Addressing Mental Illness (including Eating Disorders which are brain disorders) in Tucson - what needs to change

I was published today.  Not a momentous occasion justifying champagne or anything like that since the item was a Letter to the Editor of the local paper.  But exciting just the same because I felt strongly about an item and was moved (literally) to go to my computer immediately and write a response to an editorial that announced an exciting event titled,  Time Has Come for Complete Talk on Mental Illness.

The event is a forum to specifically discuss "A Delicate Balance: Creating a better, post-January 8 system to protect the public and help the mentally ill" and is scheduled to be held on the afternoon of April 27 and sponsored by the Arizona Daily Star (our newspaper) with the Schorr Family.  The keynote speaker will be Dr. Thomas Insel who is the director of the National Institute of Mental Health.  The goal is to talk about serious crime and mental illness but beyond that, and an issue near and dear to my heart, is a discussion of "...whether or not Tucson has the tools, resources and system to help the seriously mentall ill and are they adequate.  If not, what changes are needed?"

Okay, let's go back a bit.  The forum is going to be held on the afternoon of a weekday. 

The more of the editorial I read, the more excited and at the same time dismayed I became because an hour will be spent following the panel discussion for Q&A by the public.  And that seemed untenable to me given the time of day this will be held.  So I wrote a letter.  (Scroll down until you see a letter about a forum.)

My concern is that few people who are truly affected by the tools, resources and system (or actually the paucity of the same) would be able to attend since they'll undoubtedly be working to try to make ends meet.

And, their voices need to be heard.

Why do I know this?  Because I attended a wonderful NAMI Family to Family educational series four years ago and learned so much not only about mental illness/brain disorders but also what to do and how to access the tools, resources and system here.  The knowledge I gained was amazing and the frustration I heard from other parents who attended was amazing, too.  And, I know not too much has changed.  If anything, because of the State of Arizona cutbacks, the situation is even worse because many people are now taking generics of medications that are critical for their state of mental health.  Often, these generics aren't the same.  I learned this, too, because my doctor explained that the drug companies that make the generics have the leeway of being anywhere between 85 percent and 125 percent of accuracy in the amount of the drug needed per pill.  Funding has been cut to the agencies that provide services, as well.

The above was one reason.  Reason two occurred later that year when of necessity I began to live in my car (so it seemed) for hours each day taking a person to therapy sessions, to meetings with a psychiatrist, to group sessions, to medical doctor appointment, to labs .... etc.  A chunk of many days was also spent in the waiting room of one of the mental health providers here learning, while I waited, about others' experiences.  There were times when I could have cried.  So many times, people would come to the facility having had to take at least two buses to get there, only to arrive later than their appointment was scheduled and told to reschedule.  Family members and/or friends would take precious time off to get their family member to the facility to avoid missing an appointment.  Others, because of their mental illness, would become confused and lacking an advocate would forget what it was they were to do next or forgot to have their prescription renewed and had to wait for an appointment to get more.  Sometimes they need to wait until the medication is approved by the carrier.  What then?  What about withdrawal symptoms from missed doses?  Some people who came in were belligerent and upset others who were waiting their turn.  I witnessed so much.

I also lived the frustration and sadness of trying to help navigate the system only to see someone I love fall through the cracks and almost die -- at least four times -- because no one was keeping tabs or because eating disorders are still totally misunderstood by many or because I did not have the right to learn of missed appointments (HIPAA) and no one from the agency followed up.

Thanks to my NAMI class I learned who to call and where to go.  I was present at meetings whenever I could be and was allowed to be and took voluminous notes.  I still am and still do.  I worry about those who do not have advocates.  I wonder about those who show up at emergency rooms and are thrown out because they are disruptive when in fact they desperately need help (I know this happens; I saw it happen).  I know there are hospitals here that simply do not understand eating disorders -- for you parents, can you imagine sitting in a locked down area in the ER and having a doctor ask a person with an ED about their "regularity", hearing them say they are constipated, and then hearing the doctor offer a laxative!!!??  or watching as nurses administer a large dose of a medication that was contraindicated only to send a person into an extreme panic attack that culminated in an escape from the ER with an IV still in the arm?  Can you imagine sleeping on the floor overnight of a section of the ER in order to ensure that your loved one will be seen by a doctor and will remain there long enough to be evaluated?  Without resorting to Title 36 procedures, I did that several times until I realized I'd run out of options and the doctors on staff just didn't "get it".

Can you imagine finally resorting to Title 36 only to be told the person, whose weight was incredibly in the danger zone, was not a danger to themselves so the case was dismissed?  and then to come upon the results of a desperate act that you knew was coming?

Imagine needing to call a lead person of the oversight organization personally to intervene and then finally obtain hospitalization only to experience the horror of learning they were treated incorrectly to the possible point of compete disability?  I could go on and on.  So much needs to change.

So, going back to why I wrote the letter, again a discussion about change MUST include the voices of the families who have experienced situations like this countless times for serious mental illnesses ranging from OCD to schizophrenia to depression to borderline personality disorder (a misnomer) to eating disorders. 

I know other families have similar stories and they need to be heard so those who are leading the forum discussion can get a better idea of what is lacking here.   Transportation needs to be part of the discussion, too, for I wonder just how many people can get to the forum anyway either because they cannot afford the fare or they cannot get home because of bus service cutbacks to their area or not even having bus service and they live withing the city limits! [and one of the candidates for Mayor wants to cut back city subsidization]

I'm not sorry about this rant.  It's been a long time coming.  What I am sorry about is that Tucson does not have enough tools, resources and services.

I know we can do better.

I know we can do better because there is one hospital here that stepped up to the situation and worked to understand what was needed.  The staff was wonderful.  There is a mental health provider team in action here that has gone to extraordinary lengths to understand eating disorders and to provide the best possible opportunities for recovery although residential treatment is unavailable through the system.  To be fair, I should note that residential treatment for adults and even minors is not covered by many, many insurance companies and states nationwide.  This needs to change, too.  There is an Eating Disorder Coalition working in Washington, DC, to effect that change.  NAMI is very active, as well, to obtain parity with coverage of other illnesses.

I know people care.  I know they are stretched.  I know they need help and ideas and solutions.  We all do.

If this hospital and this team can learn and change, so can others.  But, it takes resources.  It takes a forum during which a conversation can occur and other conversations follow to address what needs to be done.  These discussions need people who understand, who are in the trenches both in services or in experience.

We as a community could start by advocating for the publication of PSA's in the paper similar to the quarter-page advertisement I accidentally came upon in the Orem, Utah Daily Herald (in the lifestyle section -- a suggestion coming in a moment) earlier this year placed by the Utah County chapter of the National Alliance on Mental Illness.


The item first described what NAMI is and then listed the "FREE programs that NAMI, UTAH COUNTY runs.  I'll list their offerings in a moment.  I know that NAMI offers several things here, too, but not all free.  I believe a similar advertisement needs to appear monthly in all the sections of whatever publications we have here in Tucson, including for example the Arizona Daily Star, the Tucson Weekly, and Inside Tucson Business.  Mental illness is far more common than many realize and eating disorders which are brain disorders kill more people than any other mental illness.

Here's what's offered by NAMI and advertised in Utah County, Utah:
Family-to-Family: This is a 12-week class for family members who have a loved one with a mental illness.  All of these classes are taught by family members who have a loved one with mental illness.  For information on this class and to sign up, please call [name and number].
Bridges:  This is a 10-weeek class for individuals with mental illness.  All of these classes are taught by individuals who have mental illness and are in recovery.  For information on this class and to sign up please call [name and number].
Basics:  This is a 6-week class for parents of children ages 0-18 years who have mental illness.  All of these classses are taught by parents with children with mental illness.  For more information call....
IOOV:  In our own voice is a presentation where 2 guest speakers share their stories on living with a mental illness.  To find out more about thi sprogram or to schedule a presentation, call......
Support Group and Guest Speakers:  We have support group meetings on the 2nd and 4th Tuesdays of every month from 7-9 pm  The guest speakers fall on the 2nd Tuesday of each month and speak from 7-8 p.m.  All support group meetings are for both the individual with mental illness and their loved ones or anyone who is interested in learning more about NAMI.  If you have any questions, please call....
Family Connections is a 12-week research-based family program.  It was specifically designed to meet the needs of family members who have a relative with borderline personality disorder (BPD), or symptoms of the disorder.  For more information contact bpdutahcount@gmail.com

The local NAMI chapter here in Tucson provides similar offerings.  I think it would be great if the local newspapers would advertise NAMI's offerings frequently!

As an important postscript and indicative of the urgency of discussions and education, specifically regarding eating disorders, The International Association of Eating Disorder Professionals has started a chapter here in Tucson.  This is an important first step towards more awareness and education about eating disorders.  The IAEDP will be offering an open meeting featuring author Harriet Brown on Friday, March 11.  Harriet Brown will also be participating in the Tucson Festival of Books.  Her book, Brave Girl Eating, is a valuable addition to the field and provides a family's experience.

Using Animation to Talk about Eating Disorders

Sometimes books and dry lectures aren't enough to capture the imagination and attention of people who sincerely want to learn more about eating disorders.

This link takes one to further information about eating disorders using animation.  They are quite clever!!

I'm going to ask around to see if I can link one direction up here for viewing, too, as I'm still a neophyte about things like this.

Letting Go/Detaching With Love

Each time the subject of Letting Go/Detaching with Love comes up in discussion, I benefit from a different perspective thanks to the sharing of many folks.   I have learned over the past six or so years that detaching with love or letting go is a process.  Sometimes I need to detach again and again and again.  I cannot imagine being able to accomplish this completely although I work at it -- I wish it were possible, but I know it isn't, especially when it comes to someone I deeply love, especially one of my children. 

Today, in discussion, I realized (again) that this journey to recovery isn't mine; it doesn't belong to me.  It's one of those peeling the onion realizations.  Step by step.  I cannot control the outcome. 

I think knowing that this isn't my journey is the hardest part to accept.  Part of my perspective -- my expectations, actually, color my perspective -- is my intense desire to be able to control the outcome of  treatment.  I cannot control the outcome.  I know that I cannot control the outcome.  I must keep gently telling myself that, over and over.  In the meantime, as an advocate, I'll do everything I can to provide the opportunities for recovery but in the end, the decision to get on that path doesn't belong to me.

Argh! That's so difficult to accept.  I want to be Samantha and wiggle my nose or Glinda of Oz and wave my wand.   Magical Thinking.  Doesn't work.    I must remember to turn this over to my Higher Power and trust, whatever the outcome.

The ED Voice and its Power - Understanding Your Loved One

Many parents do not understand what goes on in the mind of their daughter or son when they are overtaken by an eating disorder.  We must rely on feedback from them and others to comprehend how powerful and dominating the negative mind can be.

Three recent books explore this and the value of all is that they are written or in the case of one, drawn,  for the layperson rather than in the language of the medical/scientific community that can at times lose someone who does not have a medical/scientific background.  I value each book in part because the writer highlighted something that needs to be explored and discussed more - the ED "voice".  

These links may prove triggering to someone with an eating disorder.  This is truly written for parents and friends and definitely not for someone who is still fighting an eating disorder.

The first author is Harriet Brown writing in her book Brave Girl Eating - A Family's Struggle with Anorexia (Harper Collins, 2010).   I was delighted to find several copies of her book in Barnes and Noble a few days ago when I was just browsing to see what books on ED's are carried there.  I suspect the presence of the book is also a result of the fact that Harriet is coming to Tucson next month to participate in Tucson's Festival of Books as well as, I believe, to speak to the local chapter of the IAEDP.

In early notices about the book, a segment from the chapter "Before - What I Wish Everyone Knew"  was available to read and can be found here if you scroll down to page 2 of the actual book.  Harriet Brown writes of the voices in her daughter's head -- the negative thoughts that spring to life when one is struggling with an eating disorder.  These voices undermine the ability of the person to get out of the trap of an ED without the help of an advocate, re-nourishment and therapy.

The second book is Portia De Rossi's recently published  Unbearable Lightness - A Story of Loss and Gain (Aria Books, 2010).  She also candidly speaks and writes throughout her book of the ED voice that intruded into her life.   Here is a link to read her prologue to give the reader a sense of one person's experience with this but also that reflects the experiences of others.   She noted, and this is also very important, that the more on the path to recovery she got, the louder the voice became as the ED part of her mind became enraged.  Again, this is very real.  This voice can lead a person to self-sabotage everything they have gained in, for example, three months of treatment.

In an earlier post I created a link to a page on the website Something Fishy titled If You Really Knew Me.  This site carries some thoughts that are present, too. The thoughts were contributed by several people who were fighting eating disorders.

The third book is by Nadia Shivak who wrote and illustrated Inside Out - Portrait of An Eating Disorder (Antheneum Books for Young Readers, 2007).  Here's a link.  Nadia Shivak's images get to the heart of what she was feeling and thinking as she struggled with her ED from a very early age.  Her portrait of the ED as a dragon is very telling.  The picture of her tiny self curled up in the belly of the dragon speaks far more than any words could.

What I have learned from a long-time acquaintance with this disease is that the more entrenched the eating disorder is, the more a person's life, will, behavior, and thoughts are overwhelmed.  A normal life as many of us know it cannot happen without a lot of hard work.  The goal is to completely replace these behaviors and thoughts with an entirely different and healthier way of being,  living, eating and thinking.

To a new parent:  this indeed is a medical emergency.  Do not waste time.  The more entrenched the eating disorder is, the longer it will take a person to break free of it.

To a parent of an adult who has had an ED for some time:  please try to remain an ally of your beloved adult child and help him or her obtain therapy and guidance to get on the path to recovery.  I know, from experience, this can be a difficult prospect but even if that help is simply listening to them using, for example, this effective communication method called LEAP, you can make a difference.  If you can work with them to get them into treatment, so much the better.  I have written about possibilities in a different post on this blog found under the heading, Of Note.

P.S.  Dr. Julie O'Toole of the Kartini Clinic offers some common phrases we use and how they are "translated" in the minds of those with eating disorders.