Ryan White And The Battle of Kokomo

Most tulips like Mediterranean climates and detest summer rains. They bloom quickly. Others need a long dormancy under cover of snow. They bloom late. But their colors are more vivid. Long after the others have lost their petals, they linger.

Encounters with people can be much the same.

They may reveal themselves immediately. Or, the full impact may lay dormant, maybe for years.

I was a newspaper reporter for a time after college. In the summer of 1985, I met a 13-year-old boy who’d been diagnosed with AIDS. Back then most people didn’t know much about AIDS, other than it was very, very bad and it scared them. So much so that this particular boy was barred from attending school in Kokomo, Indiana, where his family lived.

This all came back to me with the news coverage of the anniversary of the first reported cases of AIDS. Thirty years ago, this week, June 5, 1981.

More than 100 parents and 50 teachers signed a petition requesting this boy in Indiana be kept home. A group with the uber-ironic name “Concerned Citizens and Parents of Western School” held an auction, hosted by a guy who did a local radio show, to raise money to fight the family’s efforts to get him back in class. When the boy and his family ate in local restaurants, their plates and silverware were thrown out. Some concerned citizen fired a bullet into their living room.

In those days there was a lot of bad information floating around about how AIDS spread. Confusion reigned. If you didn’t know how to read, that is. At the end of the day, it was the old story of people choosing to act like wankers, making a bad situation worse.

There were no other reporters around the day I met him. His story was new, and he was still basically a kid who was puzzled why he couldn’t attend school. This was Before Elton John and Michael Jackson wrote songs about him, before the largest federally funded HIV/AIDS program in history was named after him. Before he became, through no fault or desire on his part, an international news story, and a cause.

Ryan White was a hemophiliac who had contracted HIV from a blood product called Factor 8. When he was 13, sometime around Christmas, he was diagnosed with AIDS.

Part of being a general assignment reporter is total immersion in the most awkward social situations imaginable. Seeing people at their worst. Being the one who barges in and demands to immediately speak to someone about the Elephant in the Room. Against the grain of my personal nature. I never really got used to it.

I knocked on his front door, not knowing what sort of reception to expect. His mother, Jeanne, was sweet and gracious, unbelievably so. Ryan breezed into the living room, shook my hand with a “Hey.” He was well into the awkward teenager phase. But I thought his spiky haircut was cool. He announced that he had to do his paper route, delivering the venerable Kokomo Tribune. I asked to go along.

We spent most of this time commiserating on the Existential Angst of the Paperboy. I’d had a paper route back in Ohio and hated it. All paperboys hate their paper routes. This is a little-known fact outside of the brotherhood, but it is universally true. Other than the one autumn day the beautiful housewife who lived in the green ranch at the crest of the hill on Vernedale Drive came to the door wearing only a tiny, white cotton towel, my paper route had been a miserable vale of tears.

But I never had to contend with the long stares and hushed “There he is again” murmuring that Ryan endured. I found out some time later that several Tribune customers cancelled subscriptions; apparently they feared Ryan could pass the AIDS virus to them via newsprint. If you remember the early 80s, that’s how it was.

Throughout the afternoon I think I spent all of five minutes asking him about his illness, about the school, the parents. I mean, what the hell was he supposed to say?

The most annoying thing about teenagers is the what. ever. I’m-so-bored energy they put out. But it is also their hidden super power. I saw it in Ryan that day. An “Ok, whatd’ya got now, world?” resilience in the face of a horrifying truth. He was under a death sentence and virtually the whole town wanted him gone. Yet here he was, delivering Kokomo Tribunes, just getting it done. The next time you see a teenager behaving this way, resist the temptation to judge. Sometimes it is true and pure grace under pressure.

Later he and his mom and I sat on the grass in their front yard and talked more. His mom wasn’t angry about the town turning on her son, or if she was she didn’t show it. Jeanne worked at the GM plant in Kokomo, where her thoughtful co-workers would scribble hateful notes about Ryan on her timecard. She managed some sense of humor about it all, which was surprising and delightful but mostly remarkable. It was kind of like listening to any other single mom recount the long list of crap she dealt with that week.

The story I submitted, or a version of it, was on the front page of USA Today the following morning. I just wrote about what I saw, what few things Ryan said in answering the very few questions I asked him about the actual matter at hand.

It wasn’t much of a story. USA Today was meant to be quick and digestible; editors haltingly and brutally edited sentences that contained more than five words. Their style guide required that they change phrases like “American Children” to “USA Kids,” which tended to trivialize things. My point is that Ryan deserved better. But he deserved better just about every day of his life.

Ryan and his family moved to another town in Indiana sometime later, the down payment on their new home footed by none other than Sir Elton John, who would later establish a foundation in Ryan’s name. By that point the whole world followed Ryan’s story. They made a movie about him; the little boy from Witness played Ryan, and Sara Jessica Parker was his brave nurse. Jeanne was played by Judith Light, and I wondered what she thought about that.

But he kept getting sick, and on April 8, 1990, he was gone.

In the 25 years since I walked Ryan’s Indiana paper route, the experience has taken on new and multiple meanings for me. Not because his story changed and became such a phenomenon, but because I changed. For one thing, I went on to have children of my own, kids who had the opportunity to grow up into adults. I have an infinitely more vivid idea of what his family suffered, of what was lost.

More importantly, who Ryan really was became clearer to me. At the time, I just saw a tough teenager facing down something awful. But if you’re around long enough, you eventually see how powerful prejudice and ignorance are, and the thoroughly nasty damage they do in the world.  It’s the worst thing out there, the scariest thing there is. Back in the 80s, a scrawny and sick, five-foot-tall, Kokomo Tribune paperboy went toe to toe with that monster. I saw it.

What I mean to say is, there are times and places where the cool bravado of a 13-year-old boy can be more impressive than anything the Navy SEALS can do.

His mother spent the following two decades lecturing and advocating and telling her son’s story, but there are always new issues and challenges emerging around the HIV and AIDS.  On balance, I guess it’s remarkable how much attitudes changed.

Maybe some sort of Karmic counterpunch to all that ugliness and intolerance so many years ago. Not unlike an amazing and stunning tulip emerging, inexplicably, from the most unlikely soil.