There but for the grace of God

police line

This is the graphic they used in the media when describing my friend

In August 2011 a friend of mine shot and killed her abusive husband.  When she was arrested she was allowed a mental health evaluation only if her own private insurance would pay for it, even though she told them at the time of her arrest that she was mentally ill.

Last November, after a fifteen month wait, she was convicted of “voluntary manslaughter and possession of a firearm during the commission of a crime.”  This was a deal – her original plea was “Guilty but Mentally Ill”.

My family and I have tried for a year and a half to contact her.  Almost everything we sent was returned, though the more expensive items like Christmas gifts simply vanished.  We have no evidence she ever received anything, and never heard a word from her.

Until now.  We’ve received a letter.

It’s nothing fancy.  Just a few lines to let us know she’s surviving.  She wants to tell us what happened, but all her mail is read before it’s sent.  All she could do it tell us that she’s alive, she loves us, and where she was – or at least where she was when the letter was written.

cat heavenIt was enough.  We’ve been in overdrive ever since.  All the letters sent to that address were returned – she was transferred.  Again.  A call to the prison she was sent to resulted in more red tape.  Transferred yet again.  But finally, this morning, I think I have her address.  I spoke to the sweetest lady who was so exasperated.  Not by us – apparently I’m not the first person who called!  But by the system that can’t even give a straight answer about the location of a prisoner.  I *think* I know where she is.

I’m sending her this picture.  She loves cats – she had about a dozen at the time of the shooting.  They’re all gone now, of course, along with everything else she ever knew.

Why did it come to this?  I keep thinking over and over that had things gone slightly different for me, it could be me in that cell, not her.  I’ve been on the wrong side of the locked door 5 times.  But I was always let out in the end.   I got the help I needed.  I was given the time and space to try to heal, without anyone threatening me.  I had a strong support network in my family, and those friends strong enough to remain in my life.

She had no one except a guy who beat her, and her cats.

If “there but for the grace of God” means anything to you, give your family a hug tonight, and an extra cuddle to your pet.  When one is mentally ill, so little stands between you and her fate.

“Coming Out” as Mentally Ill – the psychiatric Catch-22

c22If you enjoy black humor or satire, you’ve probably read Joseph Heller‘s classic “Catch-22“.  Published in 1961, it describes the paradox of a situation that is contradicted by its very nature.  In the story a soldier wants a doctor to declare him unfit, because he does not want to fight.  The problem is that anyone who wants to fight is insane, and so by definition is “unfit”.  If you do not wish to fight, then clearly you’re sane, and “fit for duty”.

These days, “Catch-22” has expanded to cover just about any no-win scenario.  In the case of the mentally ill, one of the basic questions every person diagnosed must face is “do I tell anyone?”

prideAnother commonly used phrase in pop culture is “coming out”.  Usually it is applied to someone who’s gay.  If they don’t tell anyone, they’re “in the closet” and subject to a great deal of speculation, along with a fair amount of contempt.  However, if they “come out”, let the world know they’re gay, the inevitable reaction from many becomes “why don’t they keep that sort of thing to themselves?  Why involve “normal” people?  Who cares?”   Catch-22.

Applied to the mentally ill, it’s even worse.  Currently there is a strong push toward social acceptance in the LGBT community (Hurray!!).  There is a determined support network out there that refuses to be denied.  But among the mentally ill, while there is a support network, there is only a very limited attempt to raise awareness.  Usually it’s only temporary until the next crisis comes along.

6032ed90_01-its-a-secretFor the first several years after my diagnosis I made a determined effort not to tell a soul outside my immediate family and circle of friends.  It was our “dirty little secret”.  Of course anyone who knew me even in passing understood there was something “not right” about me.  I just wasn’t “all there”.  It was acknowledged, but never openly discussed.  I was “just that way”.

I can’t remember making a conscious decision to “come out”.  I do remember being very frightened to say “I’m bipolar” out loud.  But at the time it seemed the best of bad options.  Do I let people continue to talk about me behind my back?  Or do I take the bull by the horns and essentially say “Yes.  I’m crazy.  I have a chemical imbalance that affects my brain, which in turn affects my behavior.  This is who I am.”?

bipIf I never admitted it, it does not give society permission to address it either.  Even though people would talk behind my back, no one said anything to me directly.  I used to think that was easier.  But by saying “I’m bipolar.  I’m trying to deal with it.  If you’re in my life then do the same” I took a small measure of control.  It opened up opportunities for dialogue.  I don’t feel ashamed of what I am anymore.  I’m not bad.  I’m sick.  BIG difference.

However, there’s an unexpected downside to this public announcement.  By making it known I’m mentally ill, it gives people permission to speak freely.  Sometimes they forget that even though they can now talk about the illness in my presence, that does not make it any easier for me to deal with.  At first, when I started talking about it, it opened a dam.  I heard a veritable flood of stories that usually started with “Remember when you…” followed by a vivid description of my irrational behavior, accompanied by much laughter and eye-rolling.  Guys, I appreciate that you’re still in my life.  Thank you.  And I’m glad you can let off a little steam.  But… I’m still in the room, ok?  And I’m not cured.  I never will be.  So please think before you speak.  Let’s take this in small steps.

blue_meanie_chief_and_jeremy_by_mothmanboris-d4bd4g0While “normal” people can lose their temper or become frustrated, when I do it It’s often cause of immediate alarm – I’m “acting out”.  Err, no, at least not always.  Sometimes, yes.  But at times I’m just frustrated.  The world is an ugly place and sometimes I want to jump up and down like the proverbial Blue Meanie.  Now everything I do is subject to intense scrutiny. Is my behavior due to a manic phase?  A depressive phase?  Should I adjust my meds?  Should I call a doctor?  Which, of course, just adds to the frustration.  Arg.  In addition, the people who have dealt with me longest now have their own set of coping issues.  Being the support network to an out of control mental illness is #1 on the list of noble but thankless tasks.  So a bit of overreaction is to be expected.  Unfortunately, again, because of my illness, I’m not in the best position to deal with their overreaction of my reaction.  But I’m trying, and thank heavens so are they.

Another unexpected paradox is in the medical profession.  If I’m meeting a new doctor (my life is a constant succession of doctors) I’ll be very frank with them – here’s my diagnosis, here’s what it means, if you have questions ask.  Even though they’re doctors, unless they’re in psychiatry they probably don’t know how to deal with a bipolar patient.  Most are relieved I’m so up front about it, and many ask me questions not only about how I’ll react to something, but just how to address a bipolar patient in general.  Though we’re all different (of course), hopefully I can at least offer some insight – that’s cool.

The downside is that doctors can use this information like a weapon.  In my last blog post I wrote about how I was taken away in handcuffs early one morning because of this.  It has happened to me with medical doctors as well.  The latest incident was during a trip to a local Emergency Room.  Before I realized that the degenerative disc disease had spread to my neck, I wasn’t sure what was causing the blinding pain.  I felt as though I’d been shot through the shoulder, and it never stopped.  My doctor told me to go to the ER and get an MRI.  Ok.  I went to the ER and I described my symptoms.  I also, as usual, mentioned I’m bipolar.  This normally aids in communication.  When they asked me to describe the level of pain I was in from 1-10 I replied “11.  It’s so bad I could kill myself.”

3qedboNow, normally either they’d blow that off as hyperbole (which it was) or think it was a stupid joke to try to ease an otherwise tense situation (which it was).  But because I’ve admitted I’m bipolar, this team decided to inform me that any further statements of that kind would result in a one-way ticket to the nearest secure facility where I would be put on an involuntary 3 day psychiatric hold.  Then I was asked formally if I wished to revise my statement.  Grinding my teeth I simply said “my shoulder hurts”.

I understand their reaction.  In the days of happy-go-lucky lawsuits they have to be careful.  But guys, the knee-jerk automatic response isn’t required either.  A little common sense goes a long way.  Like – you could have just asked if I was kidding around.  And yes, I agree, under the circumstances I selected my words poorly.  I was attempting to describe the worst pain I’ve felt in my life, I wanted them to know I wasn’t wasting their time by being there.  I wanted the damn MRI.  Instead I was told they weren’t going to give me any painkillers of any kind (did I ask for any?  No.) and that I should return to my doctor.  If she thought I needed an MRI she could schedule one.

*sigh*

I don’t have a good solution to this.  Because my behavior affects every relationship I have, I maintain that telling people up front is a good idea if I’m going to spend time with them.  But some people do get weird about it.  Saddled with my own weirdness I’m not in the best position to help them deal with theirs.

And so it goes.

The night of “The Voice” or Why I Don’t Trust Therapists Anymore

“Even in the wizarding world, hearing voices isn’t a good sign.”  Hermione Granger, speaking to Harry Potter.

HermioneI hear voices.  As in “I’m hearing the voices” type voices.  And no, I do not admit this very often.  Why?  Hermione said it beautifully.   Even people who know I’m mentally ill will give me “The Look” <tm> when I mention hearing voices.  You know, the nod, smile and don’t make any sudden movements look?  That look.

The specific psychiatric term for hearing voices is “auditory hallucinations”.  In other words, you register a physical sensation that isn’t actually there.  There’s two main types.  If you experience physiological hallucinations, sometimes called “sane” hallucinations, you may not suffer from any other mental health issues.  It’s thought that 1 in 25 will “hear voices” at some point in their life.

I suffer from experience pathological hallucinations.  In the past, conventional wisdom associated pathological hallucinations with a severe mental illness – usually schizophrenia.   With time the diagnosis has gradually extended to include such disorders as bipolar.

Auditory hallucinations usually mainfest in one of three ways.  The first is very dangerous.  Called a “command hallucination“, this is a very clear, distinct voice that offers a specific direction.  The command can be very simple, such as “stand up” or “sit down”.  However, they can also be threatening, such as “kill your boss” or “burn the house”.  Sometimes the threat becomes personal.  “Stab that guy, or I’ll stab you.”

Then there is “Exploding Head Syndrome“.  For example, I’ll hear a gunshot, or a rocket taking off, or sometimes impacting. It’s not distinct.  Let’s say there’s a tv on in the next room.  There’s a cartoon on and it features rockets and a gun.  That’s pretty much what it sounds like.  I can hear it, but it’s not alarming.

Generally, I hear crowd noise – the sound of a large crowd at a distance.  Imagine that you’re approaching a large room full of people, but you’re not quite there yet.  You’ll have a subconscious awareness of the sound of many voices, but none are distinct.

In addition to the “crowd noise” I can hear people speaking.  They don’t talk to me, or about me.  They’re just having a conversation, and none of them are in English.  There are two women who speak Japanese.  Maybe they’re out shopping.  I have no idea – I don’t speak Japanese.  I also hear two men talking.  These are older gentlemen, and they speak Russian.  My mental image is of two guys in a park playing chess, but again as I don’t speak Russian I couldn’t tell you what (if anything) they’re really saying.  They seem friendly, and they’ve been with me as long as I’ve been aware of “me”.

The study of voices has come a long way since I was diagnosed.  In 2001 there was only one reason to hear voices – severe mental illness.  A very dangerous kind.  But recently, the “Hearing Voices Movement” has taken off.  They reflect the new understanding of mental illness – while illness of this kind can be dangerous and harmful, there may also be aspects that are beneficial.

This is a very welcome trend!  No illness should be treated in absolute terms.  Here’s why.

It was a normal night, I was in bed, asleep.  Then, around 1 am or so, I was startled awake by a voice.  At first I thought someone had turned on the television, or the radio, or an alarm had gone off.  But then I heard it again.  This was the only time I ever heard a Command voice.  It was male, but strangely flat and devoid of emotion.  It said one single phrase.

“Children are a nuisance, and you should be rid of them.”

Um, what?

My therapist had just started a 24 hour “hotline”, which he encouraged his patients to use.  I talked it over with my current partner.  We reasoned that I might need to increase one of my medications, and I should ask sooner rather than later.  So I called.  We spoke for a while, then she asked me to call my current partner to the phone.  That was weird, but I handed it over.  They spoke for a time, then she frowned and covered the handset.  “Hey,” she whispered, “I think she called the police!”

I couldn’t believe it.  Not even 10 minutes later, two cops walked in.  They asked what was going on, and if any children were in the house.  I said no, there were no kids anywhere around us – the community was mostly of retirees.

“But you’re planning to get rid of them?” the cop insisted.  I had to admit, that was what the voice said, but I had no plans to act on it.   At all.  None.  No children lived with us.  None of my friends had kids.  None of my relatives had kids.  See?  NO kids.

handsAfter 45 minutes they explained that I needed to come with them to the hospital.  We’d sort it all out there.  Which was how, at 3 am, in front of a few curious neighbors, I was led out of my home in handcuffs and placed in the back of a police car.

They took me to the hospital ER.  They took my purse and my clothes.  It was around 4 when we arrived.  I didn’t see a doctor until 8am.  I was not given any food, I was only allowed to drink water in the presence of a guard.  I was not allowed to move even when I explained I had ruptured disks in my back and I needed to walk every so often.

When the staff psychologist arrived I told her what had happened, and I was sure that finally, with a qualified professional present, someone would see reason.  After I told her my story I waited for another 2 hours.  When she returned she informed me that I would be taken from the ER and transported to a secure facility.  I was being placed on a 72-hour involuntary hold.

I went ballistic.   I was so mad I’m pretty sure I was turning colors.  I demanded to see my own doctor, who was on staff at the hospital.  But he wasn’t scheduled to be there until the following day.  And that was that.

GROUP-THERAPY-SMALLAt the facility, in a group therapy sessions of 30 patients, the doctor asked me why I was there.  I told him “I don’t know”.  He looked at his clip board and said, in front of everyone, “It says here you attacked a child.”

From that point forward it didn’t matter what I said or did.  Every patient heard I had attacked a kid, and I was given a wide berth.  If I lost my temper again it would get even worse.  So I gritted my teeth and just stopped talking.   I stopped moving.  I sat still and waited.

My doctor arrived the next day, 36 hours after I heard The Voice.  I told him what had happened and demanded to be released or explain why not to a judge.  This is not something a patient on a 3 day hold can say.   I was released within 2 hours.

My bewildered parents came to pick me up.   I had no idea how to explain any of it.  I’m still at a loss.

The mentally ill are the most stigmatized members of our society.  Within this group, those who hear voices are even more isolated, as it’s one of the least understood symptoms.  But I’m pleased to discover that through the efforts of groups such as the Hearing Voices Movement, attitudes are slowly changing.

Bipolar and the creativity connection

There is a great deal of respect given to the medical profession.  I wish equal respect was given to the incalculable value of individual creative expression.  The “triage” reaction in the psychiatric community of “return the patient to a controlled state as quickly as possible, deal with the consequences of the drug’s side-effects later” comes at a considerable, perhaps unnecessary price.

twfWhile there are plenty of articles speculating on the connection between creativity and mental illness, the majority are at least 10, if not 20 (or more) years old.  There’s even a book – “Touched with Fire: Manic-Depressive Illness and the Artistic Temperament” by Kay Redfield Jamison that attempts to connect bipolar with great artists like Van Gogh and Beethoven.  However, the book was published in 1996.  It makes a good case, but it’s not conclusive.

celebrity-bipolar-intro-400The pop culture take on it tries to connect diagnosed celebrities such as Catherine Zeta-Jones, Linda Hamilton and Carrie Fisher with public symptoms exhibited by others, such as Britney Spears, Lindsay Lohan and Kurt Cobain.  They may have a case, but the point is that the connection between madness and creativity is openly acknowledged.

The social assumption that a genius is crazy (or “touched by the Gods”, however you wish to put it) goes back to the dawn of written tradition.  There’s been a clinical theory that connects creativity and mental illness for decades.  But only in the last 3 years have there been large, comprehensive studies on the connection between bipolar disorder and the so-called “artistic temperament”.

In 2011 there was a study of 300,000 patients diagnosed with either schizophrenia, bipolar or Depression.  The results of the study found that there was an “overrepresentation” in creative fields for those diagnosed with either schizophrenia or bipolar, as well as their undiagnosed relatives.  Those who suffer from Depression did not, on the whole, feel compelled to go into the arts.

This is a good start.  Even better, in 2012 there was a study of one million patients by the Karolinska Institute in Sweden.  Their conclusion?  “Creativity is closely entwined with mental illness”.  My favorite quote: “… the findings suggested disorders should be viewed in a new light and that certain traits might be beneficial or desirable.”

NOW we’re getting somewhere.

Pills2In my mind I’m about 15 years behind where I ought to be.  Before I was diagnosed I was writing like a fiend, and it was certainly good enough for publication.  But my mind was firing without direction, and I couldn’t focus long enough to go through the steps necessary to be published.  After my breakdown and subsequent incarceration, I was heavily medicated.  I used to call it “being placed in a creative coma”, but in truth it had more in common with a literal coma.  Unsure what to do with me, my doctor put me on twelve different medications. Lithium, Geodon, Depakote, Thorozine, Topamax, Paxil, I forget them all.  You name it, I took it, frequently combined.  I gained 150 pounds, my hair fell out and I sometimes forgot how to blink.  I could barely walk, much less write.

It took me 10 years to recover enough to be able to think, and a good deal of that recovery was to get rid of the drugs.  I went through a series of doctors, begging to find a less invasive cocktail.  One of them said, to my face, “if you’re alive long enough to complain about the side-effects, you’re a success”.   That… wasn’t constructive.

It was my OB/GYN who finally cracked the code.  She’s the one who figured out the best way to get my symptoms under control while allowing my mind to function.  I won’t offer the specific details here for two reasons.  1. I’m not a doctor and offering anything that might be considered medical advice in a blog is a bad idea.  2. We’re all different.  Even though it worked well for me, it might not do a thing for you.  Sorry about that.

Once the worst of the drugs started to clear my system, a miracle happened.  I started writing again.  My “voice” came back.  Slowly at first, but with growing confidence as the months went by, I regained my former creativity.  Bipolar is incurable, as are all the other illnesses I’ve been diagnosed with.  I’m still on drugs and always will be.  But at the very least I can think again, long enough to pound out a few paragraphs here and there.

That we’re drugging ourselves into oblivion is a given.  We’re starting that trend earlier every generation.  We’re now diagnosing children as young as age two with bipolar.  No doubt I had it since birth.  And yes, had I been diagnosed much earlier my life may have been easier.  But two years old?  Judge Judy notes, with some exasperation, that people aren’t “cooked” until age 18, if then.  Giving a child such invasive drugs during (or before) their formative years fills me with an essential horror.

In the article “Soaring Numbers of Children on Powerful Adult Psychiatric Drugs“, Dr. Peter Breggin notes:

“In a comparison between the years 1993-1998 and 2005-2009, prescriptions of antipsychotic drugs for per 100 children (0-13 years old) rose from 0.24 to 1.83. That’s more than a sevenfold increase. Given that most of prescriptions are for the older children in this age range, the rate would be substantially higher among preteens and 13-year-olds. For adolescents (14-20 years old) the increase was nearly fivefold.”

According to the Karolinska Institute, “… disorders should be viewed in a new light and that certain traits might be beneficial or desirable.”

Drugging patients into oblivion is good business for Big Pharma.  But what are we sacrificing in the process?  How many Van Goghs and Beethovens have been drowned in a sea of Ritalin?  I do understand the need for psychiatric care.  In fact, it saved my life.  But there must be a balance between our “pop-a-pill” social mentality and a creative individual on a destructive mood swing.

When will mental illness get the attention it deserves?

My father wrote this.  It was published by The Denver Post.  For those in doubt, yes, he’s talking about me.  He’s an amazing man.

Re: “Mental illness touches every American,” Dec. 24 guest commentary.

Dr. Marshall Thomas’ Christmas Eve commentary on the dismal state of mental illness treatment in the United States (and even worse in Colorado) was disheartening.

The awful truth is that mentally ill Coloradans are invisible. Where are the campaigns to help the mentally ill? What color is the little ribbon people wear to raise mental health awareness? When can I watch a huge holiday telethon to fund mental health research? When will our political leaders demand change?
Like most people, I’d never really thought about these questions until someone who suffers from mental illness asked me. She is a lady with very modest resources and her struggle to support herself while coping with her illness is heart-wrenching. Without visible symptoms or wounds, it is a never-ending challenge to get help. Her last emergency room visit began and ended with a suspicious “I’m not going to give you any drugs!” She doesn’t want drugs. She wants help.

Dr. Thomas noted that Colorado is last among all states in psychiatric bed capacity, 30th in mental health funding and, not surprisingly, has the eighth-highest suicide rate.

Surely the events in Aurora and Connecticut show how this problem affects all of us. Our governor has made a start by proposing additional funding, but much more needs to be done. Please help before another tragedy reminds us that our society has failed and continues to fail the mentally ill.

Ken HallLittleton