Writing from a Pile of Shoes: Chronic Illness, Kids, and Creation

When I was diagnosed with Crohn’s Disease, my children were 7 and 15 years old. I was newly divorced, and I had just finished a book tour. I spent a week in the hospital in Philadelphia before I could fly back to Seattle; there I was wheeled to baggage check to meet my brother, who drove me home. I had so little energy I felt like a reptile that must lie in the sun to raise its internal body temperature. I had lost 30 pounds in the last few months, and my family doctor was running tests to rule out cancer by the time I was hospitalized far from home. My children were badly frightened when I arrived, and though my mother and my best friend came by often, I was on my own to navigate meals and meds. My ex counted the number of days I had missed in our childcare schedule while hospitalized and asked me to make them up. Fortunately, my job as a professor at a state college afforded me an academic quarter of medical leave.

The biggest obstacle for me and my children, every day, was trust—trusting that I would get better. My daughter woke up at all hours with bad dreams and lived in my bed with me. My son’s temper flared easily. He socked holes in the walls, cried as he patched them, and spent a lot of time with his stoner friends. Our anxieties spiked off each other’s. My children hated the uncertainty. So did I. I had no history with this illness, no track record of recovering from flare-ups. Still, I gave them all the reassurance I could.

Although I was out of the hospital and off IV antibiotics, I was in no way well. There isn’t a ladylike way to talk about having inflammatory bowel disease, but suffice it to say that the protagonist of my autobiographical novel, Take Daily As Needed, identifies with the 19th-century polar explorers who contracted trichinosis from eating uncooked polar bear meat and died of dysentery. I became anemic from loss of blood and developed a secondary condition, interstitial cystitis, which made my bladder feel as though it were packed with ground glass. There’s a form of arthritis associated with IBD, and that was the worst for me, beyond the nausea, gut cramping, and fatigue. The ache in my bones turned the world monochrome. Like the high whine of a drill, it commandeered my attention. I functioned on six medications and was so distracted by pain that one day, I left the car out of gear in the driveway. It took out a neighbor’s hedge before I could catch up to it.

I was still determined to complete the blog tour that I had set up for my book. I needed distraction. After the children left for school, I arose to perform a persona, pitching my novel to book review blogs. The glamorous author in the photo looked to me like a person I had never met. When I wasn’t working or resting, I was trying to research how to hold my family together in the midst of my medical crisis. The few books on parenting with illness that I could find painted a portrait of reasonable children who were reassured when told that their routines wouldn’t be disrupted and Mommy would, with rest, get better. My children had other needs. Daily, they would provoke me to my feet, and it seemed they were not satisfied until they saw a full show of force. This was what reassured them—shouting, slamming of doors, crashing of dishes.  

Somehow in that little ranch house beneath the towering pines, we learned how to live with illness together. I make a bad Buddhist in the best of circumstances, but I had started attending the services of a local spiritual center. The Reverend Jane taught me that I could rest at the bottom of my breath, if nowhere else. I needed to find that pause before responding to my kids. I do remember times of great tenderness: my daughter climbing into my bed to tell me fairy tales, my son flopping facedown and offering to get me stoned, which he viewed as the panacea to everything. I remember their faces up close, the chance to dwell on their features and expressions as I hadn’t since they were swaddled babes. Our domestic routines were anything but routine: my daughter filled the dishwasher with liquid soap; my son tried to run the Weed eater and threw it into the bushes. Hilarious, really, if I’d had resilience enough to laugh.

What got me through this time was affirmative prayer and writing—writing because my journal acted as a deep well into which I dropped my flaming fears, knowing that their power to burn me would be extinguished. And because I had a long tradition of keeping journals, every entry was a whisper to my future, a quiet proclamation that I would and could keep going, for my children, for myself.

Three years later, I returned to writing short stories. I had gotten better at energy management, and my kids, who were initially unwilling to give up their over-functioning mom, had learned to pick up the slack. In fairness to them, they hated it when I ran my energy out to the end and cried. They couldn’t stand my martyrdom. They didn’t want to hear that I was in pain, but if I told them what I needed them to do and let them choose a reasonable time frame, they were generally amenable. By then we were living in a rental house outside of town, and I was on a part-time medical leave for spring quarter. My doctor was managing my flare-up with “prednisone and rest,” which is a contradiction in terms, as anyone who has been on corticosteroids will attest. I had manic morning energy and scrawled down the pages of a legal pad on my lap. At the time, I had no idea that the stories I was writing would eventually form a linked collection, or, as my publisher calls it, “a novel-in-stories.”

The voice of the mother definitely came first. I wanted to write her voice as realistic, intelligent, compassionate, and questioning of contemporary culture. Mothers have for so long been idealized or villainized—we are recovering from years of Freudian influence in that regard. I wanted this mother to be genuine. Once I hear a character, I write until I have the whole of it. The mother’s stories kept on coming. 

Still, the novel, Take Daily As Needed, took me seven years to write. I was able to go back to teaching full time, toggling between weekend flares of Crohn’s disease and the Monday morning routine: “Get up and do it again. Amen.” My life was pretty chaotic, but I found inspiration in a pile of shoes. 

When my son was 17, I would go downstairs in the morning and count the pairs of shoes piled by the backdoor to figure out how many kids had spent the night on the floor of my son’s room. I ran an open house for teenagers, believing it was better they were safe with me than out roaming the streets. Half of them had been kicked out of their homes and the other half had run away. These were my son’s friends, and I made good use of them, requesting they bring in the groceries, or resupply the woodstove, or walk the dog. One young man who often spent the night was the son of a friend of mine who had multiple sclerosis. Our boys had gone to preschool together. Tamara vowed she would make it until he graduated from high school, and she did, though she died later that year. As I grieved for her, I began looking for fiction that featured sick mothers trying to raise kids. I couldn’t find much, and I wondered who would want to read it besides me, but decided I didn’t care and wrote a story called, “The No-Tell Hotel”. The culminating scene takes place in the home of the boy who has abandoned his mother with MS as she and the narrator wait for an ambulance.

“The No-Tell Hotel” was a tribute to my friend. It became the backdoor to my book, and the pile of shoes beside it were claimed by my characters, who stepped out and moved off into their own storylines. Though my favorite characters were the teenagers, whom I loved for their intractable and impractical nonconformity, I found myself staying with the mother character whose autoimmune disease goes in and out of remission, as mine does. I wrote none of the stories in order—some were about her father who had suffered a traumatic brain injury after taking Viagra and taking a fall; some were about her daughter whose severe food allergies sent them on multiple ambulance rides; some were about her son who flushed his psychoactive medications down the toilet. I wrote them as they came to me because I had a need and I had driving questions: How much caregiving can any one woman do without breaking down? Why do women seem so often to be the caregivers? What becomes of us when we are too ill to work? In my research, I learned that 75 percent of the 50 million Americans with autoimmune diseases are women.

During these years, my father was also battling his own disability; a traumatic brain injury had damaged his memory and executive function. I traveled as often as I could to my fiancé’s in Berkeley, then white-knuckled the drive to Cupertino in order to sort out my dad’s affairs. He was spending his retirement fund on high-ticket items he didn’t need and didn’t remember ordering. I’d open a closet and discover a stack of computers floor to ceiling, all the same model. Ditto binoculars under the bed and shoeboxes full of watches and telescope lenses and Crock-Pots and panini grills. At one point, he bought a condo for his girlfriend (the bank was only too happy to make him a loan), but he forgot to sell his own place, and when I arrived, both mortgages were in arrears. 

My children were struggling in school, seeing doctors and therapists, while I was still on a steep learning curve with my own illness. The answer to everything seemed to be pills. I knew then that I wanted to commit to a novel-in-stories, one that dealt honestly and humorously with medicated American life. 

Fortunately, my father died before his money ran out. I carried his tennis shoes with the socks tucked inside them from the backdoor to the trash can. And then I wrote stories based on his character. Like the teenagers at my house, my father didn’t end up on the street, but he could have. For myself, I feared that I wouldn’t be able to go back to work, and I learned that disability benefits, if you can get them, amount to so little that they’re a direct route to poverty. People waiting for a Social Security disability determination lose their homes, their medical insurance, and their savings. I knew this because my friend with MS frequented the food bank. So, I wrote fueled by fear, and the teenagers, who were already afraid of adulthood, made me laugh by hanging spoons in the chandelier and hiding beer cans in the bathroom drawers.

From my bed, I began to see some stories pair up just as siblings do at family parties. When I wrote the sister character for the brother, one who has anaphylactic food allergies like my own daughter, I realized that I had never read a story about a child traumatized by her own allergies, a child who decided to quit eating at age four as a way of forestalling further ER visits and brushes with mortality. Wait, I thought, that’s just too much affliction for one family. But it was true of mine, so I kept going until finally it was time to line those shoes up and unknot the laces, to impose some chronological order on the stories and make sure I had the names and ages right throughout. The advantage of writing a novel-in-stories was that I came to see the arc slowly as the protagonist’s children matured from age 4 to 18. It was like seeing a bridge through a scrim of fog and then suddenly being able to cross it.

After a continuity edit, I sent the collection out for three years until finally it arrived in the hands of Elise McHugh at the University of New Mexico Press. She told me that one story had to go and another needed to be written in order for the manuscript to be a complete book. When I pulled that one story out and added one story in, I heard a sound like the snap a deck of cards makes when shuffled into place. It was done. But for me, the central image of Take Daily As Needed will always be those shoes by the backdoor—some worn at the sole, some high at the heel—and the sleeping children, so many of whom live in homes of affliction and despair. I have hope for those kids. I have hope for their parents.

It seems strange to me now that I ever questioned whether illness was a subject worthy of literary fiction, given that the great American debate at present is health care. Still, we are a society preoccupied with achievement and speed, with an ever-ascendant narrative that leaves other people behind to roll down to rock bottom. Storytelling, however, is all about the circle, and anyone is welcome to sit at it. So, I hope that some other writer reading this, perhaps also lacking the stamina for a conventional novel and wondering who will want to read her work, might feel emboldened to start, because stories of illness are also about unconventionality, humor, and the durability of love.