Oh take me take me take me, I’m your plaything now

I am a masochist.

I was known in the kink scene as a “heavy bottom”. I loved pain and could take a lot of it.

So what does this have to do with narcolepsy?

The first time I experienced cataplexy while playing, I just went limp standing up, leaning against the St. Andrew’s Cross, my restraints holding me strong upright. My top noticed and stopped everything instantly, checking in with me, worried at my lack of response. We had pushed harder than ever before, and I had been enjoying it. I hadn’t exactly wanted him to stop, but I wouldn’t have been able to safeword if he had kept pushing. This strange paralysis seemed a direct response to prodding the high end of my pain threshold.

I sought out advice from a leader in the community, and the evaluation was that I was experiencing “emotional shock.” I was definitely playing with fire, but my opinion was that it could be fun to play with fire (I followed Risk Aware Consensual Kink). Going forward, I informed my play partners that I might “check out” while playing, and how to care for me if it happened, as well as whether or not they could continue after I “checked out.”

Often after the paralysis set in, my top would ramp up the pain a bit and I would “break out” of being frozen, and be filled with adrenaline. I craved this sensation; it felt spiritual. Sometimes I would even dream I was communicating with gods. After playing, I’d stumble away, dripping sweat and groggy, and curl up next to my top and rest in silence for some time while I returned to earth, after which we would discuss the shared experience.

On the nights I played, I would drive 40 minutes home, sometimes as late as 2am. I had a very close call almost exactly two years ago, when the snowfall was as heavy as my eyelids and my lead foot, and a car cut me off and I was nearly hit by semi and ended up facing the wrong way down the highway.

When I think about playing again, knowing what I do now, I wonder, will there ever be a point at which cataplexy would not be an inherent risk? And is it a risk I am willing to take, even without intentionally triggering cataplexy? The problem is that this goes beyond “no safewords.” This goes into the realm of “safewords medically impossible.” That is questionable to me on some deeper level. I’ll either need to come to terms with a new level of edge play, or I’ll need to seriously reconsider what my future holds in terms of kink.

Mara Passio

I hear the secrets that you keep

He said I talked in my sleep.

I didn’t realize till years later that sleep talking was unusual. It never registered as something that I should mention to a doctor. My boyfriend thought it was funny. He even recorded my sleepy ramblings on occasion. On one recording I could be heard clearly saying, “I’m going to fucking remember this.” I didn’t.

A couple times in our relationship, I asked him for sex when I was sleep talking, which he happily obliged. I vividly remember waking up and groggily asking, “Why are you fucking me?” He laughed and joyfully responded, “Because you asked me to!” I accepted this answer because it was in all likelihood true, despite my lacking memory. I allowed him to continue to use my numb, wilted body.

That comment – “Why are you fucking me?” – became a running joke for him, but it chafed. I didn’t understand why he had thought it was okay to have sex with me when I was asleep. He knew – I thought – he must’ve known that I was unconscious and couldn’t have understood what I was saying.

I talked to my therapist about it, and her response was that that couples sometimes start sex when they’re half asleep, that it’s normal. I didn’t bother to explain to her then that I didn’t remember saying that I wanted to have sex, or that I woke up long after the sex had been initiated. I assumed these things were implied. I left therapy invalidated and confused.

Now, on the cusp of my narcolepsy diagnosis, I reflect back on this time in my life and wonder if he really did understand that I was truly unable to consent. I doubt sincerely that he did. He and I both believed at the time that I was “half asleep” and therefore awake enough to make decisions such as those. In a sense, we were right about the half-sleep, but I was not awake, not competent to make decisions.

So where does this land on the line of consent? I left those experiences feeling betrayed and ashamed, and then doubly so when later invalidated by an unknowing therapist. Were these situations caused by the lack of a narcolepsy diagnosis, or were they caused by a lack of understanding of enthusiastic consent? Or perhaps both? Did I fail to explain the situation well enough to my therapist or was she truly unsupportive in my time of need?

These are questions that I do not have the answer to. I wish I did. It would make forgiveness easier, because I would know how and whether I was wronged. I understand that, I was traumatized, and so I have a right to that pain, but I also understand, in a sense, that there were other key factors at work that may have made the people who caused the trauma to be unknowing offenders.

Mara Passio