If It Ain’t Broke
Morning is not my favorite time for sex. I’m snuggled down and groggy under my electric blanket tucked perfectly over my right shoulder and ear. It blocks the air that puffs at me from the exhalation valve of my ventilator circuit. I loathe splitting open this cocoon. My mouth feels fuzzy, and drool is crusted across my left cheek after wearing my nose mask all night. I just don’t feel sexy. The voice of my libido is still there, but she is sleep-deprived and doesn’t like getting cold.
We sometimes try to have sex at night if it’s early enough. “No heartburn?” Check. “How’s your hip?” Check. “Did you take the chicken out of the freezer?” Yup. “What time do we have to get up?” Damn. Maybe on Sunday morning.
Friends joke about their waning sex lives. Kids, jobs, aging parents, conflicts, good books, bad TV, and a growing variety of ailments crowd their way into our bedrooms, but I don’t usually participate in this midlife commiserating. Instead, I give an empathetic nod and check the time on my phone. My bedtime assistant should arrive in 25 minutes. Or is this the night she said she’d be late?
About a decade ago, Chuck and I were being interviewed by a sociologist who was writing a book about “inter-abled” couples. While talking about the mechanics of preparing to have sex, Chuck said, “I look at it as a sort of striptease.” He described the ritual – pulling back blankets that I can’t shift, removing pillows, pressing the off button on my ventilator, and even wiping my face as part of our foreplay. This new-to-me idea of focusing on the striptease of it all surprised and delighted me.
Anyone expecting a “zipperless fuck” will always be disappointed, but I wear more than just zippers and had always thought that the task of extricating me from the devices I need was a drudgery we had to endure before we could dive into each other. The number of props and machines has of course grown over time, but now they are part of being a little sexy to me, also.
“How ya feelin’?” is check-in code for, “Do you still wanna have sex?” At this point Chuck has already optimistically taken his little blue pill. If we are a go, he jumps up to use the bathroom and sets us up.
We’re relieved to no longer need birth control, but I now regularly argue with my insurance carrier that frequently decides I don’t need the estrogen ring that prevents vaginal pain. Chuck removes my mask and wipes off my drool. We do our bad-breath checks and I have him give me an Altoid. Teeth-brushing is not an independent activity for me and is messy at best when I’m lying down. Chuck carefully removes the folded pillow from under my legs and tosses it along with our extra blankets and a memory foam pad onto the floor. He swings aside the cell phone mounted to an articulated arm that hovers above my face and unplugs the trackball I use to control the phone. I can’t lean my head over the edge to see, but like the idea of our bedding strewn across the floor with reckless abandon. I am rarely reckless.
Having planned the night before, my knees are already wrapped with protective elastic bandages over right-angled splints to keep my legs from being over-flexed or extended. We quickly make decisions about the remaining blankets, and Chuck disconnects his own thin tube that runs between him and his insulin pump.
Then there’s the cat.
“Should I lock him out?” Many pets are voyeurs, and some think they should be participants. Fortunately, by the time Rex and Nigiri were four, they had an insulting level of disinterest in our sex life. Rex sometimes begrudgingly stared at us, but he usually went to another room. Nigiri staked out a distant corner of our bed with her back to us. They both at least pretended to sleep.
Now we have HighTop, a 3-year-old black and white Maine Coon with a penchant for taking down any prey available. He instinctively targets calves and the Achilles tendon. Toes are also fair game. He doesn’t know and wouldn’t care that my ankles sprain with the stress of small twists. My sock-footed feet flopping in the throes of passion would be irresistible. So, he is banished.
We have learned to ignore him scratching at the door.
Our old house has old features. The windows are drafty, and until last year, our heater was a monster encased in a booming metal fortress that heaved deep surges of warmth from a scorching grate embedded into our living room floor. This beast claimed the soles of Chuck Taylors, cat toys, and old pencils, but in exchange it enabled us to cast off cumbersome blankets, avoiding perilous entanglements. Now we contend with a more ecological but less robust wall-mounted heat pump that releases a gentle whisp of warmth that annoys me with its prissy false promises. I have grown fond of our gray Lasko brand space heater that’s always placed at my feet. With the door closed it quickly heats up our room.
We don’t have children, roommates, or many overnight guests, but our home is still full of people on a schedule. I have a crew, a team, and if I need more than one of them at a time, it’s an entourage focused on doing all the little and big tasks my disabled body can’t do for itself. I don’t need my crew to help with sex, but on occasion, someone shows up early because of a bus, a rainstorm, or a forgotten time-change and they get a glimpse of how it’s done whether they want to or not. And yes, the less-savvy occasionally ask me, “How do you, um, how does sex work?”
I secretly roll my eyes and say, “Carefully,” or explain, “If we ever sleep together, I’ll let you know.” I am kind to and patient with my employees and am always tweaking the tone of our interactions to regulate the boundaries between me and them as we intrude upon each other’s personal lives.
My all-time favorite response to the idea of me having sex was from my assistant Sonia when her boyfriend dropped her off to work for me at Chuck’s home before we lived together. He asked why she was going to a different place. When she explained that I sometimes slept at my boyfriend’s apartment, he was surprised. He wanted to know if Chuck was in a wheelchair, too, and awkwardly asked if I could “do it.”
Her response, rightly so, was, “Her pussy ain’t broke!”
Reaching and touching requires that I ask Chuck to move my limbs. My arm flops over and we laugh. He carefully moves under and beside me, gauging whether a squeak or a sharp intake of breath is pain, pleasure, or both. We laugh again if the lube gets out of hand.
And then there’s a beep.
“Is that you or me?”
“It’s just a Facebook alert.”
Sometimes it’s my I.V. pump telling me that I miscalculated when my hydration bag would run out. Other times, a sharp tone tells Chuck that his blood sugar is heading one undesirable way or another. The bandage above my right breast sometimes bothers me. “Try the other boob, babe.” Or my catheter gets yanked. Chuck gets a leg cramp from yesterday’s weightlifting, or my assistant texts that they’re going to be late. And of course, twice a year Mom used to phone to play “Happy Birthday” on her harmonica. “I hope I didn’t call too early.”
“It’s all good, Mom.”
Through all of this I am reminded of the two promises I keep to myself. One, I will always do the work it takes to have the sex life I want, and two, I will never fake an orgasm. Enthusiasm, our sexiest shared feature, helps me keep my promises.
Alana Theriault (she/her) is a writer and retired disability benefits advocate. Recent publications can be found in The DREDF Blog (Disability Rights Education Defense Fund) and Readers Write (The Sun Magazine, January 2023). Link: https://www.facebook.com/profile.php?id=100091524864722
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