‘I’m A Lucky Person With MS’: Runner Raises Money for a Cure
Sylvia Kemp’s attitude about multiple sclerosis is summed up in the necklace she wears that reads: “I Have MS. It Doesn’t Have Me.” She's raised over $16,000 for the Walk MS in Orland Park on Sunday.
Sylvia Kemp places her hands firmly on a wooden table, and braces as she stands up carefully. Her walk is slow, but her strides are calculated and with confidence, as she approaches a familiar face at Tribes Alehouse in Mokena. She’s on a first-name basis with the staff there. She’s on a first-name basis with nearly everyone she meets within a few minutes.
“You have two choices. Live or don’t,” said Kemp. “Life’s not a multiple choice situation, and I have too much to do.”
In the past year, the 48-year-old from Frankfort has started a Multiple Sclerosis support group at St. James Hospital, raised $150,000 at a single auction event for the facility and raised another $16,000 for Walk MS in Orland Park and other areas on Sunday – all while she faced serious health challenges brought by the disease.
“When you plug a lamp into the wall, imagine the outside of the wire is myelin and the inside wires are nerves,” Kemp said, about her condition. “For some reason, I attack the outside and the integrity of the cord is compromised. If you plug that in, it’s not going to work. After a while, it repairs itself or it doesn’t. I’m at the stage where it doesn’t.”
And yet she is making plans to go skydiving next year. Last week, before she even completed her fundraising goal for Walk MS with the National Multiple Sclerosis Society, she already was talking about events with Flossmoor Station and Rock Bottom Brewery after the walk.
About two weeks ago, she collaborated with Marc Alan Day Spa in Flossmoor to raise $2,000 for the walk with an all-day cut-a-thon at the salon.
“Geri and Marc Melyon are the most generous people I’ve ever met,” Kemp said, about the salon owners. “Not just for MS. They are always giving.”
Kemp has run in four major marathons, and worked for 15 years as a nurse with children suffering from cancer. She may no longer run or treat patients, but her natural intensity hasn’t waned at all. Kemp simply directed it elsewhere.
“I don’t want another generation to face the obstacles I faced,” Kemp said. “It’s vitally important to me that they find a cure for MS.”
‘I Always Felt Tired’
Sylvia Kemp was 20 years old when she felt her first flare up, an MS attack that can include any of 30 symptoms described by the National Institutes of Health. One day, while in nursing school, her vision was fuzzy in one eye. An eye doctor prescribed glasses for a weak eye muscle, and that was that. The fuzziness went away.
Eight years later, it happened again.
Kemp, the daughter of a Chicago police officer who grew up on the North Side, was the go-to nurse when a child needed intravenous solution. One day, she couldn’t see a child’s vein clearly to insert the needle. An ophthalmologist found a pale optic disc, which meant either MS or brain cancer.
“I worked with kids who had brain tumors. I knew I didn’t have a brain tumor,” Kemp said.
She felt a little relief at finding the cause of her persistent fatigue.
“MS fatigue is really debilitating,” Kemp said. “It’s not the kind of fatigue where you get tired throughout the day and hit a wall. You hit a wall like Tim Conway waiting for an elevator on the Carol Burnett Show, falling asleep.”
Working in inpatient care at Children’s Hospital in Chicago, Kemp said the kids she worked with helped her find strength after she was diagnosed. While her family cried upon learning her condition, Kemp thought of her patients.
“With the kids I took care of, I couldn’t look in the mirror and feel bad about a disease that may or may not disable me in 20 years,” Kemp said. “They were fighting for their lives, and most didn’t live. They taught me a lot about living and dying. And also about appreciating what you have.”
Kemp experienced flare-ups in subsequent years, but she embraced fitness, starting out on a treadmill “at 3 mph hanging on for dear life.” She worked her way up to run four different marathons: Chicago, New York, U.S. Air Force in Dayton, OH, and Boston.
It wasn’t until three years ago that the disease manifested in a serious way. After back surgery, she noticed her foot would start flopping after running about a mile.
Doctors later found the disease had progressed.
“It was the first time I cried,” Kemp said.
Kemp attributes her strength to her mother’s stern upbringing, and even though she had serious challenges ahead of her, she wasn’t ready to quit. She was ready for new experiences.
The New Sylvia
Over time, the MS symptoms stopped Kemp from running. When needed, she walks with a cane. Her left leg experiences spasms. Her right leg is weak. There are other symptoms happening.
“When I started having trouble, I cried myself to sleep a lot of days,” Kemp said. “I still cry. It’s healthy. I mourned the old Sylvia.”
But Kemp’s mother raised her to be tough, so she found other ways to occupy her time. Aside from fundraising, she and Terry Brown started the MS Mission Possible support group at St. James Hospital.
The group works like a democracy, bringing in resources and speakers at the members’ behest. Members were interested in meditation and Botox – used to stabilize weak muscles and tissue among MS patients – they brought on speakers with those expertises, Kemp said. Some members don’t show visible symptoms, while others are in need of a lot of care.
Each meeting starts with the members saying a St. Francis of Assisi quote, “Start by doing what is necessary. Then do what is possible. Then suddenly you’re doing the impossible.”
Kemp also finds solace in a gratitude journal she writes her blessings in, often relating to her support system.
“I have a great husband, and beautiful girls,” Kemp said. “I have amazing friends who help keep me going. I want to live, and I have a lot to live for.”
Now the only question for her is what’s next?
“I think I’m going to skydive. I’m afraid of heights, but why not?” she said, with a smile. “I’ll see if the group wants to do it. I just have to make sure not to eat before.”
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