Granola Bars and the Dark Place

Julia’s post:

I know it has been quite a while since I’ve posted anything. Here is a small vignette of a moment in our ride today that should sum up a lot of what has been happening:

Eve: This bridge over the river is beautiful! I want to take a picture of us! (herself, myself, Patricia, and Dr. Gordon)

*the 3 of us dutifully shuffling and shoving our loaded bikes against each other to get in the frame*

Eve: Julia, don’t eat that granola bar in the photo, you’ll look like a chipmunk. Ready? Smile!

Julia: chmchcmchcmchcmchcmchcmchcmchchm

Eve: Were you eating??

Julia: grgcmchgrchmgrchm – yeff – gmchgrmchgrm

Eve: *long-suffering sigh*

Julia: thif if fewwy on-bwand! Ah eee confthanthfly. A fewwy acuwwate repwesenthathion!

As I type this, I’m eating fig newtons.

 

Anyways, so we have been steadily working our way through Michigan. We are now in the UP (upper peninsula), and the last 3 counties I have ridden into all have signs saying snowmobiles are allowed on road shoulders. This is new territory for me.

We have had some really poignant conversations with people along the way, and I wanted to write about some of what we’ve heard here. So much of what stays with me after an interview is over stems from the currents of emotion you can feel when the interviewee speaks.

“Jonas” spoke to us in a laundromat, and I learned he is retired from the military and sold his home and most of his possessions and travels the country to see all the places that he and his late wife, who died 2 years ago, always talked about visiting. He was a very measured speaker, never rushing to answer a question and really searching for the exact words he wanted to use. In our meandering discussion of healthcare policy, the idea of government regulation came up. Instead of going into the territory of “should the government prevent insurance companies from dictating prices and treatments?” like I expected, he became very solemn and brought up the Sandy Hook Elementary shooting. Jonas thought if the government had better regulations for firearms, that and so many other massacres like it could have been prevented. As far as I know, he has no direct relation to anyone from that area, but even still, he clasped his hands in his lap and had to bow his head and take a moment to collect himself before finishing his thoughts on the matter. I could see the glassy sheen in his eyes for an instant before he continued on. Sitting face-to-face with someone who has agreed to have a pretty personal conversation with essentially a random stranger heightens the sense of sharing something, and I came away from that feeling distinctly unsettled. Not because of him, but because I felt what he felt as he recalled that awful dark memory.

Today we interviewed “Stacy,” who works at the motel here in Norway. I was utterly unprepared for the intensity of her interview. We learned she lost her daughter, “Jenna,” 2 years ago to cerebral palsy and a mitochondrial disease when she was 21 years old. Until the day she died, Stacy fought tooth and nail for Jenna to receive the services she should have gotten via Medicaid but never came through in a timely manner. This single mother of 6, who worked full time, told us about how she used to carry her daughter around and would have done so “until we had to hire someone to carry us both around” because by the time Jenna was approved for a wheelchair as a child, she had already outgrown it and they had to start all over. This woman unwaveringly insisted she would “sell my ass, sell drugs, whatever it took to get my child the medications she needed.” Stacy talked about how she felt as though administration was just waiting for her to give up and go away until the day Jenna died, after which Stacy drove home alone and found the letter that finally approved her daughter for social security that they had applied for months prior.

Stacy and Jonas made very observant and detailed comments concerning healthcare policy and why things do (and don’t) work in this country. More importantly for me, as a future physician, is the reminder that though healthcare policy is hugely important, educating patients about it comes secondary to being present for them in the “dark place.” The dark place is my shorthand for all the ugly, frightening, uncomfortable ways we can feel when we stop and really try to imagine ourselves in the place of someone who has suffered. The more I listen to different opinions about healthcare and who deserves it, the more firmly I believe that it is a human right. Perhaps sometimes people so strongly resist that idea not because they really think the economics of it are the most pressing concern, but because they have never tried to put themselves in the dark place with somebody else. It is so much easier to blame laziness or entitlement than it is to think of the complexities of race and class, poverty and affluence, capitalism and ethics. I think if we all spent more time in the dark, we would have far greater empathy for others, and put more effort into reducing what suffering we can. And the thing is, when you willingly put yourself down in that place with someone else, then neither one of you is alone.