My MS is Stronger than My Smile
Lisa Emrich, in her post, "MS and Politics," quoted Michelle Obama talking about her father, who had MS, "He never stopped smiling and laughing - even while struggling to button his shirt, even while using two canes to get himself across the room to give my Mom a kiss. He just woke up a little earlier, and worked a little harder." Lisa questions the image this conjures up, and points out that MS is anything but a "little" disease.
Well, Lisa, I have to agree with you. With all due respect to Michelle Obama and her personal association with multiple sclerosis, MS once again came off looking like a "just grin and bear it" disease. I really don’t believe that’s how Michelle meant it, but it could be interpreted that way by those who know little about this disease.
It is unfortunate that the image we often see in the media is that of "MS Heroes." The folks who just go on with life despite MS. Some don’t bother with disease-modifying prescriptions; some go the holistic route. They keep on going at their jobs and going about their lives as if nothing is wrong. We love those people; we’re happy for them, but the inference is that if they can do it, then why can’t we?
Somehow the rest of us, who may have a completely different set of symptoms, are supposed to get our minds straight and do the same. "Just grin and bear it Don’t let it get you down… c’mon! I’ve seen other people with MS doing just great!" On top of everything else, we get to feel worse about ourselves and feel guilty if we can’t maintain a 24/7 smile.
MS is a dramatically different disease in different people. Some of us can’t walk. Not because we don’t "work a little harder," but because the lesions in our central nervous system are preventing signals from getting through. Some of us can’t work – even if we get up an hour early.
What we need to see on television are ordinary people with MS. We need to see the ones who have lost the power of sight, speech, and movement. The ones who have lost bladder control, have difficulty swallowing, and live in pain. We need to see the many incarnations of MS made public. There’s the good, the bad, and the ugly. Let’s get it all out there.
Of course, MS, being a sly one, would probably take the day off if I were to take to the podium. People would take one look and proclaim, "See… she has MS and she looks so healthy!"
I like to smile and laugh. I like the people around me to feel good and I do attempt to hide symptoms sometimes. I do that because I don’t want to invite sympathy or questions. I do that because I need time off from it all. But I am unable to hide my symptoms from all of the people all of the time, or even some of the people all of the time. My MS is stronger than my smile.
Mandy wrote for HealthCentral as patient expert for Multiple Sclerosis.