Please think of me as a messenger, a carrier of peoples’ stories, so to speak. I’m biking across the country to listen to and share the stories of those affected by Lyme disease and all tick-borne diseases (TBDs), illnesses that can be complicated, overlooked, and just plain uncomfortable to talk about. In my view, we—the Lyme and TBD community—haven’t told and shared our stories effectively. We definitely have not been fully heard and truly seen. My mission on this trip is to learn why that is, maybe even to change that; and to empower some people along the way.
Some initial questions I have in mind for this journey: Why does this epidemic (Lyme and all TBDs), which affects at least 300,000 people a year, seem hidden? Why are many patients reluctant to talk about their illnesses? Why aren’t Lyme and TBDs cool diseases to have? Who owns these diseases? Why should anyone even care about Lyme? And what does all of this mean to us—the people who live and suffer with these diseases?
I’m not sure what I’ll find yet, exactly. Maybe listening to and sharing the stories of patients from a whole range of diverse backgrounds will elicit some new insights into our understandings of these diseases. At the very least, being visible and verbal about what we’re going through seems like a good place to start. I, too, had a bad case of Lyme disease and still deal with various symptoms that stem from that infection, so I’ve got some skin in the game. This is not my bike ride, though; it’s ours.
But, to make sure people are comfortable with all of this, specifically with me being the narrator of this journey, I think it’s important that I’m open about some of my anxieties about this trip. Future posts won’t be of this autobiographical sort, I promise, because it’s not about me, but right now, it’s just me here—
And I’m sitting in a totally packed Gate C86 at Newark International airport, killing the hour before my flight out to San Francisco by trying to summon up and write down my feelings about this cross-country ride. What’s the analogy for what I’m feeling? The anxiety of going away to college is close but too weak. I was a diligent student joining a class of 700 presumably like-minded kids, attending a school just a few hours drive from my home, and even rooming with Brent McDonough, my best friend since I was three-years-old. That was actually a pretty comfy transition, now that I think about it. This journey’s different—it’s become something that’s at once very personal, totally public, and intimately shared. It’s also daunting.
Lately it feels like I’m regressing, not health-wise but behaviorally. I’m doing things I haven’t done in several years: chewing on my lower lip, wringing my hands under dinner tables, even twirling my damn hair, all unconsciously. This is the stuff of pubescent boys.
I’m nervous, excited, distracted, possibly unqualified, and wildly curious. It’s more than those things, though. It sounds paradoxical, but it’s like my reverting back to these juvenile habits is a sign that I’m ready for growth. It’s like going through puberty but the changes aren’t physiological; they’re influenced by other people—people I don’t even know yet. I’m focused on these people, blocking out things that aren’t essential to them, and preparing to be expanded by their stories.
But my flight’s just been called, and now I’m grinning like an idiot, laughing to myself, thinking about all the people I’m going to meet.