A Girl Called Tim - A Memoir by June Alexander

As I am sure others are doing, have done, or are about to note, June Alexander has published her memoir of her own more than forty year journey to recovery from an eating disorder.  She is an accomplished journalist and traveling speaker.  I met her at the NEDA conference in New York City this past October 2010.

The title of her memoir  is, A Girl Called Tim - Escape from an Eating Disorder Hell.  Here is a link to June's website with information about the book as well as information about how to order this book.  June has already published My Kid is Back - Empowering Parents to Beat Anorexia, also mentioned on her website.

I'll add more here after I read the book! 

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.

Further Reflections on Events Here and Care for Those with Brain Disorders/Psychiatric Illness

I'll start with noting that this morning there is a very thoughtful discussion on NPR on the Diane Rehm Show about psychiatric problems in young adults.  This can be accessed on line and listened to.  The conversation has ranged the gamut from symptoms, to the legal system, to insurance, to medications (and their cost as well as the availability of the original medication rather than a generic that may not work the same way), to treatment, to housing/care.

Often mentioned is the National Alliance on Mental Illness (NAMI) the website of which is extremely helpful to families who must start navigating the confusing maze that often brings loved ones right back to the start, to need to begin all over again figuring out what to do for their family member.   In fact, the NAMI website today provides a thoughtful statement on the situation here in Tucson.

The reason I feel this is relevant to a discussion about eating disorders is that eating disorders are brain disorders and in addition often there is an underlying psychiatric illness that precipitates a person to turn to coping mechanisms to deal with what they are thinking and feeling.

This is relevant because as those of us who have family members with eating disorders or other psychiatric disorders have discovered, it can be practically impossible still in many areas to get medical/psychiatric assistance for our loved ones, especially adults.  Fortunately, increasingly health insurance companies are recognizing that early treatment and follow up can be significantly less costly to them than repeated hospitalizations that only place a band-aid on the symptoms - meaning stabilization of the ED patient including their electrolytes before release again.

Further, in response to those who ask why more was not done (very well covered in the discussion this morning on the Diane Rehm show), I've provided in earlier posts some of the paths a loved one/parent can take to obtain treatment for their adult child but the bottom line truly is that your child, once an adult, has the legal right to refuse treatment, to be evaluated for treatment (unless s/he is petitioned legally and the petition is granted and acted upon), and even to take medications because many people with mental illnesses can experience what is called anosognosia which is a severe lack of insight, the belief is fixed in spite of overwhelming evidence provided to them, and illogical attempts to explain away the evidence (from p. 33 of Dr. Xavier Amador's terrific book, in paperback, titled I Am Not Sick I Don't Need Help (revised edition) published by Vida Press, New York).  Further, an adult can refuse to permit any member of the treatment team to reveal what is going on unless the person signs releases for specifically named people to know what is going on.

Much of this applies to the current situation because health records are sealed from place to place and incident to incident unless a law has been broken and/or if underage the record can be cleared if a diversion program is entered and completed.  I can personally attest to this lack of sharing records because only through careful record keeping, making copies of records released to me and then provided to new caregivers of others involved in additional situations, have I been able to serve as an advocate who provides critical information for ongoing care.

In other words, do not assume that the current caregiver (including hospital staffs) are at all aware of previous hospitalizations even at that location and the reasons for them,  medications taken, and recorded behavior of the individual.  Do not assume this provision of information even if you have petitioned an individual, as you can here, under what is known in this State as Title 36.  The past can be a blank slate unless this information is brought forward by means available including signed releases.

Further, do not assume that your loved one will be placed in a residential facility or hospital through Title 36 procedures  just because they are deemed to be ill.  Often, if the person is reasonably competent (as many of our loved ones can be even though desperately ill), the person and his/her attorney can persuade the judge and medical personnel that they can deal on the outside and are released, often to the parents who may be in no way capable of providing the care needed.

Here the client is usually still assigned to a mental health provider that is required to follow the person's progress and provide services.  However, with severe funding cut backs, it may take months to get appropriate care unless health insurance is available and even then getting in to see the appropriate person can be difficult.

Laws do vary from state to state.  As I noted in the post linked especially about care for an adult and further about what can one do to set up a team if treatment is denied or refused, other steps can be taken but I firmly believe laws need to be amended somehow to permit the release of records in case an advocate who has followed the person's life is not available.