July 27, 2012

Early bird registration, worms and all, ends July 31!

You only have a few more days to register for the F.E.A.S.T. conference in Alexandria in November if you want to get the "early bird" discount. I just wrote my check.

Yes, I do pay may own registration for the conference. I suppose I could talk the F.E.A.S.T. board into waiving my registration or paying for it -- I am a full-time volunteer for the organization after all -- but I don't because I don't want other parents to pay my way. You see, we don't have revenue from sponsorships or grants or advertising. F.E.A.S.T. is solely staffed by volunteers, financed by individual donations, and guided by a nonprofit board of directors. We do this because we believe parents need a voice and have a unique role to play in ED advocacy and in supporting other families.

Our conference is a group effort. We don't make any money from it -- it isn't a fundraiser. We don't spend member donations ON it: registration fees are the only way to pay the expenses. And there are no tote bags or printed pens.

What are the expenses? You'll love this: it's food! Conference space is free if you contract for a certain amount of catering. There are a few other expenses: cancellation insurance, signs, registration software, and printing programs, for example. But all our speakers waive their speaker fees and most pay registration for themselves, too.

We charge exactly what it costs us per person to put on this conference. We want to make it available for as many families as possible and keep the prices as low as possible.

I do take one discount, however: the early bird discount that ends on July 31. Don't miss it: register now!

July 26, 2012

I'm up here, sir!

From the "I just knew you were staring at my boobs," file, Our Brains See Men as Whole and Women As Parts.

Seriously, this is what we women are often "on about" and what the feminist era tried so heroically to extirpate or at least point out. But of course we women also do it to ourselves: carve ourselves and others into pieces for comparison and competition, leaving men whole.

So questions come to mind: if this is true then is it more or less so in traditional and more egalitarian societies? Is if affected by age? Is it innate, or a learned thing? Do some people do it a lot more than others?

A few years ago I wrote about how my exposure to the ED world made me hyper-aware of body shape and that I instituted Chin-up excercises to make the world a better place. In that case I was able to consciously change my way of looking at people and have a genuine effect on my well-being. So the question is: can our reflexive way of analyzing bodies be consciously changed?

And this: if we were able to reconstitute women's bodies would we treat them better? Would we treat ourselves better? Is there the possibility that there are benefits to this dissection where some of us find such joy in a selection of our parts that help us skim over less favored parts? Is this like the plumage of male birds and its absence would change our sexual chemistry?

Do people blind from birth think of women as a number of parts, and men as one hunk of humanity?

July 25, 2012

Mothers of sons

A new Facebook page for research on mothers of sons with anorexia: check it out!

Why are you so ANGRY?

I'm not infrequently asked why I am "so" angry. It's the wrong question.

Why AREN'T YOU angry?

Shouldn't we ALL be angry?

That eating disorders are, in most situations, under-diagnosed, under-treated, poorly funded, misunderstood , trivialized, sensationalized, exploited for causes and money, and stigmatized: this doesn't make you angry? Spitting mad? Rending your hair and standing on the street with a sandwich board? How do you CONTAIN your anger and where do you channel it? How do you keep anger from becoming bitterness? I know what I'm doing about mine.

How about that even in the ED specialist world they can't agree to a single principle or organize to hold their fellow experts accountable? That dissent in the field is considered more dangerous than poor practice? That sham treatments and evidence-based treatments are indistinguishable to the public, the media, and funding agencies? Not even that evidence, where it exists, can be dismissed without penalty by law or certification or even conscience?

So YOU are not doing these things? Thank you! And things are better than they were? I agree.

They still suck, however. Anger is appropriate. Rage is natural. There is SO MUCH TO DO and it isn't going to happen by butterfly and Kumbaya alone. It is going to take some anger, some motivation, some confrontation. People will have to be challenged. Standards will have to be created. Offense will be taken. Heads will roll.

"Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean."
Maya Angelou

In fact, it's really our responsibility to be angry. On behalf of those families who are just about to find out how hard it is to get good information and good treatment. On behalf of the young people who trust their parents and the adults in their lives to recognize and intervene when they are in danger but will be disappointed. On behalf of the mothers and fathers who will only discover after they've put their trust in a succession of inadequate or even harmful solutions that there were any alternatives.

On behalf of our recovered children and friends whose own precious children will be at risk.

If my "anger" troubles you, I have to ask you: where's yours?

July 24, 2012

Three weeks

Three weeks in one very small car with two lanky teens.
57 meals.
9 states.
Four grandparents.
Two uncles and one aunt.
Many old friends.
One crab race.
Lots of ducks and at least two loons.
30 hours driving round trip.
One deflated tire.
One day trip to Quebec.
Three beds.
Three Chinese meals.
One Italian.
Two new "G" skills: genealogy research and grilling.
Five different website server rescue missions, two email server moves.
One mommy meltdown.
One water park, one lake, two ponds.
Left wallet on top of car at gas station: once.
Umpteen toll booths.
One spectacular rainstorm.
Several shades of melanin enhancement.
A fresh raspberry pie on arrival.
An art deco statuette dancing on my desk!

July 17, 2012

the Internet is reading my mind

Things I learn when catching up on the blogosphere with my toes in a lake:

That Charlotte needs to be put in charge of parenting through an eating disorder.

That as dumb as pinning EDs on GI Joe may be, there's dumb and dumber trivialization of mental illness and other people are calling b*&%s(*t, too, as in No, the web is not driving us mad.

That tired ideas about parenting and eating disorders still live and thrive under a new kind of packaging that starts out saying "This isn't your fault" but ties it up with a "here's where you need fixing." I'm sorry folks, but saying "some shared characteristics exist in families where an eating disorder is present" is not only demonstrably and maddeningly untrue but it is "blaming." While patients with mental illness do often report the people around them acting in certain ways that doesn't make those observations true. I know it is hard to give up on the idea of cold, disconnected, over-bearing, self-involved parents but as long as you base your family interventions on these false assumptions and employ confirmation bias to evaluate your efforts, you risk harming the patients you want to help. Parents of eating disorder patients are much like all parents: good, bad, and in between. The diagnosis of our children tells you nothing, NOTHING, about our families or even the patient except that they have this mental illness. 

That xkcd is reading my blog.

July 16, 2012

her husband's neck

Dear, wise Colleen has -- as she often does -- described it well:

"it was a tough position for my husband--to have our well-credentialled professionals saying one thing and his wife saying something very different based on her research and other parents' experience. The poor guy's head was going back and forth like watching Wimbledon at our therapy sessions when I challenged our daughter's therapist. Who should he believe? The professionals? His wife? He wants to be a responsible parent but where is the safe path?"

This is the central dilemma. Parents are rarely told all the options -- in some health systems and most financial situations there are no options. We are told what the clinician in front of us believes and has on offer. THEY usually don't know there is any other way.

If, by chance or out of frustration, we go searching for more information and discover that there are plenty of other ideas out there we can't just take our marbles and leave. We have spouses and other professionals and often OUR OWN DOUBT in the face of a terrifying diagnosis we never planned to face.

There is no central authority to consult, no Whatthewhatipedia, no "See honey, I was right." It's just my intellect and instinct against yours.

Because even in the "field," there is no agreement. Not one single fact about eating disorders or their treatment. Not even the definition.

When I ask leading thinkers on this, their answer is often "Well, the family should get a new provider because WE don't do that." Except how is a family to know which WE to choose?

Until the clinics and clinicians and health systems and insurance companies start holding one another accountable it will be left to us, the consumers -- and that means parents, folks -- to MAKE them do so. We may need to do a little re-feeding protocol: "I'm sorry this is difficult for you but we love you too much to let you continue to starve families of the support they need. We're going to sit here until you come up with some standards and some consequences for those who don't follow them. We're not going anywhere, and neither are you. One more bite now, you can do it!"

July 14, 2012

it's not the heat, it's the timidity

"Do one thing every day that scares you."

Well, Eleanor, done for the week at least.
Souvenir. Remarkably like a
hospital ID, no?

Brothers and I took the kids to a water park the other day. Everyone assumed, as I did, that I would not swim. I'm not the fun sibling and there were two uncles there to do all that. I'm the sit by the pool and read kind of mom. I was interested in the wifi.

But the Lazy River looked nice. I swam. The family was surprised.

Did the green one. 
Of course, those insane water slides were not for me. But for no good reason I looked up and thought: it's not that I don't WANT to, it's that I'm scared. I was curious. I didn't like to think I couldn't do it. It took the kindness of both brothers and very patient and caring escort by the one who took the front seat but, inexplicably and before I could perseverate too long, I walked up those stairs and clambered onto an inner tube for two and FELL DOWN SEVERAL STORIES AT GREAT SPEED IN ENDLESS SPIRALS in a cheerfully colored tube.

And then I went in the bathroom and sobbed until I stopped shaking. 

Don't know when I've been quite that
relieved to come to a rest.
I did it. Who knew?

Terribly glad I did. Won't ever do it again, of course. But damn it, I feel brave as hell. 

And my son's face when he saw I'd done it was priceless!

clam racing

On vacation on a lovely lake where our last evening's entertainment was... setting up a clam race. Results were not available until the next morning, when the audience favorite had managed to make it about 30 feet. Full results impossible as racers had little competitive spirit and were impossible to distinguish from one another.

Meanwhile the humans are circling one another in similarly non-linear fashion: sleeping in, eating whenever the mood strikes, completely without work ethic or purpose. You'd think there was nothing to do all day but drink lemonade and cool our feet in the water and be silly.

July 13, 2012

WWJIJD to your self esteem?

I'm struggling with my skin color today.
I know it's the Daily Fail but still:

Action figures expose boys to unattainable and unrealistic body images

saps my will to live. 

Really, folks? Seeing people that are thinner, stronger, taller, better looking... this causes people to lose their minds? Right.

Unrealistic plasticity
"What would GI Joe do" to your self-esteem, I wonder.

unrealistic celestiality - children may dream of flying
Oh, dear. Now I feel bad about my hair.
Let's have a reality check: do children live at this absurdly fragile a mental state? Society values and rewards any number of qualities but we don't go mad from the want of the them. We don't get mental illness from exposure to unrealistic images or ideas; our mental illnesses use unrealistic standards to make us ill.

Eating disorders are deadly serious. Let's not trivialize them with specious connections that make no sense. We need to call B*&^s(*t on this crap.

** Oh, and this goes for Size Zero models and Barbies, too.

July 11, 2012

I'm not blaming you, I'm holding you accountable.

Parents don't cause eating disorders. We don't trigger, contribute to, or encourage them. Our loved ones are born with a predisposition that that we can't cause even if we tried. The predisposition is relatively rare and the environmental factors associated with triggering them are nearly ubiquitous and have little effect on the population compared to those who fall ill.

But that's just the cause part. We CAN fail to recognize the signs and act. We DO contribute to overall mental health and to the course of illness if present. We CAN allow the illness to guide our actions.

It's true: some parents fail their kids. Some of us get sucked into guilt and responsibility and become enablers as a result. Other parents simply refuse to cause distress for their kid, or endure the temporary hate and ugliness of what needs to be done. Too often we believe nonsense others sell us that appeals to our weaknesses or vanity or just plain fear. Parents discover there isn't money, enough professional help, government funding, nearby clinics, support from friends and family, and insurance coverage and just settle or quit.

I'm the first person to defend parents as a group and to give all parents the benefit of the doubt. But you know what? I'm also the first to hold us responsible for what we do in response, too. Not that we can always stop the course of the illness -- sometimes we truly can not -- or control all the circumstances. But too often parents just decide they know enough, have done enough, and feel unequal to the necessary tasks. We keep thinking there's another answer, another response that's easier. We keep asking the same questions but don't want to hear the answers, leave it to others to tell us what to do, and fail to see our own complicity in the dynamic keeping the person ill.

The point is, it's not ABOUT us or our comfort. Fear, weakness, lack of information, helplessness, exhaustion: these are OUR problems to solve. The way the illness distorts their thinking and robs them of insight and makes them say or do hurtful things: that's reasonable and expected. It is our job, no matter how hard, to do it anyway. WE became parents. Our kids got a bad hand of cards. But eating disorders are treatable illnesses. It sucks. It isn't about us. It's about what they need from us.

As harsh as I feel as I say this, there is no greater cruelty than regret.

Parents are professionals

Eating Disorders Review has a new issue online and it includes a comprehensive article on the Keynote presentation by Lilienfeld. During that speech I was cheering and tweeting and nodding and wishing you all were there. I blogged a tiny bit on it, Carrie and others did more, but the EDR article is the kind of access to the professional ED world that I wish more parents had access to and sought out.

We parents need to care what the professional world is talking about amongst themselves. I go to these conferences and participate but we need more families doing so. There are those who say this is inappropriate or that professionals have some sort of special club or privilege: that's a myth. I wish it was true! 

The eating disorders "community" is really a number of somewhat overlapping social groups and a number of trade organizations whose chief goals are professional development and marketing. Although some names are known to all, and some domains of research are commonly referred to, the truth is that most of the ED world doesn't talk to or listen to one another. There's nothing that is agreed upon. No one field or level of professionalism has ownership or requires accountability. There are small groups who mostly only know or deal with one another. It isn't just a research-clinical gap, there is a lack of any common principles or practices or beliefs.

One thing parents can do is read and familiarize ourselves with everything we can, including professional journals. We can also hold opinions, and we can interact with the professionals out there publishing and speaking and doing advocacy. There is no line, really, between professionals and the public. There is no certification or professional guild that makes one person an expert on eating disorders and someone else an outsider. We are not outsiders. 

In a field with NO consensus, NO standards, and no professional certification we parents - and patients and concerned members of the public - have a right and a responsibility to inform ourselves and form opinions based on the facts.

July 10, 2012

Nicholas Cage, at your service

Life is often dull, sometimes painful, and all too necessarily serious. Thank goodness for unplanned laughter and being a good sport. I needed this:

Girl Accidentally Emails Prospective Employer Pic Of Nic Cage, Should Be Hired Immediately

July 9, 2012

worse than a scandal

A grieving dad gets angry after losing his daughter to an addiction.
"If you're an addict, you're left to die," he says. "It's an incredible indictment on our country that we leave people to their own devices. It's worse than a scandal; it's a disgrace. We've got to get people treated quicker."

July 5, 2012

fresh paint and the glowing eye dog

Our house is 150 or so years old, in parts, and constantly requires repairs and shoring up. This spring we finally broke down and had the 1950s-era wiring ripped out and replaced. This costly, time-consuming but mostly invisible improvement has surely made us safer but also required opening up and plastering back in many walls that were already unsightly and painted in inexplicable shades of pink from the former owners.

This was an excuse to have several rooms repaired and painted. It's heavenly. I didn't realize how much I needed this until it was done - and beautifully - in nice cool blues and greens...

But what's cracking me up at the moment when looking at the before and after photos is the glowing eye dog!