How Hope Shaped My MS Journey
The moment my mother held me as a baby, she knew I was different; that I was destined to live a life of purpose. At birth, my parents were told I had an aortic valve defect, and at the time my life expectancy and quality of life were unclear as a child living with congenital heart disease. My parents not only supported me through every open-heart surgery, cardiologist visit and the uncertainty of living with a chronic illness, but they also encouraged me to follow my dreams. And they were with me through every terrifying moment and every accomplishment. I still remember what my father said before my first open-heart surgery, “You are a survivor. Not only are you going to overcome, but you are going to share your experience so that others will too.” Those words stuck with me.
My experience as a child with a chronic illness irrevocably impacted my life. With unwavering support from my family and community, I overcame every obstacle with strengthened faith and an emboldened spirit. I realized that my life was not by accident – I am meant to be on this earth, and I am meant to let the world know that I am here. I am meant to tell my story so that others don’t feel so alone. It is the kind of feeling that only people living with a chronic illness truly understand. My mother was right – I was born different – and that difference was important. This realization was the start of my lifelong mission before I even knew the name for it: advocacy.
I adjusted to living my life with a chronic illness. When my husband, Marvin, and I married, he knew he’d assume the title of “care partner,” which he did valiantly. We knew how to deal with heart disease; we were prepared for it. What we didn’t see coming was the curveball that a multiple sclerosis (MS) diagnosis threw at us. I woke up one day and the left side of my face was numb, which lasted for two days. Intuitively, I knew something was wrong. I was familiar with my body; I had to be. As I recounted the details to my mother, she reminded me that I needed to trust my gut instinct – I had to get it checked out. What eventually followed was life-changing: an MS diagnosis. I didn’t know anything about MS. I barely knew anyone who had been diagnosed with it. That fear of the unknown only compounded when I started doing my own research and didn’t see anyone who looked like me. Historically, MS has been thought to be a white woman’s disease, and that is all I saw in my research. I couldn’t find much information about MS within the Black community, and it was frightening and devastating to be diagnosed with this disease that I knew next to nothing about.
As tough as that MS diagnosis was, in a way, it brought my life full circle. It reminded me that as long as I am still here, as long as I can make it into the next moment or the next day, I’m living with purpose. After processing my diagnosis, I vowed to fight MS in the exact same manner as I had fought my heart disease – with faith, hope and intention. Using my life and my story not just for me, but for someone else to learn from and be inspired by.
I have been a patient advocate for longer than I can remember, but one of my proudest moments in advocacy was when I took part in the documentary with the National MS Society, “Living Well With MS: A Guide for Black Americans.” As a Black woman with MS, I know just how difficult it can be to live with a disease where you don’t see yourself in the patient experience. That lack of representation can make you feel like you’re not included or relevant, or that the information doesn’t apply to you. The documentary created an opportunity for me to be a part of the change in how we think about MS and hopefully make an MS diagnosis less frightening for members of my community.
Everyone’s story matters and diverse perspectives are so important, especially in MS, a disease that affects each person differently. One voice sharing a story can change the trajectory of someone’s entire patient experience because no one understands better than those who have lived through it. I hope that by telling my story I can inspire others to do the same, so that when patients are newly diagnosed, the information they find looks different than it did for me. For people recently diagnosed with MS, finding resources like the “Living Well with MS: A Guide for Black Americans” documentary and MoretoMS.com can help make them feel included, empowered and hopeful.
Hope is so powerful – it’s what taught me to never give up. I’ve lived my entire life hoping that I can make a difference because I live every day with a purpose, and you never know when something may change. The power of hope allows you to follow your dreams and embrace all of who you are. To never give up. You are your entire experience – the trials and the triumphs, the joys and the pains, the highs and the lows. Even on days when I’m struggling, hope is what keeps me going.