October 16, 2014

Atonement, humility, and the future of mental health care

It's no secret that there is enormous tension within the mental health community. As much as folks like to say we should all get along, row together, collaborate... it rarely works that way. We only get along when we're off in our silos not interacting or competing for the same scarce resources. We all mean well but there are actual ongoing disagreements that keep us from being on that mythical "same page" we all wish for.

Personally, I don't think we're going to move forward on mental health advocacy until we do a better job WITHIN the community on communication and consensus. Unfortunately, that is largely taboo. Conflict among us is not welcome and is seen as divisive and, worse, unnecessary. All enemies of the cause are seen as outside, other. That attitude, of course, believes the answer is in everyone getting on OUR particular page. If only everyone saw the light, if only everyone saw that I am right!

I say, let's embrace dissent and disagreement. Let's actually talk with those with whom we disagree. Meet, eat, stroll, play checkers, eat cake. Let's get it all out there openly. Is that worse, really, than the politicking and the back-chatter? I'd be glad to be wrong, actually, if it led to change. 

I have a page. I'm on that page because I am intellectually and, no doubt, emotionally invested and convinced of it. It's a complex page, not quite like anyone else's. I write it. I edit it.

Happily, my page is 
in many parts shared by others. I'd have to say as time goes on more and more people are on my page, some on more lines than others. I feel these days as if I'm in a booklet if not a book, and no longer a nuisance flyer floating in the wind.

I'm proud to say that I read very largely from NIMH Director, Dr. Thomas Insel's page. I'd probably edit a few phrases or cram some things in the margin, but it's a darn good page to start from. This annoys some people I know and admire. I guess it would be impossible to get everyone, even all the well-meaning and thoughtful folks, entirely into the same book not to mention page. But for heroes, teachers, and fresh thinking I don't think you can beat him. And, happily again, the guy is the head of modern psychiatry in this country and widely admired around the world.


I am cheering for Dr. Insel's recent statement, one that many of us need: "on Mental Illness Awareness Week, my call is for humility."
Fear and distrust -- often justified and understandable -- can make people lash out in ways they otherwise would not. Kindness, and mutual respect, can be lost in the process. I have many friends with whom I disagree in part or wholly on mental health treatment and policy. That is expected and probably necessary. But humility and plain old kindness don't have to be withdrawn. 

I do not mean that people should stop speaking up, or avoid conflict, or walk away. The opposite:  my hope is in engagement not just in spite of but BECAUSE of disagreement. We may not have a choice. It used to be that advocates and providers could exist in little islands on their own. We are now more and more connected through various networks that intersect. Our various beliefs and methods and, yes, bad habits, are all in the mix. I celebrate that. It may not always be pleasant, but none of us are in it for the fun: we want patients and their families to suffer less, thrive more, and for the public to understand and support our community.

October 14, 2014

"Without a parachute" guest blog post by a mum

Thank you to mommarexic from Oxfordshire UK for this guest blog post!

"You have been told that in order to help cure you of your fear of heights you need to jump out of a plane. You have somehow been persuaded to get on the plane.  Perhaps you are an inpatient in a psychiatric unit because of your irrational fear of heights and you know that you have to comply with these ‘treatments’ to ever hope to be discharged.  You aren’t actually that sure that you have a fear of heights, but apparently you meet the national criteria for Acrophobia.  You actually think that a fear of falling off high things resulting in serious injury or even death is a healthy thing. Too many people are not afraid enough and the cost to the health service of treating the injuries these people sustain is a problem, so more people should be like you. You don’t see why jumping out of a plane is necessary to make you better, couldn’t you just look out of an upstairs window?  Heck, you could even open the window if you had to.

Anyway you have reluctantly agreed to get on the plane.  It is a twin engine plane, with only basic facilities on board.  No nice comfy airline seats, or in-flight entertainment.  As the engines start-up it is very noisy and the whole plane vibrates and rattles and you start to feel very nervous about the whole thing, wishing you had never agreed to get on the plane.  They buckle you in to your seat.
You start to tense up, holding on very tightly to the edges of your seat, looking around you, trying to see where the exits are. No-one has done a safety demonstration, you wonder how good the risk assessments have been and whether they have checked all the equipment properly.  As the plane starts to move you begin to wish you had tried to get off while the plane was still stationary and wonder if it is moving too fast to jump off now.  But you know if you do that they will say you are still no better and you will never get discharged.

The plane starts to climb to the altitude necessary, your heart is beating so hard you can feel it in your throat.  Your palms are sweaty and your stomach is churning.  The person with you is watching you to see how you are reacting so you try to appear calm but it is hard when you feel so scared.  They are saying reassuring things to you and you are trying to believe them.  They are playing some music over the loud speaker and you try to focus on that instead of the fear.

The assistant starts to unbuckle their harness and you realise with a lurch of fear that it must be nearly time to jump.  They come over and sit next to you and start to shout over the noise of the engines instruction about what is going to happen. 

It suddenly occurs to you that you have not been shown how to use the equipment.  To your horror when you point this out the assistant says “what equipment?”  The parachute! You need to know how it works and when to pull the string etc.  The assistant says “there’s no parachute, we are just jumping out of the plane”. You realise what you hadn’t noticed before.  There are no parachute like bundles in the plane, it is empty except for the odd bit of rubbish and a few old tools.   Everything goes into slow motion, the world seems to have paused for a moment, and you take a few seconds to register what you have just heard.  No parachute?  You must have heard wrong.  That can’t be right.  No you have heard wrong.  You ask them to repeat what they said.  It is no better the second time.  You heard right, no parachute.  Surely they are mistaken.  No they say, this is what they have been told to do, it is the current NICE recommended treatment for Acrophobia and is 100% effective at curing people’s fear of heights.  Everyone who has done it has not been afraid of heights afterwards. It occurs to you that that is probably because they are dead. When you say this they laugh at what they seem to think is a witty comment.

You point out that they have not done a safety check and that you are not happy about jumping out of an unsafe plane.  They say they are happy to get you the log book that shows the plane has been checked and you say that you would like to see it.  They show you the relevant page and you ask them to talk you through all the ticks and checks  You are not really listening but while they are doing this at least you are not being pushed out of a plane.  They have stopped speaking, they have been through it all and are looking expectantly at you. You think quickly and thank them for that information, that it would appear the plane has been checked, but how about the pilot?  Are they sure he or she is appropriately qualified to be doing this?  After all they have the important job of letting you know when it is safe to jump so could they provide you with some credentials please.  They look confused but in the end seem to think it is a reasonable request and go off to the cock pit and come back with the pilot’s license and record of previous jumps etc.  You smile politely and thank them for their patience but could they also just double check that this was the right day for you to be doing the jump.  You had a feeling it was tomorrow and could they please check.  They have realised that you are just stalling for time and say the time has come for the jump so no more questions or checks. You argue that they must be wrong, you ask them to check with someone more senior, you ask if you can speak to the person in charge, you say you no longer consent to this treatment.  They say that they are the most senior person on the plane and that the other people are unavailable, but crucially, there is no radio on the plane so communication is not possible.  They tell you again not to worry, it is alright they have done this before. 

They don’t appear to be taking any notice of your concerns they are speaking to the pilot behind the closed door at the front of the plane to check how long before they are over the target area and if they are at the right altitude etc.  While they are busy you unbuckle your harness. You are pacing around the plane, looking out the windows.  The plane is extremely high, just looking out the windows makes you feel sick.  You say you don’t feel well. The assistant points out that that is because you have a fear of heights.  You reply that it’s a fear of death not heights and she should shut up because she clearly has no idea what she is doing and should be struck off.  Is she going to be jumping out of the plane?  She says no of course not, she doesn’t have Acrophobia.  You tell her you actually don’t have Acrophobia and never have done and they have all got it wrong. This gets no response.  It’s as if she was expecting you to say that.

You are getting desperate now.  You have to get off this plane but not by jumping out.  You try telling the assistant you don’t consent.  You can’t do it today, maybe you could build up to it. Perhaps today just being up this high is a good start?  Would it be enough just to stick you head out of the door?  No. What about you whole upper body?  Again no. You promise you will do it tomorrow, you just need more time to get used to the idea.  This is not acceptable apparently, it has to be today, while they have the plane available.  You tell her this treatment is not going to work for you.  You actually feel more afraid of heights now than you ever did.  It’s making you worse, can’t they see that!  You are pleading. Nothing is making an impact.  The assistant is still getting ready to have you jump out of the plane.

Your fear reaches a new height.  You are entering blind panic.  You start to shout and cry.  You move to the front of the plane.  You are hammering on the pilot’s door trying to get them to open up.  You are shouting through the door that the person in here is mad and they are trying to kill you.  You are begging them to make an emergency landing, you are having a heart attack, you can feel your heart nearly bursting in your chest.  Your chest is burning, you can’t catch your breath.  You say they must be too high, aren’t you supposed to have oxygen or something?  Your hands and nails are starting to bleed from the banging and scratching at the metal door but you don’t care, the blood seems to represent the horror of what they are doing to you.  Maybe the sight of the blood will bring them to their senses and stop this.  It doesn’t. The assistant is starting to look a little cross.

She starts to approach you warily.  She is calmly asking you to calm down, to breathe normally, to sit back in your seat.  She’s saying it’s ok, you can do this.  It’s fine, it’s part of what is going to make you better, it’s going to help you get closer to where you want to be – home.

She is clearly insane.  You tell her this. In order to make your point you add some heavy duty swear words.  She is unmoved.  She is clearly used to this.  You look around you and pick up the nearest heavy object you can find.  Some sort of a wrench.  You hold it in front of you.  You tell her not to come any closer, to make your point you hit out at the surrounding fixtures and fittings showing what damage you can do.  She is still carefully approaching you. 

You realise that the noise in the cabin has increased markedly and that everything is being blown around in a great rushing wind.  While you were trying to get the pilot’s attention, she has opened the side door and the sky and ground below are rushing past.  The noise is worse than ever so that you can barely hear yourself think. You are frozen with fear.  She had taken the wrench off you and is moving you closer to the hatch.  You know you have lost and what follows is inevitable. You try one last time to push her out of the door first but she has been taught some special moves just for this eventuality and the last thing you see is her receding face mouthing ‘well done’ as you fall.

Now replace the flight with meal time and the jump with food.  This is pretty much what it is like to have anorexia and be asked to eat a meal with carbohydrates, fats and protein in it, followed by a nice sweet pudding.  Everyone is insane, they don’t know what they are doing, they are trying to kill you (or make you fat which is the same thing).  What would you do to stop someone making you jump out of a plane without a parachute?  Lie, cry, scream, swear, use violence? So no surprise these are the reactions we see when we ask people with anorexia to eat.  The fear is overwhelming.
Of course in the case of the person with anorexia, they find themselves floating gently to the ground landing on both feet in a beautiful meadow where the sun is shining and the grass is green and birds are sweetly singing.  Then hopefully the next time they take the same trip, they won’t be so scared until jumping out of the plane will be just a normal part of their day, like eating meals for example." 

October 13, 2014

Something Fishy about an eating disorder site's information

yes, this is from a cigarette ad for "Slims"
but you get my point.
I wrote in my first book about the somethingfishy.org site ten years ago as one of the most painful incidents in our family's experience with eating disorders. At that time I felt as alone as any parent facing this illness does anyway, but with a special twist: I felt alone AMONG the parents in the same situation. There were so few people who understood, and few places I could discuss it, but even among them I was different and often unwelcome.

When I was asked to leave SF, the only place on the Internet or "real" life I knew of with other parents on it, I was crushed. Yes, I had a different view. Yes, I disagreed with others. Yet it hurt more than I can say to be exiled.

I had already been upbraided and disparaged. I was not unaware that my views upset people. What I was saying about feeding your kids, about it not being our fault, about brain issues was wildly unwelcome. But I remember the day afterward when I went to my computer and couldn't go there any more. The door was shut. I found it humiliating and unfair and cruel. I cried a lot. For a while after that if my young son saw me sad he'd come pat me on the back and ask if it was "those fishes."

I licked my wounds and moved on. I started another online forum as an alternative, a community that went on to start two organizations for parents (Maudsley Parents & F.E.A.S.T.) I have seen the ideas that got me exiled go from "controversial" and offensive to accepted if not welcomed. The ED world has changed, for the most part. It took a lot of folks a lot of work to get us here.

At the time, though, I was actually scared of the backlash. I considered being silent about what I experienced there. Who was I to object?

I realize now that what I experienced was classic social control, and that I allowed myself to be intimidated. It is HARD to stand up for your beliefs and for others when you feel alone. It is hard to be sent away because you won't go along with what you believe is wrong. In retrospect we can see the right path but at the time.... you don't. Feeling alone, and not wanting to be a troublemaker, and wanting to be pleasing, these all get in your way. You hear the criticism and you hear the gossip and even being "right" doesn't seem like enough. Your ego gets bruised. You doubt yourself.

But things have changed. That's a lovely realization. That's a fantastic realization. We've come a long way. It is okay to talk about brains, to talk about food, to encourage parents to get in and not butt out. We don't need to apologize and defer; we can act and we can support one another instead of pulling one another back down.

Yet, the Something Fishy site is still there and the content that was out of date and harmful to parents in 2002 is still there and still causing ongoing harm. A group of wonderful activist parents are fed up and are trying to get that fixed. They are speaking up and asking all of us to do so as well.

The Something Fishy site needs to be changed. The former owners (CRC) who bought it from the original couple who created it have benefitted from years of SEO and clicks that direct people to their referral lines. CRC and all the other advertisers have had many years and countless profits from the site without changing that content.

CRC has responded to calls to take down or change the content with the answer that they no longer own it. They did own and host this information for a long time, until earlier this year, so that is disappointing. Many of us have asked over the years many times for change there. It was outdated and harmful then, and countless families and patients have been influenced by it. Every day countless people are, still.

The new owners, who are still unclear on their identity and goals, say they want to make the site positive. I say they should make it RIGHT. Take down the archaic and harmful content. Be part of the present. I did not agree, philosophically, with the original owners but they were sincere. The owners and the users engaged with the site in good faith. I hope more people step up to ask that the good faith be honored by taking down or updating the site.

October 12, 2014

Cubs for Coping

I voted!

Nicole Javorsky has been nominated for  unite4:good's program called the 4:inspiration project. We are hoping to spread out word in the community for people to vote for her, so Cubs for Coping can get more funding and she could receive a trip to the 2015 unite4:humanity awards in Los Angeles on February 19, 2015. 

You can vote each and every day at the link below for the month of October. 

About  unite4:good:
unite4:good is a groundbreaking, new movement to inspire and empower positive, global change through acts of kindness. By creating new programs and uniting individuals and organizations in innovative ways, we are igniting positive and lasting change on a global scale. unite4:good is encouraging everyone to inspire, empower, share, and love.
More information about Cubs for Coping:
Cubs for Coping provides hospitals, homeless shelters and eating disorder programs with handmade teddy bears to spread hope. Young people already have a lot to handle. Children and teens who face hospitalization, homelessness or eating disorders have additional stress to deal with. Nicole started Cubs for Coping to remind young people facing tough times that they are not alone. she knew firsthand how difficult it can be to stay in the hospital for an extended period of time, or any length of time at all. At age 14 when Nicole was hospitalized for an eating disorder, she realized that being in the hospital was even lonelier and stressful than she had imagined. Through Cubs for Coping, Nicole is working to alleviate the challenge of helping young people feel more comfortable during times of need. Personalized items remind people that others care about them. Research studies have also found that teddy bears can promote positive feelings and help mitigate stress. We support the work of programs for youth in homeless shelters and the child life programs in hospitals by donating the handmade teddy bears. So far Cubs for Coping has donated 145 handmade bears!

October 9, 2014

Patients direct

www.gofundme.com/d500a0
Pam
I have a policy of not advising eating disorder patients. I do not correspond with patients, as a rule, because I do not want to hold myself out as some sort of expert or to offer support that is empty. I believe deeply that eating disorder sufferers need and deserve support on the ground and that I should never interpose myself into that equation.

Still, although all I am is a mother and that is all I can speak to, I hear from a lot of patients. It is an artificial boundary, really, on the Internet. I hear from and about sufferers all the time. I want to mother them all. I want to surround each individual person with the support team that I believe will help them: hold a line against ED, provide access to appropriate medical monitoring, counseling, and provide caring and compassionate companionship.

I believe in full recovery. For every single patient. I reject the concept of "chronic" sufferers because I believe society and treatment has failed them and not the other way around. If someone is suffering long term from an eating disorder I blame our legal and ethical systems, our societal ignorance about mental illness, poor clinical training, the glacial speed of data to practice, short-term thinking on the part of funders, and tragic lack of connection within families. I blame the nature of ED. I do not ever blame patients for their state and I challenge anyone to justify letting people suffer without the appropriate care we all know can be available to all.

Yet people do suffer. Often alone and isolated. I care about all of them, but what about each one? The need is so great and the obstacles so many: I don't have money to offer, or a bed in my home, or a direct line to Oprah or Bill Gates.

So when one of those sufferers reaches out to me, it touches me. I know that I may be the only human being who is at that moment listening, if impotently. I always believe that if only I could mobilize the help on the ground... I often do not know exactly where this person is, or whether they would even open their hearts to me if ED knew that I really was next door or at the door. I end up working at the big picture: laws and systems and societal change.

Yet, every once in a while I break my rules. Rarely, and with no particular fairness to it because there really can't be. I am just a mom at a laptop. No one deserves help more than another. I am powerless to help, and yet I care.

Yesterday I was asked very humbly by a Canadian woman named Pam to give her any bit of my time. She's suffering from an eating disorder and a terrible burn injury. She is isolated and in pain and suffering but what she wants to do is help people. She wants to recover and work toward fire safety and eating disorders awareness. She has chosen a treatment option she wants to pursue. She has put herself out there and asked the world for help.

She is willing to engage in a research study, be in the media for access to care, to find a way. Her health is deteriorating.

We cannot, as individuals, help everyone. But we can each do a little bit for someone. We can show that individual human being we care or we can turn away.

"That fire didn't kill me," Pam says. "And I don't want anorexia to either."

October 8, 2014

Unafraid of food, and food puns!


When I first started to learn about eating disorders, like, really learn about them outside of "very special Afterschool TV dramas," I was horrified. The books were dark, chilly and dark. Harrowing. Even those who did survive were horribly damaged and suffered longterm trauma and medical consequences. Recovery seemed only barely better than the alternative.

The narrative we read was of victims who survived, barely, and the causes seemed so deep and dark that the eating disorder seemed only an example of the challenges suffered and vanquished.

There's a new narrative now, and more and more recovered folks are getting out there to share it. Marina Abdel Malak tells one of those narratives. She joins people like Carrie Arnold and June Alexander who incorporate the newer science into their very real stories. They don't sugar coat, and they expose ED for the monster it is. Abdel Malak joins Jenni Schaefer in making that story filled with humor, too.

And Marina, well, she loves a pun. She does food puns like no other. She is the reigning queen of food puns! She's worse than my uncle and father when they're on one of those pun riffs that won't end. She refuses to let us languish in the hard parts because she is focused on recovery. On celebrating family and food and the joy that is the reason we all shoot for FULL recovery and not the half life of "almost."

I've been proud to encourage Marina along the way and was delighted to hold her book in my hands. As you can see, it is as sunny as she is, but also real. ED tries to make life dark, but recovered people show us the lightness, even the humor.

Brava, Marina, and may the book reach people with the message that you and I believe in: full recovery, evidence-based treatment planning, food, and family!

October 1, 2014

Capitol Hill #marchagainsted #edclobbyday

Look, mom! What a view!!
I was honored to represent F.E.A.S.T. yesterday at the US Capital during the MOM March convened by MAED, the on-fire Facebook group that is galvanizing Moms (and others) on the Hill this morning. My remarks, delivered in the Washington sun to a really remarkable group of people, are below.

In a world where virtual and on site advocacy meld, the event was Instagrammed and tweeted in real time and a very cool virtual march attendance gathered by Leah Dean at F.E.A.S.T. HQ that gathered families from all over the world in real time as well.

Now, today, the Eating Disorders Coalition and the Alliance for Eating Disorders and MAED are collaborating again to train and mobilize citizens to lobby for the FREED Act and eating disorders awareness all over the Capital. If you are reading this you are probably not there and so, like me, can participate in VIRTUAL LOBBY DAY.

If you think your participation won't matter, you're wrong. If you have ever thought "why don't people know about and care about eating disorders" then you must know that whether you lend a hand when you can is the reason. If it doesn't matter to US when the opportunity arrives to raise your hand why should it to policymakers and the public and journalists?

The ghost of Parents Future
September 30, 2014
Laura Collins Lyster-Mensh

I am today the ghost of parents past.

Guilt-ridden, hidden, and contrite. We listened in terror but were afraid to speak. Ours was a March of worried deference. We heard that our beloved children were damaged irrevocably, that we had failed to protect them or even that we were the perpetrators of unspeakable and un-parental crimes. We went from seer to seer, promise to promise, cure to promised cure. We grabbed at hope, clawed at one another, always willing to do one more thing, one more promise.

We hid our names, covered our shame, accepted our penance.

We were left out of the room, sent away from the table, set to tasks that kept us at an arm’s length and still, we were grateful. We were hopeful even without a plan. We were willing without a role. Until there was no more hope, often, or, exhausted we watched our children recover from a distance.

Over time, over MY short ten years down this rabbit hole, more parents awakened to a newer view. Sometimes invited and sometimes protesting, we were told we need not hide and should not sit back.

We learned about not only hope, but the specific hope that OUR role as parents makes possible. More of us began to join the treatment team, join advocacy, to take our place in supporting our loved ones toward recovery, to healing our families, to sharing information and science and support – openly, joyfully, with optimism and even, at times, humor.

This is an awakening that happened and inspired us from other parent circles. MADD, NAMI, autism circles, many areas of child health have been revolutionized by parents who took their place not just in the examining room but in board rooms and here, in Washington.

Many years ago, when I was still just an individual mom on an unwelcomed mission to change how parents were viewed in eating disorder treatment, I had the opportunity to interview Dr. Thomas Insel, the head of the NIMH and arguably the top psychiatric expert in the world. He told me that eating disorder research and eating disorder treatment would not progress unless and until parents stood up and took their place to make it happen.

That was when I and others gathered the loose coalition of parents out there and created the first international organization of parents of eating disorder patients – many of you here were there and helped make that happen. F.E.A.S.T. was the result: a vibrant network of many thousands of families around the world acting in their homes and in their communities and countries to share evidence-based information and support.

I am the ghost of parents now.

Only a ghost, as I have retired from my ten years of rabble-rousing and turned over the advocacy to the next generation of parents. These parents use their real names. They get things done. They carry pictures of their loved ones with pride and admiration, with optimism and without pity. They expect and sometimes demand change and accountability. They carry the banner of science, not contrition. They are vocal, and their emotions are those of any parent faced with serious illness in a son or daughter. They take their place with other advocates, other movements, other marches, and they do so collaboratively and looking to the future and not the past.

I am the ghost of parents future.

Some will remember this day, here, where we are. Some will count it as the day that defined a new era. Some will mark it as the day they set a course – in their own home and in our nation’s home – for genuine and lasting change.

In the future, too, will be countless families who, because of what you do now and tomorrow in the halls of Congress, who will not remember this day. They will never know who had to show up and speak up to make sure that their loved one lives in a country where an eating disorder is recognized early, treated appropriately, and the family and community are supports and not frightened bystanders. They may have the luxury of never suffering the isolation, the confusion, the self-doubt, and the family-dissolving potential of an eating disorder diagnosis.


They may not ever know, but we do, we will, and we will not rest without that future assured.


September 10, 2014

has F.E.A.S.T. ever done anything for you? A small way to pay it forward

You've heard of F.E.A.S.T. You have probably been helped by, or learned something from, or cheered for something F.E.A.S.T. has done. Every once in a while, F.E.A.S.T. needs a little favor. Here's one:

F.E.A.S.T. needs 10 or more new, positive (4- or 5- star) reviews in 2014 to be placed on the

GREAT NONPROFITS Top-Rated List.

CLICK ON THE ICON BELOW to submit your review! 

August 31, 2014

What is this? HAPPY where?

OK, I am about to make a bunch of parents cry by showing them some dancing. Are you ready, friends?

First, I want you to watch this fun bunch of co-workers. Try to figure out from the video what their industry is: insurance? coffee export? hair products?


Then I want you to enjoy this delightful group of their clients. They seem very, well, HAPPY with the services, whatever they are.
And then I will tell you that the first are the staff at an eating disorder center in Italy. And the second: the parents of the clients. You have to be the parent of an eating disorder patient to get how profound these videos are. You would have to have looked into the eyes of your ill child and wondered if they would live to appreciate how welcome this much JOY and letting loose can be. You would have to have been subjected to all the grim and dire and horrid documentaries and news stories which, rightly, let us know how very scary and dangerous eating disorders are -- to know how needed and life-giving it is to see families take a moment of joyous movement together.

Take that ED. Take that Disturbi del Comportamento Alimentare in any language!

And brava, Palazzo Francisci - and grazie!

Special thanks to my friend, Shan Guisinger, for first sharing these with me.

August 24, 2014

consider the source

One of my dear aunties once wisely reminded me to "consider the source."

When a sour person delivers a sour remark: consider the source. Attend an opera.... don't expect Country & Western.


And, when the Daily Mail publishes a piece on a dearly cherished project, expect a shocking title and photo. I did, and it did, and yet I am absolutely overjoyed.

This picture is awesome:

The other picture (online version only) is not. It's schtoopid, as Charlotte would say, and reflects the shallow pool of visual associations with anorexia nervosa.

My heart fell at the "born with" phrasing. It did. It is tragi-comedic in its misinterpretation of the science and may even perpetuate the very myths we hope to dispel with this research.

But here is the truth, my friends. The Daily Mail is doing more to bring in the necessary DNA samples to #AN25K, and donations, than any of us sitting around wishing and wanting. This article has more correct information about current eating disorder science than 95% of the digital ink spilled daily on the topic. It quotes the right people about the right topic and reaches countless people who wouldn't otherwise stumble onto Charlotte's Helix.

I can control what I type here. When I wrote for my local paper for a decade I had an editor, a copy-editor, an editorial policy, advertisers, and the context of the public's current thinking between me and the public. Those quoted don't get a say in the rest of the piece or the visuals. Headlines, in particular, are at the discretion of the editor. Photos come from banks of keyword-linked copyright-free folders. Science literacy, well, it is what it is. How much of the public is fully literate in the fine points of genetics, heritability, risk, and the actual meaning of "born with?"

For those needing an anthem today, this will be mine.



August 22, 2014

She is dancing toward recovery and for Charlotte's Helix!

You all know how I love to dance, and to share dancing with others. You can imagine my smile and delight at a new friend's idea to spread the word on Charlotte's Helix through dance. Join me in celebrating this young woman's project and the joyful energy she brings to it! Thank you, Anya, for this guest post:

Charlotte’s Helix Project, by Anya

I heard about ‘Charlotte’s Helix’ through a fellow campaigner who I was in contact with. I was overwhelmed by the positive and collective support that was available there. Discovering Charlotte Bevan’s foundation was a lifeline for me because it helped to not only to connect me to alot of online support but it also allowed me to realise how many other people out there had similar experiences or were struggling with the same problems and utilising similar strategies to do so.


Out of gratitude for Charlotte, along with a friend, I donated a dance. However odd it may seem to donate such a thing, it seemed fitting to me. Part of recovery is about reconnecting with positive forms of self-expression. I have always found that dance is an amazing way to celebrate and express what it is to be human.

This small act has led other people getting involved. For example, friends composed music for the dance ensemble, and fellow campaigners offered their DNA to the genetics study. I am now continuing the process of honouring Charlotte’s legacy by finding other dancers to join me in creating choreography that express their identity. An eating disorder does NOT have to define you and through this donation project I found a way of redefining myself. Consequently, I have learnt to delve into new and nurturing ways to support my wellbeing.

I invite anyone who is reading this to join the #DanceYourWayToRecovery# project and donate a dance today.  You don’t need to be the next Darcey Bussel; it is just about having fun and donating to a good cause.

Let the silliness begin!

August 18, 2014

Music and Marching!

It's the first day of school here in our county and boy is it quiet here at home!

This also means it is Marching Band season, and that reminds me of important MUSIC and MARCHING news:

For MARCHING, put the MAED MOM'S MARCH in Washington on your calendar: September 30. I'll be there to say a word or two on F.E.A.S.T., as will many parents I know all ready to take a stand, literally, on eating disorders. Everyone is welcome and everyone is needed. Let's make some noise!

And for MUSIC, there's a lovely Opera event for Charlotte's Helix on September 25. I won't be there except in spirit but many of Charlotte's friends and family and supporters of the Helix will be on hand. There will be gorgeous music by Royal Opera singers, a reading from a new book by a parent about coping with eating disorders, and a special guest, David Robb, who you may recognize as Dr. Clarkson from Downton Abbey (one of Charlotte's favorite shows).

There is a special therapeutic factor to being with others who understand your experience and are doing something together to make things better. Both of these events, within days of one another, are a way to BE THERE and be part of change.

Forward: march!


August 8, 2014

Difficult times, small favors

Our family is going through a difficult time: details are unimportant at this point.

I am mindful not to barrage people with appeals. Most of those I know, especially through this blog, are struggling with something or other and don't need to be asked one single thing: just supported.

I'm also not that good at being the receiver --

But today I am actively hoping that at least 20 of you will do me a specific favor, to help me fulfill a promise that I made a few weeks ago. There is no money involved, it is simple and it is anonymous. I offered to find 20 people from the eating disorder world to spend 60 seconds leaving a message of hope for others at the Project Hope Exchange site.

A few of my friends have done so already and felt really good about it: there was catharsis and healing just in the act of reaching out.

Now that I'm struggling with an elderly family member's adversity I find enormous comfort in the messages of others who have faced similar situations.

I committed to getting messages from the ED community because I know how needed and appreciated it is to hear warmth and feel understood by others with such a confusing and confounding condition. I want there to be a bank of family members, friends, sufferers, and their supporters leaving those "messages in a bottle" for others. YOU NEVER KNOW WHO YOU WILL HELP.

As I said, it's free, it's anonymous, and it will be your good deed for the day. Well, since many of you are generous and kind by nature it may be your 5th or 15th good deed of the day!

Please do this for me so that I can rest easy during this difficult time. All I ask is that you make the recording and then send me an email or leave a message here that you did it. I know you are out there and if you ever wanted to show me you care this is a great time!

My family doesn't need flowers or casseroles at the moment. But, the gift of this message, and supporting me through this difficult time, would be truly priceless to me. Helping others always makes me feel better.

I may not have time to respond immediately, but I am looking for your messages!

PROJECT HOPE EXCHANGE NEWS RELEASE: http://tinyurl.com/l6a8s9w
90-SEC INTRODUCTORY VIDEO: http://tinyurl.com/ny9jatn
PROJECT HOPE EXCHANGE WEBSITEhttp://projecthopeexchange.com/
PSYCHOLOGY TODAY FEATURE ON PHEhttp://tinyurl.com/le39qer
SAMPLE MESSAGES OF HOPE:
Jessica / Heart Attack: http://tinyurl.com/lj289ta
Laura / Eating Disorders: http://tinyurl.com/mt3so8x
Scott / Paralysis: http://tinyurl.com/kxlzefq

NPR/SACRAMENTO SEGMENT ON PHE:

July 22, 2014

Father wants answers on his daughter's death from anorexia nervosa

Averil Hart
help her dad find answers on her death
I met Nic Hart in London when I was there earlier this year for the EDIC conference. He spoke movingly to that audience of his desire to understand the treatment his daughter received, or failed to receive, before her death. Averill was 19 when she died in 2012. Her family wants answers about why. Mr. Hart and his family and supporters are asking for our help, the parent community that knows the agony and heartbreak of an eating disorder diagnosis, in spreading the word so that the Harts can get the answers they need from the health system charged with her care.

Please visit Averil's site, and subscribe to the blog. Re-tweet and subscribe to Nic's handle, @AverilsDad  Spread the word around the world to let the Harts know that they are not alone, that others care, and that at the very least there should be clear answers from those involved.

July 16, 2014

Charlotte makes it to the House of Commons

Typing this through soggy eyes, please enjoy Charlotte and Charlotte's Helix discussed in the House of Commons during Prime Minister's Questions today.

Way to go to MP Caroline Nokes and the Charlotte's Helix committee.

July 10, 2014

Celebrating Charlotte's Birthday

This week marks six months since Charlotte Bevan died. It doesn't seem that long, and it really isn't. A year ago I this week I was getting on a plane to go see her, and this was the week that we came up with the idea of Charlotte's Helix as a way to continue her legacy of work improving the world for those facing eating disorders. I came home with blue hair and a mission. I still have blue hair and many more have joined the mission!

This week is also the first birthday Charlotte will not have. In her spirit and on her behalf, I and others are committed to celebrating her birthday for her by supporting the Helix.

I'd like to tell Charlotte many things. I'd like to tell her that her dream came true and that the AN25K international project has been extended to the UK. She would want to know that thanks to the generosity of the volunteers, we are one quarter of our way to the initial goal of 1,000 samples. Charlotte would be glad to know that slowly but surely we are raising the necessary £100K to pay for the samples. Charlotte would join me in thanking the donors, the research participants, and the scientists who are making this happen.

We have collectively raised, in increments of a few pounds to $5000 at a time, about a quarter of what we need to reach our goal. Every dollar, pound, euro and yen are valuable to that total.

Last year, I gave away my birthday to Charlotte to show her my support and commitment. Many others joined me and she laughed and maybe even cried at the kind, joyful pledges. Let's celebrate Charlotte's birthday this year by doing what she hoped we would: come together over this project and have some fun doing it.

The wonderful Helix committee in the UK has just announced the "I choose to give" campaign on the Helix site. 

How can you help:
This project was important enough to Charlotte to make it her public legacy. It may change eating disorders forever. 

I miss Charlotte. This is something I can DO about it. How about you?

June 24, 2014

Mother of son with autism and eating disorder appeals for help

Posting by request of this mother:

 Allen Iglesia Aspergers for Severe Eating Disorder

   
Allen will attend the John Hopkins eating disorder program to live a normal healthy life and remove his feeding tube.

Allen had an emergency permanent G-tube inserted in his stomach on May 7 in an emergency surgery to help him sustain nutrients because he does not eat by mouth. He was diagnosed with Scurvy and Malnutrition because of his fear of foods He eats ONLY bread and drink water. Allen is attached to his tube for feeding 14 hours a day and cannot get off the feeding tube until he learns how to eat. Due to his Autism he believes that if he eats food he will die. His eating disorder which almost killed him (hospitalized for 3 weeks) can only be corrected at 2-3 eating disorder clinics in the united states. Insurance does not cover the majority of the costs which will cost the family over $250,000 in medical bills to help Allen live as much a normal life and not need to be attached to a feeding tube for 14 hours a day. Many people do not understand eating disorders especially when the child is diagnosed with Autism and Aspergers.  His fear of foods must be corrected to live a normal life and hopefully get Allen off the tube. In addition due to his aspergers and autism spectrum, this will be a task.

The goal is to get Allen off his tube in the next 4-5 years! No one wants to be attached to a machine 14 hours a day!

June 9, 2014

give hope, get hope

Give hope, get hope, with Project Hope Exchange:


For an interview with Jeff Bell, A2A Founder, please listen to this recent radio interview. And if you listen very carefully you may even hear another voice you recognize!


June 6, 2014

F.E.A.S.T. Applauds the Academy for Eating Disorders stand against BMI testing in schools

Parents, this is something we can all celebrate and get behind. Show F.E.A.S.T. and AED know this matters. Tweet, forward, print, and "like" the heck out of this, my friends!



F.E.A.S.T. Applauds the Academy for Eating Disorder's stand on BMI testing in schools

April 12, 2014

Thank you, Cynthia Bulik, and AED, and mom & dad

I just realized it has been TWO WEEKS since I was in New York for the Academy for Eating Disorders annual conference. Jeepers. I haven't but barely caught up on email not to mention laundry and bills.

But I want to take time now to thank some people. It's kinda "emotionable," as my kids put it. I can't do this without the risk of sounding braggy, because (squee!) first I have to share that I got an award.

A very nervous Laura with her
lovely and inspirational parents
and wonderful, wonderful hubby.
The AED Meehan/Hartley Award for Public Service and Advocacy, to be precise. I'm rather blown away by this, actually. The list of previous winners is impressive, and I don't take this for granted. When, ten years ago, I took on this advocacy work from my kitchen I had hoped to make some small change in how parents were viewed in the ED field. I accepted the award with full understanding of the shoulders on which I stood, and those I hoped would stand on mine.

I have enjoyed my work. I will treasure the accolades, and will in my dotage surely be boring my grandkids with the generous and funny and humbling speech by Dr. Cynthia Bulik introducing my award. I am deeply grateful to Cindy's confederates, especially Leah Dean, for the tributes. It's way embarrassing, but I am enjoying it. There have been times in the past ten years when knowing that I would be thanked for my rabble-rousing would have seemed like a dream you wake up from, not one we carried home on a brass plate.

Thank you, Cindy.
Thank you.
You see, getting this award from the AED wasn't uncontroversial. Not only are there many hard-working advocates and activists out there in our field but I have not been a particularly easy one to like. I'm a pain in the ass. Instead of joining the advocates in the field to laud and support the direction of advocacy I have been a voice questioning and criticizing "in the family." Not the ideal way to make friends or influence people. I don't think it is an exaggeration to say there are many folks who genuinely resent my voice and my work. So I get it that this was a statement of support for the messy, but necessary, work of challenging paradigms.

I had a speech prepared, but in the moment my eyes were clouded and my glasses unclear so I did not deliver what I'd planned, exactly, but offer it here.

"Today is a great day to be an advocate, when I am given an award and kind words and wear my best shoes.

It isn't always fun, however. A friend here at AED who I consider one of many mentors in this room told me some time back that it isn't about being right, it is about relationships. At the time I resented that, but it was true. You all know this best as this is a room full of people who do relationships for a living.

Today I want to acknowledge some of the relationships that bring me here.

First, my parents, in the front row, who taught me when I see something wrong not to complain, but to do something about it. To respect people even if you disagree with the views they hold.

And my husband, also here today, who is like many of the husbands and partners of advocates the one who made it possible for me to take the time to do this work. We don't appreciate the dads enough. They're less visible, but they are heroes of advocacy. This man is a hero, for letting me turn our dining room table into an international organization and dye my hair blue for DNA research without warning him.

I am deeply grateful to my fellow parent advocates on whose shoulders my work has stood and the momentum and credibility they offer advocates now. 

To Charlotte, in particular, for her example in life and in dying, to get on with it without whining.

Deep gratitude to the parents and community of FEAST, especially those volunteers who now take on the work and keep it going, like Leah Dean our Executive Director and our new Outreach Director, Lisa Laborde, and the board.

Thank you, so much, to my colleagues in the eating disorder professional world, and the advocates, for their support and their mentorship - and their own challenges to me that I learn from every day. Thank you for accepting and even welcoming parents into the advocacy, the field, and into the treatment of our loved ones.

And that is the point. My greatest gratitude goes to my dear daughter, whose illness moved me to do this work. It is the patients who all of us are here for, they are what we all share and care about. Our wonderful, courageous, daughter is my greatest hero."