At times, Debbie Hamm’s multiple sclerosis causes searing pain, tingling and numbness, all of which conspire to restrict her movement.
But on Feb. 22, – her 40th birthday – the Apex resident did little else but move.
Starting at 7 a.m., she walked 22 miles from Apex to Holly Springs to raise money and awareness for MS research. As of last week, the walk had raised more than $3,000.
Hamm is a relentlessly positive person, driven by her faith and the notion that her condition obligates her to improve the lives of others with MS. She mentions she worked at Disney World for two years in her 20s, which might be the least surprising thing about her.
“It has been a huge gift for me,” Hamm said of living with MS. She and her group of walkers were on a lunch break at Anna’s Pizzeria in downtown Apex.
“There’s a 21-year-old woman who’s walking with us today; she was diagnosed just last year,” Hamm said. “We happened to meet through the MS Society because she wanted a mentor. If I’m able to help people like her just a little bit, then MS has given me more purpose than I could have ever imagined.”
Hamm’s strategy for dealing with MS has been to simultaneously embrace the disease and defy it. Since her diagnosis, which immediately followed the birth of her youngest child, she’s come to partly define herself by her involvement with the MS community.
But she’s also fought back.
In addition to this walk, she’s climbed to the top of New York’s Rockefeller Center. She’s gone on 50-mile bike rides and 50-mile walks, sponsored by the MS Society, and participated in the Society’s annual walk in Raleigh each year since she learned she had the disease. And she’s raised three children. Hamm works from home and picks up some parenting slack for her husband, whose job takes him out of town three days a week.
The MS Sisterhood
Hamm’s situation is not uncommon. Between two-thirds and three-quarters of those living with MS are women. Most are diagnosed between the ages of 20 and 50, when the demands of motherhood are often greatest. Unsurprisingly, the community around the disease tends to resemble a sisterhood.
Hamm remembers walking into an infusion clinic to receive treatment one day and running into three of her friends, there for the same reason.
“That’s like going to a restaurant,” she said.
Hamm said that encounter inspired her to put on her own walk. She expected it would be a solitary affair, but eight other women asked to join her.
“I decided I have to do more,” Hamm said. “We do a lot, but there’s always more we can do in the community so people understand what it’s about.”
Shannon Hinson, vice president of development at the Carolinas chapter of the MS Society, is one of Hamm’s friends. She said that kind of openness and optimism about the disease is especially valuable, because MS otherwise can be invisible in everyday life.
“She’s able to serve as a bridge to connect other individuals to others with MS and give them a picture of what a healthy life can look like,” Hinson said. “She’s very much a go-getter, and I was immediately drawn to her.”
That balance isn’t always easy, though. Nicole Dozier, Apex’s mayor pro tem, lives in the same cul-de-sac as Hamm. They’re close friends as well. She remembers the day Hamm came over and told her about her diagnosis over lemonade on the back porch. Since then, Dozier said she’s tried to help Hamm make time for herself.
“One night we just went out and got her feet done, got some ice cream, things like that,” Dozier said. “Her having to take care of Debbie, too, can be hard.”
Living with MS
Then there are bad days even a pedicure can’t salvage.
“The exhaustion is something you can’t even describe,” Hamm said. “It knocks you out.”
Sometimes Hamm wakes up in the middle of the night with a constricting pain around her chest. She said it’s an “MS hug,” a gentle term for something that’s sometimes painful enough to send her to the emergency room. Stress tends to bring on these incidents, but the cause of MS itself is unclear.
Experts think environmental factors trigger a genetic predisposition that appears to be most common among those of northern European ancestry. At least 2.3 million people live with the disease, according to the MS Society, including 18,000 in the Carolinas. MS is rarely fatal, although those living with it experience, on average, a 7-year difference in life expectancy.
But that gap is shrinking. Increased awareness of the disease and funding of research have made life with MS more manageable than it once was.
“There were no treatments for people living with it until 1993,” Hinson said. “Now, it’s hard even for us to keep up with how many drugs are currently approved. We’re up to 13, although that changes week to week.”
Exercise used to be actively discouraged for MS patients. Research in recent decades has now suggested it could be critical to improving their quality of life.
Hamm said she can’t do without exercise, and she seems to relish the knowledge that the funds raised by her walk, something that once wasn’t allowed, could lead to a similar revolution.
For now, though, she seems most concerned with eating lunch, making it the final 10 miles, and watching what happens along the way.
“A lot of these women have never met,” Hamm said of the other walkers. “They’re getting to know each other. My friend who’s newly diagnosed, she’s learning to be OK with her disease, and that’s why we’re here. I feel like I’m giving a punch to MS every time I help that happen.”
Henry Gargan: 919-460-2604, @hgargan