NEWTON, Mass. - It began with daylong hikes in the hills,evenings watching rented videos, nights kissing on her balcony asthe moon hung in the thick, humid sky. After two months, they wereusing the word "love." "He's the one," Wendy Stacy told her sister.It was fall 1998: Stephen Heywood, a 29-year-old carpenter, had justmoved back to his hometown and was looking for a row house torenovate; Wendy, 33, was working and taking classes.
But there was that problem with Stephen's right hand thatwouldn't go away. When he put the key into the door, he couldn'tturn it; when his fingernails got long, he hadn't the strength toclip them.
Then: a doctor's appointment. Tests. More tests. In December camethe news: Stephen had ALS. Lou Gehrig's Disease. A condition thatmethodically cripples the nervous system, paralyzes its victims,then kills them.
Stephen had two, maybe five years left. And this is where theirstory really begins.
There were no anguished goodbyes for Stephen Heywood and WendyStacy. Instead, they stayed together. They shared a first Christmas.In February, they married. Come September, they are expecting achild.
An ALS diagnosis not only sets a cruel deadline, but guaranteesremaining days filled with pain. How could they commit to such anuncertain future, much less raise a child in it?
For them, it was hardly a choice. Instead, it was an unavoidabledetour to a place where vacations matter more than careers, half-birthdays are celebrated and minor holidays are marked withdiamonds. Where the only thing that feels normal is to be together.
Today, Stephen and Wendy are marking newlywed rituals: firstapartment, first car, getting to know in-laws. But each activitycarries special heft, for each is accompanied by the strange edge ofthe ticking clock.
How long will Steve be able to drive? How long will he be able toclimb the four flights to their apartment? Will he be around for asecond child?
It is in this particular soil that their romance has taken root.
Striving to be 'normal'
"There's no reason 30-year-olds should be talking about wills anddisabilities and remarriages," Stephen Heywood says, nervouslyadjusting his baseball cap. It's a gorgeous spring day, and he isreflecting on how the diagnosis of amyotrophic lateral sclerosis hasaffected his relationship and his life.
He'd have been outside on a day like this, wrapping up a houserenovation. Now that sort of high-coordination work is impossible;his fingers rigidly curling and his misbehaving legs forcing hislanky, 6-foot-3 frame to wobble and struggle with curbs. Sometimeshe just topples.
Sure, Stephen could oversee projects. But with the limited timehe has left, he says, working long hours seems dumb. He wants tospend time with family and friends and strive for a normalrelationship. "Normal" is a word Stephen uses a lot, but the conceptseems cruelly elusive.
"It's frustrating," he says, "because we had a pretty normalcourtship and falling in love." As he speaks, an e-mail from Wendypops up: "Hug kiss," she writes.
When the preliminary diagnosis came in December 1998, they hadnot only sexual sparks to spare but also that intangible connection -that "click" that made being together effortless.
Back then, their conversations were about how to mix the perfectgin and tonic or how much better vampire movies were than ponderousart-house films. Stephen would mention doctors' appointments andraise the possibility that something was wrong, and Wendy woulddismiss it.
"I'd say, 'Pshaw, look at you, you're a healthy man. Look how bigyou are,"' she says.
But the diagnosis did come, just before Christmas. Stephen hadgone in for some brief tests. Instead, for five hours, a neurologistinserted needles into his arms, his legs, even his tongue, trying toread 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, willyou have my baby?' And I said, 'Sure, sure, but you're not dying,"'she says. "It was just so obvious without even being said thatwherever we were going, we were going together."
Wendy didn't go home to Missouri for Christmas that year. Duringthe next month, between her job as a Harvard professors' assistantand working toward her master's in biology, she began quietlyresearching ALS on the Internet.
"I'd say, 'He has it. He has ALS.' And then I'd say, 'No, I'mjust being dramatic,' and then I'd feel better," she says. "I'd justlook at him and think, he walks fine, he gets around great. So hedoesn't use his right hand that well - he'll be all right; we'll fixhim."
Wendy waited by the phone the January day Stephen went for aformal 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'solder brother moved home from California and launched an ALS therapydevelopment organization in the basement. Friends and relativesjoined in. His home became ALS central, filled day and night withcharts and ringing phones.
Stephen began to retreat, sleeping at Wendy's, looking for somespace without ALS.
"She was saying almost immediately, 'I want to get married,' andI was thinking, 'Are you nuts? Are you being rational?"' says KateCollignon, Wendy's roommate at the time. "But she seemed to knowexactly what she needed, and things didn't change."
Wendy and Stephen say their decision to marry and have a childmade sense. They shared the same values and goals, after all, andthey knew they probably didn't have much time.
"It's not about whether this move gets me far ahead in life," shesays. "This is where I want to be right now."
Stephen's mother, Peggy Heywood, a retired social worker, didn'tcounsel Stephen about his decision to have a family. "My intent hasbeen 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 obviousones. "I don't know if it's reasonable - no, it's not!" she says."But it's life-affirming."
From different worlds
What roads brought Wendy and Stephen to this place, to thesedecisions?
Stephen grew up in Newton, a Boston suburb of stately homes,liberal politics and a sense of possibility. People who live herehave PhDs, gardeners and children who know about organic food andEast Timor.
The Heywood household represented the best of that. John andPeggy emphasized not only the importance of a good education, butalso offered their three sons creative ways to play.
John, a mechanical engineer at MIT, taught them drawing andcarpentry. The boys played computer games after school, spent theirsummers at Peggy's family's dairy farm in South Dakota and grew soclose that people at their Episcopal church called them "The ThreeMusketeers."
Stephen grew into a tall, handsome man with a muss of brown hair,green eyes and sheepish smile. He wears baseball caps, drinkschocolate martinis and loves big-budget movies.
His constant enthusiasm and optimism can, at first, annoy. But ashis high-school friend, Greg Trimble, puts it, there's a reason: "Hecomes from a family where things tend to go well."
The world didn't seem so limitless in Wendy's childhood. Theyoungest of seven, she was raised in Branson, Mo. She grew up in theembrace of the Pentecostal church and protective parents who forbadesleepovers and feared flying.
Wendy quickly grew restless in her hometown, annoyed by a fear ofthe unknown that she describes as very Midwestern. She left at age18 for Southwest Missouri State University, the first in her familyto go to college. After earning her English degree, she was thefirst and only of her siblings to leave Missouri. She established apattern: 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 at how quickly she foundwork and adjusted to California. Wendy remembers a hunky artist whomade her laugh.
"Here he was, doing that whole hammer-and-nail thing, and he wasan 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 WestCoast trip and headed back East. Wendy and Stephen stayed in touch,speaking a couple of times a year as her relationship ended. Theyflirted during their few phone calls and when Stephen would visithis family in Newton, but neither gave it much thought until hemoved home in 1998.
To Wendy, Stephen and the Heywoods represented something she felthad eluded her: thinking big.
"It's not that my family doesn't think I can do better," shesays. "They just don't seem to even know that there IS better."
More than a foot shorter than Stephen, Wendy has long, blondhair, a wide smile and wardrobe of overalls and flowery dresses. Shewrites love poems and makes gift baskets.
"There are a ton of things that don't fit," Stephen jokes. "Imean, she's only 5 feet tall. What am I doing?"
Stephen rejects cosmic explanations for the unfairness of hismalady. 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 whatseemed like a misguided decision to move across the country was partof a larger plan carrying her to her future husband.
But Wendy can turn hard when her judgment is questioned. A fewfriends asked if the whole romance was a good idea and wonderedwhether ALS could be passed to a child. While experts say it'snearly impossible for Stephen's type of ALS to be hereditary, thenotion that anyone might question her judgment makes Wendy furious.
"People who know me know not to question me," she says, "even ifI'm wrong."
While Wendy felt she had her family's support in marryingStephen, she was adamant her parents not be interviewed. At firstshe said they'd have nothing to say; then she said she fearedupsetting them. One of her sisters is unequivocal in voicing hersupport, though.
"Everyone has a death sentence," says Annie Keller, 39. "You justdon't know when that's going to be, and if you find that person youlove, 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 cornerof their relationship.
It has forced them to map out everything from how many childrenthey likely have time for to when the wedding would be. "We want tomake sure that he can walk down the aisle," Wendy said before thenuptials.
Stephen has stopped building and works with family and friends atthe ALS Therapy Development Foundation, founded by his brother,Jamie, to experiment with treatments for a disease that is barelyunderstood.
Wendy is rethinking her plan to get a master's degree and isconsidering returning to publishing, where she can make money - nosmall matter, given the years ahead that she may well spend alone.
Six months after Stephen and Wendy moved into Boston's elegantBack Bay neighborhood, in an apartment overlooking the CharlesRiver, Stephen's legs had deteriorated so far that he couldn't climbstairs.
They are looking for a more accessible home near his parents inNewton.
Without ALS, they'd have the privacy newlyweds are usuallyallowed. Now, she says, "everyone wants to spend time with Stephen."Without ALS, they'd be having more fun. Less chaos. More money. Lessstress.
And yet the sickness has forced Wendy and Stephen to take timetogether they probably wouldn't otherwise. They have gone on longvacations and frequent weekend trips, even though Stephen is losingstamina 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 Februarynight. Friends bit lips to keep from crying. Relatives coughed tomask 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."
On the Net: The ALS Therapy Development Foundation: www.als-tdf.org
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