Browsing Tag

Multiple Sclerosis

Multiple Sclerosis & HIV: An Unlikely Connection

Causes, KB's Journey

This week, I’ve been thinking about my mother a lot. Mainly, I’ve been thinking about how proud she would be to see how far I’ve come with my career, my personal life, and with Red Pump. We started Red Pump a year after she passed away and I can’t help but to wish that she was here today to gush over my photo in Essence or to reassure me when I’m too exhausted from juggling so many hats.

For me, my mother was the prototype for fabulous giving. As a teen, she volunteered with different groups and also taught a Sunday school class at her church. When she moved to Chicago, she continued her season of service and found groups to devote her time and attention. I’ll never forget how she would take us with her on Monday nights when she tutored foster children at the Harold Washington Library. Her commitment to that role landed her a Volunteer of the Year award from Volunteers of America. I still display that award proudly in my home as a reminder of how far doing good can take you.

Living with multiple sclerosis inserted many challenges in her (and our) day-to-day life. I’ve shared before about my experience as a youth caregiver but that is only part of the memories. For every challenge, there were plenty of happy moments. I just wish that her MS wouldn’t have gotten in the way of us creating so many more.

 

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This week is MS Awareness Week, a time where we are asked to take action to help others learn more about MS and what they can do to make a difference. One of the asks of the National Multiple Sclerosis Society is that we spend this time “creating connections stronger than the ones that MS destroys.” For me, the connection that I have to health education and activism is far greater than anything that this disease could EVER destroy.

The fight against multiple sclerosis was the first cause that I’ve ever rallied behind. In high school, I volunteered at the annual MS Walk, did multiple presentations on MS, and racked up service hours after school in their office. I continued that commitment in college and in the years right after my graduation. At this point in my life, I don’t have as much time to physically devote to MS and it would seem that HIV has “stolen the show” so to speak. That’s not the case. I will never forget (or forgive) how multiple sclerosis has impacted my life, or the role that the disease played in my mother’s passing.

Without a life impacted by multiple sclerosis, I don’t know if I would be as passionate about causes or service. I don’t know if I would have the tools or desire to be an advocate. I don’t know if I would have ever started The Red Pump Project. So, as I recognize MS Awareness Week, I will make a donation to my local chapter of the MS Society, but I will also raise my voice louder for anyone who needs a champion. From MS to HIV, it is my sincere prayer that my efforts make an impact.

More importantly, I pray that I continue to make my do-gooder mother turned angel proud.

To learn more about multiple sclerosis, a debilitating neurological condition, check out this helpful section on the National MS Society’s webpage.

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Kid Dangerous Wants to “Erase MS Now”

Multiple Sclerosis, Shop for A Cause

I hate multiple sclerosis so naturally I love this tank ($30) from Kid Dangerous Grime Couture. The brand designed the shirt to support the Nancy Davis Foundation for Multiple Sclerosis and 100% of the proceeds will go to MS research.

Don’t worry, guys…There’s a tee ($35) for you as well.

I’m doing a 40-day spending fast with my church so I can’t buy this shirt for another six weeks, but trust me…I will be ordered as soon as I can!

-kb

A Tale of Two Causes

HIV/AIDS, KB's Journey, Multiple Sclerosis


All of my life, my #1 cause has been multiple sclerosis. I watched my mother fight the disease for almost 30 years, and learned to hate every single thing that this disease is capable of doing to an individual and their families. I volunteered for the MS Society, learned about the disease and took every opportunity to educate others about MS.

When I started The Red Pump Project in 2009, I picked up another flag to carry. This time, my fight centered around educating my peers and others about the impact of HIV/AIDS on women and girls. Being in this position has been a blessing and an eye-opening experience but I have a confession to make…

*whispers* I feel guilty about spending less time championing the fight against multiple sclerosis.

I hope that doesn’t sound crazy to you because I almost felt crazy typing it. After all, we can all stand for more than one cause and support more than one organization. But, for me…with my personal story, I feel like I’ve turned my back on something that was once all I could think about. When I promote the MS Society or encourage people to support the organization, I feel this tug like, “Should I be using my connections and networks to promote Red Pump instead?”

So, for now, I continue to be torn…Torn between a disease that strikes at random and a disease that can be prevented. One disease that affects all Americans and one that is disproportionately affecting LGBT and minority communities. I shouldn’t feel this way but I do.

I used to feel that my decreased involvement in the fight against MS meant that I was forgetting about my mother and her life. But, then I remember that she’s probably very proud of my work with Red Pump. I don’t know…I’m sure that I will get over this hump soon. The anniversary of her passing is this month so maybe that’s a factor in this little guilt-fest. Yeah, I’m going to chalk it up to that…but I’m still going to re-up my involvement with the Society in the meantime.

I think that should do it.

-kb

Not Until There’s a Cure for MS

KB's Journey, Multiple Sclerosis

Today is the last day of MS Awareness Week. As many of you know, multiple sclerosis is an issue close to my heart because my mother fought the disease for almost 30 years before passing away in April 2008. The purpose of MS Awareness Week is to educate the public abut the impact of this debilitating disease and to encourage all of us to take a stand against MS by making a donation, volunteering our time, and/or sharing our experiences.

Watching my mother battle MS was the most difficult experience of my life. I watched her go from a cane to a walker to a wheelchair to being bedridden during the last 31 months of her life. There were many times when I had to leave the room so that she wouldn’t see or hear me crying when she told me that she could no longer read the side of a cake mix box. Watching your “she-ro” slowly lose control of her body took my mind, heart, and faith in many different directions.

There was the guilt. One time I came home from college and realized that I left my keys in Chambana. As I knocked on the door, I remember thinking “Is she sleeping? What’s going on?” When she opened the door, I looked down and saw her on the ground. Turns out that she’d pulled herself across the floor from her bedroom to the front door because she had to let her daughter in the house. GUILT. I cried silently for hours in my pillow because I felt so terrible.

Or there was the time when I came home to find out that my mother had been sitting on the floor for over a day because she’d fallen out of her wheelchair while reaching for something and her caregiver had the day off. I mean, as a young person living the life in college, I began questioning myself as a daughter. How can I be away at school living it up and my mother was at home dealing with these things? I thought about transferring to the Chicago campus to be closer to her, but she refused. “No. You stay down there and finish… in Champaign.”

That selflessness and sacrifice is what I think of every single day when I remember my mother and when I think of every parent battling multiple sclerosis. It takes an immense amount of sacrifice to turn your children loose into the world when you know that you could use their assistance at home.

Throughout her fight, my mother remained selfless and giving. Smiling when she preferred to cry. Encouraging us when her hope was gone. Even in her passing, there was an element of giving. She gave my sister and I the “freedom” to pursue our dreams. She empowered us to take her legacy and story and use it to change our lives and the world.

When I volunteer at the MS Society, I love meeting parents with MS who have young children. I love looking at them and telling them that although it will be difficult, it’s not impossible. My mother did it. They will do it. And, their children will love them even more for it. After all, those of us affected by multiple sclerosis are warriors. We fight every single day as this disease continues on its destructive path. But, we will never give up. Not now…Not never…Not until there’s a cure.

29 Gifts and My Personal Challenge

KB's Journey, Living & Giving

book-cover

A couple of weeks ago, I was surfing MSNBC.com and came across a clip of Cami Walker on The Today Show. Cami was on the show to talk about how the recommendation of an African healer led her to give 29 gifts in 29 days as a way to cope with her recent diagnosis of multiple sclerosis. Let me get this straight. A young woman living with multiple sclerosis was going to talk about the power of giving? I had to watch…and in the process, I had to pray that I wouldn’t burst into tears particularly because I work in a room with four other people.

Listening to Cami, I heard her tell a story that I’m all to familiar with…Young women just beginning their path into adulthood, marriage, or parenthood suddenly find themselves trying to understand and live with a diagnosis of multiple sclerosis. It was my mother’s story. Cami was diagnosed one month after her wedding day at the age of 33. As she navigated the difficult physical and emotional changes, she received some advice from a friend of hers who was an African healing woman. Her friend told her to give 29 gifts in 29 days. The reason why? “By giving, you are focusing on what you have to offer others, inviting more abundance into your life.” *church hand*

As Cami gave, she noticed that the positivity and selflessness that she gave to the world was reciprocated in ways that she couldn’t have imagined. At the end of her interview, I was intrigued, motivated, and a little teary-eyed. A colleague of mine recently asked me why I was such a good person. I told her that my giving spirit is motivated by my mother. In the midst of her health battles, she always found room to give to others, to care, and to share. For that, I believe that God kept a special eye on her and her family. And, that is the kind of grace that I want to have over my life.

Cami’s story hit home for me in the realest way, so I decided that I needed to read her book 29 Gifts: How A Month of Giving Can Change Your Life AND take on my own 29-day giving challenge!

If you want to follow along with me, be sure to check out my page on the 29-Day Giving Challenge Ning site, as well as Twitter and here. I will tag any tweet related to my challenge with the hashtag #29days. I hope that you’ll stick with me as I take this on head first and walk into the new year with a new mindset.

Please check out 29Gifts.org to learn more and you can watch Cami’s Today show appearance below.

Can’t Tell a Story Without a Voice

KB's Journey

finding my voice

Confession time.

While I am a stellar volunteer who will give all of her time, I’ve never been comfortable fundraising for those causes. I’m talking about making the ask of people to separate with their hard-earned money and giving it to an organization that they may or may not know about.

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