May 20, 2015

Today I think... I'll fly to Australia

Today, just for kicks, I think I'll pack my bags and go to Australia.

That's assuming I can close this suitcase over two weeks of lady clothes. (As usual it's the shoes that cause all the trouble. My husband has this weird efficient method where he puts the small bits in the shoes and folds lady-tops unto themselves but once I'm out of his view I just stuff everything in and sit on it)

Today I will pretend that this is a spontaneous jaunt and not something planned and planned and arranged and taking up the energies and resources and time and generosity of many people. Because if I think of all that I will be overwhelmed. And then it will be even less understandable when I have forgotten to bring at least three essential items.

Today I will find a way, no matter how much it may cost my data plan, to tweet from Abu Dhabi. Because I can. Because even though it is only a change of planes it COUNTS because I have a window seat.

Today I will catch up on Fresh Air podcasts and about 30 episodes of How Stuff Works. I will read from any of the dozen books on my Kindle account. I will watch fun movies. I will ponder and muse and reflect. I will meet strangers. I will dine. I will wash zero dishes and vacuum exactly nothing. And if I snore or drool in my sleep I'll never see my seat mates again so, it never happened.

Today I will take 26 hours on planes to arrive two days later in a place where my feet face the wrong way BUT I will be standing on a beach, so, gravity is awesome.

Today I will test the limits of what someone with a torn lumbar disk should reasonably do, not to mention what someone who can't sleep on planes can bear, and arrive human enough to wake up the next morning and deliver a coherent keynote address to lovely friends in Perth. Note I have not put a question mark on that last sentence.

In the next two weeks I will deliver two speeches, three workshops, sit on one panel, visit three hospitals, plus some clinics, meet lots of F.E.A.S.T. members and colleagues and friends, and visit three Australian states. Am I ready?

Today I leave with the words of the great Tina Fey on my mind: "The show doesn't go on because it's ready; it goes on because it's 11:30. It will never be perfect, but perfect is overrated."

May 14, 2015

Nine Truths: Historic Collaboration

It's historic. Thirteen eating disorders organizations agreed on nine basic facts about eating disorders. Not two organizations and one fact. Not rainbow unicorn facts, either, but real central principles. And: they did it in weeks, not months or years of negotiation. They decided to do it and they did. All the organizations came together and published a set of nine facts about eating disorders.



I am very proud of the field, of the specific leaders who made this happen, and especially of F.E.A.S.T. for being at that table and part of the collaboration. This is the kind of movement forward that the eating disorders field needs.

As I said to colleagues in the field yesterday none of these facts should be controversial within the field, but they do represent very important messages to the public and to policy-makers and to families.

I know that some of the ideas on the list will not please all eating disorder advocates and treatment providers. That's unfortunate but also necessary. It is time to find and normalize some basic concepts. When a family seeks care for a loved one they deserve to see these nine facts reflected in the treatment they receive. Those looking to enter the field should be able to see these ideas reflected in their training. Policy-makers, too, should know that these facts are agreed upon by major eating disorder organizations and represent the cutting edge of thinking.

Until this statement I do not believe there has been a single message shared across all of those organizations. Now we have nine. It's a good day. A really good day.

May 9, 2015

Now, a chance to win a free copy of The Auldton Laughing Club

Goodreads Book Giveaway

The Auldton Laughing Club by Laura Collins Lyster-Mensh

The Auldton Laughing Club

by Laura Collins Lyster-Mensh

Giveaway ends May 14, 2015.
See the giveaway details at Goodreads.
Enter to Win

May 8, 2015

May 7, 2015

Australia, here I come! What is Australian for "chuffed?"

I called five airlines today. This is weird for more than one reason. One: I was a travel agent in an earlier life so calling airlines used to be my jam. The hold music hasn't changed, I'm sorry to say.

Some day ask me about the time I met, and dated, a Chippendale bouncer, by calling for reservations...***

But this time I was calling four airlines that will LITERALLY be bringing me around the GLOBE (Washington, D.C.-Abu Dhabi-Perth-Melbourne, Sydney, Los Angeles-DC). After which I will probably sleep for a month and be speed-dialing my physical therapist.

I am beyond beyond excited to be scheduled to give a Keynote presentation at the 2nd At Home With Eating Disorders Conference in Melbourne later this month. The title of my talk will be "From Fear to Fierce" which pretty much sums up my approach to empowering parents. Fear is normal, but crippling. It is in finding our courage that we do what needs to be done.

Along the way I'm going to speak in Perth, and visit Sydney as well. I get to meet many Australian friends of long standing, people I have admired from so far and others that have been in my kitchen. I get to meet folks' kids, and spouses. I'll visit clinics. I'll drink really good coffee. Although I want to see Australian animals very much I have to say that yesterday I learned I get to see some meerkats up close and I'm chuffed! Wait, that's English. What's Australian for "chuffed?"

I'm going to have a lot of people to thank when I get back, but I'll start with the lovely volunteers who are putting on this conference for families. This is a rare and wonderful opportunity for Australian families to gather, learn, share, and feel heard. I'm so proud of F.E.A.S.T. for this collaboration and so honored to be invited.

Looking forward to being with old friends and meeting new ones. Also: meeting old friends!

*** This is true, by the way, but I'm really just checking to see people really read this!

May 5, 2015

Honor the line

It has taken me almost 18 years to completely come to terms with my experience with infertility. Secondary infertility, actually, which has its own cruel flavor.

The tree that we planted over our first lost baby recently wilted and died. It had survived for years after being transplanted from the old house but not the last harsh winter. Its loss was not an insult to injury, or a tragedy, while still being significant. The anniversary of the date has gone back to just being Halloween, not a holiday I resented and then embraced for its personal significance. I can talk about the topic without making a mess of myself, for a long time now, but also don't feel a deep need to do so.

Infertility, for me, has been reabsorbed and accepted. But it took a long, largely invisible, time. I am a different woman for it.

I describe the experience in Specific Scent of Snakes, but realize that many people in my life won't know the story at all. We do pregnancy loss and infertility with a little bit of embarrassment in our society where HOPE and the magic of science bid us to silence if we're not busy being warriors about it.

I describe in the book something that women rarely share: the decision not to keep escalating the war against our errant bodies with more and more tech. Each family has a point at which they will stop, but we prefer the stories of extremes. We almost treat it as a failure of hope, a sign of not caring enough, not to keep escalating. That there are services and soothsayers to keep us going is a given, so the line is ours to make.

I wanted to honor the line, different for each of us. It doesn't have to be at any particular point, but it is unique to each couple, each member of the couple. We found our line where it was right for us. We drew it together, for which I am grateful and a bit awed, because it strains against the bonds more used to hope and hard work than acceptance.

How far is too far? When is it too soon? And how can we honor those choices?

Mothers needed for research study: Maternal eating and adolescent brain development

Mothers, please consider participating in this study:

Maternal eating and adolescent brain development

May 4, 2015

Make this a five star day!

I'm asking you for a personal favor. Go review three books today. I'd love for one or two to be mine, of course, but really just do it for the last few books you've read. You have enormous power, for free and at leisure, to make books live or languish.

It doesn't have to be long: a line or two is fine. How did a book make you feel? What would you want the author, or potential readers, to know?

Your opinion is something that is craved and feared.  If you want writers to write, buy their books and also review them.

(also, write to the authors, we love it! and most write back!)

I have two new books out and I look forward to your reviews.

The Specific Scent of Snakes


The Auldton Laughing Club

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May 2, 2015

Why fake news about eating disorders is hard to tell from real news

The headlines about eating disorders are usually shrill and often just plain wrong. So, when I got this one in my news feed I was dismayed but not shocked:

I wasn't shocked because MOST stories about eating disorders are similar. Someone describes a reason they became anorexic or bulimic or developed binge eating disorder. They describe their extreme symptoms and tell us why they did it.

There is an active debate in the eating disorders community about listening to patients. Patients want to be heard, and that is absolutely necessary and compassionate. We want to listen. That is a human right. Listening to people and hearing their views and opinions is always the right thing to do.

But with mental illness is listening the same as understanding?

When someone says they stopped eating because X: what do these "reasons" mean? Are they necessarily the reason because that person believes it is so?

Is it "silencing" to say things about ED causation that conflict with an individual's own perception? Is it invalidating to disagree with a certain view of causation because the sufferers themselves hold it?

I would say that it is when you're talking about and with an individual person, but not when it is an open public conversation, and that's sticky. Many patients put themselves into the public eye to help others, but then they become part of a larger conversation that is no longer one on one and no longer about them as a person.

At ICED there was an active, and un-pretty, discussion of what the voice of the patient with a BMI of 11 means. Some believe the "anorexic voice," for example, is an expression of real and lasting meaning for the person. Others think that voice is a symptom of a predisposed brain responding to negative energy balance (too little food for needs). Most people fall somewhere between those. It is an important difference of thinking.

As parents the LAST thing we want to do is invalidate or dismiss our loved ones. We love them. We are doing all we can to get them back the life they deserve that ED is trying to steal. We are working to get their real and lasting voice back.

So when we hear talk of "what these symptoms mean to the patient" and "meeting the patient where they are" it can be really frustrating and even infuriating. When we read articles about patients reporting that a negative comment, or Size 0 mannequins, or wanting to disappear made them mentally ill we are dismayed and we often DO want to step forward to say something about the genetic predisposition and what we know about the biology of these conditions. I would feel the same if that story about Steve Jobs' advice was really why someone thought they were mentally ill.

We want to reassure all parents that they didn't cause it, reassure all patients that THEY didn't choose it, and we want to point to good science as an antidote to myths. We want to help the readers of such articles and buyers of such treatments know that there are alternatives -- not to shut people down or invalidate them, but to prevent harm to others down the line.

The hard truth is that most treatment, prevention, advocacy, legal limits, insurance limits, and public perception rests on believing the ED voice is the true voice of the patient and what drives the illness. I believe that has led to a lot of harm and it needs to be questioned. I do not mean to insult or invalidate anyone, but not to question this issue is to let down the coming generations of sufferers and their families.

We no longer see the voice of schizophrenia, or dementia, or epilepsy, or tuberculosis, as telling us deep things about the sufferer. We understand their distress and anguish for what they are and we work to help them regain their unique and true and lasting beliefs and desires.

Off-handed advice from Steve Jobs doesn't cause mental illness. Neither, as far as I know, do most of the other reasons people report they developed an eating disorder. If we want to help new patients and their families we are going to have to say some things that contradict what patients say. Politely, and with respect for their experience, but not necessarily understanding it the way they do.

Ungrounded ideas about mental illness cause harm. Balancing that with respecting the individual patient experience is hard. It is tragic when those two interests clash, but that is yet another trap that ED sets for us all.