Samantha Guerry of Bethesda learned she had multiple sclerosis at age 26, but that didn't stop her from anything.
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If she ever writes an autobiography, Samantha Guerry says she will call it Speak Softly and Carry a Big Stick. Guerry, 42, has multiple sclerosis, an autoimmune disorder she compares to being in a chain of car accidents—the numbness and loss of balance that characterize the disease can arrive without warning, and the severity is unpredictable. “At the beginning, you’re never sure whether you’ve been hit by a bicycle or a truck,” says Guerry, who has had to relearn how to walk several times and now uses a cane to get around.
Tall and striking, with long, dark hair and sea-green eyes, the Bethesda resident is not the type of woman who would settle for an aluminum cane from a medical supply store. Guerry’s cane “wardrobe” includes a hand-carved walking stick from Nepal, a high-tech carbon model, and her favorite: a cane with a silver horse’s head made in Greece, a gift from her father. Another cane is an antique with a hidden compartment for Scotch. She doesn’t drink Scotch, she says, but it amuses her to know that the hideaway is there.
Guerry was 26 and newly married when she was blindsided by a diagnosis of MS, which has no known cause or cure. According to the National Multiple Sclerosis Society, MS attacks the central nervous system, which is made up of the brain, spinal cord and optic nerves. Symptoms of MS may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision, according to the MS Society. The Centers for Disease Control and Prevention points out that “MS is a progressive and usually fluctuating disease with exacerbations (patients feeling worse) and remissions (patients feeling better) over many decades.” Though the disease is rarely fatal, its unpredictability led writer Joan Didion, who also learned as a young woman that she had MS, to call it a “story without a narrative.”
Guerry grew up in Kensington and attended the Holton-Arms School in Bethesda. An avid horseback rider and mountain climber, she spent one high school summer at the National Outdoor Leadership School, hiking 150miles with a heavy pack through the Rocky Mountains. In 1985, during the spring of her freshman year at St. Lawrence University in Canton, N.Y., she began to experience odd symptoms, including numbness on one side of her body, as if wearing a tight girdle, and occasional losses of balance. She consulted a doctor, who said her complaints were stress-related.
“I’ve heard this over and over from young women—that their early MS symptoms were dismissed as stress,” Guerry says, adding that the disease occurs three times more often in women than in men. Ironically, she says, stress can worsen MS, so young women tend to see a doctor about their symptoms during stressful times of their lives. This was certainly true in Guerry’s case. Around the time her symptoms first appeared, her father, Roger Semerad, who was 45 and assistant labor secretary under President Ronald Reagan, was diagnosed with MS. Semerad’s MS was found to be a type known as chronic-progressive, a form of the disease characterized by a lack of remission between exacerbations. His disability is severe, Guerry says, and his decline has been very difficult for her to witness.
Although not technically hereditary, researchers believe MS has a genetic component. According to the MS Society, the 400,000 Americans with MS are most often of northern European descent. Both Guerry, an only child, and her parents were alarmed that she had symptoms similar to her father’s. When Guerry went for an MRI—a new technology in the mid-1980s—a brain lesion showed up on the scan. But doctors didn’t link the lesion to MS, and it was thought to be the result of a concussion she’d sustained years earlier in a fall from a horse.
Guerry’s symptoms subsided, and after graduating from college in 1988 with degrees in English and philosophy, she moved to Washington, D.C., where she met an environmental lawyer named Bill Guerry at a Georgetown party. They fell in love and married in 1990. “At that point, I didn’t have any symptoms,” she says. “I was an athlete, an active person, and Bill’s a really active person.” They both enjoyed kayaking and lived in an apartment close to the Potomac River. Then Guerry’s symptoms returned, and in the spring of 1992 she consulted her father’s neurologist. A second MRI showed more brain lesions, this time recognized as a clear sign that she had MS.
“The doctor was very kind, but there was not much he could do for me except to tell me to come back every six months to a year,” Guerry says. “I’d gone to see him alone, which was not a great idea. After I heard the words ‘multiple sclerosis,’ I really don’t remember the rest of the conversation.” What Guerry does remember is walking out of the doctor’s Georgetown office and feeling that her life and her plans had come to a screeching halt at the age of 26.
There was no Internet then, she says, so she went to a bookstore to look for information about MS. What she read, along with what she had seen in her father’s battle with the disease, made her keenly aware of the devastation that MS could cause and gave her little hope for her own future. But, she says, “I have a tendency to push up against boundaries to see if they’re real.” She resolved, she says, to “just ignore the MS as much as I could and keep on keeping on.”
She and Bill decided to buy a house close to the Potomac. While visiting Bethesda’s Brookmont neighborhood, they spotted a sign reading “Brookmont loves its Olympic kayakers” (Scott Parsons is among the well-known kayakers who live there these days). “We saw all the people out walking, and on their bikes and walking their dogs, and thought: This is definitely our kind of place.” In 1993, the Guerrys bought the corner-lot clapboard house they still call home, a colorful stack of kayaks now leans against their white picket fence.
Guerry’s symptoms were mild for the first few years after her diagnosis, and except for telling family members and a few close friends, she kept the illness a secret. Her type of MS, known as relapsing- remitting, meant that she’d have periods of recovery after an attack. “Once I had an exacerbation, and for a couple of months I had a crutch,” she says. “And I just made up a story, because I was working and I didn’t want people to know or pry. I’m sure people must have thought I was awfully accident prone.” But the burden of silence was heavy. “I didn’t have anyone to talk to [about MS], and when everyone else you know is young and vibrant and on the go, you feel a bit isolated,” she says. One day, a friend of Guerry’s parents who been dealing with relapsing-remitting MS for years invited her to lunch. The relief of meeting someone who understood how she felt, she says, caused her to burst into tears.
Although doctors had traditionally advised women with MS to avoid pregnancy out of fear it would cause an exacerbation, a new generation of neurologists now encourages them to have children if they wish. “A certain number of women actually feel better when they’re pregnant because their immune system is suppressed,” Guerry says. But that was not her experience. Her MS worsened during her pregnancy, and in 1997, about neighbors to do what she couldn’t. Guerry’s mother would drive her and Will to pediatrician appointments.
Little by little, Guerry’s nerve function returned. She began an intense regimen of steroids, followed a strict diet and took physical therapy three times a week. She grew stronger and relearned how to walk alongside her toddler son. Less than two years after the exacerbation began, she and Bill flew to Solitude, Utah, a beautiful spot in the Wasatch Mountains where they had skied in the past. “Sam felt the only way she could figure out if she could still ski was to try,” Bill says. “She was trembling and had tears in her eyes as we rode up on the ski lift.” Guerry asked her husband to leave her alone on the mountain, and he did, thinking he’d check back a few minutes later to make sure she was OK. He found her at the bottom of the slope, crying again from happiness.
Although that triumphant moment was followed by more health setbacks, Bill says his wife’s achievement that day “opened up an enormous spirituality in her, an appreciation for what’s precious and divine. …She’s always been a strong, determined person, but now she really, really doesn’t sweat the small stuff.”
“Bill’s always been supportive, but without babying me,” Guerry says. And Will, now 13, “is a very emotionally intelligent child,” she says, recalling a time when he was little and watching her inject her daily medication. “He came up and put his hand on my knee and said, ‘I’m sorry you have to do that, Mommy.’ And he couldn’t have been more than 3.”
Now, she says, “he’s a pretty happy-go-lucky kid, but he doesn’t take things for granted. He has an attitude that…you can be happy without everything being perfect.” She and Will both play the guitar (he plays electric bass) and enjoy woodworking, a skill her father taught her, Guerry says. She points to an end table piled with books and explains that she made the table from a tree that fell at their weekend place in Virginia. Guerry also gardens and paints. And the whole family still kayaks; last year, Will qualified for the AAU Junior Olympic Games. “We do have a lot of hobbies,” she says with a laugh.
In 1994, Guerry began studying for Her MBA at Johns Hopkins University in Baltimore. It took her six years to complete the degree. “Sometimes I’d start out a semester just fine and finish up in a wheelchair,” she says. After graduating in 2000, she decided to create her own marketing and communications company, thinking that working part-time from home would be the perfect option for the mother of a young child. But the business, Sightline Marketing, grew, attracting clients ranging from start-ups to established companies such as Rolls-Royce and General Dynamics. Guerry eventually had to find office space for her 15 employees, and last year, before she closed the business, it was voted one of the 50 best places to work in Greater Washington by the Washington Business Journal.
Guerry had an exacerbation of her MS last October, and her doctor recommended that she stop working in order to avoid further compromising her health. Closing the Fortune 5000-list company, she says, “was one of the hardest decisions I’ve ever made. I’d put so much of myself into it, and as a group we were like family. But this was the seventh exacerbation since I started the business, and I just couldn’t physically keep up with the demands anymore.”