One of the least attractive aspects of having multiple sclerosis is that it has turned me into a bit of a princess.
When I was a little girl, I never wanted to be a princess. I didn’t think it was any luxury to be dressed by a flock of ladies-in-waiting. I haven’t reached that particular stage of princessness…yet. But it could happen. The other night when I was in pain, my husband got a bit over-solicitous, and pulled a sock over my decidedly un-Cinderella-sized foot. I said, “Let’s not make this a habit.” I thought that would stop him cold. His eyes widened in horror. Then he picked up the other sock.
Am I a princess? I can not bear to stand in line. Now you’re going to hate me. Who doesn’t hate those princesses you see at the grocery store who hiss and flare their nostrils if the person in front of them pulls out food stamps, or, heaven forbid, roots around their pockets to furnish exact change? I promise, I’m not that kind of princess. The hissy type. The type who berates the slow moving cashier. But I tell you, a slow moving line sends me into a panic, a crisis I try my level best to keep to myself. Standing, simple standing, is an arduous task for me. The longer I stand, the more painful it gets. What starts off as a tingle in my legs swiftly escalates into something like a burn. If you’ve ever been tickled too long, you might begin to get the idea.
I know. I know. That seems kind of strange. Welcome to multiple sclerosis.
Am I a princess? I don’t clean my own house. Now you hate me. I do the light cleaning. I do the family wash. If my husband makes the dinner, as a rule I do the dishes. Unless, of course, my husband has made the dinner because I’ve had a rough day. On those rough days, I get out of the cooking and the dishwashing, while he is stuck with both. My husband picks up my slack. But he doesn’t pick up that much around the house. For that, and for the deep cleaning, we turn to M., our housekeeper. M. is extremely non-judgmental. I have never, ever, heard her trash-talk our family for our slovenly ways, like I do when I’m the one cleaning up. She would never say, as I said this morning, “A dirty thermos? In your sleeping bag? Really?” She just goes about her business of cleaning our house, and lets me go about my business of undoing her good work. M. does this work because I find it too fatiguing to drag a mop across the floors, yet in all the years she’s worked for us, she’s never once commented on how strange it is that I summon up enough energy to pop over to Y to lift weights.
What M. does is the real heavy lifting. On those weeks when M. can’t make it, and I’m the one to clean the house, I only last about 40 minutes before my legs start buckling beneath me. Add just about any commercial cleaning solvent to the equation, and I’m as dizzy and wrecked as a high altitude climber who forgot to tote the oxygen. When M. returns the following week, I’m as happy to see her as my salivating dog. I apologize for the mess I’m too gimpy to clean. Then I get in my car, and I drive off to the Y.
So, to recap: I don’t stand in lines. I don’t clean my own house. Now let’s add the most princessly feature of all…can you guess?
I don’t work.
Not to make money, anyway. Now you hate me. You work. And work is no fun. I know that. I worked once. I was working three jobs and going to grad school when I was diagnosed with multiple sclerosis. I never made very much money. I made so little, in fact, that I really resented that chunk that came out of my paycheck to go to Social Security.
These days, the only work I do is fun stuff; I write, and I help other writers write. I touch no filthy lucre. Like any princess, I have my favorite charity. All the proceeds go to the arts center down the block. If I’m too much pain, I cancel, or I postpone. No one is the wiser. No one is my boss.
I am a princess. I have to live by a separate set of rules. I don’t stand in lines, I don’t clean my own house, and I don’t work for money, just for fun. There is nothing about multiple sclerosis that is fair.