Longings of an MS Patient

The architectural style of my mind is mid-century modern bilevel. Problem is, I hate that layout. It is inelegant at the very least and impractical at its worst. You walk in the front door to two sets of stairs: one goes up to the kitchen and living areas and the other goes down to the rumpus and laundry rooms. It’s a considerable waste of space. Instead, I love the rambling ranch: easily accessed, no stairs, no laborious transition from the outside to a living space within. A straight shooter of a layout. No fake-outs, no deception. Just like my personality.

It’s my mind that needs the makeover

But I’m stuck with the convoluted layout the goddesses gave me, doomed to wander from one airless, windowless box to another, forced to navigate steep staircases and dream of a folksy, ship-lapped, open-concept space that only Chip and Joanna Gaines could achieve—except it’s my mind, not my house that needs the makeover. And no, dropping acid is not an option. What’s an addle-brained MS gal to do?

It’s always come naturally. As a four-year-old, I spent more than one nap time sitting bolt upright against the bedroom wall, arms akimbo, imagining Mighty Mouse swooping in singing “Here I come to save the day” in his operatic tenor, scooping me up and flying away—immediately after which I imagined myself as Mighty Mouse himself swooping in and rescuing whoever needed it, singing my intentions in a not-so-operatic mezzo soprano.

In a world of possibilities, I ached for commitment

Mighty Mouse was the first in a long line of heroes that frustrated me. Not only did I want to be saved by him, I wanted to be him. That kind of loving and longing was a prelude to the confusion that followed me through life. I belong nowhere and with no one. You would think that might be freeing, open up a world of possibilities, none of which I’d have to hitch my wagon to for long. But I ached for commitment, romantic love, traditional feminine submission to my man, dedication to a calling, doing good work that I was cut out for, where meaning wasn’t something I’d have to reach for. It would always dangle there in front of me, a flashing neon vacancy sign on a dark and rainy highway, beckoning the traveler to take a room for the night. For the meaning of life, take exit 42. Like Marion Crane in PSYCHO (1960), who pulled in to the Bates Motel and figured she’d take a shower, crawl under the sheets and get a fresh start in the morning. She was so clear, contrite, ready to go back home and face the music. She would return what was left of the money, marry Sam Loomis and live happily ever after. Marion’s mood lifted after talking with Norman, light and unburdened as she stepped into that warm shower, floating on God’s own forgiveness for her detour into greed—right up until the moment Norman cut her to ribbons and stuffed her body in the car trunk. I was never sad for her, she was so at peace. She had a plan, that’s the important thing.

Allowing the words to carry me along

I still have some of the same plans I had before MS: I still long to stumble down that parched, lonely road of novel craft, my second. As tedious and difficult as it is, I even ache to start the research that must come first, years of reading and note-taking and pondering, allowing the words to carry me along as a leaf is pulled along a stream swollen by spring rains. No matter what I thought the story was going to be about, research and writing always call the shots in the end.

Opposing aspects of my identity

These longings represent two opposing aspects of my identity: the hero of my physical world and the architect of my interior, trying to capture what is inside all of us. Like a leaf racing atop a surging stream, the right words usually move just out of my grasp, disappearing downstream as I strain to keep them in sight.

Perhaps I’ll catch one tomorrow.

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