I thought this story was going to unfold more quickly than it is currently unfolding even though when I was small I expected it to last forever and it is becoming clearer to me that it will not do that to the extent even that I am feeling a bit rushed trying to put it all into whatever order this is or is not. But there is no sacred time in which to write one’s own memoir or confessional or manifesto or epic or ten cent paperback pulp nonfiction no place from which to quietly observe all that has come to pass and all that passes and so between trying to take this down and trying to maintain the sorts of conditions under which I am able to take this down you might say I am scrambling wildly from point to point while new points of departure throw themselves at me without warning no matter how far away from possible disturbances I try to keep myself.
You cannot step out of life to put life into simple prose and expect it to sit still and nice for you. In other words.
Never stop taking your antipsychotics cold. Cold turkey that is or that is what cold stands for but also the chills that correspond to no fever that will begin to overwhelm you if you put your meds in a drawer one day and leave them there. Just stopping them all at once out of the blue. I would recommend not to do that unless you have absolutely no choice in the matter. Not that I have done this or at least not so far on purpose although there have been days of vicious headaches and uncertain cognitive drift and shaking and sweating while I waited for whatever pharmacy to settle whatever account needed to be settled with whatever bureaucrat in order to authorize the meds for another however long.
I only say this because extrapolation tells me that quitting them all at once would have been much worse. And insofar as I write all this down in case it can be useful for someone else I offer myself as an informative instance.
We did not stop mine cold. What we did was we reduced my dose over time and at each step I waited for the nausea and tremors to subside before going on to the next. And still after breaking in half the smallest pill available in order to taper down to the least amount possible before stopping, relatively speaking very little happened until about a day after I swallowed what was intended to be the last dose ever. Sure I was sleeping a bit less and the headache that I always get if it is even remotely possible to get a headache was almost noticeable, but I was still able to eat a mission-style burrito and a pint of ice cream all on the same day.
For several days in a row if I wanted. This was an early atypical antipsychotic as they continue to call them as though they were carefully targeted to treat a particular and known neurological condition rather than a wide range of behavioral and cognitive problems that may or may not be related to each other and whose causes are not understood at all well and even less so any cure. But one thing predictable about this pill was that it famously makes food very attractive to most anyone who takes it for more than a day or two. Enhanced appetite can be a feature or a bug depending on your point of view and your pancreatic health but this drug also can be unkind to the pancreas as it happens but this has nothing to do with why I stopped taking it as my pancreas survived the decade-long encounter but I was starting to twitch. So we decided that twitching was a bad sign and that getting off the drug would be a good idea to whatever extent that turned out to be possible. Because you never know a thing about what your nervous system will do in response to any given adjustment of meds until the adjustment is in the past tense and you are living through your own neurophysiological recalibration which is something I have done so many times I cannot begin to count how many and still in between recalibrations I forget how the last few have each insisted that I manage it at the cost of all the time and energy available to me starting right then and ending at some surprise moment that remained deferred for now right up to the very end or petering out gradually until I noticed I was sort of normal again.
Until the next one reminds me that in the us here where my experience has accumulated many have been convinced to try to engineer their neurochemistry only to discover that antipsychotics and antidepressants and anxiolytics and mood stabilizers can any single one of them produce physiological events magnitudes scarier than your average hallucination. And then there are those who believe that psychiatric miracles not only happen every day but are practically assured to anyone who consents to enter the realm.
Don’t get me wrong. The drugs work. Sometimes. And also to the extent that they change something sufficiently to cause cognition to clear and/or mood to lift and/or stabilize and/or hallucinations to calm down and/or insomnia finally to break. But why and whether any given drug will do any one of or combination of these things for a given person is currently unknowable. And whatever else that drug might do for or to that given person is also unknowable in kind, extent, and duration. Whether this or that action, direct or indirect, will be recognized as treatment or side-effect depends very much on how a particular body modulates that effect, and how it then adjusts to that modulation, modulates that adjustment, and so on as it tries to relocate its own unique signature and rhythm. The feedback loops develop their own feedback loops.
Cure is less than unlikely it is not even conceivable at present. Intervention is all we have and it remains wildly unpredictable. Collateral damage is the rule. Not expecting it can be not unlike believing in clean, moral war: Somewhat touchingly naïve at first but becoming more criminal the longer it goes on in the face of all evidence to the contrary.
I am still twitching a little bit and more than I usually twitched before I began this drug which if you really need to know the name of it bug me and I am happy to share. I may twitch for the rest of my life and by that I mean more than the average person might twitch or in any case more persistently and obviously than I twitched, say, fifteen years ago.
Incurable twitching was a known consequence of the stuff when I started it but it helped at the time with things I needed help with so I stepped under the psychiatric mallet and took my strikes well aware that the hype was of the purest grade as was as the pretense of clinical precision. But it worked. The drug did I mean. The hype was less than useful. But the drug worked until it stopped working or what seems more likely is that it worked more than it was supposed to strictly speaking or was overly thoroughgoing in its renovation of certain of my fields of neurotransmitter receptors.
Well it is not clear to me what it means to say that a broad-spectrum effort at interfering with multiple points along the chains of action of several neurotransmitters has worked. Almost always something changes but whether those changes are welcome or not varies widely with the person submitting to the interference and with their reasons for doing so. In my case I was eventually able, reliably, to regain some semblance of control over my own thought processes at least enough to keep them from devolving into distressing absurdity which is distressing unlike many other types of absurdity which I actively seek and entertain when I find them. I also gained a sweet tooth that was instrumental in producing forty pounds more of me. And the twitching.
Apparently other things were happening too: Things that would have to be readjusted back or at least toward some minimal approach to tolerability when we decided to stop letting the drug do whatever all it was doing. As far as I can tell my entire gut was in thrall to this drug because as of this writing most of its components are still uncertain how to act without it, nearly four months after we cut off the supply. Not that this was a surprise exactly but in the several years I was more or less preoccupied with getting the voices in my head to shush I did not keep up much with research on what they call neuropharmacology so I am trying to make up for that now if only to try to locate my body’s complaints about it so that perhaps together we can ease the complaints themselves by acting rationally.
Besides that part about nobody knowing how or why or when those complaints arise in various members of the target market. We must act rationally and there is hope there really is only not for us no.
I could be a data point somewhere I suppose if anyone asked. As a psychiatric patient or consumer in the terms of free markets I am conscious of my role in uncovering empirical knowledge on certain psychoactive compounds and harbor no illusions as to how much empiricism goes into the marketing of them once at least one of their effects appears both beneficial and replicable in a defined population from the observer’s perspective.
Very little. I mean, do I have to say it? In case I do. Others have done the work of uncovering just how little and their research is easy to find which is what I have decided to put here instead of a long and bitter caricature of the current structure of clinical trials because although I might be able to send it up with humor and sharp criticism to do so would create a bigger narrative tangent than even I want to embark upon. That and all the additional insight I have to add to that currently existing will be exhausted here very soon without any need of polemic.
Thirty years ago I was in a psychiatric institution for persistent and powerful urges to off myself—that whole episode will flesh itself out here over the next several lifetimes it takes me to finish writing all this down—and I heard the same tattered metaphor for tricyclic antidepressants as is used now for ssris and snris and ssssteamships and whatever else they give to crazy people so that they can say that we are receiving treatment. You have heard it even if you do not remember but here I will remind you: This is what they would say: You have a chemical imbalance in your brain and this drug (no matter what drug they were referring to and they often do not even know which one or ones) helps to correct that imbalance. You might need to take this the rest of your life, just like many diabetics have to take insulin if they want to live.
See? You have heard that before even if nobody has addressed you directly with it. Thirty years ago I had already discovered the physicians’ desk reference as a kind of window shopping catalog and so I looked up anything I was prescribed and I was quite aware that the tricyclic I was on was presumed to work for a hypothetical reason which reason’s pharmacokinetic mechanism was entirely unknown although maybe some would say one of a number of not-yet-understood routes of action. I leave the question of whether they are better understood now as an exercise for the reader. Or the dancer or the headwaiter or the priest or the circus sideshow freak. Or anyone else interested in finding out.
And so when I heard that I had a chemical imbalance that was being corrected with whatever drug I was taking—the statement was directed at a group of us medicated ones, and apparently all of our poorly-understood compounds were really working according to this fabulously simple model and/or faulty analogy—i instantaneously recognized just how much mental health care relies on propaganda. I already knew that it did, but the degree to which medical professionals would be willing to repeat inaccurate information while calling it the truth of an enlightened age, well, that startled me a little bit.
Not a whole lot of bit.
But a little bit.
See I was a smart kid but I was and am more naïve than your average bear and by naïve I do not mean unsullied in any way by worldly knowledge but rather still too quick to attribute honorable intentions to whomever. I have naïvely trusted known criminals with the full knowledge that they were criminals and even while consciously realizing that my trust was misplaced—but I have placed it anyway and not only because doing so can bring civility and sociability to almost any interaction but at least that. Back then that is back in the day room at the hospital I was not even being deliberately naïve when I trusted my doctors to have read their pdrs and to never intentionally falsify nor conceal what they had found there.
So I paused, narrowed my eyes, and then rolled them quietly, to myself. So this is how far the let’s pretend atmosphere of psychiatry extends. And I affixed a permanent post-it note to the part of my brain that grants credibility.
Were there post-it notes yet? I may be perpetuating an anachronism. You can thank me later.
Not that it doesn’t get worse. While I was waiting to feel better this summer and fall and for those moments when I am capable of reading for comprehension I picked up a copy of a neuropharmacology textbook. So far the most interesting thing about it is its willingness to encourage future pharmacological researchers to tinker with anything described on its pages even though many of the descriptions are necessarily incomplete and even more even though: Yes you will be messing around with a system that is so complex that we have just begun to find useful shorthands for mapping it and yes there will undoubtedly obtain from any clinical trials or actual pharmaceutical marketing a number of unintended and unanticipated consequences—some of which will be serious and others less so—but we have a rhetoric of the side-effect to help us reassure the end user that although this pill might kill them we really do not mean for it to and if you think about it you could even ascribe only positive intentions to the pill itself, as though it were trying very very hard only to correct those neurons that were indeed giving you trouble but just could not help itself going after any and every part of the body that it could possibly affect I mean it is like asking a dog off leash not to chase the squirrel sitting there a mere fifty feet away what would you do if you were the dog. Nobody means you any harm and if you try to assert that you have been harmed by this drug well you are a mental patient how can we believe anything you say about your own experience when your very perception is by our definition disordered.
Nobody has articulated this exactly as far as I know but it is a discernible pattern everywhere from the pdr itself to the message boards where we crazy ones hang out on the internet.
The process of quitting this drug after more than twelve years of therapeutic dosing created a kind of tesseract between spring and winter of this year, effectively compelling me to pass through summer and fall without observing any sign of an observable period of time. Instead I recall a recent low-slung winter afternoon with one more cat and almost thirty fewer pounds of miscellaneous flesh than I had with me in may. Between may and that memory is a non-uniform field of annoyance and fear the sort of place through which one might wander for 40 days or 40 years it makes no difference which without so much as a diary entry to show for it. That is I do remember the cat’s arrival and I do recall the relatively rapid metabolism of sizable portions of myself when I was unable to get much nourishment in from outside the body. And they both gave me something substantial to think about when I could not read not eat not follow the plot of a cartoon not sleep casually as one might when presence of mind is unbearable not venture more than three blocks from my house—the limit beyond which I might well collapse from an inability to regulate my core body temperature or to drink water quickly enough to replace that lost through the drenching sweat that was one of the more bothersome effects of this inability or rather the most bothersome besides the loss of strength sufficient to stay on my feet.
That was bothersome too and it has occurred to me that maybe it should have been disturbing outright but I rarely register disturbance in response to physical reactions or states or symptoms and this is probably because so far none of them have even come close to killing me whereas those often associated with what is called in my culture “mental illness” have thrown my mortality in my face so many times that by now I have reached a kind of fatalistic truce with them but only after three decades of unrelieved terror.
After a while you can begin to see that even if they are not bluffing it is still possible to consciously hold your fire or your knife blade or your bedsheet noose or your stockpile of as many pills as you think might be sure to do what you mean for them to do. All you need is another five minutes. Invariably, they arrive from somewhere. And if they are insufficient or no less painful than those that came before, five more will be along right behind them although like late buses sometimes right behind means certainly between here and the place the last bus left five hours ago but not necessarily just a few minutes behind it as it pulled away one half-second before you reached the bus stop and your fellow bus patrons were yelling wait! Wait for her! Because one time out of thirty-two the driver will indeed stop and wait and even re-open the front doors.
If the five minutes currently available seem especially painful the best way to wait them out can sometimes be to find unconsciousness however you might find it with relative safety although some will say and without malice they really are trying to help so they say if you were able somehow to crawl out of bed and sit upright in a kitchen chair you would feel that much better. And although that might be true from time to time the values for feel better tend to vary wildly and from your perspective may only denote that you are now sobbing quietly instead of with great heaves hands over your face as before.
What those inexperienced in this sort of pain often fail to understand is that seeing the world from an upright position cannot be known ahead of time to be worth the slow, painful effort to extract yourself from underneath the dead weight of inertia long enough not only to escape those heat-logged percale sheets and massive mother bears of wool blankets but also to put on enough clothes to satisfy the modesty of those living with you and even to swallow a bite or two of something so you don’t just keel right back over once you gain the chair.
Will this be a net improvement or a needless expenditure of resources better used in one-upping the voices in your head who could not give less of a damn what position you are in when you surrender to them so long as you do surrender and you will and you know that in your heart of hearts you have known it since you were very very small and it is the best for you we know best stop trying to fool yourself. Used to be the voices were not yours you know you are going to say yes so why don’t you just say it now or that is they were locatable as originating from a body distinct from yours I know you know what the truth is you cannot resist it forever (imperial truth! Colonial truth!) whereas now a subcircuit of your own agency works to keep you in line well before anyone out there asks you to queue up see you hesitated that is how you know you know that you are wrong in what you think you think.
I did not come up with any of this without someone else’s help.
Which is why sitting standing or lying down the single hope of rationality and promise of compassion—not that you can imagine anything of the sort but you know you would recognize it if it were to arrive as it would somehow convey to you that not only can nobody demand that either you answer their questions immediately with footnotes and citations and refutations of all conceivable opposing arguments or you surrender yourself completely to their efforts to resculpt you after their fondest imaginings of imperturbable security and tradition regardless of whether such tradition has any capacity at all to address those questions written in your neurological tissues before you had any say in the matter because it is not your questions that you were summoned to consider and in fact you could if you chose you could turn and walk away without offering any explanation for doing so—the one chance you have of gaining anything like this sort of insight lies in listening to anything and seeing anything and allowing anything to come along just as it does without reacting to it in any way other than to pay strict attention to everything about it that you can perceive. What this means more or less if it is not clear yet is that if you can learn to entertain any notion that is neither to accept nor reject it but to entertain it and offer it a room for the night and hear it out and refrain from interrupting then all that desperate force with which it clasped you by the ears and turned your face to its face while barking incoherent and conflicting orders it will begin to find a pattern or a route or a series of gestures or an open road or whatever repeal of whatever prohibition had given it cause to panic in the first place that its chance at going on the record was about to disappear forever or already had and so it was very necessary you see to abduct you out of your own travel plans to hear it out.
If you can do this that is if you can grant audience to your own captive captors who approached you long before you were able to make out your own reflection in glass or water or fine plastic leaving you absolutely enthralled to them: To everyone who ever addressed you or loved you or chastised you or humiliated you or touched you or taught you or stripped off your clothes and raped you or offered your life to their angry gods or offered you shelter from yours because the difference between you and them is no more than the direction and number of passages intersecting where they appear to appear and no more than the most subtle adjustment of viewing angle were it possible to gain one from outside the tangle of ever proliferating traffic between us and so to get a feel for their infernal logic is to locate the root of compassion for not only yourself but for any subset of any universe possible and impossible that you may ever meet—get there and you may be able to proceed. This although that to proceed from the audience being granted to the end of the delivery of the petitioner’s demands may be also to assent to your own disintegration without any assurance at all—with or without king’s horses and with or without king’s men—that you will find yourself again in any shape that you can imagine there at the point from which you decide whether to depart. This is not always a bad thing but it is usually a difficult one.
Thus sobriety in the attempt can be useful but by that I do not mean the kind of sobriety we learned wherein one must swear off an arbitrary selection of methods and compounds and regard them as producing only illegitimate perceptual relationships with the real. That’s not real usually means I do not want that to be real and so I will declare it false and insist that everyone agree with me no matter what sort of real any of them might be interested in looking into.
I do not intend to suggest any route to salvation of any kind and probably your idea of what salvation would be would not survive any more than would your beloved agency were you to try this out but so salvation may be very much beside the point which is why I mention it at all or that is because for some it may not yet seem to be and so in searching for it one risks that sort of permanent tangent in which one must forget and or disavow tangent itself.
It is possible also that you will not be making any conscious choice in the matter of choosing but that this tortuous mediation might try you out before you have a great deal of time in which to ponder what it might do for or to or with you. I have mentioned it before but there is nothing dividing you and me, no way of distinguishing your own sanity as over and against whatever it is that conditions my perceptions for me. You may have numbers behind you but they are only numbers and as such cannot guarantee their own significance for you from one day to the next.
But maybe you see maybe why the elaborated process necessary to sit up in a chair may or may not be the most urgent point of investment for one’s energy at a particular moment. A time for chairs a time for beds a time to act a time to pass a time for conversation a time for catatonia a time for seeking information a time for analyzing options a time for saving all one’s energy for dreaming and for listening to the music of the spheres that animate your arms and legs and eyes and hands. A time also for the undetectable pause of dreamless sleep or more accurately no time for it or that is some property aside from time where the massive tension of being relaxes its hold just enough that you can entirely dispense with keeping yourself sufficiently together to find the sense in checking your watch.
the Blue Socks Chapter continues
I promise that much.