To tell this story, I have to go back to before. Before I gave my TEDx Talk, before I made GET BETTER, before I had done more than skim Oliver Sacks, before I wrote the first word on this blog, before I dropped out of grad. school. I have to go back to the spring of 2011 when I was still a bright, hopeful PhD candidate just beginning to toy with the idea of pursuing the emerging field of Narrative Medicine as my specialty.
That spring I went to a Narrative Medicine conference to test the waters. I went looking for answers. I went looking for like-mindedness and inspiration. I went looking for the same thing that all broken-hearted people look for. Other broken-hearted people. Community.
There were six panelists who ranged from the self-appointed "devil's advocate" and infectious disease specialist who argued that Medical Humanities is nothing but a PR and PC stunt and that "competence is compassion, but compassion without competence is fraud" to a medical humanist and linguist who asked the question: "In what world would the details of a patient's life...a life story...not matter to competent care?"
It was riveting. The debate was heady and alive. Rich with possibility. I sat on the edge of my seat chewing my pen and taking detailed notes in an orange notebook that I still have, though it's now held together with binder clips.
About halfway through the panelists' talks though, I began to notice that everyone, the experts and conference-goers alike, was discussing only two potential roles for narrative in medicine: narrative as a diagnostic tool, and narrative as a therapeutic tool. Something to help doctors diagnose and cure their patients...something to help patients come to terms with their illnesses.
This trend continued in the Q & A session as well. How can we use narrative to help with diagnosis? How can we use narrative as a way to make patients feel in control of their lives again? Both interesting. Both valid.
Because of my background as the daughter of a Chronic Lyme victim and as an English student, however, I really wanted to talk about a third use for narrative in medicine. I wanted to discuss how story works, the role it plays in culture. In other words, I wanted to talk about systemic cultural change and empathy. Desperately.
I hate speaking in front of groups, so I sat there. Edge of my seat, chewing my pen furiously, hoping that someone else would ask my question. Anyone? Anyone? The line at the microphone dwindled and still the same beat drummed on. Diagnosis. Therapy. Diagnosis. Therapy. It was nearly unbearable.
I'll ask my question in private, I thought. The meet and greet is the place for this kind of question anyway. There were just two people left at the microphone, then one, then none.
"Anybody else have a burning question?" a panelist asked.
And before my brain could stop them my feet ran up to the microphone, tripping on themselves on the way. The audience giggled, so I smiled and dropped a small curtsey.
"I guess I do," I said. "We've spent the last few hours discussing narrative as a diagnostic tool and narrative as a therapeutic tool, but I want to talk about narrative as an imaginative, creative, cultural force."
The panelists looked confused. And like they were about to start talking. So I pushed through and sped up.
"What I mean by that is...well, let me back up. My dad had Chronic, Neurological Lyme Disease and I'm an English PhD. student who almost went to med. school so I can't help thinking of story and medicine in similar terms...and I guess I've noticed...I've noticed that there's this medical canon just like there's a literary canon and some diseases count and some diseases don't count and it's been this way throughout history. And, at least right now, Lyme Disease isn't in the canon. So I'm wondering how and if individual stories of suffering can change that. I'm wondering how I can make my dad's suffering and my family's suffering count...because he was really sick and then he died and we never got any help. No one in the medical community helped us."
The room was silent and it felt like forever and then the devil's advocate cleared his throat and spoke. Which was too bad because I really needed an Emily's advocate just then.
"What an excellent question," he said. "Now, to be fair to the doctors, Lyme Disease is a highly-controversial diagnosis. Your dad may not have even had it, actually. But the question is a brilliant one and you're absolutely right. I distinctly remember, when I was in Kindergarten, my teacher didn't come back after the Christmas holiday, and all the grown-ups were whispering about her. It was...not spoken of. Cancer was a shameful thing that no one named. When we asked what happened to our teacher the grown-ups told us that 'something had eaten her up from the inside.' I mean, can you imagine?"
He looked at me for encouragement, so I nodded my head encouragingly.
"Can you even imagine how terrifying that was for us as children? So I completely understand the social stigma that can come with disease...and the need for...for social stories to combat that stigma. But Lyme...I mean. Chronic Lyme doesn't exist. I am sorry about your dad, though. Did that...did that answer your question?"
I was shaking and dumbfounded (don't you fucking cry in front of these professionals, you idiot) and stood there too quiet for a moment.
If I had been brave, I would have said no. He didn't answer my question.
If I had been brave, I would have told him that he dismissed it.
If I had been brave, I would have told the devil's advocate that I asked him about a problem I noticed with Lyme Disease in the present and he told me a story about Cancer in the 1950's.
If I had been brave, I would have told him that it's always easier to talk about how blind we used to be, and then pat ourselves on the back for our progress, than to take a good hard look at how blind we are.
And, if I had been really brave, I would have told him that I wasn't at a Narrative Medicine conference, that I hadn't started this search for meaning, because I was overly concerned about being fair to the doctors.
But I wasn't brave. Or I had used up all that I had at the moment so I nodded again and said: "Yes. Yes...thank you." And went back to my seat.
In the English language, we have a verb tense known as the Conditional, which consists of the helping verb "would" plus a "to be" verb.
Sometimes a conditional is paired with an "If" statement. English Literature is full of it. Especially poetry. And O'Connor.
Grammarians call this kind of construction Conditional III — pairing a an unreal past (the past perfect) in the "If" clause with the perfect conditional in the "Would" clause.
But that's a boring explanation. The poets call it the tense of regret. It is poetic. And painful.
Some languages don't have the conditional tense. No language for regret. And so I sat in my chair at that conference thinking about what that might be like. How would I live if I had no language for regret? Because people who have been in the Lyme Wars build entire lives in the conditional. And I've spent a lot of my own life wondering what would have happened.
If I had been brave.