Couple Embodies Vows of ‘in Sickness and in Health’

It began with daylong hikes in the hills, evenings watching rented videos, nights kissing on her balcony as the moon hung in the thick, humid sky. After two months, they were using the word “love.”

“He’s the one,” Wendy Stacy told her sister. It was fall 1998. Stephen Heywood, a 29-year-old carpenter, had just moved back to his hometown and was looking for a row house to renovate. Wendy, 33, was working and taking classes.

But there was that problem with Stephen’s right hand that wouldn’t go away. When he put the key into the door, he couldn’t turn it; when his fingernails got long, he hadn’t the strength to clip them.

Then: a doctor’s appointment. Tests. More tests. In December came the news: Stephen had ALS--Lou Gehrig’s disease. A condition that methodically cripples the nervous system, paralyzes its victims, then kills them.

Stephen had two, maybe five years left. And this is where the couple’s story really begins.

There were no anguished goodbyes for Stephen Heywood and Wendy Stacy. Instead they stayed together. They shared a first Christmas. In February they married. Come September, they are expecting a child.

An ALS diagnosis not only sets a cruel deadline, but guarantees remaining days filled with pain. How could they commit to such an uncertain future, much less rear a child in it?

For them, it was hardly a choice. Instead it was an unavoidable detour to a place where vacations matter more than careers, half-birthdays are celebrated and minor holidays are marked with diamonds. Where the only thing that feels normal is to be together.

Today Stephen and Wendy are marking newlywed rituals: first apartment, first car, getting to know in-laws. But each activity carries special heft, for each is accompanied by the strange edge of the ticking clock.

How long will Steve be able to drive? How long will he be able to climb the four flights to their apartment? Will he be around for a second child?

It is in this particular soil that their romance has taken root.

*

“There’s no reason 30-year-olds should be talking about wills and disabilities and remarriages,” Stephen Heywood says, nervously adjusting his baseball cap. It’s a gorgeous spring day, and he is reflecting on how the diagnosis of amyotrophic lateral sclerosis has affected his relationship and his life.

He’d have been outside on a day like this, wrapping up a house renovation. Now that sort of high-coordination work is impossible; his fingers curl rigidly, and his misbehaving legs force his lanky, 6-foot-3 frame to wobble and struggle with curbs. Sometimes he just topples.

Sure, Stephen could oversee projects. But with the limited time he has left, he says, working long hours seems dumb. He wants to spend time with family and friends and strive for a normal relationship. “Normal” is a word Stephen uses a lot, but the concept seems cruelly elusive.

“It’s frustrating,” he says, “because we had a pretty normal courtship and falling in love.” As he speaks, an e-mail from Wendy pops up: “Hug kiss,” she writes.

When the preliminary diagnosis came in December 1998, they had not only sexual sparks to spare but also that intangible connection--that “click” that made being together effortless.

A Fateful Diagnosis

Back then, their conversations were about how to mix the perfect gin and tonic or how much better vampire movies were than ponderous art-house films. Stephen would mention doctors’ appointments and raise the possibility that something was wrong, and Wendy would dismiss it.

“I’d say, ‘Pshaw, look at you, you’re a healthy man. Look how big you are,’ ” she says.

But the diagnosis did come, just before Christmas. Stephen had gone in for some brief tests. Instead, for five hours, a neurologist inserted needles into his arms, his legs, even his tongue, trying to read the muscles’ electrical activity.

By the end of the day, everything seemed to point to ALS.

“He came back from the doctor’s and he said, ‘If I’m dying, will you have my baby?’ And I said, ‘Sure, sure, but you’re not dying,’ ” she says. “It was just so obvious without even being said that wherever we were going, we were going together.”

Wendy didn’t go home to Missouri for Christmas that year. During the next month, between her job as a Harvard professors’ assistant and working toward her master’s in biology, she began quietly researching ALS on the Internet.

“I’d say, ‘He has it. He has ALS.’ And then I’d say, ‘No, I’m just being dramatic,’ and then I’d feel better,” she says. “I’d just look at him and think, he walks fine, he gets around great. So he doesn’t use his right hand that well--he’ll be all right; we’ll fix him.”

Wendy waited by the phone the January day Stephen went for a formal diagnosis. By nightfall, he hadn’t called. She knew.

“I cried and cried and cried,” she says.

Things began to change fast around Wendy and Stephen. Stephen’s older brother moved home from California and launched an ALS therapy development organization in the basement. Friends and relatives joined in. His home became ALS central, filled day and night with charts and ringing phones.

Stephen began to retreat, sleeping at Wendy’s, looking for some space without ALS.

“She was saying almost immediately, ‘I want to get married,’ and I was thinking, ‘Are you nuts? Are you being rational?’ ” says Kate Collignon, Wendy’s roommate at the time. “But she seemed to know exactly what she needed, and things didn’t change.”

Wendy and Stephen say their decision to marry and have a child made sense. They shared the same values and goals, after all, and they knew they probably didn’t have much time.

“It’s not about whether this move gets me far ahead in life,” she says. “This is where I want to be right now.”

Stephen’s mother, Peggy Heywood, a retired social worker, didn’t counsel Stephen about his decision to have a family. “My intent has been that Stephen has the life that he has as long as he has it,” she says.

Minutes later, she concedes that his choices were not obvious ones. “I don’t know if it’s reasonable--no, it’s not!” she says. “But it’s life-affirming.”

*

What roads brought Wendy and Stephen to this place, to these decisions?

Stephen grew up in Newton, a Boston suburb of stately homes, liberal politics and a sense of possibility. People who live here have PhDs, gardeners and children who know about organic food and East Timor.

The Heywood household represented the best of that. John and Peggy not only emphasized the importance of a good education, but also offered their three sons creative ways to play.

John, a mechanical engineer at MIT, taught them drawing and carpentry. The boys played computer games after school, spent their summers at Peggy’s family’s dairy farm in South Dakota and grew so close that people at their Episcopal church called them “the Three Musketeers.”

Stephen grew into a tall, handsome man with a muss of brown hair, green eyes and a sheepish smile. He wears baseball caps, drinks chocolate martinis and loves big-budget movies.

His constant enthusiasm and optimism can, at first, annoy. But as his high school friend Greg Trimble puts it, there’s a reason: “He comes from a family where things tend to go well.”

The world didn’t seem so limitless in Wendy’s childhood. The youngest of seven, she was reared in Branson, Mo. She grew up in the embrace of the Pentecostal church and protective parents who forbade sleepovers and feared flying.

Wendy quickly grew restless in her hometown, annoyed by a fear of the unknown that she describes as very Midwestern. She left at age 18 for Southwest Missouri State University, the first in her family to go to college. After earning her English degree, she was the first and only of her siblings to leave Missouri. She established a pattern: moving every few years to new cities, new adventures.

In 1995 she and a boyfriend decided to try Northern California. They stayed for the first few months with one of his childhood pals--Stephen, who was living in Palo Alto and renovating a house.

They hit it off. Stephen was impressed by how quickly she found work and adjusted to California. Wendy remembers a hunky artist who made her laugh.

“Here he was, doing that whole hammer-and-nail thing, and he was an artist,” she said. “He was kind of like the ultimate man--strong and yet sensitive.”

Within a few months, Wendy and her boyfriend abandoned their West Coast trip and headed back east. Wendy and Stephen stayed in touch, speaking a couple times a year as her relationship ended. They flirted during their few phone calls and when Stephen would visit his family in Newton, but neither gave it much thought until he moved home in 1998.

To Wendy, Stephen and the Heywoods represented something she felt had eluded her: thinking big.

“It’s not that my family doesn’t think I can do better,” she says. “They just don’t seem to even know that there is better.”

More than a foot shorter than Stephen, Wendy has long, blond hair, a wide smile and a wardrobe of overalls and flowery dresses. She writes love poems and makes gift baskets.

“There are a ton of things that don’t fit,” Stephen jokes. “I mean, she’s only 5 feet tall. What am I doing?”

Stephen rejects cosmic explanations for the unfairness of his malady. He pokes fun at people who take themselves too seriously, such as those who don’t have TVs or write their own marriage vows.

He also pooh-poohs folks who believe in fate--like Wendy.

She believes she was destined to marry him; she’s sure that what seemed like a misguided decision to move across the country was part of a larger plan carrying her to her future husband.

But Wendy can turn hard when her judgment is questioned. A few friends asked if the whole romance was a good idea and wondered whether ALS could be passed to a child. While experts say it’s nearly impossible for Stephen’s type of ALS to be hereditary, the notion that anyone might question her judgment makes Wendy furious.

“People who know me know not to question me,” she says, “even if I’m wrong.”

While Wendy felt she had her family’s support in marrying Stephen, she was adamant that her parents not be interviewed. At first she said they’d have nothing to say; then she said she feared upsetting them. One of her sisters is unequivocal in voicing her support, though.

“Everyone has a death sentence,” says Annie Keller, 39. “You just don’t know when that’s going to be, and if you find that person you love, why would you call it quits?”

*

No matter how hard Stephen and Wendy try to be a normal couple, ALS continues to wash itself like a perpetual tide over every corner of their relationship.

It has forced them to map out everything, from how many children they likely have time for to when the wedding would be. “We want to make sure that he can walk down the aisle,” Wendy said before the nuptials.

Stephen has stopped building and works with family and friends at the ALS Therapy Development Foundation, founded by his brother, Jamie, to experiment with treatments for a disease that is barely understood.

Wendy is rethinking her plan to get a master’s degree and is considering returning to publishing, where she can make money--no small matter, given the years ahead that she may well spend alone.

Six months after Stephen and Wendy moved into Boston’s elegant Back Bay neighborhood, in an apartment overlooking the Charles River, Stephen’s legs had deteriorated so far that he couldn’t climb stairs. They are looking for a more accessible home near his parents in Newton.

Without ALS, they’d have the privacy newlyweds are usually allowed. Now, she says, “everyone wants to spend time with Stephen.” Without ALS, they’d be having more fun. Less chaos. More money. Less stress.

Trying for Normalcy

And yet the sickness has forced Wendy and Stephen to take time together they probably wouldn’t otherwise. They have gone on long vacations and frequent weekend trips, even though Stephen is losing stamina by the week.

Stephen and Wendy’s wedding was another attempt at normalcy. Pachelbel’s Canon played. People cried when the bride appeared, clapped when they kissed, ate cake together.

But there was an extraordinary air about the church that February night. Friends bit lips to keep from crying. Relatives coughed to mask sobs as Stephen, beaming, wobbled down the aisle.

And the Rev. James McAlpine lent words to what everyone realized: This young couple knows that real love “goes beyond romantic love--a love that accepts suffering and loss as well as joy and new life.”

AP writer Michelle Boorstein and Stephen Heywood have been friends since they attended Newton North High School in Massachusetts in the 1980s.

On the Net: The ALS Therapy Development Foundation: www.als-tdf.org