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January 3, 2014

Posted by Crazy Mermaid in mental illness.
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(from a blog posted by my friend Bowling Joe)

My friend Kathy Chiles and I go way back.  As teenagers we met on Maui, Hawaii as our respective fathers were part of a two-year construction project which imported a bunch of workers and their families from Washington State.  Being uprooted from a stable teenage life and tossed into a public high school on Maui at age thirteen in 1974 was one of the worst years of my life.

I’m guessing it wasn’t great for Kathy either, but it it’s hardly a blip on her life experience radar compared to what she and her family went through in recent years.  She believed with all of her heart and mind that she was a mermaid.  Not just any mermaid though.  A mermaid who bought luxury items her family couldn’t afford.  A mermaid who had the gift of ESP and was able to communicate with the likes of Bill and Melinda Gates, as well as the Dalai Lama.  Eventually she was involuntarily committed to a mental hospital, as things were on the verge of getting really, really bad.

She recently wrote an incredible and noteworthy book about her experiences, called Pangaea:  Confessions of an Erstwhile MermaidIt’s a fascinating read and has been a true learning experience for someone like me, whose knowledge of mental illness has been primarily driven by what I’ve seen on TV and in the movies.  (Spoiler alert:  it’s NOT at all like what you’ve seen on TV and in the movies).

Kathy’s book is available for download on Amazon or Nook. http://www.amazon.com/Pangaea-Confessions-Erstwhile-Kathy-Chiles-ebook/dp/B00BZZ8R18. Barnes & Noble noon: http://www.barnesandnoble.com/w/pangaea-kathy-chiles/1115285887?ean=2940016728599.
I recently asked her a few questions about her book and experiences.Spence JPG file for book cover  3 23 13

What motivated you to write this book?

The idea of writing my book came from my mom.  When I got out of the hospital and went to their house so they could “babysit” me while my husband was on a Boy Scout outing, I told both my parents some of the psychotic thoughts I was having.  She and Dad were initially afraid, and she suggested I write them down so I would remember them later. Then, later on, she complained that when I went into the hospital she looked for books and resources to get an understanding of what might lay ahead of them, but there was nothing out there.
 
The only book remotely close was An Unquiet Mind by Kay Redfield Jameson. But that book wasn’t really pertinent to my situation as she saw it.  So once my ability to read and write returned, she suggested I write something that would instruct people on what to expect when their loved one became mentally ill.  I did some research and learned that she was right.  There isn’t anything out there like what I was able to write.

You seem to have a crystal clear recollection of what took place on your journey.  Did you paraphrase your words on occasion or do you really have a brilliant sense of recalling situations?

Initially, my memory was so bad that I couldn’t figure out how I had ended up in the mental hospital in the first place. My brain simply had hidden the information about the zombies in the pool from me.  The zombies were, of course, what drove me to go to the hospital emergency room which led to my subsequent involuntary commitment. Once I was committed, the psychiatrist kept asking me who I had been helping to move before my commitment.  I couldn’t figure out what he was talking about. 

Once I began writing my thoughts and memories down, it was as if the blanket slowly lifted.  The more I wrote the more I remembered. It was therapy.  In the end, it was like sitting down in my living room and watching a movie and writing down what I saw. Easy as pie.  It was all crystal clear once the memory surfaced.  Then, at the hospital, I met so many interesting people that it was easy to remember them.  I have been told that having a psychotic break is like being on LSD, and I think this accounts for some of the clarity of memory. 

Mental illness is getting more mainstream press these days, probably due to many tragic occurrences involving weapons.  What are some things we can do as a society to help further enhance awareness of what mental illness really is and approach the level of attention that a disease such as breast cancer receives?

The problem with mental illness is that the tremendous stigma attached to having a mental illness keeps people from getting help.  Also, the nature of the illness itself precludes people from getting help, because one of the symptoms of the illness is a failure to understand that you are sick.  It’s called anosognosia. 

One of the other problems is that people’s civil rights get in the way of treatment.  There’s no way around the fact that involuntary commitment is the ultimate violation of civil rights.  The law makes it almost impossible to involuntarily commit people, and when they do they don’t keep them long enough for adequate treatment.  A hospital stay is driven by the number of beds available and the insurance of the person being committed.  Ideally, we would make it socially acceptable to seek treatment and get someone involuntarily committed and keep them long enough for their medication to fully take effect.  This means months of treatment rather than the two weeks currently in vogue. 

Had the stigma not been so great, I could have avoided a hospital stay.  When the voices took over my mind, I went to my physician and got a referral to a psychiatrist, but the voices convinced me it would ruin my life if I went.  They said my bosses would find out and fire me.  So I didn’t seek treatment and ended up hospitalized involuntarily.

But things are getting better as far as stigma goes, and people like Katherine Zeta Jones are proof of that.  Her voluntary commitment to a mental hospital hasn’t seemed to affect her career.  Her brave action might help others seek the help they need.

What would you say are the most common misconceptions people might have about mental illness?

In terms of involuntary commitment or even voluntary commitment, people have the impression that once you’re released you’re “fixed”.  But it takes months for the medication to build up enough in your system to get the symptoms under control.  My family is surprised that it took me so long to get rid of the voices.  And in reality, I still hear them when I get under stress.  So the thought that I will eventually be “disease free” is a misnomer. 

How have your relationships with family and friends changed since your diagnosis and subsequent stabilization?

One of the things my medication does is change my personality.  I don’t have the ups and downs that normal people have.  I am stuck in “neutral”, neither high nor low.  And being stuck in neutral means that my personality changed.  Compared to before, I am now boring and predictable.

Additionally, I have changed my personality as a result of my illness. I was a risk-taker and a workaholic before I became ill.  Now I am neither.  I can’t be a risk-taker any more, since with risk comes stress. Stress brings back the voices. The voices don’t bother me, but they bother the people around me. My psychiatrist is especially bothered by them, but I refuse to take so much medication to eliminate them that I am comatose, which is what it would take.

Changing my behavior and my occupation also changed my interests, and with that change came new friends.  I have mostly dropped my old friends, having nothing in common with them except memories.  I don’t face the same daily challenges I did before I was ill, so I can’t relate to my old friends any more.

Having very few challenges in my life (to avoid stress) also changes my personality.  I have been told I was a steamroller/bitch before I became ill, and that I am much more pleasant to be around nowadays. That is all to the good.

I have met many new friends through my association with NAMI (National Alliance on Mental Illness), an organization I learned about in the mental hospital.  I can relate to these people better than “normal” people, since we share similar experiences.  Talking with someone about the challenges of hearing voices is comforting.  I feel I’m not alone.  And friends and family members whose loved ones are mentally ill have been especially kind to me.

Do you have any challenging side effects as a result of the medications you use?

When I first left the hospital, I couldn’t read or write.  My balance was off, my hands shook and I couldn’t drive because I couldn’t get up to the speed limit or determine the distance between my car and the car in front of me.  These side effects have mostly resolved, and I am left with short term and long term memory problems and sleep problems.  Sleep is critical to me because without proper sleep I will become psychotic again according to my psychiatrist.  The biggest side effect I have is that I can’t retain information or understand information like I did before I became ill.  I prided myself on my high IQ before, but I have lost that. Remember the book “Flowers for Algernon“?  That’s kind of what I feel like.  It takes me a long time to understand concepts now, and in some cases I simply give up.
 
According to my psychiatrist, that could be due to my medication or the changes in my brain chemistry caused by the mental illness. Either way, it’s not going to resolve itself.  I’m stuck this way.  It was initially depressing, but the further I get from my pre-high IQ self, the more my memory fades of what it used to be like to instantly grasp and retain information and process multiple thoughts simultaneously.  Those things made me very good at my job, and i was paid well for my skill.  It has been quite an adjustment to get used to my “new normal”.   If I could return to my old life, I would in a heartbeat.  But that world is closed to me now.

Are you involved with any organizations which promote education, funding or treatment or mental illness?

My family and I first learned about NAMI (National Alliance on Mental Illness) when I was discharged from the mental hospital.  They recommended I attend the weekly group therapy meetings (called Connections) held by NAMI.  I went to them, and found them important in my recovery.  Relating to people with similar problems helps. Sometimes I learn about successful solutions from someone who went through what I went through.  It’s amazing how many people hear voices, although the term “hearing voices” has many different variations.  It’s fascinating to learn about other people successfully (or not) meeting the challenges of living with a mental illness.

I now co-facilitate a Connections group in Everett, WA.  I also speak to people about what it’s like to live with a mental illness through a program called In Our Own Voice.  Additionally, once a year NAMI meets with police officers and educates them on how to handle mentally ill people they run into during the course of their work.  This is called CIT (Crisis Intervention Training) and is designed to keep police officers from accidentally killing people in the throes of a psychotic break as well as to keep mentally ill people out of prison or jail when possible.

We also go to Olympia, WA during Martin Luther King Jr’s birthday to lobby legislators on behalf of mental illness issues. NAMI’s purpose is to make the world a better place for those living with a mental illness and their friends and loved ones.

One of the best examples of what NAMI accomplished is the new “parity” law, which says that insurance companies who pay for regular hospital stays must pay for mental hospital stays to that same degree, Also, Washington State is making it easier to involuntarily commit people by allowing the Designated Mental Health Professionals (who assess people for involuntary commitment) to gather information from friends and loved ones and other interested parties of those being assessed.  Previously none of the bizarre behavior witnessed by others could be taken into account for assessment purposes. 

Also, a certain percentage of taxes must go towards mental illness, and that money is spent on mental health issues.  This is resulting in things like Mental Health Court and Triage Facilities (places to handle the mentally ill without entering the criminal system).  There are more beds being built right now in King and Snohomish Counties.  None of these things would have happened without NAMI. 

Comments»

1. Lisa Utter - May 1, 2014

Good Interview – Helpful information about the range of experiences and why support groups are helpful.


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