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. Many blog posts offer tips and words of wisdom for others newly diagnosed. I don’t know where to begin — MS is such an individual illness, with no two cases 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 2 1/2 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 flash to the moment after my appointment, as I sat in the hotel room across from the Mayo Clinic, staring in a mirror (very cliche-like), thinking about my future. The fear. The sadness. The uncertainty.
But May 25 is World MS Day, and I told myself that today, I would talk about it. Today, I would share something of value that could potentially lift up someone else struggling. The theme for World MS Day is Stronger than MS, and I had no problem thinking about what makes me stronger.
Because when I think back to that cold December day, I also think about my husband, driving 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. 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, which 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. We completed the three-mile MS Walk this month. 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.
If you ever feel you don’t have someone you can turn to, please check out the National MS Society. They have loads of information; they hold several events; and they could help find a support group in your area. Or, check out their MS Connections feature, which connects people with MS to each other for support and sharing.
A lot of uncertainty comes with having MS. But one thing is certain: You don’t have to face it alone.