first in a series of series of declared series

I am so frustrated I could file a class action lawsuit! If, you know, I had a lawyer. And money to pay them if they did not want to do all this work for free because I have a hunch the system is rigged and besides I am the most unreliable witness alive.

Ok maybe not the most unreliable. But my credibility and my credit are both shot. Probably it is no coincidence that they would go down together but if I start drawing connections too sharply I am going to look like I am psychotic or something and that would just–

well, underscore the “with psychotic features” portion of my vast collection of diagnoses. Which diagnoses will come up again if I get that far before I die but I am not sure how far I will even get before the coffee wears off or my eyes start aching so badly that I must stop typing and stare at my feet for the rest of the evening.

Personal responsibility. I have a lot of thoughts about that. Of course in late capitalism the persons saddled with personal responsibility are not those persons the Supreme Court saw fit to fashion out of the inherently lopsided autocracies that are corporations. They can do whatever they want; the invisible hand will guide and protect them in its boundless mercy for profit seekers.

The rest of us though. No such protection.

Still I can fantasize that everyone who espouses personal responsibility would actually be happy to take some on themselves and prove to the rest of us that they do believe this responsibility applies to everyone, not just to those other people who are not able to meet the free-market definition of worthiness.

I had the idea today to go out into the world. Because lately I have not been doing a whole lot of that because when I do what often happens is quite a lot like what happened today. I took my camera; I sort of made a new Gregorian calendar year resolution to go take pictures on my block at least once a week for the rest of the year and to try to see things that I have already seen a million times at least differently enough to take interesting pictures. Part of the resolution included posting them, somewhere, for anyone out there to look at. I hope to be able to get to that in between what may be called dystonic storms if what is going on with me is what I think is going on with me.

Really I think this was just an idea I had around the first of the year and I figured well this is a punctual moment so why not start and call it (one of) my project(s) for the year.

Looking up at an old building with columns and wrought iron faux balconies on the boarded-up windows

Today I took pictures of an old building that I am quite certain will soon lose its beautiful crumbling facade when someone buys it and decides that restoring said facade would cut into profits too much and instead they replace the facade with a facile quote of said facade. Because this has already happened to the two buildings adjacent to this one that were built in similar styles some time ago when architectural flourishes were not seen as excessive or if they were seen as excessive then it was still worth the time and money to carry them out in order to simply be excessive.

The point of my field trip was not necessarily the photography although I was aware this might be the only thing I was able to accomplish if I did accomplish anything at all. My general plan was to walk somewhere where there was a place to sit and then to sit there and maybe write a little bit about one or two of the million things that have occurred to me in the last couple of years and then gotten lost in the ceaseless clatter that is my central nervous system looking for itself or America or some other nostalgia-ridden peaceful ideal and that also makes starting andor continuing to write or think on any of these things into a challenge of modestly exhausting proportions.

I got as far as the parklet outside of a cafe over on Valencia just south of 22nd Street. I had thought maybe to try for the library at 24th Street but my back did not like all the standing still I had done while using my camera so I stopped here. I even got some coffee although I could not really afford it because why not go all out?

So I took my coffee to a parklet table and got myself seated which is itself an involved affair for reasons I do not fully understand except that it might have something to do with how I hang half of the things I think I might need from my bag and so they often get tangled up in each other and me and the dozen or so wallet chains I decorate myself wtih besides. Plus today a camera on a strap around my neck and you would think that carrying a bag would make organization easier instead of harder but no. It gets even worse if I put things in or on a backpack with carabiners and velcro and paracord. Backpacks are made to keep things out of reach until you Get There but I usually need things enroute and I should probably just get a toolbelt or something similar that could hold lots of things without using up my hands and neck.

Eventually though I was seated with my iDevice out and my coffee in front of me and I opened a note-taking app all ready to start. And then I realized that my eyes, neck, and head were all throbbing. At slightly different frequencies and also and this has been going on for a while but I do not notice that much here in my house because I guess I do not look down much at home if I look down that is if I bend my neck rather than, say, my waist in order to see something below my current horizon line then my head starts to ache or in this case ache worse. My neck muscles apparently do not like to be stretched that way because the ache starts in the back on one or both sides of my cervical spine and apreads from there to my temple(s) and forehead(s–oh wait. I only have one of those!).

This can be annoying when trying to use an iDevice without holding it up so that I can look directly ahead at it. Holding the iDevice up in that way makes my shoulder muscles angry if I do it for too long especially if the reason I am doing it is because the muscles in my face are angry because they will just spread the love on down to whatever part of me tries to do anything but remain still and as relaxed as possible which often is not at all possible but you have to try anyway if you want to be able to do anything at all the rest of the day.

My nose was twitching. Not so that anyone could see it but some nerve in my right-nostril-flaring muscle(s?) was unhappy or alarmed or something and so sending a repeated signal to a tiny bit of that muscle to contract and then shiver at about 70Hz or so for half a second. A half second of rest and then another signal. You might say it was on a 70Hz over 2Hz sort of signal. Or the other way around.

I don’t know which.

But most of the muscles in my face twitch for short periods at about 70Hz and in the night when it is quiet I can hear them, you know, from the inside, through whatever bone is between the muscle and my inner ear. Because my jaw is trying to shut itself with great emphasis much of the time and with varying amounts of force fueling that emphasis, I can only tell if it is relaxed if I stop hearing it strain against itself. Sometimes this means my jaw can be fully slack, but it usually finds rest somewhere between clenched tight and teeth not quite touching. A point of homeostasis between warring muscle groups, always at a slightly different length of the arc that defines the full range through which my chin can move all by itself. “Slack” jaw for me actually requires continuous muscular effort against the contractive forces almost always exercising themselves. And this generates that same hum slightly higher in pitch than the familiar sixty cycles of AC power. Or wherever those sixty cycles come from. Wall socket I am pretty sure but don’t quote me on that.

My eyes do not hum. They just ache if I try to swivel them upwards or sideways. You know, in their sockets. Not moving my head. Not all the time but if my nose or cheek or eyebrow are twitching it is usually the case that my eyes are not wanting to do any work at all other than the heavy-lidded unfocused meditation gaze at forty-five degrees of nothing. And so that is what I let them do even if I am not formally meditating right that minute. In fact this whole symphony of muscular restlessness will sometimes relent of I meditate on the spot. Or at least I can keep it toned down a little for as long as I look down with my eyes half-closed and my neck absolutely straight or even bent back slightly. If I wait long enough I can say I was meditating even if I was just waiting for the storm to pass and trying to think calm relaxing thoughts to help it on its way as well as to retain my own composure for another few minutes.

Klonopin can help a bit too, so I took a quarter of one and washed it down with my coffee so as to maybe counteract its sleepier-making effects. Oh and also water. Especially if I have eaten recently, half to a full liter of water can hurry my face along towards placidity. Of course then I will be hurrying myself along to the restroom soon enough but I know where all the good ones are in my neighborhood plus if all else fails I can just use the one in my therapist’s waiting room I mean hallway.

And so once the Klonopin and water and coffee were administered I sat somewhat Buddha like in the parklet chair with my head facing forward and my eyes down. People walked past with great commotion of noise and light. They say that the eye thing–if dystonia is the cause or rather the effect become a cause of the twitches and contractions–is a slow spasm of the eyelid muscles, but that does not explain at all why sound becomes all clanky loud and light all knife-edged bright while I cannot look at anything that requires eye muscle movement of any kind not just lid-raising.

In any case. I managed to type two paragraphs into my iDevice eventually but that was all my body would let me do, so I got up and walked home after getting my bag and my jacket and my camera all tied on in the right places. I rifled through the things I keep in my head to write for the one that would be a useful tangent for the story I keep saying that I want to write which is my own story of which there are thousands if not tens of thousands or more and it hit me: fucking class-action lawsuit! The mess I have been in the last several however manies is one that others share and not one of us chose to place outselves here.

But against whom? I start to make a list:

Jack Chick, most definitely, or whatever he left of his little evangelistic comic empire.

The Southern Baptist Convention?

How far back into the multiple, ramified chains of events would one want to reach?

I think the statute of limitations has passed to try to find the dude who raped me.

Not my brother. I know where he is.

The other dude.

How about a class-action lawsuit against the whole of compulsory anatomically essentialist heteronormativity? Who precisely is responsible for that?

Billy Graham Industries or LLC or Incorporated or however his offspring continue to make money by threatening the masses with the Lake of Fire. Oh, sorry. This one belongs up there with Jack Chick. I would not say the Grahams are completely to blame for the heteroassumptions into which they were all born.

I am refraining from naming what might be the most obvious entity to sue if the symptoms that started as soon as I stopped taking Zyprexa and continue to this day are actually somehow even in the most tortuous of ways connected the drug itself or its method of discontinuation. I will just leave this here though.

OK this was going to be a short intro? And I was going to write the story of why Jack Chick is the first culpable party that sprang to mind upon imagining financial compensation for chronic daily annoyance? But probably I have lost most of my audience already so I will try that a little later with some luck and Klonopin and water oh and lots of just. breathing.

 

 

uncle sam? is that you?

Context matters:

I live in the US.
I receive Supplemental Security Income, or SSI, because I am disabled.
I do not receive Social Security Disability Insurance, or SSDI. I will explain why that is.
The Social Security Administration administers both SSI and SSDI, determining eligibility and overseeing the continuing disbursement of benefits.

please sirs and mesdames may I have another:

Less than a month ago I received a letter from the Social Security Administration saying that I needed to come in and apply for SSDI to make sure I was not eligible for it, because if I were, that would affect my SSI payments. They had scheduled me an appointment. The day I got the letter, the appointment was a week away. It did not contain any other clues as to why SSDI had become an issue in my case.

I did not go to the appointment. I wish this had been a casual oversight; it would have been much less painful that way.

Depression and PTSD can–and usually do at the slightest opportunity–make it extremely difficult for me to keep any sort of engagement on anything like Earth time. It took me six months and three consecutive appointments to finally be able to appear for a CT scan this past spring and summer. Part of the holdup–but by no means all of it–was that it took me several weeks to be able to begin to take a shower. Once started, the shower itself occupied the better part of three days. Well, as far as I was concerned showering was in fact the worst part of those three days. Figures of speech do not always line up exactly the way you want do they.

I should mention that the CT scan was ordered in part to rule out cancer. So you see what it looks like when I am highly interested in getting something done while that something happens also to set off a variety of emotional/physiological disturbances despite my best efforts to remain undisturbed–or sufficiently undisturbed that I can see to the doing of the something. Thus, seeing to it will take a very. very. very. long time. And that is with lots of help, lots of rescheduling, lots of no it’s okay let us know if anything would make it easier. Absent the help and yes this extremely slow response time might be what kills me. Chronic problems are chronic.

So that is an example. To keep an engagement with an entity holding a great deal of power over me entails a great deal of anxiety management, behavior management, cognitive management, and autonomic nervous system management–short of heavy sedation, this last is hit-or-miss at best. These all require very careful planning to prevent, where possible, and manage, where not, unrelated stressors that inevitably pile themselves on in obeisance to the sheer randomness of the universe.

The chances of me being able to keep such an engagement when issued one week in advance without the slightest warning or indication are, practically speaking, just about zero. This is something I have learned I cannot beat out of myself, shame out of myself, berate out of myself, or even softly cajole out of myself. The only way to work around it at all is to proceed slowly, attentively, and without coercion, whether internal or external. You could say I have a hair trigger for coercion. The slightest hint of it and I just, sort of, stop.

In that week’s time leading up to the appointment I was able to: consider emailing my former advocates for advice; notice on their website that they strongly suggest calling instead of emailing if time is short or the need urgent; decide instead to call them; spend a few days trying to move myself to pick up the phone and make the call, without success; ask myself whether I might just email them anyway; reach no conclusion on the email question other than that maybe I was not supposed to do that so I should try one more day to call; figure out for myself why I was finding it so difficult to call them when I had done it before without having to overcome quite this much resistance; realize that I needed to change tactics; and then to–ok, by this time the appointment was three days in the past. I did not make it to the step of finding someone to call Social Security for me to request a later appointment. This would have occurred just after I considered whether or not I could do that without help. I did not get to that step either.

I should probably add that during this time I was also confronted with some bare hint of return of the mental phenomena that Zyprexa had been medicating me against (nominally or presumably or in effect–no idea which) up until just about a year ago, when I had to be taken off the drug after developing tardive dyskinesia. That whole episode is not over yet, but the week with the whirly thoughts turned out ok only it required nearly all of my concentration and energy to ascertain how best to respond to the whirly thoughts and it left me a little jumpy about how the whirly thoughts might respond to my response as time goes on. I did not spend all that much time trying to call for help with the Social Security appointment because there was not all that much time left over. I was also sleeping ten to eleven hours a night but still waking up exhausted.

The next week and a bit more consisted mostly of what now and how fast or how slow should I go and what do you suppose will happen next and I wonder what I need to do about that appointment. While I was looking into all these questions, another letter arrived from Social Security.

Paraphrase:

Your SSI benefits are being suspended beginning next month because you did not do as the law required, which was to apply for all other benefits for which you might be eligible. You have ten days to file an appeal to keep from interrupting your payments. You can have someone represent you but you should probably get in touch with them very soon because we are not fucking around.

love, your friends at the SSA

ok.

uhm,
ok.

well.

[insert here several days of immobile freakout ending with one very short very intense very impromptu surprise extra therapy half-fifty-minutes. no spinning headlines but maybe some black and white noir-psychedelic effects to stand for confusion and distress and then thick cloud cover but for a tiny pinprick of sunlight]

1. I actually did apply for SSDI in 2010. I was determined not eligible because in my entire working life I have not paid enough into the system to be able to get anything back out of it. Have they forgotten? Did something change? I have done no paid work in the last three years and thus have not paid any more taxes of any sort. I will take SSDI if they want to offer, but why is this being held over my head all of a sudden as though I have been neglecting some essential duty for some very long time?

2. I have PTSD from childhood emotional, spiritual, and sexual abuse/rape. There simply is no way for me to approach an authoritative entity without fairly involved preparation. Without preparation I am looking at extremely painful and possibly dangerous physiological cascades that among other things dump so much cortisol into my bloodstream so quickly that I can feel it overflowing its well-marked trenches–the ones it has eroded out of my nervous system over the last fifty years and which we are working constantly to fill back in so that my neurons can more easily reconnect in less alarming ways. Sometimes these reactions occur despite our best efforts to stem them, but usually they can be mitigated in some way if we have some time and space to work with them.

Given this–that is, given the nature of my disability–why and how is it ok for the Social Security Administration to send me these kinds of communications? This whole sequence could not be any more restimulating of trauma-produced neurological pathways if it had been planned expressly for the purpose.

And this was their opening move.

3. I don’t even know. I seem to live in some insane unintuitive upsidedown opposite land. Or I got moved here at some point. Which is it and where is the reasonable universe.

 
 

not an epilogue because time is weird

Today is Sunday. Two days ago I walked downtown to the office of the organization that helped me apply for SS(D)I the first time around. It looks like they will help me now but I still have to figure out how best to light a fire under someone in a very short time when the most I personally can do is say help. um. help? help. With just about that much volume.

Somewhere not too long ago I read something about how the fight/flight/freeze response can become “stuck” in PTSD and that many abused as children learned to freeze and so this is where they get stuck as adults and if this is so then it explains a number of things about weeks like the one that just passed.

I have people. I said to one of them yesterday: I guess I am lucky. And it is true. I am. On my own, I would already be on the street.

post-post-epi-script-logue

To be clear, I am complaining here about how the Social Security Administration is making my life unnecessarily stressful by thoughtlessly taking advantage of my disability to try to shake me off their rolls. But I want also to emphasize that I am lucky because I have help. I will be ok, one way or the other.

See, I do not know if this is a procedure that ticks off every few years for anyone on SSI, where the computer says oh it is time to harass this person for a little while to see if they can be got rid of, and so happens regularly, or if this is a one-time push to see how many people they can cut costs on at one time. But either way it seems abundantly clear to me that it is a deliberate effort to cull people out of SSI benefits, whether they are taking us one at a time or targeting several in one go.

I will leave to the side the complex and worthwhile problem of whether this sort of bureaucratic action is being taken actually to trim payments to people who might no longer need them. It does not look that way to me; they want to see if another agency can fund my benefits. Paper money shuffling. The point, though, is that this sort of maneuvering will undoubtedly cause people like me to lose their benefits quite aside from any question of whether any of us are in need of them: and it will do so by exploiting the fact of our disabilities. They are betting that I will not be up to the challenge of taking them on. They would stand a very good chance of winning that bet very quickly if I did not have access to external resources. Many disabled people do not.

And so this letter is not something that just happens to upset me. It is a manifestation of a systemic failure to address disability in terms that are appropriate for addressing disability without causing further harm.

I do not mean to make claims about some grand conspiracy to bully disabled people out of their benefits (even though my definition of “conspiracy” is shifting these days to include those that are enacted without any well-organized and deliberate agency to guide them). But there certainly is a widespread mythology about disability benefits being abused and individuals getting rich off their Social Security checks. In response to this mythology we certainly can see an array of forces trying to make it harder and harder to obtain disability benefits. And further arguments over who should and should not get how much money for what.

What there is not, that I am aware of, is any conversation in the US that looks at how the Social Security Administration itself treats disabled people, and whether it treats us equitably in its administration of SSI and SSDI.

fly me. or not.

I am trying to find a way to Seattle and back that involves as little money as possible. For reasons about which I can only begin to speculate air travel is less expensive than both rail and bus but no matter which I were to choose I cannot really afford either one. So this may all be moot in my particular case but it still seems pertinent to say:

Looking at the anecdotes posted at tsastatus.net for SEA and SFO sent me diving for a Klonopin. These stories are not particularly graphic and do not consist of the most horrible cases of TSA personal encroachment that have been passed around, but imagining myself in the place of the people describing their experiences as they went through the security line was enough to send a cascade of cortisol through my body. And so I do what is necessary to counteract it.
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ensign

I have not written anything here in quite some time and all I have today is a poem but I think it might be worth reading for some of you maybe. It’s.. well really I would like to hear what you find it to be about.

20110328 update:
It has a title now and I changed the ending which may or may not really be the ending but for now it is.

~~~~~~

Speaking of which
whetting molted silver gelatin and tin
Estate sales without captions
prints adrift.
I have a book in my cupboard it is
a board
for cups or so it..

driftwoods spirit face moving
over water
I jumped. I meant
to go back and jump again

pinned on my back when he leapt
unheard “do
what I say and I won’t
hurt you” only
what he said itself blunt force
bearing down on me
and up

Between “turn
over” and
“you’re free to go”
blank space or not space yet
as blank
eraser ripping paper it was so hard to modulate
the swipe.

whisper it.
Ships topple sails purple
slack waving
Flagstone and remnant coursing according
to tide tables
traced
tenderly

Rescind me.
One hot July night not fighting but
well sighted
Sighed open ceiling white sheetrock
I slipped through
roughshod tottering
a canyon rim yonder lights out
ignites shout under jet
streamed ice waterwheel
turned or
burned
or
fern walled gullies in March I place
my cheek to wet moss

splayed under this body
three times my size
in spasms beyond recall
This gentle assailant stalls
rubbing himself
forgetful.

Myself I could not seize the moment
only counting on time to peter out
slow blinking deriliction no notes
Here the scene ends

and ends
and ends
and never tires of ending

I cut my teeth on critique
could train resolve on careful reasoning
Neither
jester
nor prince and you
read with the cunning of
some species reknown
for sprightly banter be it
blood at the teeth or thick wine
tableside

Me I
sputter and point
words
pelts
Spit sticks like glue
if you choose your materials
with care.

Water
paper
plastic
Thrown at the wheel or under

Foam specks on the lens
where it met
my teeth
If speech embargoed emits
tines or spikes
might tumbled sand anaesthetics
supply torsioned skin as parchment.

In my dreams soldiers shadows steel-browed and tensile
summon aircraft screeching phallic and armed.
Set us to flight or walk or crawl
or pulling one fist of earth over the other against that insistent friction

You
have dreamed it too:
cement walled crawl spaces
transparent tenements for
the likes
of us.

Who could have less to hide–

but drift
across storefronts
under street lamps
crowd into shopping malls
shipyards
senate chambers

–in hairshirts
of many colors
Cache of zinc
and lead
tungsten flame
charm
of mercury vapor
let us
let our wolf note
exhale
half-buried
half-ascent
its troubled
wave battered
breath
now swept low–

Shall I

swear or forewarn
as thought races its
final lap
My legs numb
still lurching seaward.

back.

I may have been six years old the first time I flew back to Seattle. When I was six nobody knew where Seattle was.

I may have been five, or even four–I do know that I was two when we flew from Seattle to go live in Marietta Georgia and shortly after that we flew back, and thus I began flying back to Seattle when I was too young to be afraid to fly and I have continued to fly back to Seattle through a debilitating fear of flying until this day, if you leave out the few years when I would not fly but instead got into the habit of taking the train back to Seattle.
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on my own

I am not sure if this is the place to write this. I am not even sure where it is I am going to be saying that I am not sure if this is the place to write this. Of my approximately five options, one is a PTSD board for people with PTSD from whatever trauma, one is a board for ex-fundamentalists who have walked away from their churches to varying extents, one is a board I only just joined that seems mostly focused on sexual abuse and rape, and the last board is a board for people with invisible disabilities.

I don’t know the PTSD board very well at all and, to the extent that one can get a vibe from just a few visits to an internet board (and I can, actually, and I am usually right), I get a vibe from this one that gives me some pause as to whether queer non-religious folk are welcome there or would be treated with care. I have not been to the ex-fundamentalist board in about two years and although I did get something out of my time there I don’t remember it being a place where one talked about more general familial abuse or trauma beyond that which was directly related to fundamentalism. About half of what I have to write is directly related to fundamentalism.

The invisible disabilities board is more of a place to go when one is running out of spoons than for insight into abusive childhoods; most of the people on that board do not attribute their disabilities to abuse and most of the disabilities represented there are more physiological than psychological–although I do believe that most psychological disabilities correspond to series of discrete but complex physiological states, there are many discrete, complex physiological disabilities that correspond to no particular psychological state. In other words, my invisible disability is one that tends to get section off in its own little room, apart from those with disabling physical symptoms.
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