seattle

By Litsa Dremousis.

I stood nude in my doorway and laughed.

“Thomas! Come here!” I called to my dog, a willful Pomeranian who’d jetted into my building’s hallway on the heels of my new boyfriend Greg. So much for my sultry goodbye. Greg burst out laughing, too, scooped up the wriggling Thomas and set him behind my door jam, where I nudged him back with the red lacquered toes of my left foot. Still giggling, Greg and I kissed again, once more wrapping up a delightfully carnal twenty-four hours in which we only stopped for Thai food and cherry-almond pie.

I shut the door, hobbled to my bedroom and collapsed on my disheveled bed. The surrounding terrain resembled a Motley Crue video, with all manner of sex detritus strewn about, minus the drugs and hairspray. Thomas yelped and looked at me with pleading eyes, so I sat up, scooped him onto Greg’s pillow, then resumed lying flat, as joyful as I was immobile.

Greg had arrived at noon the previous day, ostensibly to see a documentary playing up the hill. It was our fourth date and when he kissed me hello as I reached for my purse, we kept kissing and soon were horizontal and writhing, despite Thomas’ unbroken barks of protest. I kept apologizing that my dog was losing his mind and Greg kept assuring me he didn’t care. And based on his performance, I believed him.

Our first time was free from the awkwardness that often hovers over such encounters, as each of you figures out who likes what and where and how. Greg and I simply clicked: we made wonderful discoveries, but felt like we’d known each other forever. He had the wisdom of an older man, but the parts of a younger one and while this wasn’t why I soon fell in love with him, it certainly didn’t hurt.

Thomas fell asleep and I wrapped the bedspread over myself and basked in post-coital giddiness. I was happy. Pure, undiluted happy. Greg was brilliant, compassionate, hilarious, had read my work before we’d met and was as handsome with his glasses off as he was with them on. (I have a thing for glasses.) My longtime partner had died four years prior and it’d taken me a long time to feel like a sexual human again, as opposed to a decaying lump of seaweed. The man I’d dated previously had helped me navigate this complex transition, but with Greg, I was starting off wholly libidinous and feeling like myself. My life was good. Great, even.

Then I tried to stand up.

I assumed, perhaps naively or maybe prematurely, that because my sex drive was fully recharged and because Greg already knew I have both a dead partner and Myalgic Encephalomyelitis, a chronic, incurable, degenerative illness that presents similarly to M.S., our sex life would be relatively uncomplicated. Which sounds counterintuitive, but all the weird stuff I can’t control was already out in the open and Greg still pursued me. He shared tales of his past to level the playing field, as such, and I still very much wanted him. I’m 47 and he’s 51 and as he sagely noted, it’d be so much stranger if neither of us had shades of color to our past. If you make it to middle age without some deep wounds but, also, a greater perspective and richer appreciation for joy, well, you’ve likely padded yourself in bubble wrap or just haven’t been paying attention.

So, traveling along merrily, I didn’t see the upcoming speed-bump. We’re engaged now, and our sex life largely consists of perpetual lust, food and dog appeasement. With no disrespect to our previous loves, Greg and I sometimes hold each other, laugh and ask, “Where the hell *were* you?” There’s an old Greek adage, “The pot rolled down the hill and found its lid” and we’ve heard it from my family a dozen or so times now. I’m the master of complicated relationships, but this one is as easy as it is loving. Unfortunately, though, no amount of love cures an incurable illness. And over time, any amount of illness will impact your sex life.

At first, the effects weren’t evident.

Greg and I reveled in each other’s minds and wit and this prompted still more disrobing. We remained devoted to our respective jobs–each of us is fortunate to love what we do–but quickly adjusted our schedules to see each other as much as possible.

And that’s when the speed-bump rose, forcing me to slow down. Because adhering to deadlines for two books and several essays, all while constantly seeing the love of your life and boffing him with vigor will, it turns out, lead to some immuno mayhem. The ceaseless activity and lack of sleep, i.e. frequent components of a super-fun new relationship, quickly led to less fun things like falling and fevers and secondary infections. (No, not those kind.) Nausea, chronic pain and near paralytic levels of exhaustion, all hallmarks of Myalgic Encephalomyelitis, began kicking the crap out of me more so than is usual.

I’ve had M.E. for 23 years and excel at symptom management. But I’ve grown sicker since the last time I spent this much time with a partner, and Greg is now my fiance, no less. I genuinely like partaking in his world. So, despite his culinary wizardry, I’m learning to make dishes with more than four ingredients and figuring out how to use his NASA-level coffee maker. I like watching him teach at the University of Washington or listening to him explain the finer points of his photography equipment. Not because Greg is pressuring me. Far from it. Indeed, he’s incredibly understanding that I do some of the aforementioned while lying flat on his couch. And he has immersed himself in my worlds, spending much time at literary events and with my friends and family. Basically, to poach Cole Porter, we get a kick out of each other.

The unavoidable fact, however, is that for the first time in my life, and much to my chagrin and occasional humiliation, there are brief times I’m simply too ill for sex. And then I feel like an idiot. Because I love Greg and we consistently have great sex. Saying no, however temporarily, is like declining the steak and ice cream right there on the table before me.

He and I can approach this in the touchy-feeliest way possible, but barring a fetish, there’s nothing sexy about illness. I have friends who don’t like to shag when they have a cold, for god’s sake. If I waited ‘til I felt well to have sex, I’d die celibate. So, I’m always ill when I have sex; it’s just a question of degree. Mildly symptomatic? “Fire down below!” Extremely symptomatic? “Can we wait ‘til morning, honey? In the meantime, can I have a shoulder rub because it kind of hurts to breathe?”

Greg loves me and has wryly noted it won’t fall off if he has to wait a few hours. He has lead the way in figuring out new and creative ways to make gravity work for us. In the best way, our bed has become a sort of laboratory. And because all sexual experimentation, sick or well, requires trust and communication, in a roundabout way, my illness has brought us even closer. I’m not fabricating a silver lining, but that is pretty wonderful. Especially as we plan to spend the rest of our lives together and all.

Of course, should there be a cure, start a pizza fund for us and please donate generously because we’re leaving the house again never.

Litsa Dremousis’ work appears in The Believer, Esquire, Hobart, Jezebel, McSweeney’s, MSN, Nerve, New York Magazine, The Onion’s A.V. Club, Salon, Slate, The Weeklings, on KUOW, NPR, and in sundry other venues. She’s completing her first novel, assuming it doesn’t complete her first. On Twitter: @LitsaDremousis.
Photo credit: Trent Hill

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above!

Join Jen Pastiloff, the founder of The Manifest-Station, in The Berkshires of Western Massachusetts in Feb of 2015 for a weekend on being human. It involves writing and some yoga. In a word: it’s magical.