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Review: Kansas reporter tells story of life-and-death fight with meningitis

A personal account of a 22-year-old coming to terms with amputations

By Phil Cauthon | December 03, 2013

Topeka Capital-Journal reporter Andy Marso.

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An exchange between Gov. Brownback and reporter Andy Marso at a May 2012 press conference announcing a controversial tax cut

In two years covering government for the Topeka Capital-Journal newspaper, Andy Marso has become a familiar presence at the Kansas Statehouse with a reputation for tenacity.

Now, he's written a book that helps explain the source of his dogged determination. It's titled "Worth the Pain: How Meningitis Nearly Killed Me — Then Changed My Life for the Better."

Eight years ago, Marso spent more than four months in the hospital — including horrifying days in a "tank room," where doctors incrementally cut off dying skin and flesh from his feet and hands. He was left with his right thumb and the balls of his feet but lost his fingers and toes. After the cutting came constant, intense pain — Marso likened it to having his appendages continually crushed in a vise — and months of slow rehabilitation.

The ordeal left Marso shaken, both physically and mentally. The serial amputations forced him to spend months relearning basic tasks such as walking and eating, and he grappled with some of life's fundamental questions in the process.

Marso's book is essentially is a success story centered on answers he found to those questions. As he writes in the last chapter:

"You are entitled to nothing. But you can accomplish anything."

Marso also found a deeper faith in God. He writes:

"The way I saw it, if God did not exist, then all of this had happened at random. I had somehow won an absurdly awful reserve-lottery and gotten a disease that afflicted a tiny number of people — a disease threatening to rob me of my limbs. I couldn't stomach that. I had to believe that there was a God, and that this was part of his plan for me, even if it did not seem fair."

Unable to get out of bed for months, Marso was left to think about things that wouldn't be, such as carefree life with friends after graduation in an already-leased bachelor pad in Kansas City.<a name="continued"></a>

"That was supposed to be the place where I would spend a year living with my best friends, playing tennis, watching movies, having barbecues, telling stories and laughing over beers out on the balcony. That was my laid-back and lovely vision of life before meningitis. The first few months of that life already had been stolen and I felt the truth closing in: I might never get back there."

Bacterial Meningitis is relatively rare but potentially fatal. It can progress from flu-like symptoms to organ failure in a matter of hours, as it did in Marso's case. In the last five years there have been likely fewer than 50 cases in Kansas, six of which resulted in death.

People living in close quarters — such as dorm rooms and military barracks — are most susceptible. The U.S. military has required meningitis vaccination since the 1970s, and many universities have policies requiring students be vaccinated or sign a waiver.

When Marso was at the University of Kansas in 2004, he remembered seeing a poster about meningitis in the dorms, but that was it. KU had no policy to encourage vaccination against the disease (although Marso worked to change that just months after being released from the hospital).

"Worth the Pain: How Meningitis Nearly Killed Me — Then Changed My Life for the Better" by Topeka-based journalist Andy Marso is available on Amazon.com.

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As befits a first-hand account of a deeply personal experience, Marso tells the story mostly from his own point of view. But he also draws on information from family and friends. He describes the media interest in his plight and the sometimes agonizing transition from hospital life to a new one at home.

The book is also a patient's story, as well as a window into modern medicine and the staff at the University of Kansas Medical Center. Marso recounts his life-saving antibiotic treatments, conflicting medical opinions about amputation, doctor opinions offered in unseemly ways, treatment accidents that put him at risk. He has high praise for most everyone at KU Med, but venom for his bedside psychiatrist and for the hospital food. He formed a particularly close relationship with plastic surgeon Dr. Thomas Lawrence, who worked to save as much of Marso's hands and feet as he could, even though that led to weeks of agony in the "tank room."

At the same time, Marso's book tells the story of how devastating medical emergencies can be to families. His parents, two brothers and grandmother spent months away from work and school. His mother ultimately had to close her law firm in Minnesota. All told, the treatments cost his family more than $100,000 — despite insurance.

Marso will be signing copies of his book from 1 p.m. to 2:30 p.m., Wednesday at the Washburn University Holiday Open House in the Memorial Union, lower level. (map)

The book relates how important it was for him to receive support from family and friends. Marso describes KU professors putting up visitors from out of town, countless people bringing home-cooked meals and how the constant stream of visitors helped keep his spirits up. Among those who came to see him were local sports heroes and strangers who had suffered meningitis. Marso writes:

"I was lucky to have five advocates with me throughout most of my stay...

"It wasn't that way for all the patients. A tiny toddler in the next room wailed often during the week or two he was there. The staff did its best to keep him company...

"Apparently the toddler's mother was an unmarried teen who was not particularly attentive. She accidentally scalded the child in the bathtub, and now she only stopped by to visit for a few hours each day. She was frustrated because the baby didn't want to play when she was there, and so she had more or less handed the child over to the staff."

Marso's writing rings honest throughout — sometimes uncomfortably so — baring the soul of a 22-year-old who is wrestling with an onslaught of emotions. While it's not always rational or flattering, it's often poignant.

"Why had I been saddled with this rare disease and its rare deformities?" Marso wrote. "I thought of all the people who came to my aid when I got sick...I couldn't imagine anything that would glorify God more than the love that was poured out toward me. If there were no suffering in the world, there would be no need for that love, that compassion. Someone had to suffer to bring it out, so why not me?"

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