Stay-Focused: A Life-Changing Experience

Emily Seelenfreund is unusual for someone her age. Not only does she get about in a wheelchair, but the sophomore at the Hudson School in Hoboken, New Jersey, is confident, independent-minded, focused. Even more unusual, for a person of any age, Emily is a certified scuba diver.

One day in March 2004, Emily, who has a diagnosis of osteogenesis imperfecta (brittle bone condition), was finishing up her swim team practice at a pool in Jersey City, New Jersey, when she noticed two men had joined her swim coach, Trisha Yurochko. They wanted to know if Emily would be interested in going with them, Trisha, and another girl with a disability to the Caribbean for a week to learn how to scuba dive.

“It sounded cool,” Emily says. “I’d heard of scuba diving, but I’d never thought of really doing it. The guys were really nice.”

Emily Seelenfreund (left) learns the ropes from diving instructor Richard Smart.

The guys were Roger Muller and Richard Smart of Stay-Focused, a new organization, then in its first full year of operation, specifically designed to give young adults who use wheelchairs “the experience of a lifetime” while learning how to scuba dive in the warm, crystal clear waters surrounding Grand Cayman in the British West Indies. Emily’s parents, Rachelle Grossman and Bob Seelenfreund, wouldn’t have to pay for any of it, as long as she went on her own.

“Emily was fine, but I was scared to death!” says Grossman. “I think because I knew Trisha was going and a doctor would be there, it would be fine. Bob wasn’t nervous at all.”

And so in late June, Emily and Chelsea Bilodeau (another swimmer), found themselves jetting to a foreign country to learn how to scuba dive.

“I was a little nervous,” Emily confesses about her first dive. “The pool sessions before you actually go into the sea are all about facing up to your fears. The first breath underwater-when I saw a fish swim nearby-was earth-shattering. I was thinking, ‘Wow, I’m breathing under the sea!’ It opened up a whole new world for me. It was definitely the coolest thing I have ever done.”

Stay-Focused’s Founder and President Roger Muller believes the program will give young adults like Emily and Chelsea the courage and taste for many more adventures.

The Great Equalizer

Muller came up with the idea of Stay- Focused on a scuba diving trip with his older brother Bobby. A veteran of the Vietnam War, Bobby Muller (a former United Spinal Board member) is co-founder of the Nobel Prize-winning International Campaign to Ban Landmines and, in spite of a paralyzing injury sustained in combat, is a seemingly tireless pursuer of solutions to some of the world’s thorniest problems, including, lately, terrorism in the Middle East.

“Bobby has a lot more energy and drive than most people who aren’t paralyzed,” Roger says, “but pushing a chair all day, every day- being limited in where you can go by where the chair can go-would take a toll on anybody.”

Roger was witness to moments most others didn’t see, when the physical strains of Bobby’s disability wore him down. Underwater, however, it was a different story. Roger noticed his brother was like a new person, as free and mobile as any scuba diver. His injury was suddenly not a consideration. “I was really struck,” Roger says, “by how good it made him feel.”

From that insight into the effect of the sea on his brother’s spirit, Roger started to think about what scuba diving might do for other persons with mobility issues. After years working as a recruiter and career coach, eventually for the management and technology consulting firm Booz Allen Hamilton (“My job was to assist MBAs in managing their careers,” he says), Muller was looking for a new challenge outside the corporate world. His background in academia (he worked in MBA admissions and placement at The Amos Tuck School at Dartmouth College, and MBA placement at Kellogg at Northwestern University before moving to Booz Allen) naturally led him to think about young people as the ideal beneficiaries of his insight.

“Water is the great equalizer,” Muller says. “When disabled kids do other sports- basketball, track and field, they’re still dealing with their disability. With scuba diving, they don’t have to think about it anymore. They have the same advantages and disadvantages as anyone else. Underwater, they’re totally equal in ability to anyone.”

Roger runs the operation out of an office generously provided by Booz Allen in midtown Manhattan. Booz Allen’s employees also donate frequent flier miles to enable Stay-Focused to give participants free round-trip airfare. More of his time is spent thinking about fundraising than he would like-it costs the nonprofit about $5,000 per student-but he makes all the trips and goes on every dive.

“Roger and Richard really follow through,” Grossman says. “They encourage the kids to stay in touch. They’re like buddies. They really care about their kids.”

Richard Smart, one of Stay-Focused’s diving instructors, is the organization’s only employee. In addition to his instructor duties, Smart is also the Program Manager, who spends the time between programs overseeing all diving-related matters, promoting the organization, and serving as the organization’s face in the Caymans, where he now lives. During the programs, which run once in the March/April time frame and two or three times during the summer to accommodate school vacations, Smart runs his students through seven dives- four to complete their PADI (Professional Association of Diving Instructors) open water certification, and three for fun.

“These kids are in a lot of ways easier than an able-bodied person,” Smart says. “They don’t show fear. They learn all the same skills an able-bodied person would learn. We don’t bend any rules for them.”

Each dive is also attended by one of two doctors, JenFu Cheng, MD, of Children’s Specialized Hospital in Mountainside, NJ, and Assistant Professor at the University of Medicine and Dentistry of New Jersey (UMDNJ), and Casey O’Donnell, DO, of the Kessler Institute for Rehabilitation and UMDNJ, who alternate sessions.

“Because many of our kids have no sensation in the lower part of their bodies,” says O’Donnell, “they’re more susceptible to injuries like animal bites. There’s the risk they might get stung or scraped and not know it, which could lead to complications.

“Many of the kids self-catheterize,” O’Donnell continues. “Every thirty-three feet down, the pressure increases another atmosphere. You don’t feel it, but that puts pressure on the bladder as well, so we have to monitor them. Fortunately, our presence has been mostly precautionary-nothing too serious for us to attend to outside of a few minor cuts and scrapes.”

On shore, the student-divers also attend an academic portion of the program to deepen their experience underwater and beyond. They learn about the marine life they are likely to encounter on their dives, discuss what it means to “stay focused,” and assign motivational words to the acronym DIVER.
Trisha Yurochko (Marketing Coordinator and Head Coach of The Lightning Wheels at Children’s Specialized Hospital in Mountainside, NJ, who volunteers her time to Stay-Focused) notices the difference the program has made in the kids she has helped select for it. “Sometimes the effect is dramatic and sometimes it’s subtle. One girl who was very shy and deferential to her parents before she went, and who was quiet for most of the program, really opened up at the end. Back home, she started getting involved socially and putting more of herself out there. That was a noticeable change.”

“Then there was a girl who was outgoing and active already before experiencing the program. Afterwards she was invited to join the Junior National Team for competition in Australia. She came to me, apparently very troubled, and said, ‘Trisha, I want to go to the competition but I can’t because I need to stay focused on school right now.’ That was such a mature decision for her to make. I’m not sure she would have made a decision like that before the program. All of the kids I’ve seen go through Stay-Focused have grown in some way.”

“There’s a reason I zeroed in on this age group,” Muller says. “All kids at this age wrestle with a lot of issues. Our kids need to manage their disability on top of all the other things kids worry about. What we try to teach them is just what the name of the organization says: ‘Stay focused. Forget the distractions. Keep your eye on the prize.’”

Muller points out Stay-Focused’s logo, featuring a prominent blue sea turtle. “Have you ever seen how sea turtles move on land?” he asks. “Their heavy shells and flippers make it difficult for them to move around easily. But under the water, they’re amazingly agile, like fish. I thought, ‘Wow! What a perfect metaphor for our kids!”

For more information about Stay-Focused, to make a donation or to recommend a candidate, you can visit their web site at Stay-Focused.org.

Chris Pierson edits Orbit.