subscribe | advertise | about | contact | home

MS. Superwoman:
A mother with multiple sclerosis facing the challenges we all face –
and then some – learns a lesson for us all: It’s OK to ask for help
by Teresa Moore

On good days, Erin Musser drops 2-year-old Xander at daycare, rushes off to answer the e-mails clogging her computer, coordinates an upcoming charity event with a won’t-take-no enthusiasm, discusses an upcoming Disneyworld vacation with husband Nick, and puts her son to bed with a favorite story.

On bad days, Erin worries what other people think when they see Xander harnessed to a tether to prevent the toddler from dashing away from a mother who cannot catch him. She snaps at Nick, not out of anger but from a subliminal jealously that he doesn’t face the numbing fatigue and nagging doubts that she does. She gives in to depression and refuses to be the funny, upbeat woman her friends and family adore.

And every day, there are the injections and the pills, the wheelchair or the cane, the catheters and the mandatory two-hour afternoon naps. Erin Musser has multiple sclerosis. But that doesn’t stop the Superwoman Syndrome that seems to infect us all from weighing on her as well.

“I sometimes feel like I have something extra to prove,” she says. “I need to be better so that people will not say, ‘Oh, look at that poor woman with the cane. She should never have had a child.’”

The 38-year-old admits she’s never heard those words uttered aloud. They’re just in her head, much like the mind-whispers so many women hear: Who are you fooling? You can’t do it. They’re on to you.

Musser first experienced symptoms of MS in college when she suddenly lost vision in one eye. Her sight returned, but then she began having problems with bladder control and balance. Ophthalmologists, podiatrists, sports medicine doctors, physical therapists and internists couldn’t pinpoint why. For six years, her symptoms worsened. Finally, friends who were knowledgeable about MS suggested she get an MRI. That finally resulted in a definitive diagnosis. Musser’s immediate response was to kick Superwoman into high gear.

No longer physically able to work in her job as an executive recruiter and trainer – something she realized within weeks of her diagnosis when she found herself sneaking naps in her car in the company’s garage – she called the Greater Washington Chapter of the National MS Society and started volunteering. With a long-held interest in nonprofit work, MS fundraising and advocacy became her job.

Still, not having a “real” career took its toll emotionally. “I’d worked since I was 15. Suddenly, I had no job. I’d just gotten married. I wanted to have a family. I was terrified,” she admits.

It was an unspoken fear that put the decision of having children on the back burner. MS is not inherited, nor is it exacerbated by pregnancy – in fact, symptoms typically lessen significantly in pregnant women. But Erin Musser worried silently that she couldn’t handle the physical demands of being a mom, while Nick Musser stayed quiet to keep from pressuring his wife into a decision she might be too afraid to make.

Then, a check-up with her neurologist, Dr. Sylvia Lucas, changed everything. “She said, ‘So, when are you going to have kids? You have a great support system. You’d be great parents,’” Musser recalls. “I said, ‘You mean that’s possible?’ Nick and I had stopped talking about it after my diagnosis.”
Musser gave birth to Xander in November 2002.

“It’s a struggle every day to determine what I can do and what I need help with,” she says. “I still think, ‘Oh, I can do it.’ But when I accept help, it feels really good.”

Help ranges from the daycare worker who picks Xander up at the car instead of having Musser walk down eight steps to the door, to her husband changing the bed linens in the middle of the night to deal with the aftermath of her bladder problems.

“He’s a wonderful man. I sometimes can’t believe that he’s still here with me,” Musser says of her husband, executive chef at Seattle’s Icon Grill and Redbook magazine’s national Husband of the Year in 2001.

“We were at a wedding recently and the minister said the most important word in a marriage is not forgiveness, but forbearance – every single day, dealing with what you have coming at you. Nick understands forbearance. I’m still learning it for myself.”

Like all parents, the two are awed by the impact Xander makes on their lives. Having MS – Nick Musser talks about it as their condition, not just hers – doesn’t mean they love their child more than other parents, but they feel especially blessed because they didn’t think parenthood was possible.

Musser tries to count blessings like those every day. But then, there are those occasional bad days when she gives in to depression or worries about the future.
“It’s not OK with me to feel bad. I fight it. I’m really quick to say, ‘Look at all the wonderful people in my life, I should feel so lucky.’ But you know what? Sometimes, this just sucks. I can’t deny those feelings.”

When she gets down, it doesn’t often last for long. She meets life head-on, and she’s teaching her son through example to do the same.

“I’m proud of the fact that I’m having him around all these different things – the wheelchair and the cane and the medications. This is normal for him. And guess what? It is normal. This is my life.”

Teresa Moore is owner and president of Moore Ink, which specializes in communications for nonprofit, health, education and human service organizations including the YWCA, American Red Cross, Youth Eastside Services and the University of Washington.

MS, Women and the Pacific Northwest

Multiple sclerosis is a chronic, often disabling disease that affects the central nervous system – brain, spinal cord and optical nerves. Researchers aren’t sure exactly what causes it, but they believe MS is an autoimmune disease. The body attacks its own tissue, in this case, the myelin, or fatty material that surrounds and protects nerve fibers. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision.

Washington state has one of the highest rates of MS in the world; approximately 9,500 people in the state have MS. The disease affects three times as many women as men.

Sometimes called the “prime-of-life disease,” MS usually strikes people between the ages of 20 and 50. The disease is believed to afflict some 400,000 people nationwide, and about 200 more are diagnosed every week. Worldwide, some 2.5 million people may be affected.

In 1992, when Erin Musser first began experiencing symptoms, little was known about how to diagnose MS, much less treat it. Today, there are many different drug treatments that help control the progression of the disease and manage symptoms. Research is promising and many, including Musser, believe a cause and cure are near.

For more information about MS – including support programs like the Moms with MS group – and other programs available locally for people with MS and their families, contact the Greater Washington Chapter of the National at 206-284-4236 or visit the Web site at www.nationalmssociety.org/was.

©2005 Caliope Publishing Company