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    Skip to main content

    LIFE WITH

    LIFE WITH MS


    LIFE WITH

    LIFE WITH MS

    Leaving a Lasting Legacy

    Reviewed by Poonam Sachdev on February 18, 2022

    Video Transcript

    [MUSIC PLAYING]

    FREDERICK JOSEPH: I remember I was playing football with some of my friends. We'd Turkey Bowl every year. I'm the person who I'm used to using my body in a certain way. I'm trying to move my leg, and I'm unable to get my body to do the thing that I'm telling it to do. There was this feeling that my leg almost was dying, like it was no longer a part of my body, right? Like my leg wasn't mine. Next morning, I wake up. My hands are tingling, and I can't really grab things. My head's foggy and, like, I'm not feeling well.

    [MUSIC PLAYING]

    I'm from Yonkers, New York, and I was raised by my mother and grandmother. And it just kind of felt you will never escape to a certain point, but I did. I went to school for political science and creative writing. I'm like, I'm going to use every ounce of influence, education, to help change the world for black people.

    When I was given a diagnosis, immediately, I thought I was done. I thought it was over. Everything in my mind is just like, I feel smaller and smaller. You stacked the cards against me already. Just like where I grew up, what I've had to deal with, and I made it here. I got here in spite of, and now you just give me this period to end my sentence, right?

    I went to a very, very deep depression-- drinking, sleeping, staying in my room, staying away from people. My mom was pregnant, but at the time, my mom and I weren't talking because I felt like in this weird way, it was almost like she was going to replace me. I was on my way out, and someone's on their way in.

    I had found that I had MS six months prior, and I probably hadn't smiled in six months-- just deeper and deeper into that hole. And then my brother was born. I get to the hospital, and I walk up. And I look in the bassinet, and there's my brother. And the way he looked at me, and it was like his little hand grabbed my finger and was like, I got you. I need you to get it together. We got this.

    And so I made a commitment to him. I made a commitment to my family, and I made a commitment to myself. For me, my brother was a spark. He was the inspiration. The work was going out, researching more, navigating, how could I best live with this? Because frankly, I wasn't going to be the person I was before. And I had to first be OK with that.

    The second step was, what is different and what is manageable? So I spent time researching diets, workout regimens, doctors, best things to do in your home to proof it as much as possible from flare-ups if you're going to fall. My dream as a kid

    was to make some type of change. I had that instilled in me from my mother, my grandmother, my community. Help people, right? Like these hands were made to do good work. But what happens when you can no longer use your hands?

    It's like, well, I want to help kids. I want to bring more joy into people's lives. So when the Black Panther was coming out, I was like, well, I want kids to see this. So I put together a marketing campaign, and that campaign ended up becoming the largest GoFundMe in history. So we ended up taking over 100,000 kids to see Black Panther for free. We raised over $1 million in two weeks.

    My dreams have changed because they're bigger now. Even after MS, they're bigger than I could have ever imagined. I didn't think about a legacy in the sense of global community. I thought about a legacy in the sense of local community, immediate family. Now I want to change the world.

    [MUSIC PLAYING]

    It felt like people were really feeling sorry for me, like I was a victim. And that wasn't the story that I wanted to tell."

    - Ardra Shephard

    EXPLORE MORE

    10 Ways to Stay Sharp

    Cut through your "brain fog" and stay on task with a tried-and-true routine. Simple aids like calendars and mind games can help with memory and focus.

    My Daily Life With Relapsing-Remitting MS

    Life on the Go With Mobility Aids

    Mix and Mingle: MS and Your Social Life

    Easy Changes to Ease Your Symptoms

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