Posted on June 21, 2015 in Body Language Calm Daily Life Mania Photos Travels - So Cal
Two doses of Xanax in succession seem to have brought me out of the mania. I would rank myself at a six on the zero to ten point scale that we use in our support group. Colors don’t seem as bright, I am not attracted to every woman that I meet, and my driving is mostly good.
When I went hiking yesterday, I found myself pushed to the point of exhaustion. I carried more than anyone because I was a group leader and needed to port a first aid kit, extra water, etc. but my bones could not take it this day even though I took a harder hike on Thursday night with no ill effects. I got back from Vulture View all right after a couple of people took some of the weight off my back, but I was weak for most of the day. The message I am drawing from this is to get back into my routine of exercising more. So on Tuesday, I am going to do the Dreaded Hill hike again and maybe again on Thursday with some variation.
Today we went with a friend to Bunnyhenge and Fashion Island in Newport Beach to mark Solstice. The worst thing I did was sing some Tom Lehrer songs on the way back, so I am confident about being on the mend. The weakness on the hike worries me more than the hypomania at this point: I wonder if it was the Xanax?
Posted on June 19, 2015 in Agitation Mania
The whole business in Charleston has brought me out of my equilibrium and into the high, holy state of mania. The signs are clear: a brilliantly clear feeling of energy, combativeness, difficulty dealing with difficult people, the color red seems unusually intense, and a slight shaking that no one can see but I can sense. More correctly, this is a hypomania because I have not launched into paranoia — though I intellectually appreciate that my neighbors will not take kindly to my living with this illness, I do not think they are reading my mind or seeing through its invisibility; nor do I feel that I am indispensable, a great gift to humanity.
I posted a photo to Instagram identifying my face as that of mania. One friend replied, “You look ordinary”. “Yes, that is the point. I have an invisible disease.”
Posted on June 17, 2015 in Fraud Medications
Alternative medicine is filled with people filled of warm and fuzzy, right? Not Truehope. They have written Natasha Tracy a letter to the effect that if she doesn’t take down a series of articles that she wrote documenting her experiences and opinions about their product, they will sue.
I have watched Andy Behrman (aka Electroboy) speaking against the dangerous effects of Abilify when it is used as a mood stabilizer for a couple of years now. Now, Andy might correct me, but I haven’t heard him announce that he has received any letters threatening court action against him. Nor have I heard anyone else who has declared that certain medications haven’t worked for them or given them harmful side effects complain about harassment from Big Pharm’s lawyers.
Proponents of alternative medicine rail against the profits of Big Pharm, but what they don’t tell you is that their end of continuum rakes in $4 billion dollars a year; and, what is more, when they call themselves “homeopathic”, a 1938 law protects them from having to conduct clinical trials. Scientists have nevertheless tested vitamin therapy several times over the last few decades. Every time, vitamins have worked no better — or worse — than a placebo for treating mental illness. A couple of supplements have proved efficacious, however: N-Acetyl-Cysteine complements lamotrigine well and fish oil and flax seed oil have a moderate effect on depression. So Science isn’t against finding alternatives to Big Pharm’s meds; it just expects them to work.
The “research” that led to Truehope is this: a hog farmer fed a certain vitamin combination to his pigs and thought it made them happier. He then marketed it as a product which could be used to treat mental illness. He has accumulated testimonials from people who claim that it works for them, but aside from one psychiatrist who uses unknown techniques to vet these claims, he has funded no reproducible clinical trials.
My testimonial is this: I have known a few people who tried it and they swore — despite the fact that they were buzzing like an old light bulb with mania or suffering from depressions as deep as the doodoo on a hog farm — that it was helping them. I don’t trust anecdotal evidence, even when it agrees with my own views. I will sometimes cite them, but only as illustrations of statistics. (And I warn people when they should be careful — for example, carbamazepine helped quell my manic storms, but statistics show that it doesn’t help everyone.)
Natasha’ crime seems to be that TrueHope didn’t work for her. TrueHope is threatening to sue her for slander, probably hoping that her relative poverty will cause her to back down. This blog takes the position that this bullying underscores the flimsiness of TrueHope’s claims. It will now be up to them to prove in a court of law that their product works; this means they will have to perform some actual science. I would like to see that day and I look forward to the line of scientists waiting to sit in the witness chair who will skillfully rebut TrueHope’s ongoing fraud.
Posted on June 17, 2015 in Psycho-bunk Stigma
This is adapted from an article about 11 Ways White America Avoids Taking Responsibility for its Racism. It didn’t take much editing to make it relevant to those of us who challenge stigma for the mentally ill — not much at all. I see the same games being played all the time in certain advocacy groups “for the mentally ill” to prevent and avoid frank discussions among caretakers and patients about stigma.
Posted on June 16, 2015 in Bipolar Disorder Psycho-bunk Reflections
*UPDATED*
I was scolded again for a variation on the “I am bipolar” line, this time for using the word “schizophrenic”. “I am not my disease” my attacker said. “I am diabetic and bipolar,” I replied. “I am not my disease, either.” I asked her to show me a study that showed that this self-identification was harmful. Silence. Then she denied that she had attacked me; I made it plain and clear that she had; and I told her to “own it”.
No neurological link has been found to show that how we self-identify has any effect on our recovery. Where did it come from? Some therapist who had read Frogs into Princes, perhaps? I had one who corrected me every time I called myself “bipolar” which disrupted my train of thought. In the end, she dropped me for not being able to reform to her satisfaction. I was concerned about anger issues and if there is one thing I got out of that experience was being able to hold my peace when someone was being an arrant ass.
Listening without judgement is the hallmark of good mental health first aid. I have often listened to people who said some horrid things and who used strings of profanity long enough to hentai Henry Miller and strangle him several times over. I said nothing. I knew that they were talking about their pain. So why did my therapist think it was appropriate to waste our sessions correcting me? I never thought to ask her for studies — that realization came later when I actually looked for research on the issue and found none. From my informal observation of people in my support group, I haven’t seen people who say “I am bipolar” go spiraling into episode any more than those who say “I have bipolar disorder”. I suspect my therapist at that time had read or heard something as unattributable as the contention that 90% of bipolar marriages fail.
If she had looked it up in a dictionary, she would have found that schizophrenic and bipolar are adjectives. I half agree with her about the harm, but only so far. When some newspaper writes about schizophrenic relations between two nations or some boyfriend whines about his bipolar girlfriend, the terms are used inappropriately. But it is appropriate usage to say I am a bipolar man or I am a bipolar photographer or, simplest of all, I am bipolar. It carries nothing of the weight of the club that was used to castigate me.
Sane privilege may explain why therapists have been so quick to grab onto this. It lets them define how we may call ourselves. When I saw a woman being shamed for calling herself bipolar at a class a few weeks ago by a social worker, I saw a medical professional putting a patient “in her place”. “We aren’t our disease,” was the argument then and always.
Yes, but the disease is part of what makes us who we are, just like white, middle-classed, male, and diabetic help form the gestalt that is me. I don’t reduce myself to any one of these, but the combination is my identity. Knowing that I am bipolar is part of what it takes to understand me, like it or not. I get to decide what I present as my face to the world.
So why do some patients lash themselves to the mast and ram their ships of mind into those of us who “err”? Desperation is one thing that comes to mind: therapists and self-help book writers have convinced them that if they do this, they will be better. Fear of stigma is another powerful motive — they have heard outsiders use the phrase far too often as a slur. But I am an insider. Why choose me? Why am I being blamed for perpetuating stigma?
I can only guess by the origin and its effects. First, I suspect that it originates with people who do not live with the disease themselves, who feel left out when we differentiate our identifies and our interests as separate in some ways from theirs or who were upset by the slow progress of some of their clients. They might go so far as to call themselves “human beings” to avoid all the nasty baggage that comes with my calling myself white, middle-classed, bipolar male, which is to deny my uniqueness, my privilege and nonprivilege, and my inclusion in certain larger categories. They get the same benefit from hectoring us without acknowledging their superior position as medical professionals and caretakers as white people do when they say that despite all the unchecked benefits they get from being white and their demonization of poor black people that they are not racist.
Second, it puts the blame for our illness on us. By referring to ourselves in this way, the logic proceeds, we are making ourselves sicker and more dependent. It is not the fault of caretakers or therapists or psychiatrists or other mental health professionals or even of the disease! We engender our own problems by our use of language! This line of reasoning leaves us spinning in the wind and makes us feel guilty for a condition that we had no part in creating.
Third, it breaks those of us who are afflicted into warring factions, arguing about something that isn’t important. We help them control us. One can liken this to the relationship between the upper class and the working classes. High above, there are millionaires living in mansions. The working class lives in squalor. They would resist and attack the privilege of the upper classes, except that the latter have recruited some of the middle and working classes to serve as police. Police receive some special benefits such as the right to violence, but are otherwise little different from the working class people who they club. There’s not much difference between me and those who scold me for my usage of the word “bipolar”, but the former are all too willing — for next to no money if any at all — to do the work of the therapists and other caretakers in preventing a consciousness from forming.
Fourth, fighting about this petty issue keeps us from focusing on larger, more important issues like housing, adequate access to medicine, and the kinds of stigma that really do hurt. We who are mentally ill don’t fear each other, but we do fear what the sane can do to us and so we bicker amongst ourselves while letting their control over us go unchallenged.
A new consciousness of ourselves as we relate to our illnesses is required here, one not founded on silly semantics, but on the common ground we hold with others who have our illness. I stand up whenever I see someone abusing someone else for saying that they are bipolar or schizophrenic or autistic because, yes, a piece of me is my disease. Understanding that makes me less likely to let my guard down when it comes to taking the meds. Finding that same disease in others makes me feel less alone. Sharing our experience makes us stronger and better able to state what we need and not what some therapist or caretaker thinks we need.
This squabble needs to end. Let accept our diversity and our commonality.
A similar silliness occurs over the use of the word consumer versus patient. I find consumer stigmatizing because it implies that my diagnosis is just another product on the market. What do I consume? is what a friend of mine asks. No one has a legitimate answer except to make the suggestion that calling ourselves patients somehow mauls our consciousness. Idiots.
Posted on June 16, 2015 in Stigma
The lunchtime speaker at the Meeting of the Minds was barely audible, but sounded good from the snatches that we caught here and there. Because engagement was difficult, many of us at the table gave up and surfed on our cell phones.
Among our party was a woman. She was shy and simple, but had a fresh smile. Now and again, she would say something, sometimes to the point of discussion and sometimes entirely out of context. What I admired in my table mates was that we did not ignore her or try to act as if she were some crazy and embarrassing aunt at a holiday dinner, but always acknowledged her and let her take part in the conversation.
I think this is what is meant by living a life free of stigma. You take the mentally ill as they are, not conceiving of or treating them as children, but as full participants in life. This woman was just trying to be one of us. She reached out and we accepted her for it.
Posted on June 15, 2015 in Bipolar Disorder Medications Video
Posted on June 14, 2015 in Accountability Courage & Activism Human Rights Stigma
I won’t say that Tim Murphy’s bill is completely without merit. That would ignore improvements such as eliminating the 190 days lifelong psychiatric care cap for Medicare/Medicaid and allow us to use Medicare at larger inpatient facilities. It makes it easier for psychiatrists to volunteer at mental health centers. It is about time that anti-psychiatrists stopped being in a position to make policy. Pete Early at The Mighty sings the praises of Murphy’s Law (where everything that can go wrong is guaranteed to happen). Here is my counter-list of why it is a bad law and why we need a better alternative.
Posted on June 13, 2015 in Class Insurance Psycho-bunk
When you add all the provisions of the 175 page Families in Mental Health Crisis Bill together, the answer is Zero. Murphy’s Law is a caretaker’s bill. I have nothing against compassionate caretakers, but some seem to want to control the lives of their loved ones down to the toothpaste they use to brush their teeth. Murphy’s Law reorganizes the federal mental health bureaucracy so that it is subject to Congressional politics; it erodes HIPAA protections (claiming that caretakers have no access in emergencies to patient records which is not true); it requires states to implement forced medication programs; and, it is the harbinger I have no doubt of privatized mental hospitals. It is anti-patient. And it stands in opposition to the Recovery Movement.
Proponents disingenuously claim that people like me want to keep the status quo which does nothing for the most severely afflicted, the jailed, and the homeless. One word: Bullshit. I am among those who call for real homes for the homeless where they can achieve the stability to maintain a standard of self care. I note that patients are often prescribed medications like Abilify and Latuda in the hospital — which work for them but which they can’t afford — even with health insurance — when they are discharged. I note that police are overworked and often respond in a way which ignores their training for dealing with the mentally ill when they are exhausted. I observe that Laura’s Law — which allows those who are brought in to devise a treatment program that suits their beliefs and conditions — has resulted in more patients choosing medication. Studies show that coercion does not work. Demolishing HIPAA will cause some patients to avoid treatment because of privacy concerns. Is this helping the homeless? Let’s put together a scorecard….
Posted on June 12, 2015 in Dreams
A cult is kidnapping children and turning them into devotees using computers. The children preach a message of simple life, but the cult is collecting millions of dollars. I follow one child who, when she is found, doesn’t want to leave the cult. The cult talks her into accepting that she will be brought up differently, wearing special clothes, etc. She has been with them for two or three years before she is found. I explain to her what the cult is really up to, but she runs away and disappears on a hillside of tall grass that comes up to my chin.