The Secret Life of Carla Basante: Fighting for independence, self-esteem on World MS Day

• Carla Basante, a 51-year-old single parent, hopes her multiple sclerosis allows her to walk her dog or make dinner when World MS Day is commemorated around the globe
• Her condition, however, varies from day to day and often she is so fatigued that she spends all day in her pajamas and takes naps
• The Lebanon Township residents says life with MS is a constant battle to retain her self-esteem and self-identity
• She meets with other people living with MS and recently took part in a study at the Kessler Foundation in West Orange

Editor’s note: “The Secret Life of  …” is a weekly feature looking at the fascinating people across Central Jersey

Carla Basante may wake up and take her dog for a walk before returning home for a cup of tea, a gluten-free cookie and a little time in front of the Hallmark Channel.

Or, her body may ache from the moment she opens her eyes, leaving her to spend the rest of the day trying to summon enough energy to make herself something to eat.

So even though Wednesday's World MS Day was created to commemorate “all the ways people affected by MS maintain their independence and get on with their lives,” and the goal is to flood social media with #strongerthanms, the reality is Basante’s multiple sclerosis might render her too weak to so much as venture past the front door of her home in Lebanon Township.

“I refer to her as a bitch,” Basante said. “People go, ‘Why do you call MS a her?’ It’s because she can be a real bitch at times. I have to work with it. I can’t work against it. I can’t hate it because it’s part of who I am. I can’t change it because there’s nothing that I can do to rid myself of it.

“So it’s difficult at times when you wake up every morning and you say to yourself, ‘This is going to be a good day. I can move all my limbs.’ And you pray. I meditate, I pray. I’m thankful. I’m blessed,” she added.

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Living with multiple sclerosis

Life is a swirl of emotions and experiences for the estimated 2.3 million people globally living with multiple sclerosis, whose myelin in the cells of the white matter in their brains is breaking down and making it harder for signals to get from one place to another.

According to the National Multiple Sclerosis Society, the most common symptoms are overwhelming fatigue, visual disturbances, altered sensation and difficulties with mobility, but it could also cause blurred vision, slurred speech, tremors, numbness, problems with memory, paralysis, blindness and more. It can cause great physical pain and/or affect a range of high-level brain functions.

There is no cure.

MS is particularly cruel since it typically manifests itself in people in their 20s and early 30s, just as they’re finishing school, launching careers, falling in love, starting families.

They’re people just like Basante, who was diagnosed in 1997 with relapsing remitting MS after she was in a car accident. She says she wages a constant battle to keep multiple sclerosis from robbing her self-identity and self-esteem.

And especially her independence. She used to work at the American Cancer Society. Heck, she’d often pick up a second job working in retail, like at Aveda at the Short Hills Mall. But since her condition has advanced in the past nine years or so, not only can she not work, but she’s decided it’s best if she stops driving.

Basante decided to put away her car keys after an incident she describes as “beyond scary.” She woke up from a nap and couldn’t move her arms or legs. Helpless, she called out to her son, Joseph.

“My son couldn’t understand and he’s saying, ‘Mom, just move.’ And I couldn’t,” she said. “He was like, ‘Come on, let’s go to your bedroom.’ And I’m like, ‘Honey, I can’t. You’re going to have to lift me up and put me on the couch.’ I had to tell him how to go behind me and put his arms under my armpits and lift me up and put me on the couch.”

Her ray of light

Joseph has been a ray of light on Basante’s darkest days with MS, breast cancer, eye surgeries and a lingering back injury.

It hasn’t been easy to see the woman who used to drive him to practices and games have to hug the walls to get around the house sometimes, but the Voorhees High School sophomore has tried to stay strong for his mom. He’s getting pretty good at whipping up a salad for her, and he always pitches in with the cleaning.

Joseph wishes he could wave a magic wand and give his mom back “the ability to do whatever she used to do without limitations, like driving, going to the beach, stuff like that. She loves going different places. She loves the beach, especially, and it’s just hard for her.”

There are no magic wands, but there is the Kessler Foundation in West Orange. The 51-year-old single parent recently participated in a study in which people with MS exercised in a pool to determine if it could improve their symptoms. The study was the brainchild of Helen M. Genova, Ph.D., who is a research scientist in the Neuropsychology & Neuroscience Lab of the Kessler Foundation Research Center.

Although the study is ongoing, Genova has heard anecdotally that the participants have enjoyed more energy, better balance and improved mood. And beyond that, they’ve enjoyed the social camaraderie that comes with being in the class and doing the same heal-to-toe walks across the pool.

“MS can be very isolating,” she said. “You can’t get out there as easily as before and so it’s difficult to find social connections with other people, especially people you used to be good friends with. So this is a place where they can all come, they are all going through the same thing. It’s three times a week, so they begin to enjoy the friendships they form and the way that they all support each other.”

The study has given a sense of empowerment, if not a glimmer of hope, to people such as Basante.

“You don’t know what’s going to happen at any given moment, and that’s the scary thing about having MS,” she said. “But in this day and age when there is a place like Kessler that does all this research that can be adapted …”

Basante’s voice cracked with emotion. She paused for a moment, then started again.

“What they’re doing is just incredible because we don’t necessarily have to throw drugs down people’s throats. We can work together in terms of rehabilitation. We just want the best quality of life possible.”

About World MS Day

World MS Day is officially marked on the last Wednesday of May every year, though events and campaigns take place throughout the month.

World MS Day, led by the Multiple Sclerosis International Federation, unites MS organizations globally to raise awareness of multiple sclerosis and those affected by it in order to improve public understanding and support that will move us closer a world free of this unpredictable disease.

The theme of this year’s World MS Day is independence.

Some 70 MS organizations around the globe, including the National Multiple Sclerosis Society, have events planned and are encouraging people to join together and share their experiences with independence in order to help people better understand the complex nature of MS. Everyone in the global MS movement is sharing their story with the hashtag #strongerthanMS now displaying on worldmsday.org/stories.

About MS

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.

It affects more than 2.3 million people worldwide. the most common symptoms are pain, fatigue, visual disturbances, altered sensation and difficulties with mobility, but it could also cause blurred vision, slurred speech, tremors, numbness, problems with memory, paralysis, blindness and more.

There is no cure.

For more information, log on to nationalmssociety.org or worldmsday.org