Daily Iowan

Issue date: 5/6/08 Section: Metro

Media Credit: Lindsey Walters/The Daily Iowan [Click to enlarge]

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Marc Zider is a 19-year-old man trapped inside the body of an 11-year-old boy. He is likely the product of modern medicine gone terribly wrong.

By all accounts, the UI freshman should be dead - a dozen times over. His tale is one of harrowing escapes from inexplicable illnesses followed by yet more illness. His doctors haven't seen anything like him, Marc says. In his own words: He's writing the textbooks on a sickness never seen before.

He suffers from a combination of pancreatitis, kidney failure, low blood count, a susceptible immune system, intestinal ulcers, gout, and high blood pressure and cholesterol. This is a juggernaut that makes Marc's pancreas devour itself, that lines his intestines in sores, that lacquers his joints in uric acid, that turns a sip of alcohol into poison.

The 19-year-old has spent more than a fourth of his life in a hospital.

These ailments and the subsequent medical care have left their mark on his body. He stands at 4 feet, 11 inches, weighing barely 90 pounds. Up and down his arms swim scars thick as any heroin addict's. He walks in timid, fitful steps.

"I've struggled most with the 'why me?' " said Marc, who takes 12 daily medications. "I don't pretend there aren't others with problems, but ultimately, I ask, 'Why me?' "

His entire day is consumed by one goal: just get through it.

On a quiet wing of Burge Hall, where the UI freshman lives, he tries to do just that, veiling his slight frame under loose-fitting shirts and baseball hats. Because of his low blood count, he's shackled by an interminable lethargy and is only awake for nine hours every day, he said.

An open copy of On Death and Dying: What the dying have to teach doctors, nurses, clergy, and their own families rests atop his nightstand. Though Marc's illnesses aren't currently terminal, he said he lives his life teetering on death's edge, looking down.

His many illnesses may consume his life. But the already-balding freshman doesn't let them define him. Equiped with a sarcastic disposition, he makes his way, dissolving even the most dire of prognoses with a dry joke, saying with a slight eye roll, "If you can't laugh at yourself, who can you laugh at?"

The Barrington, Ill., native is the shy, small boy labeled "gimpy" or "cripple" as a child, excluded from playground games. A musician with seven years of guitar-playing behind him. A scholar. A pre-med student determined to one day help others like him.

"I don't care that I'm short," he said. "Look at Danny DeVito. Danny DeVito's a pimp, and he's my height. Some of the world's greatest people are short."

It's not his height that brings him down. It's his sickness.


The early diseases

On Oct. 28, 1988, his mother - Nancy Lovendosk, with the support of husband Steve Zider - gave birth to Marc at Northwest Community Hospital in the Chicago suburbs. His parents remember the perfect picture of infancy: 10-fingered, kicking, bawling. Their son.

The young family bundled him up in thick blankets and started for home, brimming with hope.

Thirteen months later, that picture began to splinter. Inexplicable bruises kept surfacing and receding all over Marc's body like waves in the ocean. The blotches were large, multicolored, sinister.

"They were so weird, so bizarre," Lovendosk said.

The bruises were the signs of an acute lymphocytic leukemia quickly turning Marc's white blood cells against themselves.

The cancer kills 15 percent of today's victims under the age of 5, but Marc's mother recalls that her son's chances of dying as being around 65 percent.

To live, Marc needed a surge of white blood cells from a bone-marrow transplant, quickly, Lovendosk said. And so, the increasingly desperate parents turned to the closest match they could find, their other child,

5-year-old Laura Zider, who could only offer a less-than-perfect transplant.

Next, doctors bombarded the infant with radiation and other powerful medications, bringing Marc to the cusp of death only to bring him back again.

The treatments worked, but at what cost?

Though there's no definitive proof that this care contributed to his later sicknesses, Marc and his childhood doctors are convinced the injection of foreign white blood cells and radiation resigned him to a lifetime of unpredictable illness.

"You don't know what sort of problems someone's going to have until they survive," said Mary Hintermeyer, his primary nurse practitioner at the Children's Hospital of Wisconsin in Milwaukee. "And Marc is one of the earliest long-term survivors" of a bone-marrow transplant.

Adds Marc: "It's a contradiction. Something that saves your life also makes it a living hell."

And then, years later, after a period of relative health and calm, the illnesses stormed Marc once more - this time, with immediate life-altering consequences.

When Marc was in elementary school, both his femurs somehow became unhinged from their sockets, debilitating him and raising questions no one could answer about how it had happened without any accident.

"My hips were like an ice-cream cone," he said. "And the ice cream had fallen out of the cone."

It left Marc with a decision. Either he would never walk again, or he would never grow again.

He chose the latter, deciding to steady his hips with an infusion of growth-inhibiting steel pins to become a "walking hardware store," as he calls himself. Even now, metal detectors chirp every time Marc passes through.

"It had to be done," he said. "And that's all there is to that."

Only later, with the aid of growth hormones, did the youth manage to add a few more inches. But from adolescence on, there his height stayed - and will stay for the rest of his life.


The cost of maturity

Growing up, Marc never knew he was different. Don't all kids, his mother said he reasoned, visit the doctor several times a month? Only when his peers began to shoot up in eighth and ninth grade while his height remained frozen did the boy find something amiss, Lovendosk said.

More importantly, others realized his unusual height, too. And at that age, when even the most minute differences are magnified, Marc became an outsider, the one holding the clipboard and stopwatch in gym class rather than participating.

This exclusion spread to the playground. It was just a game of tag, he said. But even it wasn't open to Marc at Prairie Campus Middle School in Barrington.

One time, the middle-schooler tried to join the game, but bullies made fun of him, kept him away. With hot tears streaming down his cheeks, Marc fled as the taunts and jeers chased him.

Children are at their cruelest during those years, said Ray Piagentini, a guidance counselor at Barrington High School, where Marc graduated with a GPA above 3.6. "If you look different, talk different, miss school because you're in the hospital, you're going to be picked on," he said.

"No" is an answer Marc became used to during his childhood.

"No, you can't go home; you're sick and need to stay at the hospital."

"No, you can't play."

"No, you can't be my boyfriend; let's stay friends."

So Marc withdrew into himself and rarely let anyone in. While his arms and legs refused to grow, he developed a sense of identity hinged on maturity and cynicism.

Even lying on a hospital bed last month, he teased the medical staffers who were prodding and poking him with needles at the UI Hospitals and Clinics. "I'm just afraid for myself when I'm comatose and you're free to do what you want," he said to his doctor, Bill Silverman, a UI clinical professor of internal medicine.

"I've known him since he was a little kid, and he has to be one of the unique kids I've had in 31 years of education," Piagentini said. "He's just a lone wolf. He's got the wisdom of a 65-year-old."

It's that wisdom, that maturity, friends and family said, that's built a wall between himself and others. He's had trouble relating to his peers and maintaining a social life. Even as a young child, his mother remembers Marc coming home from preschool, saying he didn't like the other kids, that they were just babies.

"And I said, 'Oh my God, you're just a baby, too,' " Lovendosk said.

But from this solitude comes his music.

When he plays guitar, which he does constantly, his delicate facial features contort as tightly as a scolded child. His fingers - seemingly too small for such an instrument - glide about the neck with a vitality of their own and issue a profound, melodic sound.

This is his expression.

College life

Marc had only been in Iowa City at his dorm room a few hours last August when the pain started.

Ripping, searing agony in his abdomen. Imagine thousands of pounds of rock, he said, pushing down on your chest.

That pain was his second bout of pancreatitis and the closest he's ever come to death.

Earlier in the week, doctors had prescribed Marc an extremely powerful medication called colchicine to help alleviate severe gout in his joints. The drug hurled his system into a chaotic state and nearly killed him. Colchicine suppresses inflammation in the joints.

"We'd never met him before, and all he said was, 'I'm feeling pretty sick and need to use the bathroom,' " said UI sophomore and next-door neighbor Greg Wessels. "And then he was gone; we didn't see him until November."

Marc spent his first semester of college at the UIHC while nearly 30 doctors struggled to keep him alive, Silverman, said. Thoughts of giving in to the pancreatitis skirted his thoughts daily, Marc said. But no. With an austere determination, he kept breathing.

Now out of the hospital and 25 percent lighter since last seeing his Burge dorm room, all Marc wants is a beer. To be a regular college kid.

"The only thing Marc has ever wanted in his life was to be normal," his mother said. "Nothing more. Nothing less."

But one beer, one drink, could mean Marc's life. Drinking alcohol places an incredibly heavy load on healthy kidneys, but it's fatal for someone equipped with a pair like Marc's, which fire at only around 25 percent. That's not a risk he's willing to take. So as always, he keeps to himself.

"There have to be kids on this campus who don't drink," Lovendosk said. "But good luck finding them."

The UI freshman is legally disabled and one of 587 such students at the UI, according to the university Student Disability Services. In Iowa, there are roughly 70,000 disabled residents. Across the nation, 32 million, nearly one in 10, are disabled, according to the U.S. Census Bureau.

His single room, large by dorm-room standards and one of the 18 handicap accessible rooms on campus, has become the site of solitary confinement, self-imposed. There, he studies avidly, plays Guitar Hero and real guitar, all the while trying to fend off a lethargy quickly closing in.

If you see him around campus, he said, he'll likely be alone, head down, and listening to Phish or Dave Matthews Band on his iPod while his hands and feet move to a beat no one around him can hear.

"It's hard enough being a college student, but having no energy, not knowing anyone, and missing your first semester, it's really hard," he said. "It's tough to meet people. So at this point, I just sleep it off."

He said day to day he goes by the grim mantra: You can't grow without suffering.

And yet, he and his family ask, do his struggles at college really even matter?

"I'm not focused on how to make his college life better," said his sister, 22-year-old Laura, a senior at Ohio State University. "I'm focused on that he's alive."


Looking up at the future

It's 7:45 a.m. on a Friday. Outside, rain teems in heavy drops. Marc has yet another doctor's appointment at UIHC.

"For these, I don't even get nervous anymore," he said while walking into the Center for Digestive Diseases two weeks ago. "I only get nervous for surgeries, and really not even those anymore."

These regular appointments that check Marc's vitals to predict any impending illness are constant reminders that his body isn't his domain, it belongs to the nurses and doctors. Barring some major medical breakthroughs, these visits will be his life.

So when he finally does graduate - which could be some time off, because he can only balance a few classes each semester with his medical issues - he'll need to find a job with health insurance.

But medical professionals contend that his fate, a life of sickness triggered by rigorous medical treatment as a child, hasn't been in vain.

Every visit, doctors learn more about Marc and how not to treat children who are diagnosed with similar diseases, said his childhood nurse, Hintermeyer.

"They should make a book about me and call it What Not to Do," Marc said.

And yet for him, his contribution to greater science is little solace. He doesn't dwell on his medical issues much. He focuses on the now. And right now, back at his dorm room, he has a cafeteria lunch date with his neighbors before he catches the 12:18 p.m. Cambus out front to his pre-calculus lecture.

So he puts on his coat, picks up his belongings, and closes the door behind him.

E-mail DI reporter Terry McCoy at:
terrence-mccoy@uiowa.edu

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