An MS Diagnosis At 19 Pushed This Activist To Make Her Mark On Politics

Jess Moore Matthews was walking home from a movie in 2009 when she first felt an unusual sensation in her fingers and toes. Even though she kept shaking them, they wouldn’t wake up. She chalked it up to sensitive skin. With urging from her parents, she went to the doctor the next day, who promptly sent her to a neurologist. After an MRI and spinal tap, she was diagnosed with multiple sclerosis.

All of this happened in the course of a week in the summer before her sophomore year at Hampton University. Initially, she was prescribed medication that caused depression, and she found comfort in watching reruns of Law & Order: SVU in her dark dorm room.

When the tingling came back around Christmas time, she was given a more effective medicine. Her mindset began to change. Always an overachiever and leader, she says she decided to “grab life by the horns” by interning at Google, learning to salsa dance, and even skydiving.

“Having to grapple with your mortality earlier in life can cause a radical shift in your worldview,” she says, “because you’re viewing things more as opportunities than challenges.”

Since then, Matthews, 34, has continued to embrace those opportunities to fight for voters’ rights and work on political campaigns, including presidential runs by Bill de Blasio and Elizabeth Warren, and hyper-local grassroots movements.

“When I was diagnosed with MS at 19, I never thought I’d have this much freedom in my career and this much passion to do what drives me.”

When COVID hit, Matthews knew she didn’t want to return to an office, where she’d feel unsafe. So, she and her family relocated from New York City to Raleigh, North Carolina, and she opened Backbone Digital Leaders, an agency “conceived by unbought and unbossed Black women” with a mission to “spearhead a digital revolution at the ballot box” through digital activism. As she puts it, digital accessibility means ensuring that everyone can navigate and interact online, regardless of ability.

Her first partnership was with Michelle Obama’s When We All Vote campaign, providing strategy, graphics, videos, and messaging about local voting deadlines and requirements across the country.

“When folks ask me why I care so much about digital accessibility, I feel more freedom to talk about my MS and my experience with disability,” she says. “It has become a bigger part of my identity publicly in the last few years, which is freeing and scary sometimes.”

She didn’t always imagine this path for herself. “When I was diagnosed with MS at 19, I never thought I’d have this much freedom in my career and this much passion to do what drives me.”

Below, Matthews talks to Bustle about being an entrepreneur, what motivates her, and life with MS.

As the Chief Good Troublemaker at Backbone, what do you do?

Obviously inspired by the late John Lewis, my job description would be evangelizing the importance of digital accessibility, and making sure that this equity-, justice-focused idea is embedded in every single aspect of what we do.

You talk about working toward a “revolution at the ballot box.” What does that look like to you?

It’s about reaching all the people we need to reach and helping them understand that their voices matter. It’s not just the folks who make it to the ballot every single election; it’s about the folks who feel like they’ve never been spoken to directly. That, to me, is revolutionary — to get back to basics and make sure you are speaking to every single person in the community. We do this by prioritizing those most often ignored or disregarded in our democracy.

I would like to see Black voters recognize our power to shift policy and narratives within the country. You have to have a backbone to fight for a country that may not have always appreciated you and your contributions.

Just as curb cuts benefitted everyone moving from the sidewalk onto the street, we believe if we can successfully reach and support these communities, every community will be reached and supported.

What’s one Backbone project that you’re particularly proud of?

Last year, we traveled to Oakland, California, to train a multilingual group of community organizers in creating accessible TikToks to push for housing justice across the state.

What’s one win you’d like to see happen this year?

I would like to see Black voters recognize our power to shift policy and narratives within the country. You have to have a backbone to fight for a country that may not have always appreciated you and your contributions.

It’s about understanding that our ancestors fought for this country in every war; they contributed many inventions to this country and the world; they contributed to the culture, music, and art. It’s about understanding the power we have as a voting bloc and using that to make sure our desires for the next few years are heard and appreciated. That’s when things get revolutionary.

What led you to embrace life rather than hide away at the beginning of your MS journey?

There’s this movie, Last Holiday with Queen Latifah, where she gets a life-changing diagnosis and is told she has two weeks to live. After living a conservative, safe life, she decides to take out her life savings and go to this ski resort in the Czech Republic. And then she lives her best life. It brings me so much joy. I wrote a graduate school thesis on this movie. I hope I get to tell her that one day.

How do you balance your career with your well-being?

I’m a big bubble bath fan. Every day before I get my kids from carpool, I have to have at least 30 minutes to myself to soak and hopefully get rid of the soreness that seems to have come in my mid-30s. I’m very intentional about therapy. I read and listen to music. If I’m able to commit to these things every week, I’m a better person for my husband, my kids, and the people I work with.

What keeps you motivated?

My faith. I’m a Sunday school teacher. I am not only praying often but teaching, which has helped with my anxiety.

What also keeps me motivated is wanting to leave a legacy for my kids and make them proud. I love that they’ll be able to tell people that their mom had MS but also ran this incredible organization that shifted the nation’s politics and made a difference, and they got to have a front-row seat.

This interview has been edited and condensed for clarity.