diagnosis of choroideremia stop him from fulfilling his dreams. The New York University School of Medicine instructor has even found a way to turn his experience into a business opportunity.
“When life gives you lemons, make lemonade.”
That’s a proverbial phrase aimed at encouraging optimism and a can-do attitude in the face of adversity or misfortune.
John-Ross Rizzo, MD, took that phrase to heart when, at age 15, he was diagnosed with choroideremia, a progressive and incurable disease from which he is losing his vision. And today, his lemonade stand is thriving.
Humor, he says, is the key.
“Everyone has plenty of negatives and we’re all dealt a unique place,” Rizzo says. “So, you know, we could spend our entire life focusing on those, but if we’re able to keep them at bay and use humor as a crafty tool I think we can do ourselves a good service and focus on our main goals.”
Maximizing the Mantra
Rizzo has followed his own advice. He’s a clinical instructor at New York University School of Medicine, and directs the Visuomotor Laboratory at the Rusk Institute of Rehabilitation Medicine. He also started his own company, Tactile Navigation Solutions, applying technology to help individuals with visual impairment.
“I’ve always been amazed by biology, and what’s impressive is that there are so many animals that are born with incredibly limited vision they would be diagnosed as legally blind in the animal world,” Rizzo explains. “And yet, they found ways to use other types of sensing to navigate quite successfully.”
Rizzo reasoned that he could take some of these senses that animals have perfected over thousands of years of evolution and apply them to people who have sensory deprivation. He recognized that the automobile industry had developed artificial sensory systems to help sense the environment for a car, triggering a signal to stop short if a pedestrian jumps in front. Those same artificial sensing capabilities, combined with a communication system that leveraged the sense of touch—the skin being the largest sensory organ of the body—could enable an individual to sense their environment if their visual system was incapacitated.
“I tied that model together and had it emblazoned in my mind 8 or 10 years ago,” Rizzo says.
That model became reality when he shared his ideas with doctors and scientists at NYU. They encouraged him to move forward with pursuing domestic and international patents, as well as working with NYU’s technology transfer office. After a whirlwind few years, Tactile Navigation Tools was born.
“If you see me give a talk, I tend to be quite explosive,” Rizzo laughs. “So TNT is a good acronym for me.”
Molded from Experience
Continuing to poke fun at himself, Rizzo says he has an MD in medicine and a PhD in falling. Nevertheless, he has been able to capture his insight into his lack of sight, and parlay that into products like the CumbaCane, a navigation aid that integrates peripheral detecting satellite arms; and the Eyeronman, a hands-free wearable vest with sensors and emitters to detect environmental obstacles.
“One of my core philosophies, and one of the things I talk about with people who have disabilities, is when you are set against a big disadvantage, whether it’s a visual disability or a physical disability, often times humans have to be incredibly resilient, and I call them super thinkers,” Rizzo says. “They have to think faster through certain situations.”
Rizzo says that overcoming daily challenges enhances the cognitive process. For example, if he’s in his routine he can facilitate chores from memory. But if he encounters new navigational requirements, such as attending a meeting in a new building, particularly at night, he has to develop a strategy ahead of time for accomplishing his goal without tripping or falling.
“I follow people with light colored clothing, and watch their head if it suddenly changes in elevation knowing there’s a step or obstacle there,” he says. “I miss low-lying obstacles, like floor is wet signs, so I’m constantly following people walking. And if they move to the left, I’m going to move to the left, even if I don’t know why. I try to have people come to my location, but it’s difficult being a physician-scientist and staying in one location.”
Not Holding Back
Rizzo’s condition hasn’t slowed him down; he just compensates when necessary. For example, he loves going to the gym to workout, determined to do whatever he can to keep himself in ideal conditioning and physical health because of his deteriorating vision. But going to gyms has posed great challenges. Low-contrast areas, like black weights on a black, rubberized floor, are easily tripped over.
“I’ve also hit my head on a barbell and cut my forehead,” he explains.
To counter that, Rizzo has created a small home gym environment with dumbbells and various fitness machines. He memorizes where everything is located, and places dark weights on a brightly colored floor.
He also praises his wife, a physician whom he met during his internship at St. Vincent’s Hospital, as making possible many of the things he’s able to accomplish. She’s also one heck of a Scrabble player.
“We do that to decompress,” he says. “She’s probably the best Scrabble player I’ve ever met, so playing against her is a tremendous challenge.”
Rizzo’s venture, Tactile Navigation Tools, is still in the pre-revenue, heavy research and development phase, but he says even at this stage the ultimate goal is to give hope to those who have been diagnosed with, or are navigating through the early stages of, vision loss. Many of those individuals are thinking, what’s going to happen 10 or 20 years down the line for me?
“When you take someone who is a pre-teen and you tell them they have this condition, they’re legally blind, and they’re trying to figure out how they will live their lives for the next 40 or 50 years, it seems like Kilimanjaro times 10,” Rizzo says. “It’s precipitous cliffs, and not being able to figure out how to fit your square peg into a round hole. And I think the installation of hope, building mobility solutions that allow individuals to have complete independence, that’s what I find most rewarding.”