Thursday, November 14, 2019

Comments by LavenderSage

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  • What you assert, KS, is absolutely true. This became crystal clear to me in 8th grade. We were staying with friends of my mother. Their son, labeled a juvenile delinquent, did not attend school but was instead on a program of home instruction. Once a week, a teacher would deliver a packet of worksheet assignments and collect the ones from the previous week. I looked over the packet and it was 100% pro-military propaganda designed to steer him into enlistment. I was disgusted by it, and so was the target pupil.

  • I hear you, Someone Else! I took Effexor for less than a year in 2003 and developed allergies I’d never had. Scented products had never been an issue before that drug. Just this past month I have noticed that I can walk through the laundry aisle now without my nose itching and stuffing up, and the angel trumpets in my backyard are no longer a source of headache. The scent is lovely; I can actually enjoy it again. It took 15 years for the drug to lose its hold on my nose. Maybe there is hope for your brain zaps.

  • I have only just begun reading the article and noticed this mistake:

    “In the wake of back-to-back mass shootings in El Paso and Texas last month,”

    I’m sure you meant to write: “in El Paso, Texas and Dayton, Ohio”

    Okay, reading on now…

  • There’s no reason not to record every single interaction with every doctor you encounter “to review later.” Privacy laws are to protect the privacy of the Patient, not the doctor. Keeping good records is a big part of being your own healthcare advocate. And speaking of records, get a copy of yours. I think it’s important for them to know that they are being held accountable.

  • Hi Jane, thanks for sharing. I took effexor for less than a year in 2003 and “accidentally” cold-turkeyed off it by forgetting to take it when we moved. It gave me vertigo from hell. I could not have my eyes open, really, because it was all moving. Lasted just over 2 weeks. But what it really did a number on was my ability to feel love. It has been 15 years and only a couple weeks ago, for the first time in 15 YEARS, did I feel the sensation of that rush of love for my wife I used to feel all the time. The drug was an expert thief- stole my ability to love without me noticing until the damage was done. I do not know if I will ever get everything back. But I love my wife, and love my cats.

    Re: tinnitus, I have what they call pulsative tinnitus, which is not a ringing in the ears, it is the whooshing sound of the blood coursing through my carotid artery. Most times when I am experiencing it enough to bother me, my BP is running high. (Oddly, smoking cannabis sometimes brings on the whooshing even though it lowers my BP, a weird I have not yet figured out.) If you have access to a BP monitor, you might want to check it during these episodes of over-stimulation just to see.

  • I’m sure it was very intense to be in it. Like I said, I could hear from my tent. But it was a distance away from places like Family Camp, Childcare, and the camp where they held 12-step meetings (can’t remember the name). It was at the other end- where he drummers and bonfire were in the evenings/nights. You could escape the noise if you needed to, but I was actually in awe of it. It sounded raw, yes, but beautiful, in the way impromptu freeform chanting can produce strange yet beautiful chords. It was like a chorus of agony, haunting. I sat for a bit really listening, letting it blow through me like a wind, but I kept a respectful distance because it was not the space I was in- I was there with my girlfriend, a new relationship, which is a very different energy. I had nothing that I was grieving at that time in my life.
    But a couple of months ago I found out that a friend had died, and I was reminded of that Keening Circle when the waves of grief came. It helped me honor the loss, and make space to have my process with it.

    I fully agree with you about words, by the way. I also think that for those traumas that are beyond words, where there are no words, or that happened pre-verbal, the Keening Circle could provide a space for cathartic release where words are not required.

  • And some pain is way deeper, way more intense and primal, than words can ever touch. I went to a Pagan festival once that had a ritual called The Keening Circle. It was exactly that- people all wailing and keening and sobbing as they gave themselves over to grieving profound losses. I was scheduled to do something else when it started, so I didn’t participate, but it went on for quite some time. I could hear from my tent. We need this: Elders created safe space for the community to gather and share their deepest pain and grief. a place where even words could be too cerebral, too limiting to express the raw emotion. The step beyond graphic detail.

  • Hello Peter,
    I was struck by your response to JAMA’s rejection of your letter, and was not surprised to see it was not well-received. Instead of interpreting this sentence: “we determined your letter did not receive a high enough priority rating for publication” in terms of JAMA’s values and whatnot, why did you not simply ask them how they determine a priority rating? What are the criteria? What is included in consideration of this rating? After you get clarification of “the rules,” you can hold them to their own standards. But your reply, instead, reads like an indictment. It comes across as juvenile and reactionary, and I think you can do better. It is also the way that psychiatrists all too often frame their interactions with patients: instead of asking directly, they interpret in a way that reinforces their prejudices and biases.

    This is constructive criticism I am offering you, and I hope you receive it that way, and decide to change your approach.

  • Why any person would think that someone else is in a better position to weigh the risks/benefits of any drug or treatment or program for them than they are is beyond me. Informed consent means that The Patient has been given all the information- what are the intended effects? Other (“side”) effects? What is the natural progression of the condition if nothing is done? Why is this particular treatment being recommended, as opposed to others- share the reasoning. A doctor is a consultant, meant to share their expertise with their patient, who is the decider,
    I liken it to a contractor, If your bathroom needs remodeling, you will likely need a contractor to explain the relative advantages of different materials (ceramic tile, stone, linoleum) and advise you of the relevant building codes. They will certainly take into consideration things like load-bearing walls, but they may not know anything at all about you, and what is most important to you. Most bathrooms have a mirror above the sink, but maybe that design does not work for you. You have your reasons, but you don’t need to explain them to anybody- this is Your bathroom, after all, in Your house. Contractor is not going to have to shower there- You are. If, in your life, a window above the sink works better for you, would you continue to employ a contractor that tries to insist you will get a mirror there instead?
    The doctor does not “shower in your bathroom,” does not move within your body, is not governed by your values. [I am reminded of a joke about why some men name their penis: they would not want a stranger making 99% of their decisions.]

  • I feel a kinship with much of what you’ve written here, Lee. Thank you for sharing your truth. I used to wander a lot too, both walking and driving. And when I was in high school I used to lay on the stage in the auditorium- because it was the place that could receive all the stories, always accepting the truth of the story, whatever was revealed. The stage received it all , without reserve, without judgement. The stage whispered “Tell me. Tell me what is.” The stage would echo whispers and secrets, stomps and leaps. The stage never interpreted, only received and accepted and echoed whatever truth you could be strong enough to bring to it. It was my solace.

  • There was nothing wrong with viewing ‘abnormal’ behaviors as supernatural, when the culture doing so did not also automatically assume that supernatural things were also scary, evil, dangerous. There were times and cultures where people understood supernatural to mean “something unusual, that only certain people are capable of,” and usually it was after coming close to death and living through the injury or illness. Remove the dirty lens of evil that religion places over the supernatural, and look through the lens of tribal cultures and you see a shaman, one who can walk between the worlds, and speak with the dead, and see visions of times/places not present. These individuals were valued, they were acknowledged as having access to sources of information the average person did not. And when they shared their visions, their wisdom, the community respected their words and their ways. It would be unthinkable to dismiss a shaman’s wisdom, disregard them as senseless, worthless, etc.
    Turning away from this reality has dismembered us as a species; we are maybe half as human as our ancestors who understood this.

  • All of this would be cleared up if fully-informed consent was the mandate. Then prescribers would have to disclose the fact that they don’t know how to safely de-prescribe these drugs once patients start taking them. How many would even start?
    There was an excellent Sample Consent Form on MIA several years ago that I’ve tried to find again. Any regulars here better at searching than me? Could somebody provide a link?

  • I wish all parents were so well-informed! They have no idea what they are costing their child by allowing the child to be labeled in order to get “services” or accommodations for their child’s learning needs. Dr. Caplan- do you know whether a parent can give consent for assessment with the stipulation that the child NOT be labeled with a DSM diagnosis? (I bet the answer could vary from state to state.) When I was doing educational advocacy, I had a couple of families that held their ground on not drugging their child, but I don’t ever recall a parent drawing the line at diagnoses. Even if I were woke then like I am now, by the time they were assigned to me, they were already labeled.

  • Please contact the Hearing Voices Network so they can educate you about how very important it is to approach your child’s experience not as a pathology. Also, please read some of the blogs that other parents have posted here- you will see story after story of parents warning others not to make the same mistake (trusting the “mental health” system) that cost them the life of their precious child. I know that you are scared, and feeling tremendous pressure to do something, but pathologizing this experience will cause damage. Have you tried asking your son about the voices he hears? Has he tried dialoguing with them, asking why they are there and what they want?
    I’m posting this in both places that you posted your message.

  • Please contact the Hearing Voices Network so they can educate you about how very important it is to approach your child’s experience not as a pathology. Also, please read some of the blogs that other parents have posted here- you will see story after story of parents warning others not to make the same mistake (trusting the “mental health” system) that cost them the life of their precious child. I know that you are scared, and feeling tremendous pressure to do something, but pathologizing this experience will cause damage. Have you tried asking your son about the voices he hears? Has he tried dialoguing with them, asking why they are there and what they want?

  • Man, I remember what snow days were supposed to be: you got up, saw the feathery ice patterns on the windows, got really excited and turned on the radio, listening to see if you’d hear the name of your school on the list of closures. And then you’d get so excited, and quickly finish your breakfast and get in your coat and snow pants and boots. And then you’d grab the sled and hit the best hill with the fewest trees, and the kids would play outside in the SNOW and make snow angels, and build forts, and throw snowballs, and knock down icicles. That’s what snow days are for. Now stuck in front of a screen.

  • Kinda feels like an episode of Whistleblower reading this. Good job, Juile- on writing it, on investigating, on keeping good records, but especially on being a voice against systemic abuse. Thank you for taking on the heroic duty of standing up for what’s right.

    And… I almost missed this blog. Yours seem to get posted with very little time to be read, commented on, discussed before the next blog pushes you off the stage. I wish MIA would give *each* blog its due.

  • I been thinking about your cat situation, Kate. They have those gravity-fed dispensers for food and water. I have 2 cats and it’s almost two weeks from full to empty for the food. I’ve never let the water reservoir get below 1/2 because one of my cats is a messy eater and drops crumbs into it, but they have ones that actually circulate/filter the water. We keep 2 litter boxes for them- they prefer the one by the door, so that one gets icky first, and then they move on to the one in the bathroom.
    If you were able to do these things, do you think you’d be able to take care of a cat again? That way, kitty would be lonely but otherwise un-neglected even if it did take a few days for someone to come be your back-up.

    I so want you to have your kitty back. Our animal companions give us so much love, comfort, and make it all bearable. You need that; you deserve it. It saddens me to think of you doing without.

  • Sera,
    Thank you for putting out this blog. What you’re feeling/describing just sounds so much like what the system does- attend (perhaps) to what you say, the words so carefully chosen to articulate exactly what you mean and not something else… and then hear almost exactly the opposite of what you said. It’s another way the system silences. This is me empathizing with that experience, and offering a pat on the back.

  • Thank you for sharing your story, Lauren. You are in very good company! There’s really good survivor-led support networks online to help you get through the withdrawal while tapering off. Best of luck to you.

  • But how do I warn others without coming across as unbalanced myself?

    Well, that depends on whom you are addressing:
    If you are having a conversation with a fellow parent, you will be thoughtful of this as you speak with conviction and facts. This human-to-human interaction will likely go well, as they will likely see you for you: a caring, concerned parent who’s been there trying to give others the benefit of their experience. A lighthouse beacon warning of danger, so long as your message is not so bold as to be blinding.
    However, if you are attempting to dialog with the system, at any level, you will encounter an agenda, and you will encounter tactics they consistently use to advance their agenda. One of the classic tactics is to attack not the valid argument being presented, but rather, attack the credibility of the person making the argument. So, regardless of your efforts, it is establishment strategy to paint you as “unbalanced;” when this happens to you, see it clearly for what it is and do not take the bait. Rather, calmly redirect back to the point at hand, managing this tactical behavior as you would a toddler’s tantrum.

    That’s my best advice on how.

  • The sexism is only 1 facet of the problem, Elizabeth. The biggest slap in the face comes, as you found out yourself, when you seek legal redress and are told there is none because the doctor’s actions fell within the standard of care. They all endorse each other’s malpractice and call it their “standard of care.”

  • Hey Someone Else, have you ever thought of starting a support group, since you can’t find a good one? I think you’re onto something. If you’re leading it, setting it up, you could set the ground rules, the focus, etc. You might consider whether you’d want to be consciousness-raising, planning activism, and such in addition to facilitating the members’ sharing of their experiences and feelings. Just a thought.

  • olhead said: “P.S. Being a stickler for semantics I would add that these are not “our” social policies unless you identify with the ruling class; these are their social policies.”

    I DO appreciate that! Thank you for woke-ing my vocab! Lemme just fix that wording: should’ve been “America’s policies…” rather than “our policies…” because frankly, I cannot in good conscience claim as my own this country that America has become. And the thing about eschewing the elitism, too. 🙂

    you do get me, buddy.

  • I understand that the physicians doing this research have the best of intentions, and that they believe the data they are generating will be used for good purposes, or that is at least their hope. But that Pollyanna viewpoint is at odds with the actual reality of health “care,” at least here in the US. In Scandinavian countries, there is a much bigger sense of communal responsibility, not the toxic individualism of the US. The cultural response to this tidbit, for instance, is vastly different:

    “After the WHO released its World Report on Violence and Health in 2002, Butchart became acutely aware of how a history of child maltreatment was an important risk factor for violence.”

    Unlike Scandinavia, the US is more likely to use this info against the adult survivors of child abuse. Reveal that you were routinely subjected to “maltreatment” (isn’t that a nice, safe word?) as a child, and you will be forever branded as someone the community must be protected from. Our social policies are not driven by compassion, or a sense of responsibility for one another; no, they are driven by fear and control, and that situation is only getting intensified. The fact the CDC named their survey the Behavioral Risk Factor Surveillance System (BRFSS) is chilling. So that’s on the societal level.

    On the personal level, when somebody asks you these ACE questions, do your own risk assessment. Ask yourself: why do they want to know this about me? Is it in my best interest to disclose? or to lie? or to refuse to answer? ?How will divulging this information effect the health care I will receive?

    When Patty (the patient in the article) made the connection between the molestation and her weight gain, what did disclosing that info get her? Psychiatry, of course! I daresay she’d have been MUCH better off if she’d kept that revelation to herself in that moment. She could have used it to understand herself better, to find healthy ways of feeling safe in her own body. A course in self-defense, perhaps.

  • Rachel,
    I’m so glad your parents finally puked up the kool-aid. I remember when you feared they never would. You were very smart to taper off the poisons without anyone being the wiser, and only sprung it on them after you’d been clean long enough for them, to remark on your vast improvement.

  • I used to coordinate services for families with developmentally-delayed kids, mostly autism. There has been a loosening of the criteria, and many parents sought that dx for their child in order to force the school system to provide services; it also got them other forms of much-needed support from our agency, like respite care, specialized daycare and summer camp. So, that does explain some of it.

    But, I cannot tell you how many families had the exact same autism origin story of “My baby was perfect, hitting all the milestones, talking, affectionate and engaging. And within a day or two of getting the MMR shot, it was gone. My child has not returned.” Not just my caseload. Every caseload. A mountain of anecdotal evidence that I personally find infinitely more reliable than any official study. When you have watched the pre-MMR videos of these kids, then seen the devastation in its wake, its just undeniable that the shot is somehow implicated. I’ve seen enough evidence with my own eyes; nobody will convince me otherwise.

  • “Thirty-eight participants were then randomized to read one of the two articles and take the test that came with the CME module. Twenty-three of those participants were asked to summarize the main points of the article, and 15 were asked whether they thought they received the industry article. “

    Why did they even bother doing this study?? They only recruited 38 participants! A study with n = 38 is barely above anecdote, the results easy to dismiss as incidental, nowhere near conclusive evidence of anything. And then, instead of having ALL of them summarize the main points AND guess whether the article was industry-funded, they split the 38 into two groups, n = 23, and n = 15. Pointless!

  • you said:
    “If we are going to practice a non-authoritarian therapy which empowers our clients, we are going to have to transform ourselves to become co-creators with our clients…”

    I do not believe that someone can shed the habit of authority while simultaneously wielding its power. It is your default position, and will be unless it is unavailable to you. If you really and truly wanted to place yourself on an even level with those you purport to “serve” or “help” you’d give up your license and do your listening and “helping” as a true peer, and discard the safe comfy cloak of authority. Not jusy you, Hugh, but all the “helpers” who make these claims.

  • I read it.
    Feels Icky, in a way I can’t quite put my finger on. I don’t disagree with Alex, but his comment doesn’t quite capture why this piece feels so icky. These authors did a similar conversational-type piece awhile back, and it felt icky too. I wish I was feeling sharp, so I could be eloquent and accurate, but for today, “icky” is the best I can come up with. Maybe others will hit on the right words to describe it; if so, I will echo theirs.

  • You are right KS, about the pharma companies, of course. But I do not let prescribers off the hook They are wielding a very dangerous tool, and there is no excuse, imho, for not feeling the gravity of the responsibility that ought to come with. I remember as a teen, when all my friends were getting their license I had already bought myself a car but I put off driving because I felt the weighty responsibility of wielding that machine– I could kill someone with it. Drugs should be considered with that much gravity, but are handed out like candy. So, no, I expect more from the people who seek that level of power/responsibility.

  • Let’s get one thing clear, s_randolph:
    Marci did not murder her daughter; the drugs that made Marci “psychotic” and twisted her thinking so much that she felt killing her was the only way to protect her are what murdered that child.

    “Debt to society”? Really? If anyone in this scenario owes a “debt to society,” it is the prescribers whose poisons murdered this child. Place the blame where it belongs.

  • and leaches excrete a very powerful anticoagulant that makes them incredibly helpful in re-establishing blood flow to a re-attached finger or other situations where blood flow has been compromised and needs a boost, frostbite and such. I have read of this, but have no personal experience…

    However… I saved my wife from certain leg amputation by treating the MRSA lesions on her shin with medical maggots. We got them shipped direct from the lab where they were grown, with a Dr’s prescription. They excrete digestive enzymes that not only break down the dead tissue, but are also amazing antibiotics- delivered directly into the wound! She also had a prescription antibiotic, but it was not effective. We know this because there were a couple times when she had to go a day or two without “the critters” (sometimes they run out at the lab and need to grow more larvae) and each time, the wound got red, inflamed, hot, painful, and within an hour of getting the new batch of critters in the wound, those symptoms would resolve again.

    People are too quick to dismiss the old ways of healing.

  • I had always assumed that military suicides were due to moral injury, that these individuals had either done or witnessed atrocities of war that left them unable to live with themselves. But apparently not (or not anymore?):

    “Many of the cases are young Marines who have not deployed overseas and have not been in combat — a situation that has been seen in other branches of the military as well. “

    The military culture itself is killing them.

  • Barbara,
    When you have a set of fucked-up family dynamics that others can’t/won’t/don’t see, it can be hard to get the understanding and validation you need from people close enough to think they know the situation. You are more likely to get that from total strangers– like from some of the folks here.

    Also, grieving the loss of someone you were conflicted with can be much more complicated than grieving someone with whom you had a mutually respectful, loving relationship. I think that’s, in part, because there’s not the repository of good memories that keeps the good things you did share alive for you; it’s slim pickings. You gotta salvage from whatever’s left. Another part is losing the possibility for anything ever to get better, of building something new from the ashes. They die and those dreams die too. And then there’s the question of where to put all those unresolved feelings. Ranting at a headstone just aint the same…

    At least, that has been my experience.

  • Aw, Kate, your cat. I’m so sorry. My heart breaks with you, and tears are rolling down my face as I type this. You keep getting kicked, your supports getting kicked out from under you (damn that therapist!).

    I don’t see you in the ways you describe at the end of your comment, Not At All. I don’t imagine that any of the other regular commenters here that you have connected with see you that way either. I see you as someone who is still trying to be okay, still trying to find some enjoyment in life and reasons to keep wanting to. I see you as part of my tribe. I see you as a potential friend (when I let myself feel social). I see you, Kate. You are not alone.

  • That would fly if everyone were on the same footing, but that is not the case. You are conveniently ignoring/dismissing the enormous power differential between the two groups (which, btw, most of us would NOT characterize as ‘sick’ and ‘not sick,’ and the fact that you do is very telling): one group has the power to strip the other group of their civil and human rights. As long as this is the case, there is an inherent us v. them dynamic; survivors didn’t put it there. To paraphrase Animal Farm, all humans are equal, but some are more equal than others.

    Wanna be really fascinated? Go get yourself a nice juicy SMI label and walk a mile in our moccasins, doc. See whether your equal humanity gets respected, or acknowledged. See how fascinated you are by how quickly you get othered, maligned, infantilized, disregarded. Write it up for scientific research.

  • “I think that the War on Drugs was a pushback, in the early 80s led by the Reagans, to the Young People’s successful effort to end the war in Vietnam in the 1970s. The culture was angry at young people in the early ’80s; so no wonder the DSM began to expand exponentially.”

    Thanks for pointing that out, johnchristine. I’d never put that together before, but you are onto something. Psychiatry as retribution for (and the reining in of) young people’s challenging the illegitimate authority and pointing out the hypocrisy of their parents’ generation and the powers that be; also for their exploration of consciousness, spirituality, and experimenting with substances that can expand those aspects of self and society.

  • One goes to a doctor, the doctor is almost required to intervene, whether that is drugs, procedure, device, etc.

    Which is why every person should practice their assertiveness before setting foot in a medical office: saying “that’s none of your business” to intrusive queries, to screenings; and No to un-informed consent- make them give you every scrap of info that they’re required to. Make sure you are clear on whose agenda you are there to serve, and don’t be persuaded into theirs instead of yours.

  • As Rachel and then kindredspirit pointed out, it’s a common story of the assembly-line conveyor belt that can lead to a “bipolar” dx.

    Reminds me more than a little of reading up on childbirth back in the day when I was having babies. One of the best pieces of advice for avoiding unnecessary surgery (aside from birthing at home, of course) is to refuse the earlier interventions. So when I went into labor with my first child and arrived at the ER and they went to put in an IV, I refused. I did not climb up on their conveyor belt by allowing that very first unnecessary intervention. Women before me sharing their childbirth horror stories is what allowed me to understand the conveyor belt that leads to the scalpel and steer clear.

    Sounds to me like Rachel wants to gather stories that demonstrate the conveyor belt that leads to a “bipolar” dx so people can be aware of it and refuse that very first step onto the conveyor belt. I steer clear of it by never allowing such “screenings,’ and answering questions about my thoughts/feelings with “that’s none of your business,” but a lot of people don’t know any better.

    I don’t see any gaslighting or fear-mongering in any of this. It’s no different than a woman with the belly scar of unneeded surgery wanting to warn other women of childbearing age about the insanely high rate of cesareans and how doctors manipulate women into accepting it for their body, their baby.

  • There could be a million informed consent laws on the books and they are all nullified by those “Consent to Treatment” forms that are basically carte blanche, stating you consent to whatever they deem necessary. I ran into one recently that explicitly stated that nothing could be stricken from it or amended “without approval of the Board.” As long as they get to pull that shit, we are all at risk whenever any kind of medical care is needed.

  • This is certainly evidence of how well their propaganda campaign has worked. The kiddies have absorbed the message that if they have any deep-felt, intense, unpleasant feelings there is something wrong with them and they need to seek help.

    Add to that the whole standardized testing thing. Even before No Child Left a Dime ramped up the pressure on kids (and teachers) and created “teaching to the test,” the very format of multiple-choice tests kills the thinking process, re-shapes it into guessing well. The only options are the ones presented, with no opportunity to self-generate an answer. There is no opportunity to look at the problem from any other angle than the one intended by the people who wrote the test. The “right answer” (and there’s only ever just one) does not flow from a process of evaluating the information available to come up with a solution and building on one’s mistakes, the way natural learning occurs. No, it is provided for you among other “wrong” answers that kids are taught to dismiss by process of elimination.
    Then there’a all the social interactions at school, and all the possible ways for those to go badly, with teachers, admin, other kids.
    And kids are no longer allowed to just wander into nature and spend time alone exploring, inventing, just watching the breeze, because now that is considered neglectful and unsafe parenting.

    There’s no place for a sensitive, insightful kid with a mind of their own; they will be intervened upon. They’ve been programmed to think they need it.