When are remarks “remarkable”?

Not long ago I was listening to the Heidi and Frank show on the radio. They were doing a show on OCD. I don’t listen often and hoped maybe it would be okay. After all, it was mental health awareness month, at the time.

No. It was a comedy bit. I realize that is their job. but they were making fun of callers and people they know. Calling them “Freaks and “Weird”.

I rarely respond to those types of things but I contacted the radio station and NAMI. I didn’t expect to hear back from the station. NAMI told me they don’t deal much with that diagnosis and to contact an OCD foundation. I passed on the info and let it go.

Now I see this article:

Mike Huckabee and Schizophrenia; NAMI Calls for Apology Over Supreme Court Remarks on Iowa Radio Talk Show

 http://www.nami.org/Press-Media/Press-Releases/2015/Mike-Huckabee-and-Schizophrenia;-NAMI-Calls-for-Ap

I understand Mike Huckabee is a Presidential candidate. Is that what makes him a good example of stigma? He called a man with no mental illness (Supreme Court Justice Roberts) “schizophrenic”. I don’t think that compares with calling someone with a disorder “Freak”.

I do think he should be called on it, like others in the media. The choice  just seems arbitrary.

Unseen Contributor to Teen Mental Illness?

It has been bothering me for a few years now. The surge in young teens who seem absorbed in mental illness.

I first noticed it after I’d had my iphone for a while. Probably over a year after (I was 18 when I got it). I’d been diagnosed when i was 17, and was probably 19 when I noticed. I was on instagram when I got the random desire to see if there were posts about mental illness on there.

And what I saw horrified me.

Kids as young as 12 were posting horrible photos. Typically it was just the cliche depressed quotes over and over again. But there were also photos of other things… there was “thinspiration” where people would post skinny girls who were their “goal” look in terms of thinness. And then there was the pencil test to determine if you really are thin or not, so people posted pictures of those. And pictures of thigh gaps. But I can’t relate to eating disorders, never had one and don’t think I ever will. Then there were ones that flooded my search and were even triggering to me- self harm photos. They were everywhere. I was horrified.
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Meeting of the Minds, 2015

Two weeks ago, I attended Meeting of the Minds. This is a conference that is held every year in Orange County, CA, for mental health professionals, first responders, patients (whom the conference calls “consumers,” but that term always sounds odd to me) and family members. These are the sessions I attended:

Accessing Mental Health Services in Orange County: This is the third year in a row that I have attended a session that had something to do with available county services. Why, when I could pick a different topic each year? Mainly because I wanted to see what might be changing in the wake of the Affordable Care Act. Two years ago, the session I attended was all about what we could expect from the Affordable Care Act, and, above all, how to get the word out to people who would be eligible for subsidies and get them to sign up. Last year, it was all about what was new with the Affordable Care Act, which mainly boiled down to people on Medicaid (called Medical in California) being able to get mental health services before they are in dire crisis (plus, since California isn’t one of the states that rejected the Medicaid expansion, more people can get Medical). This year was different; the changes from the Affordable Care Act have already happened, and the focus was not so much on what has changed as on what the services are, going forward. There were two sections to the session, one on Caloptima (the provider for everyone on Medical in Orange County – this varies from county to county), and one on the OC Links information and referral line.

As of March 31, 2015, Caloptima in Orange County had 730k members, up from less than 500k before the Affordable Care Act. There’s also a behavioral treatment program for autism spectrum disorder that’s new as of September, 2014. Otherwise, the mental health services available are, as they were last year, individual and group therapy, psychological testing, outpatient monitoring of drug therapy, psychiatric consultation, and Screening, Brief Intervention, and Referral to Treatment (SBIRT), a program where primary care physicians screen their patients for alcohol abuse.

OC Links is a phone number to call for all kinds of referrals related to mental health (855-OC-LINKS). It differs from 211 in being specifically focused on mental health.

OC CAT and PERT: This session covered two things. CAT is for Centralized Assessment Team, a team that you can call to come to wherever you are and do an assessment as to whether someone is a danger to self or others, and might need to be committed on a 5150. They can get anywhere in the county usually within 30 minutes (in an immediately life threatening situation they advise calling 911 instead). What you get are mental health professionals who work closely with the police; cops will come with them, but it will be mental health professionals who do the evaluation. PERT is related in that it also involves mental health professionals riding with police and helping them learn to better handle people in their area who have mental illness. A trained clinician rides with a patrol 1 to 5 days a week, and the city involved develops a team of police officers with additional training related to working with people who are mentally ill. We heard from police officers in Newport Beach and in Anaheim, and the mental health professionals who rode with them.

Keynote speech at lunch: This was about the treatment of PTSD in veterans. The speaker clearly knew his topic well, and had some of the most compelling information of any keynote speech I’ve heard at the several Meeting of the Minds conferences I attended. That was the good part. The bad part was that, in the part of the room where I was sitting, he was not very audible at all. It took constant concentration to hear what he was saying, and this situation got worse as people around me gave up on hearing the talk and began talking about other things. Maybe the mic needed adjusting? What I did get out of the talk was that perhaps 16% of veterans have PTSD, and as many as 30% of those wounded, and that while only a very small percentage recover on their own, around two thirds can get better with proper treatment. The treatment was multi-faceted, and I wish I could have heard all of it, but I gathered that it included yoga, meditation, cognitive behavioral therapy for insomnia, and prolonged exposure with breathing.

New Diagnostic Test and Treatments for Depression: This session discussed three things. The MDD Score is a simple blood test for biomarkers associated with depression. It includes neuroendocrine, metabolic, neurotropic, inflammatory, etc. biomarkers, for an overall score that says whether you’re likely depressed. The GeneSight Psychotropic Test looks at genes that may affect your body’s response to and metabolism of different psychotropic drugs, to help in selecting which drug to give you. And Transcranial Magnetic Stimulation is a treatment for depression, where you sit in a chair and get a magnetic pulse sent through your brain. It’s still not covered by Medicare in California (though it is in some states), but is covered by some insurance plans.

I have more notes on the talks, but that’s the gist of what they were about.

 

 

A Letter to My Children

 

You may have wondered why I am not quite like other moms. I get tired easily and haven’t always been there to play. I haven’t taken you as many places. I don’t know what else, but I apologize

When you were very young, I had a psychotic break. That is when you lose touch with reality. I was thinking strange thoughts, seeing things , hearing voices of people I know, who weren’t there.

It seemed like it came out of the blue. I was keeping to myself and not saying much. I was going to work and your father was with us at home, but no one seemed to notice. People at work asked if I was okay and why I was sad, but that was it.

It wasn’t until Aunt Kim called on the phone. You know she is a nurse practitioner. She recognized that I wasn’t making sense and told Dad I needed to see a special kind of doctor. The doctor is called a psychiatrist. He prescribes me medication.

I went to the hospital for a short time. Leila I know you were worried when I was gone. I am sorry for about that. I want you to have a better understanding so you won’t have to worry if I go to the hospital again.

I have a mental illness. You may be familiar with other words people use, like “crazy”. I am not crazy, but I need medication for my brain to work right. Now, I don’t have those strange thoughts or voices.

I thought I would answer questions, as you asked, but you didn’t ask much. Leila, one day you helped me make a poster for a NAMI (National Alliance on Mental Illness) class. You asked why “I” was making it and I told you because I had a mental illness. You just said “I didn’t know that” and went back to playing. That was years ago. I don’t know if you remember.

And, you recently made me a friendship bracelet that says DBSA (Depression Bipolar Support Alliance). I thought you might ask something when I asked for that, but you forgot what letters I asked for. I love my DSBA bracelet

Jonah, I know you are well aware of my medication. I take you to the pharmacy sometimes. I don’t want you to have to worry that I am physically ill. I recently tried to explain to you, but I fumbled my words, and you didn’t want to hear any more.

I do want to say how proud I am of both of you. Leila, you are so smart, talented and pretty. Jonah, you are so athletic, funny and hard working. I always worried that I wouldn’t give you enough. That somehow having a mentally ill parent would affect you, but you are the greatest kids.

If you have questions, please ask. I know you can imagine things worse than the truth. Jonah, remember when I wore sunglasses inside and you worried I was going blind? I want to be honest with you. I don’t want to announce it to the world, but I don’t want to keep my illness a secret from you.

Mom

The Beast

I think it is important to make a separation between ourselves and the disease. This, I think, is a state of mind more than anything else. I give mine a name — The Beast. Sometimes The Beast is ravenous and chews on my rib cage; other times it is rabid and tears out the sinews of my self control. I do my best to tame The Beast and part of that taming is taking my meds. But The Beast is only part of what makes me, me. I feel that The Beast, properly leashed, is part of the “essential and precious character” of my person, but not the only one to be acknowledged, reviled, or celebrated.

The illness and me

I try not to over-identify with my mental illness. It is part of me, but not all of me. I have heard people suggest it is something separate. What is the illness vs what is me? I understand that. There are symptoms, behaviors that aren’t typical for me.

For me, I am a person with a mental illness, like I am a person with green eyes.. I don’t know how to tease the two apart.

There was a point, after diagnosis, when I would interpret any change in mood as a symptom. I would micro-manage my illness. I spent a lot of time reading and trying to make sense of it all.

To me, part of my healing, was to learn to trust that a good day could be a good day and a bad mood could be normal. That I could relax and not worry so much.

I still spend a lot of time on mental illness websites, volunteering for mental health organizations, going to support groups but at least sometimes I feel like I can share and educate and give back.

What Makes for a Good Caregiver?

When one takes aim at a system of privilege, some jump to the conclusion that you hate the people who stand to gain from that system and have no compassion for their struggles. Caregivers can make it hard on themselves and on the patient. They give twenty four hours a day seven days a week looking after people in severe episode. They neglect their own health. They grow weary and cross from all their over-involvement.

Our DBSA chapter feels that caregivers need their own place where they can talk about their issues and we have provided one. We do not tell them what they can and can’t talk about. We do not ask them to support certain laws or advocate for changes that they do not want. We don’t have a patient monitor the group to be sure that they act according to some unbearable standard of political correctness — people need to vent. We shelter them from people who may have an ax to grind (I have heard about other groups where caregivers were roasted over hot coals by angry patients) and who don’t appreciate how hard it is. We encourage them to talk to peers who know what it is like. We always ask them how they are feeling when they come to our patient-family support groups, reminding them that they, too, are important. We feel that their mental and physical health is as important as the patient’s and we tell them so.

I’ve been hit with some innuendo from some online caregivers who imply that I don’t care about the mentally ill. What I believe they are really saying is that I don’t care about caregivers. I do. It aches when I see a caregiver overburdened and I do my best to relieve that. Many have been the times when I have had a couple in a group and told the patient that she or he needs to realize that her or his manic state of mind is creating an extremely stressful environment for her or his spouse. How does this make me a foe of caregivers? I think much of the misapprehension stems from my opposition to Murphy’s Law, which I have explained at length elsewhere. It scares caregivers to hear me talk about sane privilege– just like it scares white people when we are talking about black people — where we who live with mental illness are left out of decisions about our treatment.

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On Emilie Autumn

 

So i’ve discovered this new artist, a singer.  Her name is Emilie Autumn, and she has bipolar disorder (according to common knowledge and Gothic Charm School).  Some of her songs are obviously about mental illness, mentally ill people, and how mentally ill people are treated by society (both contemporary and past). They are also about who is perceived to be sane, and who is perceived to be not. It is for this reason that Emilie is interesting to me. Now, of all the songs by her that I know, two deal with mental illness. These songs are “Take The Pill” and “Girls! Girls! Girls!”. These are the songs that I will be discussing further in this post.  Both songs are quoted from the lyrics videos that I found on Youtube.  Although “Gothic Lolita” (which is about childhood sexual abuse) and “Fight Like A Girl” (something of a feminist anthem) are both worth your time, I will not be discussing them here. Neither of them deal with mental illness.

“Girls! Girls! Girls!” is sung (in literary terms) by an unreliable narrator. He claims to treat the mentally ill women under his care with humanity. However, he treats them like freaks. He refers to the women under his care as “entertainment”.  This song paints a picture of a man making money off of spectators looking to gawk at mentally ill people. He refers to them in the chorus as “hot, nuts, and suicidal”. This is the beginning of the narrator sexualizing the women. He says although “they look a lot like you and me, don’t let them fool you!”  This is an example of dehumanization. Apparently, in the period this song is set in, insanity was considered purely a feminine thing. The narrator speculates that the instability of female reproductive organs, and their influence by the moon, is what causes insanity.
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Review: Love and Mercy

I’m always a little on edge when I sit down to watch a movie about someone living with mental illness, particularly if it is a true story. Did the actors, writers, and director get what it is like to live with mental illness or did they make a caricature of it? Did they romanticize it? Did they put a hockey mask over the face of the sufferer and an ax in his hand? Is it another ECT scene out of One Flew Over the Cuckoo’s Nest? Or do we get the truth?

Bill Pohlad’s Love and Mercy had me worried about romanticization before I saw it. I dreaded that he would render the illness of Beach Boy Brian Wilson as cute and fuzzy, something that would make us wonder whether we were too cruel when it came to the mentally ill. It did do that, but there is a right way to go about it and a wrong way. The wrong way declares that there is no such thing as mental illness; it diminishes the impact that the illness has on those closest to the sufferer and suggests that the illness that afflicted the likes of Brian Wilson was little more than a personality quirk. Pohlad and his cast did it the right way: it acknowledges the severity of Wilson’s illness, but also turns a harsh eye towards his guardian/therapist, one Eugene Landy and his sadistic oversight of the musical great. Paul Giamatti’s performance was so to the T that when Wilson watched the movie, he experienced a severe dissociative state where he believed for several minutes that Giamatti was Landers come back to haunt him.

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Caretaker Dominance in Mental Health Discussions

A few days ago, at the Orange County Mental Health Associations “Meeting of the Minds”, I attended a workshop on caretaker-patient-provider partnerships sponsored by our local NAMI. The material was very interesting and I sympathized with the panelists. Caretakers, they pointed out, can be a helpful part of the team that brings the patient to a place of recovery. They deserve to know what they can do to help the patient and this doesn’t mean that they have to know all the patient’s “dirty little secrets” as they characterized them.

But a few things struck me: First, at least a third of the panelists promulgated a “no fault” model of mental illness. This belief has been spread without challenge or acknowledgement of the studies that link the onset of mental illness to emotional abuse and bullying by NAMI. Though one speaker did allude to this, most of them adopted the model as applying in all circumstances, including their own. I can’t say for sure if they were telling the truth — I give them the benefit of the doubt — but I also know of plenty of abusive parents who use the shibboleth to hide their own history of family violence.
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