Anyone around my age, give or take a decade, knows this line:
“It is always better to look good than to feel good. And you look marvelous!”
This was the catch phrase of Billy Crystal’s Saturday Night Live character, ‘Fernando’. The cigarette smoking, latin host of a talk show held in his favorite booth at the cocktail lounge he frequented. Funny phrase in the skit. Not funny in real life.
Now, though I have not experienced it, many MS sufferers tell of people being rather rude in claiming the sufferer looks fine, so it can’t be as bad as they claim. Well, apparently, MS watched far too much Saturday Night Live as a teen in the nineteen-eighties (I’m going with the idea that MS is the same age as me. I can relate to it better. Plus, it’s fun to think MS had a Fade Flat Top, wore parachute pants, and was a budding breakdancer going by the name of DJMS. It’s okay. I can say this stuff about MS. I have MS so, yeah. I can make fun of it. You can too, but only if you have MS!). MS took Fernando’s catch phrase and decided to live by it. It truly makes you feel completely and totally shitty. Meanwhile, it’s often completely and totally invisible to the outside world. I’ve mentioned the fact that it does carry the nickname ‘The Invisible Disease’. This is the reason.
As I said before, I really haven’t had to deal with someone accusing me of not being very sick, but I do deal with another situation that this disease creates while out in the public scene. A statement that makes my brain cramp up every time I hear it.
“Well, you are looking good! You’ve got that going for you.”
Now, I know there is no divisive or intentional harm meant by the statement. It’s just someone trying to be nice. Still, my first thought is to respond with this:
“Well, I feel like shit.”
But, really, does anyone want to know that? Probably not. They don’t want to hear about the fact that you should be using a cane, but you hate using it. It makes you feel old, broken, or simply feel like people think you are posturing. They don’t want to hear that one leg is numb from the middle of the shin down to your toes and the other has arthritis in the ankle, so you don’t even know which leg on which to limp. They don’t want to know that your wife does most of the driving, yard work, etc because you have to take breaks every fifteen minutes. They don’t want to know. They don’t want to hear. They don’t want to imagine it.
Those who know me, or have read MSFMS for it’s full run so far, know that I used to be a musician. The way one looks, in that biz, is very important. It is your public image. It’s how you want people to see you. After thirty plus years living in that world, one doesn’t just give that up. I still like looking as best as I can, when in public. If for no one else, for my wife who I would like to continue to find me attractive. (So far, she still does. Well, as far as I can tell.)
So, yes. I may look like I’m doing well, if you run into me out and about. It’s intentional. I put a lot of work into it. Most likely, I would rather be curled up on the couch, clad in PJs, where I don’t have to explain that it was an MS twitch that caused me to toss what I was holding onto the floor. Or explain to a bartender, no I’m not drunk. That’s just how I walk. Or ask someone to hold on a second, my brain just forgot whatever I was trying to say. But know that it may have taken every ounce of my will to force myself off the couch. To deal with the heat of a shower. To leave the house (especially in this summer heat). Although I know you mean well, don’t tell me how good I’m looking, even though I have MS. I am not Fernando. I have no choice. Looking good is all I have left. I’m afraid feeling good took the last train to Timbuktu, and isn’t returning. Every once in a while, feeling good drops me a postcard, or gives me a ring, but it never comes to visit anymore.
Maybe I should augment the catch phrase.
(Insert Fernando voice)
“There is no option to feel good. So try to look good.”
That’s all I’ve got this week. See you in the next!