There Might Not Be a Reason

December 13, 2017 § 2 Comments

NeuroFly

Something I’ve been thinking about a lot lately is the difference in levels of understanding of and sympathy for mental illness when it’s understood as the result of trauma (personal or historical) versus when there’s no real reason–or when the reason is simply physical or psychological variation we don’t fully understand yet, something captured well in the concept of neurodivergence.

In those latter cases, of which I am one—to quote Lady Gaga, I was born this way, hey—mental illness still carries the very deeply and unconsciously held stigma of being “a personal, moral failing that no amount of psychiatric care can alleviate,” as Angelica Jade Bastién writes of her own worst fears about her bipolar, “a dark mark that can’t be hidden or scrubbed away no matter how hard you try.”

This is literally the meaning of stigma—a socially-imposed, outer mark of internal or essential wrongness or badness or exclusion, a scarlet letter. Bastién’s words remind me of my childhood and adolescent sense that my neurodivergence was somehow visible for all to see, inscribed on my body or undeniably present in the weirdness of my habits or clothes or hair. Only recently have I realized that this experience was not simply social anxiety, but rather a nascent awareness of the real difference within me, and of the real social judgment placed on those who are different for no reason.

For instance: earlier this year, I had a conversation at work with a volunteer about her long career as a nurse. We were making chit chat, and I asked how she met her husband. She responded that he had once worked as a social worker, and that they met when they were both working at the same facility, which provided mental health treatment for youth.

“So many kids there, their stories were just terrible–they were there because they had been badly abused, and you felt so bad. But then with some of them, there was nothing wrong, nothing that had happened–like this one girl, she had schizophrenia, and she was just, you know…”

Here her voice drops down to a whisper, like it’s a dirty secret. “…crazy.” 

I don’t write this to criticize this woman, who I think is a good and kind-hearted person. If I had said something—which I didn’t, because I needed time to think about what she said and how I felt about it—she would have reflected on her words and assumptions and probably tried to change them, I think. So the point is not about calling out any particular individual.

The point is to bring attention to the reality that, in a moment when the move to destigmatize mental illness has gained popular traction, when it has become more okay to be out about having mental illness, we see at the same time an impulse to cleave those who experience it into deserving and undeserving groups—those who understandably and for legitimate reasons developed mental illness and those who are just, you know…crazy. 

The irony is that, in failing to recognize that not all mental illness is caused by trauma, that some mental illness is simply neurodivergence, we also fail to recognize how our attitudes about mental illness might create trauma for those who live with it. Trauma does not only cause mental illness; sometimes it is the effect of how we understand and respond to mental illness socially and politically.

We can easily recognize and sympathize with those who developed mental illness as a result of unequal distributions of power—as the outcome of abuse or oppression or injustice. It’s a much harder thing to challenge the ways we continue to internalize views of non-trauma-based mental illness as absolute otherness, as craziness—which also reflect unequal distributions of power.

 

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appointment

November 11, 2017 § Leave a comment

i remember the way limbs would twitch

while falling asleep

from the time before

on lithium. not my limbs or

my bloodstream or my

bipolar this time but

those of the one

i sleep beside / and what does it mean

does it make a difference

whether he calls me girlfriend

or partner or wife,

girlfriend

is how he introduced me this time

to the PA at the appointment

at the office where i went

for awhile

after the hospital

but stopped

because you never saw

the actual doctor, only

the PA–why? and where

 
i had to be

just a little bit

of a bitch, i had to go to

bat, be all

so have you heard

of such and such research

on light therapy–is that an option?

and, i know latuda

is good for bipolar depression

specifically, and three years ago

it wasn’t generic yet; is it now?

 
because

i hate it when doctors

don’t explain the shit

they really should, when

they lack imagination

to suggest other options,

new things you might not

have thought of yourself

when suicidally depressed.

i hate it when doctors

don’t ask you the questions

you might not have known

to ask yourself

because you cannot

advocate for yourself or even

take yourself to the doctor

when it’s actually

an emergency,

you have to be dragged there

against a brain screaming constantly

for death–

 
not my brain this time, no,

by the grace of god but how

do you think

i would know otherwise

what a doctor should be asking

but isn’t

bipolar marrying bipolar people

October 17, 2015 § Leave a comment

i’ve been thinking about this a lot since my partner and i are considering having a child. i really want another child, but i’m terrified by the prospect of what his genes and mine together might produce. something like a 27% chance of the child having bipolar, and an increased risk as well for schizophrenia and autism. i love my life and i don’t regret being alive or being brought into the world. i wouldn’t say that suffering has outweighed meaning or purpose or creativity or joy or beauty. and i don’t believe for a second that people like me, like us, shouldn’t be in the world. but i worry about knowingly handing my child the suffering of suicidal depression, the chaos of mania, the disabling dread of anxiety, the terror of psychosis.

anyway, thinking about that has got me wondering whether bipolar people attract each other, and what the nature of that attraction is.  « Read the rest of this entry »

Thanks Kid Cudi

April 4, 2015 § Leave a comment

the two years i was up in the midwest, teaching at a university there on a postdoc, i was frequently so sad that i wanted to die.  i was able to keep functioning–getting myself to campus, showing up to teach class and hold office hours, taking care of my daughter–but only barely. the threat of total breakdown was constant and real, pushing up beneath the thin surface of my game face.

it’s hard to articulate the nature of that kind of pain, to give words to what that experience feels like. i can tell you that i cried every day: i woke up and cried until i went to work; i came home from work and cried again. on some nights when my three year old daughter was with me, i felt so incapable of meeting her demand for engagement that the best i could do was lay beside her on the couch as i let her watch her favorite movie at the time–Charlotte’s Web–over and over again. the nights her dad would pick her up from my house, i would collapse from the relief of not needing to pretend i was okay. i felt absolutely left alone in a grief that seemed bottomless. i longed for someone who would recognize my suffering and hold me, shelter me, take care of me.

i remember only a few things breaking up that experience of abandonment. once i found myself alone with an activist acquaintance in the endangered wakarusa wetlands–we were the only two people who showed up to a meeting to plan construction of a boardwalk over the wetlands, a desperate effort to preserve them from destruction. it was january in kansas. the water was frozen white and the wind blew itself hoarse across the marsh reeds and grasses. with no meeting to hold, we walked aimlessly together through the wetlands, beneath the slate grey tumult of a cloudy sky already growing dark at 4pm. he pointed out to me where the boardwalk would start and where it would end. finally i confessed to him that i had been so low i didn’t know how to continue. i may have mentioned why, but the depth of my pain was so great that i probably didn’t try to explain in any great detail.

but he told me he had been depressed too. he had fallen in love with someone, a friend, and they had started seeing each other secretly. she had a boyfriend and a small child; her boyfriend was a friend. had been. he’d found them out and then it became impossible for them to continue seeing one another.  so now he could only ache for her, for what was lost and what was impossible.

the only thing that makes it better is that i feel like i learned some things, he said.

what did you learn?

that i am capable of connecting with someone in that way, he said. i wasn’t sure if i was. but because i know now that it’s happened before, i know it can happen again.

the point here is not actually that lesson but just to remember with gratitude, for what helped me feel just a little better, a little less alone, for a little while.

***

one of the other things that lifted–not my depression, but my loneliness, my sense of abandonment–was an album i listened to almost every day as i walked to campus, kid cudi’s “man on the moon.” the way he talked about his own experience in “soundtrack 2 my life”

i’ve got some issues that nobody can see

and all of these emotions are pouring out of me

–felt absolutely identical to my own. and when in “heart of a lion” he sang

at the end of the day, day

my mama said

don’t let no one break me

let no one break me

at the end of the day, day

nobody ever could stop me

ever could stop me

at the end of the day, day

you can’t regret it

if you were trying

if you were trying

at the end of the day, day

i’m walking with

the heart of a lion

heart of a lion

when he sang that i felt my suffering understood and redeemed; i felt dignity was possible even in the face of breakdown. that despair might be transformed not to hope, but to courage and determination, to power and survival.

***

all of that is a very long prelude to what i ultimately wanted to write about, which is that i listened to “man on the moon” again today for the first time in awhile–from a vantage point of stability this time, fortunately–and was still struck by how well he captures the experience of a profound sadness that is only heightened by an accompanying terror of insanity, breakdown, failure.

it made me wonder about him, whether he’s like me and g and people like us–so i googled “kid cudi depression” and felt vindicated to find this article.

glad to see he’s doing the coming out thing. and like the brief flash of understanding that broke up the dark cold of a kansas january for just a few minutes, i’m grateful for the presence and companionship of his work as i struggled just to put one foot in front of the other, knowing that if i didn’t i would fall to the ground forever, unable to get up.

sounds dramatic, but that’s what it was like.

a dream, some thoughts

January 4, 2015 § Leave a comment

had a dream last night that the demographics of district 9 (one of the historically affluent white northside districts) had changed, and that they elected a woman with bipolar to city council. when questioned by skeptical media commentators as to whether she could effectively do the job, she responded with confidence: of course she could; the only difference was that when she became overwhelmed, she needed to take breaks. but that was all.

when i read that, i felt vindicated, because i knew my old boss was reading the same news account and consequently would see that, insofar as this councilwoman’s experience was exactly the same as mine, my requests for accommodation were valid.

hey, but does anyone who’s been diagnosed bipolar question the diagnosis when they’re not in an episode? when i’m functioning well, i can’t imagine having ever functioned poorly or that i’ll ever function poorly again. and when i’m functioning poorly, i can’t imagine a way out. each experience is completely incomprehensible to the other.

yeah, right now, in a non-elevated state–and those states feel so infrequent and so incomprehensible–tho i guess i have had two in the past 5 years–but yeah, right now, i’m feeling like the more accurate diagnoses are “anxiety” and “borderline” (which really just feels like attachment difficulties or maladaptive defenses that formed secondary to a primary, probably biophysical anxiety condition). because i have those experiences so much more frequently than elevated states. and because i never have depression or self-injuring impulses outside of intense relationship anxieties. and because the two diagnoses have a lot of overlap and are frequently mistaken for the other. and because my anxiety seems impervious to the mood stabilizers i started taking after the bipolar diagnosis. and because i don’t actually feel anything on a mood stabilizer–tho i can’t tell if not feeling anything is testament to the effectiveness of the meds. like, would i be feeling something i’m not if i weren’t taking it?

but when i have been elevated, it does feel different than any other set of experiences i’ve had. it’s not anxiety, not depression. elevation feels unfamiliar, relatively, compared to the duration of time i’ve lived with other symptoms (all my life, pretty much). what it feels like is anxiety ramped 10-fold or more. like a huge outpouring of energy that simultaneously drains me to the point of collapse. like i am borrowing energy on credit. like i am a conductor or channel for an electrical current whose voltage is so huge and powerful that it blows my circuits. all my metaphors are energetic, electromagnetic. it’s like the scene from the brave little toaster where lampy charges a car battery by harnessing lightning, burning himself out. coughing sparks.

brave-little-toaster-lightning-lamp

Lampy_and_lightning_by_Ominous_Impression

i can remember that experience, kind of. i remember that it’s huge and scary, but also awesome in its power and intensity. and yet i’m still like, well, maybe it was a one-time thing. maybe it was something else. i’m like, c’mon–do i really have bipolar?

i’m great at getting jobs and terrible at keeping them

November 23, 2014 § Leave a comment

i don’t know what to make of this, this pattern of selling myself well and then being unable to handle it and making an incendiary exit. one thought is that there is some core validity to my reactions–like, there really is a lot of bullshit at any job. and wage labor itself is inherently bullshit. but then, i also think that most folks have a less intense response. they have thicker skin. my propensity for intense emotional states means i’m more perceptive, more attuned to internal contradictions and dysfunctionality, but in a way that eventually becomes painful and self-jeopardizing. in most employment efforts i’ve undertaken, my pattern is to get progressively more and more stressed by bullshit and eventually unable to handle it. my mom used to roll her eyes and say, “it’s just a job,” but i knew that what i was experiencing was the reality of labor’s alienation under capitalism!! for instance. it’s always been easy for me to see the macro in the micro, the political in the personal, but also very hard for me to handle.

in some jobs, like waiting tables at denny’s or working at a dry cleaners or beauty supply shop or whatever, the bullshit curve is very very short. like 2 days to a few months max.

in other jobs, where i’m doing work that is meaningful to me, i’ve been able to function well for a time, before getting more and more distressed. in my last job, for instance, i did fine for about a year and then became increasingly anxious and overwhelmed before essentially imploding. but a lot of that was also because the organization itself was actually unhealthy (see this post).

the longest i stuck with something was the almost 8 years i was in grad school. even then, i was pretty fucking disablingly anxious ALL THE TIME. but the work rhythms of academe allowed me to manage that better than a 9-to-5. i could work when i was able and not work when i wasn’t. or, even when i was very incapacitated by anxiety or depression, i could still do my work cuz it was more solitary than public. except when it wasn’t–in which case i was having panic attacks in class. :/

but the anxiety also eased up significantly when i was done with coursework and just writing my dissertation. it was really minimal when i was dissertating and working as a research assistant rather than teaching. as an RA i had no public performance to manage. my work spoke for itself and that was enough.

but the good thing about getting older is that your patterns appear with greater clarity. and when your patterns and triggers become apparent, you can devise workarounds. so as i take a few months off from paid employment and think about what comes next for me, meanwhile trying not to internalize a view of myself as failed and incompetent, i’ve put together this list of things i’ve learned about what kind of work does and does not suit me. it’s a nice sort of balance between “i’m defective and unfit for survival” and “wage labor under capitalism is slavery” (which of course it is). anyway:

STUFF I CAN’T ABIDE FOR LONG:

–highly stressful, chaotic work environments, even if the work is meaningful

–boring and repetitive service industry jobs that feel meaningless or actively exploitative

–jobs that require extensive public performance–being socially “on” for long periods of time

–jobs with intense hours or which require relentless output without periods of rest and recuperation

–jobs with a lot of internal dysfunction or motivation through criticism and fear

–jobs that expect you to put caregiving work, health or community involvement second to productivity

THE FLIPSIDE OF THAT: STUFF I CAN DO SUSTAINABLY:

–jobs where folks are laid back and chill

–jobs where i can make my own hours and control the intensity of work flow

–jobs that allow me to balance work and caregiving responsibilities

–jobs that require lots of thinking work – the ability to focus and concentrate for long periods of time

–jobs that offer a lot of space for self-motivation and execution of long term projects

–jobs that are relatively solitary and which reward individual creativity

so, it seems like i should either go back to academia (in a more flexible adjuncting kind of capacity that allows me to do other things); look for a research job (they must be out there); figure out how to freelance the stuff i’m good at (writing, teaching, researching, community organizing); retrain for some new skill set that allows for self-employment (therapist, acupuncturist); or enhance training i already have so as to obtain more stable, reliable work (get a sociology master’s or MFA so that a community college hire is more feasible; get my alternative certification to teach high school English). but, also, i think i could still do the paid organizer/social justice nonprofit work IF the organization was internally healthy and accommodating.

Why I Had to Leave My Job

October 22, 2014 § 5 Comments

Y’all madfolks (and non-madfolk allies) might not know that in my other life–when I’m not blogging about bipolarity or whatnot–I work as a social justice organizer and community educator. Or that in my previous life I was an academic, that I came up in the academy writing about issues of embodiment and was greatly politicized there around issues of disability justice. Anyway–

I made the decision to leave my current position the other day at a community organization that does impressive and absolutely vital social justice work in my hometown. This organization is very effective in challenging the broader powers that be, but the internal dynamics are also very difficult. I’ve come to believe that this is because of the constant confrontational stance we deliberately take vis a vis power structures–we end up turning on ourselves in ways we become accustomed to position ourselves in relation to oppressive forces externally. So there’s a lot of bickering, a lot of unnecessary meanness, a lot of public scoldings. There’s also a kind of manic intensity to the work that makes it really hard to draw boundaries and take care of yourself.

Leaving was a hard decision for awhile, and for awhile I didn’t know I was even making it–I just kept hearing a little voice whispering slow down, take a break–and then, yesterday morning, it became not hard at all.

What happened was this: the past few weeks have been stressful and I started getting sick. Physically, but more problematically in terms of its disruption to my everyday functioning, mentally. I started having a lot of anxiety and then began to rev up and feel manic (er, hypomanic I guess). When that happens I don’t necessarily need to do anything more than scale things back and slow down. Reduce my stimulus. Focus on one foot after the other, cautiously. I still feel that if I had been able to just take like a month off last spring, I wouldn’t have needed to go into the hospital. But I wasn’t able to–or felt I wasn’t able to, plus I was manic so I didn’t want to stop–so I just kept getting worse and worse, and then I crashed into depression and had to take a week off anyway because I became unable to work. And at that point, I was having so many symptoms that, even with a week off, I could not put off psychiatric care even a few days, at which point I checked myself into the hospital. At that point I had just been diagnosed and was completely unmedicated, so I was desperate to see someone and get on the right meds so that I could keep going without having to break down completely. So that’s what happened last spring, and why since then I’ve been very concerned to maintain boundaries around my time–because if I get too stressed out or can’t keep a regular schedule, I start having symptoms.

Now, my boss knows about my bipolar diagnosis. I was very open with my coworkers about getting diagnosed and going to the hospital. (Though I did not tell anyone about my even more stigmatized borderline diagnosis–ha.) And I’ve had conversations with my boss about the kinds of things I need to do to maintain stability and how that affects my performance at work. So when I started having symptoms this past week, I decided that I would let people know that I needed to scale back some of what I’d been working on. What always tips us over into dysfunctionality as an organization is that the amount of programming we do is very intense–we basically have a big community event every weekend, plus long term planning for even bigger community events–and then, because we are also a social justice organization, we feel compelled to jump in as community organizers when urgent issues arise. Which they always do. And which is okay, because we care about those issues. But it’s just that little extra when we’re already at capacity that ends up making me sick.

So yesterday when I went into work, I told my boss that I had been having a lot of panic and manic energy and requested that some of the organizing work be delegated to other folks so that I could focus just on programming, thinking that if there was a more critical need it was the programming we were doing. In other words, I told her I was getting sick and asked for accommodations. She got very frustrated and irritable and scolded me by saying that if I delegated those tasks, I’d be putting more pressure on the full time workers who were already doing a million things and staying till 9pm every night etc. She granted the accommodation, telling me just to focus on the organizing work, but she also made me feel like shit in the process and implicitly suggested that it was my illness that was the problem, not the insane workload or how we divide up the labor.

(Note that “full time” at my work means available for *everything* and willing to work as much as it takes–sometimes 50-60 hours a week–to get it done. Note too that I am the ONLY worker in the organization with a child. Or a partner who also lives with psychiatric disability. And so the stakes involved in my staying stable are high.)

After this exchange, I left the building because we were asked to move our cars from the lot for other folks who needed to park there. I texted my boss that I was very upset from our conversation and that I was taking some space to cool off, would return to finish something I had left unfinished, and then leave again. I called my partner and cried. I called my mentor and cried. She told me to come over to her house right away, where she reassured me that what happened wasn’t my fault. Afterwards I went back to work and finished what I said I would finish. And then I left again.

Somewhere between work and home I came to the understanding that I’d had enough and needed to leave, and started composing a letter in my head. When I got home, I wrote it all out and sent it to all the staff members and the board of the organization. Before I paste the letter here, I should say that I’ve left other intensely stressful jobs in dramatic ways and I wonder what this means–is it part of my illness/instability, that I become so anxious that I get crazy? Or am I more attracted to crazy, high stress work environments because of my own intensity? Or is the world just generally unaccommodating to folks more vulnerable to panic and affective/energetic swings?

Anyway, here is what I wrote, with apologies for the funky formatting–for some reason when I paste text, it loses its paragraph returns:

I am writing to let everyone know that effective at the end of this month, I’ll be leaving as staff.
My reasons are simple: I am a person with a disability–albeit invisible most of the time–and find the organizational culture to be ableist (and also transphobic [I’m not trans but my friend who works there is]) in ways that are really upsetting. While we as an organization are badass and do powerful, important work in the community, the internal dynamics of the organization also feel unhealthy for me.
It’s not because I am incompetent or defective or abnormal or weak or fragile or lazy or uncommitted or don’t want to help others–that is ableist.
It’s not because I’m not up to the challenge of social justice work–that is ableist.
It’s not because needing to take care of ourselves is selfish and individualistic–that is ableist. We take care of ourselves so that we can take care of others–whether those others are children, parents, partners, or the community.
It’s not because, as someone with privileges of color and education and sexuality, I have the luxury of drawing boundaries around my time. I do have those privileges, but I draw boundaries around my time because I actually don’t have a choice. There are very real consequences for my health and for my child if I don’t draw those boundaries. Like privileges of color or gender identity or sexuality or education, there are also privileges that come from not having medical conditions or life circumstances that interfere with your ability to work all the time, even when it’s the work of social justice movement building.
It’s not because part-time workers are not doing their fair share and causing full-time workers to work too much. That pits workers against each other and undermines solidarity and teamwork, when in fact those are policy decisions outside our control as workers. Or, if they are in our control, they are collective decisions that we are all responsible for.
The deeper problem is that requiring full-time staff to work 50+ hours a week and be available at all times privileges a certain kind of ability. Who can live up to that kind of demand except someone who is able-bodied and without significant responsibilities to vulnerable others?
As I’ve learned from the disability justice movement, it is not people with disabilities who are the problem; the problem is social environments that are disablING. This is as true of social justice spaces as it is of wider society.
As [famous indigenous rights activist] told me a couple weeks ago, you need to take breaks when you need to, in order to keep going in this work. She said that when she was at the peak of [famous indigenous rights movement], she got really sick and was forced to stop for awhile. She said she was forced to take a break for a few months. And yet when we hear her speak, it seems like we only see an icon of strength and toughness and refusal to give up. We don’t see the person who gets sick and depressed, the person who wants to give up, the person who wants to do self-destructive things, and who needs to take a break so that it doesn’t get worse, so that she can keep going in a good way, coming from a place of love and healthiness. There’s no good way to talk about those kinds of things here, so we don’t learn good ways to handle that aspect of the work for ourselves or to support each other. We’re expected to keep a stiff upper lip and just keep pushing even if we’re hurting, because that proves your dedication to the community–and that’s ableist. I was so appreciative that [she] did talk about how hard it is and so appreciative that she helped me see that when I get depressed and want to give up, all I need to do is listen to myself and take a break when I need to. So that I can keep going.
So that’s what I need to to do. I feel like it’s hard for people who don’t live with (what we call) mental illness to understand, because for you it’s easy. You don’t get anxious or depressed or manic when you get stressed out–or you don’t get stressed out as easily–and you see other people who do as lazy or selfish. That’s probably just internalized stuff that I’m projecting, but that’s how it feels.
In any case, I love you all and I will always support the work [you do] in the community. I’m not angry at anyone, and I want you to know that I’m grateful for everything I’ve learned. [Description of various loose ends I’ll tie up.] I’ll be around and want to stay engaged in the community when I can. Because I care very much about the work.
After [x date – originally the end of the month, but I later decided not to go back at all], I do need a much more flexible, non-staff relationship to [organization]. I won’t be able to help with [super big huge community events coming up]–the intensity of the pace and the long hours involved are just too hard for me at this point. I hope you can understand.

***

That’s my story. :/

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