Monday, January 13, 2003 - 10:36 a.m. Pacific
By Marc Ramirez
Seattle Times staff reporter
It had been a long time since Erin Musser could move around like this. A life of canes, crutches and wheelchairs became a distant blur as the months passed and the child inside her grew. In her journal to her unborn baby, she wrote things like:
You gave me such a great gift. During those nine months, I felt so good.
Being pregnant with you has been like a nine-month vacation.
Pregnancy slows down most women, but for Erin it was liberating: For the first time in more than three years, she took her dog for strolls around her Beacon Hill neighborhood and braved long walks from parking lots to Seattle Mariners games.
She had to remind herself that as real as it seemed, it belonged to a world that was no longer hers.
A life altered
As a corporate recruiter for companies like Prudential and Merrill Lynch, Erin Musser was an auburn-haired whirlwind used to 70-hour work weeks.
Then, four years ago, she was diagnosed with multiple sclerosis (MS), a neurological disorder in which the immune system attacks the central nervous system, with results ranging from numbness or paralysis to loss of vision and balance. It's as if the body's circuitry is broken: "My brain does not say to my left leg, 'The floor is right there,' " Erin says. "The signal doesn't get there, or it goes shooting off somewhere else."
It's a disease whose mysteries include a geographic tendency toward the northern latitudes, including the Pacific Northwest. It strikes mostly young adults; for women, afflicted at twice the rate of men, those are the childbearing years.
For many women with MS, pregnancy presents another curiosity — a miraculous, if temporary, reprieve from the disease's symptoms. But those maladies eventually return, sometimes exacerbated, after the baby is delivered.
For them, pregnancy means weighing motherhood's benefits against the potential cost to their own health and the chance that they someday might be physically unable to care for the child — and might need care themselves.
Erin's condition worsened, finally forcing her to give up her career. Still, she and her husband, Nick, an executive chef at Icon Grill, decided they wanted to be parents.
Weighing the risks
The doctor's face lit up when they told her their plans. Swedish Hospital's Sylvia Lucas, a neurologist with 400 MS patients, told Erin what she told other women: "Just because you have MS doesn't mean you can't live a normal life."
Lucas knew the puzzles and statistics surrounding the disease inordinately fed worries. She recalled one woman weeping at the thought of motherhood, afraid she might pass MS on to her baby; such risk is only minimally higher than among the general population. Another considered moving to California to have her child, hoping to evade the geographic factor.
Erin had other questions on her mind. How quickly would her MS return, and how badly, after the baby was born? What would the future be like? Could Nick handle the consequences? Would they have a support system? Giving up the cocktail of medications she'd taken for several years, to avoid possibly harming the fetus, was also a source of worry and unpredictable effect.
For Nick, one thought lingered heavily — a conversation he remembered vividly from before they were married, when he told his 26-year-old, career-minded companion how important it was to him to have a child. Now those words haunted him. "Is it fair to put her through this?" he wondered. "If she gets worse, I'm gonna carry this with me."
Now, the couple wanted a child, but at what cost? They gave themselves a six-month window. Otherwise, they'd look to adopt.
The day the Mussers learned of Erin's illness was like a movie on the Lifetime Channel — the doctor with a tear in her eye, the feeling that it was all happening in slow motion. After 14 years together, the vivacious redhead and the chef-violinist operate as one, speaking in alternating spurts. They remember their eyes meeting that day, anticipating bad news.
It was Dec. 23, 1998. Erin, they were told, had chronic progressive MS, and a spate of seemingly unrelated miseries she'd endured since graduate school suddenly made sense — the falling, fatigue, the periodic vision loss and bladder dysfunction. At their wedding reception, she bolted from the receiving line five times to go to the bathroom.
They were things Nick and Erin had learned to rationalize and build their lives around since meeting a decade earlier at Lake Union's Rusty Pelican, where he was a chef and she was a cocktail waitress in the upstairs bar. A member of the Lake Union Civic Orchestra, Nick has slicked-back hair, studs in both ears and a low, thick voice with a gavel-like authority. But it was his wit that helped vault Erin past the depression that followed her diagnosis.
Besides, Erin wasn't the type of person to live her life as elevator music. When people awkwardly pretended her polio-style Lofstrand crutches weren't there or, as she got worse, spoke down to her — or not at all — if she was in a wheelchair, Erin upped the volume. She'd announce, "Here comes Ol' Wide-Body with a couple of canes" whenever she entered a room. When an airline ticket agent shouted over the counter, "Do you need any extra assistance?" Erin answered: "My hearing is just fine. It's my legs that really suck."
Last year, she got a new motorized wheelchair and couldn't wait to try it out, whipping around corners like a Mazda. "People were crossing themselves," she laughs. "It was awesome."
She and Nick still went to Mariners games, or to the zoo, or to dinner and a movie. They just adapted: Two days of rest for Erin beforehand, two days after. "You have this disease; this disease does not have you," she was fond of saying. "We're not going to change our lives."
Life coach Maureen Manley, a friend of the Mussers who also has MS, says they embody all she teaches clients about dealing with life-altering illness, redefining their lives together. "I think they're the most awesome couple on the planet," she says. "They're a great team."
Soon after Erin's diagnosis, the Mussers went on a mountain hike. She couldn't do it, really, but next thing she knew Nick had her on his back and had carried her all the way to the top. "People were clapping and cheering," she says.
Nick downplays it. "If anything, they were freaked out and trying to get out of the way," he says. But it's a special memory for Erin, a defining moment in their lives, illustrating her husband's enduring good humor and stability.
A few years ago, Erin nominated Nick — successfully — as Redbook magazine's "Husband of the Year" for 1999/2000, which got the couple flown to New York for a national TV interview. "It was very embarrassing," he says. And while he's bummed that Erin can't hike with a 40-pound load anymore, she never liked it much anyway. "I've never had to focus on things we've lost," he says. "I don't feel like we've missed out on anything."
Erin: "He still loves me. Many marriages fail. That's one of the reasons I wanted to nominate him. It's not like he feels sorry for me. He knows that if he did he'd be in big trouble."
'I can be a mom'
Three months after they'd decided to try for a baby, they got the news they'd been hoping for: Erin was pregnant. There was no turning back now from the bright or dark possibilities ahead.
"When I was first pregnant," her mom said to her, "I felt like hell."
Replied Erin, plagued by MS for a decade: "I haven't felt that good in years."
With pregnancy, she felt immediately transformed. She didn't even need her canes anymore. Her fatigue faded; she had better control of her bladder. It was as if she was a different person. I can do this, she thought. I can be a mom.
Now Nick could tickle her feet and she'd feel it. She and their dog, Astro, went on walks around the neighborhood. She traded e-mails with friend and fellow MS patient Amy Hoppe, mother of a 6-month-old daughter: Wasn't being pregnant great? It's the best thing — you have so much energy! At one point, she realized that she'd even forgotten how to use her special crutches.
"Right now," she said in September, her seventh month of pregnancy, "I feel so amazingly good."
Even her doctors were surprised at the effects. "She did spectacularly well," says Swedish Hospital's Dr. Lucas. "We're trying to figure out a way to keep her pregnant the rest of her life."
A woman's immune system adapts to pregnancy to avoid rejecting the fetus as a foreign body. Somehow that change reduces the effects of MS for many — but not all — women, Lucas says, either by preventing misguided T-cells from damaging nerve fibers or from even targeting them in the first place.
Research is ongoing. One California experiment involves providing low-dose estrogen to MS patients. Lucas has one patient who can walk unassisted until her period hits. "Then she needs a cane," Lucas says. The woman responded well to prescribed daily oral contraceptives.
Other studies point out the higher incidence of other auto-immune diseases like lupus and rheumatoid arthritis in women. None are diseases of age, Lucas says, meaning hormones must be involved in some way. "We're just starting to scratch the surface," she says.
Nearing reprieve's end
With their baby due in late November, Erin began going to monthly support group meetings at Virginia Mason Medical Center for mothers with MS, who described in emotional detail the physical challenges of parenthood. "My son ran into the street," one woman said, bursting into tears. "I couldn't catch him because he was so much faster."
Listening to them, Erin couldn't help but feel guilty sometimes. What was she doing? What business did she have bringing a child into the world? Still, none of the mothers regretted her decision, and like Nick told her, even moms without MS faced similar concerns.
With the final month at hand, they attended a newborn-care class at Swedish, one of a half-dozen expectant couples. Instructor Carolyn Pirak, a petite and polished mother of a 2-year-old, pointed out the blank-faced rubber infants piled on a nearby counter. "Everybody take a baby," she said.
She urged the soon-to-be parents to load up on sleep before their baby's arrival: "These little people will change your whole world. Looking back, I would have worried a lot less about birth announcements."
On her notepad, Erin jotted: Get Some Sleep Before Giving Birth!
At the break, Pirak had them practice holding their infants. Erin, baby in hand, went across the hall to get drinks with the freedom of movement allowed by her pregnancy; none of the other couples had a clue about her MS. The hospital cafeteria was populated mostly with wandering class participants armed with trays and rubber babies.
"We look ridiculous, don't we?" Erin said. "Like our babies will be perfect, just like this." She eyed the blank face and tweaked the baby's chest as if adjusting the sharpness on a TV set. "I'd like a little more personality, I think."
Waiting behind, Nick admitted they still had days when they lashed out in fear, anger and uncertainty. He knew Erin worried about the future, that it scared her to think she'd wake from this land of Oz and everything would be dark and gray again. He reassured her he'd be there, to do whatever it took to build a family. Having a baby would be exciting, he said, but would also mean the end of "this great time, this vacation almost, that she's had."
'We had a lot of love to give'
One night, several weeks before her baby's arrival date, Erin wasn't feeling well. She called the doctor twice, in so much pain she couldn't sleep. I don't know what it is, she said. Hemorrhoids, maybe.
"Erin," Nick asked, "if you're having so much trouble handling hemorrhoid pain, how are you going to handle labor?" The question had occurred to her, too.
The next morning at the hospital, the doctor checked Erin to see if she was still on schedule. Her eyes bulged when she saw what was going on. We have to get into the delivery room now, she said.
Everything started moving at a breakneck pace, orders barked, nurses scrambling here and there, and Erin imagined comical background music, something like "The Sabre Dance," playing in her head.
She pushed four times. The whole thing took six minutes. The doctor said: "Not only is it the biggest hemorrhoid I've ever seen, it's also the cutest."
Alexander Yovan Musser, a healthy baby boy, was born Nov. 6. They call him Xander.
Within a few hours, Erin was injected with the first of several monthly doses of a new post-pregnancy MS treatment, intravenous immuno-globulin. The intention is to offer the body a parachute as it drops to normal hormone levels and reduce the exacerbations suffered by women after their baby's delivery.
Returning home, the Mussers found their entryway adorned with a welcome banner, reflecting a more important support system in place — four people in the neighborhood, plus a friend of the family, who have offered their help so that Erin can sleep and not worry. As much.
Inside, Nick rapped Xander gently on the back, eliciting a healthy burp from their son. In the days that followed, Erin proudly carried him around, savoring the moments, but found herself wondering, too, "when things are gonna" — she paused, for a second — "start going back."
While she misses her corporate-recruiting days, she's refocused her remaining energies on volunteering with the Seattle chapter of the National Multiple Sclerosis Society, advocating for newly diagnosed MS patients, promoting awareness of the disease and chairing the agency's government-relations panel.
"In a way, she still has a career," Nick says.
Two months later, Erin feels her symptoms returning, aware those canes and wheelchairs will eventually be excavated from the closet. Already she needs help walking, and that, and all that it implies, is just devastating. "Things are starting to hit me a little bit," she says. "It just feels worse because it was so good for a while."
Doubt sometimes haunts her: Should I have done this? As a mother, there are things she won't be able to do. "But you're going to be able to do things a lot of mothers can't," Nick tells her — to stay home with her child, for example, to not feel she's hurting her career in the process.
Why do this?
Nick: "We felt like we had a lot of love to give."
Why do this?
Erin: "I just happen to have this husband who is just incredible." (Nick: "When is he gonna be here?")
Why do this?
"Well," Erin says, motioning to her new baby. "Look at him."
And look at him they do, watching even when there's seemingly nothing happening, seeing themselves in a child who has dozed off to the vibrations and purrs of a motorized baby chair. It's like watching flames in a fireplace — you just get wrapped up in it, in each little flicker of change.
Look: This little boy, with blue-green eyes and dark brown hair.
Copyright © 2003 The Seattle Times Company