“Are you riding for A Cause?”

This was a very common question on my Long Ride. And I’d smile and reply “Nope! I’m riding B Cause this is something I’ve always wanted to do – since I was a little kid – and I believe the world would be a much better place if we all did the thing that’s in our hearts to do.”

It was a bit of an awkward question, because it felt like part honest curiousity, part thinly veiled judgement, part them looking for an excuse to open their wallets and donate money to something that mattered. Some official non-profit organization that would make sure that their money went only to the properly deserving (and their noble custodians) not some random woman with a couple of horses off on a joy ride. I chose to focus on the honest curiosity and keep my fear of judgement to myself, but I thought about it a lot, having long (slightly defensive) conversations with the ponies as we plodded along.

When I was 28 I was diagnosed with polycystic kidney disease. I’d never even heard of it before then. I’d been driving historic horse and buggy tours in Baltimore when I got super sick, peeing, pooping and puking blood and too wiped out to be scared. Somebody got me to the ER and I was put on antibiotics, my Dad drove down and fetched me home. I hadn’t been given the full course of antibiotics, being told to follow up with my home doctor. I didn’t have a home doctor, didn’t have health insurance, but my folks took me to the local clinic where the PA said that since I was doing better I didn’t need to keep taking them. A few days after that I was in the back seat of the car, clinging to my mom’s hand, semi-conscious and moaning as Dad drove much too fast and as smoothly as humanly possible the 25 miles to Albany Med. Mom said (later) that she knew if I let go of her hand I was probably dead. I was in hospital on IVs for 9 days while they figured out what was wrong. Apparently I’d gotten strep in one of the cysts, it had burst into my abdominal cavity and gone septic. Before I was released the doctors told me that I could never ride horses again, never go camping again, told not to take risks or be too far away from a hospital just in case. I felt like my life was over. (It wasn’t over!)

It would have made sense for me to do a ride to raise money for the Kidney Foundation, right? But I didn’t talk about my kidneys at all on that ride – because I didn’t want people feeling sorry for me. I didn’t want the ride to be about my disease. That wasn’t what I wanted to be talking to people about every day. Was that selfish of me? Maybe.

But on the other hand, this was before ACA/Obamacare – I now had a known pre-existing condition and there was no way I could afford health insurance. My folks had gotten me on Medicaid to cover the hospital stay and keep me alive, but once I was on my feet again that was gone. Uninsured, I was never going to benefit from whatever research was going on in Kidney medicine. And honestly? I was relying on the generosity of strangers to do the ride. When somebody handed me $20, I needed it for food for me and the ponies. I needed it for the occasional health certificate to get the herd across a state line. If I had to hand all of those donations over to the Kidney Foundation I wouldn’t be able to do the ride at all. “Riding for a Cause” (for over two years!) was for rich folks, lawyers on sabbatical and trust fund babies. (Funny how often people assumed that I was in one of those categories – one of the privileged few!) For most of us, raising money for a cause makes sense for a 5k or a bake sale, but not for an extended journey by the likes of me!

I’m still not independently wealthy, my kidney disease has progressed to stage 4 and the cysts have migrated into my liver (one of them is the size of a grapefruit and poking out the front of me!) and that’s still not what I want to be talking about every day. But here’s the really good thing – I learned a lot on that last Long Ride. Most importantly, I learned that not only was it possible to do such a thing, it felt like I’d finally found the very thing I was uniquely designed to do. Another thing I learned was that I needed to have a story, my own story, and to be able to tell that story in a way that made sense to people.

Last time as I crossed the country, many, many people told me their stories and I didn’t share them on the blog. Plenty of reasons: in part because I was “Saving them for the Book”, in part because if I started mentioning every person I met and stayed with by name, the blog was going to devolve into an extended, public, thank you note – which is boring for everybody except the person being mentioned – and if I were to forget or omit somebody, they might feel slighted. I was keenly aware that my blog was being read by 5th graders being raised by very conservative Christian parents and I didn’t want to write anything that would give cause for concerns and censorship. I didn’t want to give any attention to the pervy little man who dangled his naked dongle at me, trying to get a reaction. I didn’t want to shame the person whose house reeked so strongly of cigarette smoke and a recent house fire that I had to decline their offer of a bed inside – or the person who kept me awake talking until 3am and then woke me up for breakfast at 6am. There was a story that still haunts me about the young granddaughter of a green card immigrant being bullied and molested by the son of the local sheriff, a story told with grief and rage and desperation and the shameful knowledge that there was no recourse. There were highly respected people behaving horribly and incredibly kind and generous people doing illegal things to keep themselves alive and the blog wasn’t the place for any of those stories. It was the place to share the story of my own improbable journey across an unknown land with two mythical beasts with huge hearts named Jesse James and Saint Finehorn.

This time I’m going out specifically to document and share as many stories of the people that I’m encountering as I can manage. I remember the amazing hospitality I was shown and the dire warnings about “those people down the road” who turned out to be just as lovely. I remember finding common ground with people who diverged wildly in their political and religious beliefs. I remember the hope in my heart at the state of our Nation revealed in the actions of the people who took me in and fed me and offered me shelter – not every person every time, but way more often than not. I remember the courage of the elderly couple whose house had been broken into by armed men who beat them and tied them to their kitchen chairs and stole money and valuables and a sense of security – and two weeks later, bruises still visible, that same couple welcomed me in to their home and fed me dinner, sitting on those same kitchen chairs.

I think about Jesus saying “love your neighbor as yourself” – and the time a lawyer asked him about that, looking for a loophole, asking him “who is my neighbor?” (Jesus responded with the parable of the Good Samaritan) “Who Is My Neighbor?” I feel like that’s a very real question in today’s world. How can we love people that we know nothing about except for what we’ve learned from internet rumors and stereotypes? How better to get to know people than to let them speak for themselves? To ask them questions and listen to their stories? So that’s what I’m planning to do. I’m heading out across America armed with nothing but a cell phone/video camera and a pair of tiny microphones and a list of questions. I’m not going to ask “who did you vote for?” or “what church do you attend and how often?” or “do you believe in climate change?” because those are the sorts of questions that do more dividing than connecting. I am going to ask people “what does a good life look like?” and “what do you wish you had more time for?” and “if you got a checklist when you paid your taxes saying what the government could use your money for, what would your top three priorities be?” The very last question in each interview will be: “if you could ask everybody in America one question, what would it be?” And then I’m going to post those interviews on YouTube and invite people to answer that last question in the comments.

I say this as though it will be a simple thing, and then I laugh at myself. When I mention this idea to people they focus on my vulnerability: a woman alone with her devoted Corgi and a pair of wee ponies, driving down the road, knocking on the doors of strangers, in a world that seems to be getting scarier by the day. But that’s not the part that I’m most concerned about. My real challenge here is learning how to manage the technology. I’ve spent weeks into months researching what equipment I need in order to make this project happen in its simplest form. I’ve already spent hours into days trying and failing to figure out how to get the two little dji microphones to connect to my cell phone so that I can record an interview in stereo. Today I’m waiting for a tiny $3 adaptor to arrive in the mail that I didn’t realize that I needed until some patient tech guy on YouTube explained it to me in very simple terms. If you are reading this and have a bit of time and patience to spare and are willing to help me up the learning curve I’d really love to hear from you! Meanwhile…

I tried (and failed) to make a poll so it would be easy to “vote” on ideas for the upcoming YouTube channel with the videos of the interview – I value your opinion if you’d be so kind as to respond in the comments! Names I’m considering:

Hello, Neighbor

Love Your Neighbor

Questions for My Fellow Americans

Who is my Neighbor?

Hello America!

We The People  

(anything else you’d like to suggest!)