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“In essence, your sense of self and confidence can be challenged by MS,” says Kevin Alschuler, PhD, a psychologist with the University of Washington Medicine Multiple Sclerosis Center.
MS can refocus who you are in relation to your family and friends, your vocations, avocations and the world around you. At its deepest level this disease can make you rethink your life’s values.
“Most of us don’t slow down enough to really take a hard look in the mirror,” Alschuler says. “I have patients who say while they would rather not have MS, it has created an opportunity to recognize who they are and what they want to focus on in life.”
Alschuler says both nature and nurture can affect how people with MS build and keep a sense of self. The age you’re diagnosed, the course of your disease, how tolerant you are of uncertainty, whether you tend to fix or flee distressing challenges in your life. All of these factors and more help shape how you live with MS. Just as no two MS disease trajectories are the same, no two approaches to defining your sense of self are the same.
Here’s how two different people with MS answer the question: “Who am I now?”
Elizabeth Jameson, 65, California
In 1991, Jameson was in a park pushing her two young sons on a swing set when she suddenly lost the ability to speak. Doctors suspected a stroke or a brain tumor until they gave her an MRI and found lesions in her brain.
Jameson was 39 and she had just been diagnosed with MS. “I felt like my life was over,” she recalls. “I had to totally redefine who I was as a wife and mother and in the work I loved. I learned that MS is the good, the bad and the ugly. It’s everything.”
Jameson’s new life with MS was complicated by frequent exacerbations. “Each one made me feel smaller and smaller psychically like I was a lesser person,” she says. Eventually, she was diagnosed with primary progressive MS and is now quadriplegic.
“In a way, it’s much easier because I don’t have the ups and downs in my disease anymore,” she says. “For me, the hardest thing about relapsing-remitting MS was you’re constantly redefining your identity after each exacerbation.”
That also includes the identity of her 34-year marriage. “My husband and I were absolute equals when we married but now I don’t always feel equal to him because I’m so disabled,” she says. “And I no longer make money so I feel less powerful sometimes in the relationship.”
Before her diagnosis Jameson was a social justice lawyer. She would advocate for children’s rights in federal court. But the exacerbation in the park left her unable to talk for a month. When her speech returned her voice was altered and she had problems remembering words.
“My job was based on my oral skills and it was too traumatic and embarrassing for me to talk in court anymore,” she says. So she made the difficult decision to quit the vocation that she felt defined her.
She still wanted to make an impact through her work. The solution presented itself in an unlikely way: Her neighbor persuaded her to take an art class. Jameson had never drawn or held a paintbrush before. The first day of class was a revelation. She adored the texture and patterns of painting. She loved the opportunity to play with colors. “One neurologist thinks my MS lesions woke up a part of my brain I had never used before,” she says.
Jameson’s MS informs her art in other ways as well. One day, when she came across a stack of her MRIs she realized she had never really looked at them because the black-and-white images seemed so frightening.
“Going into an MRI machine is profound, life-defining, traumatic. You’re never quite the same emotionally afterward,” she says. “I realized my calling is to transform brain scans-one of the symbols of MS-into images that would invoke conversations with ourselves and our medical providers. I decided I wanted to be a public-interest artist to do as an artist what I did as a lawyer.”
Jameson uses Solarplate etching to create her colorful MRI art. Her work is exhibited by nonprofits, universities, researchers, physicians and other people with MS. She’s also working on art projects designed for health care waiting rooms to encourage people with MS and their caregivers to communicate with each other.
“I want to break the silence of the waiting room which is the one area where you can be with your tribe,” Jameson says. “It’s hard to feel powerful when you can’t speak to one another in a safe space.”
Angel Muniz Jr., 38, Connecticut
Muniz was living his dream life when he was diagnosed with MS in 2002, at age 21. He traveled across the United States, competing in martial arts competitions with his father. His day job as a loan originator financed a carefree lifestyle without any fears or concerns.
For the first few years after he was diagnosed, Muniz says, he was in denial about his disease-helped by the fact that he was virtually symptom-free. He continued working and playing hard, got married, and accumulated property and investments. But in 2008, his marriage ended. Within a year, Muniz’s father died from pancreatic cancer.
And Muniz began experiencing MS exacerbations. “Things started changing dramatically with my disease,” he says. “I didn’t know at that time that stress plays a huge role in MS. I was having trouble walking, and I was getting more fatigued.”
No longer able to work, Muniz applied for Social Security Disability Insurance and moved in with his mother. “I went from being 100 percent self-sufficient to living in my mom’s basement,” he says.
And then, in 2013, Muniz says his body “shut down.” “I couldn’t walk. I couldn’t feel my legs for a whole week,” Muniz says. After the exacerbation ended, he began using crutches. “It took me a year just to feel confident enough to go out with my crutches in public,” he says. “I used to be able to go out anywhere and feel at ease meeting new people all the time but I didn’t have the confidence to do that with my crutches. Being Puerto Rican we have a lot of family and social events. I didn’t feel comfortable going for a while because of how hard it had gotten for me to walk.”
But as an athlete, Muniz has always lived by the credo that “anything the mind can see, the body can achieve.” About a year ago, he saw a video of a person in a wheelchair doing pullups. “That was my ‘aha’ moment,” he says. “I realized I can only depend on myself to make me stronger in body and mind.”
So he started a CrossFit program and began working with a personal trainer.
“Working out, going to the gym has boosted my confidence physically,” Muniz says. “But I also didn’t realize it would give me the confidence to not let my crutches affect me emotionally and mentally. That’s not to say I don’t want to cry, don’t want to scream every day. But the world’s not going to feel pity for me. I have to get up, have to move.”
That acceptance of his disease has finally allowed Muniz to think about who he wants to be for the rest of his life. “Before MS, I was so materialistic. I allowed objects to define who I was. I had everything, but I was never happy,” he says. “MS has made me so much more humble. It’s made me be the man I should be.”
Scooterjon says – I’ve had 27 years to figure out my sense of self with MS and I still get confused. Actually, I want it to be 1985-’86 again which I know will never happen. I was in good physical shape, had a good job and a lady I fell in love with. I have a really good life now with the exception being I want to earn some money. I’m hoping I can figure out how to monetize my blog.