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.
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.
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."
So I decided to be proactive. Below I have listed the things people with MS do not want to hear and some possible alternatives I’d like to hear:
1. Is MS the disease that Jerry Lewis does the telethon for?
How about: Gee, did you get that Jerry Lewis phone number last Labor Day? I really want to call and donate right now.
2. It’s definitely not THAT hot in here, it’s just you.
How about: Here, let me put a chair by the open refrigerator door so you can sit in front of it.
3. Come on, you’re not tired. Don’t be a party pooper. Everybody is tired. You’re not the only one.
How about: Gee, I certainly would enjoy your company because you are so immensely popular, but at the same time I understand that the most prominent symptom of MS is fatigue. So do whatever is the most comfortable for you.
4. Are you sure the doctor said "MS" and not "PMS"?
How about: Do you think it's going to rain today?
5. If stem cell research works for rats, why can’t it work for you?
How about: I just wrote a letter to my senator pushing for the new Stem Cell Research Bill. In fact, I have organized thousands of people to write and work actively to put stem cell research higher on the list of priority funding for healthcare issues.
6. Are you drunk?
How about: I’m drunk. Ignore everything I say.
7. What’s so bad about being numb? At least you’re not in pain.
How about: Would you like a piece of chocolate?
8. Are all the shows on MSNBC about multiple sclerosis?
How about: I’m an idiot.
9. Why are you always asking where the bathroom is?
How about: This is a great restaurant. The bathroom is huge and right over there to the right of the entrance.
10. Why are you walking like there’s a broom up your butt?
How about: You look very pretty today.
11. The good news is that your MRI has proven that you actually do have a brain...
How about: You may very well be the smartest, most evolved person I have ever met in my life.
I hope this list helps. It sure does help my friends when they are completely baffled about what to say to people they meet who have MS. I even gave it to one of my new doctors who said she only had issues with number 8 and it should be changed to "Gee, I sure do enjoy Rachel Maddow. I just wish she’d wear higher necklines on her shirts."