Jay Vera Summer on Writing and Chronic Illness

Interview with Jay Summer

What inspired you to propose and teach your upcoming class, Creative Writing through Chronic Illness?

Many people with chronic or mental illness have journaled about their experiences at some point, perhaps after reading an article about the benefits of journaling or receiving advice to do so from a therapist. I created this class to encourage people to take their budding writing practice to the next level, to dip a toe into intentionally crafting words about illness experiences that may later be shared with an audience. 

Journaling can be immensely helpful—in fact, I do it every morning—but it doesn't usually involve intention about the form the writing takes or how to describe events, thoughts, and feelings in ways that will move a reader. I created this class to help people consider the various forms their personal chronic illness stories may take.

2. Your class description says that because chronic illness is by definition ongoing, writing about it often subverts traditional narrative. Who are some of your favorite writers that exemplify this subversion?

Ever since I first read Sonya Huber's book Pain Woman Takes Your Keys and Other Essays from a Nervous System in 2018, I've been unable to shut up about it. I cried many times while reading it and immediately began rereading it the second I finished. Some of the essays in this collection are available online, including "What Pain Wants" (search "Sonya Huber" to find it on the page), "The Lava Lamp of Pain," and "The Status of Pain."

Another book I recommend is The Collected Schizophrenias, by Esmé Weijun Wang. Mental illness is a type of chronic illness, and in this book, Wang describes her experiences with schizoaffective disorder. As the reader, we see her symptoms wax and wane, how she is treated by different people and organizations, and what she must do over time to manage this illness that isn't simply going to go away.

Finally, I recently interviewed author Heather Kamin, who wrote the YA novel The Moth Girl. This novel is about a high school student who develops a fantastical illness that makes her float. Although it sounds out there, the book felt so incredibly relatable to me—Anna, the main character, neither "fights" nor "succumbs" to her illness, but must work to figure out how to build a new life in light of her new symptoms.

3. What are the goals you have for students who take this class?

My hope is that by learning about and trying out a variety of writing forms, students will find one (or more!) that feels right to them, something that they want to explore further after the course ends. Each week of this course focuses on a different genre—in order, we'll explore comics, poetry, fiction, and creative non-fiction. 

We'll read short examples of published chronic illness-related work in the genre of the week, do free writes together in-class, and discuss craft techniques related to that genre. For each genre, I'll also share a list of recommended reading that can be explored later. 

I hope each student walks away at the end of our four weeks together feeling excited and inspired to learn more about and practice in whichever forms felt most appealing to them.

4. Finally, and quite unfortunately, the pandemic has added millions more to the list of people managing chronic illness. How might someone newly dealing with this reality know if a class like this would be a good fit for them?

I think people with long-COVID and those who have developed an illness in COVID's wake, like POTS or ME/CFS, would absolutely benefit from taking this course if they have an interest in creative writing. As a society, we desperately need these long-COVID stories being told. 

COVID-19 is considered a "mass-disabling event" and, as a society, we are still struggling to determine our response to it. The telling of these stories in aggregate at this point in time could literally influence the future of public policy, the future of healthcare in the U.S., and how our society responds to chronic illness and disability more generally.

I didn't identify as someone with a "chronic illness" until I'd had one for several years, and this seems to be true of many people. If anyone who has long-COVID symptoms is hesitant to take this course because they don't label themselves as "chronically ill"—maybe because they've only been sick for six months or a year, or they're hoping for a full recovery, etc.—they are still more than welcome to take the class.