So, when F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders) identified Dallas as the location of the 2014 Conference scheduled at the end of January/early February, I allocated accumulated miles towards a round trip (one hop) ticket, reserved my space at the early bird registration rate, booked a ride at a reduced rate on a shuttle that promptly picked me up and dropped me off going to and returning from the conference and booked a room at the Crown Plaza Hotel (for me 5 stars) located outside Dallas in Addison in what turned out to be a lovely neighborhood for walking at the end of the day.
Startling advances have been made in knowledge about and treatment of eating disorders from the time of my family member's first residential treatment in 1991 following at least two years of group therapy (I was told one month IP would do it, she could go on to begin college in the fall, and amazingly enough the cost at that time was $30,000) through her second relapse beginning in 2002 up to the present day as she continues to deal with the ED monster plus co-morbidities. Although some therapists -- and organizations -- have continued to advocate for parentectomies and/or the sidelining of families where the individual's life takes place for a sizeable portion of the day, Family Based Eating Disorder Therapy is gaining traction among psychiatrists, medical personnel, therapists, dietitians as well as treatment teams at major and well-known treatment centers coast to coast in the United States.
Laura Collins' book Eating with Your Anorexic (2005) was my first encounter with a variation of the FBT approach and although I learned much from it, we were not able to implement Laura's or later Harriet Brown's in her book Brave Girl Eating (2010) experiences because our family member's first encounter with psychiatrists at a local hospital and four months later therapists at a well-known residential treatment center told her that we were the problem. Following treatment she refused to even consider living with us or our assistance in spite of our willingness to drop everything and provide her with a structured transition. Fast-forward through more diagnoses, well-meaning but uneducated moves by those within her mental health provider to force her to choose to change her behaviors and "just eat" despite a severely malnourished state, many more residential treatment stays ranging from three to six (the longest) months that overlapped more recently with four years of a coordinated team approach to somehow find a way to help her change her behavior and here we are today with an exhausted and discouraged woman who has pretty much given up on any hope of recovery from her eating disorder or a productive life unless she can find a solution to "the food thing." The "food thing" and DBT appears to be her way "out" of several behaviors and she has an excellent local therapist. Getting her to therapists and her dietitian and later getting herself there are major goals once she again is on her way to being re-nourished sufficiently.
As is noted and endorsed by top people in the field in the new F.E.A.S.T. Family Guide (January 2014) titled A Feast Guide to Eating Disorder Treatment: How to Choose a Treatment Team for a Loved One with an Eating Disorder in the U.S., (p. 3): "The immediate goals of ANY [emphasis theirs] treatment approach should include:
- interruption of life-threatening behaviors
- medical stabilization
- normalizing nutrition and/or weight stabilization
- development of a comprehensive, long-term treatment plan"
Yet/meanwhile, advances in understanding have continued. A clearer definition of Evidence-Based Treatment and its application in the field is causing therapists and psychiatrists to re-think and even profoundly alter their treatment approaches. I wish more professionals would at least listen to and perhaps get away from stubborn denial that another approach could work. Neurological studies such as fMRI studies conducted by Dr. Walter Kaye, Program Director of UCSD based Eating Disorder Research andTreatment Program, and interpreted for parents and families by psychologist like Dr. Laura Hill in her 2012 TED talk have revealed that the malnourished brains of those with eating disorders do not process information in ways scientists and therapists might expect. Others like Dr. Julia O'Toole of the Kartini Clinic have begun to provide, through blood/endocrine studies of their patients, what she terms a "Definition of State not Weight."
The fastest way for me to learn about and understand and hopefully introduce to my daughter's treatment team (who are overwhelmingly busy as are most providers with multiple clients and limited time) is to either attend conferences or study published research papers which often need to be interpreted for a reasonably well educated person (me) by people like Carrie Arnold who recently published Decoding Anorexia (2012). When I hear about eating disorder conferences, I look for those that will provide me and others with updates and understanding. The F.E.A.S.T. conference offered potential. I grabbed the opportunity.
Although all the offerings were important to and well-attended by the conference go-ers, mainly caregivers, seven sessions were of specific interest to me to address the issues I've listed above. I've attached a link to the bio's of all the speakers. Here's a link to the full two-day program. We were told that videos of the entire conference sessions and the powerpoints of presenters will be uploaded at a later date so I will not go into the detail I provided when I blogged about the first F.E.A.S.T. conference in 2011 (also in two parts and here are link one and link two for those - note that these are available via video on line) but rather quickly, in Part 2 to be published in a couple of days, describe some of the highlights for me.
Laura Hill's keynote, "Eating Disorders from the Inside Out"
Lucene Wisniewski's "Is There a role for DBT in the treatment of adolescent eating disorders"
Laura Collins Lyster-Mensh's "An Advocate's Vision for a Complete Spectrum of Care"
Siobhan McGurk's "It's Elementary: Decoding the Evidence in Evidence Based Medicine, a How-To Guide"
Kerri Boutelle's "Family-based therapy; What parents should know"
Julia O'Toole's "Towards a Definition of State Not Weight"
Colleen Wise's "How to advocate/educate while telling your story"
I attended all the offerings except when two were offered at once. I'm always interested in improving self-care -- needs to be extreme at times -- and learning about recovery stories so I attended those sessions offered the first day by Becky Henry and the second day by Julia and Sonja Kranz, moderated by a remarkable therapist (who blogs) Sarah K. Ravin. Two grandparents of another young woman who is in recovery offered "how can extended family support a loved-one with an eating disorder." I enjoyed meals twice with the grandmother. There were at least four young women in recovery at the conference. These conferences also offer opportunities for renewed and new connections. I want to mention here that I am grateful to Claire S. for her warmth and companionship during the conference when I struggled at times. We met each other on the van ride to the hotel and reconnected several times during the conference. Claire runs two support groups in Santa Fe, New Mexico.
Before going into specifics in my next post (Part 2), I want to applaud the conference committee not only for an outstanding conference but also for selecting a wonderful hotel (food, service, areas to socialize, meeting and dining rooms, and my wonderfully quiet clean well-appointed room) that provided a map of a safe 2 mile walk through a neighborhood and around a small lake. The schedule, while packed each day, was do-able and time was allotted for discussion. When discussions carried over, flexibility helped those attending to gain more information. Several speakers attended the meals and willingly shared more information and answered questions. For example, I was bowled over by Laura Hill's willingness to enthusiastically share what she has learned by interviewing people while they are getting MRI's. Several of us spent our entire Saturday morning breakfast plying her with questions which she expansively answered. I entered the meeting room in grateful tears and profusely thanked Leah for such a great conference. As usual, we all laughed as well as cried during sessions and all seemed to thoroughly enjoy the casual, western-themed dinner party on Friday night.
Finally, in this introduction to the conference, I want to comment on what seems to be a universal component for families and that is the sadness in the recognition of how perilous and tragic the assignment of guilt/blame is when families (both sides of the equation) are battling eating disorders.
We can never know both sides of each family's and their unique beloved family member's story without living the experience with them. Nor can we possibly fathom the anger that comes from involvement with the invader that takes a family member away from their family and often turns them into someone we don't recognize and sometimes who turns completely away from his/her family to the point of long-term estrangement. Harriet Brown, in her book Brave Girl Eating, referred to that "person" as not-Kitty as a way of separating her beloved daughter from the eating disorder. Colleen Wise described the loving effort she took to reunite with her precious daughter by arranging retreats for the two of them. One cannot describe the agony of being a parent separated from the love of one's child by this wretched disorder.
I really do hope that someday each family member affected by an eating disorder can recognize that everyone was doing the best they could at the time with what they were told by people they believed knew what they were talking about. A saying I learned (and have mentioned on this blog before) while attending a NAMI Family-to-Family course is "you don't know what you don't know." We parents are forever learning how to learn while dealing with this awful brain disorder and its aftermath.
A sincere thank you to everyone who participated in this year's F.E.A.S.T. conference.