I am a young, Black male. And, yes I have MS. I am the real face of MS.
If you see somebody that’s walking, looking young, looking healthy, doing whatever…that’s also folks with MS. But when you look up MS online, all you see is people in wheelchairs, or you see people with a cane, or you see people with vision problems. All you see is the debilitation. As someone with MS, it’s seeing that scares me. I don’t want to end up like that.
Some people out there are jogging; for me, at least I can get out there and ride my bike. I wish the media showed that. If I meet someone young and Black in their 20s doing something despite their MS, I think “Why not me too?”
But honestly, it’s rare that I meet people who look like me and have MS or even know others with MS. So, my experience has been very lonely. A lot of black men don’t come out and say “Well, hey I have MS.” or “I’m a Black man that has MS.” I think it’s because we are put in this “superman” role where we aren’t supposed to be vulnerable or fragile. Even when I do occasionally come across Black men with MS in virtual support groups, they’re older. Young Black men with MS, they don’t really go to the events, the support groups, or the dinners. So, I find myself asking “who is my support around here?”
At the time, there were no Black males in MS commercials at all. Over the years, I have had conversations with companies that produce medicine for MS. They asked, “What can we do to make your experience more comfortable?” I was like, “Well you need to put a Black male in the commercial. There is no one who looks like me there.”
When I’m not represented, it makes it feel like there is no one else out there.
And others are feeling it too. Actually, I recently met another young, Black male who joined my support group. He came to me and was like, “Oh you have MS? I didn’t really think anyone else like us had it.” And it’s crazy, because he’s just a couple of years younger than I am, so I really know what he’s going through… that feeling of being alone in your diagnosis, without other people who get it. Asking questions like, “Hey, will I end up with a wife? Will I end up with children? Am I going to be able to play with and chase after my children?” These are unspoken things – no one’s saying this for males, for Black males especially.
I feel that as a Black man, I’m not supposed to cope with MS, I’m supposed to be a “superhero.” It feels like my healing time always has to be quick. Quicker than most, and then I have to immediately go do X, Y and Z.
Sometimes people forget: if you watch superhero movies, Spider-Man gets knocked down, Black Panther gets knocked down, Wonder Woman gets knocked down, Batman gets knocked down, Catwoman gets knocked down. All of these people get knocked down, but what makes them a superhero is they’re getting back up. If anything, I think that’s what people fail to realize.
I’ve been trying to keep it in mind. I can get knocked down and still be a superhero. It takes a while, and there are different stages of acceptance, denial, this that and the other thing…Honestly, I still have a ways to go. I don’t think I’ve fully accepted the responsibilities of having MS; it’s still a work in progress.
A lot of it is because there are many different facets that come with MS. The slump or symptoms I experience one time may not be the same slump I have the next time. I have had bumps before, but it’s kind of one of those things where you don’t necessarily know it’s going to happen, or what it’s going to be like. In my most recent slump last fall with some things I experienced I thought, “Ok, I knew that was going to happen.” But I also had a lot of symptoms that I didn’t know were going to come up or last so long. They felt really noticeable.” People were telling me that I didn’t sound the same or do certain things the same. That was, well, interesting. So, I began to learn how to embrace it a lot more. And just let it happen. Because, before I had MS, I didn’t let anything happen. Like I said, my default is to be in superhero mode.
It’s one of those things that before I had MS I didn’t want other peoples’ help. But now, it’s different. My mom often jokes, “Well, at least it’s going to slow you down a little bit.” That was and is one of the good sides of MS. I intentionally think. I intentionally focus on me. I intentionally take care of myself. I intentionally have those pity parties and those upbeat parties. And it’s sometimes just all about myself.
Honestly, it wasn’t until First Descents that I realized all of this about myself and how my MS affected me.
I attended a kayaking program in Montana in 2018. I was out there on the water. And my boat started turning. I was like NO stay straight! But it just flipped me around. It wasn’t a bad spin, or a scary one, but it flipped me right around! I tried to resist, and I just couldn’t stay straight.
But, when I got turned around I was like “Dang. This view is better than what’s in front of me.” So, it made me appreciate everything that’s around me. And light came shining through the mountain tops around me. It was so beautiful.
I realized, “you have to be the light.” I’ve always been the fire. I was moving too quickly, burning things down along the way. My mindset was like “Let’s get this done; you have this job to do, let’s do it.” But when I became the light, I learned to enjoy the process of getting it done and asking myself “how do you feel about it?” When I was burning things down I was concerned about the end result, not the process. But MS and that FD trip, they reminded me to enjoy life. To slow down and enjoy being the light that is shining through the mountain and illuminating the views. I don’t have to be the fire.
Through First Descents I began to think, “you’re here to heal yourself through loving what’s around you.”
The experience changed my life. Together, we can collectively heal from one-another and from what’s around us to learn to enjoy everything that’s ahead of us.
Now, I am the light.
Additional thanks to our partners at the National MS Society and CanDo MS for their instrumental support in sharing our MS Programs with young adults who can benefit from the healing power of adventure.
2022 is the year to start #OutLivingIt. Join us at one of our epic program locations across the country and experience the healing power of adventure. Inquire at firstdescents.org/joinus to learn more and stay up to date on all the programs we have to offer this year.
2 thoughts on “Becoming the Light”
Akeem, I do not have the words to say what is in my heart or the thoughts going through my head. You have truly spoken profoundly. I have always known that you were special but I am in awe of your insight and compassion for others. May God always speak through you. I love you Godmother Shirley
My best friend… when you first told me that you had MS I was speechless but mainly because I knew nothing of the disease. So I educated myself and begin to weep off of the images and information that swarmed from the internet. I started to ask myself how much time? How much time did I have with my best friend and what all could we do with the time we had? I have walked alongside you in this journey. That day you told me until now seems like years ago. I can truly say that “You are the light!” You are the new Face of MS and because of how you’ve approached this disease; I no longer ask how much time? I now say, “Can you, May you, and Will you?” Can you tell me your availability for this he weekend because I cannot wait to see you and hang out? May you do me the honor marrying my husband and I? Lastly, I cannot wait to ask you, “Will you be the Godparent of my children?” You have shedding light, live and love on MS and I cannot wait to see what this journey continues to bring us!