Brave

This post could have been dubbed “MIA,” but that’s already been done. I have indeed been MIA from blogging, but not from writing. Below is a personal essay I submitted to the final round of the Yeah Write Super Challenge, which, to my astonishment, earned first place. And I say astonishment after reading a few of the other contenders. Well done, all.

 

“Peas patha napins,” my husband said, the back of his hand covering his mouth.

“What?” I asked.

He swallowed hard. A lump of bacon cheeseburger trailed down his throat like a snake swallowing a mouse. “The napkins,” he said. “Could you please pass them?”

We sat in a booth at a restaurant renowned for onion rings the size of platters and outrageous cheeseburgers—peanut butter, jelly, and bacon, for one. Twenty-four hours ago I also would have ordered something that required extra napkins, but not tonight. Tonight I ate a salad of sliced pears and an extra order of grilled chicken, hold the dressing, because tonight, as we’d waited for a table, I’d made a decision. Perhaps it was the lingering headiness of a successful 5K three months previous, or perhaps it was low blood sugar, but I’d decided to run a marathon.

1968

Marathons were more commonplace than ever thanks to running’s surge in popularity. But I wasn’t a runner. That 5K was the farthest I’d run in my entire life. Still, how far could a marathon be? Probably not more than a few 5Ks strung together. More or less.

We got home from the restaurant that night, me hungry but virtuous, and after Googling “marathons,” I clicked on the first site that popped up. Then I clicked on the second site. Twenty-six-plus miles? Were they serious? Is that what I’d committed to, running a length greater than the distance I typically drive in a week? And I had committed to it. Maybe not to anyone else, but to myself.

I researched training plans the way a pregnant woman researches pediatricians, and learned that it conservatively takes five months to train properly. Now I needed to find a race. What about the Long Beach Marathon next October, nine months from now? That was the race the 5K had been affiliated with, so why not run something a year to the day of my first 5K? Plus, the marathon was hosted by the nonprofit our daughter did volunteer work for. It was serendipity. In four months, I’d start training.

Those four months sailed by and soon I was headlong into prescribed running: X miles on X day at X pace. I came to crave the predictability of my runs, the comfort of having at least one stable aspect of my day. Because for the past ten years, my days had been anything but stable.

Our oldest daughter, the one who volunteered for the nonprofit organization hosting the Long Beach Marathon, contracted viral encephalitis when she was 14 years old. She survived despite dismal odds, but after a life of perfect health she is now nonverbal and wheelchair bound. She cannot dress herself, feed herself, or roll over in bed. She cannot scratch an itch. But she is able to think, and she is able to tap on her Mac’s keyboard with a single weak finger, and she has tapped out speeches read on her behalf to benefit that nonprofit, one that provides low-cost wheelchairs at no cost to the disabled in developing countries. Serendipity.

The miles piled up impressively, eleven one week, thirteen the next, and soon I was logging upward of twenty-five miles per week. Training for a marathon isn’t a sprint but, well, a marathon, and the gradual five-month progression allows important physiologic adaptations to occur safely. And since I followed my program explicitly, I ignored the toothache-like soreness in my right thigh until it progressed from vague discomfort to pronounced pain.

“Why don’t you see a doctor?” my husband asked. I wanted to say, “Because I don’t want to know what’s wrong.” But what I said was, “Okay.”

A week later, after a detour through Radiology, I sat in an orthopedic surgeon’s office.

“I don’t see anything wrong,” he said, squinting at my x-ray. “No reason to stop running. Come back if the pain doesn’t go away.”

The pain didn’t go away, so I went back. This time he ordered an MRI. This time I was scared.

Meanwhile our friends had invited us to go camping with them at the beach. Running along a sandy path instead of asphalt, salt air replacing exhaust fumes? I couldn’t wait. My running shoes sat at the bottom of the suitcase because they were the first things I’d packed. The day before we were scheduled to leave, the doctor called with the results of the MRI.

“It’s a femoral stress fracture,” he said.

I imagine there was a bemused expression on my face because I was certain he was kidding. Or looking at the wrong MRI. Or something. But judging from his silence, he was neither kidding nor mistaken. “Oh,” I finally replied. “Wow. What caused that?” But I knew.

“Running,” he said. “So no running for eight weeks.”

Eight weeks? We were leaving for the beach tomorrow. I hung up, walked into the bedroom, and stared at the splayed suitcase on the bed. A hint of purple peaked from beneath T-shirts and shorts. My running shoes. Should I pretend the doctor’s phone call came after our trip? No one would know differently. I’d already run with pain for two months—how much worse could it be in three days?

And then I thought of our daughter. I thought of sometimes not getting what we want, and of living through it gracefully and authentically, if not always contentedly, and of how she had shown nothing but support as she bravely watched me run when she herself could no longer walk. And I returned my running shoes to the closet.

I completed the Long Beach Marathon injury free 30 days after my eight-week hiatus, and from the finish line ran straight into the arms of my biggest supporter. And that peanut butter, jelly, and bacon cheeseburger, the one served at the restaurant where I made the decision to run a marathon? That’s my biggest supporter’s favorite. Maybe next time we’re at that restaurant I’ll share one with her.

Seventeen Years Ago, Plus or Minus a Day

door-349807_1280February 17, 1998. A Tuesday night. Or did it happen just after midnight, making it February 18? I don’t know. The medical records document every IV started, every vial of blood collected, every consent signed.

But they don’t document when I lost my daughter.

The process began Tuesday night. I know this because at 10 o’clock my daughter’s eyes fluttered open—an encouraging sign from her ICU bed as she awaited transfer to a trauma center for the euphemistic explanation of “a higher level of care.” But when my husband whispered, “Erin, you okay?” into her ear, she shook her head, and closed her eyes.

Is that when I lost her?

What went wrong? I asked the doctor on February 17. Nothing went wrong, he said. She’s too unstable. I didn’t do the lumbar puncture. One of her pupils has blown.

My daughter was careening towards brain death but nothing went wrong? Semantics, I suppose. Because when a 14-year-old girl walks into a hospital with a hacking cough and a nagging headache then leaves ventilated on a gurney in the back of an ambulance on the way to a trauma center, something most decidedly went wrong.

Maybe I lost her sometime during her medically-induced three-month-long coma. Eventually she opened her eyes, but in my mind that doesn’t count. By June she tracked objects, and by September she smiled. But those don’t count either.

Nothing counts, because nothing brings us back to February 16, 1998.

Hollywood, I’ve decided, is to blame, because I believed with all my heart—thanks to their wrapping-problems-up-in-an-hour world—that this could be fixed. That even when the situation crawled from days to months, one glorious morning Erin would sit up, rub her eyes, and ask what happened. We would be thrilled, but not surprised.

Along the way, though, something went wrong, and Erin didn’t follow the script.

In word math, “hospital” plus “loss” equals “death.” In Erin’s case there was not a physical death but a death of plans: plans of signed yearbooks and karaoke, of babysitting money and boyfriends. And that’s where her plans stop—or, rather, that’s where I stop them. Which means her plans never included driver’s ed or prom, children or a mortgage. They simply could not.

Here’s another word math equation: “trauma center” plus “medical experts” equals “cured.” In reality that equation needs one of those little equal-sign-with-the-line-through-it symbols, because there aren’t always cures. Or answers, or prognoses.

Most days I face forward, and see the people Erin helps: the students being taught by a teacher she inspired not to quit after his daughter was murdered by a former pupil—that teacher later nominated for Disney Teacher of the Year. Or the disabled people in Third World countries finally seated in wheelchairs of their own, no longer dragging themselves across dirt roads or relying on family members to carry them piggyback, thanks to Erin’s fundraising efforts for Free Wheelchair Mission.

Other days—days decreasing with the passage of time—I think back to that night seventeen years ago today when the doctor said that nothing went wrong. And I think how mistaken he was.

Because something indeed went very, very wrong.

Chrysalis

Courtesy CC/Flickr

Courtesy CC/Flickr

There was a girl I knew once. She was fourteen years old last time we saw each other. Her quick smile revealed lavender and pink rubber bands on her braces, I remember, and you got the impression she was like every other bubbly blonde on every other high school campus.

But this bubbly blonde was different.

This bubbly blonde had a 4.5 International Baccalaureate GPA and dreams of joining the space program, a fact illustrated by the dog-eared NASA application packet on her bedroom desk.

I knew her well. I knew the raised scar on her wrist was from a curling iron burn, and that she used too much hairspray on her bangs. I knew she was a rotten basketball player, and that she loved Mississippi mud cake. I knew her well, though perhaps not as well as I thought.

The last time I saw her was seventeen years ago, in a hospital. She was a patient there, I her visitor. You needed that scarred wrist to identify her; a ventilator hid the lavender and pink rubber bands, and her bangs fell flat. State-of-the-art medical equipment crammed her private ICU room, and she appeared small and inconsequential in comparison. Doctors shook their heads—either in disbelief or nonbelief, I’m not sure which—when they heard about her intellect, her plans.

Months later she emerged from a medically-induced coma, and people waited—waited for her to talk, or at least acknowledge a visitor’s presence. She did neither.

Over time she learned to use hand controls on her power wheelchair and an iPad for communication, because the devastating illness that stole almost a year of her life also stole her ability to walk and talk.

What, her friends and family wondered, will become of her?

Over still more time she returned to high school and graduated with her original class, near the top of her class. Later she was honored as Free Wheelchair Mission’s Ambassador of the Year after delivering sermons on their behalf, lifting hundreds of individuals off the ground “through the gift of mobility,” as Free Wheelchair’s tagline says.

How, you may wonder, does a nonverbal person deliver a sermon, anyway? The simple answer is, by typing with one finger and having the message read aloud. The complex answer is, with a lot of grit and grace.

Because drooling is a problem for someone with little motor control. So is being front and center when, I imagine, you’d rather sit in the back of the room. I said I didn’t know her as well as I thought, because the girl I knew would never have opened herself to public scrutiny, to curious looks, to outright stares.

The bubbly blonde is gone. Maybe she didn’t disappear in that hospital; I don’t know—maybe she just grew up. It happens. Her evaporated NASA dreams, I’m sure, disappoint her. But her earthly contributions now, today, impact more lives than if she’d traveled in space.

So why does a fourteen-year-old girl—a girl I haven’t seen in seventeen years—continue to haunt me? Because that girl was my daughter.

But so is the young woman that girl has become.