The Washington PostDemocracy Dies in Darkness

This couple’s extraordinary response to an ALS diagnosis

Placeholder while article actions load

He promised her he wouldn’t be late, so at noon on a Friday a gaunt man named Eric Powell steered a red Jeep Wrangler into a Rockville parking lot overlooking a park and killed the engine. “I can still turn the ignition with one hand,” the 36-year-old high school teacher said, looking at his shaking fingers. “But it’s harder and harder to do every day.”

Inside the Jeep lay an assemblage of seemingly contradictory objects. There was his walking cane. There was a bottle of a high-calorie shake “to keep my weight up,” he said. Then there were the athletic accoutrements. Eric wore athletic socks, Crocs, and a pair of ventilated shorts emblazoned with the words “Adventure, Outdoor “— all relics of a fast-dissolving life.

He lowered his head to peer at a glowing iPad, murmuring the words it said. “Yes, I am in this for the long haul,” Eric read. “…You are my strength, my light, my friend, and my love. And I will always be yours.”

Then he caught sight of her, Laura Stotz, his wife-to-be. She was playing with children at the base of the hill in the park. A pretty, athletic woman, she wore two dresses, muck boots and a multi-colored shawl that glowed like fire in the noon sun.

“In my mind,” Powell said looking at her. “She has been my wife already for five years. And today, today is just to tell the world.”

[Related: View video of the wedding]

Powell opened the door and lowered a quivering foot down to the ground. Knees buckling, muscles twitching, he began the long descent down a hill to meet Laura, a middle school teacher, who led more than 100 Christ Episcopal School students in a slew of activities to celebrate Field Day. This occasion, however, wasn’t just about Field Day.

It was a wedding. His wedding. A day he never thought would happen. But then again, Eric never thought a lot of things in his life would happen.

When people meet Eric, and learn of his degenerative condition, the natural assumption would be that he has struggled with Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease, for some time. Years, perhaps. Many months, surely. But to assume that would be to underestimate the profound cruelty of the condition. It attacks each person’s nervous system in a unique way. Around 10 percent of its victims will live with it for longer than a decade. Five percent make it past two decades. Stephen Hawking has lived a half-century with it.

Not everyone is so lucky. Eric, diagnosed two months ago, is one of the unlucky ones. The condition, which cripples nerve cells in the brain and spinal cord and eats muscle right off the bone, has progressed with such quickness that he marks his deterioration by the week. Two weeks ago, Eric could lumber around his yard. One week ago, he could do so only with the help of his cane. Today, he can barely stand up from his chair by himself.

He gives himself maybe two years. Laura says one.

So freeze the moment, Laura thought after Eric’s diagnosis, because there are so few left. Let’s get married, she told him as they pulled up to an empty intersection shortly after the doctor gave them the news. This came as a surprise to Eric. They’d been together for seven years, lived together for more than five, but in all that time they had only entertained one conversation about marriage. Don’t ask me to marry you, she told him that day years ago, because I’m not ready. So he never did.

Life-altering news, however, has an odd way of changing things. “We want to tell the world how we feel,” said Laura, who considers herself a “very private person.” Before the diagnosis, she would rarely talk about Eric at school, keeping personal affairs firmly outside of school. Now she can’t stop talking about him. She wants anyone and everyone to know. “We want to boast about each other,” she said.

But they still want to be themselves about it. And that means festooning the crescendo of their relationship with the elements that define it. Eric and Laura, who’s quitting her job to spend time with him, don’t consider themselves traditional people. This is a point they repeat often. She dyes her hair all sorts of colors, from blue to green. He crafts oddly-shaped wood items — like a wooden rocking horse — that are equal parts beautiful and strange. So they decided if this was to be a wedding, it was going to be their kind of wedding.

Colorful outfits and children would be present, themes drawn from their story’s beginning. They met in 2006 in Staunton, Virginia. Eric had just taken a job there as a science teacher, pulling up to the school in his Jeep Wrangler. Laura, an avid soccer player who also commanded a Jeep Wrangler, remembered the first faculty meeting when they met. There was a certain mischievousness that belied his calm demeanor.

“Just seeing him,” she said. “Hearing what he had to say about the kids, and teaching, and that he’s going to be doing soccer, and he had a Jeep at the time, I was like, ‘This guy is going to be a problem.’ It took us a few years to get our act together.”

Two years, to be exact. Then one day, Laura steered that Jeep to one of Eric’s soccer practices to watch him coach. “First time I paid attention to her was when she came out to practice that first time,” he said. “Pretty girl, getting out of a red jeep, coming out to play soccer. I mean, I’m a shallow person.”

They recall this moment as one that separated life into two discernible categories: Before and After. It led to another such moment on a snow day soon after, when they spent the day hiking and realized the significance of their blooming relationship. Then another when they moved into their first place together. Then another when they quit their teaching jobs in Staunton and moved into a spacious house nestled atop a hill in Silver Spring.

Then there’s the one neither of them can forget. It was on a day last November. They were playing a game of indoor soccer in Germantown. “I was stumbling and tripping, and I normally don’t,” he said. “I am the kind of player that doesn’t fall over unless I get hit. … I thought, ‘Maybe I’m getting older.”

But the pair came to a distinctly different conclusion over the ensuing weeks as he continued to trip and fall. “It wasn’t until sometime in February when I was trying to run across the street and my knees just buckled,” he said. “And my left hand started getting weaker. We started rock climbing at a gym and things I can normally do, I couldn’t anymore. … It progressively got worse.”

Afterward was a blur of doctors appointments and tests, the winnowing of possibilities, culminating in a final consultation with a doctor in late March. Laura normally didn’t go with him to his appointments, but something felt different about this one. When Eric got the news, he couldn’t speak a word for a half hour. He just stared.

“You have these things in the back of your mind of what it could be and what it might be and what you hope it won’t be,” Laura said. “And when you go to that last neurologist meeting and he says, ‘You have ALS.’ That’s it. You say, ‘I now have ALS. And it’s going to kill me. And it’s going to kill me fast.'”

What happened next was difficult to understand, they said. It was the speed. Even after you read up on the literature, learn of the condition’s myriad variants, the speed can only be understood by bearing witness to it. It was only last November that Powell was his buoyant self, bouncing off to class, looking for his next soccer game. And now, Laura asks, just two months later, he can barely walk? It’s crazy. It’s madness. It’s impossible.

Let’s get married, she told him. Freeze the moment.

Soon after Eric arrived at the park where he would be married on Friday, he descended another hill and hobbled toward a creek. It was rimmed with orange cones, from which balloons billowed: wedding meets school function.

The children then formed a long aisle. And as they hummed the bridal chorus, Laura Stotz, wearing her muck boots and two dresses, slowly walked toward him. They embraced, and looked upon one another.

“I will fall down with you,” Eric said to her. “I will stand up with you. I will grow with you.”

After the kiss, after the shouting, after the air filled with bubbles, the newly married couple caught each other’s eyes for a moment.

“You good?” Laura asked him.

“Yeah,” he mouthed. “I’m good.”

Related stories on Inspired Life:

When strangers assume your girlfriend is your nurse

How barbers are saving people from colon cancer

Sign up for the Inspired Life Saturday Newsletter here