I have been mostly stable since 2008. There have been a few interludes where I slipped either into mania or depression, but I managed these so that they did not spiral out of control. So I have nothing to worry about, do I?
There’s plenty to dread. Last week, as regular readers of this blog know, I had what is known as a breakthrough episode. In this case, it was a mild case of mania that I rode out with the help of sedatives and extra sleep, literally dreaming myself into a depression. I am not like many people with bipolar in that I do not fear depression. When I am depressed, I don’t have the energy to arrange a suicide. So it is not like a mixed state where I can pull the implements together and actually begin the death-by-my-own-hand. Still it debilitates me: I remain silent for long periods of time, talking to no one, writing nothing. Even now, I struggle to find the words for what I want to say. This is the nature of The Beast and there is nothing flamboyant about it now, just a gray, blubbery monster which lies on top of me and smothers me.
Mania scored my consciousness in steep peaks and troughs that never descended into depression the last two weeks. I got into arguments and I loved them too well. It was easy to laugh and the laughter fed itself. I quoted scripture at my opponents, both religious and secular. The color red seemed especially intense. Once I thought I saw someone run across the hall when I was alone in the house.
I thought I had an easy answer that I also feared: my Vyvanse had pushed me up beyond my normal humor. But when I went to take the little yellow capsules out of my lineup for the week, I discovered that I had not been taking them! So the psycho-stimulant was not guilty.
What was causing me to erupt? I didn’t know for sure, but I knew what I had to do. I took an extra Xanax to force myself into several extra hours of sleep, avoided sites that pricked my optical nerves with shimmering and pulsing light, and meditated.
There’s a mystery in the genetics report that I received from 23 and me and ran though the Promethease analysis engine: I have multiple genes that predispose me to lupus. I don’t have lupus but an uncle of mine did. It also says that I could develop multiple sclerosis and that I am at risk for childhood leukemia (I dodged that bullet.) My risk for bipolar disorder is only average. It also says that I am tall (true — I am 6′ 6 1/2″), probably have brown eyes, that risperidone works well for me, and have a tendency towards diabetes and obesity — right on all counts, though I am working to reduce my weight. All these things are in my genes. How is it that I show some of the predicted traits and not others?
Some might jump to the conclusion that genetics just gets these things wrong. No, the genes are there for certain. I am prone to lupus and MS. I could have had childhood leukemia. So why didn’t I if genes are the code that determines what I am? Why do I have bipolar disorder?
Now and then, you run into some parent who slaps you with what they think is a winning argument for Murphy’s Law: “my son/daughter with schizophrenia/bipolar disorder thinks Assisted Outpatient Treatment”. If patients are flocking to support this controversial forced treatment, how can people like me oppose Murphy’s Law?
When I look a little deeper, I discover something: many of these proponents are actually soft supporters. What they like about AOT is that it is just about the only way for them to get treatment. So what they really support is community outpatient clinics — the ones that have been denied us all along since the states emptied out the mental hospitals and delivered several of us to the streets.
Liking AOT does not mean that they necessarily like other parts of Murphy’s Law such as the partial dismantling of HIPAA benefits, the lack of protection for Advanced Directives, the hogtying of support groups, the lack of safeguards against abusive caretakers, dismantling of support for patient rights organizations, etc. Murphy’s Law casts a wide net driven by stigma. It fails to fund community mental health centers except as a weak pilot program in ten states. We need a better vehicle that really helps the mentally ill.
Thirteen years ago, today, I launched this dangerous experiment. It ended a long silence. I had a place to write once more.
My wife gave me the idea. Keeping a diary that others could read and comment upon appealed to me. The abUSENET — the only other place where one could publish long articles without having to go through an editor — tended to punish those who spoke about themselves, their opinions, and their struggles. A blog let you do all these things and you could quietly control comments so that you could keep things civilized even though this discouraged many people from leaving them.
Many subjects have passed these pages: the war in Iraq, elections, daily life, my travels, the weather, my dreams, and my struggles with depression and, after my diagnosis, bipolar disorder. I lost more than half of my regular visitors because of my pacifist views during the War and most of the rest when I started writing about bipolar disorder. My effort to bring them back or find new ones has been difficult and disappointing. Every day I ask if I stopped writing, would people notice? I soldier on, sometimes in despair, sometimes in the confidence that what I have to say will mean something to someone.
13 years is a long time. I am still here.
Two doses of Xanax in succession seem to have brought me out of the mania. I would rank myself at a six on the zero to ten point scale that we use in our support group. Colors don’t seem as bright, I am not attracted to every woman that I meet, and my driving is mostly good.
When I went hiking yesterday, I found myself pushed to the point of exhaustion. I carried more than anyone because I was a group leader and needed to port a first aid kit, extra water, etc. but my bones could not take it this day even though I took a harder hike on Thursday night with no ill effects. I got back from Vulture View all right after a couple of people took some of the weight off my back, but I was weak for most of the day. The message I am drawing from this is to get back into my routine of exercising more. So on Tuesday, I am going to do the Dreaded Hill hike again and maybe again on Thursday with some variation.
Today we went with a friend to Bunnyhenge and Fashion Island in Newport Beach to mark Solstice. The worst thing I did was sing some Tom Lehrer songs on the way back, so I am confident about being on the mend. The weakness on the hike worries me more than the hypomania at this point: I wonder if it was the Xanax?
The whole business in Charleston has brought me out of my equilibrium and into the high, holy state of mania. The signs are clear: a brilliantly clear feeling of energy, combativeness, difficulty dealing with difficult people, the color red seems unusually intense, and a slight shaking that no one can see but I can sense. More correctly, this is a hypomania because I have not launched into paranoia — though I intellectually appreciate that my neighbors will not take kindly to my living with this illness, I do not think they are reading my mind or seeing through its invisibility; nor do I feel that I am indispensable, a great gift to humanity.
I posted a photo to Instagram identifying my face as that of mania. One friend replied, “You look ordinary”. “Yes, that is the point. I have an invisible disease.”
Alternative medicine is filled with people filled of warm and fuzzy, right? Not Truehope. They have written Natasha Tracy a letter to the effect that if she doesn’t take down a series of articles that she wrote documenting her experiences and opinions about their product, they will sue.
I have watched Andy Behrman (aka Electroboy) speaking against the dangerous effects of Abilify when it is used as a mood stabilizer for a couple of years now. Now, Andy might correct me, but I haven’t heard him announce that he has received any letters threatening court action against him. Nor have I heard anyone else who has declared that certain medications haven’t worked for them or given them harmful side effects complain about harassment from Big Pharm’s lawyers.
Proponents of alternative medicine rail against the profits of Big Pharm, but what they don’t tell you is that their end of continuum rakes in $4 billion dollars a year; and, what is more, when they call themselves “homeopathic”, a 1938 law protects them from having to conduct clinical trials. Scientists have nevertheless tested vitamin therapy several times over the last few decades. Every time, vitamins have worked no better — or worse — than a placebo for treating mental illness. A couple of supplements have proved efficacious, however: N-Acetyl-Cysteine complements lamotrigine well and fish oil and flax seed oil have a moderate effect on depression. So Science isn’t against finding alternatives to Big Pharm’s meds; it just expects them to work.
The “research” that led to Truehope is this: a hog farmer fed a certain vitamin combination to his pigs and thought it made them happier. He then marketed it as a product which could be used to treat mental illness. He has accumulated testimonials from people who claim that it works for them, but aside from one psychiatrist who uses unknown techniques to vet these claims, he has funded no reproducible clinical trials.
My testimonial is this: I have known a few people who tried it and they swore — despite the fact that they were buzzing like an old light bulb with mania or suffering from depressions as deep as the doodoo on a hog farm — that it was helping them. I don’t trust anecdotal evidence, even when it agrees with my own views. I will sometimes cite them, but only as illustrations of statistics. (And I warn people when they should be careful — for example, carbamazepine helped quell my manic storms, but statistics show that it doesn’t help everyone.)
Natasha’ crime seems to be that TrueHope didn’t work for her. TrueHope is threatening to sue her for slander, probably hoping that her relative poverty will cause her to back down. This blog takes the position that this bullying underscores the flimsiness of TrueHope’s claims. It will now be up to them to prove in a court of law that their product works; this means they will have to perform some actual science. I would like to see that day and I look forward to the line of scientists waiting to sit in the witness chair who will skillfully rebut TrueHope’s ongoing fraud.
This is adapted from an article about 11 Ways White America Avoids Taking Responsibility for its Racism. It didn’t take much editing to make it relevant to those of us who challenge stigma for the mentally ill — not much at all. I see the same games being played all the time in certain advocacy groups “for the mentally ill” to prevent and avoid frank discussions among caretakers and patients about stigma.
I was scolded again for a variation on the “I am bipolar” line, this time for using the word “schizophrenic”. “I am not my disease” my attacker said. “I am diabetic and bipolar,” I replied. “I am not my disease, either.” I asked her to show me a study that showed that this self-identification was harmful. Silence. Then she denied that she had attacked me; I made it plain and clear that she had; and I told her to “own it”.
No neurological link has been found to show that how we self-identify has any effect on our recovery. Where did it come from? Some therapist who had read Frogs into Princes, perhaps? I had one who corrected me every time I called myself “bipolar” which disrupted my train of thought. In the end, she dropped me for not being able to reform to her satisfaction. I was concerned about anger issues and if there is one thing I got out of that experience was being able to hold my peace when someone was being an arrant ass.
Listening without judgement is the hallmark of good mental health first aid. I have often listened to people who said some horrid things and who used strings of profanity long enough to hentai Henry Miller and strangle him several times over. I said nothing. I knew that they were talking about their pain. So why did my therapist think it was appropriate to waste our sessions correcting me? I never thought to ask her for studies — that realization came later when I actually looked for research on the issue and found none. From my informal observation of people in my support group, I haven’t seen people who say “I am bipolar” go spiraling into episode any more than those who say “I have bipolar disorder”. I suspect my therapist at that time had read or heard something as unattributable as the contention that 90% of bipolar marriages fail.
If she had looked it up in a dictionary, she would have found that schizophrenic and bipolar are adjectives. I half agree with her about the harm, but only so far. When some newspaper writes about schizophrenic relations between two nations or some boyfriend whines about his bipolar girlfriend, the terms are used inappropriately. But it is appropriate usage to say I am a bipolar man or I am a bipolar photographer or, simplest of all, I am bipolar. It carries nothing of the weight of the club that was used to castigate me.
Sane privilege may explain why therapists have been so quick to grab onto this. It lets them define how we may call ourselves. When I saw a woman being shamed for calling herself bipolar at a class a few weeks ago by a social worker, I saw a medical professional putting a patient “in her place”. “We aren’t our disease,” was the argument then and always.
Yes, but the disease is part of what makes us who we are, just like white, middle-classed, male, and diabetic help form the gestalt that is me. I don’t reduce myself to any one of these, but the combination is my identity. Knowing that I am bipolar is part of what it takes to understand me, like it or not. I get to decide what I present as my face to the world.
So why do some patients lash themselves to the mast and ram their ships of mind into those of us who “err”? Desperation is one thing that comes to mind: therapists and self-help book writers have convinced them that if they do this, they will be better. Fear of stigma is another powerful motive — they have heard outsiders use the phrase far too often as a slur. But I am an insider. Why choose me? Why am I being blamed for perpetuating stigma?
I can only guess by the origin and its effects. First, I suspect that it originates with people who do not live with the disease themselves, who feel left out when we differentiate our identifies and our interests as separate in some ways from theirs or who were upset by the slow progress of some of their clients. They might go so far as to call themselves “human beings” to avoid all the nasty baggage that comes with my calling myself white, middle-classed, bipolar male, which is to deny my uniqueness, my privilege and nonprivilege, and my inclusion in certain larger categories. They get the same benefit from hectoring us without acknowledging their superior position as medical professionals and caretakers as white people do when they say that despite all the unchecked benefits they get from being white and their demonization of poor black people that they are not racist.
Second, it puts the blame for our illness on us. By referring to ourselves in this way, the logic proceeds, we are making ourselves sicker and more dependent. It is not the fault of caretakers or therapists or psychiatrists or other mental health professionals or even of the disease! We engender our own problems by our use of language! This line of reasoning leaves us spinning in the wind and makes us feel guilty for a condition that we had no part in creating.
Third, it breaks those of us who are afflicted into warring factions, arguing about something that isn’t important. We help them control us. One can liken this to the relationship between the upper class and the working classes. High above, there are millionaires living in mansions. The working class lives in squalor. They would resist and attack the privilege of the upper classes, except that the latter have recruited some of the middle and working classes to serve as police. Police receive some special benefits such as the right to violence, but are otherwise little different from the working class people who they club. There’s not much difference between me and those who scold me for my usage of the word “bipolar”, but the former are all too willing — for next to no money if any at all — to do the work of the therapists and other caretakers in preventing a consciousness from forming.
Fourth, fighting about this petty issue keeps us from focusing on larger, more important issues like housing, adequate access to medicine, and the kinds of stigma that really do hurt. We who are mentally ill don’t fear each other, but we do fear what the sane can do to us and so we bicker amongst ourselves while letting their control over us go unchallenged.
A new consciousness of ourselves as we relate to our illnesses is required here, one not founded on silly semantics, but on the common ground we hold with others who have our illness. I stand up whenever I see someone abusing someone else for saying that they are bipolar or schizophrenic or autistic because, yes, a piece of me is my disease. Understanding that makes me less likely to let my guard down when it comes to taking the meds. Finding that same disease in others makes me feel less alone. Sharing our experience makes us stronger and better able to state what we need and not what some therapist or caretaker thinks we need.
This squabble needs to end. Let accept our diversity and our commonality.
A similar silliness occurs over the use of the word consumer versus patient. I find consumer stigmatizing because it implies that my diagnosis is just another product on the market. What do I consume? is what a friend of mine asks. No one has a legitimate answer except to make the suggestion that calling ourselves patients somehow mauls our consciousness. Idiots.