The Buddha and the Borderline: A Memoir

Normally I would write a substantive essay before posting here; however, I want to highlight Kiera Van Gelder's book, The Buddha and the Borderline - A Memoir:  my recovery from borderline personality disorder through dialectical behavior therapy, buddhism, and online dating (New Harbinger Publications, Inc., Oakland, CA, 2010) now and write more about the book later after I figure out how I'm going to present it in terms of being a family member.

After perusing Kiera Van Gelder's work but setting it aside late last Spring to read and review Borderline Personality Disorder: New Reasons for Hope by Francis Mark Mondimore, M.D. and Patrick Kelly, M.D., earlier this week I picked it up again and read it word for word  because I wanted to get a first-hand up-to-date look at BPD from the perspective of a person who takes the reader on her journey with BPD (meaning she introduces the reader to BPD, to the effective (for her and why) therapies used, and how her life has played out - at least until 2010 when the book was published).

I learned so much from this book! and recognized my loved one's behaviors more times than I can convey here.  I highly recommend this book, too, as do many well-recognized to the field of BPD people among them (from the pages just inside the cover) Robert O. Friedel, MD, author of Borderline Personality Disorder Demystified; Perry Hoffman, Ph.D, president (2010) of the National Education Alliance for Borderline Personality Disorder; Blaise Aguirre, MD, medical director of the Adolescent Dialectical Behavior Therapy Residential Program at McLean Hospital in Belmont, MA.; Tami Green, internationally recognized speaker, life coach and advocate for those in recovery from mental illness, Roy Krawitz, author of Borderline Personality Disorder The Facts; Randi Kreger, author of Stop Walking on Eggshells and The Essential Family Guide to Borderline Personality Disorder -- this latter book by Randi Kreger helped me a lot!) and several more.

As Robert O. Friedel, MD, notes - "A must-read for people with this disorder, their families and loved ones, and mental health professionals."

I hope to illustrate why and how Kiera spoke to me through her writing.

More later.

Too much dopamine? not enough oxytocin? SSRI's? Autism Spectrum?

In earlier posts, after a detailed discussion with Martha Fankhauser, a pharmacologist whose interest extends to working with local behavioral health providers, I wrote about the balance of SSRI's and dopamine, and mentioned the problems that occur when dopamine is in excess.  A simple explanation along with symptoms can be found at this site, too.     I  also thought out loud about the significance of oxytocin.

These neurotransmitters and this hormone are on my mind again today because I just read a fascinating article in today's New York Times (December 26, 2011) titled "Navigating Love and Autism" in which the young man mentioned, who has been diagnosed with a form of autism (others describe the symptoms as being along the autism spectrum) known as Asperger syndrome, is also thinking about these things.

The article is an insightful piece, looking at the problems that people -- children, young adults, and adults -- must deal with.  The article is also illuminating for those who do not understand the syndrome or haven't needed to not only because it reviews articulately the behaviors that many find rude or hard to understand but also opens doors of possibility for those reading it to recognize behaviors of a family member or client (as in the case of a psychologist or psychiatrist).

I am among many who believe that many of the behaviors we see connected with the autism syndrome, eating disorders, "personality disorders"  such as borderline personality disorder (which research is showing is also a disorder of the brain rather than of the personality) and other brain disorders such as schizophrenia  are all linked in the sense that they rise from imbalances in neurochemicals or in the endocrine system.  Until the cause is found that might be treated, the current approach is to treat with meds.  Finding the right one, or multiples, and the balancing of those is critical.  So is teaching those with these disorders to learn how to cope and therefore develop new and improved ways of interacting with  and responding to their environment.  

A significant interest of the young man written about -- Jack Robison -- is on the biochemical/neurological issues that are in the background of his syndrome and he has been investigating those.  I hope he and others continue the investigation.

"Out of the Darkness"

"Out of the Darkness" is the title of an essay written by Mark Lukach that appeared in the New York Times on Sunday, November 27, 2011, in the Sunday Styles Modern Love Section, p. 6.  The title caught my eye because it reminded me of the incredibly illuminating essay that was originally published in Vanity Fair and then became a book by William Styron - Darkness Visible - A Memoir of Madness (Random House, 1990) that I purchased almost twenty years ago when I wanted to understand more about depression and perhaps empathize more effectively with a loved one suffering from a severe depression at that time.  The essay written by Mr. Lukach is accompanied by a sketch showing two people in a sad embrace with the image of a woman falling in the head of one of the two people.

I could stop here and encourage you to read it but I want to say a bit more about the article.

A husband walks through and supports fully his wife's journey through a terrible psychotic break and the story is rich with language that so well describes her and his experience.

Essays like these, I believe, are so helpful to the public unfamiliar with brain disorders.  So many (and at one time I counted myself among them) do not understand mental illness.  So many read and hear comments that stigmatize mental illness.  The media publishes and displays the comments and views that stigmatize mental illness/brain disorders to the detriment of many who are seriously ill and need help but who are afraid to ask for it for fear of being labeled unemployable or worse yet, called "crazy" - a terribly derogatory word.

Organizations like NAMI are working to de-stigmatize brain disorders/mental illness including eating disorders.  These illnesses and the states that are present during these illnesses are extremely debilitating and undermine the people who develop them.  An essay like this and the work of countless people is important to change the mind-set of the public.

Has the Tipping Point Been Reached? - Drs. Bulik and Ravin

This week two different internet news items caught my attention.

The first was a 56-minute presentation by Dr. Cynthia Bulik of the University of North Carolina at Chapel Hill at a Stockholm Psychiatry Lecture held at Karolinska Institutet, November 15, 2011.  The title of her talk is The Complex Dance of Genes and Environment in Eating Disorders and can be found here, thanks to You Tube!  Some of the slides she presents are graphic and can be triggering or very upsetting to those with either anorexia or bulimia.  They were important, I believe, for the thrust of her talk.  Dr. Bulik's lecture is hugely important not only for the scientific information she presents  but also because she has taken a step further and looked at the potential for possibly preventing the occurrence of eating disorders in the offspring of those with either eating disorders or the family propensity for those illnesses.  Those of us who attended the F.E.A.S.T. conference in early November in Alexandria, Virginia heard some of her points; this lecture is far more extensive. 

I was also excited to hear her state there is a genetic consortium of scientists to further the study of anorexia nervosa known as GCAN.  The website that is part of the Department of Psychiatry Eating Disorders Program at UNC Chapel Hill states, 

Since 2007, the University of North Carolina Eating Disorders Program has led a world effort to unite clinicians and researchers around the world in an effort to identify genes that may influence risk for eating disorders. This has resulted in the Genetic Consortium for Anorexia Nervosa (GCAN) which currently consists of researchers and clinicians from 16 countries around the world. Together with researcher from Kings College London, the UNC program has been honored to receive a grant from the Wellcome Trust (WTCCC3) to conduct genomewide association on over 4000 DNA samples from individuals with anorexia nervosa. All members of the consortium are gathering information about eating disorders course and genetic material (DNA) from any individual who currently has or has had an eating disorder in the past. This world-wide effort is inviting every person with current or past anorexia nervosa to take the time to roll up their sleeves and help us figure out the cause of eating disorders.

We are currently gathering information and genetic material (DNA from a blood sample) from women who have had anorexia nervosa at any time in their life. Information from this study will advance our understanding of the causes of anorexia nervosa and further our ability to develop more effective treatments and prevention strategies.
If you are female and have had anorexia nervosa at any time in your life, you are invited to participate in this study. Participation only takes 30 minutes and includes a blood draw.

Call Jessica Baker today at 919-966-1217 or her at jessica_baker@med.unc.edu if you are interested in donating your blood to help us unlock the genetic code of eating disorders.

Note that they are looking for participants for this study.   

The word consortium is what especially caught my attention because this concept - consortium - is spreading throughout the scientific world to bring research results forward faster, to obtain grants and donations to expedite that research, and to collect meaningful data that is understandable across fields.

So is consensus science.

The second item was Dr. Sarah Ravin's recent post titled, "Active Ingredients"  Dr. Ravin's post is extraordinary because she not only takes a firm, public stand on the approach to be taken when treating those with eating disorders, she also provides a flow chart for how one must treat a person with an eating disorder.  This post is important for scientific researchers, psychiatrists, medical doctors, therapists, nutritionists and families.  I would call it a "recommendation for best practices in the treatment of an eating disorder."

Her introduction is so very important -

To the patient’s detriment, many clinicians do not add the right ingredients at the right times in the right doses. For example, many individual therapy approaches focus initially on helping the patient develop insight and motivation to recover. Full nutrition is not required, or even encouraged, until the patient has lost a significant amount of weight. 

Many clinicians are simply using the wrong recipe.

Dr. Ravin goes on to list the essentials at each step as well as the issues that can wait.  The flow chart isn't for a month or even three months (the typical length of time paid for by insurance companies in this country, the latter figure of three months rather unusual).  Her chart covers a period of 12-18 months (!) and in closing  incorporates a list of must haves  before a parent sends a young person off to college or to live independently.  

Dr. Ravin highlights the importance of investigating the possibility of other factors such as brain disorders like anxiety, OCD, and depression and their treatment, something I've been pushing for for a long time in comments on Something Fishy and other websites because of my loved one's experience.  Too often families and therapists think a person will be "well" once they are re-nourished and in some cases that is true or seems to be true.  The symptoms seem to disappear.  Yet, the propensity is still there.  In many cases  this myth of "only an eating disorder" must be dispelled on behalf of those who fall back into the abyss and cannot seem to climb out because these and other illnesses have not been diagnosed, have not been treated, and the individuals have not been provided with the tools (also mentioned in Dr. Ravin's chart) to quell their anxiety or to "regulate emotions and tolerate distress."  This is where CBT (Cognitive Behavioral Therapy) and DBT (Dialectical Behavioral Therapy)  and other modalities are introduced.

I was so thrilled to see and read  Dr. Ravin's post as well as watch Dr. Bulik.  I know we've reached the tipping point.  Now with films like Someday Melissa and Miss Representation getting nationwide attention (the latter has already been screened here in Tucson by The Arizona List) and organizations like F.E.A.S.T., NEDA and its affiliates, and NAMI along with the attention of the National Institutes of Health's National Institute of Mental Health (thank you Dr. Insel!) we need to keep raising our voices and spreading the word.

A Map of the Brain

Thanks to the "magic" of Facebook and social networking, I was alerted to the existence of a lecture titled "A Map of the Brain" by Allan Jones on TED.

Great way to launch one's knowledge about the brain.

Go to this link.   You will, I hope, enjoy a fascinating 15 minutes or so lecture.

A Description of Our Family Member's and Our Experience - 2016 update

[April 2016]

[This piece is periodically updated as more information becomes available.  The 2011 version was my presentation to a group of health care professionals.  A later version was my presentation during a lobby day in 2013 in Phoenix for State legislators.]


In 2011 I was asked to present "my story" at a meeting of the local chapter of the IAEDP, one of the eating disorder associations, so the care providers present (therapists, nutritionists, residential program folks, etc.) could hear my story along with the stories of two others, as well.  We were limited to about 15-20 minutes if I recall correctly.  Sometimes I wish I could also hear my family member's (FM) story for I know that I only know the tip of the iceberg of her experience(s), many of which I know have been gut-wrenching in all senses of that word.   

Yet FM's is the journey that brought me to change direction of this blog.  FM's journey also led me to dig deep into my self some more and to learn how to respond better to the situation and to her needs.

I am now the in-my-seventies family member of and firm advocate for a beloved person who has been fighting bulimia/anorexia for more than 27 years.  FM began her fight in her mid teens although in retrospect there were signs of picky eating many years before.    I intend to talk here about my experiences in learning how to navigate the system here in Tucson to help my FM obtain assistance as well as offer suggestions for next steps.

As I have written elsewhere on this blog, I fought bulimia for about 15 years until I decided I was sick and tired of being sick and tired.  I quit about 40 years ago and have been in recovery - an ongoing process.
  

My family has a history of depression, eating disorders/disordered eating, anxiety disorders, autism spectrum disorders and even suicide.  I did not know these details when my FM first came to me for help in the late 1980’s.   She told me she had begun purging at the suggestion of a friend in order to lose weight (she had been teased) and had become hooked into it, so much so that she lost weight and descended into anorexia, as well.  I have since learned a lot more about what happened to her around that time and in her college years as she has gradually opened up to me.   

Bottom line?  The propensity for this disorder runs in our extended family but I didn’t comprehend or understand this when her journey began or even mine.  I was told then  and and had no reason not to believe that one month of residential treatment was sufficient for her to get into recovery.  I hoped that was true because I didn't want her to continue as I had for so many years.  As I later learned, a month is not enough..... for anyone.  Now I strongly recommend 6 months, especially for those for whom Family Based Therapy at home does not work.

FM did receive additional outpatient therapy over the next few years from a variety of therapists and then, as far as we could tell, she was in recovery.  Her weight appeared stable; she looked great, actually.   Her eating remained disordered but she told us she was no longer purging.

I have come to firmly believe that ED’s can become coping mechanisms gone awry (I know not everyone fits this profile), are  genetically based biological brain disorders and even linked to other addictive behaviors as well as brain disorders like anxiety thanks to extensive research  of many people who are devoting their lives to the study of eating disorders.  I also now understand that I and so many other parents didn’t cause this.

[Interesting that there now exists (May 2015) a document titled The Nine Truths About Eating Disorders and many of my beliefs are included in that document.]  

I have also learned that our family environment and learned behavior from our own family experiences can provide a climate that may need to be modified  on behalf of our children who have been diagnosed so that the family can become supportive of their need to get into recovery.    

I have learned better ways of communicating thanks to the wonderful work of Dr. Xavier Amador who developed the theory of LEAP and wrote about it in his book, I Am Not Sick, I Don’t Need Help as well as a terrific exercise based on the book The Five Love Languages by Gary Chapman.   I wrote about this communication method and this exercise in an essay about communication on my blog.  And, I learned about the success of the Maudsley Method that encourages refeeding at home coupled with Family Based Therapy, otherwise known as FBT.  I first learned about this method after I discovered Laura Collins's book Eating with Your Anorexic on the shelf in the University of Arizona bookstore.

In the early days we parents turn to therapists and other practitioners in the field of eating disorders – relied on them, actually --  to help our offspring get on the path to recovery.   I also have believed for a long time that FM’s recovery depends on a team effort that includes family members.  And, as Dr. Janet Treasure in England and others are helping the profession to understand, this disease turns a family and its members upside down and inside out. 

By the time we get to therapists with our loved one, many of us are frantic with worry.  Not only that, but our family dynamics seem to be abnormal because everything and everyone is in disarray.  For example, there have been times when I thought I would die of sadness and pain because of my FM’s illness and my seeming inability to do anything to help her.  I was labeled overly enmeshed.  How could I not be?  How could anyone not be?  Many parents develop Post-Traumatic Stress Disorder.  I certainly did.

The team approach/family based therapy hardly existed as recently as 2004.   That’s when FM descended again further into her own hell, finally cried out for help from us, and we launched a concerted effort to help her in any way we could with what we knew at the time, which wasn’t much.  Thus began a series of several residential treatments and many hospitalizations, one occurring a few years ago and lasting about six months of in-patient treatment -- at her request and with her initiative – a major step forward.  A more recent placement at the same location lasted shortest of the lot (less than a couple of weeks) for she was re-admitted only to rebel (as many with ED do) and be discharged for being non-compliant.  The facility has since indicated they are unable to treat her.  What in the world can be done when this barrier is erected?  Just give up and let the person die?  No.  Not on my watch. 

Support for the care-er was non-existent in 2004 when my family member first went into treatment at a local well-known facility.  The family, as many of you know and perhaps learned during your training, was considered for many years and still by many to be the incubator for eating disorders, the mother being especially culpable.  This is a myth.  In fact, FM emerged from the first long-term residential experience with the conviction that pretty much everything was all my fault.  That facility has since re-examined all of its theories and practices to involve family members more and to work with them. However, after that first experience with Family Week, I lived under a cloud of guilt and blame until several things happened over the next two years.

 

The first was that two independent psychiatrists diagnosed FM with a co-occurring mental illness and emphasized, as well, a present and overwhelming depression and anxiety disorder.  What I had been suspecting for years – since FM's teens, actually, was finally being understood.  Not only that  but I did not have access to the same earlier diagnosis, unfortunately.  [I learned this years later in an authorized two-way discussion with the therapist who had worked with FM in 2004.]  Whether I could have done something or not, I do not know.  The diagnosis then was avoided by many in the field and believed to be impossible to change.

In 2007 thought I no longer needed to feel weird each time I spoke up and asked, “don’t you see something else? Something isn’t right. Please spend time with FM.”   In fact, more than 65 percent of people who develop eating disorders have a pre-existing anxiety disorder.  Since characteristics of the Autism Spectrum run in our family, that may be a factor, as well.

The second was that a friend of mine suggested I attend a Family to Family several week course offered by the local chapter of the National Alliance on Mental Illness, better known as NAMI.  This course provided me with phone numbers, information about what to do in a crisis, a better understanding of the brain and of mental illness, what resources were available in our community including a wonderful local resource called SAMHC, and an understanding parent group to which I came and they came for support.

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 because I continue to periodically sit in waiting rooms.  If anything, because of the State of Arizona cutbacks, the situation is even worse because many people are now taking generics rather than the original medications that are critical for their state of mental health... or no longer are taking any medications at all because they have been dropped from the AHCCCS roles and cannot afford the cost.  Often, these generics aren't the same as the original medication.  My doctor explained that the drug companies that make the generics have the leeway of anywhere between 85 percent and 125 percent of accuracy in the amount of the drug needed per pill.  There have been draconian funding cuts to the behavioral health agencies that provide services, as well, so that more of the slack has had to be addressed by our local police and fire departments.  Fortunately we now have something called the Crisis Response Center.  Unfortunately, often these same people are stabilized and released back on the street again with little support to continue their treatment on the outside, especially those who have been mired in their illnesses for some time.

The third was that I joined Al-Anon.  I was unable to find an ED support group for family members of those with eating disorders.  This group and the people on  (that no longer exists, I believe) “Something Fishy” listserv literally saved my life.  Something Fishy disbanded.  However, F.E.A.S.T. also maintains a site called Around the Dinner Table.  We shared and continue to share our experience, our strength and our hope.  Not everything applies but a lot does.  As the saying goes, “Take what you need, and leave the rest.”

And fourth, I was referred to an excellent therapist who took me on as her patient and has continued to work with me so I could/can develop tools and behaviors that  help me in my role as advocate.  Her guidance also helped me to replace my ingrained at times unavoidable - given my FM's physical health - and hysterical involvement with healthier boundaries. 

After my FM returned to her destructive behaviors after one four-month period of treatment and before three more recent treatments (the most recent being a full year), I despaired and my therapist referred me to a psychiatrist who interviewed me at length, has been following me for more than three years, and who prescribed two medications (one of which I no longer need to take) that with our joint tweaking has helped me deal with this ongoing and other situations within my family, including the increasing ill health of my mother and her eventual death in 2009 and its aftermath.

Prior to pulling all of these resources together, I would go to bed at night and feel my heart beating raggedly in my chest.  I wasn’t sleeping well.  I was terrified that at any time I would receive a call that my FM had died.  Truthfully, I still know that this phone call or visit might happen.  FM insisted on living separately after the first two-month residential treatment experience in 2005 - the parentectomy thing.  For a time, every time I heard a fire engine or saw an ambulance, knowing that my FM had called these for help on many occasions, I would think the worst.  I had been overwhelmed watching my FM’s sabotage of her self.  My marriage was suffering.  I knew I had to do something. And I learned that, like many people in a similar situation, I was suffering from post-traumatic stress disorder and I needed to get help myself.

I began to read and learn.  I read all the materials I could on eating disorders and mental illness.   I acquainted myself with the work and online materials of the National Eating Disorders Association, NEDA.  I began to write about my experiences in dealing with the system here.  I continue to keep a log of everything including all medical records and emails.   Later I became aware of the on-line group F.E.A.S.T. 

For those family members reading here, because of HIPAA laws, often those who care for our loved ones never receive critical information from previous experiences/hospitalizations including, for example, the names of medications that are contraindicated or don’t work.  I began to feel comfortable enough with my experience to share it with other's  – both my mistakes and our successes. 
 

Because FM is an adult, I wrote an essay on my blog that includes steps one can take if one is the parent of an adult with an eating disorder.

This journey has been awful, not only for me but also for my family member.

Beginning in August 2007 after learning about my family member's additional diagnoses, I needed to initiate another Title 36 episode because no one else who was knowledgeable about the situation would.  The only other time one had been initiated was by two doctors at the hospital to which she was transferred from the first treatment facility in 2004  She had been dismissed (ejected is a better word) from treatment by an ED residential facility for non-compliance (so common, especially for the first month or two in treatment). I began to live in my car (so it seemed) for hours each day taking FM at her determined to get well request to therapy sessions, to meetings with a psychiatrist, to group sessions, to medical doctor appointment, to labs .... etc. in order to be admitted to treatment again.  It was not safe for FM to drive herself.

 

I spent a chunk of many days in the waiting room of one of the behavioral health providers here learning by observing, 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 FM navigate the system only to see FM fall through the cracks and almost die -- at least four times -- because although she was and continues to be officially Seriously Mentally Ill (SMI) and assigned to a behavioral health agency, due to high turnover of staff at that time 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 or because, characteristic of her illness, she refused to participate or seek treatment.

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.   It’s really important that family members ask for their loved one’s consent to do this.  FM gave consent.  Also know, however, that even without consent it is legal and okay to report changes in behavior to your loved one’s doctors and therapist.  Parents are with their children far longer than the hour in the doctor’s or therapist’s office!  Some health care providers really do not like to be contacted but a short note will document the situation, something that may be important to refer to later.  Again, refer to that truths document.  

I continue to 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 and would not have gone there in the first place if they didn't (I know this happens; I saw it happen.  Parents need advocates.  So do adults.).  

I know there are still [2016] hospital staff here that simply do not understand eating disorders -- 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 for FM (learned at the same hospital during a previous ER admission and in their records) only to send FM into an extreme panic attack (this is called a paradoxical effect)  that culminated in an escape from the ER with an IV still in place?  Note that even getting into the ER and staying there was a hugely scary undertaking for FM.  FM walked two miles home.  I had left the hospital earlier after being reassured that she would be spending the night there and was fourteen miles east of the hospital when I received a call from the hospital on my cellphone telling me that I was observed picking FM up after her escape.  As you might imagine, I was shocked by the false accusation, furious at the staff,  and I did not sleep well that night wondering where she was and how she was until she called me the next day.

Can you imagine sleeping on the floor overnight in a cubicle in 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 in the first two years or so - actually not really being aware of what Title 36 offered, I did that and several other things until I realized I'd run out of options and the doctors on staff just didn't "get it".

I know things can be better because one hospital here stepped up to the situation and worked to understand what was needed.  The staff was wonderful.  Now that hospital's psychiatric ward has been closed and the hospital's related longer-term facility has also been closed due to  lack of funds.  Fortunately the Tucson area now has the Crisis Response Center, the centralized place for anyone in mental health crisis to go for help.

There was a behavioral health provider team (her team) in action here that went to extraordinary lengths to understand eating disorders and to provide the best possible opportunities for recovery although residential treatment is difficult to obtain through the county system and as we know very expensive for the amount of time that should be spent in a facility to recover the lost “self” and the lost ability to feel hunger and/or fullness, among other issues.  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.  Read the most recent legislation update here.   NAMI is very active, as well, to obtain parity with coverage of other illnesses.

Take note:  there is precedent in the State of Arizona now of treatment arranged and paid for by a government agency for an adult.  There is a long-standing precedent for treatment paid for a child under the age of 19.  Private insurance companies should, in my opinion, follow suit.  Whether funding is available is, of course, another factor.

If the hospital I referred to and my family member's first formal team can learn and change, so can others.  But, it takes resources. The AED has published a booklet that can help.  Distribution is desperately needed.  [See list on the right side of my blog for a link to AED and directly to that booklet.]  

Freelance Science Writer Carrie Arnold recently completed a comprehensive book about ED titled Decoding Anorexia:  How Breakthroughs in Science Offer Hope for Eating Disorders.  This book could/should be required reading for all in medical school and further by all in the field who treat or might treat someone with an eating disorder.  This book is especially valuable to parents and to those adults with the illness who are determined to recover.

However, I realized that no matter how much I learned and understood, the bottom line was that FM, an adult, needed to come to the conclusion herself that she needed help and that she needed to ask for help. In fact, she does ask for help only to succumb to the effects of her brain disorder that sabotages what her "self" so desperately needs.

Unfortunately, the act of asking for help immediately characterizes her and others as not a "danger to self" and yet she and they are a danger to self because the (as I just wrote) this brain disorder sabotages what her "self" so desperately needs.


A few years back a respected member of the medical profession - a pediatrician - also succumbed to this disease.  A doctor.  Someone knowledgeable about the workings of the human body and brain.  Does not this tragedy indicate how deadly and distorting of reality this disease can be?

FM was officially declared Seriously Mentally Ill for the first time in early 2005 and was court-ordered into treatment as I wrote earlier, following Title 36 procedures instituted by wise doctors at the hospital to which FM was transferred from the first residential facility that ejected her after only a few days in late 2004 when she refused to accept treatment and follow procedures.  She became eligible for a variety of services.  Although she became and continues to be a client of a local behavioral health provider, at that time she slipped through the cracks and because of HIPAA laws, as I stated earlier, I was unaware of several things until a crisis developed.   

As well, because eating disorders were - actually, are -- still not well understood, assumptions regarding my daughter’s abilities and state of mind were incorrect and she received substandard care.   In other words, she could present herself as knowledgeable and “together” but, in fact, she could not sustain this state given her health, both physical and mental.

As I indicated above,  her behavioral health team continued to engage with her for her ongoing treatment.  Getting there took a lot of effort by all members of her team, including me.  I did not hesitated to speak up, provide materials, and advocate for her.  She has a different team now that operates under different circumstances.  

However, I learned early on that in spite of a court order that in this case was still in place, a family is often left to make decisions like petitioning again under Title 36 for involuntary evaluation.  Each time I have petitioned, I’ve wrestled with the decision knowing not only would this course of action infuriate her (and, of course, it did), it might also limit her possibilities later in life.  Yet, I believed, the step would save her from herself and hopefully save her life.  I also learned that in spite of petitioning and seeing red flags everywhere, it’s possible for a petition to be denied anyway.  Hers was dismissed at a critical time.   I experienced what it was like to come upon the results of a desperate act that I knew was coming (2009).  

As an important aside, please advise your client’s family members that they should not under any circumstances go alone to their loved ones place of residence when they suspect that something bad has happened.  Call 911 and explain the situation and ask for a welfare check.  Or meet the officer or team but wait outside.

Things became worse after that episode that was followed later by hospitalization when her weight and physical state had plummeted even further.  Imagine needing to call a lead person of the oversight organization personally to intervene to get your family member admitted to treatment in local facility and then finally hospitalized only to experience the horror of learning your daughter was treated incorrectly in the hospital, after one horrendous episode of electrolyte imbalance at a local residential facility that advertised itself to treat eating disorders, to the possible point of compete disability? 

This is a point that  bears repeating, especially if your loved ones binges and purges.  Her or his electrolytes can become terribly unbalanced and it's critical that the staff know that your loved one does binge and purge and that blood electrolytes are assessed.  Being provided with just intravenous saline could cause more harm; potassium may also be needed.

Here we are in the Spring of 2016 following one year of inpatient and 3 years of outpatient and FM's eating disorder is firmly entrenched.  Several recent visits to the ER of local hospitals have reminded me that some doctors still do not know enough to recognize, for example, the symptoms of binging and purging even when my FM (and I) have said that she has bulimia.  One of the more recent ER visit and subsequent hospitalization occurred because FM's electrolytes were 2.1 for potassium, 25 for sodium, and low calcium.  She was slurring her words upon arrival by ambulance because her brain was not functioning - a doctor assumed she was under the influence of something.  Only when the bloodwork came back shortly afterwards did the ER go into action and then they almost lost her because they gave her saline solution without potassium.  When her potassium fell further, they realized their error. She was subsequently admitted to the hospital but as has been the pattern, FM demanded to be released two days later.  A similar event occurred only a couple of weeks before at a different ER.  Both facilities have her records.  What's the problem?  For starters Arizona does not legally recognize eating disorders as illnesses to be treated and paid for by insurance.

After a year of merry-go-round of admissions to the crisis center, hospitalizations, and then discharges with nothing gained, I became my FM's guardian in hopes of effecting better treatment for her.  My FM has been in the hospital for almost five weeks.  I am so very grateful that she is being helped.  Plans are being put in place for next steps.  Her weight is gradually approaching enough for her to be thoughtful and have more insight.  But, she's not there yet.  Advocacy has continued to be my full-time occupation.

To wrap up,  I’m going change course and focus on what I wish would be available to every parent whose offspring starts to show signs of an eating disorder.  

Much is summarized in this letter addressed to the parent.

Second, I wish all family doctors and dentists would be trained to know how to detect an eating disorder and what to do about it including what tests should immediately be run.  This information is available in a booklet from the the American Academy for Eating Disorders . I recently received materials that I hope to distribute to local area hospitals.  There's legislation moving through at the national level to address this and other facets of treatment. The organization F.E.A.S.T. - Families Empowered and Supporting Treatment of Eating Disorders -  founded by Laura Collins and currently led by Leah Dean maintains similar information on its website.  The Anna Westin Act is making its way through Congress thanks to the growing support and initial introduction of the legislation by bipartisan legislators, the diligence of countless volunteers, parents, family members all spurred on by the Eating Disorders Coalition.

Third I was delighted to learn in 2010 that the IAEDP began a local chapter here because I believed its presence might speed things up.   Much work needs to be done. There needs to be a list of all qualified and up-to-date in eating disorder theory and practice, including Family Based Therapy, therapists, nutritionists, and psychiatrists.  This list should be available in doctor’s offices and at the least at local hospitals in the social worker’s offices, ER’s, and in school and college counseling offices.

Fourth, NAMI needs to incorporate information about eating disorders into its local efforts and programs.  NAMI need to focus on each state and to work with legislators in states that do not recognize eating disorders as treatable biologically-based mental illnesses (similar to OCD, bipolar disorder, borderline personality disorder [which isn't a personality disorder but rather an emotional regulation disorder] depression, and schizophrenia).  Arizona is one of them.  Those with anxiety disorders, BPD and other mental illness often develop eating disorders.  The two often exist together.  They needed to be treated at the same time.

Fifth, local educational institutions starting at the grade school level should have the NEDA  publications about coaching and for teachers in their counseling offices as well as in their sports departments.

In fact NEDA will send information upon request to any educational institution.  Here is the link to make that happen.  Scan down the page for information on how to do this.

Sixth, Tucson desperately need post-residential and post- in-hospital treatment housing for adults working on recovery.   I think the Haven here in Tucson provides a working model for something that could be developed.  I believe it’s critical to have support services in-house something along the lines of retirement communities but for younger folks whose capabilities are on a higher level, as are most of those with eating disorders.

Finally, we parents need compassion and understanding from the therapeutic community.  It’s frightening and disorienting to watch a healthy young person get trapped in a path towards death.  We need more parent support groups or the knowledge of the existence of parent support groups that meet at a convenient time and often.  I know one of us presenting here sponsors one.  There are guidelines through NEDA regarding how to start one and how to manage it.

"Mental Illness Defined as Disruption in Neural Circuits" - Dr. Thomas Insel

Dr. Thomas Insel, director of the National Institutes of Mental Health, keeps a blog.  

On August 12, 2011 he wrote an article with the above title and I've linked it here.  I've also linked his blog on my blog site and now intend to review his previous posts.  I'm so excited to have found another important source thanks to one of the F.E.A.S.T. folks!!!

What is ADHD?  What is schizophrenia? What is depression?  OCD?  BPD?  Bipolar Disorder?  Can these be prevented?  can these brain disorders be treated before symptoms arise?  Can the brain's cortex be kept on track or put back on track to develop normally?  Other questions lurk excitedly in the background.

Dr. Insel closes by writing, "While the neuroscience discoveries are coming fast and furious, one thing we can say already is that earlier notions of mental disorders as chemical imbalances or as social constructs are beginning to look antiquated.  Much of what we are learning about the neural basis of mental illness is not yet ready for the clinic, but there can be little doubt that clinical neuroscience will soon be helping people with mental disorders to recover."

Borderline Personality Disorder - another biologically based brain disorder?

For those of you whose loved ones with eating disorders have been diagnosed with the accompanying mental illness Borderline Personality Disorder (BPD), TARA is an organization that offers information and assistance to families.   TARA - Treatment and Research Advancements/National Association for Personality Disorder.

As readers of this blog know,  I firmly believe but of course do not know (yet) that BPD will someday (hopefully soon) be recognized as a brain disorder of biological origin, especially given this article published May 26, 2011 in the New England Journal of Medicine by John Gunderson, M.D. 

This research by Stanley Siever is hugely important, too, and hopefully will lead those who are knowledgeable about BPD away from the early emotional experiences blaming (the mom/family thing again) and more into understanding that the basis of this disorder may instead have to do with neuropeptides like oxytocin and vasopressin.

I had not been familiar with TARA, but noticed a link provided by the Cleveland Center for Eating Disorders.  I now intend to learn more about this organization. 

Meanwhile, here's TARA's link to some other helpful publications including the one mentioned above by Dr. Gunderson.
 

Addictions

No, I'm not going to write about ED, although I believe that once those behaviors identified as eating disorders, whatever they are, become entrenched, the person is addicted to them.  Which is why an eating disorder truly is, for a host of reasons, a medical emergency needing immediate attention and treatment.

Instead, I continue to be intrigued by the path I am taking in my reading.  Having read the Immortal Life of Henrietta Lacks by Rebecca Skloot and then a book I posted about here earlier, The Emperor of All Maladies, by Siddhartha Mukhurjee,  I've just become acquainted with the writing of  Dr. Abraham Verghese, who is the author of the acclaimed book, Cutting for Stone.  Dr. Verghese took time out from his life as a professor of medicine to study and then be graduated from the Iowa Writers' Workshop.  We readers are all very lucky, I think.  Having finished Cutting for Stone this week, I looked him up and learned that he has written two other books -- My Own Country and The Tennis Partner.  So I ordered the books and they arrived today.

Not one to allow a book to pass unexamined even if I'm still reading another one, I picked up The Tennis Partner and read the prologue.  And, there it was again:  another viewpoint from another person in medicine who believes that alcoholism and drug addictions truly are diseases that are biologically based disorders of the forebrain.  In addition, the medical doctor speaking to David Smith, an intern addicted to cocaine and the subject of the book, notes on page 5 of the prologue that, "....you have a disease, like diabetes.  And just like a diabetic taking insulin and monitoring blood sugars, every day for the rest of your life, you will need to monitor and treat your disease."  Add eating disorders to this list.

[And here's an article from the New York Times on the subject of addictions, looking at what goes on in the brain.  This article is particularly important, I think, because the author also notes the prevalence of these behaviors in connection with other brain disorders.]

If only this philosophy would make it into federal and state laws and on into the regulations governing insurance companies so that all brain disorders would be treated equitably, without regard to cost and with knowledge of the time it will take to help the person develop new behaviors and the means to avoid old behaviors.  For many, it'll take several attempts before the demon is brought under control and then, as noted, the person will indeed "....need to monitor and treat your disease"...."every day for the rest of your life."

Now back to the book I'm currently reading, which is Bitter Pills - Inside the Hazardous World of Legal Drugs by Stephen Fried.

You Don't Know What You Don't Know

Let me repeat that:  You don't know what you don't know.

The first time I heard someone say this, I was attending a class offered by the National Alliance on Mental Illness, otherwise known as NAMI.  The local Tucson chapter is NAMISA.   The class, Family to Family, is still offered and I will be forever grateful to a friend of mine who not only told me about NAMI but also about this class.  I gained a tremendous amount of knowledge and also insight not only about the workings of the brain but also an inkling of what it must be like to have illnesses like OCD and Schizophrenia (through intensive class exercises) and more importantly resources in Tucson.

The point is, we aren't omniscient.  I know many of us whose children/loved ones are embroiled in an eating disorder or addiction or have been diagnosed with another brain disorder wish we had seen this coming, or understood what the early signs were, or somehow wish we could turn back the clock with the knowledge we have now.  But, we can't.

My goal and the goal I encourage others to have is to move forward from now, become the best advocate you can be for your loved one by learning as much as you can to change his/her ship's direction, and help your loved one get onto the path to recovery.  Spinning your wheels about could have's and should have's is a tremendous waste of energy.

You don't know what you don't know.

Brain Disorders: Resources to Help Parents, Other Family members, Friends and Loved Ones

After writing the previous post, I decided to illustrate what resources can be made available when an organization -- in this case NEDA, the National Eating Disorders Association -- makes publications free and available to the public through a website.

There are three publications currently available and up-to-date (as of summer 2010) for family members and loved ones, for coaches/athletic trainers, and for educators.

If you'll scroll through, for example, the Parent's Toolkit, you will find references to many resources.  The same goes for educators and for coaches/trainers.  For first time visitors, just click on the highlighted words to go directly to the publication(s).

Imagine if these publications could be made available to all the elementary, junior, senior high, and college/universities here in Tucson.  To counseling offices, to athletic departments, to hospitals.

It's not that difficult.  I did it by downloading copies for the earlier mentioned terrific mental health provider team and for the hospitals involved.  I know these were used.   Others can do this, too!

Similar manuals could be constructed for those who encounter people with mental illness/brain disorders.  Making them free and available to the public via websites (therefore in the library, too), would help a lot.  The Family to Family course I attended through NAMI provided us with an enormous notebook of resources and educational materials.  Perhaps this could be synthesized in some areas and expanded in others, similar to the NEDA parent publication.

The Academy for Eating Disorders has created a flyer to be provided to doctors.  NEDA has found that the first source of information for parents of those with eating disorders is the family physician.  Dental offices can use this brochure, too, since dentists often can be the first to notice the ravages of eating disorders.  Currently the information can be found in the AED Report 2012, 2nd Edition, Eating Disorders - Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders.

The same could be done for those who encounter people with signs of brain disorders/mental illness.  I have not researched this thoroughly and I do know that the local chapter of NAMI has brochures that walk people through a variety of mental illness as well as what to do.

When first confronted with illness, as mentioned above, most people turn to their family doctor.  I believe medical training must include a strong component on mental illness/brain disorders and on eating disorders.  I know this is beyond the scope of the forum, but it must be done.

In closing, one of the best resources in Tucson in my experience, other than NAMI,  is SAMHC - the Southern Arizona Mental Health Corporation.  I think it might be useful to include someone from SAMHC on the panel.

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.