No matter how beautiful your strategy …

Today was the day of the Meeting of the Minds, the largest mental health conference in Orange County, California. It is an annual conference sponsored by the Mental Health Association, for patients and family (“consumers”), clinicians, and first responders.

This year, we had a table. We arrived at 7am and set up. We were quickly flooded with people making the rounds (memo for next year: bring more literature). By the time of the first session, another member of our chapter had showed up. I went to the session while Joel stayed at the table, just for the first session, he said, but when I got back just before lunch, it turned out that he and the other member had been busy at the table the whole time. I took the table after lunch so they could go to their favorite sessions.

Here is what the talks were like (the ones that I attended).

First session: I went to a panel discussion on Recovery, with the panel coming from a local Wellness Center. The session unfortunately started late, as some people were held up by unexpected traffic, but we did get to hear all four speakers. The first two speakers had suffered horrific child abuse, and then grown up to struggle with mental illness. The second two had come from more supportive families, but faced other troubles and, again, mental illness. But whatever their different paths, a common theme was that recovery involved (besides meds) the support of others, and then giving back that support to others in turn. Some quotes from the last speaker, just for an example:

Instead of praying every day to God for my health, I prayed for my death. What turned it around was NAMI…. I could believe in people the way that people believed in me…. four years sober … believe in people who have mental illness.

Second session: Two psychiatrists from the John Henry Foundation spoke about “Schizophrenia: Cognitive Testing to Enhance Diagnostic and Treatment Options.” “An ab workout for your brain.” Schizophrenia involves positive systems (delusions and hallucinations), and negative symptoms (flat affect and poverty of thought), but also problems in cognition: processing of information, flexible thinking, and memory. There are medications for positive symptoms, and even some medications for negative symptoms, for for cognitive deficits, the speakers said, you need something else. The John Henry Foundation uses cognitive testing to evaluate people’s abilities in seven domains: Processing Speed, Attention, Working Memory, Verbal Learning, Visual Learning, Problem Solving, and Social Cognition. Once your weak areas are identified, you can build them through simple cognitive exercises, done daily. We got taken through some games that tested us in each area. (I appear to be way better at processing speed and working memory than at visual memory.) These exercises can be useful not just for people with schizophrenia but for anyone. Even neurotypical people can use them to build their weak areas, and people with other DSM diagnoses, such as ADD or borderline personality disorder, can use them (for example, exercises that help with attention for people with ADD, and meditation or exercises that help with emotional gating for people with borderline personality disorder).

As I didn’t go to the afternoon session, the final talk I heard was the keynote address right after lunch, “Dream with your Eyes Open,” by Eric Arauz, who went from the childhood trauma of seeing his family unravel when his father became mentally ill, to repeating his father’s mental illness, to, unlike his father, finding his way to recovery. Now he is the president of the Trauma Institute of New Jersey, and also an impressive public speaker, going by his keynote address. I got a copy of his book for our chapter, which I’ll read and hope to review later. My title comes from a line in his talk that struck me: “No matter how beautiful your strategy, you have to eventually look at the outcomes.” For Arauz, that outcome involved moving from what he calls a “Chaos Narrative: No Map or Destination” to one that rewrote his story in a more positive way.

 

What could go wrong?

FDA asked to consider adherence sensor on Abilify

http://www.modernhealthcare.com/article/20150910/NEWS/150919997

http://www.proteus.com/press-releases/u-s-fda-accepts-first-digital-medicine-new-drug-application-for-otsuka-and-proteus-digital-health/

Proteus Health, located in Redwood City CA, along with Tokyo based Otsuka Pharmaceutical Co. have a new drug application that is ready for review by regulators determined by the FDA.

The new drug is embedded with an ingestible sensor. When the medication, and sensor, reach the stomach, it sends a signal to a patch the patient wears externally. The information can be sent to physicians or caregivers with consent.

The sensor has previously been approved in a placebo taken along with a medication.

The goal is to help with medication compliance. All well and good up to this point. But, what is the first drug they choose? Abilify, an atypical anti-psychotic. It isn’t always taken for psychosis. It can be used as an add-on for depression and other ways. But, it is also used to treat psychosis.

Some, not uncommon, delusions are that:

you have sensors embedded, that your medicine has been poisoned or tampered with or that people are tracking you. This is to be taken by consent, but personally, I think they chose a bad medication.

I don’t know what is wrong with injectable abilify? That would be my choice.

 

Review: An Angel at My Table

Janet Frame endured eight years as a mental patient before she went on to become the poet laureate of New Zealand. She was misdiagnosed. While she was incarcerated she underwent electro-convulsive therapy without anesthesia and was lined up for a lobotomy until her doctor learned that she had won a prestigious literary prize and took her off the list. This movie is the story of three periods in her life. Her time in a mental hospital is the second.

I would guess that social anxiety and, perhaps, depression were the demons that afflicted Frame. She would hide in corners. She failed at her work as a teacher. When two of her sisters died, she crashed into a frozen despair.

If Angel at My Table is accurate, Frame was most certainly not schizophrenic. An early scene in the second part of the film shows her riding to the hospital in a car with two women who are severely impaired by their illnesses. She stands out as unafflicted by whatever is troubling her fellow passengers. Things were done to her while she was in the hospital just because they were the latest treatment. Her mother desperately signed the papers for the lobotomy: if Frame had been trapped in a mindless system, we would have lost a great author. Fortunately, a doctor noticed in time and helped her win her release.

Read More

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.
Read More

How to Talk Listen to a Mentally Ill Person

The mentally ill person is not a child. I have had the experience of would-be helpers who treated me so. When I attempted to describe what I needed, they argued and belittled me for needing help. I felt very alone and one result was that I stayed away from the church where this person was not only a member, but an officer of sorts. It was hard for me to treat him with charity. I turned my back when he greeted me afterwards because I could not stand his hypocrisy.

We are sensitive about being patronized because of our condition for the same reasons that African Americans are sensitive about race. No one wants to be excluded on the basis of a condition that he cannot help. No one wants his condition denied. No one wants to feel cut away from the body politic. What we want is for people to take us seriously whether or not we are in episode.

Many of the problems that people have with the mentally ill have to do with communication. Those who wish to help (and those who do not want to help) believe that the objective of interaction is to get the mentally ill person to follow a treatment plan or pull herself up by her bootstraps or realize that it is “all in your mind”. (“Have you tried not being depressed?”).

Read More

Reality Testing in Virtual Reality

Social media has become a large part of my daily activities. My friends live in my computer. I am married and have a family and do interact in the real world, too.

One thing about the Internet is things go so fast. And then you can’t take back that email or tweet. I can go off on tangents in 140 characters or less.

It is easy to feel like you are being cyberstalked. People do hack computers or follow people ‘s online activity, but paranoia can make you feel like it is happening, also.

Stress exacerbates my symptoms so it really is not a good idea for me to stay up getting tense in debates. I like to discuss ideas and facts just not argue.

I used to get messages through media. They would be hidden in written words, spoken, sometimes visual. They stopped years ago. But, I would search for clues. Everyone thought the computer was making me crazy, but the messages were everywhere.

My delusions are a lot like the Truman Show where I think everyone else is acting, filming, with product placement even. That I just can’t break through that 4th wall. Delusions are different depending on culture. I have heard voices. They weren’t mean. They would guide me and humor me. I actually missed them, I felt lost when they stopped.

The Dangers of Online Mental Health Quizzes

Alright so this is a big topic for me. A fellow author posted a link to a ridiculous quiz on Facebook that I feel the need to (and was asked to) write about.

I am going to take this quiz, step by step, and report exactly what I think about it. And after I will tell you why these quizzes aren’t just silly or stupid, but dangerous (with my anecdote evidence- reliable I know).

Alright, so when you click on the quiz, it starts off by saying, “Are you prone to dramatic and unpredictable mood-swings? What about anxiety and frustration? What’s your level of uniqueness? Find that all out right here.” Right off the bat I am annoyed. This perpetuates the stereotype that bipolar is sudden changes in mood. Going from happy to sad and back in a second. Unless you have extremely rapid-cycling bipolar, this is very unlikely. Bipolar is experienced in episodes. Generally meaning they have to last at least a few days. Although I do have little spikes of bipolar feelings, they aren’t full episodes and are mostly just annoying.

And for anxiety and frustration, yeah those can happen. I have anxiety that is sometimes correlated with my bipolar. But bipolar itself doesn’t specify that you need to have anxiety. Additionally, “frustration?” Really? Who doesn’t experience that? And lastly- “What’s your level of uniqueness?” That makes me want to hit my face on my keyboard. Being bipolar is unique in a sense, because a small amount of the population experiences it. But in this context it is taken in a positive way. In the United States we have a culture where individualism and self-expression is very important. If you’re unique, then it’s usually considered a good thing. But as far as I’m concerned, bipolar is not a good thing.

And then, of course, it adds that this should be used as a diagnostic test. And I’ll explain later why that really doesn’t matter.
Read More

Something I wrote when I got out of the hospital

I was angry that I had been hospitalized. I didn’t understand why they thought taking me away from my family was a good idea and why they couldn’t have called someone when they couldn’t handle me.

My family of origin thought that the time I spent on the computer contributed to my illness and didn’t want me to go on. I typed up this outline of how I would like them to treat me, but they dismissed it and were just upset I had been on the computer.

I am not sure if this has anything worthwhile. It was right after I was diagnosed and I was still very ill. I made some sweeping generalizations and I don’t think people need a manual to talk to someone with a diagnosis,

my first first thought was to edit, but I decided to leave it as is. If this bothers anyone I can edit or remove it. Mainly I am just surprised I was well enough to write. I was pretty symptomatic.

 

HOW I WOULD LIKE TO BE TREATED
Introduction:
I. I can control my behavior with the guidance of professionals
A. You can not cause reactions I have, like the paranoia that led to my hospitalization, but if we had asked for guidance from a professional he would have told us that relocating someone in that condition often leads to paranoia.
B. Trying to modify my behavior without asking for my input makes me feel paranoid that I am being controlled. I am willing to discuss an issue that troubles you with my psychiatrist, therapist or support group.
C. All I expect from my family is to listen and be understanding. I appreciate how helpful everyone has been.

II. I have an illness
A. I know under other circumstances it would be wonderful that I am spending more time on myself, but pointing that out while ignoring that the underlying reason is because I am unable to do many things because of my illness, is hurtful to me.
B. I can not just cheer up or snap out of it. I can take my medications and follow my Dr’s orders.
C. Once my illness is under control, it may be helpful to remind me if I seem a little more irritable or anxious, but right now that is expected with a mood disorder while they try to find the right medications and they take effect.

III. Realistic Expectations
A. I don’t know what are realistic expectations for me yet. My Drs seem to feel I will be able to return to working, driving and taking care of my daughter and son.
B. Please don’t compare me to others. There are some things that are too stressful for me.
C. I have high standards for myself, and I like my life the way it is, when Ii’m healthy

IV. The psychotic episode was a traumatic experience for me
A. I don’t want to discuss the thoughts, because I am afraid it may trigger another episode
B. That was the scariest experience i’ve ever had
C. I will work through the anxiety and paranoia with my therapist, but I do still have to recover from being psychotic and hospitalized.

V. I hope we can all learn something from this experience
A. I think there is a less traumatic way to get help. Many people wouldn’t willingly go to a locked psychiatric facility, but they would go to the Behavioral Health Unit of a hospital
B. I do worry about our family members on SSRI drugs without mood stabilizers, zoloft triggered mania in me.
C. The difference between an obsession and a passion is if it is interfering with the rest of your life. I am trying to use this time to remember what is really important.

Conclusion:
I will treat everyone as respectfully as my illness will allow, and I expect to be treated with respect in return. I understand that you may be afraid, I am too, but my therapist thinks there is a good chance  never have another psychotic episode.

HOW I WOULD COMMUNICATE WITH A PSYCHOTIC/ PARANOID PERSON
Introduction:
I. When I was in this state I regressed to a child-like state
A. Explain any changes clearly and in advance
B. Emphasize any key words and make sure the person is listening
C. If you think they are hearing voices, written communication is probably better than verbal. I tune-out some things but I pay attention if key words are emphasized either by talking louder or writing and circling key words
.
II. Include the person in any plans
A. People with schizoaffective disorder are resistant to change
B. Plans made without their input may increase paranoia
C. Offer to go to psychiatrist appointment with them, if they seem to tune out sometimes, and discuss having them sign release of medical information.

IDENTITY VS ILLNESS

Introduction: It can be difficult to distinguish between the individual’s true identity and those behaviors that are due to the illness

I. I have some traits that I consider part of my identity that are not highly valued in our society. I want to treat my illness but not give up who I am. Some of these traits for me are:
A. passive
B. stronger written than verbal communication skills
C. sensitive

II. There are traits of the illness that seriously impair my life and I need medication, coping skills, and support to deal with these. Some of these are:
A. Paranoia/Anxiety
B. Impulsiveness
C. Irrational Thinking
D. Isolating

III. There are some things I may enjoy that others may not understand, but it IS normal behavior
A. long baths
B. Solitary walks
C. Reading
D. Computer Interaction

Some things I wouldn’t want to hear
A.i want the old you back. I am still here, hiding behind this illness
B. You need to do this I don’t take orders and I prefer to take advice from professionals (others may vary on who they trust)
C. You are being too emotional. i do understand the sentiment, but I can’tc ontrol how I feel

Cults, Witches and Mental Illness

When I was 15, one of my brothers, who was 21 came home from college because he wasn’t well. He would sit and stare and do nothing for awhile. Later he would start talking but he said strange things and acted bizarre. He could be generous but was also unpredictable. I feel bad now because I was afraid of him for no real reason. He scared me because he seemed unusual.

My parents tried to figure out what had happened to him. He seemed fine when he had left home. They suggested maybe someone slipped him some drugs but settled on that he had been brainwashed by a cult at college. That his new girlfriend had brought him into the cult.

Of course, there was no cult, but the story grew. I was told not to speak to certain neighbors as they were part of this cult. My father didn’t believe in mental illness or psychiatry. He thought the hospitals were like the one in “One Flew Over the Cuckoo’s Nest” and discouraged my brother from going.

They also accused people of being witches. It was like mental illness was contagious. It was scary and confusing living in that home.

It can be difficult to be the sibling of anyone with a chronic illness. All the time and attention was on my brother and I felt ignored. My older siblings moved out and i just had my younger brother to confide in. I felt everything was strange at our house and didn’t have any friends over. My brother felt like every family has their own issues and we weren’t that unusual. I think he was able to roll with everything easier than I did.

Sonya Sones wrote a book of free verse “Stop Pretending, the day my big sister went crazy” about how she felt as a sibling, that I read as an adult and could relate to. I didn’t want to be home. I stayed out and used alcohol, other drugs and later sex to escape.

My brother didn’t get treatment except when he would get picked up for 3 day observational holds. This started in 1979 and it may have been easier to be taken in. He would be yelling or saying he was some famous person and the police would take him to a hospital. They said he had paranoid schizophrenia and put him on anti psychotics. Not Thorazine, but similar. All they did was slow him down. So, then you had a slow moving psychotic man. He knew he was not acting normal, so he would imitate people around him, which was even stranger.

The last time he was picked up, it was in a different county. They tried lithium this time. It was 6 years from when he had originally come home. Everyone told me it was like magic. He was back to his old self. I don’t know what his diagnosis was. Maybe bipolar, or schizoaffective like me. I was looking forward to seeing him. But, when I visited him, he wasn’t well. He was edgy and nervous. My mom said they had to adjust his medication, but she was waiting until Monday ( I think I came there on a Friday night). My brother took off and we didn’t know where. He had been talking about hiking at Yosemite. On Monday I got a call that he had fallen at a waterfall at Yosemite and died. No one knows if it was a suicide or accident. People do fall there.

Recently I was talking to my oldest brother and he was saying that he wished there was the information then that there is today. I thought he meant support, but he then said that we would know it was a mental illness and not a cult. I was perplexed that he had believed that. The 1980s weren’t exactly the dark ages. I have had to let go of a lot of anger towards my parents for what I now feel was dependent adult abuse by not getting him treatment, and all the time he thought they were right.