I first became interested in Narrative Medicine about four years ago — only, I didn’t know that’s what it was called at the time. I didn’t know it was called anything, actually.
I was an adjunct English Instructor at Greenville Tech. One of the classes I taught was for their Jump Start program, teaching English 101 for dual credit to students at Carolina High School. These particular students were in a highly competitive nurse science club. The Union of Future Nurses? Future Nurses of America? I forget. But I do remember that they weren’t too keen on English. And I thought they should be. I thought that…I don’t know. That learning clear communication is probably important if you’re thinking about being a nurse.
So, driving back and forth to Carolina High School I thought about how to make English more interesting to these kids. If I couldn’t save English 101, I had to think of a great idea for English 102. And that’s when I came up with SICK LIT — that’s what I called it.
It was…perfect. Perfect. I had spent my own college years switching back and forth between being an English major and a Biology major, finally winding up with an English major and a Biology minor. I’ve always loved both, and I almost went to Med. School. This was the perfect type of class for me to teach. I was the perfect person to teach this class.
And then there was my dad. As I said, I’m not writing to even the score. I don’t blame anyone for my dad’s death. But I do think it was a shame. An utter shame. An utterly avoidable, tragically unnecessary shame. And the shame he felt and the shame my whole family felt for years before he died. That was a shame, too. An even more unnecessary shame.
That shame. That shame was another reason I thought up the course, though I pretended like it was all about my students. I had to know. When did we stop listening to the sick? When did we start blaming the sick for their sicknesses? When did we start acting like doctors are infallible? Like everything there is to know about the human condition can be put down on a chart?
Turns out it was a long time ago. Turns out we’ve been mistreating the sick for just as long as we’ve been treating them. Turns out the entire history of disease is the history of science getting it wrong. Of science saying: There is no disease here. These are not the droids you’re looking for. Pay no attention to the man behind the curtain. Until something or someone. Usually someone driven by a loved one, a belief — a story — forced a reckoning between the established scientific community and the upstart disease. The upstart diabetes. The upstart AIDS. The upstart late stage Lyme disease. All stubbornly insisting on being granted diseasehood, flying in the face of every test. Of every doctor who knows better.
And that’s why. That’s why Narrative Medicine. It’s not because I think that a poet would make a good surgeon or because I think that reading a great novel will cure your cancer. It’s because culture always runs ahead of politics. Ahead of policy. It’s because truths have to exist at the level of story before they’ll ever exist at the level of history. (Which is why you have to help me tell this story, if you can. You just have to.) It’s because great stories always envision and necessitate new technologies and new sciences — never the other way around. It’s because stories, not science or technology but stories, are always on the leading-edge.
If you have late stage Lyme disease, or any other disease that isn’t officially recognized yet, I can’t promise you this will work. I can’t promise that one more story about unrecognized sicknesses will do a whole lot of good or any good at all. I can’t promise that a cure will come faster, that your care will be kinder. I can’t promise that the shame will go away. I can promise only one thing. I can promise to believe you.