A beautiful mind

By Mark Baker | Awards, Lifestyle | |

This is the moment when Alex Ghenis became a quadriplegic, the moment when his life changed forever. Who would have guessed it might have changed for the better.

Alex Ghenis with his mother, Marcy  Schein.

Alex Ghenis has made remarkable strides recovering from a cycling injury that left him paralyzed from the chest down. In many ways, Alex’s yearlong journey through physical and emotional trials have left him stronger in spirit and a more focused young man than he was a year ago. His determination has inspired those around him including his mother, Marcy Schein. (Brian Davies/The Register-Guard)

A few seconds. That’s all it was. That’s all it takes. A bicycle. A boy. A jump. Some air. The earth.

A sickening crunch. Then stillness.

Although he couldn’t feel any pain, couldn’t feel anything at all, 16-year-old Alex Ghenis knew something was seriously wrong one year ago today when he saw that his arms were not where his mind thought they were.

“I can’t feel my body! I can’t feel my body!”

But he could still scream.

Alex was an ordinary teenage boy with ordinary teenage problems when his mountain bike flew off a dirt jump and into the air at San Jose, Calif.’s Calabazas Park on July 4, 2004. Having just finished his sophomore year of high school, he was a `B’ and `C’ student who worked in a bike shop and liked to hang out with his “biker” friends. A child of divorce, Alex was not particularly motivated in his life. He lived with his father and older brother in Menlo Park. He was having issues with his father, just as many teenage boys do. But now he was about to find out what life looks like when your mind is all you have.

When you’re a “quad.”

When all you want to do is kill yourself because there’s nothing left to live for.

When you have to rely on someone else to feed you. To dress you. To take notes in school for you.

But out of this darkness, out of five hospitals in six months, the boy who left the earth for a few seconds and then returned came back a man simply by colliding with it; by breaking his neck, even though he was wearing a helmet, as he always did.

Alex, now 17 and a student at South Eugene High School, is one of an estimated 11,000 Americans who injure their spinal cords in car accidents, acts of violence, falls and sports-related activities every year in the United States and face not only a new life of challenge and courage, but mountains of medical bills.

He’s a C-5 quadriplegic, meaning he broke the fifth vertebra in his spinal cord, paralyzing him from the chest down.

Pretty much estranged now from his father in California, Alex lives with his mother, Marcy Schein, and his stepfather, Dr. Marc Binder, in Eugene’s southwest hills. He moved here in January and just finished his junior year.

Schein and Binder, who both have disabilities of their own that have forced them out of work, spent $16,000 remodeling their Hawkins Lane home so that Alex’s $24,200 wheelchair could roll through the front door and into what used to be Binder’s den, and down the hallway and into a shower built just for him.

Initially filled with the anger and sadness that paralysis victims experience, Alex has now decided to live life again. He’s embracing life with an unusual maturity for a teenager, say those who know him and others who have met him during this past year.

His story is remarkable, a 365-day journey in a life that has, in many ways, improved since he lost his body and found his mind. He can no longer ride his bike or soar through the air. He can only think, and Alex has been doing a lot of that lately.

“There’s been a lot of stuff going on inside my head lately about the whole situation,” says Alex, sitting in South Eugene’s cafeteria in the middle of May. “I really don’t think I’m anything special. I just broke my neck and went through a lot of crappy situations. But I don’t really consider not giving up an achievement.”

What other choice do you have, Alex?

“I don’t know,” he says. “I don’t even know what giving up would be.”

`He’s really gotten it’

With soulful brown eyes, thick brown eyebrows and a bushy head of dark brown hair, and sideburns that don’t seem to want to be cut anytime soon, the 6-foot-tall Alex has accepted that he isn’t likely to walk again.

He now knows that fulfillment will not come from his arms or his legs, but from his head. He doesn’t want to do bike tricks anymore. He wants to be a journalist or a politician, someone who can foster change in this world. He’s landed a volunteer job working in U.S. Rep. Peter DeFazio’s Eugene office this summer. He’ll work DeFazio’s booth at the Lane County Fair and learn about politics. Maybe he’ll find a way to further the research done by the late actor Christopher Reeve, who suffered a spinal cord injury, he says.

“He’s really gotten it, that information is power,” says Binder, his stepfather, who retired early from his career as a gastroenterologist a decade ago after being diagnosed with multiple sclerosis.

Called “Grande” since the seventh grade by his closest friends because he liked to describe things with the Spanish word for “large,” the soon-to-be high school senior was an experienced mountain biker who had been going to jump parks for years and learning tricks on his bike. Then came the accident.

It seemed much like all of the other jumps he had performed, but this time the front wheel of the bike with the Zanotti frame he had rebuilt, in the Palo Alto bike shop where he worked as a part-time mechanic, landed funny and flipped him over the handlebars and straight down onto his head.

He spent 10 days at Santa Clara Valley Medical Center on a constant morphine drip with a halo ring that went through his skin and against his skull to stabilize his neck. On July 14, 2004, he was flown to Craig Hospital in Denver to undergo an experimental treatment that might have repaired the damaged cells in his spinal cord. After discovering that Alex had some sensation in one foot, he was deemed ineligible for the treatment and flown to the Pediatric Intensive Care Unit at Kaiser Permanente Medical Center in Oakland on July 16. He underwent a 12-hour spinal fusion on July 22 to stabilize his neck, which eliminated his need for the halo.

On Aug. 6, Alex went to Shriner’s Hospital for Children in Sacramento where he underwent rehabilitation until returning to Palo Alto High School in late November.

But he only lasted four days.

Distraught and having trouble readjusting, Alex found himself on a 72-hour suicide watch back in the hospital.

He eventually returned to Shriner’s in Sacramento, where he had bonded with other paralysis victims his age.

His relationship with his father, Paul Ghenis – who did not return a phone call for this story – was deteriorating. Long-term, Alex was looking at living in a foster or convalescent home.

Then his mother and stepfather in Eugene arranged for him to move here in late January.

“Marc and I got busy up here because there was no way he was going to a foster home,” says Schein, who was diagnosed in 2001 with fibromyalgia, a fatigue and pain disorder. She also has had three surgeries related to an obstructed bowel since then but hopes to return to her position as an adjunct professor at the University of Oregon’s School of Business after Alex graduates from high school next year.

Alex was covered under his father’s health insurance policy, but Schein and Binder could not move him to Oregon until they were sure he’d be covered here, too. Binder was able to get Alex 50 percent coverage under Binder’s insurance policy for attendant care, and 80 percent coverage for equipment and supplies.

Paul Ghenis’ insurance still covers all hospital and doctor visits for Alex, Schein and Binder say.

But when Alex turns 18 in May, he’ll most likely have to use government assistance, such as Medicaid and Social Security, to help pay for attendant care while in college. His parents are trying to raise funds to help supplement the government aid.

“We consider ourselves pretty lucky,” Schein says. `We’re in a lot better shape than a lot of people. (Marc) and I are two educated people with a lot of advantages. What happens to a kid who doesn’t have that?’

`I’d be like a king’

Alex is asleep. He’s dreaming. He sees her. She’s cute. He smiles. She smiles back. But he can’t get up, can’t get out of bed. He needs help. Suddenly, he’s standing up and talking to her. In his hospital gown. He’s telling her about his disability.

Alex might not be able to get out of bed on his own, or even sit up in bed, but he can still dream. And he’s often walking in his dreams, usually with a limp, he says.

His room at home looks like a typical hospital room. He sleeps in a special bed with an alternating pressure mattress that tilts the bed from side to side. There’s a TV up in the corner, a bedside table full of medications and, below the TV, a special waterproof chair that hooks up to a sling that his attendants from New Horizons Home Care Services – a Eugene in-home health services company – drop him into every other night so they can roll him into the shower.

Alex’s mornings during the school year typically begin at 6:30 or 7 a.m., when he is awakened by one of the attendants who then begins 90 minutes of range-of-motion exercises on his body.

On the morning of May 11, Daniela Salazar, a certified nurse’s assistant from New Horizons, lets herself in the front door and wakes Alex to begin working in the dark room to reduce the spasticity in his legs, a common ailment associated with paralysis.

Salazar begins by taking Alex’s left foot and pushing it back as it vibrates and shakes uncontrollably. His feet rest in Styrofoam because he has pressure sores on his heels. His left big toe is bandaged because of an in-grown toenail, another common ailment of paralysis. Salazar pushes his left leg up to a 90-degree angle and holds it for about 15 or 20 seconds as Alex grunts and moans.

Above his bed is a poster with a Rocky Mountain Bicycles logo in the middle. The poster has been signed by professional bicycle racers. “All the best – but the best is yet to come,” says one note. As Salazar works on Alex’s right leg, it won’t stop shaking, alarming him. Finally, it settles down with Salazar’s persistent massaging.

Salazar drains the bag that holds Alex’s urine and then asks if he’s ready to get dressed. She pulls his socks on, slips his underwear over his feet, and then up and under the sheets. She then pulls his pants up and they joke about her leaving the bedsheet stuck in them so it drags behind him at school.

“That’d be cruel,” she says.

“No, it’d be awesome,” Alex says. “I’d be like a king.”

Salazar brings Alex’s wheelchair up to the bed, raises the bed and pulls Alex’s legs to the side. She slides a board under him and puts her full weight under his body to lift him into the chair as his head and upper body fall helplessly onto the foot of the bed. Alex laughs softly. She lifts him back up and swings him into the chair. She puts his shoes on. Alex whirls around to check himself in the mirror as Marisha, the family’s arthritic yellow lab, hobbles in.

After reading the newspaper – a daily ritual now for Alex – and gulping down some 20 different pills with apple juice, he’s ready for cereal before heading to school. Alex usually takes the school bus, which raises him in by a hydraulic lift to join other disabled students, but on Wednesdays he’s driven by Sam Hazelett, a 28-year-old yoga instructor hired by the Eugene School District to take notes and help Alex at school. Sam drives him to school in the 1989 Chevy Astro van, which also has a hydraulic lift, that Binder found for $3,000 before Alex moved to Oregon. It’s the only way he can be transported anywhere.

Straight A’s on a broken spine

“It’s tricky,” Alex says of making new friends in a new place. “I’m kind of shy when it comes to introducing myself. But I’m learning to challenge myself that way.”

Perhaps the biggest challenge, though, is for South Eugene’s other 1,700 students. `Mostly, people avert (their gaze),’ Alex says. “They don’t really stare.” Or they assume that because he’s in a wheelchair, there must also be something wrong with the one part of him – his mind – that still functions normally. Instead of talking to Alex, they’ll address Hazelett. Or they’ll say, “HOW ARE YOU TODAY?” thinking Alex must be hard of hearing.

But some have discovered that there’s nothing wrong with Alex at all, despite that huge, deep pink scar on the back of his neck.

`When I heard about his accident, I thought, `That doesn’t happen to people I know,’ ‘ says Kendra Northam, a South Eugene student who met Alex a couple of years ago at the University of Oregon’s Summer Enrichment Program -where Alex will be a junior counselor this summer – for gifted and talented youths. “I still just see him as Alex.”

In Tsuki Oda-Riddell’s pre-calculus class on the morning of May 19, Sam places a textbook and a calculator in Alex’s lap. Sam then opens a notebook and begins taking notes. As Oda-Riddell draws parabolas on the board, she asks the class of 28 students how to solve a problem.

“Plug in 2 for x or 2 for y and solve for p,” Alex says, correctly.

With a clasp that Sam puts on his right hand, Alex works his calculator with the “poker” that extends from the clasp. Oda-Riddell hands back a test. Alex got 42 out of 45 – an `A,’ although he says he’s frustrated by the three questions he missed.

Oda-Riddell says this of Alex: `He’s a superb student. He’s got an `A’ in the class. He’s obviously a really sharp kid and has a really positive attitude for a kid who’s gone through what he has gone through.’

Although she felt badly for him, Jamie Reinertson, who just graduated from South Eugene in June, was one of those students who didn’t see a stereotype when Alex appeared in the school’s quarter-mile-long hallways in January. Instead, she recalls thinking: “I’d really like to get to know him to see how he really is.”

Kendra introduced Jamie to Alex and on May 21, the two went to South Eugene’s prom together at the McDonald Theatre.

`Alex is one of those guys who you say, `Oh, this really sucks, being in a wheelchair,’ ‘ Reinertson says. “But Alex doesn’t see it like that. He doesn’t see it as anything abnormal. And that’s really wonderful.”

When Alex opened his report card after it arrived in the mail a few weeks ago, he saw that he’d received his first 4.00 grade-point average since the sixth grade, earning `A’s’ in all four of his classes – pre-calculus, physics, U.S. history and peer group.

“I don’t know how I got a 4.00,” Alex says. “This whole year I’ve really had to struggle to stay awake.” He often fell asleep in class because of the medications he takes, but Hazelett, who has bonded with Alex, was there to take notes.

“He’s a really amazing, brave kid,” Hazelett says.

`Without my body’

A piece of white construction paper sits on Alex’s lap in a conference room at Western Oregon University in Monmouth. It’s June 22 and Alex is drawing his “Life Map.” Alex is one of 12 disabled Oregon youths invited this year to the Seventh Annual Youth Leadership Forum of the Oregon Disabilities Commission.

He writes awkwardly with his right hand. At the top of the paper, it says, “Alex aka Grande – My Life in Five Years.”

There are three columns – one for “School/Home,” one for “Family,” and one for “Friends.” There are references to the “U of O” in green and yellow, and “Cal” in blue and yellow (the two universities he is considering for his freshman year in fall 2006); “Reunited With Dad?” written under “Family”; and that he hopes “to stay in touch with current good friends and make more friends in the future.”

On the other side of the paper, Alex has written – “My Life Now.” There are drawings of his mother and stepfather and his brother, Max, who just finished his freshman year at the University of California, and Marisha, the yellow lab, too. There is also a drawing of his family’s home on Hawkins Lane; “SEHS” in purple; and references to school, work, Rep. DeFazio and KRVM, the Eugene School District radio station where he will be a disc jockey this summer.

The forum is a career leadership-training program for high school students with disabilities who serve as delegates from their communities. They come to learn self-advocacy, self-determination and how to get involved in their communities, says Danielle Knight, the commission’s executive director. “I think Alex has a lot of potential,” Knight says. “He’s new to the disability life and what Oregon has to offer, but I also think he has the passion to succeed.”

As Alex and the other delegates – who met with state lawmakers in Salem during the conference – surf the Internet for information on disabilities, peer mentor Joe Basey, a part-time special education employee for the Springfield School District who was born with cerebral palsy, talks about Alex’s future. “You’re a better leader if you’re informed and you know what’s out there,” Basey says. “Knowledge is power. Alex just has innate potential to be a great leader.”

A few moments later, Alex is sitting outside in the partial sunshine, reflecting on the past year. “I think I’m more focused and have more opportunities,” he says. “My opinions have changed. I’ve really opened up my eyes.”

The day before, on June 21, the delegates visited a camp about 90 minutes away from Monmouth for a “ropes course.” On the way back, Alex sat on the bus, looking out the window, taking in the scenery.

“A year ago today, on a drive like that, I would have been talking to everybody and distracting everyone and screwing around,” he says.

Instead, he was quiet and contemplative. Humbled. He saw the countryside and the farmland and the sign that said “Diesel & Bait.”

Alex said he was “just trying to observe places and figure out what Oregon is like and what other people are like and using that information to improve myself and helping other people out. Without my body, I’m using my brain more. And, hopefully, it’ll do other people more good than it does me.”

HOW TO HELP

A special needs trust has been established for Alex Ghenis, as medical insurance covers only about 50 percent of his health care costs. About $11,000 has been raised by community fundraisers, but his family says he’ll need $70,000 to $80,000 to cover his costs through college. Here are three ways to contribute:

National Transplant Assistance Fund: Make a tax-deductible contribution to the NTAF’s Southwest Spinal Cord Injury Fund in honor of Alex. Ninety-three percent of your contribution will be returned to him. Send to: 3475 West Chester Pike, Suite 230, Newtown Square, PA 19073

RiverPlay Park: Buy a tax-deductible, engraved brick for $100 from the city of Eugene through the Lane County Medical Society for a new wheelchair-accessible play area in Skinner Butte Park, and $10 of it will go to Alex. Call 686-0995

Selco Credit Union: Checks can be sent directly to the Alex Ghenis Trust at the credit union: P.O. Box 7487, Eugene, OR 97401

www.caringbridge.

org/ca/grande: Go to this Web site to see a timeline of Alex’s injury and recovery, and make a contribution in his name

ALEX’S MEDICATIONS

Alex Ghenis takes a plastic cup full of the medications listed here every morning to stem his spasms and pain. Wednesday, Dr. Donna Morgan surgically installed a pump in Alex’s abdomen that distributes baclofen, a muscle relaxant and anti-spastic drug used to relieve muscle spasms and pain, through a catheter funneled into the epidural space of his spinal cord. This will allow Alex to taper off the baclofen he takes orally, as well as the Valium and Zanaflex that make him sleepy in class.

  • Baclofen: 40 mg daily
  • Zanaflex: 4 mg three times a day; 8 mg at bedtime
  • Ditropan XL: 10 mg daily
  • Prilosec: 20 mg every morning
  • Minocycline: 100 mg twice daily
  • Rifampin: 600 mg twice daily
  • Valium: 5 mg three times a day
  • Bupropion XL: 10 mg every morning
  • Colace: 100 mg twice daily
  • Senna: One every morning
  • Crantab: One twice daily
  • Magnesium oxide: 400 mg daily
  • Multivitamin: One every day
  • Vitamin C: 500 mg twice daily
  • Restoril: 30 mg every night
  • Amitripyline: 25 mg every night
  • Gabapentin: 300 mg as needed for pain

PARALYSIS INFORMATION

More information on paralysis and spinal cord injuries can be found at these Web sites:

  • www.catastrophicfund.org: The National Transplant Assistance Fund provides financial and emotional support to transplant patients and those afflicted by catastrophic injury
  • www.christopherreeve.org: Information on the foundation created by the late actor to fund research and find a cure for paralysis

SPINAL CORD INJURIES

  • About 11,000 new spinal cord injuries occur in the United States every year. The most common cause is car accidents, followed by acts of violence, falls and sports-related activities.
  • Post-injury hospitalization: Averages 16 days and costs $140,000
  • Average first-year expenses: $329,841
  • Average lifetime costs for paraplegics: $730,277
  • Average lifetime costs for quadriplegics: $1,270,000
  • 52 percent of spinal-cord-injury patients are covered by insurance
  • 56 percent of spinal-cord-injury patients are unemployed 10 years after injury

— National Transplant Assistance Fund


First place award for best feature story in the 2006 Society of Professional Journalists’ Pacific Northwest Excellence in Journalism contest and the 2006 Oregon Newspaper Publishers Association “Better Newspaper Contest.”