We were living in Philadelphia with our twin 13-month-old daughters when one night I returned from the store to find my husband holding E, her face blue. Her arms and legs made a slow but steady jerk jerk jerk, only her eyes were closed and when we lifted her lids the pupils darted back and forth. I called 911 while my husband bent over, put his mouth over my daughter’s, and breathed.
But just like a story that I cannot forget, the moment that haunts me is E’s first seizure. I remember the sound of the approaching ambulance screaming down the street, the sight of my husband walking down the hall ramrod straight with our unconscious daughter in his arms.
I ran out in the hall, knocked on our neighbor’s door. Then another. Our other daughter was asleep in her crib. I waited for someone to answer their door, to ask, How can we help?
No one did.
Back in the apartment I walked from room to room balling my hands. There was a bank of walls along the east side of the apartment and I remember straining to see the ambulance as it traveled farther away with E inside. When it moved past Cherry Street, the wail faded, and I placed my hands on the window and cried.
After begging a dog sitter to stay with our other daughter, I rushed to the Children’s Hospital of Philadelphia. It was a Thursday night and the ER was quiet, the floors waxed a glossy sheen. They told me the room E was in and I moved quickly, the rooms clearly marked with numbers. There were seven or eight people surrounding a bed when I walked in. They were not talking. My husband stood at the side and in the middle of a hospital bed on a white starched sheet stretched our daughter. A clear ribbed tube extended from her mouth to a blue bag. Behind her a man in scrubs squeezed the bag every time she needed to take a breath. There were IVs in both arms, another thinner tube fixed beneath her nose, another tube that extended from her mouth hung on the wall behind her. It was magenta colored and later someone joked that when they pumped her stomach they tried to guess what it was she had eaten for dinner. Beets, I would tell them. They’d cut off her undershirt and it lay bunched around her like skin she’d shed.
It’s Mommy, Sweetpea, I said. Mommy’s here. Her blanket looked dingy under the harsh lights. Dirty. It covered the lower half of her body and nodes dotted her chest. What’s going on? I asked no one in particular. What happened? What is that thing in her mouth?
Everyone in the room was so quiet, deliberate, the space no larger than our galley kitchen. Still. Every movement hushed. That’s when my husband put his arm around me and led me out into the hall, a cold place neither here nor there, floors so shiny I could nearly see my reflection in them. I don’t understand, I said.
My daughter’s life—as well as my writing career—could have ended here. “You know we almost lost her,” my husband later said. Status epilepticus, the life-threatening seizure that E initially experienced, carries with it a high rate of mortality and neurologic deficits. If she hadn’t survived that life-threatening seizure, or if it had left her with neurological scars, my responsibilities as her mother might be vastly more complex. Still, her seizures have overshadowed every aspect of my early years as a parent and writer. Writing requires time and focus and as a parent to a child with health issues, I’m often challenged by conflicting needs. Yet dealing with these concerns has also expanded my worldview and transformed the way I approach my work. Writing—working toward a goal and identifying myself outside of my responsibilities as a parent—has become more important than ever.
My daughter has seized in the doctor’s office when they tried to measure her height and during a check-up when a doctor looked inside her ears with an otoscope. She has seized in the hospital, while at the neighborhood park next door, in our kitchen, her bedroom, in the bathroom, on the living room floor in the summer and in the winter while she was fighting a cold. One Mother’s Day, years ago, she went limp in my arms when I lifted her from her high chair.
She’s nine years old now and because her seizures are caused by breath-holding spells the doctors are hesitant to prescribe daily medication. I do however carry with me at all times a syringe pre-filled with medicine that can halt a seizure by relaxing her body. The major side effect of the Diastat is that it also suppresses respiration, making it difficult for E to breathe.
Every application of Diastat has resulted in a trip to the ER.
We have visited the ER many times.
Before my daughters arrived I squandered time. I read books from start to finish whether I felt drawn into the world of the story or not. I worked on short stories that were okay but could easily be put aside to check email or run an errand. I lacked dedication.
Parenthood changed that. So did the seizures.
As a preschooler, when I said goodbye to E she would cry and follow me to the door. No amount of back patting or hugging could calm her. As the red of her face deepened, and we crept closer to another breath-holding spell, the teacher would distract her and I would rush to my car. Once at the library, seated in a carrel, I would keep looking at my phone. Had E seized? Were they trying to reach me at that moment?
Morning was the only time free of such anxieties. I began to set my alarm hours before the rest of my family. I discovered that my ideas are clearest when I work before my day with my daughters (or anyone else) has begun. In the quiet dark of morning I was more focused and wrote only what appealed to me; every minute was precious. Seizures were always a possibility and life remained fragile. Though it had been years since I had published my first book, a collection of short stories, I vowed to keep writing.
The decisions I made at the start of each day were enough to urge me forward.
By taking note of what appeals to my imagination, I’ve learned to work on stories while waiting in line at the grocery store and snapping Legos together to make a ship. I can puzzle through a problem with my current project while folding socks and invoicing a freelance client. And when I get those ideas down, I let go of all expectations. In Bird by Bird Anne Lamott says all writers write “Shitty First Drafts” and has a chapter in her book titled as such. She goes on to say, “I know some very great writers, writers you love who write beautifully and have made a great deal of money and not one of them sits down routinely feeling wildly enthusiastic and confident.”
Throughout the writing of my novel I doubted my project and myself —some days more than others. Being a parent and an artist means embracing uncertainty and its sibling—fear. Elizabeth Gilbert’s thoughts in Big Magic: Creative Living Beyond Fear helped me see fear as something that can actually illuminate a writing project. Gilbert envisions fear and creativity as conjoined twins and makes space for the two to coexist. She even has a welcome speech prepared for any time she embarks on a new project:
Dearest Fear: Creativity and I are about to go on a road trip together. I understand you’ll be joining us, because you always do… There’s plenty of room in this vehicle for all of us, so make yourself at home, but understand this: Creativity and I are the only ones who will be making decisions along the way.
I’ve taken a cue from Gilbert and turned it up a notch—on days when I am most hampered by life’s concerns, I write a list of all my fears and on the opposing side try and refute them. Usually this activity shifts my headspace and allows me to re-center and return to the work at hand.
Just as I cannot know the outcome of the novel I am currently drafting, my daughter’s health also remains uncertain. Her seizures have grown less frequent and when they do happen, they are shorter in duration. Still, I wonder what her future holds. Someday she will drive alone on the highway. Someday she will lean in to kiss a significant other, breath momentarily halted. And someday she will leave us to attempt her own dreams.
Parenting and writing are chock-full of doubts and frustrations, stress and delight, but these challenges can also fuel a writer’s work by reminding us that writing is a choice like any other, and that uncertainty remains part of the process. I could have put my own dream aside and stopped writing on countless occasions—when a printed rejection arrived with one word underlined: NO or when I caught our sitter on FaceTime with a friend while my toddlers were alone in another room. But every time I sit down I face these fears head-on and write through them.
My daughters have complicated my life in useful and important ways. And on the good days, when I think about them as adults, I hope that through my example my daughters are learning that their needs and goals matter and are worth pursuing.
It’s a conviction I can’t imagine any of us living without.
Image Credit: Public Domain Pictures.
As an advocate for both books and therapy, I determined, upon first hearing the word “bibliotherapy,” that this might be my bespoke profession. I go to group therapy. I read a lot of novels. I’m constantly recommending novels to my group. Members struggling with various problems typically don’t count on me to empathize through personal experience. They count on me for book recommendations. Your adult son is an expat in Europe and is exploring his sexuality? See Caleb Crain’s Necessary Errors. You feel alienated from your wealthy family but drawn to nagging spiritual questions about existence? Walker Percy’s The Moviegoer is for you. Gutted by the loss of a loved one? You could do worse than James Agee’s A Death in the Family (Men’s therapy group, by the way).
The concept of bibliotherapy — a word coined in 1916 — long teetered on the edge of trendiness. But lately it has tilted toward truth. The highbrow media has weighed in favorably — consider Ceridwen Dovey’s much discussed New Yorker profile on The School of Life’s bibliotherapy team. And then the books: Azar Nafisi’s Reading Lolita in Tehran, Andy Miller’s The Year of Reading Dangerously, William Deresiewicz’s A Jane Austen Education and, perhaps most notably, The Novel Cure by Ella Berthoud and Susan Elderkin. Each book, to varying degrees, suggests connections between reading and happiness. A Google Scholar’s worth of criticism — my obscure favorite being Keith Oatley’s “Why Fiction May Be Twice as True as Fact: Fiction as Cognitive and Emotional Simulation” (pdf) — has lent the idea scholarly heft. To be clear: nobody is arguing that reading books is a substitute for the medication required to treat acute mental illness. But the notion that novels might have a genuine therapeutic benefit for certain kinds of spiritual ailments seems legit.
If we concede that books can be therapeutic, then it seems appropriate to explore the potential pitfalls of asking literature to serve that cause. Of initial concern is the inherent presumptuousness of the endeavor. When I advise my fellow group therapy members — whom I know as intimately as I know anyone, if intimacy is defined by the sharing of anxiety, fear, and grief — what they should read, the assumption is that I’m able to divine how my interpretation of a novel will intersect with their predicted interpretations of the same novel. If reception theory tells us anything, it’s that this kind of interpretive foretelling, especially when refracted through the radically subjectivity of a novel, is a matter of great uncertainty, and maybe even an implicit form of lit bullying (“What? You didn’t pick up on that theme? What’s the matter with you?).
Plus, novels don’t work this way. They aren’t narrative prescriptions. Even when done badly, novels are artistic expressions necessarily unmoored from reality, expressions that ultimately depend on idiosyncratic characters who act, think, and feel, thereby becoming emotionally, psychologically, intellectually, and even physically embodied — quite differently — in every reader’s mind. Yes, The Great Gatsby has universal appeal. But there’s a unique Gatsby for every reader who has passed eyes over the book. (Maybe even Donald Trump has one: “not great, not great; an overrated loser.”) Given the tenuousness and variability of this personal act of translation, it’s hard not to wonder: How could anyone expect to intuit how anyone else might react to certain characters in certain settings under certain circumstances?
In The Novel Cure, Berthoud and Elderkin aren’t hampered by this question. They match personal contemporary ailments with common literary themes as if they were complementary puzzle pieces. They do so under the assumption that the mere presence of a literary counterpart to a contemporary dilemma automatically imbues a novel with therapeutic agency. They advise that a person dealing with adultery in real life might want to read Madame Bovary. Or that someone who struggles to reach orgasm should read Lady Chatterly’s Lover. Does this kind of advice make any sense?
Consider the adultery example. How can Berthoud and Elderkin assess exactly how novelistic adultery will be translated into thoughts and feelings about something as deeply contextualized as real life adultery? How can they assess if it will be translated at all? Think of all the possible reactions. Use your imagination. A contemporary cuckold could go off the rails at any juncture in the Bovary narrative. He could become so immensely interested in Gustave Flaubert’s intimately detailed portrait of 19th-century provincial life, and the people in it, that he eventually finds the cuckolding theme a distraction, finishes the novel, quits his high paying job, and commits himself to a graduate program in French social history. Books have driven people to do stranger things. Sure it’s unlikely, but my point is this: Telling someone precisely what to take from a novel, based on the superficiality of a shared event, isn’t therapeutic. It’s fascist. A repression of a more genuine response.
More interesting would be to reverse the bibliotherapeutic premise altogether. Instead of asking “what’s wrong with you?” and assigning a book, assign a book and ask “what’s wrong with you?” When I lend books to friends outside of therapy, this strategy (upon reflection) is basically what I’m testing. I’m not trying to solve a person’s problem. I’m trying, in a way, to create one. I want to shake someone out of complacency. Great novels (and sometimes not so great ones) jar us, often unexpectedly. Ever have a novel sneak upon you and kick you in the gut, leaving you staring into space, dazed by an epiphany? Yes. Novels do this. They present obstacles that elicit the catharsis (from katharo, which means clearing obstacles) we didn’t think we needed. We should allow books to cause more trouble in our lives.
But the sanguine bibliotherapeutic mission will have none of that. Its premise is to take down obstacles and march us towards happiness. Proof is how easily this genre of therapy veers into self-help territory. The New York Public Library’s “Bibliotherapy” page suggests that readers check out David Brooks’s The Road to Character, Cheryl Strayed’s Brave Enough, and Elizabeth Gilbert’s Big Magic: Creative Living Beyond Fear. These books are assuredly smart books by smart writers, all of whom I admire. But the goal of this type of book is to help readers find some kind of stability. There’s obviously nothing wrong with that. But the problem from the perspective of literary fiction is that such “self-improvement” books seek to tamp down the very human emotions that literature dines out on: fear, insecurity, vulnerability, and the willingness to take strange paths to strange places. Imagine reading Fyodor Dostoyevsky’s Crime and Punishment without being at least little off kilter. You’d shut the book the moment Raskolnikov committed his murder. Being moved by fiction means being willing to be led astray a little. It helps if your rules are not ordinary.
It also seems prudent to wonder how the bibliotherapeutic pharmacy would bottle up the work of certain writers. Would it do so in a way that excludes literary genius? Almost assuredly it would. Cormac McCarthy, whom many critics consider one of the greatest writers ever — appears three times in The Novel Cure. Predictably, The Road is mentioned as a way to (a) gain insight into fatherhood and (b) achieve brevity of expression. That’s it — all talk of apocalypse and the survival instinct as integral influences on human morality is brushed aside. Inexplicably, Blood Meridian is listed as a book that sheds light on the challenge of going cold turkey. I have no idea here. None. But I do know that if you are a reader who grasps the totality of McCarthy’s work, your literary soul, as Cormac might put it, is drowning in a cesspool of roiling bile.
Because here is what bibliotherapy, as it’s now defined, has no use for: darkness. Real darkness. McCarthy’s greatest literary accomplishment is arguably Suttree, the culmination of a series of “Tennessee novels” that dealt in chilling forms of deviance — incest, necrophilia, self-imposed social alienation — that, on every page, sully the reader’s sense of decency. McCarthy’s greatest narrative accomplishment was likely No Country for Old Men, a blood splattered thriller that features a psychopath who kills random innocent people with a captive bolt pistol. These works, much like the work of Henry Miller (none of whose sex-fueled books get mentioned in The Novel Cure), aestheticize evil — in this case violence and misogynistic sex — into brilliant forms of literary beauty. They are tremendously important and profoundly gorgeous books, albeit in very disturbing ways. They are more likely to send you into therapy than practice it.
The good news for bibliotherapy is that there are too many hardcore fiction readers who know all too well that concerted reading enhances the quality of their lives. A single book might destabilize, tottering you into emotional turmoil. But books — collectively consumed through the steady focus of serious reading — undoubtedly have for many readers a comforting, even therapeutic, effect. This brand of bibliotherapy, a brand born of ongoing submission to great literature — not unlike traditional therapy — does not necessarily seek to solve specific problems. (In my group therapy, members have been dealing with the same unresolved issues for years. We define each other by them.) Instead, what evolves through both consistent reading and therapy is a deep, even profound, understanding of the dramas that underscore the challenges of being human in the modern world.
So, despite my concerns, I remain a believer in bibliotherapy. But its goal should not necessarily be to make us feel better. It should be to make us feel more, to feel deeper, to feel more honestly. In this respect, quality literature, no matter what the subject matter, slows the world down for us, gives us time to place a microscope over its defining events, and urges us to ask, what’s going on here, what does it mean, why do I care, and how do I feel? That might not qualify as formal therapy, but it’s a good place to start.
Image Credit: Pixabay.