Riding the MS Roller Coaster

Having multiple sclerosis (MS) is like riding a perpetual roller coaster. You never know what to expect, but there’s still a lot of living to do.

Written by Ann Pietrangelo

“In July of 2003, within a span of just a few weeks, I was transformed from a healthy, productive woman into one who could barely walk without assistance. For six long months, I rode a maddening roller coaster, my body betraying me one limb at a time. Healthy one day, invalid the next. In 2004, after a seemingly endless round of tests, I learned I had MS.

“It may sound strange, but the pronouncement came as something of a relief. My beast now had a name. MS is a disease of the central nervous system. Simply put, it randomly shorts out your nerves. It’s hard to walk if you can’t feel your legs. It shows itself in ways unique to each individual who has it. No two stories are alike. Some have incredibly mild cases; others find themselves partially, even completely disabled. MS strikes healthy adults in the prime of life, often robbing them of their independence.”

I wrote that in 2005. Back then, I could not have foreseen just how vibrant and healthy I would feel today. I’ve been living with MS for more than a decade now, and what a whirlwind decade it has been. Progressive forms of MS cause a steady worsening of neurological symptoms. Relapsing-remitting MS, the kind I have, causes periods of disease activity that are followed by remissions in which symptoms improve or disappear. After seven years of more relapses than remissions, this unpredictable disease miraculously eased up. Enough so that I could dance at a wedding and skip like a fourth-grader. Enough so I could fold up my cane and put it in the closet.

Unfortunately, my new strength was tested by a diagnosis of triple-negative breast cancer. I hadn’t seen that one coming, that’s for sure. So there was some surgery, 16 rounds of chemotherapy, and 30 radiation treatments to contend with. You do what you have to do. Now, about that MS…I don’t know the secret formula that keeps it at bay. I leave the medical aspects of the disease to the physicians and nurses and researchers.

What I do know is what it feels like to have your body betray you, to stop doing the things you tell it to do, to not know from one day to the next what your abilities and disabilities will be. I know what it’s like to worry about health insurance and to feel lost in a maze of medical confusion, but it’s important not to get stuck in the mud. Life marches on and we best march along with it.

One might look at all this and think I’m a fairly unlucky person, but I swear I’m luckier than most. I am, as far as anyone knows, cancer-free, and my MS is currently mild and manageable. Despite two life-altering diseases, I’m still going strong. How long we get to be here is unknown, so I figure it’s a good idea to LIVE while we are here and give back when we can.

That’s why I’m a Multiple Sclerosis Foundation (MSF) ambassador. The MSF is a service-based, nonprofit organization dedicated to helping people with MS maintain their health and well-being, and I’m thrilled to be on their team. My MS is not your MS or her MS or his MS, because it truly is that different for each of us. But we no doubt share some common symptoms and experiences.

Yes, it’s been a ten-year roller coaster ride, but the ride has been a lot smoother lately, and for that I’m grateful. My seat belt is still securely fastened, but I’ve got a lot of living to do. As long as the ride is smooth, I’m making the most of it. I’m eager to lend my time and support to the MSF and to the people who need it. To learn more about MS or about the MSF visit www.msfocus.org.

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