Meet the Monsters
Romantically speaking, MSers fall into one of four categories: Happily married, in a complicated relationship, happily or resignedly single, or single and looking for love. Separated from my husband for nearly a year now, I fall into the last category.
A recluse by nature, I have opted for online dating sites as my source for the quest. I’m a 55-year-old cripple treading water in a sea of able-bodied potential suitors that include heavily tattooed old salts photographed astride their Harleys, businessmen, artists, and tradesmen. My profile consists of a wry little essay about my taste in music and film, gardening and writing. Nowhere do I mention having Multiple Sclerosis.
Determining when to reveal my disability has been a slippery slope. Once email contact is made, I generally stick to the practice of omission unless my gut tells me to put it to a guy forthwith. When I do fess up, the reactions are illuminating and sometimes maddening. There’s a curious little kid inside all of us, and with that comes a sometimes bewildering display of blundering judgment calls people make whenever and however they learn that I have MS. Much like the child who, upon discovering a hornet nest, proceeds to poke it with a stick.
The most common questions I get are these: 1. Are you wheelchair-bound? 2. Are you able to have sex? Since I walk with a cane, I answer no to the first question, but it sets my teeth on edge. It might be a fair question, but to my mind it is a bit of a cheat, as though impatience has set in and he doesn't want to wait for a face-to-face meeting to find out. As soon as disease is on the table, the focus shifts from my intelligence, charm, and wit, to my body and how it functions. This shift of perspective takes the gauze off the lens and turns a romantic comedy into a carnival documentary in which I am recast as a sideshow freak. Needless to say, I feel dehumanized.
To the question about sexual function I respond by abruptly ending the conversation. It is another, more grievous cheat. Besides being insufferably inappropriate, it could indicate this person’s prime motivation for making contact. And yet, disturbingly often, a man who is too classy to commit such gauche missteps does not open doors for me, help me with my coat, or offer me his arm while walking me to my car at the end of our first date. All of these glaring faux pas awaken my sleeping monsters. My inner ogre called MS is not a lone cave-dweller; it lives with a mostly even-tempered spouse named Rational and several rambunctious children by the names of Ego, Indignation, Smart-ass, and a toddler called For Cryin’ Out Loud.
Recently I reached out to a male MS buddy to ask for his insights, specifically about the unchivalrous behaviors I’d experienced on these first dates. He told me it is the Women’s Movement that has Baby Boomers all befuddled. Men are so afraid of insulting us that they err on the side of caution. But, my friend told me, here’s what you can do: On your next date, simply reach out for his arm and he’ll latch right on. And when you approach an exit together, lay back and allow him to get there first, he’ll open that door for sure. All a man needs is some gentle encouragement.
I took my friend’s advice and I’m happy to report that it worked. My inner monster family cave is abuzz with good will. I look at men afresh now, as people who are as self-absorbed and unsure as I am. Being generous and sympathetic by nature, I’m more than happy to give a guy a leg up in the chivalry department if it means he might give me one on our way out the door. Not only do I appreciate a man’s arm to steady myself and a door opened for me that might be heavy and throw me off balance, I sometimes really need this kind of help, and to get it, I must develop a way of soliciting it in diplomatic ways. And, if all else fails, nudging myself into a helping mode takes me out of my body for a moment and reminds me that giving is a worthy substitute for getting whatever it is I need or want.
Managing a disabling and unpredictable disease forces me to live in the moment, and that surely has its upside. But one residual effect is selective amnesia. I got so wrapped up in grumbling about the lack of understanding and compassion among the able-bodied community that I forgot to remember a time when I was one of them: Strong, self-possessed, seemingly invulnerable, clueless and cavalier about the disabled among us, and feeling truly like an equal in the game of gender politics.
Now I possess the advantage of having been in both worlds. I can do something they can’t: Imagine what it’s like to walk in their shoes.
How well do people around you understand MS?