Issac Bailey | Unexpected disease a learning tool

June 8, 2014 

I’m not sure what I expected when I headed to Boston and Cambridge, Mass., last August to become a member of the 2014 Nieman Fellowship class at Harvard University, joining 23 other journalists from around the world in the industry’s best known and oldest fellowship program.

I knew I’d be taking classes at Harvard, rubbing shoulders with high-profile national and international journalists and giving presentations on the work I had been doing in Myrtle Beach for almost two decades, but I didn’t know what that would mean or how it would feel.

I was a South Carolina native heading to live among Yankees for the first time in a state whose weather, politics, educational rankings and health care options and access were the polar opposite of those of my native state.

Civil War statues in South Carolina are of John C. Calhoun, Robert E. Lee and other Confederate and Southern stalwarts. Abraham Lincoln and Union soldiers are celebrated in a park a short walk from my Harvard apartment.

I knew it would be difficult to find sweat tea, boiled peanuts and a Wal-Mart; and it has been.

But I didn’t know the lessons I’d learn, because the winter of my Nieman year was long and hard.

And cold.

And dark.

And seemingly without end.

The weather – the worst Boston natives said they had experienced in decades – was bad, too.

In early December, near the end of the fall semester, my wife and I sat silently in Mt. Auburn Hospital as the neurologist confirmed his diagnosis from the prior week. I was suffering from the extremely rare auto-immune disorder CIDP. My immune system was attacking my nervous system, shutting down nerves, killing muscles and threatening my spirit.

The neurologist had just performed a series of uncomfortable, sometimes-painful, electrical tests on my arms, legs and fingers.

“It’s serious,” he told us. “But it’s treatable.”

Within a few weeks, I was physically weaker than my 9-year-old daughter and had a 9-day hospital stay from which we weren’t sure would ever end. I had a spinal tap, every medical test known to man, and a team of doctors wondered if brain fluid was leaking through my nostrils.

I could no longer run, do a single push up or button my pants or pull on my socks without the help of my wife and kids. For a few weeks, I was being pushed around in a wheelchair or hobbling on crutches and wasn’t strong enough to write with a pencil or type.

I’ve been having four or five days of infusions every month to beat back the white blood cells still attacking my nervous system. I’ve regained some strength and am independent but still walk like Donald Duke because my lower legs are weak, too weak to even stand on my tip toes.

I’ll detail more in future columns what I learned from having to deal with an unexpected, now chronic illness in a place hundreds of miles from home. It was a lot and gave me a new appreciation for the health care reform law I had been writing about before I left.

I’ve learned other things as well and gained new insight and perspective about gun violence and how toxic stress in too many households makes the lives of young students and their teachers harder. I want to share it all, and will.

The fellowship ended in May, but I’m not coming home yet, but will be a constant presence in The Sun News. My kids have to finish up their school year, which doesn’t end until the final week of June. And I will be sticking around Harvard through mid-August to teach a journalism course during Harvard’s summer school.

I’ll be writing a couple of columns per week for Thursdays and Sundays, as well as daily blogging at MyrtleBeachOnline.com. My initial posts, scheduled to be published this morning, ask readers if there are particular things they’d like to know about Harvard and Boston through the eyes of this old Southern boy and provides my take on the controversy surrounding the release of the final P.O.W. from the Afghanistan war. Yes, I also have a ton of thoughts about the most recent Atlantic Beach Memorial Bikefest, the upcoming elections and what it means that a loaded gun was left in the toy aisle of the Myrtle Beach Target.

I also might be branching out a bit and doing an occasional post for Esquire Magazine online.

After I bring my (hopefully) re-strengthened body back to the beach in mid-August, I’m hoping to interact with many readers and groups to go over some of what I learned in Harvard and find out from you what I need to re-learn about the Grand Strand.

Until then, I’ll see you in the paper on Thursdays and Sundays and online daily.

Contact ISSAC BAILEY at ibailey@thesunnews.com or follow him on Twitter @TSN_IssacBailey.

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