Juggling Life

Fake: A Guest Poet Post

The profile of someone who will develop anorexia includes being a high achiever--I've actually never met cooler kids than in an eating disorder group. This wonderful young woman is in her fight right now. She was also in Washington D.C. lobbying with her mom (from Hawaii!). She recently did a beauty pageant to motivate herself to gain weight and spread eating disorder awareness.

I do not think the consumer, thin-focus culture causes eating disorders, but I do believe that every single one of us needs to learn to think critically about the influences in our world--and how they can brainwash us. I am impressed with this insight from 14-yr old Aislinn Carroll. 

 

I can hear the banter of the emcees.
Girls are bustling around with their makeup teams
Practicing fake smiles
Fake tans
Butt glue
White teeth
Plastic boobs.

Identical 5-inch heels piled in a corner
We treat this like its normal?
Lined up like stock for slaughter
A number pinned to my hip.
My identity: a number.
Objectified?
Check.

A cheery song plays as we walk into the hot lights
Trying to get our eyes wide even though
Our retinas are being burned.
Beauty Hurts.

The judges are looking me up and down
Picking out every flaw.
Did I miss a spot when I shaved?
Did I not tone enough?
Did I eat too much?

Her skin is clearer.
Her hair is longer.
Her waist is smaller.
Her thighs are slimmer.
Her smile is brighter.
She is the winner.

I hold my face still as a pool of tears
Formulates in my eyes.
I pretend to be happy.
To love this girl who never acknowledged me.
She is complimented on her congeniality.
Even though she told me to hold off
On the cookies.

I realized what this all is.

Fake.

 

 

Parent FOR Recovery, not FROM guilt: a Guest Post

This started out as a status update in a closed group on Facebook and it was so amazing I had to ask if I could post it. Nancy Chiado Clarkson is a warm, supportive and very giving woman; one of the many I am lucky to know. She also runs a support group and posted this piece on that blog. 

 

Good morning Dear Mommas ~

As I sit here and read these posts -- especially from the new moms -- I want to come and hug each and every one of you. I want to talk with you personally and give you some hope and light in the darkness you are experiencing. In looking back over the years ED invaded our home and took over our lives the memories are painful indeed.

I know we all want our kids to be happy. That is a mother's dream. However, when ED shows up, they become something we can hardly believe. This, however, is what I want you to believe: Your loved ones have been taken hostage by this disease. They are still there, just unable to find their voice because the one in their head is so loud and constantly reminds them how useless and worthless they are. While your loves ones are still under 18, you need to make some tough decisions for them. They are incapable of seeing what is best for them. They cannot trust themselves, so they trust ED. Will they (ED) get angry? You bet.

For so many years, I parented this disease out of guilt. My decisions made me feel better, but it did nothing to help my daughter. I was so afraid of causing anger, that I walked on eggshells and gave ED a comfortable place to live. I needed to grow a spine of titanium! The threats were ugly, mean, hurtful. However, I adopted the mindset that she could be mad at me for the rest of her life. I had to do what needed to be done to see that she would have a successful life.

Recovery around life, not life around recovery. You cannot have one foot in recovery. You need to be all in, all the time. If they are not well, their life will be one painful struggle after another. It takes time -- years sometimes -- and it is exhausting. Self care is mandatory. Mirror for them what you want for them. When they see us crying and out of control ourselves, it only reinforces what the ED is trying to convince them: look at what you are doing to your family. You are worthless. My daughter shared that tidbit with me after her recovery. I never looked at it that way.

I understand each family dynamic is different and sometimes there is nothing we can do. What we can do, however, is take care of ourselves. Sometimes the change we want, needs to start with us.

Above all else, love them. They are hiding behind the mask called ED and it takes time to trust themselves, love themselves and find themselves.

Know I am always available for a phone chat should you ever need anything. All you need to do is ask. I never want any one of you to feel alone through this journey. We need each other and I thank God each day for Debra who has reached out to us all to keep us afloat.

Hugs, kisses and hope to you all. Hang in their Mommas -- you are stronger than ED ever could hope to be. Lean on us, cry with us.

Taking Stock

What a whirlwind of a month it was--and while it was unusual, there's no doubt that my life is tremendously busy and looks to stay that way for awhile. It confuses me that there's sometimes a sense today of the moral superiority of not being busy--I really do think we all need to honor our wiring. So while busy is making me happy and I am productive, busy I will be. 

Today I am enjoying some quality time with blogs and one can't help but miss the good ol' days. Here I actually met the mysterious and rarely-photographed Suburban Correspondent three weeks or so ago and I didn't even blog it.

SC is fantastic and we could have hung out and chatted for many more hours than we did. It was a highlight in a trip full of highlights. No blog friends at conferences in Coronado and San Antonio, but met and hung out with amazing and brilliant people. Thelma and I spent more waking (and unwaking and bathroom-sharing) moments together than most people can do with their own spouses before the nerves start to fray. And the nerves didn't fray. I think that's pretty special.

If a few days sharing a bed in a hotel counts for five regular friendship years, we're going on over 20 years of friendship. It feels like it.

My first non-running-full-speed weekend since 9/20-21 is in its last few hours. More's the pity. But I am caught up at work, have a massage scheduled for Tuesday and think I've replaced the sleep deficit (which I know is not possible but, in any event, I hope to commence being able to stay up past 8:30 p.m. tomorrow night).

Social Butterfly got into University of New South Wales for spring semester--so early March! So exciting! Also reassuring that I have some great connections for oversight on her medical condition--makes it much easier to be joyful. 

Maybe we should all agree to write one post a month . . . NaBloPo something . . . I am guilty of neglecting this blog and yet it's too hard to say goodbye to all my true friends--and to the writing and storytelling and the pictures and the authentic and often vulnerable voices. 

Thoughts?

 

Dr. Greene's Tweet Chat Links

These are all links to studies, support groups, activities etc. I referenced on my #LTKH Twitter interview on 7/28/14

Five-series guest post on Dr. Greene dot com

10 Things Parents Wish Educators Knew About Eating Disorders

10 Things I Wish Physicians Would Know About Eating Disorders

10 Things I Would Like Every Therapist to Know About Eating Disorders

Mothers Against Eating Disorders Facebook Support Page (mothers only)

Mothers Against Eating Disorders Advocacy & Activism

International Eating Disorder Action 

Families Empowered and Supporting Treatment of Eating Disorders

Eating Disorders Coalition

Alliance for Eating Disorders

National Eating Disorder Association

Mothers and Others March - 9/30/14

Eating Disorder Coalition Lobby Day  10/1/14

Federal Response to Eliminate Eating Disorders Act 

EDC Facts About Eating Disorders

In Pitching Veggies to Kids, Less is More

Eating Disorders Strike Younger and Younger 

Trading health for a healthy weight: the uncharted side of healthy weight initiatives

Life-threatening consequences when school boards fancy themselves healthcare providers

Could you spot someone with an eating disorder?

anorexia nervosa among female secondary-school students in Ghana

Eating disorders in males

A Genetic Link to Anorexia

Academy of Eating Disorders Guide to Recognition/Managment

 UCSD Eating Disorders Center for Treatment and Research

University of Chicago Eating Disorders Program

University of North Carolina Center for Excellence for Eating Disorders

Dr. Cindy Bulik and Anorexia Nervosa Genetic Initiative (ANGI)

Dr. Walter H. Kaye

Dr. Laura Hill: Eating Disorders from the Inside Out TED Talk

Dr. James Lock

Dr. Daniel LaGrange 

Dr. Ivan Eisler

Maudsley Method

Family Based Treatment for Eating Disorders

 

 

Oh, The Places You'll Go!

Wonderful, time-consuming things are happening at Casa Juggling. My first post for UCSD is up! I am a hashtagging (#MAEDvocates), tweeting fiend over on the Twitter. Never anticipated having a long and fruitful exchange with these gals, but it happened--and 20K people or so had it on their timelines. If I have to change the perception of eating disorders one conversation at a time, I am willing to give it a shot.

The Barbi Twins

#TruthinAds is what started the conversation and though I don't think airbrushed images "cause" eating disorders, I think they warp ALL of us and make most people dissatisfied with their bodies and THAT is bullshit in my book. I really hope this legislation passes at some point. 

As I tweeted, it's one thing to sell us a fantasy, it's another to convince us it's reality. 

Back to the keyboard! Guest post on social media for F.E.A.S.T on deck!

I believe I will go for sheer nonsense or non-ED rant on my next post--y'all deserve a little of that for sticking with me! 

Happy Weekend, All!

 

In Which I Shamelessly Use My Impending 50th Birthday to Beg for Something

As you may know, I am in countdown mode to my 50th birthday. T-8 days to be precise. I was pretty angsty about the whole thing for about nine months and then I just sort of realized that it was happening regardless (God willing and the creek don't rise) and the internal whinging was not going to make a damn bit of difference so I ought to just move on. And I did. 

But . . .

50 IS a big birthday and it would be a shame to let it pass without some sort of bloggy celebration; after all I've been doing this since I was but a young woman of 42. (Good. Grief.) 

(Insert smooth transition that is just not happening for me writing-wise right now.)

A pretty amazing thing happened today; this piece was published on Yahoo. If you remember, the beginning of all of this was just last week, so it's been quite a whirlwind. The thing I'm most pleased about is all the new recruits to my long-dreamed of Twitter Army of Eating Disorder Awareness Advocates and Activists. People are beginning to believe!

What does this have to do with my birthday?

This journalist, Beth Greenfield, did a fantastic job with the piece; she asked insightful questions and her story reflects what we talked about--that's not always a given. I would love for her editor to see that a story like this--one that raises awareness and highlights advocacy--can generate traffic. 

To that end . . .

For my birthday, I would like all of you--regular commenters, intermittent readers and lurkers alike--to leave a comment on the Yahoo piece. If you would like to put icing on that birthday cake of mine, you could also retweet me--@jugglingjenn--as I am looking to take this story even further; national coverage would be a dream come true.

To get the message out that eating disorders are deadly diseases with a strong neurobiological component and deserve the evidence-based treatment and insurance coverage that is a given for other medical conditions is what I REALLY want for my birthday. 

Will you help a sister out? 

P.S. YES, you do have to have a Yahoo account to comment. It takes less than 30 seconds to sign up. I love you!

 

 

 

Houston, We Have a Problem, Part 3

As a nurse surreptitiously videoed Jenny's room we tiptoed to her doorway, until she caught sight of us . . . Jenny was in utter shock! Enough to hide under the covers, probably thinking we were ghosts!   It would have taken wild horses to hold us back, especially Alyson and Denise, from bee-lining it to Jenny, embracing her, stroking her hair, her face, her hands.  To meet her in person, experiencing the elements of touch, sight, sound and reality, was overwhelming for all of us . . .many tears were shed, and no words will ever be able to convey the magic in the room that night!

Faith, Alyson, Jenny, Denise (aka Jenn)

And to make this visit complete, much to Jenny's dismay, a meal was in order! We went to the cafeteria together. How could we not?   After months of Skyped meal support, It was time for the real deal--macaroni and cheese, french fries and a smoothie. We ate, we laughed, we loved on Jenny!

All too soon, our visit came to an end.  Our goodbyes were quick.  But the afterglow and the impact of that visit lingers till now, and for what will be a lifetime.  A day that forever bonded three PITA Moms and their PITA daughter, that, in a sense, completed a journey from cyberspace to reality.  Nothing can ever take the place of reality . . .a real touch, hug, an eye-to-eye gaze. We hold those moments close to our hearts as we move back into our lives and realities.

Jenny and PITA Mom Denise having a moment/Photo by Faith.

We rejoice that our goal of treatment for Jenny was accomplished, knowing that it took the full efforts of 13 dedicated, fearless and tireless women and all they brought with them, including supportive spouses and families. However, we all agree that this is just the beginning of something way bigger than our original singular goal . . . there really is a method to the PITA madness.  And madness it was at times, but the madness worked and it can work for others suffering from an eating disorder who are unable to access treatment in a conventional manner.  So with Jenny tucked in safely in treatment and PITA moms recovering from caring for her, we are working towards our long-term goals and mission(s).  

One thing we know for certain . . . life will never be the same for any of us again!   We are forever the original PITA Moms!

Like you, we are imperfect, and, like you, we are enough.

 

National Eating Disorder Awareness Week (aka Bang my head on my Desk Week)

This is the first time I have been a participant in a meaningful way during National Eating Disorder Awareness Week. How have I been disappointed and gobsmacked? Let me count the ways . . .

1. All the body-image stuff going from organizations that purport to be doing eating disorder awareness. Why, you ask? Let me illustrate:

All of you with body image issues stand up (I am fairly confident the percentage of you standing is in the high nineties). Now sit down if you don't ALSO have an eating disorder. Well, that was certainly loud with most of you sitting at the same time.

I love to talk about the way media and our thin-focused culture do girls and women dirty (and even guys now). Just NOT during  NEDAW--I want to talk about eating disorders during NEDAW. Sigh.

2. All the talk about how to prevent eating disorders by focusing on postive body image and having parents not be body-shaming, perfectionistic, driven and controlling stereotypes. Why does this bother me?

Because parents couldn't cause eating disorders if they tried and (as I learned the hard way) doing every. single. thing. on these prevention lists won't help in the end if you've got a kid wired for an ED. 

3. The images of the skeletal, blond seeing her elephantine reflection in a mirror that accompany most articles.

Guess who gets eating disorders? Everyone--really, being an pretty, thin, affluent, white girl is actually not a prerequisite for developing an eating disorder (just a coincidence that's my girl's profile). Also (news flash), anorexia is NOT the only eating disorder there is--and you don't have to be skeletal to be sick. These graphics may actually prevent people from believing they have a problem and that is definitely an eating disorder awareness fail. 

4. I don't have ANY problem with all the articles that are focused on research and treatment and funding for research and the issues of access to quality treatment and the problems surrounding the way insurance companies cover treatment and the fact that many medical professionals are still using 1970s knowledge to treat EDs in 2014. 

Wait . . . I do have a problem--I'm not seeing those articles :(

The bottom line is this: it really doesn't matter WHY someone developed an ED (accept in the context of research); it matters that they recover from their ED. 

You know those St. Jude's commercials that get us to open our hearts and wallets so effectively? They don't spend any time pontificating about whether or not the mother ate tuna high in mercury three times a week and "gave" her child cancer or whether dad smoked in the house when the child was a baby and "gave" his kid cancer or whether the kid "gave" herself cancer by playing next to electrical wires. They just ask you to support funding for research and treatment. 

You can bet that next year I will have a plan in place for how to deal with NEDAW--and it's going to include being prepared to comment and tweet A LOT about articles and postings that don't further the cause, but rather hinder it by conflating symptoms with causes and blaming patients and familes. 

If you are on Twitter and feel like seeing firsthand what I am talking about, explore these hashtags: #NEDAW #NEDAwareness #NEDA. If you want to see what I and others in the know are seeing, we are using hashtags #EDAfail and #EDAstar to highlight the good, the bad and the ugly (much more of the last two, but maybe next year will be different.