A member of the Akwesasne Kenien’kehá:ka (St. Regis Mohawk Tribe), Aaron John Curtis is an author, blogger, bookseller, and avid reader. He wrote a monthly column called “Book Junky” for Moxxi Magazine and also wrote essays and reviews for Miami blog collective The Heat Lightning. His essay “Past the Flesh” appeared in The Sun Sentinel’s City Link Magazine, and his love letter to Florida – “It Grows on You” – was published in World Book Night’s first ebook. He has a story in the collection “Badass: Lip Service True Stories” from Lominy Press. In addition to numerous appearances with Lip Service, you may have heard him on the Writing Class Radio Podcast and WLRN’s Under the Sun. He’s worked at Books & Books, your local, independent bookstore, since 2004.
Aaron was diagnosed with cutaneous polyarteritis nodosa, a rare disease, in 2015. Like many people with rare diseases, his path to a diagnosis wasn’t routine. His tests kept coming back normal, even though it was clear that something was wrong. Finally, after lots of additional testing and biopsying, a team of doctors was able to put a name to his symptoms. He felt relief, but he was also left with the task of managing his painful flare-ups while working full-time and also pursuing a writing career.
On this episode, Aaron and I talk about the adjustments he has made in his life and work to help manage his illness, what prompted him to start writing about his symptoms, and why the spoon theory resonates so strongly with him.
Here are some of the things Aaron and I chatted about:
His longtime role as a buyer at Books & Books in Miami (one of my favorite bookstores)
Why a writing workshop prompt provided the spark for him to start writing about his illness
The long journey to his diagnosis of cutaneous polyarteritis nodosa (known as CPAN)
The extensive testing and biopsying he required to determine a cause behind his symptoms
The specific challenges for both patients and doctors surrounding rare diseases
His prior experience navigating the lifestyle changes a serious diagnosis can bring
What happens during a flare-up and why each occurrence is different and unpredictable
Why he loves the spoon theory as a shorthand way of explaining chronic illness
The adjustments he made at work after his diagnosis so he had fewer grueling days
Why the physically demanding aspects of his job actually help keep his health on track
Looking ahead, his hopes for his essays about illness and his fiction writing
His involvement with Writing Class Radio (another podcast I’m obsessed with)