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
Advertisements

You know I’d give you everything I’ve got for a little peace of mind

I was recently diagnosed with bipolar disorder, after having been diagnosed with depression for six years. This change in psychiatric diagnosis is coming on the eve of my narcolepsy diagnosis.

When I recently changed psychiatrists and described my symptoms to her, and mentioned that I was only recently diagnosed as bipolar, she looked at me in disbelief. “It took them this long to figure out?” I have periods of intense sensation seeking, hyperfocus, and impulsive spending, drinking, and sexual behavior, followed by periods of catatonia and depression. The problem? During the periods that could easily be described as “manic” by what I just described, I still slept. I always could sleep.

Now, I would sleep less, mind you, closer to seven hours a night instead of, say, twelve at night plus a few hours in naps. But that didn’t seem to be enough difference for my doctors to say definitively that what I was experiencing wasn’t some sort of impulsive attempt to drag myself out of depression. This was not helped by the fact that I often experience mixed episodes, where I feel both extremely upset but extremely high energy at the same time.

The fact that this disorder went untreated for six years, and instead was treated as depression, was the primary reason why I was viewed as a difficult patient. I was clearly motivated to get better, and would improve while inpatient in the psychiatric hospital, when I had very few stressors and could sleep when I needed to and had a very concrete schedule. However, the real world is not like an inpatient facility. And I was neither on the medications nor the treatment plan to help me deal with that.

I’ve been inpatient at psychiatric hospitals a total of eight times. Every time, their solution to my problems was to put me on more antidepressants and old school antipsychotics like Risperdal and Haldol. Risperdal helped my symptoms a bit, but made me sleep more than ever, and I begged my doctor to take me off of it. Haldol I was on for several years to little effect, until I developed tremors and had to be taken off of it.

I came to perceive myself as untreatable, as someone who, no matter how hard I tried, was just impossible to help. No one seemed able to understand why I would suddenly want to kill myself, and why hours later I’d have no desire to die, but instead to eat everything in sight. No one understood why for a month I’d not want to get out of bed and then suddenly I’d start spending all my money on art supplies for projects I’d come up with at one in the morning. Everyone was at a loss, and I just thought I was a hopeless mess.

Looking back at all of this, it’s clear to me that I had bipolar disorder, but hindsight is 20/20. What frustrates me is the fact that one single element, the fact that I could sleep during manias, was so important to diagnosis, that I was rendered undiagnosable and thus untreatable. Now, my doctors understand that I have narcolepsy and I can, in fact, sleep most times, regardless, and that the intense difference in the amount of sleep is notable, especially in someone with untreated narcolepsy.

I’m finally on the pathway to getting treatment both for bipolar disorder and for narcolepsy, and hopefully they will both be effective quickly, although neurological and especially psychological treatments tend to take time to work out the fine details. I’m hopeful. I feel like we are finally on a path to understanding what is going on with me. I feel like I am finally treatable, and that it really is worth the effort in the end.

Mara Passio

Myself and mirror-man

I’ve been submerged in autistic culture for a little over a year now, and one of the things that seems very integral to the current autistic pride/advocacy movement is identity first language.

I have slowly stepped into the narcolepsy community, and it is a world of difference. The official abbreviation from what I can tell is PWN, short for person with narcolepsy. This is a foreign concept in a lot of ways. I would never say “I have autism,” I would say “I am autistic.” But in this community, I get the feeling to say “I am narcoleptic” would be a misstep.

So to fit into both of these circles, I would describe myself as an autistic person with narcolepsy.

I have decided to muse a bit on why I think these differences have arisen, based entirely on personal experience of both community and personal disability.

Autism is, in my mind (and the minds of most autistic people I’ve met), at the least personality trait and at the most the defining aspect of one’s personality. The vast majority of people in the autistic community view therapies and treatments to “fix” autistic traits as misguided at best and abusive at worst. It is a neurological trait, and a disabling one in many ways, but disabling because the world is not made for us, not because we are not made for the world. The general attitude around being “out” as autistic is that there should be no shame surrounding autism, and that if anything, autistic pride is a goal.

In contrast, narcolepsy seems to be very separate from who I am as a person. If anything, it makes me feel more and more distant from myself. Before I figured out I had narcolepsy, I thought I was simply losing myself more and more and that I would never find myself again. Now I am regaining myself as I struggling to cope with narcolepsy.

And that is the difference, in many ways: one copes with narcolepsy, whereas one lives with autism. Narcolepsy feels incredibly physical, the heaviness in the body, the sleep, even the hallucinations feel so physical. It’s a neurological trait but it is a bodily fight. It is disabling because narcolepsy is not made for this world.

My experience of autism has made me feel more at one with myself, whereas my experience of narcolepsy has left me fragmented, separating my mind from my body, and my mind is organized as poorly as dreams. My autistic brain can’t stand it, and the push and pull makes me feel insane.

I believe autism is an identity because autism is a form of life, making it better and worse in different ways than allistics experience it. I believe narcolepsy is a disorder, something people have, because in its raw form, it primarily makes life worse.

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

We fray into the future

I don’t remember 2015 very well.

My first impulse is to go through each solitary memory individually, and reflect upon it, as they are sparse enough that I would be able to do so in one writing, but I realized upon attempt that this was simply grasping at random memories trying to make sense of the whole, instead of attempting to look at the whole and make sense of it as it is.

The year 2015 was a year of letting go, and a year of learning hard lessons.

In winter I let go of the kink scene in Chicago. It had become the most toxic thing in my life, and I had clung to it until my body literally would not allow me. I spent the majority of winter recovering from knee surgery, slowly progressing from a wheel chair, to a walker, to a cane, to walking unaided. I surprised even myself by weaning myself off of the narcotic pain medications long before I ran out, and relying only on anti-inflammatory medications throughout the vast majority of my recovery.

In the spring I muddled through my last semester at SAIC. It was complicated, to say the least. As it turns out I had been struggling for the past several years with undiagnosed narcolepsy, and this year I was in a capstone class that I desperately wanted to succeed in. It seemed, to my dismay, that the harder I worked, the more I slept. It became this vicious cycle of working throughout the week and then sleeping through class, or sleeping through the week in order to make it to class. Similar things were happening with my performance class, only in a lot of ways worse on two fronts: the work was physically demanding, and I had my job immediately afterwards. Now, the work being physically demanding actually helped me stay awake during the class, but having my job immediately afterwards made it nearly impossible for me to succeed at both simultaneously. I ended up leaving that job quite suddenly, after having been one of their star employees for four years.

I managed to walk at graduation at SAIC with 3 credits left to complete. This was the plan; I was going to take an additional art history over the summer to complete my credits and then I would receive my BFA. I gladly signed up for an online art history class at my community college, along with an accounting class, my backup plan.

Over the summer one of my closest friends, who would become my boyfriend, moved in with me. He had always challenged me, but now, in close quarters, he seemed to notice everything that wasn’t working, and challenged me to change it. Soon after he moved in, I started on a new medication, which vastly improved my mental health. It was like night and day. I was still tired all the time, but I was motivated, and happy.

As it turned out, SAIC decided to reduce the number of required credit hours, and so I ended up not needing to take the art history class, and I retroactively graduated.

I found a job at Goodwill. I won’t go in-depth about that except that it was a bad experience, and their attitude changed towards me instantly the moment I asked them for an accommodation for my knee injury. I worked there for a total of two weeks, and then was put on a leave of absence.

Soon after I started working at Petco, and while it was hard work, I loved it there. I wasn’t good at it at first, but I learned and I made good friends and I respected everyone who worked there.

In early fall, my boyfriend moved back with his family in Virginia, so he could finish his schoolwork without the pressure of job hunting and rent.

I don’t remember the fall very well at all to be honest. It basically consisted of medical issues and me failing to take care of myself until I absolutely had to. Most of what I do remember is because I wrote it down as it was happening.

I was constantly re-injuring my knee, to the point that popping and sudden pain became familiar parts of my week. I started seeing a pain specialist for my back pain, an issue that had been affecting me for over ten years. I finally had an MRI done, something all my other doctors had refused to do, and they found osteoarthritis and bone spurs in my back. They gave me several injections in my back and hips along with several sessions of radiofrequency ablation to help manage the pain. Usually I’d go straight from a doctor’s appointment where I’d had my nerves literally killed with heat to go work for an 8-hour shift on my feet. My narcolepsy hadn’t gone away either. It was easier because I was active most of the day, but whenever I got really stressed out, I would start to lose my muscle strength, and felt the need to sit down suddenly, like my legs would give out. Sometimes I even felt like I’d fall asleep if I was really stressed. I thought I was on the verge of passing out, but it turns out it was something much more complicated.

My boyfriend was constantly pushing me to take better care of myself. I just never seemed ready to listen, or didn’t think it was possible to both take care of myself and do my job.

I brought my beautiful ferrets into my life, their names are Briar, Larkspur, and Iris. They are a big handful, and I adore them. I treasure every second with them.

Eventually I quit my job at Petco, finding another job quickly in the two weeks that I had given notice. This new job was seated, on the phone, everything I preferred to do about Petco with none of the physical demands that were injuring me constantly. I still work there now, and I still enjoy it.

Over the last few weeks of 2015, I was given a preliminary diagnosis of narcolepsy, with more definitive diagnosis coming up on January 15th. Since then I’ve been doing a lot of research into it and it’s like seeing myself described by someone else when I read the description of narcolepsy.

I haven’t made photographic artwork since I graduated SAIC, and that has been a major source of frustration for me this past year, but I see myself using my experience of health as a major source of inspiration for future work. My main goal for 2016 is to take care of myself, wholly. And that means taking care of my physical health, which is most pressing, but also taking care of my spiritual health by making art, and continuing to maintain my mental health that I’ve worked so hard for these past seven years.

Mara Passio