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.