One Woman's Story: "MS Isn't Going to Define Me"
I was diagnosed with multiple sclerosis when I had just turned 31, but in hindsight, I had probably been having symptoms since college. I remember the first time it felt like something wasn't normal. I was working at an animal shelter and reached into a cage to get a cat. It was 8 pounds, but I couldn't pick it up. My arm wasn't able to do the movement I was telling it to do. There was the occasional bladder issue or leg pain, too, but the symptoms would always go away, so I didn't think there was anything wrong. It's easy to dismiss symptoms. When you're in your 20s, you don't think it could be something serious.
The symptoms that finally sent me to the doctor occurred in 2007. My movements weren't quite right, and I felt groggy. That night at dinner, I was using my fork and completely missed my mouth. The same thing happened with my toothbrush. I saw my primary care provider the next day, and he sent me to a neurologist and ordered an MRI; it found two suspect lesions. Because I was so young, he recommended a specialist. I had a diagnosis within six months. Finding out I had a condition that I would face for the rest of my life—and one that generally gets worse—was overwhelming. But I like overcoming obstacles, so I decided to immerse myself in support groups and seminars. The first one was given by local health care professionals. It was raining, and my husband dropped me off at the door, but by the time he parked the car I had made up my mind to leave. I wasn't emotionally ready. Some of the attendees had canes or wheelchairs, and it hit me that one day that might be me.
Now, seven years later, I not only attend seminars but often speak at them. Don't get me wrong: I still have my bad days, and they're frustrating, but I've decided that MS isn't going to define me. It's something I have to manage. For example, I'm really sensitive to temperature changes. Heat turns my body to Jell-O; even taking a long shower or drinking hot soup can affect me. So I make sure I have a way to cool down. If I go for a walk or bike ride, I bring ice packs that I can squish to get cold or a cooling vest that I can use to recharge. They've come in handy. After my diagnosis, my dad and I formed a National MS Society chapter bike team. We race in the MS 150, a weekend-long bike ride that covers 75 miles each day. Over the last five years, we've raised about $235,000 for MS. I'd had enough of hearing the list of things I shouldn't do. So the night before my first ride, my husband and I went to a bike shop and ended up buying a recumbent trike so I wouldn't have to worry about my balance. We registered my name for the race the next morning and I headed to the starting line. I rode 30 miles. On the second leg of the race the following day, the entire team waited at the last rest stop and we rode the final five miles together—one big family. Early on, I had become a prisoner of my fears: What will happen to my body? But my bike has given me independence and helps me reclaim my confidence.
No doubt about it
It's easy to get stuck in a rut when you have MS, but it's important to maintain autonomy. I had one doctor suggest I cut back at work (I'm the director of development at a high school in Milwaukee). But I knew that would mean shutting things down. Knowing there are people counting on me inspires me, even when I'm not feeling my best. Besides, if I need to ask for help, there are always people to lend a hand. My sisters and mother live nearby, and I have great friends. You learn quickly whom you can depend on. I was at a restaurant with a friend once and knocked over a glass of water. When you've got MS, that happens, and when it does, you might seem intoxicated to some people. I just looked at my friend—then she knocked over her glass, and we both laughed.