Reminded of Algernon

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Not sure what triggers so proceed with caution

I have 3 brothers and 2 sisters. I used to have 4 brothers. Pat passed away over 30 years ago. For a long time I didn’t speak about him. Everything upset me too much. I speak some now. But, it is I sad story and I don’t want to discourage people. Different times, different people.

Pat had a breakdown at 20 when he was at college. He came home a different person, first he would just stare. Then he was obviously mentally ill. He claimed he had been brainwashed by a cult,.he was also the soccer player Pele’ and other people. He was unpredictable and scared me. He would try to act ” normal” mimicking others, which was even worse. My father felt Pat could just stop it if he wanted and would yell and even hit him.

my father didn’t believe in mental health treatment and the only help my brother got was when he was picked up on 72 hour holds. They would give him typical antipsychotics, this was the late 70s, and send him home. He would be psychotic and sedated which just made his differences more apparent.

then, in 1985 he was picked up in a different county. They tried a different medication. lithium. Everyone told me he was back like his old self again. It was as close to a miracle as I could imagine. But, when I went to visit he wasn’t well. He was looking at me suspiciously. He was talking about the bible excessively and was hard to understand. My mother said they were having trouble finding the right dosage.of medication.

he took off that night. I never saw him again. He went to Yosemite. He fell at a large waterfall and died. Suicide or risky behavior? I am not sure.

I have all kinds of mixed up feelings. Mainly guilt. That I didn’t try to understand more and be closer and not so afraid, that I didn’t do more to get him some kind of help, that I am fine and he wasn’t.

and just sad that he was fine for a little while and then started to go back into the psychosis he had been trapped in for years.

(About how the title: my children were talking about ” Flowers for Algernon”. I know the story is about intellectual disability, but the idea of improving and then going back to the old state hit me as similar and sparked the memories)

 

A Letter to My Illness

You moved in when I was very young, shoved me into your corner, made me cry and when I cried you caused the kids to laugh at me, taunt me saying “Don’t cry Joel.” Sister Annette told me to buck up, to learn to be a man and hold the tears back. Damn you and damn her. I couldn’t say it at the time. Two years of living under the threat of her ruler, but the taunts were worse, hurt worse. The more they called me names, you and my parents reasoned, the stronger I would become but this practice was flawed. I played alone or with other losers. My mother criticized my choice of friends, calling them slow, hinting that they were retarded. Even among them I lived in a shell and the kids continued to wear at my head, trying to produce the streams of salt water they loved so much to see. I don’t know what brought you to make a home in my head. I don’t know why you made me sensitive to the twist in their voices. Was it the arrival of my two cousins who stayed for a year? If it was, you stayed beyond a year, brought me suffering. I looked at Jesus and wondered what was worse: crucifixion or this hell I was going through? If I was on the cross with Him, it was an absurdity.

Ends of a Mood Swing

My mania feels like a fishing line pulled taut to the breaking point.

My depression feels like I am that same fishing line let to fall in a curled mess and tossed to the bottom of the sea.

My mania feels like omnipotence — the power of God — channeled through my neck, my spine, my limbs, and my eyes.

My depression feels like my failure to be of any effect, like I have botched things up, crippled animals, alienated friends, brought evil into the world.

My mania feels like I can do great things, that I have a destiny that will change the world — bring peace, soften stone hearts, make people live in harmony.

My depression feels like a hole that sucks in everything good, that is no place to hide from despair.

My mania gives me energy to glide up the last spine leading to Everest’s summit and dive without a bathyscaphe to the bottom of the Challenger Deep.

My depression makes me stay in my house dreaming dark dreams.

My mania makes me love all humankind — especially women — and spark with anger if the purity of that love is questioned.

My depression makes me the lover of my pillow, my sheets, and my blanket, a friend of the curtained darkness, the noises of the day, and the deep emptiness of the night.

How My Condition is Changing Over Time

I haven’t had the problem with side effects that others have had. Except for the weight. The fucking weight. I went to my endocrinologist the other day and learned that my A1C levels had gone down five points. Of course, I over-ate to celebrate, but the maddening thing is that my weight isn’t changing: I continue to hover between 250 and 260 pounds! We have no explanation for this, my doctor and I, but it is noted.

Damn the weight! The blame falls almost entirely on my Risperidone, an antypical anti-psychotic. My mood stabilizers are kind on this point, but my Risperdal has transformed me from a reed shaking in the wind to a baobab — a huge club of a tree that eats up city blocks in Africa. The other night I took a nearly nude selfie. My stomach stood out like a bump on an oak tree. I looked like I was heavily pregnant, ready to drop a cat or a foal. The hair on my belly spread out from my navel like grass on a tiny planet. But I have been rewarded with calmer moods, gentleness, and peace of mind. I’ll find a way to reduce the weight.

Proposition 61

For the November 2016 election, we get to vote on 17 propositions. It can be hard to make up your mind about so many. One proposition, for better or worse, may affect many people who live with mental illness, through it’s effect on pharmaceutical prices. I’m not going to tell you how to vote; I see good people and organizations coming down on both sides on this one. But I am going to talk a bit about how to figure out how to vote. What would this proposition do, what are the pro and con arguments, and what sources of information can help you?

The first place that we can look to learn about the propositions, of course, is the California ballot pamphlet. Conveniently, for those of us who sometimes misplace things, you can also find the ballot pamphlet online at the California Secretary of State web site. Here is a link to the ballot pamphlet section on Proposition 61.

In the ballot pamphlet, you can find the full text of the proposition, a legislative analyst’s summary (which gives you an idea of the effect of the proposition that those of us who aren’t lawyers would have trouble getting from the text of the law), and ballot arguments that are submitted by proponents and critics of the proposed law. But it’s rather long, and can take a while to read all this information for 17 different propositions. If you don’t want to read through the whole ballot pamphlet (or even the whole pamphlet leaving out the text of the proposed laws), there are simpler summaries. One is actually in the pamphlet (see the first page of that link I gave, and just jump to the longer sections after reading that. Another is supplied by the League of Women Voters. Here is their information on Proposition 61, including official links to support and opposition.

Another way to evaluate propositions is to look at who endorses or opposes them. For this, you can find a handy chart by California Choices. California Choices does a round up of ballot endorsements by a wide range of organizations and papers each election. (California Choices’ page rounding up information about Proposition 61 is here.) Or, if you’re interested in the money trail, you can check out what Ballotpedia has to say about Proposition 61.

OK, I’ve talked a lot about sources, but I haven’t told you what’s in the proposition, or what the pro and con arguments actually are. Here’s a brief description from the ballot pamphlet:

Prohibits state from buying any prescription drug from a drug manufacturer at price over lowest price paid for the drug by United States Department of Veterans Affairs. Exempts managed care programs funded through Medi–Cal. Fiscal Impact: Potential for state savings of an unknown amount depending on (1) how the measure’s implementation challenges are addressed and (2) the responses of drug manufacturers regarding the provision and pricing of their drugs.

The crux of the controversy between pro and con (and there appear to be organizations and people I respect on both sides) comes down to “(2) the responses of drug manufacturers”. Proposition 61 is aimed to ensure that drug manufacturers lower their prices, for certain purchases the state makes, to those supplied to the US Department of Veterans Affairs. The connection to mental illness and mental illness advocacy, here, is the fact that some people on Medi-Cal require psychiatric medications, and Medi-Cal programs that don’t involve managed care are covered by this proposition. And lower prices for the state could also mean lower co-pays for patients. Proponents argue that the proposition will lead to lower prices and an end to price gouging like the EpiPen price hike. But, since the proposition dictates what the state can do, not how drug companies will respond, lower prices aren’t the only possible consequence. Opponents of the measure argue that it could, instead, lead to higher prices for veterans (if drug companies decide to raise prices for the US Department of Veterans Affairs rather than lower prices for the state of California), or, alternatively, that pharmaceutical companies could simply refuse to sell some medications at the lower prices, thus forcing the state to restrict what drugs it covers. The end result, say opponents, could be to increase drug prices and reduce patient access to needed medicines.

Whose argument do you believe? You can follow the links I’ve supplied (or add your own sources), weigh the arguments, see who’s supporting each side, and make up your own mind.

 

Turning to others

It’s hard for me to get the words out when I’m having a rough time. I can be pretty vague. I don’t know who to confide in about my symptoms and feelings. I don’t want to be a bother. Some people will offer platitudes or react more than is needed. I have to trust someone to keep things confidential and hope they will not dismiss me.

I was traveling recently and started having a few breakthrough psychotic symptoms. I didn’t even want to talk to my husband about them. It just takes a lot of effort and it never seemed like a good time.

I contacted a talk line and they told me to think “positive thoughts” and that negative things happen when you think negatively. I am not sure what I was looking for; maybe some reassurance I could see how things go over the next couple of days. Whatever it was, positive thinking wasn’t helpful for me. I think it was just some of the stress of traveling because the symptoms stopped on their own.

So, if I do turn to you, it means I trust you. Not that I expect you to have all the answers. But I do need you to listen. Sometimes talking doesn’t help. Other times, I just need someone to reassure me I will get through it.

The Day of My Diagnosis

This is the text of a speech I delivered on September 22, 2016

Twenty two years ago, when I was almost thirty six, I woke up one morning and said “Lynn, I’m sick.”. I had been in bed for weeks. I’d lost my appetite. We made an appointment with the psychiatric department at Kaiser Redwood City and by the end of the following week I was on Prozac.

Prozac was amazing stuff: I was cured the next day. My psychiatrist was surprised but because i had never told him about my other symptoms — the irritability, the paranoia, the rapid speech, that time in college when i had gone up to San Francisco with my girlfriend and come back with my girlfriend and they were two different people — he let things be. In time, our insurance changed, so I came under the care of a nice gentleman in Menlo Park who also had no clue about my other symptoms so he made no changes. Then we moved down here and I found a new psychiatrist who also made no changes because I never told her about my other symptoms either.

Then one day the Prozac stopped working, so she changed me over to Effexor. I found myself in a burning darkness. Two things happened. First, an editor was taking forever to get back to me on a story. Second, I overheard Lynn saying something about me to her sister. My irritability merged with my despair. I went for a walk in Whiting Ranch, called a friend — who found my anxiety funny for some reason. So I texted my last will and testament to Lynn, making special note to leave some possessions of my father to my nephew and asking her to be sure to be sure to get my poetry published after my death. Then I sat down on a sycamore log, studied my veins, and prepared to bread my glasses.

My cell phone rang. It was my psychiatrist. “Are you all right?”.

“No,” I whimpered. She told me to go down to South Coast Medical Center. Lynn picked me up and drove me to Laguna Beach

After spending several hours in the emergency room getting my chest x-rayed because I was wheezing, they took me down to the behavioral unit where I left Lynn at the door. They took away my shoelaces and my glasses, then showed me my room.

I came out after an hour. “I am diabetic,” I yelled. “I need my blood sugar medicine!” I can only imagine what was going through their minds — “this guy was brought here because he was preparing to commit suicide and now he wants the medicine her takes to keep himself alive” — but I am sure they took careful notes.

The next day when i went to group i was the happiest person there. Everyone was miserable except for me who was laughing at the fact that he had attempted suicide and lived to tell about it.

After group, I waited around until I was called into a consulting room. A psychiatrist joined me there. He took a few minutes to read over the notes the ER doctor and the nurses had made. Then he looked at me and asked in a very gentle voice “Had anyone ever told you that you were bipolar?”

And that is when my recovery began.

Conference of DBSA California, 2016

I have just returned from the conference of the Depression and Bipolar Support Alliance of California. Between keynote addresses and workshops, here are the things I attended (for some, I have notes).

Keynote speaker for Friday morning, stand up comic David Granirer, on “I’m OK But YOU Need Professional Help: Creating Recovery – One Laugh At A Time!” For obvious reasons, I didn’t take notes for this one.

Adult Suicide Prevention Training (presenter Liam Mina, MSW): Liam Mina is a social worker with Didi Hirsch, a Southern California organization founded in 1942, which works on suicide prevention. After the death of Marilyn Monroe, in which they were involved in a “psychological autopsy,” they started getting phone calls, not about Monroe, but from people who themselves wanted help. So they established the first suicide hotline in the US. Now they have 24/7 service in English and Spanish, along with texting and chat for the deaf, and Korean and Vietnamese from 4:30 pm to midnight Pacific time. 90% of suicide is associated with mental illness, but 50% are not in treatment. Responding to warning signs of suicide: Build rapport, assess risk (ask directly, and for people who do say that they are thinking about suicide assess degree of risk by asking about plans and with scaling questions), establish safety (make a plan, connect to resources, ask to repeat back plan).

Ask the Pros: Kent Layton and Himasiri Da Silva. This always popular session allows people to pose questions to a clinical psychologist (Layton) and a psychiatrist (Da Silva). Topics included what to do in a crisis, what to do if you’re allergic to all the meds, what are the effects of different strains of marijuana, the difference between ADHD or ADD and bipolar disorder, whether ketamine is recommended for treatment-resistant depression (and the same question for Lexapro), what about food supplements, and the DSM-V.  A few notes from the answers: Medical marijuana isn’t recommended for bipolar disorder. Useful supplements include fish oil (omega-3) and folic acid (not in place of medication, but alongside it). Da Silva feels that the DSM needs to build in more bioevidence; bipolar disorder had a large genetic component. As time goes on the DSM will become more biologically and evidence based. If you’re in crisis, keep showing up and suiting up, get up even if you can only manage a walk around the block, and don’t give up even if getting your meds right takes trial and error.

Bipolar Disorder: A Family Affair (presenter Angela Paccini): I didn’t take many notes on this one. It focused a lot on family stories, in the interest of showing what knowing roles and triggers and providing support looks like.

Bipolar Disorder – The Future (presented Da Silva): There have been four eras in psychiatry: The Asylum Era, the Psychodynamic Era, the Psychopharmacology Era, and what we are now entering, the Molecular Neurobiology Era. We still draw on what was learned in earlier eras (e.g. psychotherapy, especially CBT and DBT, helps, as do medications developed in the psychopharmacology era), but a new improvement in treatment is our understanding of pharmacokinetics and pharmacodynamics. Medications don’t provide chemicals in the form effective in the brain; first they need to be processed by the liver. Here, pharmacokinetic genes, such as CYP450, are important. The CYP450 system involves 57 enzymes responsible for drug metabolism, primarily in the liver. People can be normal, fast, or slow metabolizers, and a genetic test can show which you are. For example, only 55% of people metabolize Seroquel normally, while others metabolize faster than normal (and therefore see less effect) or slower than normal (and therefore see more side effects). Medication interactions are important (for instance, the estrogen in birth control pills can speed up the breakdown process for Lamictal). So is folate, and some people, with a variant form of the MTHFR gene, lack the ability to metabolize folate and may need, instead, to take methylfolate. Genesight offers genetic testing. Da Silva also talked about evidence based practices governing which medications should be given first (ones for which there are large scale studies supporting efficacy and few side effects).

Saturday morning keynote speaker: Antoinette Brunasso spoke on Coping with Depression and Bipolar Disorder: The Impact on Self and Family. This was a very good talk, at a level easy for a lay person to understand, largely around developing what Brunasso calls a “solid, flexible sense of self,” one that allows you to tolerate anxiety, and avoid reacting to conflict by reflexively caving, avoiding, or locking in your position, but rather work through the conflict toward a solution that works for both partners. How “fusion” can lead a spouse to get stuck in the same place as the bipolar or depressed spouse, and how developing a healthier sense of self can help you work through marital conflicts better even when one of you is also dealing with mental illness.

Reflective Functioning and Mentalization in Relation to Bipolar Disorder (presenter Nazare Magaz): Mentalizing is the capacity to imagine inner states in self and others. It can be affected by your early attachment process, which can lead either to secure attachment or to less secure forms (anxious avoidant, anxious preoccupied, disorganized); if you are a therapist, both knowing your own attachment style and recognizing that of your patient can be useful (don’t crowd someone whose attachment style is anxious avoidant). In bipolar disorder, ability to mentalize drops when you go into episode. Signs of mentalizing: You can imagine multiple states of mind that could lead another person to behave as he or she does. If you can only think of one possibility, you may be falling out of the open, curious state you need to mentalize, and instead in a place of psychic equivalence, where you have a thought about what another person is thinking and then assume it’s true. What do you do when someone else is in a place of psychic equivalence? You need to empathize with that person first. How do you develop mentalizing ability? By being around and learning from people who have it.

Lunchtime keynote speaker: David Miklowitz, on Child and Adolescent Mood Disorders. I didn’t take notes on this one, because having notepaper around a lunch table is awkward, but I did live tweet some of it after I had eaten.

Happiness with music (presenter Mike Sullivan): We played ukeleles. I didn’t take notes.

Trauma Effects – Depression and Bipolar (presenter Christine Monroe): Trauma is always part of psychotherapy. It’s part of life. This talk covered: What is trauma? How does PTSD compare to bipolar disorder (e.g. flashbacks to traumatic event compared to depressive ruminating)? What events can lead to PTSD? What puts people at risk? References: Ross Rosenberg on trauma levels. Dan Siegel on parenting. Evidence based treatments: Trauma focused CBT, exposure therapy (start mild), relational therapy, and, a particularly good therapy for PTSD, EMDR.

And that was my last workshop. I condensed my notes a lot for this post, so I may, if I find time, have a longer post on one or another of the individual sessions.

 

 

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.