August 31, 2010
August 30, 2010
This recent season - summer for me, winter for our friends down under - was uncharacteristically hot with interpersonal tensions and false identities and offenses taken and returned. During the same time I noticed (and was caught by) similar tensions on a professional ED forum AND on Facebook. It's like there's a global Internet warming going on!
One of our moderators, "The Mod Squad" as we call ourselves, said something recently that struck me as emblematic of the new world of life by Internet:
"I haven't noticed any deliberately contentious posts, so it would seem that people are taking offence at little things- but then again it is the straws that break the camels backs, and I suppose we are dealing with (and, speaking for myself only here, can be) particularly sensitive camels given the nature of the forum."
Even camels suffer from droughts that go long enough. I'm hoping for some cooling rains, myself.
August 29, 2010
and this quote: "Feeding well today is countercultural" to which I would add that eating normally and feeling good about one's body and relationship to food is downright radical.
(I do separate this from eating disorders, by the way - EDs are an illness that probably has little relationship to poor feeding or society's current dysfunction around food. The biggest relationship between the two, in my opinion, is that when society behaves in a dysfunctional way it slows and blunts our necessary response to the illness when it does appear. WE have to be normal to recognize those who are truly ill.
By way of analogy, during a flu epidemic people started wearing masks and hoarding disinfectant and refusing to shake hands without a doctor's note. This no doubt made it hard to distinguish those with genuine OCD issues about contamination. It probably also led people to 'believe' that cases of OCD were 'caused' by worries about flu. At the same time, a percentage of people with a predisposition toward OCDs probably were exacerbated or even triggered by the overwhelming social anxiety around the epidemic.)
August 28, 2010
You know what? It's terrible, but I find myself doubting that. Or at least I can't relate to it. I used to be like most parents, kvelling over my kid's accomplishments and believing in the power of 'high expectations.' I don't any more.
Now that I've seen the ravages of an obsessive drive for success in so many people I can honestly say that I have not yet met the person who had this drive and wasn't paying dearly in anxiety. Don't get me wrong, I admire people who achieve great things: but now I admire those who balance their lives regardless of achievement more. I think it is possible to have a great work ethic and be a hard and successful worker without being the 'best' or having that as the goal. I am happy for those who feel good about their lives far more than those who achieve outward success.
There's a special mental trap for families with kids who show early promise and accomplishment and then get an eating disorder. Most parents, naturally, want to get back to "normal" and for them that means As and 'bests' and 'honors' - we lose our vocabulary for happy and calm and average. Even 'above average' sounds unfamiliar. But too often that drive for achievement is a drive for perfection that can never be reached and never feel satisfying. For many it is an insatiable hunger of another sort, and can't be maintained without its evil partner: the brain effects of malnourishment.
I would not go so far as to say that recovering from an eating disorder means recovering from perfect grades, but I have a strong suspicion that it is the rare family who feels unalloyed pleasure at a student "beating anorexia to become an A* student." I also wonder how many families feel swept along in the wake of such narratives and pressured to accept the price of an incomplete recovery because society is unable to see this obsessive drive as a possible sign of distress.
All I know is that I read something like that story with sympathy for the parents, not relief. Another reason to hate ED: he makes me suspicious and jaded.
August 27, 2010
I'm very interested in the varying cultures and approaches at different clinics. As harsh a critic as I am of ill-conceived and inadequate treatment I've come to see that there are several ways to intervene successfully and every new place I visit offers me insights into the possibilities. I'm particularly focused on how families are welcomed, educated, supported, and employed in the treatment process.
Kartini's clinic is unique, and I encourage everyone in the eating disorder world to learn more about them. In particular, I would point the field to the difference in how patients and their families are treated when the starting assumption is that the illness is biological in nature and neither chosen nor given. As a starting point this means families are treated as they would be with any grave childhood illness: with compassion, information, and an expectation that they will be working hard alongside the team and patient to bring about full recovery.
That last one is not a message that all clinics are willing to give, and not one some parents want to hear, but years of observing the field leave me unequivocally certain that this illness preys on anything less.
Many people hear me say that we can't blame the parents for the eating disorder but they stop there (often apoplectic with anger). Yet that message is meaningless without the second part: parents have to step up and act. It is our job to do some pretty challenging work, and for a long time. We have to put aside everything, including fear and enmity and past resentments, to do some Olympic parenting for a long time. No clinic can do this for us, and even the best clinic in the world can't make up for our failing to do our job. We have to find a specialist eating disorder clinic that will give us the tools to do our job while they do theirs.
August 26, 2010
"Join Us on Capitol Hill and Make a Difference"
Come to the EDC Lobby Day, September 29th & 30th, 2010
Think only paid lobbyists can influence policy makers? Think again! As a constituent with an important message to share - you too can influence federal policy. Join the Eating Disorders Coalition for our September Lobby Day on Capitol Hill in Washington DC where your voice will make a difference.
This is one of the most important events all year -- and an exciting opportunity to meet directly with your elected officials or their staff about legislation that will impact all those affected by eating disorders.
If this is your first time joining us don't worry; we'll prep you beforehand by teaching you about lobbying and what to expect We will also review the first ever comprehensive eating disorders bill in Congress: the Federal Response to Eliminate Eating Disorders Act (the FREED Act) - for which we will advocate. This bill will provide research funding, prevention grants, and treatment options that will save lives!The EDC needs you, and will put you in a team of activists and walk you through the whole thing. You'll feel confident and powerful as you speak up for the community of Americans affected by eating disorders. I do it every year and always feel better for it. I can't be at this one, I'm sorry to say, but all the more reason why YOU should!!
So there is no need to worry that you don't know what you are doing. During training you will be able to ask questions, practice lobbying and get comfortable speaking up before heading to the halls of Congress."
There aren't that many opportunities to bring so many loved ones together - especially ours that is so spread out. It was an extended moment of celebration and love and knitting of bonds.
Thank you, Erik and Megan, for making family family - with such tender and joyous attention.
And deep gratitude to my whole extended, diverse, well-distributed, dancing family - and our NEW family by way of the lovely, wise, and welcomed sister, Megan.
August 25, 2010
I know, it sounds dry and technical but remember when your child was diagnosed and you first realized how little was known and being done? Didn't you wish that people before you had gotten to work getting the data and moving things forward? Well, YOU are the parents before someone, and your data is important!
Please read and help the F.E.A.S.T. UK Task Force!
August 24, 2010
|Julie, Cruise Director|
In a lovely coincidence, I lived right across from the conference hotel (in a ratty one-room apartment) when I was pregnant with my daughter so I'm feeling all nostalgic and gooey as I look forward to this trip.
August 20, 2010
August 19, 2010
Among the tools that parents need to know about are Dialectical Behavioral Therapy - alongside or instead of FBT/Maudsley for patients with co-morbid personality disorders or other emotional regulation issues. For bulimia, SSRIs and Cognitive Behavioral Therapy are an alternative. For adult patients whose parents are involved many families find the "New Maudsley Method" (nothing to do with FBT/Maudsley except the hospital they originate from) extremely helpful. If home-based re-feeding isn't possible, I believe re-feeding still has to be immediate, non-negotiable, and permanent at whatever setting is available. For situations complicated by co-morbid conditions there need to be creative combinations of options.
I'll keep bringing up FBT/Maudsley until it is routine for it to be offered to families, trust me, but that doesn't make it the last word in treatment.
How about you? What other adjuncts and alternatives do you think parents need to know?
August 17, 2010
Years ago when I started the work I'm doing it was a lonely business. Saying that eating disorders are a mental illness and not a metaphor or choice was shocking. Saying parents are an important asset in recovery was unwelcome. Saying that eating disorders were an enduring feature of human history and not an indictment of society's latest mistakes didn't make me any friends, either.
So allow me a brief moment of unflattering pleasure to know that it is no longer rare to see a media report that debunks old myths and offers real science. Although the media and advocacy world of eating disorders remains laced with older and damaging messages I am heartened by the rapidly rising number of solid references for parents seeking information, and for media stories that don't have to be winced at. Thank you to the reporters and media sources who are doing good stories and asking good questions. I am deeply grateful for the professionals and researchers like the ones quoted in this story for building careers around providing families and patients truly helpful and optimistic care:
"Allow us to be parents again."
Which is, by the way, all I wanted.
August 16, 2010
The Training Institute for Child and Adolescent Eating Disorders will conduct a 2-day workshop on FBT for adolescents with eating disorders this September 13 and 14 at the University of Chicago. For more detail and registration, visit: www.train2treat4ed.com.
It is my hope - no, expectation - that this type of training will become standard and even required for all clinicians treating adolescent eating disorders. NOT having such training strikes me as very odd and indeed questionable when FBT is the treatment with the best evidence of success as first line of intervention. I can understand a clinician deciding not to use FBT in a certain case but can't understand not offering it at all when you are treating this population.
It is time to stop calling it "new" or "controversial." We need to start treating it as normal and expected - making other interventions less necessary and more specific.
I don't know what the difference is between work and time off since the two just seem to be proportions of the other these days. I can't say I'm back at "work" now that I'm home - because I didn't stop working - but I will say that I am glad to be able to plant myself in one place and able to organize myself and my time without (as much) distraction.
Here's news: I'm chagrined and happy to report I only lost it ONCE, which makes me realize how much better I am at managing stress. Years ago it would have taken far less to make me cry, wail, or whine. Either age or experience or better emotional management skills - probably all of the above - have left me better at it all.
My kids were great. When I did have my raised voice weeping moment they hugged me, got me dinner, and got me laughing again. My husband came in on a white horse several times. My mom and grandma and daughter and I kept one another amused...and well-dressed. I got to meet one of my heroes, see leading characters of past lives, join in a truly blessed event, and sit quietly to hear my grandmother's blessings over meals in such a way that defined "grace."
Now, to unpack both email and baggage!
August 15, 2010
August 14, 2010
NAMI WALK MICHIGAN
National Alliance on Mental Illness –NAMI.ORG
DATE: Saturday, September 28, 2010 TIME: Free registration begins at 9 am, Walks 11am-2pm.
LOCATION: Oakland Community College, Oakridge Campus, Farmington, MI
This year’s NAMI Walk event has been moved to the Orchard Ridge Campus of Oakland Community College. Located just off the I-696 expressway, and south of the Orchard Lake Road exit, the event can be easily reached from anywhere in the Southeast Michigan region.
New for this year, participants are asked to bring and donate used athletic shoes for Nike's “Re-USE-A-SHOE DROP OFF.” All brands are welcome. The School of Rock and Robin Moore Band will perform. The Bipolar Journey Exhibit by AstraZeneca will be on display.
All donations and funds collected by walkers will be used to support NAMI programming here in Michigan. Sign up and create a webpage or support a walker or form a team today!
View details at www.namimi.org or call NAMI Michigan 1-800-331-4264.
August 13, 2010
"We are currently running a number of research studies both for individuals who are currently suffering from an eating disorder and also for those who have moved towards recovery (we recruit from all over the country). Involvement in research can be a potentially fulfilling way to help contribute to a better understanding of and, ultimately, better treatment for eating disorders."
This so neatly fits into the emerging understanding of this illness: certain parts of the differences in the brain are stable and others are dependent on nutritional state. We so urgently need to understand the difference and focus our attentions appropriately!
August 12, 2010
August 11, 2010
I agree wholeheartedly with you that parents should trust their instincts and that food, not doctors, gives parents and kids strength.
For too long we parents have assumed that professionals have some secret treatment for anorexia nervosa and other eating disorders. We've been led to believe that if we turn our kids over to them, they'll use great wisdom and scientific knowledge and will know the right cure.
It's an illusion.
The best available evidence is that when parents, not professionals, are in charge, with the right supports, they are best equipped to heal their children and adolescents. Further, the best available evidence shows that food, and lots of it, not talk, is the top priority in recovery.
Our gut parental instinct is to feed our kids when they are starving. That instinct has been side-tracked by well-meaning but misinformed speculation by certain schools of psychotherapy that assume eating disorders are caused by trauma and interpersonal conflict and that anxiety and conflict should be minimized in treatment, not faced head on. That school of thought has done huge damage. It has allowed sufferers to starve to death and it has disabled parents with feelings of unwarranted guilt and powerlessness. It's time for parents to take back the agenda. The older models of treatment have been around for several decades and haven't shown any measurable success. In fact, it's to the point where old theories of treatment are not even being tested any more using modern methods of systematic scientific inquiry. The proponents of the older theories are afraid, in my experience, to subject their methods to public scrutiny.
Our gut instinct as parents includesthe wisdom of earlier generations. Over the ages, peoplehave faced all kinds of fears and anxieties, and as a species we have learned, by trial and error, how toovercome them. My favorite advice is from"Falling off Your Horse; Getting Over an Unscheduled Dismount.
As soon as you can do so, climb back into that saddle, even if its just for a short walk around the arena. This will prevent a single spill from turning into the snowballing
nightmare of anticipating another. Facing fears directly is the only way to overcome them. If we don't, our fears will grow into looming dread. In other words, if you don't get right back on that horse, it will only become harder to do so."
On this forum we say, "If you aren't catching flak, you're not over the target."
Our kids have fallen of their food horses. They need a boost from us to get back on, and they need the boost right away.
Parents of eating disordered kids are,based on my personal experience and confirmed in scientific studies, among the most loving, devoted, conscientious, intelligent and persistent people anywhere. It really is time for us to listen to our instincts. "
August 10, 2010
I have to share what a friend said to me recently:
"... just trying to react to everything will burn you out. I have full time, paid staff and we still work flat out to cover everything. The key matrix to analyze your question therefore would be: does it help the MISSION? The upside of protest is obvious and virtuous but the downside would be increased marginalization of your influence...I am sure you will make the right decision."
The decision? Whether or not to pitch a fit over an offensive cartoon involving parents and eating disorders that was published in a professional newsletter in the eating disorders field.*** Worth the fight? I've decided it isn't. But mostly because of the laughing fit I got from how my friend managed to make me feel empowered to leave the issue alone - mad interpersonal skilz there!
August 9, 2010
I'm so honored to be given the opportunity to do a guest post on Laura's blog. I few months ago I read about an opportunity for artists on this blog to submit their work to a show to benefit the Duke Center for Eating Disorders. The proceeds go to families and patients who are not able to afford treatment for their eating disorder. I submitted my work and 2 of my photographs were chosen!
Art for Eating Disorders is an event on August 12th at the West End Wine Bar in Durham NC for the silent auction of art inspired by recovery, or by eating disorders. The program hopes to inspire discussion on this topic. As a photographer (and designer) I hope to inspire those who are struggling to see the beauty in the world, and see nature's imperfections as beautiful, not flaws. I love to photograph water because for me it is about cleansing, and renewal. If you're able to attend, it's a great cause for an amazing program--thanks!! Plus who doesn't love art and wine?!
I love to help out in any way I can so I'm offering to donate $10 to NEDA and free shipping to anybody who purchases works through my website www.aliciabdesigns.com if they mention reading about this post. Thanks Laura!
**Alicia also has her own team for the October NEDA Walk.
August 8, 2010
August 6, 2010
This is one heck of a week. And as soon as I catch my breath, I'll describe it.