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Notes on the California State DBSA Conference
Posted on October 25, 2010 in DBSA Support Groups and Conferences
Conferences bring together a variety of speakers and audiences. Numbers at this year’s California State Conference in Ontario, California, had suffered a bit from the economy, but audience involvement with the speakers was more intense than in past years or maybe I felt it more because I had recruited some of the speakers.
The strongest and most original clarion call was issued by the therapist Dr. Mary Madrigal. I recruited her to speak to remind us of those in their last days and their possibilities for comfort or abandonment. Death comes to us all. The question is what will be the quality of the time on the death bed? Will we be surrounded by caring staff or will we be left alone in a room because that same staff shrinks from us because we suffer from mental illness?
The hockey mask of Jason affects the opinions of medical professionals who supposedly have been educated in the realities of our illnesses. “Caregivers often express fear of those with mental disorders,” says Dr. Madrigal, “while dealing routinely with victims of dementia.” Statistics show that most of us are harmless, yet we may find ourselves shoved to the further reaches of the hospice where our cries of fear cannot be heard.
Dr. Madrigal told us that we will fight “not only the nearness of death, but also the judgments made against the mentally ill.” This is no way to pass on. Doctors, nurses, chaplains, and other hospice workers need to be educated on our needs. Peer specialists could make a specialty of caring for the dying and their families. The time is now to reach out for better final care for people like us,
She left us with a question to ask about our peers living their last days: “How are we going to honor their lives?”
During Friday night’s entertainment, we witnessed former DBSA director’s Peter Ashenden’s tirade against Dr. David Miklowitz due to the fact that the latter had referred to “bipolar persons” rather than “people living with bipolar disorder”. This kind of controversy reminds me of the “big enders” versus “small enders” opposition in the parliament of Lilliput. Ashenden’s focusing on terminology helped obfuscate the many positive elements of Miklowitz’s speech including the doctor’s insistence that we avoid the temptation to just take a pill and be done with it as far as healing goes. Mikowitz also emphasized the importance of personalizing information given to patients about their disorder, to allow patients to design mood charts that worked for them, and to encourage family members to get therapy themselves. All these points and more (see Lynn’s article) were lost by Ashenden when he dissed Dr. Miklowitz for the use of the term “bipolar patient”. “Don’t put a label on me!” cried Ashenden. And so he brought back a memory….
Twenty five years ago, a woman I was hanging around with at what time exploded with words like this: “I hate judgmental people. They make the world so much worse. It would be so much better if we didn’t have so many judgmental people around.” I had to restrain my laughter. Did she not see the degree to which she was the judgmental one? When faulty, judgment reduces and ejects everything except the pretense of one defining quality. Did Ashenden stop to think about his extreme judgmental evaluation of Miklowitz, one that reduced a compassionate talk to one phrase that the former head of DBSA thought was going to get us all locked up by an evil establishment?
Abuse precipitates many bipolar episodes, Dr. Miklowitz noted. Mood swings make it impossible to treat Post Traumatic Stress Disorder. There is a need to medicate and to offer therapy. I have to say that I agree with this assessment. I had considerable trouble facing my PTSD before I was put on lithium. Even now, I have problems.
There is a more extreme view that gained some voice at the conference. That was that our symptoms are entirely the result of trauma and that the medical establishment would rather sedate our symptoms into nonexistence than admit to their origins.
Dr. Rosenfeld was besieged during his talk by people who were eager for non-drug solutions such as Trans-Cranial Magnetic Stimulation. Rosenfeld reported an 80% success rate with the procedure, a fact that gave many in his audience hope for the future. Among them were people who had been through multiple ECT treatments with poor results. TMS could reverse those failures. While many will be helped by this, drug therapy will remain part of the equation for depression.
Meds have clearly helped me, but I have my nights when I am haunted by demons of my past or my disappointment in my lack of achievements. Therapists will often avoid talking about these things lest they precipitate an episode. The people who see it only as trauma-related suggest that I haven’t been put through enough pain. I see this as an alternative stigma, one that suggests that I am going through what I am going through because of character flaws. Both mainstream psychiatry and alternative approaches have driven me to a place where I feel to blame for my history. But they both have something to offer me, as well.
Epiphanies from the 2010 DBSA Conference
Posted on May 3, 2010 in DBSA Support Groups and Conferences Depression Mania Pointers PTSD
Except for that space of time late Saturday when the constant crush of people wore me down, I found a few answers at the DBSA National Conference. The conversations that went on between people put me in a curious place: was I really like these people who called themselves bipolar? I didn’t remember losing it so profoundly as they had. There was no episode where I thought myself God, though I could point to excessive spending and launchings into anger. For the most part, I restrained myself. And in the moments that transpired as I sat in cushioned, straight-back chairs, I wondered if I suffered from bipolar disorder at all, so well had my meds been working lately. The wash of mania seemed a dream fixed to an offshore rock.
Here and there, I found answers. A conversation with [[Marya Hornbacher]] tied my retreating to the cold vaults of my personal torture chamber to my post-traumatic stress disorder. She had a friend who did the same, she told me. I didn’t fire off into spectacular manias for the most part because I was terrified of the shakings-up that the fictions in my head wreaked. I am trying to understand these. PTSD stemming from abuse as a child — in my case by my parents and my brother who is older than me by six years (a massive difference when you are a child) — cracks joy just as it is beginning to rise. So no happy manias for me, only anger and desperate over-spendings followed by self-imprisonment where my symptoms were only seen by my wife and the people who dueled with me on the Internet.
Paula Kamen’s Sunday morning eulogy of journalist [[Iris Chang]] affirmed this. Chang’s illness had gone unnoticed — so much so that her 2004 suicide took everyone but her husband by surprise. Asians, Kamen reasoned, do not express the symptoms of bipolar disorder as radically as Europeans and African Americans. For Chang, her loquaciousness and brazen ((I use this word not to undercut Chang’s moral validity but to speak to the strident character of her advocacy)) championing of human rights were the symptoms: she flouted the decorum that Asian families expected of their daughters. The whites who knew her had overlooked this because she did not conform to the danger signals to which they were accustomed and so Chang was allowed to go mad, energized in increasing delusion by their applause.
I, too, was pressured to hold back. My family — especially my brother who I now realize was threatened by me — told me to watch my “ego”. So I crushed it so that I would not do harm by upsetting them. Though some were annoyed by me, I do not believe that people saw me as crazy until that time when I ended up in the South Coast Medical Center behavioral science unit. My depressions they knew of: only Lynn suspected my manias.
Don’t do this at home if you live with bipolar disorder.
I met a few people who chose to be off meds for various reasons, but these were all depressives. A few said they found success in a simple course of diet and exercise coupled with vitamin therapy. Others had not found any medication which helped them, so they did not see the point of being on drugs that did not work for them. I didn’t worry about any of these people because they didn’t represent a danger to self or others. They knew what they were doing and they continued to regard better and appropriate medications as a possible answer to their future problems. Right now, they could do without. I think that is a valid, well-informed individual choice.
I was disappointed by the apparent lack of understanding when I mentioned the ground-breaking agreement by British politicians to avoid using psychiatric diagnoses to attack their opposition. Many anti-stigma fighters can see the problem with labels when they appear in television programs or when law enforcement shoots one of our number, but they don’t seem to get the importance of the language used in debate as well as the British advocates who engineered what I felt what probably the most important coup against prejudice so far this year. The words we use to desecrate the good names of our enemies have this way of turning back to harm us. It’s considered keen by youth, for example, to label those they don’t like as “bipolar”. Don’t forget how common it is to call Sarah Palin “psychotic” — a term which the public taints with blood dripping off a chainsaw and other emblems of violence rather than hallucinations and paranoia which are the true hallmarks of the symptom. It is this kind of language that I believe needs to be shouted down whenever we hear it.
I suffer from psychosis. I take meds for it. And I have no desires to harm others.
Though my thoughts were private to me and though I did apologize to him in person anyway, I want to express my appreciation for the talk given by George Nostrand. I have to say that I judged George by his ebullient shovel of a beard and the fact that he used the words “alternative” in his opening remarks. Having heard these used so many times by Scientologists and New Agers as a way of leading those who truly need to be on meds off the course, I very nearly walked out without hearing him.
His use of the term was quite different. For one thing, Nostrand does take meds and views them as critical to his continued health. What concerned him was the cycle that the mental health system thrust its clients, whereby they were only managed in the event of crisis and until they were just self-sufficient. Once stabilized on the needle’s point of what bureaucrats fobbed off as recovery, the state abandoned these people when they were still fragile. When the client faltered, agencies blamed lack of resolve on the part of the health consumers and/or the care providers for the failures. Nostrand contended that agencies should not merely aim to have their clients mere self-sufficient but thriving in the face of the challenge of the illness. I feel that his and Hornbacher’s contributions were the best to the overall conference.
California DBSA Conference
Posted on August 26, 2007 in DBSA Support Groups and Conferences
It’s going to be in southern California, at the Ontario Marriott on October 12th and 13th. Here’s the brochure and here’s the registration form. (Pssst to Jane: Tom Wootton’s going to be there.)
Notes on the DBSA National Conference Part 2
Posted on May 31, 2011 in Bipolar Disorder DBSA Support Groups and Conferences Suicide
People at the conference tended to know that they were sick for the most part. There may have been one or two exceptions — such as the young woman who broke off from the Meet and Greet to have a drink in the hotel bar (Such compliance!) and maybe some of the family members. Most tracked themselves well and recognized if they were stable or in episode.
Psychiatrists call the ability to understand that we are in a state of mental disturbance “insight” and its lack [[anosognosia]] ((Which is also the term used to describe people who have suffered brain damage and do not recognize the extent to which their use of their limbs or their senses have been compromised.)) The point at which we realize things are messed up and we can’t go on living like this was epitomized by Susan Blauner’s talk. Blauner, who her therapist described as an “angry young woman using herself as a pawn”, spoke of waking up in the hospital with a tube running down her gut and her arms tied so she couldn’t remove it. A moment of terror ensued in which she realized that the pills she had choked down were coming perilously close to exterminating her. “I don’t want to die,” she thought. “But if you don’t want to die,” that still small voice of her conscience asked her, “why did you try to commit suicide?” ((I had a similar moment. No sooner had I been admitted to the hospital after considering slashing my wrists, I went up to the nurse’s station and began demanding my diabetes medications. Why, if I wanted to die, did I do this? asked one of the nurses. It was the next day that Dr. Speare diagnosed me with bipolar disorder. I hadn’t a clue, though I knew my mind was turbulent and out of control.))
Though most therapists would disagree with her model, Blauner sees her [[suicide]] attempts as something other than a mere call for help. She sees them as an addiction . The desire to put herself in a place of mortal peril was akin to what she heard in addiction groups where the pressure of the desire to do it would grow until it was overwhelming and she would have no choice but to break down and do it.
She has since risen beyond this.
The next morning, actress Laura Burke identified herself as one of the 45% who knew they were mentally ill and often dismissed because they weren’t like the people who didn’t know they were sick. Her [[schizophrenia]] pushed her to the point where she had lost her abilities to think and be expressive. She spoke of “losing the emotional wiring to feel sorrow or to feel joy” — a different sort of place from the bipolar disorder I suffer. Yet I felt kinship when she spoke of the numbing that was a response to our vulnerability.
Her perspective had its political themes. She acknowledged the Left perspective that there is a culture of fear out there that “pollutes our minds so that we fear everything except fear itself.” The common panacea of the day for this — Hope — has its own pitfalls, however. Desire for results can be destructive in its own right. When we replace the numbing — the loss of empathy for others — with the expectation that things will change right now, we kill ourselves with shame when we don’t meet them. The hope that we will meet the approval of others, of being enough is what I would call a kind of edgemanship. If we do not successfully walk the line as our illness pushes us, we fall into a state of shame.
There’s a past, there’s a future, and there’s a present. We thrive when there is a validation of the suffering that we feel, when we are not forced to deny it, to try to change it, or push it away. Life is workable. There is always “the brilliance of possibility in the present moment” which is the only place where true change can happen. Relief is to reframe your illness, she concluded, to celebrate life as it is.
Which is different from what many mental health professionals shove us towards.
I note that our pain is often invalidated. There lurks the view that we should not call ourselves by our illness because this is to lead us to failure which is marked by lack of conformity. I take my meds because I am bipolar. I will not sacrifice that self-label because it “reduces me to my diagnosis.” I call the shots here. From moment to moment, I can change this to suit my purposes and my comfort. When you tell me how I should label myself, you make me surrender control to you.
From Laura’s drama therapy workshop:
Man is least himself when he talks in his own person. Give him a mask and he will tell the truth. — Oscar Wilde
And now simply some thoughts from Clarence Jordan who believes in the resiliency of the human species:
“Two things people like to talk about when they have never experienced it: being mentally ill and being in the military.”
“Without resilience, how would you have been able to get past the trauma in your life?”
“We are seduced by our illness into doing the things we should not do — there is more incentive to be sick in our system than there is to be well.”
“Life is not a dress rehearsal. There are no go-rounds. This is it. Please engage with life.”
Notes on the 2011 DBSA National Conference Part 1
Posted on May 25, 2011 in Addictions Anxiety Bipolar Disorder DBSA Support Groups and Conferences Stigma Sugar and Fat Travel - Conferences
The first big secret divulged to me and a select group of others was that the rumor that Peter Ashenden had been fired by [[Depression_and_Bipolar_Support_Alliance|DBSA]] after embezzling most of its assets ((Ashenden left because he was offered a job working for former DBSA head Sue Bergestrom at United Healthcare. The worst that can be said about him is that he sold out to Big Insurance.)) was not true. ((Thankfully I never spread this one. Nor is it true that our next conference is going to be in Hawaii.)) DBSA had worked itself into the red due to optimistic budgeting based on the assumption that the pharmaceuticals industry would continue its philanthropic support of its customer base. [[Abbott_Laboratories|Abbott]] — long a supporter of DBSA — left the psycho-pharmaceuticals field entirely. Money budgeted was based on what DBSA hoped to bring in. This led to $400,000 in payables in 2010. The board changed it method of budgeting to a zero-sum scheme meaning that you budgeted only the money left over at the end of the previous year. This meant a smaller operating fund — 44% of DBSA’s employees had to be phased out — but payables now stand at $20,000.
“I have not given up my neuroses,” said keynote speaker [[Patty Duke]]. “I have given up my psychoses. I am just enough neurotic to make me interesting.”
Duke is a tiny, frail woman (at least as far as I can see), far in figure from the [[Helen Keller]] she played in [[The Miracle Worker]]. Nonetheless, she moved the crowd with her account of her life as a person living with bipolar disorder. “Our disability is not a label we wear,” she extolled. “I wear the label of ‘we can, we do.”
The most meaningful part of the talk for me was where she spoke of her life as a bipolar harridan who tormented her family. She confessed that “I, Patty Duke, was an abusive Mom.
It started with the verbal abuse. My children never knew who they were going to meet…These children united with each other. When I was diagnosed and treated, it took some time for them to trust me….I didn’t exhibit these behaviors at the workplace. I exhibited them as soon as I got in the car, as soon as I got on the car phone. I exhibited them on my family.
Many mothers stood up and confessed to similar predicaments. The men were silent, but I think they knew what she was talking about, too. I, for one, resisted having children in part because I feared my rages. In the 23 years of our marriage, I have never hit or threatened to hit Lynn, even though my disorder seethed and overflowed. I attempted to break keyboards over my knee. I punched the wall. Still, I realized how easily the still hand could turn to a slap across the face. When you united them, they could push and a child is so small. Little bones encased in the slightest sack of skin and flesh could be broken like this. I feared the big man who could hurt. But now, I look at the long loneliness ahead. Other people my age already have grandchildren and children in college. What bonds can I form with my peers? My disorder and my consciousness of it have cost me life.
Near the end of her talk, Duke said “Our disease used to be a death sentence.” It still remains a prison cell for some of us.
I started overeating after I surrendered my previous tension-cutting activity which was to chew on a pen and roll it around between my incisors. This not only wore down the teeth, but also ground a roundish hole. You could place any writing implement there and see the fit. I had to give this up because I started taking my oral health seriously. My dentist said the habit — along with my routine failure to brush — had to cease. So my nerves led me to substitute food as the all-natural anti-anxiety drug of choice.
Linda Chase LCSW said that it was all in the hands. She observed that the victims of emotional eating were people who moved their hands toward food even when not physically hungry. It was compulsive and uncontrollable, a self-destructive attempt at self-help. Serious eating disorders may result from it, but it can be overcome through treatment.
People do it for pretty much the same reasons — save one — that I chewed on my pens. It comforts, sooths, nurtures, numbs, sedates, and distracts. Through the extra-sized burger on your plate, you can escape painful emotions. Tension, anger, or frustration can be discharged by the rhythmic motions of your jaw. Some people reported that the comfort came from the larger body size they attained as a result. People feared you or they did not desire you sexually. ((This could also be true of someone with bad teeth as I had.)) Intimacy could be avoided.
There’s a cycle that we emotional eaters follow. First comes the cultural body ideal which suggests that you need to have the same svelte figure that you had at age 20. As fatty tissue accumulates with age — as it does for all of us — we panic. We label our big butts or our guts as ugly. So we resort to extreme diets that approach our former selves. But this is like putting ourselves in prison. Locked away and tortured by a life in which we allow ourselves not even a single chocolate chip cookie, we go stark-raving mad. Then we find ourselves in a store buying up our comfort foods and we eat them — all at once! This destroys any good and any anorexia ((Not every objective of a starvation regime is positive)) our diet may have accomplished. We look at our recently refattened bodies and feel guilt, shame, depression, and anxiety. So to escape these, we overeat some more until we look at ourselves again, measure our bodies against ridiculous cultural ideals, and return to our prisons. Each time this happens, we gain and lose more weight than before.
95 to 98% of who experience this drastic cycle gain all the weight back plus more. What we don’t realize is that there are happy and unhappy people in all sizes. True we should eat healthily, but do we need to excise chocolate chip cookies entirely from our lives? Do we need to exercise every day, eschewing every other activity that gives us pleasure until we feel like rats on a wheel? It is healthier to be large and fit than to be thin and unfit.
I liked some of her suggestions: First, seek a stable weight. I am aiming for 220 pounds rather than the 180 pounds of my youth for example, and when I get there, I will do what restraint and what necessary eating to stay in that region. Second, avoid yo-yo diets. Chase does not endorse radical surgeries for controlling your weight mostly because it does not address the emotional eating issues. She also warns us to be aware that some medications cause us to gain weight and require that we guard ourselves against entering a diet/binge cycle in an attempt to control it. Third, eat when you are hungry and eat what you want. This requires that you learn to recognize true hunger as opposed to emotional gratification. Successful challengers of emotional eating stock the foods that they occasionally love. Instead of turning your kitchen into a desert island, have those chocolate chip cookies around. I am diabetic. But I keep my favorite foods around, marking very carefully how much of each I eat and not eating too much of anything. Fourth, love your body as it is when it gets fit. Be nurturing towards yourself so that you don’t stampede into bad eating habits. Exercise in ways that give you pleasure. ((I love to plug in my Droid and listen to music when I get on the treadmill. Losing myself in the music helps me move on.))
Cheese pursued me everywhere. It arrived on the table in the Southwestern-style lasagna the hotel served for lunch during the Chapter Leadership Forum. It lurked on the pizza they served for those who went to the Friday night focus group. It lay in wait on the sandwiches they served for lunch on the main day of the conference. The hotel staff spared me the suffering a migraine or starvation by bringing me steamed vegetables on the first day’s lunch. I skipped the pizza and ate a salad rich in pickled peppers. During the second day’s lunch, I stripped the mozzarella from the turkey and passed it over to my friend Chato. The others at my table assumed that I was lactose-intolerant. I explained that I could drink milk, spoon up yogurt, and enjoy the cheesecake they brought for dessert. The [[tyramine|tyramines]], I explained, were what spoiled my equanimity. No one had a clue what those were.
Charles Willis got me to thinking about how a child is a captive audience who often does not get a chance to learn how to establish boundaries for her or himself. Parents can insist that their opinions reign supreme and that the child must internalize them. This can be the source of much misery later in life. And I will define this destruction of boundaries as one of the hallmarks of abusive parenting.
I think that abusive parents destroy boundaries because they, themselves, have trouble having them. They feel impelled to reach out and encompass their children. In the abusive family, the members are not allowed to accept their condition — they must drop the walls and be their condition as the hierarchs of the family define it.
I told one mother who was worried that her depressed sons would end up as failures that I personally had been sucked down by such thinking in my parents. I was told not to seek care for my illness. My family members worried that they would somehow be accused of doing what they did (of all things!) It meant the ruin of my life. I’m not sure Willis understood where I was coming from, but that is what issued forth.
The key to recovery is to acknowledge feelings and exert choice in how we respond. We may not be able to control our triggers, but we can plan for them. I can agree with this.
To be continued.
Is “High Functioning” Stigmatizing?
Posted on May 8, 2015 in Civic Responsibility Stigma
Some advocates for the mentally ill think we are doing too much for “high functioning” patients. “High functioning” is not, as far as I know, a word that anyone with a mental illness applies to herself, but is a label affixed to our records by social workers, other mental health workers, and bureaucrats. It signifies that the person in question is able to care for herself without assistance from caretakers or government programs. For the patient, it feels like a kick in the pants and, like most stigma, is based not on how the patient feels but on an outside evaluation that culminates in a “I know what is good for you better than you do” prescription.
A speaker at a DBSA conference that I attended some years back described what happens when a person is labeled “high functioning” too soon:
What concerned [George Nostrand] was the cycle that the mental health system thrust its clients, whereby they were only managed in the event of crisis and until they were just self-sufficient. Once stabilized on the needle’s point of what bureaucrats fobbed off as recovery, the state abandoned these people when they were still fragile. When the client faltered, agencies blamed lack of resolve on the part of the health consumers and/or the care providers for the failures. Nostrand contended that agencies should not merely aim to have their clients mere self-sufficient but thriving in the face of the challenge of the illness.
A Hemorrhoid in the Back of the Throat
Posted on November 18, 2008 in Bipolar Disorder Originality & Creativity
I spent most of my last two years of therapy complaining in single sentences about how I had lost my voice. I was perusing less poetry, writing less about myself.
“Oh maybe you need to write about other things or take a writing course” she would say to me. Her panacea was to send me to the University of California at Irvine where I would earn a degree in the writing program. That was her cherished evidence of a cure, a piece of paper that said I had survived two to three years of the rogueries of criticism ((In graduate school — where I failed largely because I was in a severe depression — I often had a hard time speaking up for myself, especially when the things people said about me were out and out erroneous. Not having a degree sometimes means I lose pissing contests over points of grammar, but otherwise I don’t miss it. What I was trying to tell her that I missed was the excitement of the ants crawling over the windowpane or the beauty of the coarse skunk hair on the sidewalk.)) . I just wanted to see material that shook a limb.
Readers of my blog noticed the change. A few left and have not returned. I started publishing more about politics, funny videos, the occasional photograph. Pieces about the details of my life and feelings got a shot of muscle relaxant. You see, the other rule of her therapy seemed to be that we discussed emotions for one sentence and then had to move on. If I felt upset about the way someone treated me, I had to mutter a little mantra about how maybe they were right. “So and so said that the earth was flat.” “Well, maybe they are right.” I grew more and more depressed under her care, focusing more and more of my time on not talking about myself. My therapy sessions became like my blog. The high point of our last months was the little time that was devoted to preparing me for the possibility that all the secret racists (they were, there, she assured me) would come out of the closet and vote McCain into office.
Finally, after a few months of my stonewalling against trusting her, we gave up. And I don’t think she has a clue why I agreed to leave her care. The miracle is that in the last few days, the toes of my bloggings have begun to wiggle a bit ((I’ve never been more than a quick witless wit about politics, so I suspect you will be seeing less of that: if that’s what you came for, I am sorry.)). The hemorrhoid that had somehow migrated from my colon into the back of my throat and the top of my spinal column shrank and went home. Paralysis departed. Fingers began to move. I stopped to read a volume of Garcia-Lorca’s poetry.
A few weeks ago, at the Calfornia State DBSA Conference, I heard Dr. Kent Layton ((who worked with J.P. Feighner, one of the authors of the description of bipolar disorder in the DSM IV)) describe the difference between someone with ADHD and someone with bipolar disorder. When you put them up against an obstacle, the bipolar person explodes in rage. Mea culpa when in episode. The sufferer of ADHD, on the other hand, just flops over. Gives up.
Throughout my therapy, I wondered why I had lost the will to write. We never went into depth on this — it was another of those “Well, you’ll get over it” moments. Perhaps there was a diagnosis sitting right in front of me: beneath my bipolar was some kind of attention deficit disorder. Take away the bipolar and all the energy that had produced poetry disappeared. Or maybe there was a lesser wall, one the right kind of therapist who knew something about creativity could have taught me how to clamber over. Never once in my therapy did she invite me to bring my poetry or my photography or anything I held sacred. Our sessions suffered from a deficit of attention when it came to matters that meant a lot to me. We ended up never talking about them and I made myself take the blame for it.
I wanted to change and grow, but not on her provincial, philistine terms.
So here I am talking about myself again, ten days after I ended therapy. Think there might be a connection?
Sneaking Off
Posted on October 12, 2007 in Photography Site News
I’m back to travelling: I’m off to a DBSA conference until Saturday night. Not going very far.
In the meantime, please visit my gallery and check out the latest photos in my Arizona and Utah albums.
I’d like to explain why I insist on photo comments in the gallery and why I insist on registration. First, I like to see how you react to individual photos. The best place to make the link is at the gallery. Second, if I allow anonymous comments, I will be spammed out. So take the time to register or to retrieve your password. Let me know what you like.
Thanks for your insights.
Written on the Streets
Posted on October 26, 2005 in Silicon Valley Stigma Travel - Conferences
It’s wet about five miles away and dry here in Mountain View They fed the library steroids since the last time I came here in the late 1990s. A large, pillared building stands where they used to squeeze a few shelves and a reading area about thirty feet below where I am now sitting.
We’re back where we used to be in the late eighties and nineties. Back on familiar ground that floats me or bends up to press a needle up my spine, depending on the memory.
I remember faces that I dread to see. I remember others which make me glad and I hear that they are very sick or have left the area. Streets roll out like scrolls upon which are written my adventures or misadventures.
We were driving down Middlefield in Palo Alto. The darkness pressed down bluely. As we approached the corner of Loma Verde from the direction of Oregon Expressway, I said to Lynn “This was the scene of one of my worst manic road rages.”
“I don’t remember,” said Lynn as she braked to a stop.
“Good.”
I went through the worst of my disease here, learned — in retrospect — how ignorant and cruel people could be about mania and depression. It could have happened anywhere that I happened to choose to live between the ages of 25 and 40, but it was here that it did. Cavafy told himself that you could never leave the City because the City was always inside of you. In the night of the brain, I learned, this is very true. Streets made of serotonins, dopamines, and norepinephrine run from neuron to neuron; it is when the tracks break up and the static pulses jump between the stripped sheaths that we become lost in our own heads. Training of thoughts, diet, and exercise do help, but they are not enough. You have to adjust the chemical balance, too.
I refused medication here until 1994 when I went on Prozac. Then in 2005, I had to admit to myself that there was more to my problem than depression. I followed the diet, I did the exercise, and I watched my thoughts as they became more and more frantic, less focused, and concentrated on a grandiose vision of the power of my own mind. I learned that I was bipolar.
What if I had had this diagnosis earlier? What would have happened to me here in Silicon Valley? Would I have been better loved by the cruel, hateful people or would I have just had the sense to avoid them, to find better friends? I was involved in the peace movement here, which like many other movements has its silly rivalries, antagonisms, and gainless aggravations. The way that I participated was a symptom of my illness, which is partly physical and partly personality. Not all the problem was me; in the abcess of bipolar disorder, the idea that it was drifted in acid.
Someone brought up a local peace movement activist in a glowing light. I remember the fellow for being an impediment in my side when it came to speaking locally about my trip to former Yugoslavia. Though I now mark it as an instance of mania, many people found my lectures helpful and informative. They learned aspects of the conflict that they didn’t get from either the mainstream press or even the left. I would mention something to this man and he would say things like “Well, duh”, then tell me some fact he’d gleaned from his leftist connections which I knew to be out and out untrue. It was like having your very own George W. Bush on the left. Once he scheduled me to speak and then, at the last minute, cancelled me for a speaker on El Salvador because “it was more recent”. I turned my back on his rudeness, realized that he was a cad. One thing you could say for me that you couldn’t say for the average sociopath is that when I left, I left for good. You could not get me to go back and I didn’t.
Last night, Lynn and I had dinner with Chris of Regula in a Nepalese restaurant along Lombard. We discussed the usual issues of prejudice. I was hypomanic, so I gave him a lecture about bipolar disorder. Chris listened respectfully and assured me that I wasn’t losing it. At one point, we looked across the table at each other, me the bipolar at the gay man.
“You know when they need someone to pick on,” I said, “they go for two groups: the gays and lesbians and the mentally ill.”
It is more fashionable on the left to champion the gays and lesbians than the mentally ill. When the middle or the left speak about us, they do so in reference to the homeless. The middle says “Just take your meds and stop whining.” The Berkeleyesque Left often speaks about the “right to see reality as you wish, so stop your whining.” The Right likes to say “You’re just lazy, stop whining.” Regardless of the political slant, the appendage “stop your whining” is a constant theme.
That’s written all over the streets of Mountain View and Palo Alto for me, perhaps because it is Mental Health Week and I am going to a DBSA conference over the weekend. I have not been here for five years. Rain slicks the street and I am angry at the purblindness of those who can vent so readily about the war in Iraq, Bush, liberals, gays, and whatever else you want to politicize, but who spend so little time learning how to practice a little kindness. I know they have no clue because I have seen how they act around the mentally ill and the homeless, how they ignore them and make them invisible.
They do it here in Mountain View just like they do it in the Orange. They talk about all their great programs but when you look at it, the message is just the same. “We did all this for you, so quit your whining.”
Living Under 5000 Feet of Sandstone
Posted on October 13, 2005 in Moods Travel - Conferences
At the weekend DBSA conference, I met a woman who suffered from ataxia. Ataxia is medicalese for “clumsiness”, an illness where you begin to lose control of your muscles. The National Ataxia Foundation identifies two different types: hereditary and sporadic. In the latter, the disease appears spontaneously, without any family history. The woman who I met suffered from this variety.
She squirmed behind a stainless steel walker, then chose a place in the back of the room. Sometimes a young African American man accompanied her, not as an attendant, but as a friend and an equal in bipolar disease. Her hands shook and flipped backwards as she gestured. Her legs wobbled. Within the wobbling was a fine shaking that covered her whole body. When she talked, her tongue lolled in the way of her words. Think of a woman as a river, meandering and sometimes dashing forwards as a rapid. She was 42 years old.
Doctors knew nothing about what caused her neurological breakdown. I have a local friend who also suffers from the illness. “I wish they would just give it a name,” she told me once. “I wish it was MS. But they don’t know. The doctors don’t know. They just tell me that it is the result of a series of small strokes.”
The woman I met in Fort Worth reported similar prognostications from her doctor. All she knew was that she grew steadily worse as she grew older. “I wish I had paid more attention to the symptoms when they first appeared. I didn’t do anything until I couldn’t hide it from my friends and family.”
She is on lithium, a drug that can spawn mild ataxia. For example, my hands shakes almost constantly. I’ve tripped on the stairs more than a few times.
No one knew if the lithium caused her condition. She was reluctant to go off it because, like many of us, she climbed the invisible ladder of mania and kept going. Lithium dammed the eroding force of mania. This woman did not want to go back there.
Having bipolar disorder is bad enough: having another neurological disease on top of the bipolar makes you feel like a fossil bed squeezed under 5000 feet of Navajo Sandstone.
Deep in the Heart of Texas — Oh My!
Posted on October 7, 2005 in Travel - Conferences
I know, I know. I swore up and down and all around that I would never ever set foot in the state of Texas (which despite claims to the contrary is not Shrub’s home state) and by the time this appears on my blog, I shall be there. Right at the heart of it all: Fort Worth(less).
I applied for a scholarship last May when a friend brought a few application forms to my Saturday morning DBSA meeting. And lo! I was granted the privilege of being a token California at the annual DBSA conference. When you get the money, you go.
Ah well, even I sell out now and then. Forgive me. I’ll be looking for computers or InterNet cafes wherever I go. And I made sure to pack my lithium and my lacmictal to prevent those embarassing moments….Even if it is a conference of bipolars, you can’t be too careful.
Is “It Does Something” A Reason for Supporting Murphy’s Law?
Posted on May 18, 2015 in Accountability Insurance Medical Ethics Psycho-bunk Stigma
The proponents of Murphy’s Law have been using mass murders to frighten people into a law that erodes HIPAA protections, requires states to implement forced medication, and politicizes the Federal agencies responsible for overseeing mental health concerns. I have watched as one of their leaders likened support groups to appendectomy patients performing the surgery on the patient on the next gurney, called for the return of mental hospitals, called nonprofits aiding the mentally ill “the mental health industry”, and urged that we should stop talking about stigma. This gives me every reason to distrust him and any program he endorses, but many have bought his argument that we should support Tim Murphy’s Families in Mental Health Crisis Act because “it does something for the mentally ill”.
Now I agree that the system is broken and in deep crisis. Even the best community mental health services are in constant danger from funding cuts and fail to deliver services to all the afflicted. Group homes are privatized and overcrowded. Patients end up in jail because they can’t get treatment through other channels.
