Skipping a Dose

Last Friday night, I forgot to take my meds. When I discovered this on Saturday afternoon, I didn’t feel unusual so I left the meds in their compartment to be taken in a week. Saturday, Sunday, and Monday passed without incident; so I forgot what had happened. Tuesday, however, brought light-headedness and euphoria that peaked in the evening. I battered it down with my usual night meds and eleven hours of sleep. I still felt a little high on Wednesday which made me worry that I was ramping up into something more serious. Thursday found me a little below level-headed but no longer hypomanic. Then Friday arrived. I woke to a crashing depression and general fatigue, sluggishness, and stupidity.

The temptation not to leave the house was strong, but I defied it and went for a long walk in Whiting Ranch. Golden Stars had made their first appearance and Blue Dicks their last along the trails. A single Splendid Mariposa Lily signaled that there were more things to come. I had my instant camera with me and set myself to the task of taking five good photos with the last of the film: I succeeded at four. The exertion slowed the whirling of my head, but didn’t stop it entirely. I pumped the blood through my veins by walking fast up the hills and finished my circuit in two hours; leaving me enough time to work on the computer a bit and enjoy a large snack to curb my massive appetite.

Do I insert here a warning to take your meds? Do you need one? Because I had skipped one dose, the foundation that I relied on for existing cracked and slumped. The funk that I find myself in will linger for a few days more. I’ve made plans to exercise and take pictures as I usually do on the weekends. The fissures should heal, my cocktail should plane off the undulations, and my equanimity return. This is a course that I have often run: I know what happened and what works to improve things. There’s no hammer that fixes it all. Only time and attention to my routine repairs my brain.

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My Name is Not Bipolar Disorder

worldbipolarday

The roller coaster analogy never really spoke to me. I didn’t experience a thrilling ride. It was more like a tornado or a hurricane, a central column of madly swirling air that threw everything in its path asunder only to die and leave a still, bleak landscape of broken trees and shattered homes where no one could live. “Things fall apart,” goes the Yeats poem. “The center cannot hold.” Mania causes us to lose sight of our center and depression causes us to forget that we ever had one.

I count myself fortunate that I never ended up in jail though perhaps some might have made a case for it. Drugs and alcohol, at least, never presented themselves as ways to temper my emotions — I distrusted them. I let whatever flew out of the maelstrom hit me square on and I did nothing to numb the pain except hide in my room or rage unexpectedly.

Bipolar is one of those illnesses that everyone who has watched a Lifetime Channel movie thinks that he or she knows, but they have no clue. The illness doesn’t make us evil. Most of the things that I did in my rages and panics were moved by an innocent heart. I have found the same to be true of others. But often what we do is hurtful. It is no wonder that outsiders see us as brutes. When I have acted with the most vigor and erraticness, I have done so the name of one or another great crusade, marching against problems that often only I could see. Heraclitus once said that “The waking have one and the same world, the sleeping turn aside each into a world of his own.” Bipolar creates in that waking world a sub-world that we who labor with the illness experience on our own. In it we sleep a sleep of wakefulness. Perhaps this is due to the restlessness of mania that keeps us up night after night, day after day.

Eventually things fall apart and we find our minds in bizarre places.

My worst psychotic episode happened when I was working over Christmas break in college. The world became a maze of passageways like I see in my dreams, the doors to the rooms hazy and difficult to find. I believed that I was God and that I had messed up the world. Once that a coworker asked me what was wrong. I did my best to deny that the veils between us did not exist. It was a tricky maneuver but I pulled it off. Every night I returned to my room and found darkness. When the other students returned, I felt less lonely, but I felt I wasn’t one of them. I hid in my room, held my tongue and kept my condition to myself. They knew nothing of my obsession or the distortions that blurred my cognition. Sometimes they would find me staring into space and wonder if I was on drugs. I was stone cold sober. An ill gift of prophecy settled over me. I believed that I could predict what people were going to say. I became sensitive to the occasions when people would utter words that I had encountered in my reading with no connection to the class or the context. My skin jumped at their mention and my shivers from remembering the incidents of my day kept me up. The episode slowly lifted over the semester, though I did have to drop a class.

Sixteen years passed before I sought the aid of a psychiatrist. Eleven more needed to turn over before I started telling the truth about my experiences. Oh the rages, the insomnias, the dark nights of the soul, and the mind-crushing paranoias that troubled me even though I took antidepressants and thought myself cured! The word “bipolar” was, at last, used. During the eleven years of denial, I refused to believe that it applied to me though I numbered it in others. One day in the hospital, it caught up with me, though. The new attachment to my identity electrified me. I read all I could, kept finding myself between the pages, and in the end surrendered to my diagnosis. Then I took my pills as prescribed, dieted, exercised, and broke down the walls that kept the world outside of my dream.

Though my doctors named my condition, my condition was not me. I had always had doubts about this wreck of a brain that always seemed to say and do things against my better judgment. Outsiders sometimes tell me that mood stabilizers erase the personality. They have no clue. When I got on lithium and it started working, I found myself able to be the me that I knew I always was, free of the control of the randomness-loving demon who operated my body like a slot machine whose prizes were shame and sorrow. Over the years, I have added and subtracted more medications to my cocktail until I had a firm foundation upon which I could finally build a brick house. When the madman tried to seize control of my inner weather, I had a series of steps that I could take to seal myself inside my house and wait out the storm. This security enabled me at last to separate myself from my illness. I knew, at last, who I was. Life was no longer a bad dream.

Another Hockey Mask: Andreas Lubitz

*TRIGGER WARNING*

square855I must tell the truth here: I do not understand what Andreas Lubitz did. In my suicidal fugues, I thought of many ways that I might kill myself that involved others such as throwing myself in front of a truck or crashing my car into a tree or driving it off a cliff, but the idea of taking others with me — that wasn’t the self-annihilation that I planned. When I came close,I found a secluded place where someone would eventually find me. That was the maximum involvement of another that I planned. Though I thought capital punishment might work for me — and send a message to those who loved me — I did not want to assassinate others.

>Rumor has it that Lubitz was going through some catastrophic issues with his girlfriend. He knew that he was ill and he was seeking treatment for it. The day of the crash, his psychiatrist issued a sick leave note. Andreas did not use it, however, and his doctor could not call the airline to tell them that he was at risk. But Lubitz did not stop at ending his own life:

Andreas Lubitz was breathing, steady and calm, in the final moments of Germanwings Flight 9525. It was the only sound from within the cockpit that the voice recorder detected as Mr. Lubitz, the co-pilot, sent the plane into its descent.

The sounds coming from outside the cockpit door on Tuesday were something else altogether: knocking and pleading from the commanding pilot that he be let in, then violent pounding on the door and finally passengers’ screams moments before the plane, carrying 150 people, slammed into a mountainside in the French Alps.

In a different article, The New York Times reported that Lubitz concealed his illness from those closest to him:

Peter Rücker, a member of the flight club where Mr. Lubitz learned to fly, told Reuters television on Thursday that he knew the young man as a cheerful, careful pilot, and that he could not imagine him committing such an act.

Online, Mr. Lubitz appeared to be a keen runner, including at Lufthansa’s Frankfurt sports club, and had completed several half-marathons and other medium-distance races, including an annual New Year’s run in Montabaur in 2014.

A Facebook page with a few tidbits of his possible “likes” was visible Wednesday but had been removed by late morning on Thursday. It showed a photograph of a young man near the Golden Gate Bridge in San Francisco, though there were no clues to when the image was taken or any other details….

Data from the plane’s transponder also suggested that the person at the controls had manually reset the autopilot to take the plane from 38,000 feet to 96 feet, the lowest possible setting, according to Flightradar24, a flight tracking service. The aircraft struck a mountainside at 6,000 feet.

Before Mr. Lubitz, 27, a German citizen, set the plane on its 10-minute descent about half an hour into the flight from Barcelona, Spain, to Düsseldorf, Germany, the cockpit voice recorder picked up only the usual pilot banter, “courteous” and “cheerful” exchanges, the prosecutor said.

Then the commanding pilot asked Mr. Lubitz to take over. A seat can be heard being pulled back and a door closing as the captain exits the cockpit.

Lufthansa, the parent company of Germanwings, takes the position that nothing could be done, that even the best system in the world cannot protect the public 100% from such disasters. And they are confident that they have a good one.

I am not a big fan of willy nilly violations of confidentiality. It seems to me, however, that there should have been a way for the doctor to tell the airline that Lubitz was a danger to self and others and see that he was grounded. There should be ways for the pilot to open the door from the outside of the cockpit or to place a toilet inside the cockpit so he doesn’t have to enter the passenger section of the plane. So many things can have been done differently, but I am afraid that this is not where the media, public opinion, and politics will take us. The Times’ restraint will almost certainly be accompanied by more shrill attacks on the mentally ill among us. Lubitz, I dread will become another hockey mask, another poster child who will be held up as a clarion call for denying the mentally ill their confidentiality. Laws stand before Congress that call for allowing “caregivers” to be informed of what goes on between psychiatrists and the most severe mentally ill. Will Andreas Lubitz’s crash take us another step? Who else will psychiatrists be forced to inform? How will confidentiality be broken after this incident? Who else will be able to enter the circle that HIPAA laws now defend? I shudder at the possibilities.

We must look, I think, at another major factor in this crash: stigma. Some out there think that stigma like racism no longer exists or impacts on lives. Believe me, it is alive and well. I know people who have lost jobs because their employers found out about their illness. We are told that we are ax murderers even though we have no history of violence or making threats. Friends decide that they want nothing more to do with us. Spouses panic and file papers for divorce. Now they will say that we harbor these impulses in secret, that we are all ticking time bombs.

Andreas Lubitz kept his illness a secret, I suspect, because of what would have happened to him. He would have lost a lucrative job. He might have found himself unemployed for months or even years. Friends would shun him. He would find himself very alone. In the final analysis, because he could not reveal his ache — because he could not talk about it without bringing an end to the life he had worked so hard to create for himself — the pressure built on him. When he found himself alone at the controls of the jet, he forgot the passengers. Only his pain was real to him and he ended it in the most powerful way he could.

Tough Love Isn’t For Mood Disorders

Every now and then, someone comes into one of the support groups I attend or encounters me online and talks about how their family has decided to apply tough love. They are not alcoholics nor do they use illicit drugs. The parents or spouse are reacting to symptoms — usually the lack of motivation to exercise, take care of themselves, etc. The helplessness of the patient does not matter to them. They may not understand that it takes time to recover from a mood disorder or they may deny its existence. If you’re now taking medication, you should be better now, right? Or maybe they think it is time that you “got out into the real world”, suffered what “everyone” else suffers.

So they apply a philosophy that they heard about — maybe from friends, maybe from a therapist, maybe from Bill Milliken’s 1968 book or one of the many self-help guides that have replicated the idea which is called Tough Love. At its best, it is merely setting good boundaries — “sorry, but if you are going to use the money I give you for food to buy street drugs, I am not going to subsidize you”. But in American culture, it too often means employing cruelty to be “kind” whenever the patient doesn’t act in a way that the caregiver doesn’t like. And many caregivers make the mistake of thinking that the symptoms of the disease are something that the patient can control. You are depressed, they might reason, because you don’t exercise You are sleeping all day because you are a lazy good for nothing.

When they apply tough love in this situation, they are abdicating their responsibilities as a parent or a spouse. First of these is to understand the illness. Psychiatrists, for example, see the lack of motivation to exercise less as a cause than as a symptom. Studies show that exercise doesn’t do a lot to pull people out of depressions. A systematic review of the literature on exercise’s effect on depression found:

Exercise is moderately more effective than no therapy for reducing symptoms of depression.
Exercise is no more effective than antidepressants for reducing symptoms of depression, although this conclusion is based on a small number of studies.
Exercise is no more effective than psychological therapies for reducing symptoms of depression, although this conclusion is based on small number of studies.
The reviewers also note that when only high-quality studies were included, the difference between exercise and no therapy is less conclusive.
Attendance rates for exercise treatments ranged from 50% to 100%.
The evidence about whether exercise for depression improves quality of life is inconclusive.

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The Medical Marijuana for Bipolar Lie

UPDATED

Everyone seems to have a friend who has been helped by medical marijuana. When my wife had chemotherapy, we had it as a backup in case the anti-nausea drugs did not work for her. Glaucoma is a disease with medical research backing the effectiveness of medical marijuana. But the medical marijuana industry goes beyond what is proven by science. It welcomes those who use it for many other diagnoses despite the absence of peer review studies. In other words, if you can get a doctor or a nurse practitioner to write you a script, you can get high legally for any disease you can name. And the worst of the lies medical marijuana prescribers and retailers let fly is the lie that marijuana helps the symptoms of bipolar disorder.

Here is my full disclosure: First, I do not oppose legalization of marijuana provided it is regulated at least as well as alcohol. There need to be laws governing its sale to minors, bans against driving under the influence, etc. But other than that, I have no problem with seeing it available as a leisure drug. There’s considerable evidence that the liquor industry does not want this, but alcohol is worse than cannabis in some regards. Second, I have smoked marijuana. Here is where my strong feelings about the subject come from. When I was in college, I was talked into toking by my peers. They did not force it down my throat, they did not blow smoke into my lungs, they did not deceive me in the sense that they told me things that they knew were not true. I started using the drug by my own choice.

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Sandy Dumont R.I.P.

We lost one of our first and oldest members, Sandy Dumont, from an infection complicated by gastrointestinal issues and Parkinson’s. She came to us at our second meeting and stayed with us until just a few weeks before we lost her. Lynn and I visited her in the hospital and talked for a couple of hours about the years we had known each other and her plans for recovery. Her daughter Stephanie joined us on that Sunday afternoon only a few weeks ago. She kept us informed about Sandy’s progress as she entered a convalescence home and about the first onset of the infection. Stephanie is, as you might imagine, taking this very hard. Before I heard the news, I felt tired from a morning planting and dibbling at the Irvine Ranch Conservancy Native Seed Farm. The news put more weight on my shoulders and limbs as I made calls and posted notices in various places on the web.

Sandy saw our Monday night support group as a second family. The younger people in the group — and I include myself — listened to her stories about her shock treatments, her struggles with Parkinson’s, and her sojourns in various mental hospitals in the days before lithium let her go home. She had tried living without the meds and she was grateful, at last, for having them. Her admiration for her psychiatrist was immense. It was through him that she found us. We, in turn, took hope from her story and became convinced through her that we could have a life with this illness riding in our skulls.

I don’t know who will fill the chair to my right at Monday meetings. I leaned on Sandy not only to give great and timely feedback to those who needed it — she was no self-appointed pundit or expert on bipolar disorder but spoke only from her own experiences and insights — but to be my backup as Vice President of the chapter. She was a good judge of character who I relied on when deciding who to appoint to the Board, who to trust as a facilitator. There’s a hole that needs filling, one that isn’t just a position on a board of directors but also for a friend and confidant. I am not sure where to go now. She is already missed.

How About Using Another Disease Sometimes?

Every now and then, a well-meaning giver of feedback in a support group tells a distressed and uncertain newcomer that her illness is “just like diabetes”. You don’t think twice if you have to take Metformin or insulin to treat your condition goes the argument. So why balk at psych meds?

Just today I saw a writer in The Guardian put a slightly different twist on the analogy:

We wouldn’t accept misinformation about diabetes being widely circulated without correction so why should we allow it for bipolar and other mental health conditions?

I live with both bipolar disorder and Type 2 diabetes. Let me start out by saying that the treatment for the two diseases is alike in some ways and very different in others. It is true that I have to take medication for both. Exercise helps both conditions. But as a diabetic, I have to keep checking my blood sugar, test my toes for loss of sensation, and examine my feet for lesions that could lead to amputation. An optometrist checks my eyes every year for retinopathy. Eating right is critical. Diabetes is a chemical condition, but the story about bipolar disorder is more complicated than that despite what the pharmacy reps tell our doctors. So the analogy goes only so far.

If we want to concentrate on the medication angle and false information angle only, why use diabetes all the time? I have other comorbitities that require regular medications such as my heart condition which I treat with anti-cholesterol drugs and blood pressure pills. Thyroid conditions have more in common with bipolar disorder so why don’t we use these parallels? Vary the example. And be very aware of how diabetes and bipolar disorder aren’t alike and how our oversimplification of the root causes of bipolar disorder is wrong.

Arguing with the God Within

Near the end of Ingmar Bergman’s classic Winter Light, the troubled minister who is the film’s main character, can’t decide whether to hold the 3 o’clock service or not. His day has been especially depressing because he gave counseling to a parishioner who subsequently committed suicide that very afternoon, he fought with his mistress, and he has the flu. The church sexton, a disabled survivor of a railroad accident, talks to him about the part of the Gospels which he has been reading, the Passion.

Jesus, the sexton reasons, didn’t suffer all that much on the cross. Why, the janitor goes on, he personally suffered more pain in his life than the four hours that afflicted Jesus and his pain was probably much worse. No, the crucifixion is not the most important segment of the Passion. Think of the Garden of Gethsemane, he says. The Last Supper is done. The disciples who have accompanied him have no clue about what is about to happen, so they go to sleep. Jesus is all alone, so he kneels down to pray. And what does God the Father say to him? Nothing. God is silent. And that, the sexton reasons, is the most terrible ordeal that Jesus endures.

Agnostic that I am, I still value the Gospels as a guide for understanding the suffering that is happening in my life. But what I would give for a silent God at times! In the void, my depressions fill the emptiness with the voice that is the worst of the Old Testament combined with Catholic guilt. I call this my inner god — a false god to be certain — because its primary purpose is to torment me. My illness exists, according to this voice, for the purpose of punishing me. But therapist after therapist has asked me What have I done that is so terrible that I deserve this constant hammering at my self-esteem? I can throw out a number of things, but they are all trivial compared to the actions of some of my peers who feel no shame for what they wreak against others. Surely there should come a place where my penance is over? But no matter what amends I make, the god inside me continues to berate me and declare me worthless.

One reason why I value my manias is that they shut down this voice entirely. Only my own ideations occupy me — obsessively. My thoughts race from project to project, propounding desperate philosophies that enthrall me more than methamphetamine. The evil god, the blasphemer against my happiness is put to death and does not rise again until I crash. Then for more than forty days at a stretch, the god assaults me with shame.

For the depressed and the anxious, the silence of God is a scream.

Loser Who Thinks Too Much

square844Both those terms have been used to describe me. An insult just doesn’t stab, it leaves a wound — not a scar, but a bleeding dripping lesion that comes to you in your worst depressions and sometimes — like now — when you are feeling just fine. I am a loser because I have not worked since I was 33 and do not have kids. I did not make a million in Silicon Valley and no one buys my photography or my writing (which I haven’t tried to sell in a long time.) Never mind that I have been married 27 years to the same woman, never hit or threatened to hit her or called her a vile name. I am a loser, a pariah.

The isolation of bipolar disorder is hell, but the isolation of my personality is worse. When I take tests such as the Myer’s Brigg, I keep scoring in the rarest categories. Less than 1% of people out there share my characteristics. We wander around, seldom meeting each other. The way we see the world, the things we strive for just aren’t appreciated or discerned by the rest of you out there. You come onto my blog, read my accounts of my illness or other aspects of my life and you don’t get me. I am a cipher, a shadow on the wall swept by the wind, a curiosity that cannot be. I, like others of my kind, feel alone. No wonder so many of us end up in monasteries or convents.

An article from a 2010 issue of The Guardian cites a pundit who believes that the InterNet has destroyed our ability to think deeply. All the shallowness of our political talk, our inability to concentrate works of art that encourage us to probe our minds, the simplistic and self-serving grasp of religion — those things I believe have always been there. InterNet debates are only emblems of a longtime tendency for their participants to refuse to engage with people who disagree with them, to damn new ideas with oversimplifications and patronization, to mock differences. People have always told me that I think too much, even educated people. They twisted the gifts of my mind into a curse. So I hide from them. I do not speak of my cogitations in any place other than here. Yes, I pretend to be something that I am not, but what am I supposed to do when I am so alone and the mass of human beings cannot and will not trouble to understand me?

Bipolar disorder with its wild antics and chilling depressions hogtied me for the longest time. I’ve come out as a new person, but the rest of you remain the same. Freak is how you thought of me when the disease ran my thoughts and freak is how you think of me now that I am in my right mind. Was it worth it?