Although we’re apart, you’re a part of my heart

Long after he left me for good, I’ve spoken with him. I’ve cried on his shoulder, long after I knew that would never happen again. I’ve lain in bed with him in a home he never entered.

These visions became a torment I did not understand. I called them flashbacks. But I was not reliving traumas, not exactly. I was living new traumas, or new versions of old traumas, and I didn’t understand how it could be possible.

I began to fear the space between sleep and wake. A space I didn’t realize not everyone even experienced. Before and after sleep I’d lay my head on his shoulder again and listen to the horrible things he thought of me. As I’d slowly fade into full sleep, I’d absorb his words and feel his chest rising and falling under my cheek.

Sometimes even I wouldn’t realize I was in the space between. I’d have terror-filled visions on my commute home of him getting on the train and casually standing beside me, ignoring me but invading my safety nonetheless.

When I consider my recovery from the gaslighting I experienced at his hands, I think – I know – that these unwelcome visions just furthered the gaslighting for me. The purpose of gaslighting is to convince the victim that they are insane, and I truly believed that, if I hadn’t been insane before I met him, I was absolutely insane after. I believed he had caused me to detach from reality.

Thinking about these times makes me so angry. I think about how, if I had only known that I had narcolepsy, if Ihad only known, I might have been able to make peace with these horrific visions. At least I would have known that he had not succeeded in driving me mad. It would have helped to know that what I was experiencing was not a result of anything he’d done to me, but a result of a neurological condition. Sure, I was probably hallucinating him in particular due to PTSD from the abuse at his hands, but the hallucinations themselves were not caused by his torment.

I fear constantly, though, to this day, that I will be visited by him again. I still see him, on occasion. I still fall asleep sometimes convinced I am wrapped in his arms. Sometimes I myself can’t tell the difference between a flashback and a hallucination, because sometimes I can’t remember if something had happened before or not. Narcolepsy has blurred the lines of reality in my post-traumatic stress disorder, and that is a terrifying fact to behold.

I don’t know if I’ll ever have a life where I know I’ll never see him again, even in my dreams. On a level I am resigned to it, and on another level, I am angry, incredibly angry, and afraid. I feel helpless against the half-sleeping dreams that plague me, and I do not know if I will ever be free.

Mara Passio

Smiles await you when you rise

This is a response to: http://www.lifenews.com/2015/11/12/why-disabled-people-like-me-fear-assisted-suicide-and-euthanasia/

I’ve always been a staunch activist for assisted suicide. I believed aggressively that assisted suicide should be available to pretty much anyone who is of sound mind to choose it.

This article made me question some of those things.

I wondered, for example, if my grandmother, who I think would have chosen assisted suicide, would have been “of sound mind” by the time she got to the point that she desired that option.

I wonder if I could ever choose that option and be of sound mind.

I remember when I was 16 and my grandmother was dying, she couldn’t remember who her children or grandchildren were, and she was in excruciating pain. I said to my sister that if I ever got like that I would hope someone would kill me.

I wonder, now, if I had known how my body would feel at age 24, if I would have wanted someone to kill me now. Right now I don’t want to die, despite the pain I’m in on a constant basis. Despite the neurological and psychological difficulties I face on a daily basis. But if I could have requested suicide in advance, would I have, knowing my current situation in advance?

Another question that plagues me, is what would have happened if I was so disabled and I was not in as supportive of a family. Would I be more likely to choose assisted suicide, or worse, be seen as a burden by a less-supportive family or system and coerced into suicide? These are things I never considered when I first made my pro-assisted suicide stance.

I believe, for example, that my grandmother should have been able to make the choice whether or not to receive assisted suicide. However she had Alzheimer’s, and I don’t know if she would have been considered of sound mind, and whether she should have been. I don’t believe my family capable of coercing her into such a thing, but how are medical professionals supposed to determine that?

I wish I knew more about how medical professionals determine whether someone is being coerced into a treatment, as this is a venue in which I feel under-educated. It may very well be that there are not a lot of stop-gaps in place to avoid coercion, but if so, then this is a much wider problem than just assisted suicide. How does one determine if a person is being given or, alternatively, refusing life-saving treatment due to the will of an influential family member? These are issues I have never considered and I grow increasingly worried about as my own health deteriorates and as I become more concerned with disability issues.

Mara Passio

Heavy thoughts tonight and they aren’t of Snow White

This a non-narcolepsy post and is a response to:  http://nytlive.nytimes.com/womenintheworld/2015/11/10/the-righteous-rage-of-margaret-cho/

My philosophy is, “murder the rapist in your mind so you stop killing yourself.” I’ve seen, in my lifetime, that sexual abuse has turned into self-abuse. When I kill the rapist inside of me, I will stop killing myself.

I want to murder my abuser. I want to cleanse myself of him. I’ve never been the kind of person to fantasize about harming another person, and I’ve never gotten to the point where I thought about how I would kill my abuser. If I could wish upon him a heart attack, though, I would in an instant. Without hesitation.

I’ve never viewed it before as him being inside me though. I’ve always viewed it as him being an outside force that is just constantly present around me, suffocating me, like a bag over my head. But when I look at what she writes, I realize he is inside me, because I let him in, over a year ago, and I want him to die because I’d rid myself of his influence.

I recently started thinking about moving to a new city, and I still think it’s a good idea, but part of the reason I wanted to, was to escape him, escape the memories and the fear and the possibility of meeting someone who knows someone who knows someone who knows him. I want to exterminate him from my life because I cannot exterminate him from the planet.

In the video, there’s a group of girls and women who are learning to fight and are chasing down their rapist. I want a team. I want a team of powerful women who’ve survived hells like mine and who can teach me how to survive. I feel like, despite my many traumas, I am still a novice survivor. More victim.

I am killing myself with self-abuse and neglect. I don’t consider myself worth caring for because he didn’t consider me worth caring about. I need to destroy the abuserv that has remained in my head, that I didn’t even realize was there. I need to destroy my abuser turned inward. I need to take my bag off of my own head.

Mara Passio

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

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