January 28, 2014

We need to stop calling it "non-compliance"

June Alexander has a heart-rending post up today on her blog about the ridiculous idea of "compliance" with eating disorder treatment. Real people suffer horribly because of this concept.

It has always seemed absurd and cruel to me that we mistake the symptoms of mental illness -- anosognosia and anxiety and depression -- for willful lack of cooperation.

We actually treat them as if they should be GRATEFUL and that "lack of compliance" is some sort of selfish or lazy impulse. It's horrifying to me that we design our legal, practical, and community resources in such a way as to ensure that the eating disorder NOT THE PATIENT is in charge. This, we already know, Does Not Work. The miserable record of eating disorder treatment history tells the tale. It isn't anyone's fault this has happened but it IS our responsibility to fix it.

It is time to recognize that we do not have a system, except one designed by "ED" to keep patients unwell, keep loving families and caring professionals at bay, and keep from facing our compassionate responsibilities to other human beings.

"non-compliance" indeed.

January 21, 2014

IAEDP Conference features family involvement

For clinicians considering attending  IAEDP's upcoming conference, look out for the session: Family Involvement in Eating Disorders. The session, by Craig L. Johnson, PHD, FAED, CEDS, Chief Clinical Officer at Eating Recovery Center, will involve more that FBT/Maudsley and discuss the history of parent and family involvement with treatment. 

January 17, 2014

All caps: What is "knowing" someone?

I am in mourning this week. My dear friend, Charlotte, died Monday.

I have wept, and sobbed, and simply leaked for long periods of time - so that I have lost awareness when my face is wet any more. My eye sockets ache. My face hurts. My throat is raw. I feel bruised in every joint. There is an illusion of indentation on my chest - I keep checking - and a few times a day I quite literally have to remember to breathe. My movements are slowed and often clumsy. When I tried to put on my tap shoes and dance, just to see if I was alive myself, I was knocked to the floor and onto my back. All this is only my body's response to losing Charlotte.

My emotions are slowed as well, but they've also lurched and heaved and even soared, and - especially by the end of the day - slackened into numb exhaustion. I function mechanically, ticking boxes of responsibilities she left me. Strangely, I sleep well, something I've rarely done in the past month as I have lived in a state of dread anticipation: hoping for a word, agonized by her anguish, bled pale from stubborn hope, preyed on by existential walls closing in on her behalf.

"How long have you known her?" is a fair question. What do you mean by "known?"

I have met Charlotte only twice.

I am not alone. Several of Charlotte's friends, true friends, have not even been in the same room. We  have said the same things to one another this week: we wonder how to explain to those outside Charlotte's circle exactly what we mean by "knowing" Charlotte. We feel awkward in our grieving, as if it is unearned to care so deeply and feel such a loss. We all keep apologizing: "we never really met" and "I only met her a few times."

What does knowing someone mean? For years Charlotte and I have been in almost daily real-time contact, we share friends and jokes and experiences, and I felt heard by her in all my moods and times of day. We have been angry together, sullenly unkind together, and giddy with pure fun. I woke up and had coffee with her in my robe (well, tea and wrapper for her). She would respond within seconds to a request to talk, was often impatient for me to wake up. She ordered me around, knew  exactly what tone to use when I messed up, and could handle a genuine argument without cutting me off. She knew my kids, my work, my fears, where I keep my orphaned socks. She let me sit up with her through the night at the bedside of her mother's last day. She has watched my son use power tools.  She was friends with my daughter, which was precious to me. She laughed, often and loudly, at the same foibles my family and onsite friends do. We were colleagues in an unpaid portfolio of activism. We wrote a book together, managed work projects together, took care of mutual friends, and even planned a memorial project together: for her.

We need to stop apologizing, my friends, for relationships that aren't always in the same room. It is time to stop looking at friendships on that artificial value curve. I'm closer, genuinely closer, to several people that I see far less (sometimes never) than people in my town and family. I get more done, even make genuine change, with people in other time zones than I do at "home." I trust and argue with and rely on people in other time zones as much as I do my own. We are no longer limited by geography.

Now, some of this is a Charlotte thing. She wasn't just an extraordinary friend she was unlike any other human being for her willingness and ability to be involved with people's lives, including mine. Where I would flinch at getting too involved Charlotte would bustle forward: calling at all hours, inviting people to her home, arranging meetings for people 10 time zones away and remembering every name. I'd smolder and she'd bark. I'd counsel caution and she'd snort with impatience and get stuff done. She loved me for what I really am, not some image I might want to project. I loved her for all her qualities, charming and otherwise.

I do not have, nor do I expect to have, a relationship like this with anyone else. It may have been facilitated by Skype and FaceTime and Facebook and email and other electronic means but it wasn't an electronic relationship. The internet may have allowed me to maintain my relationship with Charlotte but it has not limited it. I only got four years with her, but they were rich years.

Of the gifts I cherish: one of her always funny cards,
an antique veiled hat from her mother's collection, and a set of
drawers. When C was facing one of her rounds of chemo and worried
it would kill her, she and I and another friend mused over what one
does to prepare for death. On my list was emptying
my junk drawers. She sent me home with this set. They're empty.
Also to her credit, several of us count her as a best friend and yet we know it to be a shared honor. She had school friends, FEAST friends, neighbor friends, family friends, and friends over a single issue. She literally saved lives of strangers and strangers they no longer were, ever. These were genuine relationships, all. I've never known someone to have so many relationships and not necessarily interconnected. She had no ego about it, needing to show off who she knew or count their numbers. She never dropped names: she put people together. I delight in continuing to find her friends. She delighted in knowing we all would have and keep one another. She would be so glad, if a bit embarrassed, at the relationships renewed and strengthened this week as the word spread.

I have consciously devoted the past six months to working with and for Charlotte. As frightened as I was it has been the greatest gift she could give me. Writing with her and coping with her and creating the Charlotte's Helix in her name and preparing for this week have been a great honor but also an enormous learning and growing experience. I have horrible survivor's guilt - why should I live and not her, I ask you - but also my marching orders. Charlotte helped all of us, her friends, to accept this day and our instructions. Support the girls and HWISO and brothers and other friends. Keep fighting for what it is important. "Keep going."

"YOU CAN DO THIS WITHOUT ME" is the first and only time I remember her using all caps to me. She would not say "good-bye" but this she shouted.

When I stayed with her in July I padded down the hall to her room wearing one of her wrappers and I tucked her in. She laughed, as I was the guest and adults don't need tucking, but we knew one another that well. "Sweet dreams" I said.

Sweet dreams.

January 10, 2014

Talking a blue streak about Charlotte's Helix

What do you do with your anxiety? It turns out what I do lately is make impulsive hair color decisions. When my friend, Charlotte, got sick we scandalized our daughters when she dyed my hair blue. When she had surgery recently I did it again in some sort of strange magic to make sure she woke up safely. Now, I have a large blue streak over my left ear that will assure that no one will ever struggle to describe WHICH middle-aged band mom I am in a crowd!

If anyone asks, I can say that it represents that I can "talk a blue streak" about the research project in Charlotte's name: Charlotte's Helix. But really, it tickles me every time I catch my face in a mirror.

Now, at some point I am going to have to go to my hairdresser for a haircut. She will either be amused or NOT amused. I will have to stand my ground. Or not.

I tell you what, world. I will keep my blue streak if you will support Charlotte's Helix. That means you will see me in blue for the F.E.A.S.T. conference in Dallas January 31 & February 1 if the Helix gets 20 new pledges of support, one for each day until the event:


If there are enough pledges then I stay blue to go to London in March to speak at the Eating Disorder International Conference (where we will be taking samples for the Helix). Crazy American.

A little more than that and I'll sport my blue locks to the Academy for Eating Disorders conference in New York. Gulp.

I'm willing to talk, and wear, a blue streak for Charlotte's Helix, even with my best shoes on. Are you willing to help? Email or comment below with your pledge.

(Oh, and someone is going to have to get smelling salts for my hairdresser, poor thing)