After months of preparation with storytelling experts, three ordinary Americans with multiple sclerosis (MS) took the stage in New York late last year to share their MS journeys.
The three joined TV personality Montel Williams at an event inaugurating My MS: Second Act, a joint effort co-sponsored by the Multiple Sclerosis Society of America (MSAA), Novartis, and The Moth, a New York-based nonprofit organization.
“Storytelling is the stuff of life, and there is so much power in not only telling your own story, but in listening to other people’s stories,” said Amanda Montague, MSAA’s vice-president of education and healthcare relations.
Williams said both Novartis and MSAA have “worked as hard as they can” — along with The Moth — to help MS patients tell their own personal stories.
“In doing so, it’s important that you share those stories with as many people as you possibly can, because hope should be the mantra of the day,” he said. “Yes, this disease is going to progress, and 80% of people with RRMS [relapsing-remitting MS] will end up with SPMS [secondary progressive MS]. It’s going to happen, but that doesn’t mean our SPMS will be the exact same as someone else’s,” he said.
“We still have abilities, even if that walker doesn’t work anymore — even if it’s just one finger,” Williams said. “Remember, as much as medication and doctors and treatments can help, I’m a firm believer that the love you get from those around you is just as powerful.”
Leverne Marsh, vice-president and head of the U.S. neuroscience franchise at Novartis, added: “We all have a role to play. For us at Novartis, in partnership with MSAA, we must do our part to elevate patients’ stories as frequently as we need to, and as frequently as the opportunity will allow. Many MS patients feel socially isolated, that they don’t belong anywhere, that nobody is listening. But there’s incredible optimism and resilience here.”
Karen’s story: Empowerment
In 1996, Karen B. was a happily married woman with a full-time job and an inquisitive 3-year-old daughter named Amy. Then, one day, she rubbed her eyes and it hurt.
“Within 48 hours, I was completely blind in one eye. I was terrified,” Karen said. “I saw doctors, had tests done, and then my vision returned and life went back to normal. I ignored the fact that one of the doctors had said it was either a brain tumor or MS — and the fact that one of my sisters had MS.”
Eventually, Karen received a formal diagnosis of RRMS, but downplayed the diagnosis. In 2001, she started on a disease-modifying therapy, and six years later gave birth to her second daughter, Maggie.
“One summer, we went to the Minnesota State Fair. It was crowded, loud and hot — and it smelled like deep-fried something on a stick. To experience any of it, you have to be able to walk,” she said. “But as we walked, my legs felt like they were made of concrete. We got a wheelchair and I made jokes, so the girls wouldn’t see how upset I was.”
That day, as crowded as it was, Karen remembered, “I felt very alone — almost invisible, and it got very quiet, and I started to cry. At that moment, I realized that all the jokes in the world weren’t going to change the fact that I had this disease.”
As her daughters got older, they became more independent and were able to help Karen, whose MS had advanced rapidly.
Even so, she said, “I wanted to set a good example, but wasn’t sure how. I myself didn’t have a degree, so I started taking college courses.”
One day, Karen wrote a letter to her state representative asking him to support a bill on MS donations. She mailed the letter and forgot all about it — but the recipient didn’t.
“Shortly after I finished my class, I got a call at work asking me to testify about the MS bill at the state capital,” she said. “The next morning, I found myself at a table in front of the Congressional Tax Committee. I had no idea what I was going to say, so I tried to stress the importance of supporting MS patients. Later I was told that I’d be honored at the MS Gala. I never thought that writing a letter would bring about such an impact.”
Since then, Karen’s condition has deteriorated. She uses a walker all the time now, and she’s divorced. But, she said, “I haven’t stopped trying to make a difference.”
Mike’s story: Community impact
Mike O. was very good at what he did. A hard-driving New Jersey salesman with his own business, he was doing just fine — until one morning around 9 a.m., when he pulled off I-287 in agonizing pain.
“I had been experiencing pain and fatigue for years, but I loved my job. Plus I had a wife and three kids, and a giant mortgage to pay off,” he recalled. “I made it to my sales appointment, but my customer wanted to call 911. When I got home that night, I talked to my wife, Michelle, about what had happened.”
The sharp pain went away, but then it happened again, and another time. Mike ignored his symptoms, insisting to himself, “I don’t go to the doctor. I just want to work and provide for my family.” But then he could no longer ignore the warning signs.
“Finally one morning, my wife said we had to go to the emergency room, that I couldn’t continue like this,” he recalled. “I remember the hospital doctor coming in and saying something that blew my mind: ‘The ER is for sick people. If you’re not feeling well, go to your doctor. I was completely embarrassed and frustrated. This was the start of my journey of misdiagnosis.”
“Cognitive fog and falls continued. My sales numbers were dropping and my house was going into foreclosure,” he said. “After finally totaling my truck on the Garden State Parkway one night, I found my way to the correct doctors.”
Following a spinal tap and magnetic resonance imaging (MRI), Mike was correctly diagnosed with RRMS that was already transitioning to SPMS.
“This disease contradicts everything I was ever taught about how to succeed in life: work hard and have lots of energy,” he said. “I finally had to go on Social Security disability. When you’re diagnosed with MS, everyone wants you to talk with someone else who has MS. So I went to a support group of MS patients who could laugh about their disease. I hadn’t laughed in a long time.”
Mike ended his talk with a new job title for himself: “I am still a super-hero dad. I’m just a super-hero dad with a cane.”
Faith’s story: Independence
When Faith A. was 16, she went to the 1969 Woodstock concert without permission. Exactly three decades later, she was diagnosed with RRMS.
“But for about 10 years before that, I went from doctor to doctor, and was told, ‘It’s all in your head’ or that it was a female issue. I was depressed, because I dealt with so many incompetent doctors,” she said. “Then I finally found a doctor who only deals with MS patients, and for the first time I had the answers I needed. She’s worked with me ever since.”
Faith said she was never worried that she had MS.
“It was a relief,” she recalled. “I could finally put a name to what was going on. No one believed me, but I never gave up.”
For years, Faith had worked for a subprime auto loan agency that garnished the wages of people who didn’t pay their bills on time.
“In August 2014, it was time for our yearly review, and it wasn’t my best year,” she said. “I was great at what I did, but MS was finally kicking my butt. One day, at our normal monthly meeting, an HR person came in and told our whole department we had 10 minutes to clear our desks. I was stunned and wanted to die. I had given my whole life to this company.”
Faith had just purchased a brand-new condo, and suddenly had no idea how she was going to pay for it.
“As my symptoms got worse, my daughters urged me to take it easy,” she said. “I don’t want help and I like to be independent. I’ve always been an ‘I’ person; now I have to be a ‘we’ person. I have to ask for help.”
Faith now relies on her monthly disability check to pay her bills, “my daughter to help me, my son to keep me laughing, and my doctor to care for me.” She says she knows that it’s in her own best interest to “loosen the reins a little” and get out of the way.
“I now have SMPS, brain atrophy, cognitive issues, tremors, and spinal degeneration, and I’ve fallen four times this year,” she said, adding that she’s also had cancer three times and shingles seven times. “One of those times I fell, I was on my way to 7-Eleven to buy a Slurpee. After I fell, I made sure I got that Slurpee. I wasn’t leaving without it.”
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