One of the most important things I've learned in my Lyme journey is that not all instances of a given symptom or behavior are the same!
When someone is hyperventilating, it does not always mean they are having a panic attack! They are not always able to stop it. It could be from chemical poisoning. It could be from a number of things.
When someone yells or is violent, it does not always mean they chose to do it, they have anger problems, or that they should be punished. They could have neurotoxicity and severely lowered irritation thresholds. They might not even be that upset. On another day the same upset might not have even registered with the other person or even with themselves.
We need to be more subtle and see things in CONTEXT of the individual and their case history.
Medicine is getting TERRIBLE, fucking terrible at doing that. There are flowcharts of symptoms and test results to reactions. And there is less and less room to learn about the individual.
- - -
Thursday, June 21, 2012
It's a threshold problem, not an anger problem
It's funny, but the reaction I get to the occasional times when I've been angry related to Lyme disease and nervous system assault is perhaps the MAIN thing in my life contributing to chronic low-level anger and shame.
Which then are probably the biggest emotional component contributing to any perpetuation of this behavior.
When are we going to learn as a society that saying "No, you're bad, you can't do that, you're a bad person, we're going to shun and punish you"doesn't really help?
What I'm reacting to is a comment this morning on one of my youtube videos, where someone said, "you assaulted a doctor and screamed in a psych section of an emergency room. the doctor did what she had to do."
Sure I can see how it can seem that way to the doctors. I'm sure they feel self-satisfied like they "did what they had to do," even though I got the sense from them that they felt guilty about it. They seemed shifty and embarrassed and looked at one another when I asked "What did you give me?" They lied to me and did not tell me about the Haldol and said they had given me only Ativan. Little do they know how much they escalated the situation. Had the doctor not CALLED ME CRAZY when I was having a documented reaction to permethrin, I would have gone home feeling reassured that my symptoms were not too dangerous and my insurance would have saved several thousand dollars.
It's like, where is the outrage that the doctors were overlooking a normal medical reaction, that of muscle problems and nausea from permethrin?
I just feel so angry that I had a brush with a system that is "always right," and that most people do not want to question.
Because I happened to have an intense reaction, suddenly everything the doctors did was "right."
let's take a step back: Hyperventilation can be a symptom of chemical poisoning from Permethrin:
http://symptoms.rightdiagnosis.com/cosymptoms/diaphoresis/hyperventilation/tremor-sall.htm
Here is the list of signs of chemical poisoning from permethrin:
http://www.rightdiagnosis.com/c/chemical_poisoning_permethrin/symptoms.htm#symptom_list
What are they going to do the next time someone comes in with neurological symptoms related to chemical poisoning? Call them crazy, agitate them, and drug them even more?
- - -
Basically I have to remember that regardless of what society thinks, I KNOW from my own experience that thresholds for behaviors and such can change drastically based on neurotoxicity.
Many people have not experienced these drastic changes in their thresholds.
It doesn't mean that there's not a component from my emotional state, my habits, my childhood, or patterns.
It just means that the thresholds do change, and at times they are so low that it's unreasonable to expect me to keep all my triggers below the threshold, especially when very minor things (one time, a person asking me to move over in the subway) can exceed the thresholds.
Basically, that's why I haven't had much success from normal emotional control methods. I have wanted to work mainly on the biological side, because I need the thresholds to be high enough that I have some time even to work with things or notice what is happening in order for any other methods to work.
With the Budwig diet and ozone and getting more oxygen and beneficial fatty acids into my brain, I've raised the thresholds a lot! Now I actually can understand what people mean about observing your anger or making choices about it. I didn't have that option before, when I was always inches away from melting down (while dealing with Lyme herxing in the past).
- - -
I guess I am really upset that people have interpreted a biological problem of SEVERELY LOWERED IRRITATION THRESHOLDS to mean that there is something bad about me.
They assume that the thresholds are the same for everyone, since theirs have probably never changed, and they assume I must be doing something really wrong with my emotions if I am getting "that angry."
What's funny is that often when I would scream or throw water or whatever, I wasn't even angry.
I was doing things that made it seem like I was angry, but I wasn't even that upset at all.
It was just that my thresholds were so low that even minor irritation, what you might feel if you were getting a mosquito bite or if you were slightly embarrassed or annoyed, was enough to provoke full-out shrieking (because my nervous system felt attacked by the combination of the endogenous neurotoxicity plus the small amount of additional irritation).
It's actually very rarely that I'm very angry. I can deal with a lot in an easy-going way.
That's an important point to consider.
It hasn't been an anger problem; it's been a threshold problem.
- - -
Having lowered thresholds isn't a character problem. My character and behavior might have been the same all along. The main thing that changed was 1) lowered thresholds and 2) my life has been pretty hard and frustrating with Lyme and I'm chronically a little bit stressed, and that probably lowers my thresholds for irritation from an emotional perspective.
- - -
Which then are probably the biggest emotional component contributing to any perpetuation of this behavior.
When are we going to learn as a society that saying "No, you're bad, you can't do that, you're a bad person, we're going to shun and punish you"doesn't really help?
What I'm reacting to is a comment this morning on one of my youtube videos, where someone said, "you assaulted a doctor and screamed in a psych section of an emergency room. the doctor did what she had to do."
Sure I can see how it can seem that way to the doctors. I'm sure they feel self-satisfied like they "did what they had to do," even though I got the sense from them that they felt guilty about it. They seemed shifty and embarrassed and looked at one another when I asked "What did you give me?" They lied to me and did not tell me about the Haldol and said they had given me only Ativan. Little do they know how much they escalated the situation. Had the doctor not CALLED ME CRAZY when I was having a documented reaction to permethrin, I would have gone home feeling reassured that my symptoms were not too dangerous and my insurance would have saved several thousand dollars.
It's like, where is the outrage that the doctors were overlooking a normal medical reaction, that of muscle problems and nausea from permethrin?
I just feel so angry that I had a brush with a system that is "always right," and that most people do not want to question.
Because I happened to have an intense reaction, suddenly everything the doctors did was "right."
let's take a step back: Hyperventilation can be a symptom of chemical poisoning from Permethrin:
http://symptoms.rightdiagnosis.com/cosymptoms/diaphoresis/hyperventilation/tremor-sall.htm
Here is the list of signs of chemical poisoning from permethrin:
http://www.rightdiagnosis.com/c/chemical_poisoning_permethrin/symptoms.htm#symptom_list
What are they going to do the next time someone comes in with neurological symptoms related to chemical poisoning? Call them crazy, agitate them, and drug them even more?
- - -
Basically I have to remember that regardless of what society thinks, I KNOW from my own experience that thresholds for behaviors and such can change drastically based on neurotoxicity.
Many people have not experienced these drastic changes in their thresholds.
It doesn't mean that there's not a component from my emotional state, my habits, my childhood, or patterns.
It just means that the thresholds do change, and at times they are so low that it's unreasonable to expect me to keep all my triggers below the threshold, especially when very minor things (one time, a person asking me to move over in the subway) can exceed the thresholds.
Basically, that's why I haven't had much success from normal emotional control methods. I have wanted to work mainly on the biological side, because I need the thresholds to be high enough that I have some time even to work with things or notice what is happening in order for any other methods to work.
With the Budwig diet and ozone and getting more oxygen and beneficial fatty acids into my brain, I've raised the thresholds a lot! Now I actually can understand what people mean about observing your anger or making choices about it. I didn't have that option before, when I was always inches away from melting down (while dealing with Lyme herxing in the past).
- - -
I guess I am really upset that people have interpreted a biological problem of SEVERELY LOWERED IRRITATION THRESHOLDS to mean that there is something bad about me.
They assume that the thresholds are the same for everyone, since theirs have probably never changed, and they assume I must be doing something really wrong with my emotions if I am getting "that angry."
What's funny is that often when I would scream or throw water or whatever, I wasn't even angry.
I was doing things that made it seem like I was angry, but I wasn't even that upset at all.
It was just that my thresholds were so low that even minor irritation, what you might feel if you were getting a mosquito bite or if you were slightly embarrassed or annoyed, was enough to provoke full-out shrieking (because my nervous system felt attacked by the combination of the endogenous neurotoxicity plus the small amount of additional irritation).
It's actually very rarely that I'm very angry. I can deal with a lot in an easy-going way.
That's an important point to consider.
It hasn't been an anger problem; it's been a threshold problem.
- - -
Having lowered thresholds isn't a character problem. My character and behavior might have been the same all along. The main thing that changed was 1) lowered thresholds and 2) my life has been pretty hard and frustrating with Lyme and I'm chronically a little bit stressed, and that probably lowers my thresholds for irritation from an emotional perspective.
- - -
Interaction of thresholds and triggers
I guess I am just extremely frustrated that people keep blaming me for a symptom that I don't have a lot of control over.
It's easy to point fingers and say "well you were violent" if you have never experienced Lyme rage yourself, but in theory it could happen to anyone.
And forgive me for getting it down to low enough levels where it only happens if I am experiencing severe neurotoxicity, retching, and having involuntary muscle contractions. When it used to happen regularly, it was obvious that it was something unusual. Now that I've increased my threshold through Lyme treatment and healing myself, it only happens on rare occasions when something bad happened to my nervous system AND I was severely triggered, so it can come across as some deep emotional problem, and there's all this shame, because it's rare enough that it seems plausibly to be just emotional, and the "excessively low threshold due to biological states" issue can be ignored much more than before.
Any time when I experience these neurotoxic states again, I forgive myself for the previous times when I've had Lyme rage, because I remember how these brain states make it so likely. They don't make it happen, but they really lower the threshold for how much emotional irritation is needed to provoke a sudden reflexive self-defensive movement.
The best way to understand it is that at times, the level of neurotoxicity makes the threshold so low that normal life events are likely to exceed the threshold. What do I do in that case? Stop going through life?
If my threshold is low, I certainly should avoid being around my boyfriend, going to the ER, doing anything that is likely to trigger me.
It's a matter of the interaction of life events and the nervous system threshold. Sometimes the threshold has been so low that I've screamed in public over minor things like someone singing to themselves.
Lately, my threshold is so high that nothing happens unless 1) something terrible has happened to my nervous system, and 2) I am triggered at the core with something I abhor, like being called crazy or being left suddenly/abandonment triggers.
So there are two ways to work on it:
A) Increasing the threshold, through nutrition and brainwave entrainment and helping the nervous system.
B) Decreasing the triggers, so that the triggers do not exceed the threshold.
- - -
It's easy to point fingers and say "well you were violent" if you have never experienced Lyme rage yourself, but in theory it could happen to anyone.
And forgive me for getting it down to low enough levels where it only happens if I am experiencing severe neurotoxicity, retching, and having involuntary muscle contractions. When it used to happen regularly, it was obvious that it was something unusual. Now that I've increased my threshold through Lyme treatment and healing myself, it only happens on rare occasions when something bad happened to my nervous system AND I was severely triggered, so it can come across as some deep emotional problem, and there's all this shame, because it's rare enough that it seems plausibly to be just emotional, and the "excessively low threshold due to biological states" issue can be ignored much more than before.
Any time when I experience these neurotoxic states again, I forgive myself for the previous times when I've had Lyme rage, because I remember how these brain states make it so likely. They don't make it happen, but they really lower the threshold for how much emotional irritation is needed to provoke a sudden reflexive self-defensive movement.
The best way to understand it is that at times, the level of neurotoxicity makes the threshold so low that normal life events are likely to exceed the threshold. What do I do in that case? Stop going through life?
If my threshold is low, I certainly should avoid being around my boyfriend, going to the ER, doing anything that is likely to trigger me.
It's a matter of the interaction of life events and the nervous system threshold. Sometimes the threshold has been so low that I've screamed in public over minor things like someone singing to themselves.
Lately, my threshold is so high that nothing happens unless 1) something terrible has happened to my nervous system, and 2) I am triggered at the core with something I abhor, like being called crazy or being left suddenly/abandonment triggers.
So there are two ways to work on it:
A) Increasing the threshold, through nutrition and brainwave entrainment and helping the nervous system.
B) Decreasing the triggers, so that the triggers do not exceed the threshold.
- - -
Validation and esteem as the most important factors in psychiatric treatment
I think what people really want and what they keep moving toward or trying to create is a place where they feel safe to express themselves fully in all their goodness and badness and still be accepted and part of the community.
Psychiatry, especially the peer movement, can provide this. It can provide a space where it is ok to talk about suicidal thoughts, where it's ok to hear voices, where it's ok to do the best you know how to manage your life and emotions and nervous system, and it's assumed that you are probably doing the best you know how.
A place where you are given options but what you do is up to you.
It is in this place of safety that people can feel comfortable trying other options. When they feel safe and that the outcome will be ok even if it's unpredictable, people can feel more safe trying a different coping technique instead of the one they normally use.
When people feel respected as they are, that they are good, then they have the life-giving self-esteem that helps to give people more energy an
Validation and esteem and accepting social support are some of the best "foods" for "good" behavior.
People need VALIDATION as a fuel for doing hard things. Change is hard. Validation for what people are already doing right and esteem help them to have the motivation to try change.
- - -
Psychiatry, especially the peer movement, can provide this. It can provide a space where it is ok to talk about suicidal thoughts, where it's ok to hear voices, where it's ok to do the best you know how to manage your life and emotions and nervous system, and it's assumed that you are probably doing the best you know how.
A place where you are given options but what you do is up to you.
It is in this place of safety that people can feel comfortable trying other options. When they feel safe and that the outcome will be ok even if it's unpredictable, people can feel more safe trying a different coping technique instead of the one they normally use.
When people feel respected as they are, that they are good, then they have the life-giving self-esteem that helps to give people more energy an
Validation and esteem and accepting social support are some of the best "foods" for "good" behavior.
People need VALIDATION as a fuel for doing hard things. Change is hard. Validation for what people are already doing right and esteem help them to have the motivation to try change.
- - -
I guess I've found another cause -- violent people.
This is a group that almost everyone sees as the "other."
They seem so far from us, so vile, so evil. Even people with mildly violent behaviors are shunned.
I've realized from being in this group myself that violent people are one of the most discriminated against groups in society.
This discrimination is justified by the assumption that violence is a choice.
It is so funny how we discriminate between things that are not choices, which we indulge, and things that are "choices," as though it were possible to tell this from the outside.
However, violence is not always that much of a choice.
In my case I've come to see that it's a combination of factors. Probably 80% biological/inflammation/disrupted nervous system, 10% my history, and 10% current frustration or mental habits/ruts developed when Lyme rage was worse.
It is so strange to have this huge range of symptoms, and to have one of the symptoms thought to be entirely my fault, and to see how differently people treat this one symptom.
Was my bad memory my choice? Was the intense fatigue my choice? Was
Because those things felt if anything more my choice than the occasional times when I have yelled or thrown water I was holding or on very rare occasions hit people.
In all of those cases, things happened before I had an idea of what I was doing, and I was surprised to see what had happened. Does that sound like choice?
I am just sick of feeling like a bad person, when I am just experiencing a sort of Lyme-related nervous system reflex.
- - -
Nonviolent communication as a better way to talk about Lyme rage
I had a realization last night.
While dealing with Lyme-related agitation, people have been approaching it in two ways that have not worked at all:
1) You have to stop doing this because it's not acceptable.
For people with bad childhoods, hearing this makes them feel more shame. Shame leads to more violence. Also, so much in my life is unusual already. What is the real motivation to stop doing something just because it's "unacceptable" when I have had to do so many other unacceptable things to survive? (Think of how people in poverty might think the same.) "It's unacceptable" is a terrible motivation.
2) Bad things could happen.
Threats.
3) It's bad for me. You need to stop doing something that's good for you, and make your life harder, because it's bad for me (often someone who has a much easier life than me and a much less inflamed nervous system).
But those responses rely on shame and blame and force.
What ways of talking about Lyme-related violence would be better?
A) Concern for the person experiencing it.
Believe it or not, people committing violence are victims or symptomatic, the same way as people with other "conditions" or symptoms.
It's a symptom that something is wrong, whether with a person's biology, psychosocial environment, or their ability to meet their needs in other ways.
In the case of Lyme rage, it feels terrible. It's harmful to the body. It's likely neurotoxic and probably destroys part of the brain. The effects can last for hours. It feels like it fries the nervous system.
It would be a much more effective way to handle it, to talk to people experiencing Lyme rage and say, "Wow, it seems like this experience is harmful for your body and really unpleasant for you. Let's see if we can decrease the propensity of your nervous system to having it happen, and if we can decrease the occasions that can cause it."
Focus on the well-being of the patient.
B) Ask people what they need. What unmet needs could be related to this last-ditch effort by their bodies to protect themselves?
C) Talk about the impact on others, not as a "should," but just for the person's information. e.g., here's how I feel, it's not your fault, but here is the impact.
Blaming and "shoulds" almost never work. what works is listening to people in a nonviolent way, showing that you are interested in their well-being and they are in a safe place where they can get their needs met, and communicating nonviolently about one's own experience.
- - -
While dealing with Lyme-related agitation, people have been approaching it in two ways that have not worked at all:
1) You have to stop doing this because it's not acceptable.
For people with bad childhoods, hearing this makes them feel more shame. Shame leads to more violence. Also, so much in my life is unusual already. What is the real motivation to stop doing something just because it's "unacceptable" when I have had to do so many other unacceptable things to survive? (Think of how people in poverty might think the same.) "It's unacceptable" is a terrible motivation.
2) Bad things could happen.
Threats.
3) It's bad for me. You need to stop doing something that's good for you, and make your life harder, because it's bad for me (often someone who has a much easier life than me and a much less inflamed nervous system).
But those responses rely on shame and blame and force.
What ways of talking about Lyme-related violence would be better?
A) Concern for the person experiencing it.
Believe it or not, people committing violence are victims or symptomatic, the same way as people with other "conditions" or symptoms.
It's a symptom that something is wrong, whether with a person's biology, psychosocial environment, or their ability to meet their needs in other ways.
In the case of Lyme rage, it feels terrible. It's harmful to the body. It's likely neurotoxic and probably destroys part of the brain. The effects can last for hours. It feels like it fries the nervous system.
It would be a much more effective way to handle it, to talk to people experiencing Lyme rage and say, "Wow, it seems like this experience is harmful for your body and really unpleasant for you. Let's see if we can decrease the propensity of your nervous system to having it happen, and if we can decrease the occasions that can cause it."
Focus on the well-being of the patient.
B) Ask people what they need. What unmet needs could be related to this last-ditch effort by their bodies to protect themselves?
C) Talk about the impact on others, not as a "should," but just for the person's information. e.g., here's how I feel, it's not your fault, but here is the impact.
Blaming and "shoulds" almost never work. what works is listening to people in a nonviolent way, showing that you are interested in their well-being and they are in a safe place where they can get their needs met, and communicating nonviolently about one's own experience.
- - -
Ugh, hard to get over trauma when people keep blaming me
It has been really hard dealing with the trauma of my interaction with what I'm now seeing as the prison-psychiatric system.
The reason is that people keep saying that because I hit the doctor (people like to call it "assaulted"),
There are many details that they are not considering:
-Why would I be calm for an hour at the ER, and then suddenly start screaming when the doctor came in and said "You don't have scabies, you're just anxious." Maybe it had something to do with what she said? Ya think?
-Drugs were not necessary. When I was held down for about a minute, I calmed down completely and they let me go and I was just sitting there talking with them calmly. They didn't need to do anything else.
-How about waiting at least 15 minutes to see if someone can calm down with non-drug means?
There is something wrong with a system that jumps to drugging people immediately without trying any other options.
Hell, there is something wrong with involuntarily jumping to a really extreme solution without trying less aggressive options.
There should be a range of options for possible escalation:
-Talk with the patient about how they are feeling.
-Turn off the lights and help them to calm down.
-Get a therapist to ask them what's wrong.
I guess the issue is that many people don't want to question the medical and psychiatric system. There's this groupthink that says, "This is what we have to do for the safety of hospital workers."
So we traumatize patients and act against their safety. It's a case where they are a minority and their rights don't matter, because the educated and largely white, neurotypical doctors' rights matter.
- - -
The reason is that people keep saying that because I hit the doctor (people like to call it "assaulted"),
There are many details that they are not considering:
-Why would I be calm for an hour at the ER, and then suddenly start screaming when the doctor came in and said "You don't have scabies, you're just anxious." Maybe it had something to do with what she said? Ya think?
-Drugs were not necessary. When I was held down for about a minute, I calmed down completely and they let me go and I was just sitting there talking with them calmly. They didn't need to do anything else.
-How about waiting at least 15 minutes to see if someone can calm down with non-drug means?
There is something wrong with a system that jumps to drugging people immediately without trying any other options.
Hell, there is something wrong with involuntarily jumping to a really extreme solution without trying less aggressive options.
There should be a range of options for possible escalation:
-Talk with the patient about how they are feeling.
-Turn off the lights and help them to calm down.
-Get a therapist to ask them what's wrong.
I guess the issue is that many people don't want to question the medical and psychiatric system. There's this groupthink that says, "This is what we have to do for the safety of hospital workers."
So we traumatize patients and act against their safety. It's a case where they are a minority and their rights don't matter, because the educated and largely white, neurotypical doctors' rights matter.
- - -
Tuesday, June 19, 2012
Suffering from an imagined similarity
It's starting to seem to me that a large percentage of the suffering in the world is not about what's actually happening, but about the fear that something that one thinks has happened before is happening again.
We react to the idea and not to what is actually happening. Like the snake/rope story in the Vedanta (which i have not read, but I have heard others talk about this.)
We react to the idea and not to what is actually happening. Like the snake/rope story in the Vedanta (which i have not read, but I have heard others talk about this.)
Good Psychiatric Survivor videos
It's so cruel that the main institution that handles people when they are dealing with trauma also traumatizes people.
Ted Chabasinski:
http://www.youtube.com/watch?v=Z3qulaD-jXQ&feature=youtu.be
Robert Whitaker:
http://www.youtube.com/watch?v=OTVfcekdoOI&feature=channel&list=UL
- - -
Ted Chabasinski:
http://www.youtube.com/watch?v=Z3qulaD-jXQ&feature=youtu.be
Robert Whitaker:
http://www.youtube.com/watch?v=OTVfcekdoOI&feature=channel&list=UL
- - -
Good decisions as a hedge against randomness
I've been frustrated with the randomness in my life. Random bad stuff happening to me and often spinning out of control because I am susceptible and small changes in my life can destabilize a balance that is fragile in the first place, especially now that I'm working during Lyme treatment.
However, I realized that when bad things have happened to me, there were often many bad decisions that contributed to the eventual bad event. And likewise with good things.
So it makes me comforted to think that if I keep making good decisions, I'll get somewhere, despite randomness.
Random events form a distribution, and then there's what I do with myself. I guess what I do needs to be strong enough to buffer against random events.
At all times, I should be doing enough to soothe myself, eat well, support my immune system, treat Lyme, etc. that 95% chance random events will not hurt me too much.
I guess that's part of the problem. I have been living on the edge, pushing myself to my limit, so that when even small things happen, it's the last straw for me and everything falls apart.
Where can I cut back?
- - -
I realized after posting this that the other thing that helps to buffer is having a cause or a goal.
That also helps.
- - -
However, I realized that when bad things have happened to me, there were often many bad decisions that contributed to the eventual bad event. And likewise with good things.
So it makes me comforted to think that if I keep making good decisions, I'll get somewhere, despite randomness.
Random events form a distribution, and then there's what I do with myself. I guess what I do needs to be strong enough to buffer against random events.
At all times, I should be doing enough to soothe myself, eat well, support my immune system, treat Lyme, etc. that 95% chance random events will not hurt me too much.
I guess that's part of the problem. I have been living on the edge, pushing myself to my limit, so that when even small things happen, it's the last straw for me and everything falls apart.
Where can I cut back?
- - -
I realized after posting this that the other thing that helps to buffer is having a cause or a goal.
That also helps.
- - -
Psych branch of the prison system
I've been reading a little about mind freedom and anti-psychiatry.
I guess this was spurred by realizing that my leg was not going to go back to normal without some professional help. My leg really got torn up/scarred/immobilized/muscle-imbalanced by the shot of a neuroleptic. I have some muscles that aren't working, others that are working too much. It's been depressing because I've had similar muscle injuries that, well, never healed. I'm still dealing with chronic shoulder injuries eight months later. I did find a bodyworker who did a lot for my leg (long story) and I will see her a second time this weekend.
But anyway, back to the anti-psychiatry. I guess this is something that's always interested me, but I had never been aware of being an explicit victim of the mental health system, and I stopped taking any psychiatric drugs around the same time that I started coming across anything critical of psychiatry, so it was never particularly "hitting home" for me. It's not a socially polite topic, and there was no real "hook" to draw me in. Maybe I subconsciously "othered" the people who dealt with the abuses of psychiatry, since they seemed like "crazy people," so I was less concerned about them. (Whereas when it comes to circumcision, which I talk about, it is very easy for me to imagine the sense of loss and violation of having had part of your body cut off. Or at least to get very upset about that idea. Perhaps because bodily integrity - having a body that feels more or less the same from day to day and isn't hurt by random things -- is very important to me, since I have sensory processing disorder and anything weird about my body bothers me a LOT.)
But who would have guessed, I now am in the middle of anger about psychiatry, because of a case where people did just about the WORST thing anyone could do to me:
-call me crazy
-provoke Lyme rage/neurotoxin rage while I was susceptible
-harm my body
-"rape" me by holding me down and doing something I did not consent to
-give me psychiatric drugs
-give me a neuroleptic
-while I am extremely sensitive to medication
-put me in a psych ward where I don't have access to my Lyme treatment
Honestly, the worst part is that they harmed my body. My leg and brain were feeling fine before this, and now they don't. Now I have months or years of work ahead of me to get them back to where they were.
I am scared because I don't know whether this will be a 2-month problem that heals pretty well on its own, or one of those other problems that never really heals, or one that I keep having until I finally find the right practitioner who can actually see the same problem I see. I often have a problem where practitioners can't even see the problem that is torturing me. I have to keep looking until I find someone who sees the same thing I see about my body. It's wonderful when I finally found the chiropractor who pointed out the bone strain in my skull before I even showed it to him, and helped to relieve chronic skull pain, or the bodyworker who diagnosed even more muscle imbalances in my leg than I had been aware of. It's great that there are people like this out there.
Anyway.
Back to what I was originally going to share:
http://www.antipsychiatry.org/e-mail.htm#whatsitlike
This is a great description of what it's like being in a psych ward.
Yes, you can get put in there for illogical reasons having to do with liability.
It's terrible, the overlap between police and psychiatry.
Yes, the experience of the psychiatry can be worse than the original problem.
Yes, people can be traumatized by psychiatric "care."
In fact, I would venture to say: It's not really psychiatry. It's a different branch of the prison system.
-One where there are no trials.
-Defendants get no representation and cannot defend themselves. If a doctor gives you a diagnosis, there's not much you can do to argue it.
-People are restrained in other means
Honestly, that's what it is, folks. Psych wards are a hospital branch of the prison system.
They are really not therapeutic because as the person says, you have to submit and do whatever it is you need to do in order to get out.
It is really terrifying. It's hard to relax in there or let loose or express your feelings because if you say the wrong thing you might not get out.
Also, much of what you say and do is recorded and reported on.
- - -
I guess this was spurred by realizing that my leg was not going to go back to normal without some professional help. My leg really got torn up/scarred/immobilized/muscle-imbalanced by the shot of a neuroleptic. I have some muscles that aren't working, others that are working too much. It's been depressing because I've had similar muscle injuries that, well, never healed. I'm still dealing with chronic shoulder injuries eight months later. I did find a bodyworker who did a lot for my leg (long story) and I will see her a second time this weekend.
But anyway, back to the anti-psychiatry. I guess this is something that's always interested me, but I had never been aware of being an explicit victim of the mental health system, and I stopped taking any psychiatric drugs around the same time that I started coming across anything critical of psychiatry, so it was never particularly "hitting home" for me. It's not a socially polite topic, and there was no real "hook" to draw me in. Maybe I subconsciously "othered" the people who dealt with the abuses of psychiatry, since they seemed like "crazy people," so I was less concerned about them. (Whereas when it comes to circumcision, which I talk about, it is very easy for me to imagine the sense of loss and violation of having had part of your body cut off. Or at least to get very upset about that idea. Perhaps because bodily integrity - having a body that feels more or less the same from day to day and isn't hurt by random things -- is very important to me, since I have sensory processing disorder and anything weird about my body bothers me a LOT.)
But who would have guessed, I now am in the middle of anger about psychiatry, because of a case where people did just about the WORST thing anyone could do to me:
-call me crazy
-provoke Lyme rage/neurotoxin rage while I was susceptible
-harm my body
-"rape" me by holding me down and doing something I did not consent to
-give me psychiatric drugs
-give me a neuroleptic
-while I am extremely sensitive to medication
-put me in a psych ward where I don't have access to my Lyme treatment
Honestly, the worst part is that they harmed my body. My leg and brain were feeling fine before this, and now they don't. Now I have months or years of work ahead of me to get them back to where they were.
I am scared because I don't know whether this will be a 2-month problem that heals pretty well on its own, or one of those other problems that never really heals, or one that I keep having until I finally find the right practitioner who can actually see the same problem I see. I often have a problem where practitioners can't even see the problem that is torturing me. I have to keep looking until I find someone who sees the same thing I see about my body. It's wonderful when I finally found the chiropractor who pointed out the bone strain in my skull before I even showed it to him, and helped to relieve chronic skull pain, or the bodyworker who diagnosed even more muscle imbalances in my leg than I had been aware of. It's great that there are people like this out there.
Anyway.
Back to what I was originally going to share:
http://www.antipsychiatry.org/e-mail.htm#whatsitlike
This is a great description of what it's like being in a psych ward.
Yes, you can get put in there for illogical reasons having to do with liability.
It's terrible, the overlap between police and psychiatry.
Yes, the experience of the psychiatry can be worse than the original problem.
Yes, people can be traumatized by psychiatric "care."
In fact, I would venture to say: It's not really psychiatry. It's a different branch of the prison system.
-One where there are no trials.
-Defendants get no representation and cannot defend themselves. If a doctor gives you a diagnosis, there's not much you can do to argue it.
-People are restrained in other means
Honestly, that's what it is, folks. Psych wards are a hospital branch of the prison system.
They are really not therapeutic because as the person says, you have to submit and do whatever it is you need to do in order to get out.
It is really terrifying. It's hard to relax in there or let loose or express your feelings because if you say the wrong thing you might not get out.
Also, much of what you say and do is recorded and reported on.
- - -
Thursday, June 14, 2012
The benefits and drawbacks of forgetting that your life isn't normal
You know how if you are in a net, things can just get worse if you struggle?
I think many of us dealing with hard situations tend to calm down and not test the limits much. We don't want to feel the nets or spiderwebs. If you don't try doing things you couldn't do anyway, you aren't reminded that you can't do them.
The up-side to doing this is that you can believe that your life is fairly normal.
But the down-side to this is that you can believe your life is fairly normal.
That's what I've been doing. I've been acting like it's normal to get exhausted working 25 hours a week, to eat only disgusting healthy food and no packaged food, not to be able to eat out, to have trouble doing social things like going to parties, and to have to spend a lot of time preparing specific foods, taking herbs, etc.
I've been assuming it's normal to get injured frequently, to be highly medication-sensitive, to take a long time to recover from injuries, if I recover at all.
You can get used to it, and getting accustomed to it is in a way adaptive.
However, it's also really depressing to think this is just the way life is. Life didn't used to be so hard. The things that happen to me on a weekly basis now used to happen maybe once a year before I got Lyme. The amount of coping requirements is up. Way up. Hell, it is so high.
There's something different about prolonged coping with small things. It's different than having one major blow and then recovering. Instead it's the tiny accumulation of little assaults, none of which is large enough to get much sympathy or even to help it register with you that "something hard has happened."
They come so frequently that you come to expect them. You don't have time off between them, since they overlap. It's this constant low-level coping with no rest for years.
But back to the maladptive side of adapting:
If you start to assume life just IS this way for you:
-You can lose hope.
-You can feel like you just deserve less than others, or are slated for more suffering.
-You get an ambivalent feeling about life.
Sometimes it IS good to remember life isn't this way for everyone.
Just now, I was thinking, Wow, I used to be able to work 40 hours more easily than I now work 25, and that was even when I had some degree of CFS before getting Lyme.
It's crazy to realize that some people would be able to do things that are totally impossible for me.
What would I do if I could do anything?
Ha.
I'd probably eat those artificially-sweetened yogurts. haha. they aren't good for you but they are delicious. the splenda-sweetened lemon and key lime pie yogurts?
I'd have a driver's license and rent a zip car to go shopping rather than having to wait for buses.
I'd eat far more packaged food, frozen dinners, etc. Cooking for yourself sucks.
I'd go listen to loud music a lot.
Be more social.
Drink alcohol (I seriously can't drink now, it makes me relapse. Weird because while I had Lyme I *could* drink alcohol without problems. It's only now that I'm doing better that I can't.)
It's actually relieving to realize that in some way, those are what I could hope to expect in my society. Lots more relief and things to make life easier and more fun.
That's what I'm missing: fun to balance out the work. My whole life is work, because I have to spend nights and weekends doing treatment and research and working on emotional problems and stuff, and I haven't connected with ways to really enjoy myself here yet. Well, hanging out with my partner is great, but we've both had scabies so we haven't seen much of each other in the past month. Blah.
- - -
I think many of us dealing with hard situations tend to calm down and not test the limits much. We don't want to feel the nets or spiderwebs. If you don't try doing things you couldn't do anyway, you aren't reminded that you can't do them.
The up-side to doing this is that you can believe that your life is fairly normal.
But the down-side to this is that you can believe your life is fairly normal.
That's what I've been doing. I've been acting like it's normal to get exhausted working 25 hours a week, to eat only disgusting healthy food and no packaged food, not to be able to eat out, to have trouble doing social things like going to parties, and to have to spend a lot of time preparing specific foods, taking herbs, etc.
I've been assuming it's normal to get injured frequently, to be highly medication-sensitive, to take a long time to recover from injuries, if I recover at all.
You can get used to it, and getting accustomed to it is in a way adaptive.
However, it's also really depressing to think this is just the way life is. Life didn't used to be so hard. The things that happen to me on a weekly basis now used to happen maybe once a year before I got Lyme. The amount of coping requirements is up. Way up. Hell, it is so high.
There's something different about prolonged coping with small things. It's different than having one major blow and then recovering. Instead it's the tiny accumulation of little assaults, none of which is large enough to get much sympathy or even to help it register with you that "something hard has happened."
They come so frequently that you come to expect them. You don't have time off between them, since they overlap. It's this constant low-level coping with no rest for years.
But back to the maladptive side of adapting:
If you start to assume life just IS this way for you:
-You can lose hope.
-You can feel like you just deserve less than others, or are slated for more suffering.
-You get an ambivalent feeling about life.
Sometimes it IS good to remember life isn't this way for everyone.
Just now, I was thinking, Wow, I used to be able to work 40 hours more easily than I now work 25, and that was even when I had some degree of CFS before getting Lyme.
It's crazy to realize that some people would be able to do things that are totally impossible for me.
What would I do if I could do anything?
Ha.
I'd probably eat those artificially-sweetened yogurts. haha. they aren't good for you but they are delicious. the splenda-sweetened lemon and key lime pie yogurts?
I'd have a driver's license and rent a zip car to go shopping rather than having to wait for buses.
I'd eat far more packaged food, frozen dinners, etc. Cooking for yourself sucks.
I'd go listen to loud music a lot.
Be more social.
Drink alcohol (I seriously can't drink now, it makes me relapse. Weird because while I had Lyme I *could* drink alcohol without problems. It's only now that I'm doing better that I can't.)
It's actually relieving to realize that in some way, those are what I could hope to expect in my society. Lots more relief and things to make life easier and more fun.
That's what I'm missing: fun to balance out the work. My whole life is work, because I have to spend nights and weekends doing treatment and research and working on emotional problems and stuff, and I haven't connected with ways to really enjoy myself here yet. Well, hanging out with my partner is great, but we've both had scabies so we haven't seen much of each other in the past month. Blah.
- - -
Saturday, June 2, 2012
Nonduality, hard to trust and accept satisfaction
It seems that the hardest thing is believing that we are free, that things are ok.
So we stay in our prisons.
Wat's the harm in believing? I can take risks. I like risk.
I hear something sometimes,
in the brain entrainment binaural beat tracks
in music tuned to A=432hz (I am converting my favorite songs in audacity now)
I see it in people
I remember feeling it
I know it's there. I know it exists.
In fact, I am pretty sure I know what all of this is. I have felt it, I remember it, I guess.
What I think is really going on, insofar as I can say that since nothing is final, is that basically what we think is life, in the foreground, is actually this interesting thing being played out on this screen that is entirely peaceful.
beneath or behind it all, there is just this quiet peaceful timelessness. it feels like "the end of the story." It has this strong sense of a search coming to the end, the "happily ever after" of a
THAT is the scary thing, really. Happiness. fulfillment. Not having anything to look forward to in the future.
It's a trade: do you want hope or satisfaction?
Hope is a thin comfort. It gets you by. I'm used to living on hope.
It's like formula vs. breast milk. Hope works, but it's not as good as it could be.
This is all such an exciting game. I guess the fun part is, well, if you can figure out what sort of game it might be early enough to enjoy some decades in a body knowing what might be going on.
I've kind of lost my shame because of things that have happened during Lyme disease, so I can talk about this stuff now.
- - -
So we stay in our prisons.
Wat's the harm in believing? I can take risks. I like risk.
I hear something sometimes,
in the brain entrainment binaural beat tracks
in music tuned to A=432hz (I am converting my favorite songs in audacity now)
I see it in people
I remember feeling it
I know it's there. I know it exists.
In fact, I am pretty sure I know what all of this is. I have felt it, I remember it, I guess.
What I think is really going on, insofar as I can say that since nothing is final, is that basically what we think is life, in the foreground, is actually this interesting thing being played out on this screen that is entirely peaceful.
beneath or behind it all, there is just this quiet peaceful timelessness. it feels like "the end of the story." It has this strong sense of a search coming to the end, the "happily ever after" of a
THAT is the scary thing, really. Happiness. fulfillment. Not having anything to look forward to in the future.
It's a trade: do you want hope or satisfaction?
Hope is a thin comfort. It gets you by. I'm used to living on hope.
It's like formula vs. breast milk. Hope works, but it's not as good as it could be.
This is all such an exciting game. I guess the fun part is, well, if you can figure out what sort of game it might be early enough to enjoy some decades in a body knowing what might be going on.
I've kind of lost my shame because of things that have happened during Lyme disease, so I can talk about this stuff now.
- - -
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