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Music and Community: How I Fight MS

Written by Kelly Crumrin
Posted on March 25, 2024

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Transcript

00:00:00:00 - 00:00:41:14
Dani
[singing] “Be with me.” (guitar strumming) [singing] “Oh show me your face.” When I first found out I had multiple sclerosis, I think the genre that really touched me was music from the seventies and kind of made me think back to, like my childhood, kind of really made me feel more resilient. [guitar strumming] [singing] “All that I need.” Right before I found out I had multiple sclerosis, I got hired as a program music coordinator here at a nonprofit youth center.

00:00:41:16 - 00:01:05:02
Dani
The beginning of my day is usually administrative with like meetings and planning and things like that, so there's kind of a slow start, and then it's a lot all at once. I have music programs and I have an artist residency program, so there's always some kind of music going on, kids playing instruments or learning to make beats, or learning to write songs.

00:01:05:08 - 00:01:35:23
Dani
It's really fun. By six o’clock, I’m typically really tired. Throughout the workday, if symptoms come up, I typically tell my colleagues that I'm not feeling great, and if there's something that can be pushed to the next day or I need to go home, then I definitely feel like I have that agency to be more open. This is the space where they really make it easy to check in and think about how you feel and what you need.

00:01:36:01 - 00:02:04:15
Dani
I think for me it's knowing how to say something because even if you have a job that makes accommodations, the hard part is asking for it, right? It's been a vital thing for me to have a support system, my family, my work colleagues. I don't know if it would be accomplishable if I didn't have them. I think it's okay to ask for help versus trying to do everything yourself, or not burden people because a lot of times people want to help

00:02:04:17 - 00:02:16:13
Dani
If you allow them to. My name is Dani Darling, and I live with relapsing remitting multiple sclerosis.

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“One thing I’ve realized since I got MS is that it’s OK to ask for help versus trying to do everything yourself. A lot of times people want to help if you allow them to.” Dani Darling, a MyMSTeam member, talked to us about the importance of support during a recent interview.

Dani is a singer, guitarist, songwriter, and producer who performs with her indie soul band, Dani Darling. She found out she had MS during the summer of 2021. She had recently released her Detroit Music Award-nominated EP, “The Future,” and then experienced MS symptoms while performing onstage.

Dani is also an identical triplet, a youth mentor, and a single mother. She emphasized the role of community support since she’s been living with MS. “Community has been super important for me with MS,” she explained. “I’m a triplet, so I was born in a group. I’m an extrovert. It’s been a vital thing for me to have a support system, my family, my work colleagues, and I wouldn’t have been able to accomplish anything if I didn’t have them.”

Since Dani’s a musician, it’s not surprising that she looks to music for inspiration: “When I first found out I had multiple sclerosis, music from the ’70s really touched me. Music from that era was just very uplifting. Bill Withers’ ‘Lean on Me.’ It made me think back to my childhood, to a place where I had fewer cares.” It’s also worth noting that for most people, childhood is a time when they felt more comfortable asking for help and support.

Dani works as the music program coordinator at a youth center. “On a typical day, it’s kind of a madhouse,” she said. “Throughout the workday, if symptoms come up, I try to tell my colleagues that I’m not feeling great. Even if you have a job that makes accommodations, the hard part is asking for it. This is a space where they really make it easy to think about how you feel and what you need. Sometimes I need to check in with myself and have the boundaries to say, ‘No, let’s put this off till tomorrow.’”

Read more about workplace accommodations for people with MS.

Dani recognizes that speaking up isn’t always easy, but it’s often the first step in getting the help and support you need. “If you’re feeling really alone, that’s a very difficult thing to overcome in addition to multiple sclerosis,” she said. “If you don’t have people you can rely on, I think sometimes it’s as easy as being more open about what you need and what you feel.

“If someone is going through something like MS, having a support system is always worth it,” Dani continued. “Being able to say how you feel, say what you need, can sometimes be hard. But it’s about giving the people that care for you a chance to be there for you.”

Learn about six resources for managing life with MS.

Talk With Others Who Understand

On MyMSTeam, the social network for people with multiple sclerosis and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with MS.

Since you’ve been living with MS, have you had to learn how to ask for support? What are some ways you do that? Share your experience in the comments below, or start a conversation by posting on your Activities page.

More Videos

Dani had just started a new job when she was diagnosed with multiple sclerosis: “I had to advocate for myself for my treatment because I had just started working. So even though my doctors had recommended a certain infusion, my insurance denied it at first.”

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In this video, Dani explains that one of the most important lessons she’s learned since being diagnosed with MS is how to listen to her body: “The times when I find myself not listening to my body, then it starts to speak louder to me.”

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Posted on March 25, 2024
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Kelly Crumrin is a senior editor at MyHealthTeam and leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.

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