I’ve tried many times to write about my story with multiple sclerosis, but every time, I can’t do it. Quite honestly, I don’t know what to say. I don’t know where to begin—MS is such an individual illness, where no two cases are exactly the same, so what works for me may not work for anyone else.
But maybe that’s just been my excuse. The thing is, it’s not easy to talk about. Even when I think I’m fine, when someone asks about it, I often realize I’m not (tears and awkwardness ensue).
While I’m doing great now two and a half years post-diagnosis, it was a different story three years ago. It’s not easy to revisit the scary weeks where I struggled to walk and had no idea why. Or the cold December day when I was diagnosed; I always think to the moment after my appointment, as I sat in the hotel room across from the Mayo Clinic, staring in a mirror (very cliché-like), thinking about my future. The fear. The sadness. The uncertainty.
But I want to talk about it now—I want to share something of value that could potentially lift up someone else struggling. A theme for the MS awareness movement is “stronger than MS,” and I have no problem thinking about what makes me stronger.
Not what, but who.
Because when I think back to that cold December day, I also think about my husband, who drove us to Rochester through a blizzard on his birthday because we couldn’t go one more day without answers. He’s been by my side every day since, on good days and bad, and in sickness and in health.
I think about my parents, driving six hours to take care of my little ones—one of whom had the stomach flu—so that we could go get those answers. I think about the text messages and phone calls from my sisters. I think about how, when I was sitting staring into that mirror, I was also staring at a dozen red roses my best friends had sent to my room, because even though they weren’t there with me physically, they were still with me. All of my friends and family have been with me ever since.
I think about my kids, who give me joy and strength every day. When we completed the three-mile Walk MS, I took it as an opportunity to remind my 8-year-old about when mom couldn’t walk very well, how it’s important for me to walk now because I can, and how much I appreciated him walking alongside me.
I think about the other MS warriors I have met along the way, who have provided insight and a listening ear as I’ve navigated this uncertain disease. They are all what make me stronger than MS.
And so what I would say—what I am finally saying—to others newly diagnosed with MS is this: You are not alone. In this darkest hour, turn to those who give you light. Your family, friends, church community, co-workers. It’s scary to bring it up—and yes, tears and awkwardness might ensue. But you know what? You get through it. People are nice. They might not understand, they might not always say the right things, but they care. They want to help.
A lot of uncertainty comes with having MS. But one thing is certain: You don’t have to face it alone.
An activist in the U.K. discusses the challenges that the Black MS community faces here… Read More