Stories at the confluence of people, planet and play

Fall

DR. JESSE LEAMAN, ASTROPHYSICIST, KNOWS THE COSMOS. It’s his turf, in a manner of speaking. So we don’t interrupt as he explains the outer reaches of the universe while wheeling through the University of Nevada, Reno’s Fleischmann Planetarium, where fellow journalist, Regina Revazova, and I have come to learn about the last 16 years of his life: such as it was, such as it is, and such as he hopes it will be.

Jesse seems happy to be here. He’s friendly and chill, and he’s duded out in a sharp jacket with a hoody, jeans, and two-tone oxfords. He wears his sideburns long. When he looks up, which he does often, light filters through the lenses of his glasses and illuminates his eyes, which are as blue as a a cloudless Eastern Sierra sky. I watch as he slaloms between the exhibit hall’s dioramas in his super-deluxe electric wheelchair by making a series of shrugs and bobs to trigger the infrared sensor in the head cradle. As he shoots by the moon, he explains it’s a chunk of our own Earth. He pauses by the model of the International Space Station, which he describes from bow to stern, as if he once tenanted the place. And then there is the black hole simulator – the gravity well — into which Jesse instructs us to drop ball bearings as he delights in mentally calculating their orbits as they criss-cross in ever-tightening ellipses around the black hole itself. And though the fate of those chrome marbles is inevitable — they will indeed succumb to gravity — seeing them spin through Jesse’s eyes, it’s hard not to think about how gravity altered the trajectory of his own journey.

East Stroudsburg, Pennsylvania, 1996

Lightning Leaman; that’s what his mates on East Stroudsburg’s soccer team called him. He stole balls from the forwards, out-sprinted and out-maneuvered defenders, and had deadly right foot. A lean 5-foot-7, with piercing blue eyes, and a remarkable shock of golden locks, the 18- year-old lived in his body full-time, and in his brain only when he had to; truth be told, he didn’t have to try too hard to excel at anything – even pulling top grades and honor awards.

Jesse had led his soccer team to a conference championship in November, and was voted to the All Star team, as much for his can-do attitude and natural leadership as for his athleticism. In just six months, he would graduate in the top five percent of his class. His future was well-scribed and exciting, combining science and sports: he had received a scholarship to the Florida Institute of Technology’s marine biology program, and in August he’d drive down to Melbourne. In a few years he’d be training dolphins and catching rides on the backs of killer whales at Marine World. At least, that was the plan.

Jesse had to admit that 1995 had been a good year.  All signs were pointing to an even better 1996.

And now, on New Year’s Day, the forecasters were calling for an enormous storm to truck in from Quebec, and this one would dump four feet of powder in the mountains. Jesse was a ski instructor at Shawnee, and he was all but guaranteed the best turns of his life since leaving the Austrian Alps, where he learned to ski ten years earlier.

But no one in East Stroudsburg was prepared for the ferocity with which that nor’easter drove down from Canada into the Mid-Atlantic on January 7. Later to become known as the Blizzard of 1996, the resulting gale-force winds pushed the two feet of snow into four-foot drifts that laid waste to the roads and paralyzed the region, from Philadelphia, to Manhattan, to Washington, D.C..

That was fine with Jesse. The schools were closed, and the skiing would be epic, once he could get to the resort. In the meantime, huge drifts surrounded his family’s house. He and some friends were hanging out on the upper outdoor deck, and they occasionally eyeballed the 15-foot drop to the snow billows below.

When Jesse said he was going to jump, no one tried to talk him out of it. Why should they? They didn’t doubt his ability to stick the landing, even when he announced he was going to an attempt a front flip. He’d make the right moves; that’s what Lightning Leaman did.

Jesse would later learn that when he hit the ground head-first, the impact obliterated his third, fourth, and fifth cervical vertebrae. His lungs collapsed from the impact. At Allentown’s Lehigh Valley Hospital, ER doctors reinflated his lungs, fused bone from his hip to his broken neck, and encased him in a halo vest, which they attached to his head by driving lag screws into his skull.

For now, he lay in the snow, preoccupied with the grim business of drawing breath. His family and friends urged him to hang on. When the paramedics finally arrived, Jesse let go, and his world went dark.

Winter

East Stroudsburg is one of a chain of a boroughs located near the Delaware River, where it courses by the hardwoods of the Kittatinny Mountains, en route to Schellenbergers Island and the Water Gap. Most Americans have heard of these peaks — the Poconos – a range better known for kitschy honeymooner’s resorts than for its soaring skylines. The town, which has of late become a bedroom community for Manhattan-bound commuters, was still smallish and tight-knit in 1996 – the kind of place that embraced its heroes and comforted its stricken. The locals made sticky buns for school bake sales, and the PTA played a vital role in the school district. And Jesse, the soccer phenom, the tennis player, the ski instructor was, by all accounts, one of the town’s shining lights.

So within a day or two of Jesse’s fall, the entire town seemed to know about it. Standing in line at the Weis Market, you’d hear people talking about the Leaman boy, and they’d cluck their tongues and shake their heads. Whether they said so or not, it was difficult not to compare Jesse to Icarus, the golden boy, who flew so high, and fell so far.

But Jesse was alive, if barely. As he lay broken and battered in the shock and trauma unit at Lehigh Valley Hospital, his airway crowded with a ventilator and with a feeding tube in his abdomen, his family stood vigil. And when he emerged from the fog, and was transferred to a private room, he began to understand the extent of his injuries. It wasn’t long before his mind strayed to the future — and what kind of future would that be, with his body mute from the neck down? Wasn’t the loss of arms and legs the definition of a quadriplegic? At least he he could breathe, drink and eat. His speech was unaffected by the accident. He could move his head with a kind of shrug. And when he was transferred to the Good Shepherd Rehabilitation Hospital in Allentown, Jesse worked hard to recover as much use of his body as he his injuries would permit.

Too little was known to draw any conclusions for the moment — he would soon engage in intensive rehab — and besides, everyone was optimistic. His father, Rick, wanted Jesse to resume his life as soon as possible. His friends and fans made him a banner, which hung behind his bed: “Help Jesse, Our Fallen Star.”

What no one doubted was that life would be profoundly different than its former course.

“I realized that I could vegetate in some institution or go home and start a new life,” Jesse said after the accident. “I was determined not to spend the rest of my life hiding away from society, surviving from month to month on welfare checks. Instead, I would try to live as normal a life as possible.”

“It’s like having a new life,” said his father, Rick Leaman in a 1996 interview with The Morning Call. “It’s a strange kind of rebirth.”

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Image by Brad Rassler

Spring

The whole history of science has been the gradual realization that events do not happen in an arbitrary manner, but that they reflect a certain underlying order, which may or may not be divinely inspired. – Stephen Hawking, A Brief History of Time

The abruptness with which Jesse traveled from able-bodied athlete to quadriplegic is nearly impossible to understand for those untouched by such physical trauma. William Bridges’ Transition Model is instructive here. To Bridges, change is a three-part process: Ending, Neutral Zone, and New Beginning. Bridges calls the middle phase the “Neutral Zone” because it’s the long gray trail between the poles, where our former lives haven’t quite ended, and the life to be lived hasn’t quite begun. And it was squarely in the Neutral Zone where Jesse dwelt during his months of rehab at Good Shepherd’s, not having wrapped his brain around what happened, and not entirely sure how his new life would play out.

And then a friend gave him Stephen Hawking’s A Brief History of Time. In Hawking, Jesse recognized a fellow traveler with a brilliant mind who didn’t allow his physical infirmities to impede his career; with wheelchair and voice synthesizer, and his intellect, Hawking became one of the world’s leading astrophysicists. Inspired by Hawking’s example, Jesse swapped his interest in marine biology for astronomy.

The community of East Stroudsburg rallied. A fund was established to cover some of Jesse’s medical expenses and to provide additional therapies. Money was raised for a wheelchair-accessible van. Jesse began to rebuild his life.

Like Hawking, he’d need basic tools to compensate for what he could no longer do with his body. While in rehab, he learned to use an electronic page-turner; voice recognition software, Dragon Dictate, enabled him to use a computer. “Calvin,” a voice-activate environmental control unit, dialed Jesse’s phone, adjusted the thermostat, switched lights on and off, opened and closed doors. An electric wheelchair gave him mobility, and an infrared-equipped head brace allowed him to drive his wheelchair by nodding his head.

Because of recently enacted federal laws, including the sweeping reforms of the Americans with Disabilities Act, Jesse would have both the services and support to return to school. In 1996 he attended his senior prom and rolled through commencement. The following year he attended East Stroudsburg University, where he completed his coursework with the help of note-takers and scribes.

Just 18 months after the accident, Jesse received a NASA internship from the American Association for the Advancement of Science at the Marshall Space Flight Center, in Huntsville, Alabama. He transferred to  the University of Maryland’s astronomy program, and received an internship  at the Goddard Space Flight Center.  He graduated from Maryland with a degree in astronomy, and was offered a job at Goddard.

A social worker at Goddard knew of Jesse’s interest in an advanced degree, and recommended University of California, Berkeley, for its strong astronomy program and the town’s support services for the disabled. Jesse was accepted to Cal’s doctoral program in astrophysics under a Chancellor’s Fellowship. He packed his bags in the summer of 2000 and headed west.

Summer

Say you were to drive out of East Stroudsburg High and hook a right onto South Courtland Street and merge onto the westbound lanes of Interstate 80. You pass two miles from Reno’s Fleischmann Planetarium after 2,600 miles, and another 300 puts you across the Bay Bridge into San Francisco.

But you stop just short of the Bay Bridge, and cruise up Berkeley’s University Avenue until it abuts the eponymous campus. Skirt the central campus on Hearst, and wind your way up Centennial Drive, and pull into the Space Science Laboratory, and that’s where Jesse spent the better part of the next eight years. It would prove a long, strange trip from East Stroudsburg to the town known as “Berzerkeley.”

“It was colorful, diverse; you could wear a hoody and no one gave you a hard time,” says Jesse, remembering his travels up and down Telegraph Avenue, with its vibrant street scene.

He was a researcher at the Bay Area’s Lick Observatory, and working for Alexei Filippenko, the renowned astrophysicist, and a team of colleagues, he took part in the creation of an algorithm to predict the rate of supernovae in the Milky Way. The team’s research won them plaudits from the scientific community, and Jesse used the data for his dissertation, and he got his doctorate.

He was accepted as a post-doctoral student at NASA’s Ames Research Center in Mountain View, California, and for the first time in his life, he was making a decent salary; not grandiose by Silicon Valley standards, but sufficient to purchase a wheelchair-accessible van and live comfortably in Berkeley.

His colleagues at Goddard had helped Jesse devise a rear-view monitor for his wheelchair to maneuver through the tight spaces of the office. While in California, Leaman improved the design by morphing his wheelchair into a mobile office, complete with computer workstation, air conditioning, and headlights. He named it the Gryphon Shield, and he found venture capital to develop the technology. The Gryphon Shield won an honorable mention in the Invent Now Challenge, co-sponsored by The History Channel and Invent Now, Incorporated.

Jesse hoped NASA would offer him a full-time job in 2010 after the postdoc drew to a close, but it was not to be, and Jesse’s NASA career came to an end. For the first time since the accident, the way forward was murky. The PhD path, for all its rigors, was at least structured, and the progression outlined, even prescribed;  the trials of finding payed work, especially as a quadriplegic, was anything but.

In 2011, the editors of the science journal Nature featured Jesse in a piece about the poor job outlook for scientists with disabilities. I remind him of the piece, with its statistics showing a 60% difference in the unemployment rate between science workers with disabilities and their able-bodied colleagues.

“Yes, I have a disability,” he says, and laughs. “But I’m on the same playing field as my peers. They have certain advantages in some areas. They may be able to trek up to the top of the mountain to look at the observatory. But when it comes to the data analysis, the teaching of the results, the presenting, and the communication of results, I’m on a level playing field with them.”

“All I’m asking for is a little confidence,” says Jesse. “A little faith. I’ve come this far. I can do a lot.”

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Image by Brad Rassler

“Here’s what we’re going to do,” Jesse says, and proceeds to tell us where to set up the cameras. Regina and I are in Jesse’s 700-square foot apartment, which he shares with his father, Rick, and his sister, Diana. We’ve arrived late, and Jesse seems slightly peeved as he instructs us how to best capture a shot of Diana hoisting him from his bed to his wheelchair. I notice he’s clipped his hair short, and trimmed his sideburns. He’s meticulously groomed, as always.

We didn’t solicit video-shooting advice from Jesse; he’s just exercising his directorial smarts for the short documentary we’ll make about him. He knows what he wants, and it’s his house. Who are we to deny him his vision?

Jesse didn’t chose a life in Nevada because of its superior infrastructure for the disabled, or because of the state’s public assistance programs. Jesse lives in Reno because he cannot afford to live in Berkeley, a city designed with the disabled in mind.  In 2011, with no job, he was forced to cut costs, so he and his father moved to Reno. Today his only income is from social security, and even with Reno’s relatively low rents, not much is left over after fixed expenses, and he barely gets by with social security disability benefits. Jesse sold the van he used in the Bay Area, and he relies on the Regional Transportation Commission’s paratransit service, which is limited in scope and service due to cutbacks at the agency.

George McKinlay, a former data coordinator at the Nevada Center for Excellence in Disabilities (NCED), considers the state and federal disability organizations rule-bound and mired in hierarchies more inclined to dictate terms than engage in conversations with its clients.

“I don’t believe in no government,” said McKinlay in an interview that took place in the fall of 2012. “That would be like believing in no civilization, in my book. But what the issue is these days is that the government is abdicating its responsibility.”

McKinlay bemoaned the government’s subservience to economic interests.

“You can look at productivity from the market perspective from the standpoint of being efficient, but I don’t think the market really truly defines our human experience.”

Three uncharacteristically fallow years have passed since Jesse’s stint at Ames — call it another Neutral Zone — although this one is befuddling, because there has been no clear path out of the woods. Jesse is having to reinvent himself yet again.  He contributes to research on gamma ray bursts, and uses Dragon Dictate to design new assistive devices in Google SketchUp. He’s dabbled with creating a crowdsourcing website for wheelchair users to rate the access-friendliness of retail stores, and has drawn up a conceptual design and business plan for a series of EV battery recharging stations across the Mojave, from Las Vegas to Reno. He’s also used SketchUp to create a stunning schematic for Elon Musk’s Hyperloop transport system.

“You know, I’m looking for a real career – high level, with lots of responsibility” he tells me in a recent conversation. “A major impact job. And those aren’t easy to come by.”

When I ask him what a major impact job might look like, he doesn’t mention astrophysics.

“Active research, where I can analyze the latest data, where I can have exposure to engineers to develop new technology – that would be perfect. And to have students to teach at the same time. That would be ideal.”

When asked whether he’s availed himself of local job-hunting resources, such as those facilitated by state assistance programs, Jesse shrugs.

“The problem with those agencies – those services — is that most often they’re intended for people who don’t have the training I already have,” he says. “They’re wonderful people, they do what they can, but it’s hard for them to even imagine what I do.”

When it comes to Nevada’s assistance packages, Jesse is running out of time. He’s currently 16 months into a two-year state-subsidized assistive technology program, yet he’s optimistic, never seems to lose his smile.

“He never lets himself get down,” says Diana, 24, of her brother. “Ask anyone. If you enter a room and talk to him for a while, you leave feeling, like ‘Wow. I can do anything, because I have no disability, and  there’s no reason to be upset.’ If somebody like Jesse can have a positive attitude every day…” she says, the implication being that able-bodied folks can, too.

Diana’s right. Even from that first meeting at the Fleischmann, Jesse’s can-do spirit has buoyed my own. Early on I asked his opinion about the planet’s life support systems. “Have we done ourselves in by overpopulating the planet?” I wondered.

“Life is very resilient,” Jesse said, smiling, as usual. “I’m pretty optimistic about the future of life on the planet Earth.”

Epilogue

A year after the interview, NCED came through with a laptop computer, which Jesse mounts to his Invacare wheelchair. And in the spring of 2015, after a four-year job search, he joined the University of Nevada, Reno’s Advanced Automation and Robotics Lab.