10 Minutes

I am disappearing into my chest cavity.
I say it feels safe there, but really it just feels lonely.
Lonely is what I think I deserve.
My body is a disaster zone, alarms ringing
Was it five? -No it was six ER visits this year.
I’ve only had surgery once.
This year.
My bracelet reads
NARCOLEPSY/CATAPLEXY
DIABETES TYPE 2
It deadnames me and gives my mother’s cellphone.
I’m too sick to be queer.
At the apex of mind, body, spirit,
My life has narrowed.
Food, sleep, meds.
Queer doesn’t matter if I can’t make myself eat.
For 10 minutes I lay in bed listening to my alarm
Begging my body to move
I would’ve seemed peaceful
Deep asleep
This body that refused to represent who I am, even in waking.
It’s more than disconnect. It’s distrust.
I am disappearing into my chest cavity.
I say it feels safe there, but I really hate it there.
It’s force of habit that leads me down this road.
My body is a war zone,
between what is and what I want it to be.
My rage has not fully quelled, but softened.
I might yet emerge to find myself fully alive.
Queer, even. Queer and Sick.
Mara Passio
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What can you receive from me?

I went to an event recently where the following question was posed:

Are you a giver or a receiver?

I was impressed with the language of the question. To discard “taker” and to replace it with “receiver” was, to me, brilliant, as it took away so much of the charged morality around the idea of “taking.”

Yet I still felt a jab of shame when I answered that I was a receiver.

Throughout the event I felt myself on the precipice of an understanding that felt huge and yet almost too much to handle. I felt so much an outsider to the experiences and anecdotes of the other individuals in the room with me, because, I eventually realized, their definition of giving and receiving wasn’t quite the same as mine was.

I’ve always viewed myself as a draining individual. I am bipolar and autistic, and I often have an intense emotional energy, which can take a toll on those around me. I am also chronically ill and often require assistance or accommodation that can be taxing, either physically to provide or emotionally to witness. I tend also to be a financial burden, as my disabilities limit the work I can do and thus my income, and so my monetary provisions are often fulfilled by my family. I try to counteract these tolls and taxes and burdens whenever possible by asking for as little as I can afford to.

This extends to things I need, such as doctors appointments and accommodations, I will push through things I shouldn’t, simply out of a desire not to burden someone else with my problems. Many of the times I’ve harmed myself in the past, it was because I felt that asking for help would be too taxing for my friends or family.

This was the level to which I understood that I resist receiving, before I entered this event. What I realized while I was there, was that I have an even stronger resistance to receiving things I want but do not, in my judgment, need.

The most glaring space in which I do this is my relationship with my boyfriend. I have, until now, refused to tell him what I want out of our relationship, opting instead to tell him that whatever makes him happy will make me happy. This has lead to a lot of frustration on both sides, as he tries to lead our relationship half-blind and I try to get my needs met without saying what they are.

So when I went to this event, I realized that the common definitions of giving and receiving were much more broad, to include both needs and wants. A child needs to be cared for and wants to be taught to sing. Providing for these two things would both be considered giving. Having them provided would both be considered receiving.

Something I also noticed was that the common definitions of giving and receiving were much less about obligation and much more about desire. Of course, there is a lot of giving and receiving that is based at least partially in obligation, for example caring for children and going to work, but rarely, it seems is it solely obligation that motivates someone’s giving. There is always desire to give.

When I reflect on this, I think, of course, when I give, I always have the desire to do so, at least in part. When I give my employer my time and energy, I do so out of, yes, obligation because I have committed to do the work and I need the money, but also out of the desire to be productive and to earn the respect of my employer. When I give my friends advice, I do so completely out of a desire to connect to them and a desire for them to be happy and healthy.

Generally the argument is that a balance between giving and receiving is ideal, and I would agree that for those who are healthy, it likely is the best choice. I consider, though, that there are those who do not have the option to give as much as they receive.

For many chronically ill and the disabled, giving as much as one receives is an inconceivable task. Even if one pares down what one receives to the bare minimum, as I attempted to do so, it may yet be impossible, and due to that reduction, one may not have the energy to provide anything to anyone else, regardless of desire.

I would argue that for the chronically ill, a different type of balance must be struck. It is the kind of balance between one’s own quality of life and the quality of life of one’s loved ones. A chronically ill person still has the right to want things, to have passions and interests. Often this is forgotten. Chronically ill individuals are so often viewed as taking up so much energy already that they shouldn’t get to take up more energy doing frivolous things. But they have every right to do things that are just fun or interesting or exciting.  However, their right to these things does not reach any further than their loved ones rights to those same things. I am not advocating that a caretaker give up all of their interests in order to accommodate a chronically ill person’s every fleeting passion.

I found myself, as a disabled person, forgetting sometimes that I am a person. With all the taxes and tolls and burdens I place on others, I started to see myself as simply a weight to be carried. Because I refused to ask for things I wanted, I never had enjoyable experiences, only survivable ones. And I never had the opportunity to have positive shared experiences with where others offered something generous to me. I lost track of who I was, and how I related to others.

I also lost track of the fact that I do, in fact, give. I may not give as much as an abled person does, but I do give what I can, when I can, and joyfully. I do not hoard my resources, receive only to never give any away. I can be a giver, too.

I am still trying to find the balance in my life, between asking for what I need and for what I want, and for giving enough in return. I am still terrified of asking. I am still learning to advocate for myself as a disabled person, to say that I deserve more than survival. I deserve joy. We all deserve joy.

Mara Passio

We live in deeds, not years; in thoughts, not breaths

There’s a version of me that only exists in past tense. I think that’s true for everyone, but I realized recently that the difference is much more stark within me than it is within many. My past tense is a stranger towards whom I reach, simultaneously trying to pull inwards and push away. The realization that I cannot become who I once was is viciously painful. Sometimes I wish to forget that I have a past tense, as I realize more and more that the virtues I hold dear were stronger in me past tense.

There’s a version of me that only exists in the present tense. I came to the realization that I do not like who I am, present tense. And I have not liked who I am in the present tense for a while. This is not a new realization; it’s one I come to every few weeks, and I make changes and hope for the best and those changes stick or they don’t and I still don’t like myself present tense.

There’s a version of me that only exists in future tense. I’m not sure this is true for everyone, but it’s true for me, and it seems that my future tense is so wildly separate from my present tense that it could be a whole different person. My future tense has all of my emotional and physical limitations, but none of the character flaws. When building my future tense I didn’t plan to continue being unhappy with who I am.

I don’t believe I can reach my future tense until I become happy with who I am present tense, but I do not believe that has to or should involve giving up my values in order to find peace with my faults that I find intolerable and unethical. I also have come to the painful but necessary realization that the flaws I dislike about myself, others dislike about me as well.

I have become my illnesses. I have become narcolepsy. I have become bipolar disorder. I have become arthritis. I have become chronic pain. I have become post-traumatic stress disorder. I have become sickness. My personality is Unwell. And I am not proud. I am utterly ashamed.

I try to have empathy with myself, to realize that my life for the past few years has been a barrage of injury and illness. And on a level, I do understand that there is a reason I became the way I am. What that does not mean, however, is that I am excused to continue dwelling in despondent self-loathing. I am no longer excused from trying. And I don’t just mean trying on my own behalf. Trying means working to understand others. Trying means cooperation. Trying means being willing to be uncomfortable. And on a larger scale, trying means trying to work to improve the world as I see myself capable.

To be clear, I do not seek to divorce myself from my body, or from my illnesses. What I do seek is to divorce myself from the idea that my illnesses culminate into the total of my self. I have chronic illness, and I cannot and will not act otherwise. However, I am also a human being outside and alongside my illness, and these aspects of my self require time and space to thrive.

My future tense is a very long way away, and to be honest, I will always have some of my character flaws, although they may be smaller, more manageable shadows of the hulking barriers I currently have. Eventually though, my future tense may become my present tense. And in my future tense, I like myself uncompromising. If none of the rest of my future tense becomes my present tense, I dearly hope that I can one day like myself, present tense.

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

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