In the last two weeks of his college career in April 2004, then-Kansas University student Andy Marso noticed a peculiar rash on his arms he thought was a harmless skin affliction. But it was soon revealed to be something much more serious, and potentially fatal: bacterial meningitis, an infection of the fluid of the spinal cord or fluid that surrounds the brain.
Where to buy
"Worth the Pain: How Meningitis Nearly Killed Me — Then Changed My Life for the Better” by Andy Marso is available for purchase on Amazon.com in either paperback or e-book.
After some of his friends saw Marso and realized something was seriously wrong, they took him from his room in Pearson Scholarship Hall to the campus health center, and within a few hours, he was flown to KU Hospital, clinging to life in critical condition.
As he was barely conscious in the hospital's burn unit with severe limb damage, the staff found out he was a journalist and told him this traumatic experience was going to be bookworthy.
“It’s like, 'Give me some time to stabilize my internal organs and then we’ll think about writing a book,'” Marso now says, jokingly reflecting on that night in the hospital. “But they planted the seed.”
Released in November, Marso’s book, “Worth the Pain: How Meningitis Nearly Killed Me — Then Changed My Life for the Better,” details the painful disease that led to the decaying and eventually loss of parts of both of his feet and his hands, except for his right thumb. Marso openly shares the raw emotions he endured during the four months of incredibly painful nights in the hospital and how that experience has made him a better person.
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Believe it or not, his initial reaction to contracting this rare infection wasn’t a newfound appreciation for life.
“I had so many of nights when I laid awake and thought how can I wake up tomorrow and face this again,” Marso says. “I just can’t do it. This is too much.”
Marso started documenting his experience in 2006, pouring anything he could remember onto the pages. He brought his completed manuscript with him to graduate school in 2010 at the University of Maryland, where he worked on it with a professor who told him he needed a central theme.
It had been six years since his illness. He had gone through one year of physical and occupational therapy relearning everything from walking to bathing. He had gone through a few years of practicing alternative ways to do everyday things he used to do before losing his limbs. The first two years he struggled, he says, reminded daily that it wasn’t always this hard.
“I had to get a point psychologically where I couldn’t remember how much easier I had it,” Marso says. “Now I don’t even know what it’s like to go through life with two normal hands and two normal feet.”
Being at Maryland on his own, working once again toward his journalism career seemed to change his perspective significantly. He then came across an Eleanor Roosevelt quote by a statue of Franklin D. Roosevelt in his wheelchair at the FDR memorial site that resonated with him:
“Franklin’s illness gave him strength and courage he had not had before. He had to think out the fundamentals of living and learn the greatest of all lessons — infinite patience and never-ending persistence.”
“When I read that I was like, 'that’s my story,'” Marso says. “That’s the theme. All of this that I went through, it actually was for the good in the end.”
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Before his illness, he didn’t have to go through much, Marso says. He was raised in the suburbs, upper-middle class with two loving parents who were very supportive. This was the first time he was learning the true meaning of persistence.
“Sometimes your parents aren’t going to be able to solve problems for you,” he says. “You’re going to have to take challenges head on and just plow through them. Sometimes it’s going to be two steps forward and one step back. It’s not always going to come easily, but some of the most difficult things that you go through are going to be the most rewarding.”
In hard times, people often question their place in the world and why they have to suffer, Marso says. His learned perspective was that his suffering brought out the good in others.
“There was so much love that was showed to me and poured out to me that it couldn’t help but inspire people and make them feel good about humanity,” Marso says.
This strengthened his relationships with many, particularly his father. After nights in recovery sharing personal thoughts, they grew closer than most fathers and sons do, he says.
“My story is one of people rallying together to help someone, to ease somebody’s suffering,” Marso says. “When I look at that, if my suffering could bring about that kind of change, then it was worth it.”
Drawing on lessons of persistence while tackling the journalism job market, he stayed optimistic despite many application rejections. Today Marso writes full-time as the state government reporter for Topeka Capital-Journal. He was previously a sportswriter for three years at The Olathe News and a freelance writer for The Washington Post.
Marso hopes his book brings a greater awareness to bacterial meningitis, the effects far more severe than he even experienced, he says. Fifteen percent of infected people have permanent damage including limb, hearing and vision loss, as well as brain damage. Another 15 percent die, as a result.
“My god, the things this disease can do to a person in less than a day, it’s really devastating,” Marso says. “Yes it is rare and you’re not likely to get it, but I beat those odds.”