Joyful moments while living with MS
People living with MS find happiness in the small things.
by Shara Rutberg
In springtime, you can find Astrid Baran on her hands and knees in the dirt among a tiny forest of 50 pepper plants, delicately dabbing the center of a dime-sized, white pepper plant flower with a long paintbrush to collect pollen, which she’ll then brush on another blossom — like a giant bee in a floppy sun hat and garden gloves. For two years, she’s cross-pollinated different pepper varieties on a quest for the perfect hot pepper.
“My little urban garden generates the greatest joy in my life,” says Baran, 40, who transformed her Staten Island, New York, backyard into an urban oasis with flowers, vegetables and a mini orchard of peaches, apricots, plums and figs.
“The garden gets me out of bed every day because everything needs tending,” says Baran, who was diagnosed with multiple sclerosis in 2011. “The maintenance keeps my body strong and agile. There’s nothing like a beautiful and fragrant rose greeting you in the morning.”
Joy for health
In a National Multiple Sclerosis Society Facebook post asking, “What brings you joy?” commenters mentioned a wide range of joyful sources: Barbecuing to sheep tending. Family and religion. Pets and nature — from seas to sunrises. Creating — through music, painting, quilting, photography and even Legos. Others, aware of living with the challenges of their disease, mentioned “being able to stay in my home” and a simple “bowel movement.”
Not only can moments of joy brighten your day, they’re healthy. “Feeling joy and happiness has positive effects on health, including the immune system and the cardiovascular system,” says Megan Weigel, an MS-certified nurse specializing in neurological care in Jacksonville Beach, Florida. “To put it really simply, moments or glimpses of joy just feel good. The brain releases neurotransmitters when we feel joy that encourage positive mood and other positive effects on the body.”
Those benefits linger even after a joyful moment has passed. “Just like chronic stress can cause negative changes in health, regularly investing in activities that allow us to feel joy can encourage positive changes as the body moves out of ‘fight or flight,’” Weigel says.
“MS stole my joy for a long time,” Baran recalls. “I had to learn how to find it again.”
Before MS, she loved going to concerts and would walk around museums for hours.
Feeling especially cut off from people during the pandemic, Baran realized she needed to find a new source of joy. “Getting my hands into that dirt was the best feeling in the world,” she says. As a kid, she’d picked vegetables for dinner from her family’s garden but hadn’t pulled a weed in 20 years when she turned to her yard. “I felt that connection in my body and started using it more, and it’s given me a lot of strength. Gardening allows me to bring beauty into my life, as well as a whole new soundtrack of music: the plants bring the bugs and bugs brings the birds,” says Baran, whose first name, Astrid, coincidentally, is a type of flower.
Johny Driessen, 39, intentionally works at finding daily joy at home in Salt Lake Valley, Utah. “I try to focus on the little things,” he says. “A beautiful day. Time with my family. A hummingbird at my feeder. MS is a great reminder that none of it is guaranteed to me, so I choose to enjoy what little blessings come my way each day.”
“I could focus on the things that bring me down, or I can take a photo of a beautiful sky, chase my kittens, cuddle my wife, talk to my parents, watch the hummingbirds, wrestle with my granddaughter,” says Driessen, who was diagnosed with MS in 2015. There’s an endless amount of good things in the world to be thankful for. You just have to be mindful.”
Three of those good things are Yuffie, Rikku and Billie, a cat and two kittens Driessen and his wife rescued. One of the kittens is blind, the other is half-blind. “They have livened up the house with their antics despite, or maybe because of, their special needs,” Driessen says. “Knowing that we’ve provided a safe, happy home for them brings me a lot of satisfaction, though even if they weren’t special needs, the love they return with every head bump, purr session and slow blink would be enough. Really, Rikku and Billie also remind me that if they can be as happy and silly and active with their disabilities, so can I.”
In Billings, Montana, Jill Gibbs’ two dogs are wagging balls of joy. “When life gets me down, they are always there for me, demanding a walk or sticking a tongue up my nose. Can’t have a bad day with them in my life,” says Gibbs, who has MS, but says she does not have debilitating symptoms. “I am fortunate to be able to do so much with my dogs,” she says. “Agility, obedience, rally, trick dog, nose work, dock diving and fast CAT [lure coursing]. I know my MS symptoms would be a lot worse without them keeping me active.”
David Wilcox, another Facebook community member, posted that he finds joy in shaggier beasts: “I take care of some sheep and they, in turn, take care of me. I’m a strong believer in animal therapy.”
Finding joy “is not always easy with this disease,” Driessen notes. “But if you’re persistent, you’ll find a way to make things work.” After his diagnosis, he tried revisiting one childhood joy: biking. Utah’s summer heat, however, made it difficult. Then, Driessen discovered electric bikes. “It’s spectacular!” he says. “I can drench a couple of cooling scarves, tie them around my head and neck, and if I run out of energy on the ride, I can always rely on the motor to get home. I bike an average of 14 miles, three to four days a week. Where there’s a will, there’s a way.”
Holding onto happiness
Where to start? Keep it easy, says Weigel, who recommends an exercise called the Quick Coherence Technique (HeartMath Institute). “The gist of it is to imagine a situation when you felt loved, cared for or rejuvenated,” she says. “Feel the whole scene in your body with all of its details for several deep, slow breaths. If you find this hard, examples can be imagining how you feel with a pet, or in your favorite place.”
If you’re feeling hopeless, it’s important to seek mental health care. “It’s hard to find joy when you feel powerless,” she says. Finding moments of joy can help empower you. “The discomfort, exhaustion, anxiety is replaced, even if just for a moment, with a positive emotion.”
Facebook community member Theresa Hempinstall admits it’s hard to find joy amid pain on a bad day. “So, whenever something joyous happens, I write it on a slip of paper, fold it and place it in a jar. On New Year’s Eve, I get them out to read and I count my year’s blessings instead of my disasters. Joy remembered.”
“It’s important to sit with your grief for a while,” Baran says. “And then be open for that little epiphany,” that can help identify what could be your regular source of joy. “It could happen walking through the supermarket or being with family — just something that reminds you of who you were before this horrible disease changed you,” she says. “When you feel that little glimmer of happiness, grab it.”
These days, Baran grabs joy — and the holy grail hot peppers — in her garden, amid the scent of roses, serenaded by birds. She cultivated an orange pepper, “so hot my nose runs and so sweet it tasted like fruit — perfect for me because I love spicy food.” And, the peppers help her inflammation as well, letting her move her hands more freely in the dirt and plants.
Joy begets joy.