September 27, 2009

"I'm finally happy.... I'm having fun."

"in the old days parents used to be pushed away..."

Jenni Schaefer mentioned F.E.A.S.T. in an interview the other day that parents will enjoy listening to. You can hear Jenni's new song and an update on her life since her first book. My friend, Becky Henry was one of the callers and the interviewer had some great questions.

Jenni's work and first book played a powerful role in my own and my daughter's understanding of this illness. Jenni's new book is a new chapter in that understanding, of what happens AFTER recovery: "Recovered."

And Jenni, thank you for your support and kindness.

"I'm finally happy.... I'm having fun." That's a message that I know means so very much to families currently struggling. We need to know and believe in and keep optimistic about full recovery.

September 25, 2009


Nonprofit advocacy in 2009 means using the Internet for all it is worth - and I do. Between blogs and Facebook and Twitter and email and message boards and websites and... oy.

But living the vida online also means humor, thank goodness:

More butter and fish!

Well, as soon as you saw this you knew that I'd blog on it:

Less Butter And Fish Implicated In Increased Teenage Allergies

September 23, 2009

DSM, heal thyself

I think it is time for the DSM on eating disorders to change. So does The Joy Project.

Help Improve Patient Care
By Helping to Change the Diagnostic Criteria for Eating Disorders!One of our most important missions at the Joy Project is to assist those who suffer from eating disorders in getting their voices heard. As some of you may know, the American Psychiatric Association (APA) is currently in the process of reconsidering the diagnostic criteria for eating disorders, which will be published in the Diagnostic and Statistical Manual for Mental Disorders- V in 2012. We believe that a crucial part of this process is consideration of the negative impact that the current criteria may have from the perspective of the patients themselves. If you would like to help bring these issues to the attention of the Eating Disorders Working Group of the APA, you can help us out in two ways. First, we have composed a petition to the APA, outlining the general problems the current diagnostic criteria can pose for patients. You can add your signature and add comments. We've also created a personal experience form letter , in which you have the chance to share any personal experiences you may have had regarding the ways in which a focus on weight or "severity" of your eating disorder may have affected your own personal journey. Then, send your letter directly to the Joy Project, where we will compile them and deliver them to the revision work group at the APA!

September 19, 2009

Ten nourishing minutes

I've had a nutso couple of weeks, but I actually put it on my urgent "to-do" list every day to spend a certain amount of time doing non-urgent things like catching up on reading and research.

Give yourself ten quiet moments - I just did - to watch these two videos:

Watch CBS Videos Online

Watch CBS Videos Online

September 18, 2009

No more hating! There are no bad foods.

There are no bad foods.

Position of the American Dietetic Association.

Let's let that be the end of the demonization of each bite, and let's get back to enjoying and celebrating the nourishing of our bodies!

September 17, 2009

EDC calls for us to make calls - TODAY!

Eating Disorders Coalition Action Alert!

"Last month we had a wildly successful call in campaign for the SENATE. Now we need to repeat the same strategy for the HOUSE. Action Alert: We need you to call your Representatives today!"

September 16, 2009

Parents do not cause eating disorders

"Parents Do Not Cause Eating Disorders"

It is time to say that. With confidence, calm, and purpose. Without apology.

It is time to hear that. For those parents who are suffering from guilt, shame, and hesitation. For those who might still harbor that bias.

It is time to act on that. By empowering parents to take action - to seek excellent care, to be involved and well-informed.

You didn't cause this, but you can act. We are not perfect, but how you respond to this illness will no doubt teach you more about how strong you can be than about regrets. Children of all ages need their families to be the best they can be during crisis, and this illness is a crisis. We need to celebrate the positive role parents can, and should, take to help heal and protect our children.

Parents make mistakes, and some make grave mistakes. There is much we as parents could do better, and harm we can cause. I'm certainly not making excuses for parents, nor do I believe we don't contribute to our children's self-esteem, body image, and eating - we do. But the mental illness of an eating disorder does not, in itself, say anything about our actions or inaction. Our responsibility is to face any issues in our families that get in the way of recovery, any illnesses we may have that complicate recovery, any attitudes that may confuse our recovering children. This is different than blame, and doesn't imply cause.

Need a shot in the arm? Read the new F.E.A.S.T. position statement published last night, and read quotes from leading voices in the eating disorder world - and add your own:

Parents Do Not Cause Eating Disorders: Families are important allies during treatment

September 14, 2009

Travel hangover

Waking up the next morning after an action-packed trip and late flight is a lot like a hangover. Clothes and stuff all over the place, headache, blurred vision, queasy.... wait - maybe it's Swine Flu?

In any case, I give myself permission to go back to bed after the morning breakfast/bus/trash/feed dogs routine is over. Then I'll try morning again. It may feel better the second time.

September 8, 2009

Thank you, Sweetie

Sending this from a plane to Minneapolis...

Thank you for making this trip and my work possible. Thank you for the support, the time, the advice. For calming my worries and for packing my bag. Thank you for taking off work and taking on the dogs and the house and the homework and meals and getting my car inspected. Don't worry about the "honey-do" list - you've already done it.

I promise not to enjoy the week of maid service and restaurant meals and adult conversation TOO much.

Your best friend

September 7, 2009

Family units

Bravo to Westmead and to our own Carolin!

Westmead hospital eating disorder family units

May this model become STANDARD and expected.


Painted my picket fence all morning on Sunday. Painting soothes my nerves, and my nerves are frayed. I'm nervous about the NEDA conference this week. As much as I look forward to it, and I am honored to get the opportunity to go represent F.E.A.S.T., I'll be honest: I'm nervous.

I can't blame anyone but myself for this, but I'm a speaker three times this week, throwing a party for 40+, doing a book signing, meeting several people in person who I know well on the phone and on the Internet but have never seen, pulling together a team of a dozen volunteers for the F.E.A.S.T. table, plus two planned meetings and talking with dozens and dozens of new people each day. Be careful what you wish for, my friends.

I'm terrible at packing (matching up shoes with clothing confuses me - is there really a rule about brown and black accessories? why can't I wear flip flops? is this too matchy-matchy?). Travel is filled with details to drop (have I forgotten anything? how do I get there? have I left enough time?) under pressure. I am sooo not smooth on this stuff. I'm a writer, for goodness sake: I spend most days in my pajamas! My commute is downstairs to the coffee maker!

Then there's the conference itself. Although I have developed many friendships and alliances in the ED world there are people who simply don't like me or my message - that's no fun. There are factions and politics and other tomfoolery brewing that one runs into even if I avoid them, and this year some prickly ones. (Mantra: We are all on the same side. We all have the same goals. We are all nice people. May I buy you a drink?)

And here's the thing: I'm shy. It is no longer paralyzing, and I know I no longer come off that way, but I really am. What gets me through this, and public speaking, and all this advocacy work, is that I feel so strongly about what I'm doing. I really do. I don't know that I could work up the courage to gather volunteers and give speeches and walk up to strangers the way I do now if not for the feeling that it is important and that people like my daughter benefit from the work F.E.A.S.T. is doing. Dreaming of some day helping change things is what got me through some dark, dark days of my daughter's illness.

My daughter taught me something recently. I'm notorious for looking ridiculous in photographs - awkward, tortured, blinkingly ill at ease - it is a family joke. She noted that I do fine if either of my children are taking the picture, probably because I'm looking at THEM and not the camera. I'm a sucker for my kids. It is the thought of the two of them that steadies me to pack up and do this stuff, despite the butterflies.

Neither of them will join me in painting the fence, I must note, but they helped me anyway today, just by motivating me - I love you guys!

September 6, 2009

Long maternal separation has protective effects

Long maternal separation has protective effects

OK, maybe from YOUR mother, but not mine!

Seriously - this is interesting. Perhaps an evolutionary adaptation** to cruel times set some female genes up to respond to adversity by getting OUT of town (or savannah) as fast as they can and without packing a lunch.

In today's world those genes would present themselves as a "I'm skipping breakfast to go to the gym."

**For anyone I haven't yet brow-beaten to read Shan Guisinger's ground-breaking work on evolutionary adaptation to starvation, do so now.

September 5, 2009


OK, so I swore Twitter was just one step too far, but I've caved. I will Twitter from NEDA next week, from my phone. I'll gather messages from people I meet to send out to you all, take pictures, and gather it all into a page for the F.E.A.S.T. site when I get back.

September 1, 2009

The long-term effects

I've talked about this before, but recent discussions about the role of alcohol and anorexia reminded me of this paper on death rates.

"anorexia patients' five-fold increase in deaths due to gastrointestinal diseases may have been due, at least in part, to the indirect effects of alcohol abuse since 4 out of 6 deaths in this category were from liver cirrhosis. Moreover, other researchers have found that a number of patients with anorexia do not have alcohol problems during the first part of their illness, yet develop them later. Thus, anorexia patients should be carefully monitored for signs that they may be developing alcohol dependence."

Parents are understandably eager to return to 'normal' after initial recovery, we are often told to back off, and the patients almost always want us to let them move on and move out. But it is clear to me that eating disorder patients, even after recovery, deserve a higher level of vigilance on the part of loved ones. Not suspicion or distrust or babying: loving vigilance. Checking in, ongoing medical monitoring, open communication.