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

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

You’ll be thinking of me

Today, a close friend of mine made a post about a comment I made to her that really made an impact, and I thought I’d write a bit more about it at length.

What I had mentioned to her was a concept called forced intimacy. This is a type of manipulation where an acquaintance shares very intimate information with another person in order to create a false sense of closeness, usually soon after meeting. After sharing said information, the acquaintance then proceeds to expect said closeness to be reciprocated, either with personal information shared or with emotional support from the other party.

These situations usually feel uncomfortable for the individual being manipulated, as they feel that they have not established this intimacy through the time and effort that usually is required for that level of sharing/support/etc. and yet they feel guilt because they now feel obligated to respond by the other person’s vulnerability. This is exactly how the person who overshares wants them to feel. What then proceeds from such relationships is often a highly intense relationship that is not based on trust or common bond, but rather on heightened emotions, requiring every interaction to have high intensity in order to be maintained.

I’ll give an example of an experience that I went through recently, where I encountered forced intimacy:

I went to a support group for one of my disabilities, and afterwards, an individual caught up with me afterwards, alone, and started chatting with me about some things I had said in said support group, including the fact that I am autistic and bipolar. They then proceeded to tell me at length about how they had supported a past partner through grad school, who then proceeded to leave them after graduation. They told me about how this partner had bipolar disorder, and told me at length about the partner’s mental health issues. At several points I tried to cut the conversation short, asked no questions, and only gave noncommittal responses.

Eventually this person, after sharing with me for over an hour, switched the conversation over to attempting to extract information from me, about my dating life, about my diagnoses, about my treatment, etc. At this point, I did manage to extract myself, but this person did follow me and continued talking at me until I reached my car, at which point I finally made my escape.

Now, I had done, to my knowledge, nothing to indicate that I had any interest in having a conversation with this person besides perhaps a polite smile and nod, and had not directly spoken to them during the meeting. They had likely chosen me because I was new, and thus likely looking for connections.

Now, let me be clear, I have no idea whether this person did these things understanding what they were doing, or whether they were behaving manipulatively out of habit, as so many of us do. Many people, especially those with mental health issues, behave in manipulative ways in order to get the support they need because they have learned that is the only way that they can acquire it (at least in the form they want, which may be via friends, and not therapists).

I am by no means saying that all manipulators are people who are social puppeteers who know exactly what they are doing when they are doing it and have some big end game in mind; in fact, I would say the majority of manipulators are the exact opposite of this. I would say most manipulators know what they want for the next few steps; they know how to get from Point A to Point B. But this sort of manipulation is still unhealthy at best and abusive at worst.

Becoming aware of manipulative behaviors is an incredibly eye-opening experience, and coming to understand that we all, in fact, behave manipulatively at points has motivated me to become a more genuine person. As much as I may seem to others to be mistrusting or cynical, I believe that learning to see manipulation as it is and to learn not to respond to it, and, in fact, to reject and avoid it, will not only improve my quality of life, but will encourage others to learn to behave in ways that are less manipulative and more genuine in order to get what they want from me.

Mara Passio

Ah, what then?

The last hospital I spent time inpatient at treated all of their patients with significantly more dignity, allowing us to shower in our own bathrooms, for example. The biggest difference for me is that the other hospitals used eating with the group as a privilege, and if you didn’t attend therapy or misbehaved you’d have to eat in your room. The last hospital did not use food or social interaction as a reward or punishment in any way. The therapists also just spent time with the patients, instead of interacting with the patients solely in therapy settings. When we’d be between therapies, we would all be in the group area, and there would be two or three therapists in there interacting with us and treating us like human beings. That never happened at the other hospitals. These are all important factors in making patients feel that they are valued, and that they have agency in their recovery.

In a treatment style that, quite honestly, has very little to do with what the patient wants, as psychiatry often does – especially for patients who are ill enough to need to be inpatient – the most important factor in making sure that patients recover is to teach them how to have agency in their recovery. Psychiatry often takes away a patient’s agency, but that is the opposite of helpful. Yes, sometimes people go kicking and screaming inpatient, but once they’re there, they should have a say in how they’re treated. They should not be manipulated or forced into treatments they do not understand or want unless there is absolute necessity, and what goes behind that judgment call that is far too poorly developed.

Patients are often called on to make medical decisions for themselves while they are heavily medicated and unable to understand what they are being told; it’s happened to me. I’ve been given PRNs when I wasn’t asked for consent until the medication had already been drawn into the needle and they were prepping my arm – and when I said no, I was treated as if I had done something wrong. I’ve consented to an injection of Haldol that resulted in horrific side effects for five days afterwards – because I was explicitly told it would not cause side effects.

In my various other treatments, I’ve generally been presented with at least two different treatment options, given the pros and cons of each, given general advice, and then I was called upon to make the final decision. I have never experienced such a phenomenon in psychiatry. With psychiatry, I am evaluated, given a prescription for a medication that is often not explained to me at all, and sent on my way. The only discussion is of symptoms, not of solutions. I am deemed incapable of making such a determination myself, but why is that? It is because I have been intentionally under-educated on the topic of medication management, in a way that is simply not standard in any other field. Whenever I have wanted to even find out about the intended effects of a medication I am on, I have generally been forced to seek out answers on the internet, not from my doctors.

Giving patients agency and treating their decisions with respect is a basic human right. Beyond that, it is good treatment policy. It will help patients recover. Patients that take an active part in their recovery are more likely to stay recovered. Patients who feel that they have a responsibility to care for their own well-being, that what happens to them is a direct result of how they behave, will make more healthy choices.

I do not trust the psychiatric community as a whole because I do not believe that the general psychiatric community has the understanding or the desire (or both) to effectively treat patients who are viewed as having severe mental health problems. I believe that these patients are viewed as hopeless cases and are often viewed as incapable of caring for themselves. But the truth is that they have been taught not to care or themselves by the very culture of the psychiatric community that is supposed to be helping them. They have been taught that they are not responsible for their behaviors. They have been taught that they have no control over themselves. They have been taught that they are powerless. Because the system makes them powerless, over and over again, and tells them it’s what’s best.

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