Say What: Things I Wish People Would Say About My MS

I'm a fairly positive thinker. At least when left to my own devices. I always think the cup is half full, that having MS is better than having a lot of other things, and that I will someday marry Bruce Springsteen. Actually he'd be on the road too much, so I will probably have to settle for Gabriel Byrne. OK, maybe I take the positive thinking too far. Maybe I am a fantasist.

Staying Positive

But since having found out I have MS, I've discovered positive thinking about my MS means being a realist. It was 9 years ago that I was finally diagnosed with the multiple sclerosis that I think I had for the past 25 years. When that happened, I started to talk more logically about my aches, my pains, my numbness, and my inability to stay awake for more than 6 or 8 hours at a time. Not that I want to talk about it that much, but I have learned by talking to the right people that some of my problems can actually either be solved or at least somewhat alleviated.

Now I must say that those right people are usually either other people with MS, or my buddies in the health profession who I or my health insurance (hopefully) is paying for their opinions. In fact, over the years, my favorite 6-month thing to do is to talk to my neurologist. (Knock on wood that it's that long between visits.) I know when I read him, or now her, a list of everything I have been noting for the last 6 months, that he or she will actually have some suggestions for me on how to better deal with my lovely body that happens to have this lovely disease.

Avoiding the Trap

But the one thing I have noticed from talking to hundreds of people with this disease is that we all run into people who just say the wrong thing. They don't mean to; they just don't quite "get it." They can preface it with "my sister has MS" or "my best friend has MS" but I still get a slight shiver in my soul waiting for them to say the next thing. The bottom line is that I am relieved when they say they know someone with MS, and I’m scared to death of what comes next. Usually while listening to them, I fantasize about kicking them. Not for real but in more of a cartoon-like way. Like the minute their mouth opens about what they know about MS, I have reckless leg syndrome and my leg just happens to kick them right where they live. I say, "Oh sorry, it’s my reckless leg syndrome, the only part of MS that I so enjoy."