The well-intended, completely pointless TWLOHA movement

I just found out that March 1 is “Self-Injury Awareness Day.”  I thought that was interesting.  March 1st is my biological birthday, and I’ve got hundreds of scars across my arms and legs due to cutting.  I thought I could do an interesting tie-in for a new blog post.

While I was looking up information on “Self-Injury Awareness Day” I saw a link pop up to the “To Write Love On Her Arms” site.  I’ve seen this phrase all over the place.  I had no idea what it meant.  In fact, I thought it had something to do with “Twilight”.  It seemed like something Edward would say to Bella … “I love you SO much I’ll write LOVE on your arms!”  “I love YOU so much I’ll wear LOVE on my arms!”  *shudder*  So I didn’t really look into it.

This morning I followed my nose to the “TWLOHA” site.  The folks running this site seem like very nice people.  Here’s their mission statement:

“To Write Love on Her Arms is a non-profit movement dedicated to presenting hope and finding help for people struggling with depression, addiction, self-injury and suicide.  TWLOHA exists to encourage, inform, inspire and also to invest directly into treatment and recovery.”

Yes.  Very nice.  Pointless, but nice.

And yes, I really do know how that sounds.  So let me clarify – it isn’t pointless to those who wish to offer support.  I’m thrilled they are investing in treatment and recovery.  It’s desperately needed.  But let’s be very specific about what this, and movements like it are.  TWLOHA does not support people who suffer from “depression, addiction, self-injury and suicide.”

TWLOHATWLOHA is a support group for supporters.  It’s a place where well-meaning people can join together with like-minded souls to talk about how they want to help people.  And I’m all for that.  Those who suffer benefit from talking to their own kind.  People offering support suffer.   Their job is thankless and so difficult it seems next to impossible.  Talking to other care-givers will help them.

But does it help those who are diagnosed with Depression?  No.  At least, not initially.  Would it help me now?  Over 10 years into my recovery?  Maybe.  I’m seeing a lot of blog posts from people who, like me, used to cut.  I can see the benefit in that case, sharing your stories with others to help them learn, to help you grow.  But for someone actually going through it right now?  No.

Let’s look at the mission statement to see why.  They’re a movement “dedicated to presenting hope…”

STOP.  Right there.  That’s far enough.  If you’re “presenting hope” to care-givers, this is a good thing.  If you’re “presenting hope” to the diagnosed, it’s almost insulting.  I wrote about this before in a larger post.

“Under normal circumstances human beings occasionally suffer from “depression”.  Lower-case “d”.  They’ll get the blues or mope around for no good reason.  They feel sorry for themselves.  They have a bad day now and again. A person with depression can be cheered up by things around them.  If you tell them to “look on the bright side” it makes sense, even if they’re bummed out.

“Depression” (capital “D”), one half of bipolar,  is a non-negotiable chemical imbalance in the brain. It is not a “case of the blues”.  It isn’t a lack of perspective.  Rather, it is the absence of hope.  Depression is physically painful.  The only thing I’ve experienced similar in feel is a car accident.  It causes the entire body to ache, even blinking hurts.  Also, I found that everything seemed heavier, and in some cases I couldn’t lift everyday objects.  Even my own limbs were sometimes too heavy to manage.  Consequences be damned, there was no reason on earth to move, except to try to end the pain.”

The root cause of mental illness is a physical impairment, not a character flaw.

This cheerfully optimistic, determined, extremely well-intended group goes on to say:

“We live in a difficult world, a broken world. My friend Byron is very smart – he says that life is hard for most people most of the time. We believe that everyone can relate to pain, that all of us live with questions, and all of us get stuck in moments. You need to know that you’re not alone in the places you feel stuck.

We all wake to the human condition. We wake to mystery and beauty but also to tragedy and loss. Millions of people live with problems of pain. Millions of homes are filled with questions – moments and seasons and cycles that come as thieves and aim to stay. We know that pain is very real. It is our privilege to suggest that hope is real, and that help is real.

You need to know that rescue is possible, that freedom is possible, that God is still in the business of redemption…”

screamMust.  Control.  Primal.  Scream.

Note to readers – I just deleted my first three attempted responses to this “Vision Statement”.  It has taken me over an hour to write all this.  Please understand I’m REALLY trying here.

Maybe expanding on that idea will help people who are not diagnosed understand why statements like this are so infuriating.

roaring_lionMy hands are shaking.  My heart is pounding.  I feel a tightness in my chest and a sincere desire to physically lash out.  The Beast is clawing inside me, raging for a chance to speak, to howl until it IS heard.  I’m controlling it by an act of will, but I am grateful, so grateful, that my partner isn’t awake yet.  Because of the destruction of our apartment (thank you SO much HOA… that’s another blog post…) her desk is only inches from mine.  She would be very upset to see me so agitated.

But now The Beast within is calming.  He’ll have his chance to speak.  My heart is slowing, though my chest still aches from the attempt.  I don’t need to take my blood pressure, I know it’s still through the roof.  But it’s getting better.

Ok, folks.  You may not have understood that reaction, but rest assured it’s very real.  I will do my best to explain.

hulkThe fury within me is the definition of Bipolar.  When the fury lashes out I’m in manic phase, as I am right now.  When it turns inward, that’s Depression.  But, like the Hulk, the fury is always present.  And the best way to trigger it is to attempt to invalidate my struggle.  Especially by telling me that if I just see things from a different angle I’ll suddenly cheer up and understand the light at the end of the tunnel.

TWLOHA is the finest example of that I’ve seen in quite a while.

“You were created to love and be loved.”  Thank you.  I know that, you really don’t need to tell me.

“You were meant to live life in relationship with other people, to know and be known.”  I know that too.  The fact that you put this in a vision statement tells me that you do not understand why a person suffering from Depression pulls away from the world.  If only you remind me that I should be in a relationship with others, I’ll suddenly say “ooooh, wow, I never thought of it like that before!”  Really.  No.  People with Depression pull away from the world because of the cataclysmic lack of understanding, combined with well-meaning people who try to offer us a “perspective check”.

“You need to know that your life matters”.  My eyebrow is starting to twitch.

“We live in a difficult world, a broken world.”  And?

“My friend Byron is very smart – he says that life is hard for most people most of the time.”  Good for Byron.  If I meet him I’ll give him a gold star and a cookie.

“We believe that everyone can relate to pain, that all of us live with questions, and all of us get stuck in moments.”  That’s nice.  In return, I believe that if you have never suffered from Depression (as opposed to “depression”) you can not relate to the pain I feel, as it is utterly irrational.  It is based on a chemical imbalance in the brain that does not allow me to operate as a typical human being would.  I do not suffer from a lack of perspective.  To say that Depression is similar to being “stuck in a moment” is like telling a blind person that they just need a fresh perspective and they’ll suddenly see the colors of the rainbow.

(I’ll skip the next paragraph – I’m sure you get it by now)

“You need to know that rescue is possible, that freedom is possible, that God is still in the business of redemption.”

WHAT?

sugar-addicts-total-recovery-program-kathleen-desmaisons-paperback-cover-artThis is NOT a 12-step program.  If I just cast my doubts aside, my worries to the wind and believe in a power greater than my own, I’ll somehow, suddenly understand hope?  That doesn’t even work for addicts, as most of them are also caused by a chemical imbalance – EXACTLY like mental illness.  Look up “sugar addiction“.  You’ll see what I mean.

Please try to understand.  Please.  I know you’re trying hard, members of TWLOHA.  I really appreciate the effort.  But… there’s a commercial out there that has a person stranded on the side of the road.  They call for a tow truck, a pizza delivery guy shows up.  Please try to understand I do not need pizza.  You can bake the most delicious pies all day long.  They’re lovely.  They’re yummy.  But I’ve still got a flat tire.  No matter how fabulous your pie is, what I really need is a mechanic.

I do not need a “Perspective check”.  I need a doctor.

Get it?

lovePS – My partner woke up as I was editing this post.  She asked what was going on.  When she saw me turning colors she patiently sat down and listened to me read the entire post aloud.  Then she nodded and offered thoughtful suggestions about how I could make it better.  That’s how you do it folks.  That’s how you make it through the day.  She is love.   No writing of arms required.

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Oh, those wacky bipolar performances!

In a recent article I addressed the challenges of “coming out” in public.  Do you tell people you’re mentally ill and face the resulting backlash?  Or do you pretend that everything is normal while still displaying symptoms?  Neither seem like a good option, and there’s no third choice.  I’ve also mentioned how much I admire Carrie Fisher (as well as many others who speak in public about mental illness).  Her straightforward attitude regarding her struggles gives me a great deal of courage.

carrie fisherMs. Fisher was briefly hospitalized recently after an incident on a cruise ship.  According to reports she appeared drunk, her behavior erratic.  Was she drunk?  Maybe.  Or she might have been on one of any number of mood-altering drugs commonly prescribed to bipolar patients.   Look at these headlines:

Carrie Fisher Heads To The Hospital After Her Wacky Bipolar Performance On A Cruise Ship! (Perez Hilton)

Carrie Fisher briefly hospitalized after bipolar episode during bizarre performance on cruise ship (NY Daily News)

Vs.

Carrie Fisher briefly hospitalized (CBS News)

Carrie Fisher discharged from hospital after bipolar episode on cruise ship (Toronto Sun)

Arg.

I can not speak for Carrie Fisher.  But I have taken a drink more than once. I don’t like alcohol and I hardly ever drink socially.  But when the anxiety of a manic phase becomes too much, when the buzzing gets too bad, I have few options.  Narcotics?  Sure.  I have bottles full of the things, a different color for every occasion.  Problem is, one pill can last for hours, sometimes days, long after the symptoms have worn off.  In almost all cases the side effects from a tranquilizer are much worse than the symptoms of mania.

bacardiberry5 Alternative?  A shot of Bacardi.  I was doing that LONG before I was diagnosed – all through college in fact.  For a while I was worried about becoming an alcoholic.  I used to just grab a fifth and down a few swigs.  Yeah, Janice Joplin lite.  The effect is nearly immediate, it doesn’t last nearly as long as pills, and I can FUNCTION.  The buzzing emotions calm down.  Now that they’ve started flavoring the rums, it almost tastes good.  Sort of.

Of course, there are a few downsides to this.  Empty calories for a start.  During my heavy drinking period I pudged out quite a bit.  Not pretty.  And, of course, alcohol is addictive.  Once you reach the point of addiction any benefit a person may receive from doing a shot is negated.  Now you have two problems – you’re still bipolar and now you’re an alcoholic.  Joy.

There’s also a third downside which only becomes apparent as the cycle progresses.  I only need to drink when I’m manic.  I get the jitters, I start to spaz, I need to calm down  fast.  But when the mania phases into depression… then what?  I start to feel awful, I reach for a shot.  And I immediately feel worse.  What makes the manic phase bearable makes the depressive phase a living hell.  But it’s not always obvious when the phases have switched, except in retrospect.

 
we Carrie Fisher, wherever you are this morning, I salute you.  As always you give me courage.  Courage to write, to get the word out, to continue to champion the cause of those who struggle with mental illness.  It’s not a sexy fight, but hey – someone has to do it.

“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.

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.

We are not alone

PrincessAt age 11 I was hooked on classics.  No, not Bach.   Asimov.  Heinlein.  Bradbury.  I was heavy into Science Fiction then as now.  May 25th, 1977 was the day everything changed.  That’s when Star Wars came out.  I pity anyone who hasn’t seen it in a theater.  That first scene, when the Star Destroyer goes overhead, the audience looked up.  The damn thing was so big, the shot so amazing, so convincing, we were sure it was only a few feet over our head.  3P0 walked, talked and worried.  And a lovely princess stood up to a black beast and made us all cheer.  NOTHING would ever break this girl.

CarrieI’ve had an intellectual crush on Carrie Fisher for 36 years.  When I heard she was Bipolar I was horrified.  She was diagnosed in 1980, but didn’t accept the diagnosis until 1985. There she was, bright eyed, that lovely voice rolling with laughter with an undercurrent of steel that helped the Rebels win, telling the entire world not only that she had a severe mental illness, but she was fine with it.  It’s one of the things that makes her who she is.  She’s not blowing it off, but she’s dealing.  Not only that, but she’s being honored for that fight.

Princess Leia and I fight the same battle.  Every single freaking day.  Way to go girl!  She gives me hope.   (Notice how I avoided “A New Hope”?  I hope you appreciate the self discipline that took.)

Brandon MarshallIs sports more your thing?  Let’s talk football, and another inspiration of mine.  Brandon Marshall, the former Denver Bronco. You might think he’s an odd choice, as he was essentially run out of town.  Drafted in 2006, he was charged with misdemeanor battery in 2008 (jury found him not guilty) and arrested for disorderly conduct in 2009 (charges dropped).  When he played for the Dolphins he was stabbed in the stomach by his wife.  The Dolphins traded him to the Bears after he was accused of hitting a woman in the eye.  Why does he inspire me?

Brandon Marshall suffers from Borderline Personality Disorder, which is another issue I suffer from as well.  And let me tell you, I HATE that name.  You can’t imagine how many times I’ve been asked if I’m “borderline crazy” and when I’ll know for sure, one way or the other.  Ha. Ha.  It is to laugh.  BPD may have the silliest name of any mental illness out there, but it is a very serious disease.  It’s defined by black-and-white thinking.  You love someone one day, they’re your bitter enemy the next.  There is NO gray area whatsoever.  It leads to very intense, highly unstable relationships resulting in, among other things, a lot of job changes if you’re not diagnosed.

But Brandon Marshall IS diagnosed.  It took a while, and 2 jobs, but he got there.  He’s even married still.  Considering the strain BPD puts on all relationships, that’s a miracle.  *applause*  He told the press in 2011 not only that he has it, but that he hopes to spread awareness about BPD by becoming a spokesperson for the illness.

Royce whiteFootball isn’t your thing?  How about basketball?  Another name has been added to the list of heroes, and I’m so proud of this young man.  Royce White, rookie player for the Houston Rockets.  Talk about gutsy!!  He didn’t just tell the public he’s mentally ill (he suffers from an Anxiety Disorder).  He told the Rockets, with quiet dignity, that a mental illness is exactly as legitimate as a physical one.  He has special needs, they need to be addressed.  The Rockets disagreed, a labor dispute ensued, he was suspended for 3 weeks.  He held his ground.  On January 26th 2013 Royce White was reinstated, the two having come to a “mutual agreement”.  He put his entire career on the line to prove that mental illnesses are legitimate, and won.

weWOW!!

Princess Leia can handle this.  Brandon Marshall is dealing with it.  Royce White just fought so people after him might be taken seriously.  I can do this.  So can you.  We’re not alone out there.

What is “Bipolar”?

Disclaimer:  I am NOT a doctor. Nothing in this journal should be considered medical advice.  It is my opinion alone.

***

A man I know once described his emotions, with a smile, as being “bipolar”.  Why?  He was having a hard time making up his mind.  A young lady I know once told me she was bipolar. Some days she really likes something, like cupcakes, and other days she can’t stand them.  Thank you for trying.  But that’s not bipolar.

I was diagnosed in 2001.  I had to ask the doctor what he was talking about.  After a good bit of jargon, he finally leaned forward.  “Ever hear “Manic Depressive?”  I had.  “Well, it’s that, only we don’t call it that anymore.  Now it’s Bipolar.”

I’ve been bipolar nearly 50 years.  If I had such a hard time understanding it, I’m not surprised how often it’s misunderstood by the public.  Initially I received one of two reactions if I told someone: syrupy encouragement or defensive hostility.  The encouraging ones told me to “cheer up, it’s not really that bad!” (with a hug). Those in the hostile camp would tell me (in a stern voice) to “get over yourself, everyone has a bad day now and then.”  Thank you for trying.  But that’s not bipolar either.

We’ve come a long way in a short time.  The word “bipolar” is no longer foreign. In fact, today it’s so common it’s used in casual conversation.  For example, the Salt Lake Tribune ran this article last Wednesday:

Kirby: Deciphering America’s bipolar position on guns

Students can be suspended from school for making “pow” motions, but a guy can walk through JC Penny with a rifle because he “supports the 2nd Amendment”.  Both show extremist thinking, which is the only real relation a social contradiction has to bipolar disorder.  It’s wonderful that the public has (for the most part) accepted that it’s real, enough so that it can be used in a headline.  It would be even better if people knew what they were talking about.

According to the American Psychological Association, bipolar disorder is “a serious mental illness in which common emotions become intensely and often unpredictably magnified.  Individuals with bipolar disorder can quickly swing from extremes of happiness, energy and clarity to sadness, fatigue and confusion.  These shifts can be so devastating that individuals may choose suicide.” (Bipolar Disorder, n/d)

This is complicated.  Worse, most people think they understand what bipolar is, even though their understanding is incomplete or flat out wrong.  I’ll try to break it down so it makes sense.

Under normal circumstances human beings occasionally suffer from “depression”.  Lower-case “d”.  They’ll get the blues or mope around for no good reason.  They feel sorry for themselves.  They have a bad day now and again. A person with depression can be cheered up by things around them.  If you tell them to “look on the bright side” it makes sense, even if they’re bummed out.

Capital “D” Depression is a clinical diagnosis.  It’s the type of diagnosis a guy with an MD must make, not a therapist.  It can work in conjunction with little “d” depression, but it’s not caused by having a bad day.

Capital “D” Depression is caused by a chemical malfunction in the body.  Something isn’t firing right in the brain, which does not allow a chemical to reach its destination.  So a person literally, PHYSICALLY, can not experience happiness.  It has nothing to do with a lack of perspective and will not change, even if you say “look on the bright side” 1,000 times.  And it is physically painful.  The only thing I’ve experienced similar in feel is a car accident.  It causes the entire body to ache, even blinking hurts.  Also, I found that everything seemed heavier, and in some cases I couldn’t lift everyday objects.  Even my own limbs were sometimes too heavy to manage.  Consequences be damned, there was no reason on earth to move, except to try to end the pain.

Mania is the flip side.  When most people hear the surface description of mania, they think it’s great!  Wow, tons of energy!  Loads of enthusiasm!  Start a business!  Enroll in classes!  Clean the house!  Shop for hours!!  WHEE!

While that may be what it seems like on the outside, here’s what it seemed like, for me, on the inside.  I’d start a project I couldn’t hope to finish.  I’d take on an obligation that I could not possibly follow through on.  And don’t try to talk me out of it.  It’s likely my enthusiasm would flash into towering anger.  I’d target anything that moved until you got out of my way, often to the point of physical violence.  Begin again.  Register for classes!  Run for office! Organize a committee!  Arrange the entire kitchen alphabetically!  Run up those credit cards!

I could also start whirlwind relationships.  When I got engaged I took extreme measures to break it off, terrified he’d actually expect me to go through with it.  When I got married it lasted less than 2 years (though it seemed like a fantastic idea when I said “yes”.)

As the cycle progressed and lucidity temporarily returned, I somehow had to explain everything that just happened.  Either I couldn’t get out of bed (sometimes for days) and so I had lost my job (again) or flunked out of school (again).  Or I had promised to lead a cheerleading clinic in Chinese, but I never showed up.  Of course, as I was undiagnosed, I couldn’t explain any of it.  That was the worst part.  There was no rational explanation for my behavior at all, and it never crossed my mind that I was mentally ill.  Typically, the person suffering from the illness is the very last to know (if they ever do).  So my “lucid” phase often flashed between defensive anger and crushing guilt.  This is one of many reasons those who suffer from bipolar disorder have so few long-term friends, or have been abandoned by their family.  How much can a rational person be expected to take?

Bipolar is a cycle, and everyone is different in the duration of that cycle.  When I was diagnosed I was told Bipolar lasts 2 years, start to finish, more or less, with each phase lasting around six months.  The first phase is six months of Depression, phasing upward into lucidity and self-awareness for six months.  This phases into the Mania for six months, which then phases down into another period of lucidity.  Round this out by beginning a new phase of Depression, and repeat.  Of course, new study has suggests every cycle is individual, and can change without warning.  The only thing that remains consistent are the mood swings: violent, unpredictable, inexplicable.

For me, Bipolar is a combination of nearly lethal anger and hatred.  The difference in the two is direction.  Depression turns the hatred in.  At its worst I could easily kill myself.  Mania travels outward.  At its worst I could easily kill others.

I was 35 when I was diagnosed.  A person can do a great deal of damage in 35 years.  I’m lucky I lived through it.  If you have it, or know someone who does, I hope this helps.

Bipolar disorder (n/d) Retrieved from http://www.apa.org/topics/bipolar/index.aspx

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

The Weeping Woman

I met another woman weeping on the street last night.  The last one was sitting at the bus stop, and she just wanted a “time out”.  This one was from that same complex, as it turns out.  Spyglass Hill.  I remember I nearly rented an apartment there years ago.  I decided against it and I’m SO glad.  It seems east Denver’s pit of despair.

It was about 2:30 am or so, just after “last call” in retrospect.  This girl was wandering down Monaco, barefoot with a light sweater on, huddled in on herself and weeping.  If you saw her, would you have helped her?  Lawyers, you know?  You don’t know what’s going on.  Best not to get involved.  I don’t understand people like that.

In any event I started talking to her quietly while my lovely partner took the dog back home and went to fetch socks.  I always carry a variety of street-legal weapons with me, and considering my height, weight, and batshit status I don’t fear many things on the street, regardless of the hour.  So when her boyfriend buzzed us a few times in his Bronco it didn’t bother me, even when she freaked out.  After some conversation we decided to relocate to our stairwell so we could sit and talk where he couldn’t see us, but without freaking her further by bringing her inside a strange house.

She’s very pretty, willow thin with long flowing black hair.  She told me that mom’s a full Ute while dad’s Hispanic.  She has the best of both, apparently.  She looks 18 but said she’s 24 and mother of two.  Sadly, my bullshit meter redlined within minutes of talking to her.  Nothing the girl said made sense.  She gave me three different names within five minutes (Crystal, Lisa and Melissa) and was in a significantly altered state.  That she was drunk was obvious, but there was something working underneath that was hard to pinpoint.  In any event by the time I got a coat around her Steph had once again ducked inside to provide water, Kleenex and a scarf.

Crystal Lisa Melissa was very unwilling to go home, or to contact anyone she knew.  Given her state it was hard to figure out if she was frightened or embarrassed.  She claimed fear, but it didn’t ring true.  I tried to encourage her to head to a shelter at least for the night.  But she declined in a vague way, and spoke of her mother, her aunt and more of her boyfriend, without being able to remember where any of them lived, unable to recall their phone numbers, and having no real desire to speak to any of them.  Truly a lost soul.

By the time she sobered enough to ask to use the bathroom I was weighing my options, most of which boiled down to calling the cops.  She couldn’t stay with us.  It wasn’t a question of being unwilling to shelter a stranger.  If I thought she was telling the truth I would have helped more.   As it was she stayed in my bathroom for a few minutes and I was compelled to check the medicine cabinet and my jewelry box.  She didn’t take anything, but she did try to put on my sweat pants as a jacket.

When I helped her back into her own coat it must have weighed about 10 pounds.  I asked why, and she produced two river rocks from her pocket, one the size of a cantaloupe and the other about grapefruit sized.  She said she wanted a rock to speak to her mother – she could “hear” rocks, but these weren’t the right ones.  She was very sad she couldn’t find the right rocks.

By then I figured that we’re not dealing with a drunk, though she was drunk obviously.  A drunk Ute is a very bad thing, but her boyfriend later confirmed my suspicions.  She’s severely bipolar and a habitually self-medicates.  She’s also, I’m guessing, mildly psychic and can pick up on vibes in rocks.  Most of us seek out special crystals but if you’re just starting out a river rock will do.  She drinks to put the Beast to sleep, which works until it wakes up again.  Meanwhile, being Native American, she’s also now a bona fide alcoholic.  Oh, joy.  The “undercurrent” I was picking up, which at first I thought was a weird drug, was the Beast, watching.  Waking up.  Assessing the situation.

I pulled one of my old coats out of the closet.  I was going to donate it to Coats for Colorado but this seemed a much better use.  Steph grabbed an old pair of shoes and we got her dressed for the cold, and then took her home to the “abusive boyfriend”, who pulled in almost immediately after us.  She had wandered upstairs to see if she could get back in without keys, so I took the opportunity to speak to him.  No monster this, just a very tired, stressed out and worried young man, with deep black pools for eyes.  He had one of her two kids in the backseat.  Not the “dead beat” she described, he was her best friend from high school and had been dealing with the Beast for the last 6 years.  He loves her, but not as a boyfriend, and he wasn’t the father of the kids.  I tried to be calm and supportive while offering what advice I could about dealing with bipolar, but I really had nothing to offer.  This guy has been in the trenches for years.  He knows everything I do, and he’s at the end of his rope.  She’s been committed twice already, but the moment she gets out she goes off meds and back to alcohol.

I looked into his eyes and saw the same conclusion I had already come to.  Unless she saves herself she’s going to die.  And she’s not going to save herself.  At that point she came storming back out, and I saw that the Beast was fully awake and in control.  She was furious and defensive, seeing me talk to him.  I assured her that I wanted to make sure he wasn’t going to attack her (as she had said) before letting him go up.  Caught in the lie, the Beast lashed out.  She attacked him, and then snatched the keys out of the ignition before darting off again into the night.  While upstairs she had taken off my coat, and Steph’s shoes, and was once again in a light sweater and barefoot.  I let her go.

In retrospect it’s hard to say I made a difference.  Her problems are profound, and no amount of gentle speech and common sense will help her now.  It took me 10 years to tame my beast and that was with constant support.  With a limited support network, two kids and alcoholism in her hand, it’s hard to see how she’ll win this one.  She has my phone number and I won’t turn her away if she calls, but I won’t seek her out again either.

So here’s what I really took away from this.  My ex-husband and I wanted a family.  Had we gone down this path, my eldest would be about her age now.  Perhaps just a little younger, but not much.  She spoke constantly of her mother, who’s name is Lisa, and who was born in 1966.  Perhaps the universe wanted to show me what my own daughter would have become, had I been so foolish as to pass on my damaged genes to another.  I didn’t really need confirmation, but there it was anyway.  So really, I’m just sad and thoughtful today.  I can’t help her, him or them.  But I wish I could.

Today is my Birthday

A few years ago we were encouraged to keep a journal, under the assumption that 12 months later so many unexpected things would happen that the journal would offer powerful insight. 12 months after that challenge was issued, they were right. I was startled by the unexpected results, in that hardly anything happened that year of note. Of course… that was the last year I can say that about, but I digress.

At the moment I feel something similar. One of my primary and least likely goals was to survive 10 years after my diagnosis. Today is the anniversary of that 10th year. During the last decade I tried to imagine this day and always came up short. In many of my therapy sessions they’d ask “where do you see yourself in a week? A month? A year? 10 years?” I could never answer.

So here I sit, trying to somehow take an assessment of the last 10 years and what it all means. And I find that instead of a raucous celebration, I feel an odd sort of numbness. A bewildered sense of “now what”? I have climbed the mountain. What do I do next?

I suppose I should start with the obvious. My diagnosis is, specifically:

  • Premenstrual dysphoric disorder (PMDD) AKA “rapid cycle bipolar” (ok, I admit it. This is in ADDITION to the Bipolar I diagnosis, not instead of)
  • Borderline Personality Disorder
  • Prosopagnosia (face blind)
  • Anterograde amnesia
  • Degenerative Disc Disease in 5 disks
  • Possible stroke (undiagnosed)

Looking over this list, my knee-jerk reaction is to strongly advise anyone who enjoys good health to thank God every single day, and never take a moment of it for granted.

But what else?

I’m typing in the dark. The sun is setting but I haven’t opened the windows yet. Everything in this house is designed to combat heat and the Great Oppressor who delights in cooking us daily. Because of this, the only light source currently is the monitor. Looking down, I can see the scars that cover my arms in stark 3-D. The left arm is Much worse than the right, because I’m right handed. There’s a large round scar on the back of my left hand, and criss cross lines moving from wrists to elbow. The darkness does not reveal similar scars covering both legs, from knee to ankle. Most of these were inflicted in the first two years after the diagnosis, which means the freshest is 8 years old. Even still, they’re dramatic. Especially in this light.

Why the hell would anyone do that to themselves?

A mental illness acts on its own accord. Just as a tumor grows and gets larger without asking permission of the body it inhabits, so does a mental illness act without asking permission of the host. The best way to describe it is a parasite that occasionally takes control.

The Beast within makes a person numb, controls the exterior, including speech and motion. One way to bring myself, my lucid self, back to the forefront was by pain. If I could just FEEL something, my true self would react.

In this way, I fought for my life. I brought myself back. And then retreated. And brought myself back again. And on and on. It’s not the story of my life. It’s actually the story of my death. Whatever had been me died ten years ago today. The scars are her epitaph.

What came after? For a time there was the crucible of simple, pure madness. One that proves Nietzsche was right. After that was silence. A stillness of mind and body that, in retrospect, has more in common with death than life. Gestation, perhaps.

What do you think an infant experiences as it’s born? Discomfort certainly. The area is too small, and it can’t breathe. The lights are too bright, and it’s cold. There’s pain, and noise, and a desperate unhappiness that an uncongealed brain simply can’t take in. And so it wails, a piercing sound of confused betrayal.

That’s what happened when I woke up. It was sudden. It came with a question. “Wait, how can that be right? This doesn’t make sense, because …” This phrase ushered in everything I am now. It took maybe six years, and some part of me wonders if I shouldn’t be starting the first grade this September. In a certain way it would make sense.

Ten years. I have survived, and to what end? I used to think that Earth defined the pointless. That humans only existed to breed. A life, a death, the species propagates, and who cares? But now one thing I’ve come to understand is the journey. The part of this which can not be seen, unless gifted with a very special vision.

And that, at last, is the point. The answer to life, the universe and everything. The understanding of the journey, the paths that have been travelled, the promise of the destination, the lessons learned along the way.

Unless I had died, I would have no chance to live. August 17, 2001, was the best day of both my old and new life. It took ten years to understand that. But what is ten years, when on the path?