How Meningitis Nearly Killed Me, Then Changed My Life for the Better
Jun 26, 2014

By Andy Marso

I occasionally look at pictures of myself on a spring break trip in 2004, about a month before I almost died of a meningococcal infection.

I was a senior at the University of Kansas at the time and I brought my Brazilian roommate home to show him what spring break is like in Minnesota. There are pictures of him, with his shoulders hunched against the cold, and me and another friend in front of a frozen Gooseberry Falls, the ice and snow stubbornly refusing to cede the ground it had held for months just because the calendar had turned to March.

They are the last pictures I have been able to find in which I still have four normal limbs.  They are the last pictures of a different Andy Marso, one who was carefree and naïve and didn’t realize how quickly he could lose the life he loved.

Sometimes, when I look at those pictures, there are things I want to tell that Andy.

I want to tell him to turn and run up that frozen waterfall, to leap nimbly from one rock to the next, because some day he won’t be able to.

I want to tell him to flex those fingers poking out the sleeves of his fleece hoodie and marvel at all of the tiny, delicate muscles, nerves and joints that can move in ways that no machine can fully duplicate.

I want to tell him about Neisseria meningitides, the tiny bacterium that will soon invade his bloodstream.

I want to tell him that within weeks he will go to bed thinking he has the flu and by the next night he will be in intensive care, in a medically-induced coma, with his organs failing and his parents praying he will live.

I want to warn him that when he wakes up from that coma, he will face suffering worse than any he has ever imagined for himself. That for months, medical professionals searching for living, bleeding tissue will slice layer after layer of dead flesh from his arms and legs until his bones and tendons are exposed, but they will be unable to save his toes and most of his fingers.

I want to tell him that in losing that, he will gain new purpose.

That he will live out a dream by publishing a book called “Worth the Pain: How Meningitis Nearly Killed Me: Then Changed My Life for the Better.”

That while still in a wheelchair and with bandaged hands he will hold a news conference calling for Kansas colleges to require the meningitis vaccine and he will feel as if he’s exactly where he is supposed to be, doing exactly what he is supposed to do to make the world a better place.

I want to tell him that within a year the University of Kansas will begin requiring the vaccine for on-campus students and soon all the state’s public schools will follow suit.

I want to tell him that 10 years after he survives meningitis he will sit in front of Missouri legislators and tell them his story and they, too, will pass a bill requiring meningitis vaccination for students who live on campus.

That is where we sit today.

The bill is on Gov. Jay Nixon’s desk, awaiting his signature.  It would go into effect in the 2015-16 school year.  By then it is likely that the U.S. Food and Drug Administration will have approved a new vaccine for serogroup B meningitis, the type I had. The shot is already in use in Australia, Canada and Great Britain.  It’s the missing piece to a public health puzzle, with the current vaccines effective against the other four main serogroups that cause infections that kill, maim and leave victims with brain damage, hearing loss and vision loss.

Some day soon, if we have the political will and the personal responsibility, we will have the tools to make bacterial meningitis go the way of polio and other diseases that no longer leave grieving parents in their wake.

When I look at those photos of the old Andy Marso, with his 10 fingers and his blithe smile, I would like to tell him that if he soldiers on through all of the pain he’s about to endure, all of the late nights worrying about his future and all of the frustrating days learning to be independent again, that he can play some small role in the big fight against a terrible disease.

I think he would be scared, but I hope he would still be up for the journey.

Andy Marso is an award-winning journalist with the Topeka Capital-Journal. He has a bachelor’s degree in journalism from the University of Kansas, a master’s degree in public affairs journalism from the University of Maryland and has written for the Washington Post and other publications in Kansas and his home state of Minnesota. His memoir, “Worth the Pain: How Meningitis Nearly Killed Me — Then Changed My Life for the Better” was published in 2013.  You can follow Andy on Twitter @andymarso.

 

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