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.

The dilemma of long term illness

I've put down my "pen" for awhile.  I took a long break for myself secure in the knowledge that a team of very dedicated people was figuring out how to move forward on literally a day-to-day basis and that I not only needed to emotionally disengage but also needed to trust the process.

Earlier this year I did pull together a few articles and news items about entrenched eating disorders.  Eating Disorders can be long term battles.

After this hiatus that included a wonderful change of scenery, I returned to reading (I had thought I would just lurk) posts in a variety of places and came across a discussion about "walking away."

I believe "walking away" is different from "emotionally disengaging" - at least the semantics to me indicate a difference.  And, I have chosen never to do this in the more than 24 years that ED has been present in the life of my loved one.

Here's a piece (somewhat modified) that I recently wrote to address why I will not walk away.  The quote at the beginning of my post below is thoughtful and important.   However, there's more to the picture and here's my take.

Quote:

As it has been said many times, sometimes it's only when those individuals finally get tired of what their lives have become that change occurs.

I fully agree with this statement.

However, in some cases the likelihood of death occurring before this status is reached can be very high.  I know this.  I have witnessed this.  Scarily close.

If insurance companies are starting to redflag people who "fail" treatment [apparently this is happening], I would ask whose failure is it really? It's not just that of the person whose brain is altered by starvation and purging or binging.

I firmly support the idea that re-nourishment and re-establishment of positive behaviors takes more than 3 months and I become furious when I hear that an insurance company has stopped payment for treatment of this insidious set of diseases.  I would advocate for a year! and early on there was a program, I believe in California, that did offer a year.  But this was many years ago and funding dried up.  As I've written here before, not all families have the wherewithall to put Maudsley into practice in their home.  In addition, sometimes family based therapy in combination with re-feeding at home just doesn't work.
 
It's a very rare insurance company that provides treatment for longer than three months. And the thing is, more time is absolutely necessary to break the bonds that ED has formed with the brain of the person with the disease/brain circuit disorder.

The second problem that can develop is, for example, as a person with Borderline Personality Disorder as a co-diagnosis (and even this is a hurdle because many doctors, therapists and therefore insurance companies do not yet accept/recognize BPD as a brain circuit disorder; rather they identify BPD as a personality disorder) who starts to get a handle on what is going on, it's as though a red cape is unfurled in front of some of them instigating behaviors that completely disrupt their ability to continue in an environment labeled "willing to be here." Private facilities require that an adult client be "willing to be here."

I have witnessed this so many times. I can personally recount the experience of my loved one making the firm decision to get well and taking the responsibility of getting into a facility her responsibility. For one month I drove her at her request to obtain physicals and labs and doctor's visits and therapy, etc., etc., etc. to obtain all the documentation she needed to be admitted to a facility. She did the work; I provided the transportation. All was set. She was accepted. She struggled in the beginning to eat as do most who have an ED. She gained weight. She gained strength and then bingo! her BPD/ED combo took charge and she was asked to leave even though the part of her who knew she needed to stay begged to stay while the other part totally interfered. I know this happened.  Nadia Shivak in her book Inside Out: A Portrait of an Eating Disorder illustrated this very simply in words and drawn pictures.   [The reference is in my list of books on my blog.]

I wish private residential facilities would change their policy of not continuing to work with a client who isn't willing.  I believe this hurdle must change even if it's against the person's will because that will is still dominated by disordered and distorted thinking (refer here to the Keyes Starvation Study) for several months.

I don't think this hurdle is only for those with BPD, either. An addiction is a terrible brain chemical change that undermines a person, whatever that addiction is. It takes a change of heart and mind to be willing to get on the road to recovery and to avoid whatever it is that's addictive.

How? I think this is the question of the hour. When it comes to food -- which is life, along with water here in the desert -- this particular addiction (which I believe an eating disorder becomes) is deadly in a different sense. Alcohol isn't a source of life; neither is, for example, heroin or crack or percocet. There is a difference.  

Researchers and doctors and insurance companies and parents and loved ones must come to recognize this fact.

One extraordinary team has come to this conclusion and is doing all it can to create an environment to bring about this change of mind in the sense of ingrained behavioral patterns. The will to live has never left the person I am talking about but the disease and the addiction it created interfered big time and the claws of that disease and addiction go very deep.   I believe this change can happen.

May I respectfully say that "walking away" isn't the way I would word what must be done for people with eating disorders whose disease is entrenched. Having stood by as an ally for 24 years, I firmly believe this. As a survivor of anorexia/bulimia, I firmly believe this. I didn't have the additional brain circuit disorder component nor, thank God, was I cursed with an addictive brain so strong as to turn to other behaviors that further interfered with my choosing (yes, finally choosing) to get well. Others aren't that lucky.

Parents - Setting Your Boundaries, Marjie Ruth

Marjie Ruth's posts always provide me with valuable things to think about.  Here's her latest, again on boundaries.  Note that she coordinates a support group in Tampa, Florida so if you live in the area, you might want to check it out.

"...Nothing can be said to be certain except death and taxes."
~Benjamin Franklin

Dear Family & Friends of the Eating Disordered (ffed);

Our support group will be meeting again this Wednesday (7/25) at 7:00pm at the Hyde Park counseling Center in Tampa (for directions , chk out their website: HydeParkCenter.com). The ABA 12-step meeting for those battling a disorder will, as usual, be meeting at the same time at the same facility. All our welcome. If you expect to attend the ffed meeting, please drop me a brief line to that effect. The meetings are free, fulfilling, and even sometimes fun.

The topic of boundaries is recurring and for important reason. Our understanding of and ability to establish healthy boundaries for ourselves will affect all of our relationships, but none more so than that with our eating disordered loved one. ED's are a disease that involves the whole family. While we didn't cause the disease, we most certainly can and generally do find ourselves caught up in it, to a greater or lesser degree, and contributing to it through our unwitting enabling (see definition in 11/2 email: doing for someone what they could & should be doing for themselves).

As we think and talk about boundaries, the discussion ultimately leads us to the tough need to identify where boundaries are needed and the tougher still act of defining the boundaries in no uncertain terms. As the saying goes, this is where the rubber hits the road, and for many of us that's exactly when we find ourselves spinning our wheels. We know that things are out of kilter, and we rightly sense that we've become enmeshed in the problem. But we're still unable to see what would seem to us to be a viable option. In fact, it's generally not a matter of lack of options, but more of our inability to recognize that it's our own fears & worries--our own emotional baggage--that we allow to keep us stuck in the mud of enabling. The possibility that our loved one won't respect the boundary we set keeps us from drawing the line. What if we set a boundary and it is broken? We are ultimately afraid that our loved one will carry through on her/his implied threat of self harm (ie. starvation, emotional breakdown, maybe even suicide, etc). We think that our involvement will somehow prevent any such cataclysmic event. We cringe at the thought of having to actually follow through with the consequence. After all, it's always been our intent to make things better, and that could be the worst thing ever...or so we think.

And therein lies the problem, it's with our thinking, our perspective. All responsible folks live with rules and consequences. If we don't pay our electric bill, first there will be a late fee added; eventually the power will be turned off. If it were not so, if there wasn't any penalty for not paying our bill, if it were just left up to us to pay if we wanted but at no risk of being fined or having to do without power--how many people do you honestly think would be sending off that hefty check each month? But for most of us, we know and accept the boundaries the power company, the bank or landlord, the city & state government, etc. have set for what we can and can't do and for the consequences that will be administered should we cross the line. We may not always like the rules, but we respect them if only because we know what the result of disobedience or neglect will be.

It may at times be difficult for us to believe, but in spite of the complaining and dramatics and even outright hostility we must endure, our loved ones will ultimately respect us far more for our leadership (as in leading by example--setting an example of healthy boundaries) than they ever will for our pandering to their addiction's dictates. But, you may be asking, what if the boundaries we set seem to make their disorder worse? First, thank you for being open and honest enough to voice that fear. Secondly, it's critical that we come to understand that the addict will always seek to protect their addiction. One of the keys ways this is done is by manipulating us into thinking they're doing better when in fact they are merely doing a better job of fooling us, of hiding their addictive behavior from us. When we stop "cooperating" (that's what enabling really is--cooperating with the enemy), they may very well lash out in anger and even seek to exact retribution on us by hitting where it hurts most: they will act upon our fears by showing us just how disordered they can be. This doesn't necessarily mean that they're getting worse, only that they've quit hiding what they've been indulging in all along.
While life doesn't come with many guarantees (opening quote being an example of two exceptions), but there are some absolutes I can offer. Nothing earth shattering or that you didn't know already but keeping these in mind may be a help as you struggle to see more clearly just where your boundaries should be:

1. If your aim is to please everyone, you can be certain you'll fail.
2. If your goal is perfection, you will never attain it.
3. Everyone has second guesses and some regrets.
4. You can't change other people, only how you respond to them.
5. Enabling an addiction will never cure it, but only insure it's continued existence.
6. When you stop enabling, you will be able to take better care of yourself.

Hope you have a decent week.

Marjie Ruth
727-244-9011 (c)

sruth1@tampabay.rr.com

MarjieRuth1@gmail.com

Against Their Will - Another Essay re the Challenge of Treatment Refusal

The on-line edition (July 22, 2012) of Psychology Today carries an article by Emily Troscianko titled, "Anorexia and the Right to Die".

This discussion again evolves from the decision by Justice Peter Jackson previously discussed here on my blog.  


Emily's position is the same reached by several of us; that is, the brain of one with severe starvation syndrome resulting from anorexia leaves the mind incapable of rationally making the profound decision to end one's life.  It behooves scientists/doctors/researchers/caregivers to find a way to re-feed the individual and from there to assist that individual to reconnect with life and recovery.

The how is another question......

Traits...... introversion and extroversion and how this information meshes with family-based therapy

Yesterday one of my favorite bloggers connected her readers with another TED talk session.  After watching a remarkable presentation by Elyn Saks (Yale Law School Graduate; Professor, USC College of Law; and MacArthur Fellow among other accomplishments) and about her life's journey with schizophrenia, I decided to browse around and see what else I could find before dinnertime.

I noticed that Susan Cain had been a presenter (more than 2 million views at this point) - The Power of Introverts - and I remembered that I had not yet finished reading her book, Quiet - The Power of Introverts in a World that Can't Stop Talking (Crown Publishers, 2012).  In fact, I'd barely started a few weeks ago.  After watching her talk, I vowed I'd pick up her book again.  So, this afternoon, I did.

I'm not finished yet, actually.  But I am quite grateful to Charlotte for leading me to the TED site and for a few minutes of my own yesterday afternoon, because I've learned more not only about myself, but have come to understand a lot more about introverts, developmental psychology, and perhaps even about my family member.

I don't think I would have picked up the book this afternoon if I hadn't also attended my usual Saturday morning meeting and realized how far I'd come in the program (and how much more work I needed to do).  I know myself far better than I did eight years ago.  I've also come to understand at a much deeper level how different my family member and I are.

She's an extrovert.  In fact, she confirmed this yesterday when we talked.  I'm an introvert.  And, Susan Cain has helped me to understand better what these two words mean developmentally and how we differ.

I've also just realized how this knowledge fits so aptly into the concepts of family therapy and communication, topics that I've written about on my blog (links provided earlier in this sentence) - e.g. "All in the Family and Elsewhere."  Susan Cain provides terrific examples of how both children and adults respond to experiences, depending on this part of who they are.   For example, I rarely have either the television or the radio on.  Sometimes I'll listen to music while doing something.  My husband, also an introvert, often remarks about the peacefulness of our home and how much he looks forward to coming home after a long, busy, interactive day.  When my family member comes to visit, however, her first comment is something along the lines of "it's too quiet here!"

She likes to be with people a lot; I need time-outs and relish days at home after spending other days with groups of people in meetings.  One might ask, how does this translate into what you daughter or son needs as part of their recovery?  their experiences at home following a stint in a residential treatment center?  These are important questions for the family to address before their loved one returns home.

Backtracking a bit, I wrote a piece on States and Traits after hearing Dr. Kate Tchanturia's talk on Cognitive Remediation Therapy at the NEDA Conference in New York City a couple of years ago.  I hadn't thought much about traits lately until I listened to Susan Cain's talk.  I'm thinking a lot more about traits now that I've read her book and about the research of scientists like Dr. Jerome Kagan.

Dr. Kagan's studies have revealed that one can pretty much forecast whether one will become an introvert or an extrovert from infancy and that fMRI's and the work of one of his colleagues, Dr. Carl Schwartz, have shown that the processing of the adult brain really hasn't changed that much  - in other words the traits are fairly intact in spite of a lot of other things we call environment.

I'm still reading (Chapter 6 and sensitivity as well as empathy) and will probably come back here with more to say.  In the meantime, I've found reading Cain's book to be very helpful as I unravel the puzzle of my family member's journey.

Against Their Will? "The Challenge of Treatment Refusal"

The July 2012 issue of the International Journal of Eating Disorders arrived in my mailbox yesterday and on the front cover were the words:  The Challenge of Treatment Refusal.  Because I had just written two posts here having to do with treatment against the will of a person with a severe eating disorder, I suspected that this article might be of the same ilk.

The title of the article is The Stigma of "Mental" Illness:  End Stage Anorexia and Treatment Refusal  45.5 627-634 2012 and, in fact, the authors -- Amy T. Campbell, JD, MBE and Mark P. Aulisio, PhD -- propose (they write "argue") "....psychiatric patients should sometimes be allowed to refuse life-sustaining treatment in favor of comfort care for a condition that is caused by that psychiatric disorder and [we] articulate the core considerations that should be taken into account when such a case arises." (p. 627

Their conclusion contradicts that reached by the judge in the Wales case so fully discussed by the media recently in the UK.

This paper and the authors' conclusion also brought me to full attention because I have wondered "when is enough enough".  It seems dreadful to even think this when one is a parent.  It feels immoral, disloyal, unloving, inhumane and even criminal.

At the very beginning of this second round about 9 years ago, a wise therapist said to me, "hope for the best and prepare for the worst."  I do and I have.   This disease is life-threatening.   And I, for one, continue to hang in there.

But, what does one do if one's loved one sinks back down again (and again) into the morass of the eating disorder without any glimmer of the desire to change their behavior; to stop it and turn around despite utilizing and/or offering every single known method to bring about a return to the path to recovery and the stability of staying on it?

Let go and Let God?

What does one do when one observes a beloved human being endangering their life with a multitude of behaviors not the least of which is not eating and sees the pain they are in, both physically and psychologically.  What kind of life is this?

This is the dilemma being faced by many people whose daughter/son/patient/ward/family member has an eating disorder so entrenched that there appears to be no way out.  This is the dilemma that confronted the medical team of the woman (an adult) in Wales who sought the opinion of the judge.  This is the dilemma discussed by Dr. Tomas Silber in this paper.

This is tough stuff.

I want to pause here and take you to a thought that appeared in a post a few years ago written by a young woman I know who is in recovery and who makes it clear repeatedly that her recovery depends on constantly taking advantage of tools she has gained as well as the support of a therapist and a steadfast family.  She wrote in that post that if she had known those who she thought  "had her back" were talking about end of life care rather than recovery, she might have thrown in the towel and given up.

Think about this.  I sure do.  Every day.

Now I turn to the article under discussion here in which the authors look at two women, both having been fighting an eating disorder for 40 years and 25 years respectively.  The former, who is 55, has declared she doesn't want to do this anymore and the latter, who is 40, has stated she wants to live but she isn't willing to again take on the necessary treatment to get on the path to recovery.

They ask, by way of introduction, "....is there such a thing as an 'end stage psychiatric disorder' and if so, what are the conditions, if any, under which an individual might be able to legally and ethically choose to refuse further treatment for this disorder and opt for comfort care?" (p. 627)

Like Dr. Silber, the authors focus on issues related to what they call "capacity" and Dr. Silber calls "competence" and they go on to propose a "framework to guide systematic analysis of issues raised by this [their] article." (p. 627)   The authors discuss entrenched eating disorders.

There have been papers and a book, actually, referring to entrenched eating disorders as Severe and Enduring Eating Disorder (SEED) by Paul Robinson (Wiley-Blackwell, 2009) and I could go on about this condition.  But here, I want to focus on the topic of this paper and, as well, put out a call or a heads-up to people in the field and in the trenches to pay attention and participate in this developing conversation.  It is not going to go away.

The authors discuss the legalities involved including what informed consent means.  They look at capacity/competence.  They underscore that "....law and ethics also support an individual's right to refuse life-sustaining treatment" and then turn to philosophically explore what stand might be taken about those with psychiatric illness rather than physiological illness, for example, cancer.

The going gets tougher with their question, "Do Persons with Psychiatric Disorders ever get to Make Decisions to Refuse (Further) Life-Sustaining Treatment?" (p.629)  They claim that in fact this is permitted and accepted.  But, I wonder, what about those with serious mental illness.  Should they be permitted  to make such a decision?

Ultimately, after several interim steps looking at physical condition, the idea of an entrenched illness, the idea of what they call "psychic suffering," the authors believe that a person with a serious mental illness should be able to make such a decision and further, given the two case studies that they incorporate, they believe that any hesitancy actually "....perpetuates stigma directed towards persons with psychiatric disorders." (p.633)  Further, they believe one should take a holistic approach, a look at the entire situation rather than "just" competence.


The authors close by recommending, "....especially for psychiatrists, ....fuller contemplation of the limits of medicine, the nature of suffering, and the potentiality that a patient with an eating disorder may at some point make a rational decision to end aggressive treatment (which we very much distinguish from suicide.)" (p. 633)  They also call for "...an expansion of the model of end of life care and palliative care to include patients with psychiatric-driven disorders, and an expansion of the model of integrated primary physical/behavioral health to end of life care."

They conclude that "....end of life planning including hospice and comfort care measures was the clinically, ethically, and legally appropriate path...." for the two women.  (p. 633)

I found myself cringing as the analysis continued towards this their inevitable -- given their positions at each point -- conclusion.

I keep asking myself is there something about anorexia and the evidence about the disintegration of ability of thought and meaningful action gathered as a result of the Minnesota Starvation Experiment, headed by Dr. Ancel Keys - here in one interpretation that appeared in the online Psychology Today , that would argue in the direction of the position taken by the judge in Wales?

A difficult question worthy of further exploration and serious debate.

Against Their Will - A P.S. with thanks to an article by Jeneen Interlandi in the New York Times Magazine, June 24, 2012

Today's New York Times Magazine (Sunday, June 24, 2012, pp. 25-29, 38, 46-7) carries an article written by Jeneen Interlandi about the journey their family took through emergency rooms, psychiatric wards, psychiatric courtrooms, and in their case jails.

The title of the article, linked here,  A Madman in Our Midst, grabs the attention of the ordinary reader in a way that another title might not.  I know I cringed at the title because it exacerbates stigma but I applaud Jeneen and her family for making this story public and for incorporating so much information about the history and the status of the mental health care system in our country, in some cases state by state, as well as the arguments pro and con about involuntary commitment and treatment.

I think Jeneen Interlandi's article highlights and vastly expands upon what I wrote in a previous post, "Against Their Will - Treatment for ED and Other Brain Disorders."  The details she provides about the struggles her family had with the ethics of all of this reflect back to Dr. Tomas Silber's article, "Treatment of Anorexia Nervosa Against the Patient's Will: Ethical Considerations."

As Ms. Interlandi writes and as many of us caught in this cycle will tell you, "the absurdity of this situation wore on us.  How was anyone with a diagnosed mental illness supposed to recover through a revolving door of emergency rooms, short-term psych wards and [in her father's case] jail?"

If you are interested in what's happening across the country, take a look at the website of the Treatment Advocacy Center, the purpose of which is to "eliminate barriers to the treatment of mental illness" and which is lobbying for broader involuntary commitment standards.  Just released by the Center is A Guide for Implementing Assisted Outpatient Treatment, that [from the website] "includes 64 pages of practical information and instruction and appendices containing more than 30 sample forms and other documentation. For links to the guide, its appendices and samples, click here.

Change is needed for those who need to gain assured (meaning at least 6 months), not short-term, stability,  in a safe place before consideration of next steps.  As an advocate for those with entrenched eating disorders, I believe this placement with guided nutrition and therapy followed by a step-down program, must be available and is especially necessary.

Against Their Will - Treatment for ED and other Brain Disorders

Yesterday, while exploring the links that accompanied Laura Collins' recently posted presentation at the International Conference on Eating Disorders (ICED) in May 2012, I noticed a link to an article by Tomas J. Silber, MD, MAAS titled Treatment of Anorexia against the Patient's Will:  Ethical Considerations.

Silber's topic and the outcome of this kind of decision, referred to here in Arizona as Title 36, has continued to be a thorn for me because I and my loved one's team have made the decision to utilize this law several times as a last ditch effort to save her life.   It's a wrenchingly difficult decision to make for reasons that Silber discusses.  In all cases but one (and a month later she and we suffered the consequences of the judge thinking she was competent and could make it and at that point Title 36 was invoked) approval was granted, the most recent being almost six months ago.   Only over the past two months has she begun to re-gain (the word is used to illustrate that once upon a time she was at a healthy weight and needs to return to it) the weight through balanced nutrition so that she (her brain/body) is able to do the work ahead.  This initial process - to reach stability - can take six months to a year!  She's never been able to do this for a variety of reasons.  The most recent step is an attempt to give her another opportunity.

Yesterday, a well-educated scientist who is knowledgeable (because she is also in recovery) about eating disorders, took a thoughtful look at the recent situation in Wales in which a judge, at the urging of the care team, has ordered forced feeding for a woman who had given up the fight and whose immediate family agreed with her decision.  The consequent at times thoughtful at times emotion filled discussion has raised, I think with great value, the topic of eating disorders, specifically starvation eating disorders to public consciousness at a much higher level than before. [The post referred to is no longer available on line.]

We need to keep this conversation going.

The bottom line, for me, that so many of us continue to state is that nutrition must come first, for without a return to nutrition, the brain and the body don't have a chance against a starvation eating disorder.  And that return requires stability for quite some time afterwards, too.  And, this is only the beginning.  The hardest part is ahead for this young woman and for others who need to overcome entrenched feelings and behavioral patterns. 

So, back to Dr. Silber's article which takes a look at the ethics of treatment against a patient's will.  He includes in his introduction the point, which is well-known in the eating disorder community whether treatment occurs at home or in a hospital or in a residential setting, "....In many, if not most, instances of treatment for AN, patients receive some form of treatment against their will."(p. 283)  One only needs to read Harriet Brown's important book Brave Girl Eating to learn that even at home getting a child in the clutches of a starvation eating disorder to eat isn't the simple matter of just placing a plate in front of her/him and pleasantly asking him or her to eat.  Rather, it's a matter of loving yet firm persuasion met with screams, and thrown and/or spit out food, and so forth until the child is re-nourished enough to start to participate in the process.

Silber goes on to say,  "....The situation can become even more difficult to address once patients reach the age of majority." (p. 283)

This is the situation for the woman in Wales.  This is the situation for those entrenched in eating disorders.  This is the situation for my family member.

As he notes, the patient's entire team (if s/he is lucky enough to have one) may not reach agreement on how to proceed and often the decision must be taken on by another family member or a doctor or ultimately a judge.

To approach a decision, Silber proposes what he calls Justified Paternalism (JP) (p. 284 of the article published in Adoles Med State Art Rev. 2011;22(2):283-8,x.) and he believes that JP must be wise, meaning that one must realize one violates a moral rule and second that there must be a compelling reason.

He refers to two papers the conclusions of which are similar to Title 36 with the addition of "c)the person is likely to be thankful for the treatment at a later time,.... and "d)the intrusion is generalizable, in the sense that those supporting it would wish the same on themselves."

[I actually wonder if the judge read Silber's paper because it's so compelling in its pro and con positions, particularly in regards to eating disorders.]

He next discusses autonomy and society's drift towards leaving decisions to the patient.  He recognizes during this discussion that someone with an eating disorder is quite able to present pseudo competence, therefore meeting standards for competency as also outlined in Title 36.

Yet, as many of us in the trenches and as Silber then goes on to recognize, those with a starvation eating disorder aren't fully competent; their brains and their bodies have been compromised and will remain so until they are renourished and stabilized in that renourished state.  He also recognizes the supreme importance of involvement of the patient's family and/or social network -- the team that Dr. Janet Treasure and others advocate.

Silber presents research that underscores his arguments and also highlights the difficulty of working with teenagers and more particularly adults, and closes his paper with an emphasis on values and the importance of how the person perceives herself/himself to be respected during the treatment process.  In other words, as he writes, "....At the end it is always values that underlie and strengthen the good work.  These include fundamental respect for the person, even as liberty is restricted; beneficence; and truth telling." (p. 286)

I have heard parents say that they and their family member(s)  are regarded as "less than"  in these kinds of settings and a balance must be found so that all concerned believe they are participating in the effort to help their family member recover.  Silber speaks to this important need.

Silber concludes, and I hope that the prolonged treatment the judge has ordered for the young woman in Wales and for others remanded to treatment evolves into, "....Treatment interventions for eating disorders need to include not only the biopsychoscocial and spiritual components that have enriched the field over the years, but also need to incorporate a philosophical dimension that takes into account a reflective understanding of patient autonomy; patients' rights; obligation to protect; respect for persons; right to treatment refusal; and, last but not least, justified paternalism and an expanded concept of autonomy." (p.287)

In closing, I want to thank the author known as Extra Long Tail and Laura Collins for their recent posts.  The information provided I am sure, with dissemination, will improve the care of others who have starvation eating disorders, a term that I came across last night in a book by Doreen A. Samelson, ED.D., MSCP titled Feeding the Starving Mind (New Harbinger Publications, Inc., 2009).

BPD and ED - a view from the trenches by Evelyn Sharnov in Psychology Today

Warning:  as I write below, this links to a very powerful and potentially triggering article.  The thing is, it's real.

Powerful and very real is this story - In Extremis Part One - by Evelyn Sharnov that was just posted on  the Psychology Today website blog.

Here's the link if the above highlighted title link doesn't work.
http://www.psychologytoday.com/blog/notes-the-frontline/201206/in-extremis-part-one

I want to highlight two very important points:

First, that she acknowledges what so many baffled parents have struggled with:

"A borderline personality disorder sometimes forms in response to triggers like abuse or abandonment, real or perceived—but not always. The origins of the disorder are a mystery at its core."

And, second, that this illness is treatable and must be addressed as soon as possible for the person affected.

An excellent book just out is by Francis Mark Mondimore, M.D. and Patrick Kelly, M.D. titled Borderline Personality Disorder:  New Reasons for Hope (A Johns Hopkins Press Health Book, 2011).

I reviewed this extremely informative book here.

I know it's hard to hang in there with someone who is fighting this what I believe at its basis is a  biological brain disorder.  And, as illustrated in the story, Annie also has an eating disorder - a common combination.  But as Laura Collins relates in her talk  - powerful with terrific visuals to accompany the text - she presented at the International Conference on Eating Disorders in Austin this past May 2012, we must not forget that, again, these are biologically based illnesses of the brain and not willful behaviors and for that reason the people who are overwhelmed by these illnesses need our help, not our abandonment nor our disdain.

Eating Disorders Coalition Announcement re Funding for Federally Financed Health Research

News like this is so darned exciting!  The ongoing work of the Eating Disorders Coalition is vital.
From an email alert I just received from the EDC ( eatingdisorderscoalition.org )

"Eating Disorders Coalition Wins Big for Eating Disorders Research

Monday, June 18, 2012

Last week, the Senate Appropriations Committee agreed to FY 2013 funding for federally financed health research. Under the leadership of the Eating Disorders Coalition for Research, Policy and Action (EDC), the funding bill contains a congressional directive "urging the National Institute of Health (NIH) to expand, intensify, and coordinate its research on eating disorders and to examine the possibility of creating collaborative consortia on eating disorders research". This initiative holds out the prospect of attaining two key EDC goals: the first is greater attention to and the coordination of eating disorders research across nine National Institutes of Health who possess active research portfolios in this area; the second is increased support for federal Centers of Excellence in eating disorders research at academic medical centers and universities in the United States. The EDC drew inspiration for this breakthrough initiative from the research sections of the House and Senate Federal Response to Eliminate Eating Disorders Act (the FREED Act).

In short, the EDC is committed to an aggressive strategy intended to achieve key policy goals in Washington, D.C. through available legislative and regulatory vehicles. The EDC has excellent relationships with senior officials at NIMH who we anticipate will be key players in implementing this critical congressional initiative."

Our Body's Microbial Garden

I took the title of this post from the title of an article written by Carl Zimmer that appears in today's New York Times (Tuesday, June 19, 2012, pp. D1-6) titled Tending the Body's Microbial Garden.   We can either nurture or interfere with the balance of our microbiome, a collection of apparently "....100 trillion microbes that call us home."

Just last week, the mail brought me the most recent issue of Scientific American Mind (July/August 2012).  The cover advertises that inside I'll find information about Gut Microbes Influence Moods.  Moheb Costandi, author of the article "Microbes on Your Mind"writes about, among other topics, the existence of the enteric nervous system found in the intestines that communicates - actually the neurons in the intestines communicate - with the neurons in the brain through the vagus nerve.  He notes that "by the age of three the gut contains a full complement of approximately 100 trillion microbes...."  (p. 34).

Fascinating.  Think about the presence of receptors for the neurotransmitter serotonin in the gut.  Serotonin manufacture in the brain.  Does the human body in partnership with these microbes create neurotransmitters?  Help the body maintain a healthy balance of these neurotransmitters?

Recently I bought but have not yet completed Sebastian Seung's book Connectome - How the Brain's Wiring Makes Us Who We are (Houghton Mifflin Harcourt, 2012).  Just the brain's wiring?  Something else?

Whoa!  What's going on here?  As I've learned recently at a NEDA conference from those who are doing research into eating disorders, outcomes often take 20 years to reach the public press let alone those who treat us.    Science fiction?  Fact?  Possibility? Ridiculous?

Can we shape our biome?

Our children's biome?  The answer is, in fact, "yes".  Mothers do help shape their children's biome.

Want to learn more about this?  Listen to the recent TED lecture by Jonathan Eisen titled Meet Your Microbes.

Thinking about Dr. Eisen's lecture, Will we someday be able to buy a probiotic drink like those now found in the supermarket or take a pill from a bottle bought off the shelf at the pharmacy and change what's going on biochemically or neurologically in our bodies?  I know we already can but this takes this process to another level.  Perhaps we are doing that already based on recent small clinical trials in France and Ireland that examined the antianxiety effects of probiotics.

All of this sure is interesting and with the availability of online data, shared data, grant-making bodies like the NIH that publish the data, and so forth, hopefully larger and larger strides will be made to uncover and treat illnesses like diabetes, eating disorders, autism, anxiety disorders, schizophrenia, bi-polar disorder and even the common cold, something I picked up on my recent trip.

1 in 20 A Symbol of Action and of Hope

Last November's F.E.A.S.T. symposium in Virginia incorporated discussions about how to draw attention to eating disorders in an educational rather than a sensationalistic manner.


We were all fortunate to hear, on day one of the two-day conference,  Dr. Ruth Sullivan of the Autism Society of America speak about her work to bring autism front and center. 

Dr. Sullivan then joined Darcy Gruttadaro, Director of the NAMI Child and Adolescent Action Center, in a discussion moderated by Kitty Westin of the Emily Program.  Some of the points that were highlighted in the discussion included:

• work to avoid infighting
• define common ground
• take a stand
• obtain training through, e.g., the Eating Disorder Coalition on how to influence Congress and other federal agencies
• contact state and national legislators
• ask for what you want and work with other ED organizations to say it in the same way
• involve celebrities (Dustin Hoffman, Rainman (autism) and Glenn Close, Bring Change to Mind
• develop a forceful and attention getting PSA
• continue to research the data and the science
• demand better quality of care
• invite legislators to meetings, to breakfast
• work to agree to disagree and still talk
• respect the dignity of others

Carrie Arnold has independently and creatively acted upon one of the suggestions (develop a forceful and attention-getting PSA) further by starting a project called 1 in 20.    You can read about it here.  In response to the comments to her post, Carrie then went on to write a second post titled "1 in 20: the Life Threatening Bit"

Kudos to Carrie! 

Parents - Building Our Own Toolboxes and Help for Our Loved Ones As Well (continued)

I've posted before on the topic of taking care of ourselves.

Today I found this link when I was exploring the F.E.A.S.T. page on Facebook.  

So many of us can get overwhelmed by being an advocate for our loved ones.  Yoga can be one of those tools in the toolbox labeled "taking care of ourselves". 

 Earlier this Spring I attended a weekend conference on brain disorders that included a session about Yoga and Depression.  I added it to my schedule and received a hands-on so to speak hour of self-care techniques.

The speaker of the session, Amy Weintraub,  teaches yoga for depression and, as well, has written a book by the same title. Here's her website: 

We all use different tools, I suspect, to help us gain the respite we need to carry on in the battle against the eating disorder, ranging from a cup of tea with a friend to a walk to a brief getaway. 

We can build resilience, too, by following simple techniques and making them habits such as getting enough sleep, eating well (meaning good nutrition), aerobic exercise (did you know that the hippocampus and amygdala in our brain have been found to shrink under stress while aerobic exercise provides oxygen and speeds nutrients to these areas to counteract this effect); broadening our perspectives re an issue so we stay away from "victimhood"; reaching out; and establishing a tried and true support system (identified and nurtured meaning to give while one asks to get).  

I just attended a workshop on resilience and came away with a lot of good information.  I just learned that the speakers - Dr. Callahan and Dr. Marks of the local VA Hospital in Tucson - have  incorporated this information and much more, including exercises and journal assignments, into an easy to use manual for those of us who need this skill - to be published shortly.  The research background that led to this workshop is fascinating, too!    The link I just provided calls for the development of what the author of the piece, Nancy Stek, calls "Stress Hardiness."  

The skills are being taught to returning veterans with PTSD and even to college students in a one-credit course at the University of Arizona - A ED 210, Resilience and Human Potential.   Certainly these skills can be modified to be taught to a wide range of audiences - from children in tough home situations to students entering college to those signing up to serve in our military to parents of loved ones who are seriously ill to those beginning the path to recovery from an eating disorder.

Adding a P.S. here on June 3.  The New York Times Sunday Review, section (p. 6) includes a two-page spread titled "My Brilliant Career."  Olympia J. Snowe (Senator from Maine, a moderate Republican and a hero in my book for some time) mentions one of the key points I heard at the workshop:  "....it reminded me once again that it is possible to distill triumph from adversity.  Because it's not a question of whether you will encounter difficulties in life; it's really a question of how you confront them."

We build our own tool boxes, don't we.  So necessary!

Using the brain to treat the brain

I still remember the first time I saw the movie "Carrie"  For years, I have been skeptical about a human's ability to direct her/his brain power to accomplish telekinesis.  However, recently more and more articles have been appearing about the brain's ability to do something similar as research delves into finding ways for those severely wounded to use their artificial limbs more productively.

What if a person could turn that brain power into a healing energy source for themselves?  What if, indeed, a person could be taught to use their brain power to treat their eating disorder behaviors or better yet what lies behind that behavior?

Imagine if  a servicewoman or man, who returns from combat with PTSD, could use this technology to eventually retrain their brain to heal.

I don't think this is so far-fetched since for at least five years I've been reading reports and studies that illustrate how a person can train themselves to go to thought B rather than thought A in order to interrupt a harmful behavior.  I began to pay more attention to this idea while taking NAMI's free 12-week Family to Family Course back in 2007 when I learned about work done in addiction studies that was being applied to brain disorders.

So now comes news of companies in San Jose - NeuroSky - and San Francisco - Emotiv Systems, Inc. - which offer headsets and software designed to "empower" users to do things like control a computer with their thoughts or play a game called "Mind Labyrinth" "....which grants players access to 52 different levels of an ancient temple as their relaxation grows deeper."

You can find more information in an article that appears in today's (Tuesday, May 29, 2012) Wall Street Journal in Section B, pp. 1-5.

This news is very exciting.  There are, according to the article, "1,700 developers working with NeuroSky's technology, .... making mindcontrolled computer games for the company's $129 MindWave Mobile headset."  Others believe that these games will further the efforts to improve mental health.

This will take time, of course, and one needs to be wary of a silver bullet approach.  But what a possibility!!!!

Random thoughts about eating disorders and their treatment

Carrie Arnold's recent post The Eating Disorder World's Dirty Little Secret in which she states, "We have absolutely no idea how to treat an eating disorder" got me thinking about eating disorders.  Random questions came to mind as I sat here at my computer.

I thought I'd simply post them here and add to them when and if  (if I can remember!) an additional thought comes to mind while out hiking. Any other comments are always welcome.  This is a living document (since I've already changed it after posting it a few minutes ago!)  I'm not looking for answers so much as following a train of thought to see where it goes.

And, having asked the questions below, and thinking about Carrie's post, one must also consider the person one is treating.  So, it would seem that treating an eating disorder is very complicated.

And, having just read an excellent summary of things to consider/perspectives when treating an individual in the book Borderline Personality Disorder: New Reasons for Hope by Francis Mark Mondimore, MD, and Patrick Kelly, MD (Johns Hopkins University Press, 2011) reviewed here,  I thought these were relevant to the "equation" (from page 40, Table 3.1 The perspectives of psychiatry) as well:

The disease perspective considers:   what the patient has.
The dimensional perspective considers:  who the patient is.
The behavioral perspective considers:  what the patient does
The life story perspective considers:  what the patient encounters.

 There appear to be many varieties of an eating disorder.

Does each one have a different "cause"?

Is an eating disorder the outward appearance or symptom of an inner state of mind?

Does one treat an eating disorder or does one treat the inner state of mind?


Did the change in the inner state of mind occur before the symptoms appeared?

What causes the change in the inner state of mind?

Is the new state of mind a result of physiological changes in the brain? What causes the physiological changes?

Are the physiological changes simply a result of genetically programmed events that occur in some people at a certain stage of physical development?

At what stage? At what age? Or, are there other factors (environmental, hormonal, chemical or a combination of all three of these) that exacerbate the development of these physiological changes?

What molecules are involved? Likely suspects along the way – oxytocin, estrogen, insulin, neurotransmitters e.g. SSRI’s, L-tryptophan, dopamine, GABA,  norepinephrine, ….. and others listed here. 

Where does the manufacture of these take place in the body?

What external food, etc. sources are needed to manufacture these?

Do fMRI's show a difference in the relevant areas of the brain between those who have an eating disorder and those who don't?

Are the differences (if any) due to the ED behaviors (starvation/chemical imbalances) or are the differences present from birth?

As a preventive measure, might one request an fMRI of the brain of offspring of a person who had/has an eating disorder before the ED might develop?

Given what Dr. Insel stated at the FEAST Conference in 2011, might ED's begin as early as 2 or 3 years old as now can be detected for those who go on to develop diabetes?

Is there a link between diabetes and ED's?

Book impression: Borderline Personality Disorder - New Reasons for Hope

As readers here know, in 2007 our family finally was provided with information that explained years of illness, sadness, and failed treatment.  Two psychiatrists at two different institutions diagnosed Borderline Personality Disorder (BPD) and gradually, since that diagnosis, so much has fallen into place.
  

Like many parents, I began to read and digest as much as I could about BPD and you'll find several books on this topic in the list of books I've provided here on my blog.  I've also written several posts on the topic.   Early on I came up against the same themes as many parents have when the myths about causes of autism and schizophrenia and now eating disorders were discussed.  As time has gone on, the term "biologically based" has been added to the framework.  Environment, I believe, is an important factor, too, if for no other reason than to support the concept of family education to assist the person with a diagnosis of BPD to get on the road to recovery.  I've written quite a bit about this concept as it relates to eating disorders and BPD on my blog, particularly under the topic of communication.

Randi Kreger's book, The Essential Family Guide to Borderline Personality Disorder:  New Tools and Techniques to Stop Walking on Eggshells (Hazeldon Press, 2008) was the first book to help me understand the ramifications of this diagnosis as well as what positive things I could do as a parent to help.

About a month ago, I came across a reference to a book published just last year (2011) by the Johns Hopkins University Press as part of the Johns Hopkins Press Health Book Series.  It's available in paperback, which is a wonderful decision on their part because the book is affordable for parents keen on learning more.  For that matter, it's also a valuable book for the person diagnosed with BPD, as an entire chapter is directed towards that person - "If You've Been Diagnosed" (pp. 215-228).

The book is Borderline Personality Disorder - New Reasons for Hope by Francis Mark Mondimore, M.D. and Patrick Kelly, M.D.

This extensive and grounded work incorporates the latest research about and treatment of this diagnosis (dx). The book is directed not only to the therapist but also to the person diagnosed with BPD as well as to those who are family members, friends and even employers and co-workers. 

The book is divided into four sections: Understanding the Problem including clinical discussion as well as "personality"; Causes - encompassing an enormous array of information from genetics to environment; Treatment, particularly with emphasis on the difficulties when a person has co-morbidities and the sometimes ineffectiveness of medication (some believe that medications are inappropriately administered and in fact, some like the benzodiazepines compound the problems inherent in addiction) under these circumstances while looking harder at the necessary therapeutic relationships and need for truly understanding this disorder; and finally How to Cope, How to Help - written for the person with the dx and for parents, partners, friends and co-workers. 

The chapter for the person with the dx is especially frank but also supportive with solutions, an approach that I liked very much, particularly the attitude that the person needs to engage, take responsibility, accept and commit.  The section titled, "Looking for Happiness in All the Wrong Places" offers (p. 226) "...a psychiatrist or psychotherapist cannot reveal to you the meaning of life, or tellyou why your life is worth living.....Treatment for borderline personality disorder can help you learn how to cope with setbacks and disappointments better, negotiate relationships more successfully, rein in impulsiveness, make peace with a traumatic past and put it behind you, and many other important skills and lessons.....But your happiness is your responsibility, just as it is for everyone else."

The authors emphasize that the tide is turning about the dx for the dx is now being called "the good prognosis diagnosis."  They promote the idea that the nomenclature is incorrect. Not only that, but they believe the nomenclature fosters the person with the dx to think something is inherently _wrong_ with them since the word "personality" conveys such a strong definition of self.

The authors include a section titled, "International and Cross-Cultural Considerations" that trounces what some have proposed as a dx only found in the United States.  Clearly there is more at work than just environment. 

The book, to me as a layperson, is very dense in the initial sections (meaning one needs to "chew" on what one is reading)  but well-written and includes a terrific definition with examples of "splitting", something I had a hard time understanding from previous books that I've read. 

The epilogue as well as the text emphasizes, given the complexity of this diagnosis -- meaning the many aspects of emotions and behaviors, that a team of professionals skilled in differing areas must be assembled to treat the person.  It's unlikely that one professional can because, as I've been told by several people now, one who treats this illness must receive ongoing support and counseling themselves to avoid being drawn into the whirlwind created. 

The authors "distill" the disorder by writing (p. 251),

"Borderline personality disorder develops when a child born with extremes of temperament and a biologically rooted difficulty managing emotions encounters a mismatched childhood environment. This mismatch may be quite subtle or quite pathological but is experienced by the child as inconsistent and unpredictable, leading her to develop a damaged sense of self and the expectation that others will continue to be inconsistent, unpredictable, and ultimately unreliable and abandoning. This in turn causes profound emptiness and hopelessness to dominate her emotional life. To cope with her emotional extremes, and her desperate and painful unhappiness, she develops self-destructive coping behaviors like addictions, eating disorders, and self-mutilation. Frequently, these individuals also suffer from biologically based mental illnesses that exacerbate all their other problems and prevent behavioral and psychological treatments from helping them.
....Borderline personality disorder results from an interaction of genetic and other biological factors, inborn temperament, and childhood experiences and is usually complicated by the development of abnormal behaviors and psychiatric illnesses. All these factors require therapeutic attention, often by different professionals using different approaches."
 

As I wrote above, I am encouraged by this new approach to this illness and enlightened by how important it is to bring therapists up to date on the treatment of this disorder (sounds familiar, I am sure, to those promoting a change in the way eating disorders are treated).  Valuable techniques are included for therapists.

I also was pleased to just come across (May 2013) this book review by the esteemed researcher in the field of BPD, Joel Paris, M.D., Professor of Psychiatry at McGill University in Montreal.  The review appears in Psychiatric Times, Volume 29 #4.

Finally, thanks to the Epilogue, I learned that this month (May) was established by the United States House of Representatives - unanimously - in 2008 as "Borderline Personality Disorder Awareness Month."  How fitting that I discovered and read this book this month.  How important it is to promote what the authors have assembled for our increased ability, as parents, to advocate for our loved one(s).

Marjie Ruth: Finding the Route to Recovery

I've deliberately stepped away from this blog for awhile to rest.  I was exhausted by the work involved not only in advocating for and supporting my beloved daughter, but also by the tension of worrying that her body and/or her will would finally give out before her team could put together a plan that set absolute boundaries this time over or under or around which she would not be able to go.  The goal was to provide her with a safe place so she could begin the work not only of re-gaining but also putting herself back together again.  She is there now.  In life there are no guarantees.  We do hope, though, that this path will give her another chance.

Here's Marjie Ruth's latest contribution....... She puts into words what I have struggled with for such a long time.

At bottom is the best soil to sow and grow something new again.

In that sense, hitting bottom, while extremely painful, is also the sowing ground.

~Anonymous

Dear Family & Friends of the Eating Disordered;

Perhaps one of the most difficult aspects of dealing with a loved one and their disorder/addiction/mental illness, is not simply in figuring out where to get help for them. While that can truly be a daunting task at times, especially as such treatment can often come with a hefty price tag, but once found we're faced with what in some cases seems to be the nearly impossible challenge of getting them to be willing to receive the help we're offering. How do you get someone in the grips of a disorder like anorexia or bulimia or alcoholism or drug abuse to buy into the idea of going to a treatment program or working with a therapist whose goal is to wrest the crutch out of their life--the crutch that they are so very sure is not only holding them up, but also holding them together to be able to function at all? We see their behavior as, at times, bordering on insanity. Yet we then ask that "insane" person to please listen to our rational and logical explanation of why they need to submit, and we even ask them to respond in a reasonable manner. Sorry to say, but that can be asking a lot of the "inmate"--that person so locked into the irrational world of an eating disorder or some other crippling addiction.

So, what are we to do? Some would counsel us to just walk away, to throw them out, to turn our back and let them sink or swim. "Just" you say? Why don't you ask me to "just" cut off my right arm? The advisor(s) in these instances may be well intended in that they relate more to us, the family & friends, than they do the disordered person. Their motivation is to help us survive the hell that the disease can inflict on those who are closest to its victim, and to not see us destroyed by the disease also. Unfortunately, such good intentions do little to help us and instead may only make us feel more alone in our certainty that others truly cannot comprehend the depths of our pain and a love that will not give up hope until life itself is gone.

But we are not alone. Others have gone through this same pain, and countless more, I am sorry to say, will have to tread a road they have no clue about...yet. So, how have others dealt with this same horror? What have they learned that can possibly come to our aid? All 12 step programs are founded on the same guiding principles which were developed through experience with addictions and are a compilation of work by various folks as articulated by William Wilson back in 1934, who is now referred to as Bill W. Interventions are staged with the assistance of trained and experienced therapists. Treatment programs have been established all over the country. Hundreds and hundreds of books have been written. Support groups surface. Survivors share. But the struggle goes on seemingly anew for each person, each family, each circle of friends dealing with a disorder.

What all of these programs and resources do have in common are a few very basic tenets that, I feel, are the touchstone that we can repeatedly refer to:

1. Recovery only truly happens when the person is ready to do it. The important work that family & friends can do is to learn how not to be an enabler, a co-dependent, a participant in the dysfunction.
2. No one can "do" or make recovery happen for another. We can make treatment and possibly recovery a possibility, but then we must step back and get out of their disease.
3. A person can get so far into a disorder/addiction that they get to a point where they cannot find their way out without (preferably professional) intervention. When an anorexic becomes malnourished, her brain simply does not function well enough to allow for any clarity of thought. An alcoholic or drug addict needs medical supervision to safely survive withdrawal from the substance abuse. The cycles of abuse can leverage such a tight grip, both physically and mentally, that interrupting the pattern in order to even start any kind of turn around may need medical intervention initially.
4. Setting strict boundaries with no backing down may be the only way to initiate necessary treatment. This is a frightening and painful experience not only for the person with the disorder, but also for those who care and must struggle to set the boundaries and then fight their own battle with their emotions in order to find the strength to keep them in place. Learning how to and where to set boundaries is our path, as family & friends, to healthier relationships and also models healthy functioning for our loved one.
5. There are no guarantees that recovery will happen, or that even if it does that it will stick (can you say "relapse"?). But it's a pretty darn good bet that enabling a disorder will insure that it continues to thrive, even while its host is slowly dying.
6. Recovery can and does happen. While are greatest fear is that it may not happen or hold for our loved one, we need to calm ourselves with the knowledge and hope that many, many folks have come back from the brink to live healthy fulfilling lives.
7. Recognizing, understanding and accepting these truths is possibly the best way we can continue to stay grounded in order to continue to cope with their disease while not contributing to it. We need to care for ourselves while being reminded that we did not cause it, we can not cure it, and we most certainly can not control it.

Thank you for reading. Please feel free to respond with any questions or thoughts, should you feel so motivated. Also feel free to share this email with anyone who might be interested. All I ask is that you include my name & info.

Marjie Ruth

727-244-9011 (c)

MarjieRuth1@gmail.com

sruth1@tampabay.rr.com

Guest Post by Marjie Ruth: Can You Be Here Now?

If I had a formula for bypassing trouble, I would not pass it round.

Trouble creates a capacity to handle it. I don't embrace trouble; that's as bad as treating it as an enemy.

But I do say meet it as a friend, for you'll see a lot of it and had better be on speaking terms with it.

~ Oliver Wendell Holmes

Dear Family & Friends of the Eating Disordered (ffed);

For those of you in the area, we will be having a support group meeting this Weds (3/28) at the Hyde Park Counseling Center at 7:00pm. All are welcome. Get there when you can and leave when you need to. The ABA 12-step meeting will also be happening at the same address, same time, different room.

If your a fan of musicals, you may be familiar with the famous tune from The Music Man when Professor Harold Hill sings about trouble..."Oh we got trouble. We're got terrible terrible trouble. Trouble with a capital T and that rhymes with P and that stands for Pool." There are many different ways to deal with problems in our lives. For those with an ED, learning to deal with life's troubles in a healthy way is the biggest challenge of all as it was the inability to handle emotional pain that devolved into the disorder and the continual fear of such pain that strengthens the dependence on the disorder. One of the coping mechanisms stressed in therapy is to stay in the moment. This means resisting the urge to repeat the habitually unhealthy patterns of the past and avoiding the anxiety trigger of looking ahead and projecting a future of fear. The client is encouraged to focus on the present, the here and now.

What I've found is that it's just as important for me to stay in the moment as it is for my loved one. While I'll admit to having absolutely no understanding of the theory of a space-time continuum (Go ahead, Google it & see if you can make any sense of it), I'd like to appropriate the term and give it my own definition. Please bear with me on this as the philosophy major within me of many years ago is about to make an appearance, but I do feel that the subtle nuances of what I'm going to present to you are worth pondering.

When we think about the past, present, and future, we generally tend to visualize them on a sort of time line or in a space-time continuum, if you will. While this is helpful for maintaining relationships between events (those in the past being on one end of the spectrum while future items are on the other), the shortfall of this type of thinking is that it tends to impute equal weight or veracity to both memories of the past and thoughts of the future. And this is a serious fallacy in that whatever is in the past, and this is not accounting for the inaccuracies of memory, are events and experiences that have the weight or value of having already been a present moment--of having actually happened and impacted our reality. On the other hand, anything that we are considering in the future is only a presumption at best, perhaps fanciful thinking at times, and an irrational fear at worst. The future does not yet exist except as a mental construct. We can project into the future and must and should of necessity do so. We are admonished to save for a rainy day as experience has taught us that there's a strong probability that we will have a need for such savings in the future--aka our present moments down the road.

Our past is important for we are inexorably shaped by it. We know that we learn from our past, that history is an important teacher best not ignored. We also know that we can be dogged and tormented by our past. The inability to let go of old hurts, of horrific memories can be damaging and even dangerous. The diagnosis of PTSD (post traumatic stress disorder) is often associated with folks who have lashed out to harm themselves and/or others as a result of the mental anguish they are experiencing from things that happened to them. Growth and development can be curtailed and even halted by the inability to deal with things in one's past. This can be an important component in some addictive behaviors. And the longer one remains entrenched in an addition, the more their past comes to be about the addiction as their life.

Our perspective on the future changes constantly throughout our lives. As a children we naturally tend to be more "present--in the moment" oriented. The younger the child, the less of a conscious, verbally constructed past they have. Everything is pretty much about the here and now. It's only as we grow that we learn to think more about the future, with a variation from culture to culture. In the US, we have a strongly future oriented society. There is great importance attached to where we're going and what we will be doing & getting. The future is generally touted as something that's full of promise. Someday I'll go away to college. Someday I'll be CEO & as rich as Bill Gates. Someday I may even be President. Someday I may get to retire and enjoy life. But many of us have also experienced a future full of tough questions and scary unknowns. Will anyone call and ask me to the prom? Will I be laid off from my job? What will the test results be? Will I ever be free of pain? But if we become obsessed with the future, we risk being labeled as a sci-fi freak or a worry wart or of being overwhelmed with the uncertainty of it.

Our goal in the present should be to strike a healthful balance between the past and the future in order that we might be fully engaged in the present. Appreciation for our personal as well as cultural history and an acceptance and resolution of past hurts can serve us well. And the more we accept ourselves and focus on the present, we can let go of anxiety over the future. There's a saying to the effect that it's called "the present" because it's a gift. And I see it as a gift that we pay forward: each moment in the here and now is shaping and building and becoming our future. So play this thought out...the future is, quite literally, only a figment of our imagination. If we are depressed, we will naturally tend to project that despondency as something that goes on and on. Our mindset is capable of producing a whole world of blues and troubles...terrible, terrible troubles. But that is only our present moment of sadness, of chemical imbalance, of habitually being mired in fear that produces such thoughts. Talk about the future with a Pollyanna personality, and the result will be full of anticipated happiness and "the sun will come out tomorrow" expectations. So who is right?

It's not a matter or right or wrong as neither can control or predict what doesn't yet exist. The future for each will result out of their present, and--like seeds--what is sown in the present will become our future. What that means for all of us is that maybe we've been members of the same club all along but just never looked at it this way. We're all in the FFA - Future Farmers of America, or more accurately--of the World. We are farming our own future. It doesn't mean we'll be attending 4H meetings and milking cows, but it does mean that we can choose to recognize the futility of being so fearful of and weighed down by anxiety over the future. If we take that same energy and channel it into living more fully in the moment, we will find ourselves a bit less overwhelmed and gradually learning to experience the present more fully, which is a very good thing. Not a one of us knows exactly how many moments we will have or have left. That's nothing new, but maybe a thought just newly grasped. That means that every moment is precious, a gift, a present, and full of potential. And it is in and through this present that we each, whether we accept & acknowledge responsibility or not, play a major part in shaping our future as it evolves moment by moment, right here--right now. Live this moment fully and well, and the future will take care of itself.

Nothing I've written here is a major revelation. It's more about a tweak in perspective that can make a difference in our ability to cope, both for us and for our loved ones.

The commercial asks,"Can you hear me now?"

What I'm asking is, "Can you be here, now?"

Marjie Ruth

727-244-9011 (c)

sruth1@tampabay.rr.com

marjieruth1@gmail.com

The Iron Will - both hers and mine

This essay by Amalia Negreponti was published on the internet in Huffpost Healthy Living two days ago (March 20, 2012).

Her essay is powerful and describes her experience with anorexia.  She also describes her own turning point.


From the essay and one of the reasons why, even in the face of some of the things my daughter says to her caregivers when she is speaking the anger of the ED that so wants to undermine and kill her, she needs love, understanding and support for her to pull her strength together to survive. She does have an iron will and a huge amount of fight in her.  How to call upon that iron will and fight to turn that disease around?

Amalia Negreponti's mother's thought at that time (see below) reflects the struggle that we, my daughter's family, have continued to experience while we have explored and implemented so many different paths available to her to give her a chance to survive.  My iron will not to give up.  Never to give up.  Where there is life, there is hope.

Time and time again my daughter has received one form of treatment or another in a variety of settings and time and time again upon release she has again been overwhelmed by her disease and returned to behaviors that have undermined her life.

"She's going to die, can't you see it?" My usually sweet and gentle yaya was fiercely telling my mother, in a reprimanding tone, "We need to get her to a hospital to be force-fed." "It'll be no use," my mother said, "She'll just stop eating as soon as she comes out of hospital and she won't trust us too. There is no chance she'll survive then. Now maybe we still have a chance to persuade her to eat. If we fail, we'll all die of course." She spoke in a matter-of-fact manner.

  ....I was appalled. My dynamic mother who never gave up, and my yaya, an epitome of rationality and understated chic-ness, would act like figures out of an ancient Greek tragedy all because I wouldn't eat!

Although I still thought my mother and yaya were over reacting to something not that important, I respected their desperation and felt a responsibility toward them because I now knew how much I was loved by them. I made a decision: I asked my mother to take me to my favorite pastry shop in Athens so I could eat one of its "signature" chocolate buns filled with cream. They were huge and I had once adored them.

We almost flew to the pastry shop. By midnight we were still there: myself laboriously still eating the bun and my mother applauding every bite I took, with tears of joy in her eyes. Eventually, I managed to finish it. Every bite was torture.

Every bite I took from then on was torture too. As I slowly, very slowly, grew healthier, I gained some weight. Although I was still too thin and I knew it, I could not sleep, in mortal fear that in gaining this weight and thus regaining my life, I would lose control of it. I would become "normal," therefore mortal, a woman.

In the meantime, I diligently trudged through what would amount to volumes, were it not on the internet, about my illness. I devoured myriad psychiatric papers and observations of actual "cases" which had been hospitalized. It was shocking how nearly all ended in death. Thanks to the web, I was able to heal mentally as well as emotionally. I entered many forums where both survivors, as well as people still battling the disease, were speaking candidly to one another about the disease. I read and I read and I read, until I read myself out of ever feeling so alone and vulnerable, that I would fall prey to this enemy, again.

I used the iron will and discipline anorexia had given me, to master myself. To become one of those who survived the illness. Who beat it. Every moment of my struggle was imbued with the knowledge that I was loved beyond reason by those I loved: my mother and grandmother -- my yaya, whose name lives on through me. Amalia.

We, my daughter's family and friends and team members, now pray that her current placement in a psychiatric institution will give her the opportunity to survive and yet in this first stage her co-occurring brain disorder and her amazing iron will are hampering that possibility. Would that somehow her Higher Power and she connect to start her on her recovery path and that her team there construct the best possible protocol to give her that chance.

Time will tell.  One step at a time.