Two years ago, a couple of weeks before her 28th birthday, Kelsey Mitchell began to notice some peculiar symptoms: numbness in her foot that spread to her hands, as well as odd sensations in her chest and abdomen.
She shrugged off the symptoms at first, but when they got worse, she consulted her primary care doctor, who immediately sent her to the emergency room. After many tests and two MRIs, she was diagnosed with relapsing-remitting multiple sclerosis (RRMS)—something that, until recently, was thought to be rare among African Americans. However, research has shown that it is at least as common in African Americans as in other population groups.
As an oncology nurse at the University of Alabama at Birmingham (UAB) medical center, Mitchell was used to bad medical news. However, her diagnosis came with an important reassurance. “I still remember the doctor saying, ‘MS won’t be the thing you die from. Something else will kill you. It is manageable like diabetes,’” Mitchell recounts.
In and out of the saddle
Like many people when they’re first diagnosed, Mitchell looked for resources to help her learn about and deal with her illness. Among the materials she received was a mailing from the National Multiple Sclerosis Society that mentioned the Bike MS fund-raising ride. Her boss at the time was an avid cyclist, so Mitchell told her about the event—a two-day, 155-mile ride along the Gulf Coast in Alabama. “I thought she might enjoy going to the beach as much as she’d enjoy the ride,” Mitchell recalls. She was right. Her boss, Leslie Ledbetter, was indeed interested.
As someone who has volunteered at a women’s shelter ever since college, Mitchell possesses both a dedication to service and excellent organization skills. Although not a rider, she worked with Ledbetter to build and manage a team of about a dozen cyclists.
“Leslie and I met with a representative of the MS Society to learn how to build the team,” Mitchell says. “At that time, I was not yet comfortable talking about my diagnosis, but Leslie was participating in my honor, so I had to push my discomfort aside and appreciate her willingness to do the ride.”
Mitchell posted on social media, managed the Bike MS and UAB crowdfunding pages, and coordinated with donors. “It was a lot of work, especially for a novice,” she says. She even helped design a wildly popular jersey for the team, the Blazing Saddles, featuring the university’s mascot—Blaze, the dragon.
“I don’t fare well in the heat, so I never pursued riding, but there were folks with MS who did ride,” Mitchell says. “I was blown away by their dedication.” The Blazing Saddles raised almost $17,000—nearly twice the average for similarly sized teams.
Joy is intrinsic
Managing a demanding career and organizing fund-raisers is a lot for anyone, but particularly someone with MS, who faces many additional challenges. Though the symptoms of MS are not always visible to the outside world, they can have a profound effect on daily life. “Fatigue is real, sensation changes are real, spasms are real,” Mitchell says. “People don’t always get it when I don’t feel up to doing certain things. I have a choice: I can take care of myself, or I can
do what others want and suffer the
Mitchell generally keeps her free time free and makes few commitments she might have to back out of later. “I’ve learned what is most important and how to juggle things, and most of all, I have learned to say no.” She adds, “Those true friends and family who want me to be healthy understand. Those who don’t eventually fall out of the picture. That’s OK with me.”
Mitchell’s greatest inspiration is her grandmother, who died at age 93, just a few months before the MS diagnosis. “She was a wonderful woman and incredibly strong, who lived a full life independently and on her own terms until her final hospitalization,” Mitchell says. “That’s what keeps me going day to day—her memory, and the hope that I can be half the woman she was. I resolved to face MS as gracefully as I was taught by my grandmother.”
Mitchell also draws strength from her faith and her philosophy of living. “There is a difference between happiness and joy,” she says. “Happiness is defined by happenings; joy is more intrinsic and rooted.” Her advice to others with MS—or anyone facing similar challenges—is based on this viewpoint. “Find the joy in the small things. Cry if you need to, then try again. If you stop trying, you’ll never know what is possible. There are so many ways to succeed, and success looks different for each person.”
Mitchell says having MS has even made her a better nurse. “I went into oncology because of the resiliency I noted in cancer patients, their families, and other loved ones. Since my diagnosis, I have learned more about resiliency. I understand the frustration of trying to explain that something is wrong with you. I understand the exhaustion of fighting to be heard and feeling like you are a bother when you are only trying to be responsible and autonomous. I know how stressful it can be to plan life around treatment,” she says.
“So now I know to take the extra time to find out how people really are doing. I know that people need to be heard and that it is so important to follow up on a patient’s complaints. I understand how the little things that take a bit more time help to build trust and relationships. My condition is not anything like a cancer diagnosis, but I know how a serious illness can challenge a person. Living with that challenge is a continual reminder of what my patients persist through.”
Whether she is educating people about cancer, raising money to fight MS, or just spending time in her peaceful garden, Kelsey Mitchell finds joy in service to others and a quiet yet firm commitment to taking care of herself.