Everything’s Coming Up Photocopies: Medical Records for the Writing Process

By Alysia Sawchyn

I was nineteen, maybe twenty, the first time I requested my medical records. Back then, I was still on my parents’ insurance, and they were filing a claim, hoping to be reimbursed, at least in part, for the expensive drug rehab where they’d sent me. It was a facile experience; I barely lifted a finger. My role was a HIPAA formality—I (resentfully) waved at the familiar receptionist, doctors, and nurses and said, Yes, my parents can access my medical records. The staff presented my father with a thick manila envelope, and I practically skipped out the front door, still enjoying my freedoms. Nothing to it.

Seven-ish years later, I started writing a book about my mental health diagnoses and misdiagnoses, which eventually became A Fish Growing Lungs.  My memory is not great (see rehab above), and some of the dates, appointments, facilities, and doctors muddled together, making drafting difficult. I wanted specifics, and my old medical records would be able to provide at least some particulars, untainted by time. I envisioned the recorded dates like scaffolding around which I could build a structure made of memory.

The list of doctors and institutions I drafted was daunting both because of its length and its incompleteness. I live by my checklists, and excerpts of this one read like a classified document:

• (firstname?) Jones — psychiatrist, private practice? NoVA, 2004/2005-2006
• Psych ward doctor — Psych ward (??), state run? NoVA, March 11? 2007
• Doctor? NP? — Clinic, Greensboro, NC, March/April? 2007
• (firstname) Sharif & Dr. Jarod Diaz — psychiatrists, Rolling Hills Treatment, Clearwater, May 1-30 2007?

Imagine calling a doctor’s office and saying something like, Hi, yes, I think I was a patient at your institution seven-ish years ago, could you please check if I was actually there and, if so, could you please send me copies of my medical records? The process was an odd mix of social engineering and verifying my own identity eight different ways on a phone line.

Only one acquisition was relatively straightforward: My longest-standing former psychiatrist (whose name I remember and who hadn’t moved offices or closed their practice) immediately said, Yes, and hardcopies were available for me to pick up the next day. I think he may have even waived the fee.

The rest of the items on my checklist were a mix of awkward; unattainable; or achieved only by sheer, dumb luck. One of my former therapists basically said, Ugh, do I have to; they’re somewhere in my storage unit, and at that time I still had not yet had enough therapy to say, Yes, Jennifer, please go get my goddamn medical records.

*

Much harder than acquiring my medical records was reading them. Writing personal essay necessitates constructing a persona on the page, and while I am accustomed to trying to make sense of my past self, this added another layer of complexity. This was me trying to make sense of how others had made sense of me. Reading the documents felt like handling a nesting doll made out of so many jellyfish. My first few attempts ended with me shoving the stacks of paper under my bed and going outside to smoke. The solution I ultimately settled on (after having to reorder the documents a few times) was to camp out on my balcony with a pack of cigarettes and chain-smoke my way through the folders. It wasn’t graceful. To see oneself through the eyes of others is charming when you’ve just started dating; it’s markedly less so when you’re having a psychotic break in the ER.

Earlier drafts of Fish relied heavily on these doctors’ notes. I incorporated direct quotes into several different essays, and one was entirely devoted to the nuances of my diagnoses juxtaposed against sections of previous and current versions of the DSM. Over the course of about a year, different readers of that particular essay, creatively titled “Diagnosis,” flagged it as bulky and dragging, and each time I made appreciative mhmm sounds before hoping the next reader would say something different.

I tell people I am a slow writer because I need lots of time between drafts to be able to see what I’ve actually written, instead of what I’d wanted to write. A lot of scholarly work exists around illness narratives—the hows and whys of their construction; their benefits and potential pitfalls, both for the author and audience; how they can inadvertently reinforce medical institutions’ granting power of legitimacy—but I’m going to leave all that aside and say that, in the end, I cut “Diagnosis,” salvaging only a few darling phrases to sprinkle throughout the remaining essays.

When I was finally able to set my manuscript aside for half a year, I returned to it to find that I agreed with my earlier readers’ comments. What I found was not an essay that added to the collection, but a document I’d created in order to write all the other essays around it. “Diagnosis” was how I’d made sense of how others had made sense of me; the only way I knew how to unpack those pesky, slippery dolls was to write them out.

The moral of this is not “Do whatever your readers tell you to do” (though I did have excellent readers). The moral is “It takes every word it takes.” Today, my medical records are in a plastic bin in my attic crawlspace labeled “BOOK 1,” alongside all the other articles and handouts and lists and notes I read and made for Fish—not dogma, but just another type of source material. I had to read and write every sentence to get to the end. All this digging and drafting happens not because everything I uncover should make its way into the final written product, but because the process is the bulk of the work, and thus, where the bulk of the joy resides.
__

Alysia Sawchyn is a Features Editor at The Rumpus. Her essay collection about misdiagnosed mental illness, A Fish Growing Lungs, was published by Burrow Press in June 2020. You can find her on Twitter @happiestwerther

**

This Blog essay is part of our September 2020 special focus on Experiences of Disability. Read our guest-edited special issue of the magazine for more.

On Research, Writing, and the “Rambling Path”

By Allison Coffelt

“Excuse me.  Can I ask you a few questions?” I say as I walk up to someone.  “I’m here doing some,” I flip open my black, two-fold wallet. The camera cuts to a close-up of a glinting gold badge.  “Research.”

This is how I sometimes imagine it, as a cheesy crime drama, with research as my credential.  I love research.  I love research so, so much.  Though it took me a while, now I even love to call it research; there is power in that label, and the way it offers me a little extra confidence to walk around, asking better questions.  A walk in the woods trying to improve plant identification?  Research.  A trip to the museum?  Research.  A rock concert? Sure; that’s research.  I never quite know what I’ll need until I’m writing, so really, I could argue that everything is research.  Though I do stop short of labeling all as such: For me, anything can be research, but not everything is.  To be clear: everything is fair game.  All the notebooks, lived experiences, dialogue.  But I choose not to call everything research because I fear confusing it with awake-ness, with just learning the plant names to learn them, and to better notice and articulate to a friend the delight of the pawpaws.  Instead, I use the term “research” when I need that little kick to get going.  When I know I want to do something or go somewhere, but for whatever reason, I’m holding myself back.  Research becomes, for me, a license to be the most curious version of myself.

“I’m arguing for a rambling path,” Joni Tevis said in our panel, The Dividing Line: Blending Research in Personal Narratives at the 2018 Annual Conference of the Association of Writers and Writing Programs.  Is the rambling path different than the rabbit hole? I’m not sure.  One of the riddles that arose in our conversation was, how do you know when it’s enough? In the midst of researching, it can be hard to recognize if the deep dive is avoidance of writing and/or if it’s productive. (Sometimes it’s “yes and.”) This is when Joni’s advocacy comes in handy – granting permission, even encouraging the rambling path.  I’d add, too, that learning to discern between seeking distraction and seeking information involves knowing oneself: how does the mind feel when it’s longing for interruption? Is that the sensation I’m chasing right now, as I open yet another tab on my browser? Put another way: am I combing through microfiche or scouring YouTube because I’m avoiding listening to the rhythm of a sentence?  If the answer is yes, then perhaps it’s time for a gentle redirection back to the page.  If the answer is yes and (I need to know), it’s harder to say. But practicing asking the question has felt helpful to me over the years of writing.

That concept of “enough” can feel so tricky.  What if the question about research isn’t, “when do I know I have enough?” but “When do I think I have enough to start?” Once I begin writing, I continue to discover gaps.  And so, research becomes a circular dance: write, think, go beyond the self, think, write, shape better questions, go beyond the self.  I had a professor in graduate school who had advice for seminar papers that I think extends to other realms: Start before you think you’re ready.

Which brings us to fear.  In our AWP panel, I noticed a particular kind of fear laced into the Q&A: a fear of theft.  I’m scared of this, too – we’ve all heard the horror stories of plagiarism that end in public humiliation and shame.  How do you keep track? someone asked.  How do you make sure your sources, especially online sources, don’t disappear?  Jon Pineda, the panel organizer, talked about how he has his students create a blog over the course of the semester where they collect all of the articles and sources.  I like this idea because it allows you to capture multimedia in a notebook-of-sorts.  Personally, I’ve found Scrivener’s tools to be crucial as I wrote my first book – Maps Are Lines We Draw: A Road Trip Through Haiti – because I could store photos, videos, audio files, photocopies of notes, and save caches of websites (see photo to the left) lest the sites themselves hange or disappear.

Regardless of the tool, one way to approach this fear seems to be organization.  I learned this most acutely in an audio storytelling workshop: there are concrete steps to save the individual files, and then there are guiding principles for working with multiple tracks, creating banks of sound, and more.  But ultimately, you have to have everything saved and you have to know where everything is (or at least, be able to find it).  You can design a system that serves you.

One of the best systems, of course, being the library.  On our panel, Colin Rafferty shared the magic of the Federal Depository Library Program, which distributes Government Printing Office documents to every Regional Depository Library – and the GPO prints a lot of documents.  (It’s the largest publisher in the world.)  These Regional Depository Libraries include, as Colin said, “any land-grant college or university, any federal agency library, any accredited law school, and the highest appellate court in your state.  Best of all, depository libraries are open to the public, even when housed at a private institution.” What’s in depository libraries? The Catalog of US Government Publications, for one, which is chalk-full of strange facts and overlooked histories, waiting to be read.

Research is fraught – and so is writing.  They can both be a discovery process for the writer.  They’re both practices that can embolden, inform, ensnare, and uncover.  We might not always like what we find, but for me, it’s always worth the search.
__

Allison Coffelt lives and writes in Columbia, Missouri.  Her first book, Maps Are Lines We Draw: A Road Trip Through Haiti, explores a decade-long interest in Haiti and interrogates the line between here and there.  Her work has appeared in the Los Angeles Review of Books, Hippocampus, the Crab Orchard Review, and elsewhere.  She serves as the Education & Outreach Director and podcast host for True/False, a nonfiction film festival.  You can find more about her work at allisoncoffelt.com.