Folsom author spotlights chronic illness in new book

Kelly Esparza has an infectious laugh, usually punctuating the end of her sentences with a light chuckle brimming with positivity. An avid reader, she's a book and magazine editor who earned her Bachelor's degrees in English and Creative Writing before the age of 30. She talks about writing and the therapeutic value in doing it; she has authored a couple of fictional mystery stories geared to young adults, but her latest work is something quite special. "A Spoonie's Guide to Self-Acceptance" is a collection of more than 20 poems she's written over the course of a year and a half. No matter what genre Esparza is working in, pieces of her own story still end up in it. "Writing helps me to grieve," she says. "It gives me a cathartic way to process." Esparza, of Folsom, is a natural talker. When not waxing philosophically on how writing has been a huge part of life since she was a little girl – "I was always writing stories" – she fluidly pivots to the fun she's having running her magazine "FLARE," a publication which began earlier this year dealing with mental health struggles and chronic illness. This is when the conversation takes a shift. Esparza brings up how – to her – writing poetry is uplifting. She says she wanted her poetry to feel different than other poets' work, which sometimes feels more pessimistic. Her poetry book is a way of detailing her journey. And it was a way of working out her walk with her own illness. In the early part of 2024, Esparza noticed she felt more strained than usual. An avid runner who was physically active, she decided to get checked out. Over the course of the next several months, she and her primary care physician – and later her rheumatologist – would try to rule out any and all possibilities, with the pain, fatigue and immobility never letting up. For anyone who's had to play detective with their own medical condition, the lack of answers is almost worse than when you finally get one. In Esparza's case, it didn't matter much – she was ultimately diagnosed with lupus. And everything changed. "When I was first diagnosed, I tried to look for information everywhere, but there wasn't a lot," she said. This would prove motivational. The online definition of lupus is "a chronic, long-term autoimmune disease where the body's immune system mistakenly attacks its own healthy cells and tissues, leading to inflammation and damage in various parts of the body, including the joints, skin, kidneys, heart, lungs, and brain." Esparza says the term is actually more of an umbrella for many things. "For me, it feels like I am a 28-year-old in an 88-year-old's body," she said. "It means that I have to plan out my days and meter my energy level." She mentions Spoon Theory, a concept developed in the early aughts to describe how those with chronic illness navigate the daily process of conserving energy, as a useful tool. In theory, a person living with lupus or any chronic illness has a certain amount of energy per day they start with. These are rationed by spoonful – so a person may describe their energy level as having about 10 spoonfuls on any given day. Each task to be done that day depletes a certain amount of spoons of energy; so a person may decide one task over another, depending on how they're feeling, plus the amount of energy it would take to complete it. The process is arduous, and it's something many people don't have to think about, whereas someone with chronic pain like Esparza – who during the onset couldn't walk – needs to go through this process to essentially live every day. There's a level of compassion that radiates in Esparza's writing. It's a two-way street in a world which sometimes seems too bleak and dark for its own good. Compassion expressed is really a question to others on how they want to show up for someone dealing with things they wouldn't understand. When she talks about her writing, she characterizes it more as a function of who she is, even though it serves as a messenger of what she's going through and a therapist for the daily endurance of it. "I hope my future books inspire other writers and also create empathy for people who are chronically ill," she says. But, while her work shows a writer's experience, it does not define her by what she's dealing with. Writers like Esparza, who put themselves out there as beacons for others, can transcend their limitations, engaging with their imaginations and soaring beyond circumstance, time and chance. So for her, living with a debilitating chronic illness has not stopped her from living her life but given it new meaning. Whatever a person deals with is not ultimately who they are; who they are is shown in how they continue on. One of her favorite quotes is from Gandhi: "Be the change you wish to see in the world." For Kelly Esparza, in the face of adversity, she's chosen to write her own story. Order "A Spoonie's Guide to Self-Acceptance" at https://bottlecap.press/collections/bottlecap-features/products/aspoke. Also, check out her website and "FLARE" magazine at https://flaremagazinecom.wordpress.com/.