Sex with ALS

Love Thy Self

I returned from a long trip during that time of the month—no, that other time. I was ovulating and had spent my flight home aroused by everything, from the sight of sweat on a man to how my shirt rubbed against my flesh.

When I got home, I immediately got in bed—but not for the nap I said I needed. Exhaustion be damned; I was in heat.

Now, I lack the arm strength to drive my wheelchair, so positioning my working finger into, well, place requires a routine fit for the Paralympics. I first rock my body back and forth to spill my arm over my thighs then I wiggle my legs until my hand falls between them. I lift my shoulder up and down until I've pulled off my nightgown and my finger touches down.

Sometimes I don't know if an orgasm is worth the amount of manual labor involved, but in the ALS community, we live by the adage, “No White Flags,” so I persevered through the post-flight fatigue and the muscle cramps. I tussled with my blanket until I was sweaty and half-naked but finally in position.

I was resting before the real rewarding work began when my chatty sister-in-law barged into my room without as much as an ahem and proceeded to have a full conversation with me as if my hand wasn't on my exposed vagina. 

This continued for far too long until I interrupted her drivel and reminded her I was trying to nap.

“I'm sorry. I'll leave now,” she said, without turning around but rather walking toward me. 

“Oh, no, look where your hand fell,” she said as she moved my hand by my side and covered me.

With that, both my body and determination to come resigned. Defeated and wrung out of energy, I passed out.

Blow-up Doll: Priced to Move!

I lay atop the beaming rose colored satin sheets, limp legs spread, primed but hardly ready for his entry. He kisses my lips and my collarbone while gently rocking back and forth over my vulva, first slowly then with escalating pressure until his cock dips and prods downwards seeking a juicy nook. Only it is met with halting friction for ALS has stripped me of a sex drive. 

He lumbers across me to the bedside table to get lube for his anxious member. Now he slides in as easily as an oyster down a throat. I relax into him, reveling in the closeness and internal warmth. 

But it soon becomes routine and my mind drifts to when the dogs last went out and wild able-bodied sex of yore and weekend plans. All while periodically moaning to feign  participation. It’s not as though it doesn’t feel good, it’s just… neutral. 

He lifts my leg to go deeper, and I snap back to the present pleasure of being full, and my moans become real. He lifts my leg a tiny bit higher and all pleasure recedes as I cry out in pain from my stiff hip cramping.

I feel like a gaudy blow-up doll, affordably priced due to only having one hole rather than two (or three!). A doll that yearns to caress his strong chest and grab a handful of his ass then slap it. A mute doll that  cannot give instructions in the moment or slowly suck on his fingers. 

He is getting close as evidenced by a pulsating and quickening and breathlessness. I slide with the silky sheets, sheets that in another room, indeed another life, would shout, “Hey, this bed is for sex!” A sleazy ploy that might make some women cringe. I, however, got the sheets to make it easier for my weak body to turn in bed. 

Finally he collapses onto me, and I am satisfied more than anything to have intimacy that isn’t his taking care of my failing body. 

Shall I Recap My Night for You? 

I asked my husband if he wanted sexy time, but he turned me down, exhausted and saying, “It wasn’t the right time.” Undeterred, I had my sister set me up with my vibrator in bed while my husband was asleep on the couch. 

After my sister left, I realized I can’t use my fingers to turn it on. Fifteen minutes later, the horny side of my brain figured that if I put the back end in my mouth I could turn it on with my teeth. 

I was psyched for the win when, of course, the vibrator died. The horny side of my brain said, give it a go manually, except I only ended up edging myself for an hour until I gave up and passed out. 

The next morning, my husband found the vibrator in the bed and all of a sudden became mushy—telling me he loves me, asking what I’m wearing, showering me with attention. At this point, I thought, fuck it, and asked him to charge the vibrator for me. He obliged and then blurted out if I wanted sexy time tonight, but, honestly, I would just rather do it myself.

Touch Again 

I don’t quite know when I lost it, but I sure remember when I felt it again. The buzz or electric feeling that jolts through your body from a single, simple loving touch. 

My ALS bubble is full of people who constantly touch me for all my daily cares. Even in the nude, as they're bathing or dressing me, it is not the electric feeling that I was missing.

I can count on a single hand these moments, but the feeling was so intense, I often found myself craving more of it.
I once spilled my burdened heart about how ALS had stolen pieces of me. The things I kept hidden.  She listened and cried with me, then leaned in to wipe a tear from my face so softly. The tenderness made me weep harder. I turned to the touch wishing it lasted forever. The warmth between my legs suggested leaning in for a kiss, but my mind was paralyzed, cementing me in the pulsing ache. Did she feel the same? 

Another instance, when the thoughts terrorizing my mind about my prognosis left me frozen, instinctively and naturally, she recognized the fear in my face when speaking felt impossible. She grabbed my bony, clawed hands into hers, overwhelming my chest with flutters, but her touch grounded me. I longed to pull her to me and lean in for an embrace but my arms are battling gravity—I can’t even move my fingers let alone someone else’s hand inside mine. I wanted to lift my arms to hug her and feel held. When she let go, I was consumed by loneliness. 

The worst ache of all was the day she witnessed my panic attack. Starving for air between gasps, I slowly returned to reality with her gentle brushing of my arm and face in a tender and terrifying way. Suddenly the adrenaline rush from the panic switched to a sweat of wanting and wishing for more. The thoughts in my head swirled from feeling like I was dying to the warmth of her presence that assured everything would be okay. She calmed me to sleep, and I was left only with dreams of what a lifetime of this might look like. I woke up to the reminder I will never know.

These fleeting moments are painful yet thrilling. I yearn for more, a glimpse into what love is.