July 28, 2010

Out of office message

I saw a whale yesterday, dolphins and children everywhere, son loves new scooter, great pizza, jellyfish sting, outdoor music, fireworks, temporary tattoos, sand, sand, sand, and a what a sunrise!

July 26, 2010

Rural hazards

Ouch!

I knew those trampolines were a bad idea!

*Thank, Susan, from Jimmie's Market for sharing this.

July 24, 2010

Sleep and diabetes

Sleep deprivation is my Achilles Heel. I become an emotional wreck when I don't get my eight or so hours, or if I get them at the wrong time of day. I bite if awakened, and get weepy at the end of a sleep-deprived day.

The years my kids didn't sleep through the night were a twilight zone for me...

I've long believed good sleep is as important as food, water, and air to good health, but people laugh at me.

Disruption Of Circadian Rhythm Could Lead To Diabetes

So there, skeptics! More evidence!

July 23, 2010

In the Company of Stone

I live in an area with some gorgeous stonemasonry - and geological history. I'm really into stone - especially stone walls - and it is a theme of a novel I'm working on. In a life with constant activity and so much virtual I find great comfort in one of my favorite blogs, In the Company of Stone with lovely, lovely pictures.

"The increase, year after year, in the wall’s bow would be incremental."

http://2.bp.blogspot.com/_CfqORQZuF-k/TBoHczvK_sI/AAAAAAAAAwY/I0n_FA4gvdk/s1600/sphere_cruved_wall2-500x265.jpg

(No, these are not in my area - I just love them.)

July 21, 2010

Responsibility

I want to thank the anonymous commenter on yesterday's blog post who said: "what a breathe of fresh air to not have all the responsibility put on the victim's shoulders"

You know what? That's the whole point of pretty much everything I'm trying to do with my eating disorder work.

That's the reason for discussing the biological mechanics of the symptoms: to understand that the patient isn't stupid, vain, lacking in will, or making a choice to have this problem. Patients deserve the world around them to know just how hard it is and HELP THEM.

That's the reason for empowering families to step forward and not sit around helpless and angry: to help patients get the support and safe environment they deserve.

I understand that some people take this message as demeaning to the patient ("Are you saying I'm broken?"), or disempowering ("You don't believe in me.") but that isn't what I believe. I am trying to make sure that eating disorder patients don't have to have the full responsibility for understanding their illness, finding treatment, complying with treatment, and preventing relapse.

The idea is to give patients back their independence, their will, their true personalities, and their choices. We need to step up - parents, society, treatment providers - to take some of that responsibility off the patient because we DO believe in them and we DON'T think they have to be permanently impaired.

Why, yes, I did change the name of this blog!

No, you haven't stumbled on the blog of an entirely different Laura. I'm still me, still ranting, but time for a new name (it was the name of my newspaper column for nearly a decade, so really more recycled than new) and an expanded focus.

Check out the new intro, and I'll be changing the sidebar over time as well.

The new address is www.laurassoapbox.net, if you care to change your bookmarks (though you don't need to: the Internet will forward you).

July 20, 2010

Leading a horse to water

"You can lead a horse to water but you can't make it drink" is an important analogy for food and eating disorders, but not the way you may think.

The "water" is really the motivation and insight of longterm recovery. No, we can't make them want to get well or understand that they are unwell or how they will individually fight the illness.

The "water" is not the food, however.

Three meals and two snacks - FULL nutrition with fats and proteins and vitamins and fiber and carbs - these are necessary for ALL eating disorder treatment. They are not optional. They are the "leading the horse" and not the "water."

Our job is to get them to the water and love them patiently and unconditionally and keep them safe until they are able to drink!

July 18, 2010

Chronic predisposition, but not chronic illness

Lightbulb moment for me:

"you can't change your genetics and your d will have this predisposition forever. But this is not a chronic illness.

I've struggled with how to explain to people that genetics and predisposition are not destiny, and why we should not be defeatist or think this means we must commit to a life spent chasing our kids with a scale. Either that, or we get to the top of the sandhill and declare our job done, thinking we cannot possibly face it again.

Thinking of an eating disorder as a chronic predisposition and not a chronic illness works for me. That predisposition is why the illness was inadvertently tripped in the first place, that predisposition is why we can't rest until we are completely clear of symptoms, and why we have to have early warning systems in place to identify problems, and why building a lifestyle with no room for ED is so important.

Keeping ED out of the picture with skills, habits, self-knowledge, support systems, and maturity: these are what I'm talking about when I refer to recovery. Not living a life fearfully and suspiciously on the edge: that's letting ED run the show.

What I want for our kids is that they get what they need to get away from ED and live free of ED but that also means maintaining his cage, and knowing where the key is.

It's my blog and I'll review what I want to

So, changes are afoot on this space!

Since late 2006 I've been writing about eating disorders here, with occasional forays into my other interests. Until recently I wrote purely under my pseudonym and kept the rest of my writing elsewhere. Okay, I did let the tap dancing slip through now and then.

Well, pretty soon I will change the name of this site, and some of my focus, to my broader interests. Because my full-time job is still eating disorders related - as the Executive Director of F.E.A.S.T. - I'm likely to yammer about that more than other things.

But I do have other passions and projects: documentary, film, African American history, poetry, my area of the South, Asia, being a woman of a certain age at a certain time, my writer friends, a novel about a town with a secret, a book about infertility and snakes, soapmaking, books, books, books.

And on that topic I want to recommend two books I just finished. One by my writing mentor, Phyllis Theroux, and one by a family friend.

I've studied writing with Phyllis as one of her devoted Nightwriters and had the honor of meeting her mother - a central character in this book. But the personal connection only added to the pleasures of Journal Keeper for me. The observations of life, writing, small town life after big city life, finding love at all ages, and being both mother and daughter - all with a dry wit and keen eye for human behavior. A satisfying and nourishing read. (oops, I let food come into it, sorry)



I am of mixed race. I'm pretty equally comfortable among black and white folk. I'm sorry to say that living in both worlds makes me aware of how uncomfortable people are with race - on both ends. I'm so used to this I stopped really hoping for great improvement in the near future. I fell back on believing things would be the same until we were all so intermarried that race didn't exist. Reading Kaolin's book I had a bit of a breakthrough. I actually envisioned black and white people talking openly to one another. Kaolin doesn't shy from how awkward and vulnerable and sometimes painful that would be, but her optimism that it can happen and her experience with making it happen in a classroom setting was really inspiring. I felt a bit of cynicism fall off.

July 17, 2010

Not okay on any level

Filmmaker starves himself for three months

Is not okay on any level.

That this man confuses extreme weight loss with eating disorders is sad. I'm guessing it is also pathological.

But that even one person would share his thoughts on this, let alone publish it, is horrifying.

Florida families?

Passing this on for a reporter - we talked last night. It is up to each family to decide when and how to do interviews. For some advice, please see F.E.A.S.T.'s page on media interviews (www.feast-ed.org/speakingtothemedia.html )

Hello,

My name is Laura Stampler, and I am a reporter from the Miami Herald who is currently writing an article about the Maudsley approach to treating anorexia. While I have spoken with psychologists and nutritionists, I have yet to speak to a family from Florida who has experienced treating anorexia through the Maudsley approach.

I am doing both a radio and print piece about the subject, and I would love to tell the story of a family (or families, this could be parents and child or solely parents) that has undergone this process and, in doing so, give the disease and the treatment a face.

Please contact me if you are from South Florida and would be interested in contributing. I understand that privacy is of great concern. While print does not use anonymous sources (although the child's name could be withheld, mother's maiden name could be used, etc), the radio aspect of the story is comfortable with using pseudonyms. Please do not hesitate to contact me if anonymity is a concern. We would guarantee that personal information would not be disclosed.

My number is (310) 497-2609 and my email is lstampler@miamiherald.com

Thank you so much,

Laura Stampler

Therapies using real food

I've been laughing for the past weeks at the articles about new Virtual reality food could be used in therapy for eating disorders some Italian research.

Part of this is laughing through the pain at references to eating disorders as "unhealthy eating habits" and "unhealthy relationship with food" which comically and tragically understate the case.

I find the following hysterical:

"Therapies using real food are not always successful as they can ascorbate (!!) the problem and create even more anxiety.

By using virtual reality you can slowly build up their confidence around food before eventually reintroducing them to real thing"

I'm a big fan of using "exposure and response prevention," "desensitization" and other techniques so well established in the treatment of OCD and phobia. I'm excited about the prospects of virtual reality and other technologies in treatment.

But for pity's sake: not as a replacement or a delay in the real thing!

We have six opportunities a day for real exposure therapy: meals and snacks. Is it hard? Heck, yeah. But the food isn't a problem to be delayed. The brain health the patient needs to face and overcome the phobia is in that food.

I hate to diss a wonderfully geeky approach but may I suggest we focus our attention on methods of keeping the patient at the real table and not another way to show that we're less able to tolerate their anxiety than they are?

Perhaps we could load up the program with exposures to the following instead:

  • Choosing foods at a buffet surrounded by people moaning about how much they want but should not eat.
  • Aunt Sally describing her cleansing diet during Thanksgiving dinner.
  • Track practice where the coach tells everyone to eat a salad for dinner and that vomiting during the race is normal.
  • Diet commercials, exercise equipment infomercials, and public service BMI calculation instructions.
Hey - I could use a trial at that therapy. Those things scare me more than a bathtub of snakes!

July 16, 2010

Kafka got it - but did he have it?

Still more literary anorexia:

'a hunger artist' - franz kafka

I had forgotten just how apt this is.

The Story of Augustus who would not have any Soup

On an errand to find poetry that speaks to eating disorders for a remembrance event I stumbled on this - not appropriate for the purpose but a fascinating male anorexia narrative:

The Story of Augustus who would not have any Soup by Heinrich Hoffmann

July 14, 2010

It's chaos at the leading edge!

I had a really interesting interview yesterday and I was doing the "pointless incessant barking" about the chaos in terms and definitions in the eating disorder world. I thought she'd be able to sympathize.

She said something that thrilled me, and cleared my head:

That this incoherence over terms is a sign of being at the leading edge of a paradigm shift.

Here I am frustrated and I should be glad there IS a paradigm shift afoot.

Talk about re-framing!

Thank you, Riki!

July 10, 2010

Eating disorder prevention: drought tolerance


Our poor front lawn. One half is normal, but the grass closest to the front walk is noticeably feathery and yellowed. You can see the earth beneath. There is a clear line where one area begins and the other ends -- as if you are entering a different yard. Standing on one side you would think us indifferent homeowners; the other side indicts us as negligent.

It might surprise you to know that this yellowing area is the one we so carefully re-seeded this spring, tenderly fertilized and watered. Everyone was shooed off it for weeks as it came up. It seemed to be going so well and then one day I looked out and saw the new grass was nearly dead. I've been trying to resuscitate it with soakings at dawn and dusk for the past week. I still don't know if the roots are alive and if I can revive it. People strolling by look askance at my waste of water, but we invested so much time and money I risk throwing good money after bad with grim resolve.

You know where I'm going with this, right? I haven't mentioned anorexia or bulimia, or genetic predisposition, or nature or nurture, but you see what I'm getting at.

You see, we didn't know that the seed we planted was a luxuriant but drought-intolerant strain. The sparse but perennial older thatch we had disdained for its spiky and spotty nature turns out to be ideally suited for bone deep drought and clay baked sun of our local summer. Now the older lawn is the strong side and the smart side, too.

The "what-ifs" haunt us. What if we hadn't planted the wrong seed in the first place? Why weren't we satisfied with the original, if less lively, sod? Our neighbor's grass is greener -- what are they doing differently?

Why didn't we keep watering it? And why didn't we notice the new grass faltering -- is it too late? I wonder if we will we always have to coddle it like this. Perhaps this happens every July and will get better on its own. It could be this July in particular, and perhaps later we can return to benign neglect. I dread the week we planned to go away, when all this watering may be for naught.

I regret now the way I bragged on the lawn to a friend. I wish I hadn't said anything because she will notice that our fortunes have been reversed. She doesn't even have space for a lawn and here I was crowing over miracle seed. What else have I been vain about? She must think I'm awful. She may even be happy to see this comeuppance and I can't blame her.

Look at these two areas: the same ground, the same watering, the same silly homeowners. Neither good not particularly bad. Naive, maybe, but not stupid. Caught unaware but not uncaring.

Had we hired a professional from the beginning we could have avoided the problem. I didn't have these problems when I lived up North. Why didn't we at least read a book on lawn care before we bought those bags of seed? We read the promises on the front but looking back I wonder if there were cautions on the back. I didn't think of it. Did my husband? I don't know. If I bring it up he'll feel defensive. He probably resents how I didn't help out in the first place, and how I teased him over the whole project. Best not to rehash it now. Better to just focus on what to do now. I don't want to fight.

We should probably take this up with the garden store: this seed is probably not created for our climate zone anyway. We certainly shouldn't have to pay for it. I'm feeling environmentally guilty as well: we've created a lawn that may need a high level of hydration permanently. But it isn't really my fault. We are a society bent on foolish appearances and wasteful practices. Someone should speak out on this. I need to write a letter to the editor, or my Senator. I wonder if other homeowners in my town have the same secret, have made the same mistakes. As soon as I have the energy I need to go talk to others.

But you know what? It's just like me to mess this up. The basement has plenty of seed packets that germinated or rotted because I didn't get around to planting them. The projects half-finished -- ambitions I didn't pursue.

We can do this, though. I can water this grass every day and figure out what it needs. It's much softer and greener and thicker than the other grass and I bet it will come up earlier in the spring. It will probably do better in the fall as well, and thrive in the rainy season. It may be good to have both kinds of grass and maybe over time they'll spread into each other's areas and be a better overall lawn. In any case this is the lawn we've got, and I think we can embrace that. We'll become better gardeners, and spend more time outside. We're learning. It will be okay.

It's just lawn, right?

July 7, 2010

On orthodoxy

I have good news: everyone is doing Maudsley and everyone thinks eating disorders are brain disorders! How do I know this? Because I heard it from the podium at the Academy for Eating Disorders conference in Salzburg. How wonderful, right? I mean, if these top researchers and thinkers and doers in the field are this sure that these ideas are well-established then it must not only be true but perhaps those of us who so wanted that to happen can now retire and go on to other things!

Oh, but I have bad news, too. Because in both cases the reason the topic came up was not a celebration but a backlash. These protests lodged against the orthodoxy of these ideas were a call for “balance” and “rational analysis.”

I must have missed the memos. I didn’t realize that Maudsley was in widespread use and now in danger of being so over-prescribed that the optimism is causing harm. I don’t live in a world where parents are routinely OR EVEN OFTEN being offered this alternative.

I definitely missed the inter-office edict that we all agree on calling eating disorders “brain disorders” and I fear many others have as well since plenty of people remain solidly ignorant of the idea not to mention its acceptance.

I asked a major brain guy, and then a major Maudsley guy, what they think of these developments. The brain guy was exasperatingly sanguine and patient with his colleagues: “It takes time.” The Maudsley guy was inexplicably amused and even pleased: “They’re right. People are taking it too far.”

I’m sorry gentlemen. I admire your minds, your clinical work, your research, and I like you personally more than I can say but I don’t think you are seeing how this stuff plays in the real world. I don’t think you realize how it affects advocates and families who aren’t fortunate enough to get care at your own clinics. As far as public health and policy and the broader discussion even in the field context matters: and the context at present is that the larger field doesn’t believe in or understand Maudsley and do not understand or act on the idea of a brain disorder.

It makes my job harder when the Ivory Tower discussions lose touch with real life consequences. Those conference sessions were held in the real world, where most people don’t start with the premise that Maudsley is assumed nor that brain disorder is understood. In the real world the take-home – and consequence to parents out there – is that Maudsley is now Old School and this brain science thing is hokum. There are a lot of people, institutions, and careers invested in rejecting these newer paradigms, and they are relieved and comforted by reasons to fall back on safer ideas. Those of us out here trying to get families to speak up to get choices in care and get families to take action on behalf of their children who are suffering from a brain problem and not a poor lifestyle choice need the field to be aware of the context of their words.

July 6, 2010

What are your top three treatment issues?

Parents, I am looking for your thoughts. Dr. O'Toole at Kartini and I have been discussing this question and are both going to ask it on our blogs:

What is your list of the top three treatment issues?

July 2, 2010

How eating disorder affects the family

Mindy from Princeton asked me to post this - I know many families in the ATDT/FEAST community have already participated and was very pleased to discuss some of the results with Mindy as she presented her poster in Salzburg. Please take a look and consider adding your experience to this research. It is important that parents tell researchers what they've experienced, what works, and what does not work in helping us help our kids!


Are you the parent of a child who is currently receiving

outpatient treatment for Anorexia Nervosa?

If so, we’d like to talk to invite you to participate in an anonymous study that examines the experience of caring for a child with Anorexia Nervosa. As research psychologists, we are interested in how a child’s eating disorder affects the parents and family – including coping reactions and significant relationships. Few medical or psychological resources are available to support parents who may face their own challenges with respect to the diagnosis of and treatment for their child’s Anorexia. We hope our research findings will contribute to enhanced understanding of how a child’s illness affects the families so that more support services for parents can be developed and provided.

If your child is between the ages of 9-22, is receiving outpatient treatment for Anorexia Nervosa, and is currently living with you at home, we invite you to participate in this important study. Participation will involve:

  • Completing a series of questionnaires online that will take approximately 15-30 minutes.
  • Your name and any identifying information will not be linked to your responses.
  • Publications or presentations emanating from the research will not include individual responses, only group data will be presented.

Please click the following the link: http://www.surveymonkey.com/s/VN5VTDF and enter the password: participate (in all lowercase letters)

You will be directed to an informed consent letter followed by a series of brief questionnaires for you to complete.

If you would like further information please contact Lauren F. Stack at lfstack@gmail.com or Dr. Merle Keitel at mkeitel@fordham.edu for information.

NOTE: This research study has received IRB (Institutional Review Board) approval from Fordham University and researchers will adhere to the American Psychological Association’s Code of Ethics. Primary investigators for this study are Merle A. Keitel, Ph.D., Professor of Counseling Psychology, Fordham University, and Lauren F. Stack, M.S., Doctoral Candidate in Counseling Psychology, Fordham University.

July 1, 2010

Report on Austria... finally!

OK, so I'm a bit tardy on this, but it's been an extraordinary month! Enjoy another in my series of chatty travel journals:

Conference Report

2010 Academy for Eating Disorders International Conference on Eating Disorders, Salzburg, Austria

June 8-13, 2010

The trip to Salzburg was provocative and productive!

Wheels Down, And the Hills Are Alive

It was lovely to spot a fellow AED member as soon as I arrived: Mary Tantillo and her husband, Odysseus, were on the same flight and we shared a taxi into the city. As pretty as the sights were, we got a chance to discuss the AED Credentialing Task Force project she is heading – I offered to pay the fare to make up for my troublesome questions but agreed to be repaid in beer later in the week, and I did!

On arrival at my hotel exhausted from a night spent upright on the plane I found the hills were alive with the sounds of construction: a train-yard and crane serenaded me (24 hours a day, I might add). Not that I cared – so nice to be horizontal! My dear friend, Kitty Westin, also arrived that day, and dinner was the first of several enjoyable meals with her and other kindred spirits – the numbers grew each meal. We joined Terry Fassihi and Tim Brewerton for a lively dinner at a Beer Garden. Many, many interesting conversations on eating disorder science, policy, and personalities late into the warm, Austrian night.

Not that we were looking, but Salzburg didn’t offer any fast food: every meal was sit-down and the conference included no meals at all. The only thing I ate standing up the whole week was my daily delicious pistachio ice cream cone.

Teaching Day

Wednesday was Teaching Day, and I chose to attend the Media Training workshop (I meant to go to the intriguingly titled “Everyone Has Won and All Must Have Prizes” as instructed by my friend, Fiona, but that one was cancelled. Perhaps they ran out of prizes.)

The Media workshop ended up being an ideal fit for me. As a small town journalist and magazine writer I thought I’d a basic sense of being on the journalist side. As an author and nonprofit head I fancied that I was familiar with being interviewed. But it was hugely helpful to have a several hour session to learn and discuss all the aspects of media and presenting oneself. Westin and Fassihi offered excellent advice and practical tips for defining and staying on key messages, staying positive and real, avoiding jargon, giving a balance of emotion and information, and controlling the interview.

The practice session was HARD. Each of us got a chance to be interviewed and critiqued – how vulnerable that feels! But real: I do interviews all the time but it was humbling and helpful to get tips and feedback.

The best part ended up being the discussion about ethics. This brought out passions and controversy: some in attendance had worked on reality TV shows while others expressed disdain; the question of whether patients can give informed consent to be interviewed was raised and the special issue of children in the media; whether open toed shoes and dangly earrings hurt your cause; and how to define jargon.

Pleased to see Kaeko Nomura again, from the conference’s program committee. She sent me a photo, for which I am grateful. Her activism in Japan is something I greatly admire, as well as her work volunteering for the Academy.

Drinks and dinner this evening added the delightful Susan Ringwood and her husband, Gary who had been swimming in Austrian lakes and had tales to tell. Ran into Ivan Eisler and Walter Kaye, met Mimi Israel and Howard Steiger for the first time, saw Janet Treasure and other leading lights in the ED world. It was like being in the lobby of the Oscars!

Had the first of several conversations that went like this:

“Hi, I’m Laura Collins.”

“From the AED listserve! I know who you are.”

Turns out though most of the AED stays silent on their internal listserve the majority do read it with interest and attention. Some rather contentious and interesting conversations there apparently have given me a bit of a reputation.

“Yeah, well, I’m not posting there any more.”

“Why not?”

“Well, because it doesn’t seem to matter.”

“Please keep posting. It matters.”

“Why don’t YOU post?”

“Well…”

Apparently a “small but vocal group” of members objected to some of the posts and the vehemence of some of the posters. I’m saddened by that because this is how the Internet is, and one of its values: people say things people don’t agree with and that’s okay. But I will say that notoriety has its advantages: people know your name!

Fish dinner – a restaurant with no menu and the most charming server. We solved several world and ED industry problems.Talk turned to who had the best scars which drew forth some shocking stories.

First Day of Conference

Early start with breakfast at my hotel’s outdoor garden. Noticed a woman reading a conference program and upon introductions learned it was someone I have wanted to meet: Bryn Austin. We shared breakfast and I got to ask some questions about “prevention” that perplex me. Bryn had some really wonderful observations that made me think. I struggle with the prevention idea a lot and it was good to discuss with a thoughtful advocate. As often happens I find in-person conversations make positions into thought provoking moments – the reason these conferences mean so much to me in my work. I felt my thinking shift as I ran off to the morning coffee hour. I'm still thinking.

There were June Alexander and Carrie Arnold by the booksellers – two of my favorite authors in their proper milieu!

Upstairs to the opening remarks and Keynote. I was on the planning committee for the cancelled 2009 Cancun ICED so it was interesting to see many of the planned elements come out in this year’s conference. Odd feeling.

You know how Keynote presentations are: dull, plodding, to form. NOT THIS ONE. Kelly Vitousek of the University of Hawaii got us all up in our seats. (Carrie Arnold tells about this in her blog) There were several fascinating aspects of the talk but most notable for me was her assertion that everyone in the room was in agreement that eating disorders are brain disorders, and the reasons she cautions against rushing to that conclusion.

Although I don’t agree with Kelly that there is consensus or even a majority agreement on this, she did something that is sorely needed: she broke down three ways people use that phrase. It may not be time to start criticizing the field for rushing to judgment but it absolutely is time to make sure we’re using common terms. I’m entirely comfortable with “brain disorder” as a term but I’m pretty sure I’m using it differently than some others – and that is leading to arguments that are going nowhere. Thank you, Kelly.

I was tickled, being an upstart in this field and a layperson, to see F.E.A.S.T.’s website quoted during the address. When I talked with Kelly afterward I blushed to hear that she had referred to me in another part of the address “but I wasn’t sure you’d want me to use your name.” I would have been delighted, Kelly, especially because it turned out to be laudatory!

The first workshop session presented a quandary. There were sessions I wanted to attend and those I felt I should. Duty and curiosity called: I attended Michael Strober’s presentation on “The Chronically Ill Patient” and was seriously offended. I waited around to speak to him – we had not met – but he was mobbed. Lunch beckoned.

Afternoon awards ceremony and plenary on stigma… I missed all but the first presentation due to feeling unwell which was annoying because I really wanted to hear it. Ran into Melinda Parisi and got to catch up a bit – love her work on caregivers and enjoy her very much.

I attended Walter Kaye’s presentation on the Neurobiology of Eating Disorders: Clinical Applications. It was outstanding. True to what Kelly Vitousek challenged and Cindy Bulik endorsed (below), the key to the new science is bringing it to treatment. Kaye and Laura Hill did a wonderful job of applying the neurobiology to practice and I just wanted to package it up and give it out to clinicians everywhere for the benefit of families.

Have you ever noticed how the Q&A sessions after a presentation can become a “Me, Too” session? Sometimes there are real questions and there is a place for challenging questions and rebuttals. But a certain leading clinic director used the question session to offer this (paraphrased, but I believe others will back me up on the content): “Let’s not rush to let parents off the hook here.”

My two friends nearby saw the look in my eye and both solemnly offered me bail money for what might transpire, then backed away slowly.

I approached this person without any hope that I might change his mind. Although we had never met and he did not know anything about me before that day he was well-known to me. His reputation regarding parents has not been positive. I had heard a great deal second hand, however, and felt the need to express my thoughts and ask for an accounting. I am not a confrontational person by nature, but I was pretty exercised.

I didn’t turn out to need a lawyer or bail money. It was a civil if vehement conversation. I asked this leader in his field to consider the effect of these comments and the policies and writing on the parent community. I asked if certain things were true, and how he accounted for them. Over the next few hours we eked out a few shaky points of agreement. I ended up bringing him with me to meet my friends (much to their surprise) and talking about things like our children and non ED issues. He agreed with some of my larger points and even offered to help with a particular issue. We are not friends, but, perhaps, friendly. I hope to continue the conversation and hope for improvement in the future.

I’m proud of myself for facing this person and speaking my mind. I felt a long line of parents behind me giving me courage. I had the sense that this man has rarely had people tell him these things, and that he isn’t aware of the effect he can have on others. I think he has mistaken silence for agreement, and power for being right.

Of all the activism I’ve done up to now, that conversation was one that could not have happened without all that preceded it and represents one of my proudest moments. I do not know if it will have any impact but it was the least I could do, and the most I could do. It is another example of how this work requires real life opportunities to talk with people directly. They become human, not characters. And we get to be human as well.

Dinner that night was olives and cheese and bread and wine in a friend’s boutique hotel suite – very charming. Conversation about funding, DSM, legislation in the UK and US, and the importance of the FREED Act.

Friday

Had breakfast with June and Carrie joined us. June brought a koala mum and baby plush toy for my son with eucalyptus lollies. He loves the koalas but couldn't make heads or tails of the candies - June says keep them for a headcold.

I owe Claire Vickery of the Butterfly Foundation for lunch, as she paid. Saw Aimee Liu briefly, and T.J. Raney. Jim Lock and Daniel le Grange and Eunice Chen eating ice cream as we were in search of it ourselves. Met Susan Paxton and tried to upgrade my reputation from shrill email complainer to average mom. Met Carolyn Becker, Bryan Lask, and accosted Stephen Touyz - then apologized.

Met Kevin Wandler from Remuda at the Teaching Day class but later got a chance to talk about Remuda’s involvement of parents and the question of accountability after discharge. He promised to be in touch about that issue after getting home.

Met Gregory Mar and Jessica Wertz from Valenta. Although my work is focused on parents and outpatient care I like to meet and get to know as many people in the residential treatment world as I can. I think it is very important that we be talking, engaging, and asking tough questions. It does no good, to my mind, to speak only to those with whom we agree.

Nice chat with Ovidio Bermudez between events.

Terrific Plenary session on Biological Determinants and Developmental Consequences of Eating Disorders in Women Across the Lifespan, which is a name almost as LONG as a lifespan. The content was fascinating and useful, but the discussant really brought it home: Dr. Cynthia Bulik. She took up the gauntlet offered by Dr. Vitousek in the Keynote and gave four reasons why we cannot avoid incorporating biology into our thinking about eating disorders:

1) Empathy: we have to understand what the patient is experiencing is NOT what we feel in the same circumstances.

2) Mislabeling: To change ‘resistant’ and ‘non-compliant’ to understand that these are powerful biological drives and not willful behaviors

3) Underestimating medical risk

4) Missing critical intervention times

She also said the misunderstanding in the field is “partly our fault” as scientists because the case has not been persuasively and cogently offered.

“This isn’t a religion. This is a science.” She said. She also invites non scientists to push through their discomfort: “Ask us.”

Kitty, Terry, and another lovely friend and I took advantage of a lull in activities to take a horse-drawn carriage and lunch in a cobbled square. We visited a cathedral where I lit a candle for my grandmother (now I see it was for Erin) and had a disturbing visit to the underground crypt.

The ladies shopped, I browsed. Most fun? The egg shop.

Peeked in on the Meet the Experts event as June was looking for her dinner date and we had a lively chat with Michael Levine about heckling birds.

Another great dinner at the Beer Garden with a huge party including Walter Kaye and under the roar of the World Cup. One of those “am I really here” moments shared with Carrie A.

Saturday

Very interested in a poster by Martha Peaslee Levine on Eating Disorders in Anabaptist Patients. Met her husband, Richard Levine, and had interesting conversation about eating disorders in earlier centuries. Heard buzz about a paper by the incoming AED President, Debra Katzman, about weight restoration and enjoyed discussing it with Janet Treasure.

Finished a discussion started in London with Eric Van Furth from The Netherlands about the speed and method of weight restoration. I argued for dispatch and no patient choice, he for collaboration and caution. We ended up agreeing on the large issues. I learned about his service’s new website (www.proud2bme.nl) and other interesting initiatives – including supports for parents (link now added to F.E.A.S.T. site).

Introduced to the very warm and welcoming new AED Executive Director, Debbie Trueblood, by the ever-generous, Judith Banker. I’ll be giving a workshop with Judy at the Renfrew Conference in November and looking forward to it.

Another great plenary: Current and Future Perspectives on Treatment with the always witty Glenn Waller as moderator.

I don’t really want to talk much about the rest of Saturday. Kitty told me about our friend Joan’s daughter’s death during lunch. Kitty went on to be the discussant for a very well-done plenary on economics and treatment that I assumed I wouldn’t understand or care about but I did. Later Ulrike Schmidt, Donna Friedman, and Susan Ringwood and I presented a workshop on “Do Carers Care About Research?” which was well-received but dampened by the sad news and the exhaustion of the end of the conference. My presentation is online with narration.

Talked Mozart with Dr. Graham Redgrave of Johns Hopkins, and had a chat in passing with Lynn Grefe of NEDA.

Dinner was Italian, I believe. I remember meat and wine. Several of us skipped the closing celebration as we were not of a mood to party.

Sunday

The hotel staff arranged for my taxi the night before, insisting I only needed one hour. When the taxi was five minutes late and I was panicking the morning staff was unmoved: “You should be there now!”

I made it, though, thank goodness for small airports. Even had a chance to buy “Mozart’s Balls” for my son before I left. Mary and Oddyseus were again on the same flight to Vienna. I had a lovely day on the plane catching up on the emails of the week and working on a project for June A. I enjoyed the Austrian Air atmosphere and looked forward to getting home to my guys, whose tell-tale pizza and movie receipts were also in my email!

Over two weeks later, I still haven’t finished catching up. Still have emails to write, contacts to follow up on, and a lot of information to process. Meanwhile the ATDT Plate drive was a spectacular success ably managed by my daughter this month. But these conferences are always rich opportunities that bear fruit for a long time afterward and I’m terribly glad I went and grateful to F.E.A.S.T. for making it possible.

I’m also very glad to have been with friends when sad news arrived. I was able to attend the funeral as well, carrying the best wishes and condolences of the F.E.A.S.T. board and many international friends.

So glad to sleep in my own bed, be with my family, and look forward to the next conference. (NEDA in Brooklyn, October)