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The E-word

I had a seizure a little over a week ago.

If you’ve followed my writing for a while, you know that I have suffered from periodic seizures since my oldest daughter was born almost twelve years ago.

I’ve been very lucky in that four years have passed since my last seizure, but the feelings that emerge in its wake are all too familiar: loss, grief, fear.


To be somewhere one minute, safe and comfortable (my bed, the couch, even in my husband’s arms) and then to awaken moments later on the other side of a black void of unconsciousness—it’s like disappearing. Or like dying.

There are other unpleasantries, of course. Things that make these events a perfect irony for a self-proclaimed perfectionist and control freak. I’m told I make weird and scary noises, that I sometimes lose bladder control. These are the things that turn into whispered ego-driven panic if I let myself think about them for too long.

But mostly it’s the fear—the constant awareness of my own lack of control and the frailty of my humanness.

In the past, my seizures have been the launch pad for profound spiritual growth—a deepening awareness of God’s constant presence, an infinitesimal release of my attachment to the worldly definition of safety, and a taking root of the kind of deep faith that can only spring from tragedy.

But I’m not there, yet. On the contrary, in the aftermath of this seizure, I find myself floundering—less able to pick myself up, dust myself off, and return to life as usual. The most significant difference between this experience and the previous ones is that Caitlyn, my oldest daughter, was alone with me when it happened.

She sat at the end of my bed, saying my name over and over again, while I convulsed, unresponsive.

As we process this experience as a family, we each grab our separate life rafts in an attempt to keep our heads above water. Scott holds tightly to best-case-scenarios, downplaying the most frightening what-ifs. Charlotte is angry at me—she screams at me to stop talking about it whenever I suggest that she might be having some feelings that she needs to process. And Caitlyn—truly her father’s daughter, finds comfort in practicality, in answered questions, in knowing what to do when. She shakes off my concern for her feelings about what happened with the kind of flippancy only an 11-year-old is truly capable of, yet her arms squeeze tighter when she hugs me goodnight, and her fingers find mine at random intervals during the day.

The life raft I’m looking for, however, doesn’t exist. What I want is a medical diagnosis that tells me this is all a big mistake—that if we can just find the cause of my seizures, we can make them go away for good. And yet my test results repeatedly suggest “idiopathic generalized epilepsy,” meaning a genetic predisposition to seizures. While this diagnosis presents a series of possible life rafts (a new neurologist, medication, even a handy seizure alert system that will automatically notify Scott if I have a seizure when he’s not home), it also presents a certain terrifying truth: that this isn’t “going away,” and furthermore, it’s very possible that one or both of my children (likely Charlotte, who had a febrile seizure as a baby) have inherited this same pesky epileptic gene.

This is the kind of adulting I didn’t sign up for—the kind where you just have to put on your big girl pants and pretend like you’re not afraid all the time.

Because I am. I’m fucking terrified.

Last week, I told my mom that God and I are currently not on speaking terms. The timing of all of this is a joke—I have a book coming out that needs my attention, and a brother in very precarious recovery. I do not have time for EEGs, MRIs, or AFGOs (another fucking growth opportunity).

Luckily, my mom knows me well enough to not be too concerned by this tirade. Instead, she sent me a passage from one of her favorite pieces of writing, a Madeleine L’Engle passage that helped her through one of the most painful times in her own life:

“I sometimes get angry at God,” L’Engle writes, “and I do not feel guilty about it, because anger is an affirmation of faith. You cannot get angry at someone who is not there. So the raging is for me a necessary step toward accepting that God’s way of loving is more real than man’s, that this irrational, seemingly unsuccessful love is what it’s all about, is what created the galaxies, is what keeps the stars in their courses, is what gives all life value and meaning.”

A new friend gave me a gift the other day—a journal, a coffee mug, a candle—a precious offering of being seen. And it reminded me of who I am and what matters to me—and that I don’t have to be unafraid to powerfully claim my existence in this world. The cup of coffee, the lit candle, the whispered prayer—these are the small and vital pieces that slowly but surely bring me back to myself.

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