"Their Battle for Their Recovery"

The arrival yesterday in my mailbox of Marjie Ruth's latest post could not have been more timely.  As usual, I remind readers here that my posts are directed towards family members and friends of adults with eating disorders.  As a friend of mine has said many times, we can shine a light on the path and on the opportunities yet ultimately the decision, as Carolyn Costin writes, to get on the path to recovery is up to the person with the eating disorder.  I often say I am an ally but, in fact, I am not the warrior.    Here's Marjie's latest post including their meeting information in case a reader is from the Tampa area and wants to take advantage of the meeting offered:

No one can make you get better.

 The battle for recovery is not between you and me.

 It's not between your eating disorder and anyone else.

 The battle you have to fight to get better is inside of you.

 The battle you have to fight is between your healthy self and your eating disordered self. 

~Carolyn Costin

Dear Family & Friends of the Eating Disordered (ffed)

Summertime is upon us and that means that vacation season is now in full swing. So please let me know if you're planning to attend this week's meeting at 7:00 PM on Tuesday (June 3rd) in Tampa at the Hyde Park Counseling Center on Verne Street in Tampa. Everyone is welcome. The ABA 12-step meeting for those battling a disorder will be meeting at the same time, same place. If you need driving directions, go to www.HydeParkCenter.com. All are welcome. The only cost is the time and energy it takes for you to get there!! Trust me: it's well worth that price. 

This week's quote is by Carolyn Costin rings so true because it is penned by a person who speaks from personal experience as she is recovered from a serious eating disorder. Carolyn not only has fought the tough battle and won, but also she has gone on to become a highly credentialed treating professional and opened her own eating disorder treatment program which has now expanded to 8 locations (MonteNido.com). She has also authored eight very well received books, including Your Dieting Daughter and The Eating Disorder Sourcebook.

And why have I chosen this quote which was obviously directed at someone with an eating disorder, as opposed to a caring family member or other loved one? Because I think what Carolyn has said makes a powerful statement to us about where we stand in the battle our loved one is in with an eating disorder. So, from the start, please note that we aren't in a battle with our loved one's ED. We might be having constant wars with our own emotions as we struggle to handle the upset that comes our way because of the presence of the eating disorder in the life of someone we care about. But we are named "No one" in this quote because:

"No one (that's you & me) can make you (your loved one) get better."

Try as we might, it's beyond our power. And any sustained effort we might exert to try to force the issue, is more than likely to back fire and only make things worse. 

"The battle for recovery is not between you and me."

...it only feels that way. The more involved we are in trying to orchestrate their recovery, the more we become the target for their emotional outbursts. Some of it is because of the struggle for control. ED's are all about your loved one's personal struggle to cope with frightening or unsettling emotions. It's all about control, however false that sense of control might be. When we set up an emotional tug-of-war in which nobody wins.

Because the battle that needs to be fought is within the person and against their disorder, our task is to discern where we may have crossed over a healthy line and to figure out how to extricate ourselves from the melee. That usually means discontinuing any enabling actions on our part and disengaging from any co-dependent behaviors. It may not seem like enough, but steps like these go a very long way in helping to clear the way for a more healthy perceptions for all, which is fertile ground for real healing.

Whether you've only recently discovered that your loved one is dealing with an eating disorder or the war is an old one with significant recovery or perhaps it's a relapse that has your world spinning out of control, figuring our just where your place is in the "conflict" is a vital step. Knowing and accepting that you are not the person in any way in charge of, responsible for, in control of, or able to resolve your loved one's ED is a huge step for both you and your loved one. 

And even if you had learned this lesson previously but needed a refresher, this quote is the admonition for you!!

Marjie Ruth

727-244-9011 (c)

sruth1@tampabay.rr.com

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

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.

Aimee Liu - Restoring Our Bodies, Reclaiming Our Lives: Guidance and Reflections on Recovery from Eating Disorders

One of my favorite books is edited by Aimee Liu and the title is Restoring our bodies, reclaiming our lives: Guidance and Reflections on Recovery from Eating Disorders.

Here is a link to more information about the book.

The foreword is written by Judith Banker, past president of the Academy for Eating Disorders (AED) - the underwriter of the wonderful new booklet for doctors and laypeople alike found here: 

I'm going to quote from the Foreword.

"Not one patient I've ever treated for an eating disorder believed at the outset of treatment that she or he was capable of recovering. Not a single one could imagine being free of the relentless obsessing, the perpetual weight-loss algorithms, the self-loathing, shame or despair that accompany these excruciatingly complex and devastating illnesses."

"....In Restoring Our Bodies, Reclaiming Our Lives Aimee again joins the wisdom of personal experience and the knowledge of research and clinical experts to provide a keenly illuminating, in-depth journey in the recovery process....[This book] forges new ground by walking the reader through the entire recovery process, from the initial turning points at the start of the odyssey to the 'wise minds' that reflect on the experience of reclaiming one's life after an eating disorder." 

The review on Amazon to which I provided the link above states, "Author Aimee Liu has woven together dozens of first-person accounts of recovery to create a break-through roadmap for healing from an eating disorder. Restoring Our Bodies, Reclaiming Our Lives answers key questions including: How does healing begin? What does it feel like? What supports and accelerates it? Will I ever be free of worry about a relapse?

Throughout the book are informative sidebars written by leading professionals in the field, addressing essential topics such as finding the right therapist, the use of medications, exploring complementary treatments, and how family members can help"

I bring this here because already in the commentary response to Dr. Ravin's post titled "Got Hope?" and in blogs like those of Extra Long Tail, Giant Fossilized Armadillo, and Ed-Bites (all shown as blogs I follow, found on the right hand side of this site), people are sharing their own experiences and paths to recovery - what works and what doesn't. An admirable thing, indeed.

For example, Extra Long Tail responds to Dr. Ravin's post (and touches on the points noted in the Foreword to Aimee Liu's book):


I had a relapsing course of restricting anorexia nervosa (AN) for 28 years before receiving any help that was of use. During those 28 years I remained significantly underweight (sometimes dangerously so – i.e. BMI < 13) and as time wore on, my physical state became increasingly compromised. I was 'treated' for some of the physical complications of long-term semi-starvation, yet a number of medical professionals deemed me 'chronic', or stated that I would only get better "when I decided to". 

There was no way that I could get better on my own…. It was not that I didn't know what to eat to gain weight; it was that I didn't know HOW to eat more food without feeling panic-stricken. That level of panic was so great at times that I felt suicidal. And it was not 'about' body image. AN in anxiolytic. 

The key to recovery from long-term AN is de-sensitisation to the panic associated with eating and weight restoration. I have had therapy too, which has been enormously helpful, but therapy without weight gain is pointless.

[***And here is an article about the relationship of anxiety to eating disorders, especially anorexia, published late in 2010 in the European Eating Disorders Review.]

[***And here is a link to an article  by Dr. Janet Treasure and colleagues titled "Eating in Eating Disorders"  with the goal of the importance of eating/supported eating back "into the centre of the eating disorder discourse" that includes a wonderful compilation of knowledge to date.]

We can all learn from them.  I know I can, too, because although I am in recovery from bulimia, my path and my make-up have been/are unique in many ways.  Some things worked for me that might not work for others but other things may.  The more we can read what has been written and presented by those in recovery, the broader an understanding we can gain and the more knowledge there is out there to help therapists, psychiatrists, nutritionists, parents, friends and the person fighting the eating disorder.  

There needs to be more of this and more reaching out to those who fear they are forever entrenched so they, too, can get on the path.

As I've said before, the path is wide. There is room to fall down and get up again. The key is to get up again.

Guest Post by Marjie Ruth - Our Role in Their Recovery

Guest Post by Marjie Ruth - Choice

"We choose to be healthy; we choose joy; we choose happiness. These are all choices we make when we have the power to choose. But in order to feel that power, we have to learn what it means to love ourselves."     
~Angela Passidomo Trafford

For those of you who have been to a support group meeting or have been reading these emails for a while, you know that certain "C" words are very important in our struggle to deal with an eating disorder in the life of a daughter or son, a wife, or a friend. The list started out with 3 words describing our relationship with the addictive behavior of a loved one.

#1 - You did not Cause the addiction.
#2 - You cannot Control the addictive person, their behavior, or their addiction.
#3 - You cannot Cure their addiction.

This was our starting point and a lot of emotional information to handle. Through experience and learning from one another, we have added 2 more words.

#4 - You can learn how to Cope with the person and their addiction.
#5 - And you can learn how not to Contribute to the behavior.

(If you would like more to read about any of these very important points, hang on as future emails will deal with each point more in depth.)

And now for a sixth word to add to the list.

#6 - You can grow in your understanding of the role of Choice in the life of the addicted as well as in your own life.

This word, Choice, is like a recurring melody in my own life as it seems to come up in so many contexts again and again. Back in my college days as a philosophy major, I was quite taken with the existentialists who--surprise, surprise--emphasize the power & role of personal choice in our lives. Camus, Sartre, and others express frustration with how unable or unwilling most people are to embrace this notion. Choice is viewed as personal empowerment.

But what Angela Trafford (see opening quote above) is emphasizing, is that before we can even begin to appreciate our own power to choose, we must first come to know, understand, and accept ourselves for who we are. Basic psychology emphasizes the importance of a healthy self esteem if an individual is to grow and prosper emotionally. Without a healthy degree of self appreciation, it is nearly impossible for us to love ourselves. And this is a core concern of the therapy that deals with eating disorders. The disorder is a symptom of a severely wounded psyche, one that is suffering to such a point that the pain of it makes the world seem almost too difficult to handle and so much so as to leave its victim feeling powerless. Hence, there is a sense of relief (however misplaced) that comes from the illusion of power restored through the dietary abuses of the disorder. "I can  experience the  pleasure of  unbridled binging while eliminating the fear of weight gain," thinks the bulimic. "I can resist the calories and have gestapo-like control over what goes in my body and ultimately I can change my body and even make it disappear if I choose," thinks the anorexic. What begins as a choice to try on power for size, ends up as an addiction with the controller becoming the controlled. What seemed a way out of a painful prison, becomes a trap of unparalleled proportion. It is as if they experience thinking that they've found a way out of mere detention, only to find themselves in a concentration camp--a metaphor with all too many parallels to the anorexic in particular.

The hope is that with the therapist as guide, the disordered person will be able to slowly and painfully begin to take down the walls of the camp through the process of recognizing and healing past hurts, rebuilding an ailing self esteem, and developing a voice that is one of strength and self integrity. This voice of recovery will have the courage and self compassion to make choices that are healthier and more likely to lead to happiness. The pain did not occur all in an instant. The damage was done probably less like that of a hurricane (a single traumatic event) and more like the relentless toll of tides and waves on a small wooden dock (the persistent and cumulative effect of life's daily harsh and sometimes toxic social environment on fragile and sensitive psyches). The damage we see--the visible weight loss, the evidence of binging and purging, the social withdrawal--is the outward manifestation of pain that has been present inside for a lot longer.

Getting help is the important first step in recovery. (Technically, being willing to get help is the first step with finding help being the first hurdle.) Patience and perseverance are the next. And along with this comes the necessity of choice. Each sufferer of an addiction must ultimately make a choice for life, a choice to recover. And along with that singularly pivotal choice comes a barrage of individual choices that must be made constantly, each step of the way in order to support and facilitate that choice to fight for recovery. Every single day, involves a multitude of complex and difficult choices. A million times over one must choose to eat and to eat wisely and healthfully. While it sounds so simple to us, it is a monumental task, especially in the beginning, as with each bite of every meal there is a struggle against the full force of the disorder which has quite literally taken over the brain. A thousand times over the addict must choose to be honest with self, therapist, and family. Endlessly they must choose to resist giving in to the thoughts in their head that distort self image so radically. Every minute that they are awake a fight must ensue to keep strong against thoughts that tear at their fragile self worth, only to find that even when sleeping too often dreams are nightmares that torment and rob them of needed rest while requiring still more recovery upon wakening. And always they must keep on choosing a painful recovery...keep on choosing life.

The good news is that for every time the choice is made for recovery--honestly and without compromise--it strengthens and heals the inner self. The world around will not be changed by it, but the person's ability to deal with the world, with life, and even their own reactions to the world will be changed. The eventual result, if they can continue choosing recovery, will be a person who is no longer beaten down by the tide, but instead can find pleasure in surfing the waves.

Marjie Ruth
727-244-9011 (cell)
sruth1@tampabay.rr.com
MarjieRuth1@gmail.com

As always, feel free to pass this email on to anyone who might be the least bit interested. Just be sure to include my name at the end so that they will know who takes responsibility for all that's written here and whom to contact if they should feel the need. Thank you.

Is your child leaving for college?

Several of us who have posted regularly to the parent's bulletin board on Something Fishy advocate for the delay of going away from home to college when a soon to be adult child is in the throes of an eating disorder.

Dr. Sarah Ravin wrote an important piece about this on her blog on August 25, 2011.

Http://www.blog.drsarahravin.com

Dr. Ravin's blog is a terrific resource!

More on Responsibility

I have spent a lot of time this week thinking about responsibility, particularly in terms of what's mine and what's not.  Consequently, when Marjie Ruth's post arrived in my email box earlier this week, the timing was perfect.  Not only that, but this topic rose again during a conversation among a group of women on Thursday and yet again this morning at my meeting.

While reading Marjie's post, which is here on my blog,  I especially focused on the sentence I highlighted, which was: 

" ....For us, we may want success so badly for our loved one that we usurp their responsibilities."

I realized through a lot of work with my therapist these last two years and by listening to others dear to me and by listening to the experience, strength and hope of still others, that I usurped my daughter's responsibilities in many areas of her life.  I also know that others usurped her responsibilities, too.  I did not want her to be hurt.  I did not want her to continue to be ill and to decline.  I did not want her to die.  Of course not.  But I extended my reach into her world so much these past several years that she didn't have to face reality on several fronts to figure out what to do to fix things herself. 

Marjie wrote:

While parents readily desire to provide an environment for their children that will foster their success, they sometimes can't seem to bear having their offspring deal with failure. It's with good intentions that they'll jump in to avert an impending negative outcome from a misguided sense of helping. When they step in to rescue their child from the consequences of his or her own inappropriate actions, they're often teaching them that they can get away with it...that they're not subject to society's rules. Such actions engender a moral lack of personal responsibility, hardly the intended outcome but a very real one nonetheless. 

Wow, the above paragraph strikes home for me, too.  There were times when I was able to step back and see the bigger picture and draw everyone who interacted into that picture to understand what was going on.  But more recently, I took myself over my own edge by somehow believing that I could change what was going on.  In fact, I certainly could contribute to the possibility of that change, but not actually change the situation.  That's what I had to learn.   That is truly up to her.

I continue to need to be reminded that I, as Marjie wrote,

.... all too often jump in to do it for our loved ones with the hope of getting them to a happy place more easily. And this, folks, is called enabling--doing something for someone else that they can and should be doing for themselves. When we help someone else circumvent accepting personal responsibility--when we make excuses for them, lie for them, do their work for them--we may actually be doing more harm than good by derailing that person's emotional growth. 

I did this, too.  I thought I was helping.  In fact, I was enabling.  Sure did take me a long time to finally "get" this:

Helping occurs when we do something for someone that they are incapable of doing for themselves. We feed and cloth a baby. We guide the blind person through traffic. We assist the elderly with housekeeping. The problem occurs when we are unable or unwilling to discern the difference between enabling and helping. And it is a problem because, ultimately, recovery is about accepting personal responsibility. 

No doctor, no therapist, no hospital, no residential treatment program can make an eating disordered individual well. They can support a person in their striving. They can offer training and tools that can be used by the person to recover. They can even point out they way. But in the end...or should I say, the beginning, because real recovery only begins and happens when the ED sufferer accepts the reality of their addiction and accepts personal responsibility for the tough road that is recovery. Successful recovery only comes with a price that entails many failures along the way. That is learning. That is growth. You may walk beside someone, but you can't walk for someone on the recovery road.

The most difficult step for me now is to simply walk beside her.  Yesterday I handed over a very important (to me) article that was published in Scientific American  (June/July 2008, pp. 60-67) by Trisha Gura titled, "Addicted to Starvation."

Many parents, including myself, have been to Family Week at residential facilities where we've been reminded that it's one thing to be able to recover from an addiction to substances like drugs and alcohol by abstaining and working, for example, a 12-Step Program but quite another to recover from an eating disorder when one needs to eat to live.  

The piece that must be reflected upon by many people is, I believe, that these illnesses are addictions that are evidenced by extreme disordered eating.  In the case of anorexia, the addiction is to the sensation of starvation.  How else can one starve oneself if not for some kind of reward, if only the reduction in anxiety that comes from eating?  How else does self-preservation fall by the wayside?  To put it simply, the person's brain sends a message that starvation is "feels good or at least better" and eating is "bad."  There are complicated explanations for this and more research is continuing in hopes of figuring out how and why.

Meanwhile, it seems to me, that the goal of the person who has chosen to live and fight (once they have been re-nourished enough to understand where they are and/or have reached a spot in their decline where their alarm bells are still going off) is to learn to immediately switch thoughts when they start to eat from "this is bad for me or feels terrible" (whatever form that thought takes) to "this is good for me.  I love myself.  I need to eat to show my love for myself.  I am worth it."

Getting to this internal language is hard.  It involves practice and practice and practice and repetition until the thought totally replaces the thoughts that are so harmful.  The voice of one so many of us call  ED.    Yet it can be done.  Although we read the alarming statistic (that may no longer be true and rather a myth because of lacking up-to-date information and better treatment modalities), the known statement is 80 percent survive these illnesses and 20 percent die.  The more we all know the more we can all work together in some role to increase that success rate.

My responsibility is to continue to shine the light and to love her, which I do.  So much.

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.

Thoughts about running and being....healthy

Reading a post by Carrie on her Ed Bites blog about mind vs body and then seeing a graphic portrait of a skeleton running on a treadmill published by CBS the other day (I am not going to link to it as I was shocked by it), reminded me of all the times one of my adult children admonished me for continuing to buy my loved one a pair of running shoes as one present for Christmas and another for birthday. I just didn't "get it."

My epiphany on this issue came one or two months ago when I realized that I was an enabler by providing the shoes.  After all, my loved one loves to run and go on long walk-abouts, as we call them.  I figured (incorrectly; see most recent post) that my loved one was running for the exact reasons that I love to run and now walk.  Actually, I am sure that part of her does for the very reasons I do -- incorporating what can be a healthy habit into one's day to get some fresh air and sunshine as well as to get the heart going, the lungs expanding, the hormonal systems moving, etc.

But running came into our lives differently. 

As I've written here on my blog, my parents always encouraged sports and outdoor activities.  We lived overseas in the tropics/subtropics for most of my growing up so outdoor sports happened year round.  Sports was a part of my life and part of my during school hours life, too.  I raised my children the same way.  Living in Tucson with its wonderful year round weather helps that. 

But I did not "discover" long distance running until I saw a friend of mine running around the neighborhood and asked her a few questions about it.  I learned that it was an activity I could pursue early in the morning before my children woke up and needed to get ready for school.  I came to love it very quickly for reasons I've also written about.  But, for me, most importantly I wanted to keep doing it and I realized that to do so, I needed to be smart about it.  Having a medical background (nursing student) and a keen interest in physiology helped me realize I needed to eat well.  I also had just begun my own recovery from bulimia and soon learned that putting a few more pounds on did wonders for me in terms of strength and in terms of fighting my frequent bouts with bronchitis.  In fact, I learned as time went on that as soon as I went under what was still a very healthy weight for me (this happened when I was stressed), I'd get sick with bronchitis or a cold.  It was my body's warning system going into action and I heeded it.  My doctor was very happy about the change, too, and encouraged me to aim for a weight that he felt was even healthier.  I did that. And, I felt even better.

My loved one, however, was introduced to running while very young - nine years old.  Running became a part of her life which I thought was a good thing.  However, as she reached her mid-teens, exercise became one of the ways she dealt with anxiety and later assisted her along into anorexia.  She continues to use it as a tool to keep herself there or get herself back there.  She also incorporated what we called the walk-abouts.  These were very long walks around town to avoid binging and purging and other behaviors.

Each time she has been released from a residential facility or hospital, she has returned to running/walking even when her electrolytes were horribly skewed and/or her weight was low enough that she reported people would yell out their car window at her to "gain some weight."  She would come home very upset by these remarks yet could not connect the dots to see why others were reacting to her physical looks.  She just didn't see it. 

Now I have gotten beyond my denial to understand that she is incapable, at this point, of using running for just a healthy purpose.  She still craves it.  One of her hurdles will be to understand the difference.  My role  is to set a boundary by not purchasing her running shoes and by standing firm with her team and asking her to not run and not walk long distances until she figures all of this out.

As a former runner (I walk now as I have arthritis in my neck), I do remember at times getting injured with tendonitis like symptoms and experiencing what is called "withdrawal" because, let's face it, running and or walking/hiking for those who love it, feels good.  I get out, away from cares for awhile, I can think things through without being disturbed by the phone, or I can just simply enjoy the sounds of nature. 

For those who find that exercise can undermine them, and are cognizant of it (like Carrie), stopping for awhile is necessary.

Letting Go/Detaching With Love

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

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

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

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

Additional Thoughts on Readiness

As a parent of an older adult loved one with an entrenched eating disorder, I rely on a variety of resources to bolster my strength (maybe the word is sanity) as well as to remind myself of what works and what doesn't.

I focused on the word adult yet in many ways what I talk about here can apply to a younger person, too.  However, I have learned through listening to others and reading materials available that the Maudsley Method works well with younger folk who still in many ways trust and rely on family members and who live in the family household.  This method, so far, has been found to work with 50% of those families who apply it so with further understanding, treatment comprehensiveness and family education, I am positive the success rate will increase.  Yet there will always be people whose negative mind set/ED remains very, very powerful.

Again,  recovery is possible.  Hold on to that.

This morning over breakfast my husband and I were talking about the concept of readiness and his remark rang true in our experience.  And that is, readiness is a major factor especially for an adult.  We have learned that if we push too soon to encourage our loved one to seek treatment, the end result is that heels are dug in and the entire process takes much longer.  In other words the recovery from the ED has been pushed back.

Each step towards recovery these past eight years (ED has been present in one form or another for more than 20 years) has depended on our loved one reaching out for help even though a court order has been in place and treatment has been ordered by the court.  We have learned that our loved one has interpreted this step as a "sentence" rather than as a gateway and although progress has been made and the toolbox enhanced, the commitment hasn't been there.  Commitment is a vital piece.  A shift in perspective -- a reframing if you will -- is necessary.  Progress is now being made to shift the perspective.    Yet I also firmly believe that without the step of intervention, our loved one would not have made it.

This process can be very scary indeed. 

Effective communication is such an important piece in all of this.  I rely on the work of Dr. Xavier Amador, a Columbia University Professor and clinical psychologist,  who developed a concept called LEAP, an acronym - listen, empathize, agree and partner, that he discusses in his books, I Am Not Sick, I Don't Need Help! (revised and updated, Vida Press, 2007) and I'm Right, You're Wrong, Now What? - Break the Impasse and Get What You Need (Hyperion Books, NY, 2008).  You can learn more about this method by going here.  

Thoughts About the Latest Family Week

Having just returned from another Family Week at a new (in terms of my loved one’s experience) residential eating disorder treatment facility, I’m very tired out and also remain hopeful.  I’ve participated at least four times in these educational/therapeutic sessions and have valued each one in a different way. 

I’ll mention a couple of aspects of what I learned and in addition first say a few words about readiness, a topic that is being lectured on as I write this this morning by Dr. Ovidio Bermudez at a meeting of the local chapter of the IAEDP.  His presentation is looking at “various aspects of readiness for change in the treatment of eating disorders….”  At the conclusion, the details mention that “Participants will:  1) be able to discuss the effects of malnutrition on neurological function as it relates to willingness and ability to change, 2) recognize different aspects of ambivalence as it relates to readiness for change in the treatment of eating disorders, and 3) be exposed to practical tips to be used in the clinical setting as they assess and work with readiness for change in patients with eating disorders.”

I’ve included this information because readiness, I’ve learned, is a huge factor in whether or not a treatment is going to take.   I agree that each time one is admitted and stays in a residential facility or who attends an IOP (intensive outpatient program) or who is participating in therapy will learn tools.  The question is how to nudge a person towards a state of readiness in which she or he makes a commitment to use these tools to develop new behaviors and stick with them.  Readiness is the key, I think.  The expression strike while the iron is hot is relevant.  When your loved one says “I’ve had enough” or something similar, don’t delay.   Dr. Bermudez is discussing this today and I hope he will be invited to speak at future functions to continue to present the latest research on the concept of  readiness.  Sheila M. Reindl in her book Sensing the Self devotes important space to this concept.

Looking at my notes, I’d say that for me the most valuable aspects of this recent Family Week exercise were first the message about the importance of the work of the loved one and the family members/friends that I wrote about in a previous post and second, the focus on discharge planning and getting ready for one’s loved one to come home.  There were several sheets handed out with helpful tips integrated into at least three  Question and Answer sessions with a therapist, the lead nutritionist, and a staff member who have been associated with this facility for several years.  I am hoping that the facility will publish these tips on its website and I’ll come back here and post links if this is being done/has been done.  

Two examples are first, to dispose of (in agreement with your loved one based on what is termed a “clothing contract”) any articles of clothing that are too small (so the person isn’t tempted to lose weight to get back into those clothes) or too large (so the person doesn’t have clothing available to hide in).  As so many of us have learned, our loved one's body image can be so distorted that s/he has no idea of his/her actual size anymore.   Included would be clothing that conveys the message that s/he isn't worth much.  So many are filled with shame and think of themselves as worthless.  Again, it’s important to do this with their permission or approval rather than just toss things that they have specifically chosen and purchased themselves.

This inner voice of shame and worthlessness is an aspect of what is called the negative mind; a concept that is integral to the treatment here and that I have experienced personally and fully agree with the existence of.  Peggy Claude-Pierre writes about this concept in her excellent book, The Secret Language of Eating Disorders (Vintage Books, 1997; available in paperback).

A second tip is to throw out ALL fashion magazines or any magazines that in any way focus on body image/appearance.  We were gifted at this latest facility with an outstanding lecture – truly outstanding – by a woman who has been in recovery for twenty years whose doctoral dissertation and continuing research is focused on body image and how the media manipulates what you see – in magazines, advertisements, and even movies!!!!  Julia Roberts, for example, in the movie Pretty Woman was represented by five different women.  Several industry celebrities often are represented on the covers of magazines by only their face (also brushed) and by the body or body parts of others.  Truly astonishing.  How in the world can anyone expect to have their own body look anything like what’s represented, when what’s represented isn’t real.  I’ve seen bits and pieces (sorry about the pun) about this before but never in a comprehensive statistical presentation illustrated with very familiar names. 

So, bottom line for me this time is that I learned in interaction with my loved one more than I ever have about what’s behind my loved one’s eating disordered behavior.  I saw that the involvement of a truly knowledgeable lead therapist and an outstanding staff have made this a safe place to explore in depth many things. This process takes time.  (Back to my argument that insurance companies need to fund at least ninety days of residential treatment; probably more.)

I continue to believe, as is presented at this place, that eating disorders are coping mechanisms that evolve into terrible addictions/destructive habits.  I believe this particular coping mechanism tendency is present genetically in those who develop eating disorders and this predisposition leads to the disruption of the thought processes of our loved ones when triggered.  The “negative mind” is fed and becomes powerful; the actual or rationale mind of the person is still there but needs the support, encouragement, love and treatment process to re-emerge, develop new behaviors and get on the path to full recovery.

An important closing note for those who believe that one can snap out of it or that like any addiction/habit, one can quit easily, it is very important to remember that one needs to eat to live so dealing with this coping mechanism is a lot more difficult than say stopping smoking.