What I said at the church water ceremony 9/9/12

We have a water ceremony every year.  We bring water from where we were over the summer, and share  where our journey.  We mix the water together.  I wrote down what I wanted to say to make sure I wouldn’t bore folks.  Here’s what I said:

I learned that we here in UU don’t have this place called Hell.

But if anything was Hell on Earth, it was the four years of relapse I had with my eating disorder.

On August 29th, Puzzle had her Psychiatric Service Dog papers signed,

And she’s legal.

That was when Hell ended.  It was done with.

When I gave Puzzle her name, five-and-a-half years ago, I didn’t realize

That she was the missing Puzzle Piece.

 

If there’s any way I can describe it, going from “pet” to Psychiatric Service Animal,

Maybe it’s like you take on vows,

Such as the vows that a doctor or minister takes on,

My place with Puzzle in the world has forever changed,

Together, we walk on six legs.  Or that’s how I like to think about it.

 

I got better in spite of this thing called treatment.

I hope I never grow out of wanting to change the world.

I am getting stronger, and prouder, and more confident every day.

 

This water comes from Heathrow Airport.

I came back to the US on Sunday and on Wednesday I got locked up against my will.

I spent sixteen days imprisoned and then left against medical advice on Friday, August 3rd.

Opening the bottle, it’s like the water isn’t even me anymore.  I’m so different.  I’m so thankful.  Amen.

 

Tired and resting

I have a headache, just need to rest up today and don’t have much planned yet.

I have an aisle seat on the plane tomorrow.   On the plane over, I had an aisle seat as well.  There was one other guy in the row and a seat between us.  He insisted that we switch, saying he was going to be getting up and down a lot.  I wasn’t quite sure what that was about, cuz all he did was sleep all night, but I obliged.

Tomorrow’s flight will be during the day.  I’ll bet the weather will be brilliant.

Not sure what to say

I am exhausted…had a wicked good day, but I have crashed real bad.  I want to bury myself, just hide from everyone and everything.

Not particularly looking forward to tomorrow, or the next day, or the next….

I don’t really want to go back to the US and face my miserable life again. Of course, the misery followed me here…my eating disorder follows me everywhere….

My DMH person phoned me just as I was waiting for the bus to get to the airport on Monday.  She asked if it was okay if the boss guy came with her next time, that is, on Wednesday.  She does not have authority to “section,” however, he does….

Getting locked up…again…this is not helpful. But that must be their motive, right?  It’s not like I’m going to be crowned queen or anything.  Or told I’ve won The Price is Right.  Oh, whoop-dee-doo, just what I’ve always wanted…a new luxury car…I can’t drive….

If those doctors wanted to put me in the state hospital, then would DMH DO ANYTHING to stop it?  Not likely, since they don’t know what to do with me anyway….

I’m such a wicked bitch and that’s the truth.

Writing as Catharsis, Publishing as Empowerment: my second full day in London, UK, with Chipmunkapublishing

I sitting in the lobby of the London hotel where I am staying, in the middle of madly reading Jason Pegler’s book,Mental Health Publishing and Empowerment.  If I start to cry, I will not hold back my tears.  If someone sees me sitting here all emotional and powered up, then let them go ahead and ask.

I have a story to tell.

I am beginning to write the story tonight.  It must be so.  I am telling the story about a woman past 50 years old, who, against all odds, hopped onto a plane for London knowing one thing: she wanted to change the world.  She was not even well enough to travel.  She had to jump through hoops of fire to get to this place, avoiding doctors who surely would have had her locked up and therefore making it impossible to make this trip.

You might often hear her recite her motto, “You do what you have to do to survive.”  She had done just that.  Sometimes, you have to lie, just like the Jews, those from whom she had descended, had covered up their Jewish identity to avoid the gas chambers.

Was the lie so wrong?  Yes, there had been close calls.  The threat of being forced into “treatment” was on her tail every step of the way.  The authorities wanted her locked up in the name of keeping her alive.  They would take away her freedom, her choice to live or die,and replace it with a life of slavery to the system she now rejected.

She walked onto the plane a free person, and the next morning, stepped onto a different continent where people did not know her, where her identity was secret…

Yes, This Hunger Is Secret.  The title of her book.  The key.

The thirty-two-year anniversary of her eating disorder had just passed and she was entering her thirty-third year of self-deprivation. She was the riches-to-rags girl who had hungered with a credit card in her pocket.  She hungered to change the world.  She hungered for God and for the pinnacle of the Universe.  And now, it was on the verge of happening.

She was shown her room upon her arrival at the hotel.  Yes, this is more than suitable.   This is the place, she told herself.

With painstaking precision, she unpacked her things and put them into their places.  It was Tuesday.  Then, Wednesday, Thursday, Friday with her publisher, a man who himself had changed the world and was continuing to do so.

Learn.  Observe.  Listen.  Be transformed.  Either something would happen or it wouldn’t.  Live or die.  You can’t straddle both worlds for very long.

The Chipmunkapublishing offices are located in Canary Wharf, perhaps 45 minutes’ ride on the Tube from her hotel. Why, after two days, did it seem as though she’d been in this city for her entire life? The Summer 2012 Olympics will be held right here in this city.  It was like a beehive, a swarm of what is to come.

Living with an eating disorder has been the only life she has known, especially for the past four years.  Ignorance about eating disorders was so abundant that she had been branded a liar, an addict, a filthy abomination not fit for the common crowd.  She tried on the role of bitch and wore that clothing for months.

They said she used her anorexia to manipulate others.  Above all, they said, she was attention-seeking, flaunting her thinness, wearing her illness like a badge.  It was a badge that made others uncomfortable because they saw a tiny bit of themselves in her.  They could not tolerate that ache in their hearts that she represented.  They despised that symbol, crushed it, rejected and denied it.

Hey, folks, I am coming back.  If you choose to despise me, let my mere presence haunt you.

People say that in February 1983, Karen Carpenter’s death changed the world.  What people forget is that she changed the world while she was alive, through her music, through her celebration and love.  Anyone can do this and you don’t have to pass a BMI test to qualify.

I can and will change the world, and I don’t have to die to do it.  I don’t have to be infamous and cause a stir and a huge nuisance to get noticed.  Karen Carpenter did not die for anyone’s sins.  She died because her body gave out.  It is not the 20th Century anymore and I never was a famous singer and never got noticed.

But I am a writer.  Most trained writers desire to be noticed.  Writing is catharsis and publishing is empowerment. It is not the kind of power that means control over others but a feeling of self-worth and inner strength.  Yes, we can.Attention-seeking is not the horrible sin folks think it is.  It means making a statement and being heard.  It is a myth that people with anorexia starve for attention.  All we want is the same thing everyone else wants: to be loved and wanted and cared for.  We do what we do because it is the only way we know.  We do this to survive.  To turn our backs on life so that we can live.  Most of us gave up on having our voices heard long ago.

Sure, you hear me screaming here in my blog. You have sat and watched me for years.  Maybe you have come here and read my rants and shaken your head and said, “She will never learn.”  Or perhaps you have come here periodically to see if I was finally getting “help,” and then, seeing that I had taken the path toward death yet one more time, you had Xed out my blog, shut down your computer, and gone and watched the soaps and tried to forget about me.  But maybe once or twice you freaked and got a little paranoid over my words.  You called the cops on me.  Hate to inform you, but the cops have a lot of respect for me now.  They do not have the time for paranoid people who call them all upset over something they read on the Internet.

Like I said, I am coming  back.  It is my presence, not my absence, that will blow your mind.

Sometime late today at the seminar at Chipmunkapublishing I had the gem of the idea I needed.  We had been discussing marketing all day.  Not just marketing of our books, but spreading the word: freedom, justice, empowerment, love.  I do seek attention.  I have always loved reading aloud to others.  I was always a ham.  And this is not a bad thing.  Being a ham is how you get the message across.  Be daring.  Take a risk. Cross the ocean.  I am the bravest person I know.

I am here against all odds in every sense of the term. It is an amazing story that needs to be told.  I vowed that I would begin to write that story tonight, and I am, right here, right now.

 

 

 

I feel too sick to ride the Tube today

But, hey, I gotta get to where I’m going.  I feel like I’m going to puke, actually.  Since when have I ever puked, ever?  I drank a bottle of Ipecac once, back in the early days of my ED.  I was 23 had just moved in with my parents, which was one of the many utterly stupid things I’ve done in my life.

I locked myself in my room and waited.  And waited.  Like six hours of nausea and no puking.  Finally, something happened.  I must have lost about three or four ounces of saliva or water or stomach goo, no more.  The rest stuck around.  I didn’t “get rid of” any of the food I ate.

To my ex-T: Now, now, now do you believe me?  No, I am not capable of puking.  My body won’t do it.  It’s a fucking curse.

Yeah, I hear what you’re saying, “You are lucky you never started.”  Or, “Puking causes medical complications, so you’re better off.”

So my response?  Try holding this food crap inside your overstuffed belly for like 12 hours, or more.  You WILL feel like shit, guaranteed.  Just put yourself into my shoes, for once.  Then you’ll know what it feels like to wish you were dead.

You can only suffer so much and then…and then ending your life seems like the logical thing to do.  When no matter how you look at it, suicide makes sense, well, then, it’s probably a matter of time, I guess, before it happens.

Go ahead and call me a coward.   Not everyone goes back to college at age 40, sitting in classrooms with 18-year-olds, for five years, and then finishes with flying colors.  Not everyone survives the loss of a partner.  Not everyone dares to go off to the most awesome MFA Creative Writing program on the planet, work their butt off, and then finish, despite what the “experts” said…that I couldn’t do it…that I belonged in a mental institution. Oh yeah, they’re still saying it.

It isn’t everyone that hops onto a plane and crosses the ocean in hopes of changing the world. So I’m here now, and I’m getting onto the Tube very shortly.

Oh, yes I do know that there are people who love me and care about me.  God bless you, I know you’ll understand….And to those that are my ex-friends, I hope you end up miserable.  I hope your lives end up fucked up, cuz you sure fucked up my life.  You are freaking two-faced liars.  I’ve gone to websites that talk about how the people you leave behind…say their lives are not the same….Revenge?  Oh, definitely.

Anyway, so much for my brilliant future.

I’ll be back later.

Thinking of myself as A VOICE FOR REFORM IN EATING DISORDERS TREATMENT

Hey, I like how that sounds, don’t you?  I decided today that I am not crazy.  I shared with others what ED treatment is REALLY like and I feel so empowered.

Force feeding has nothing to do with love and compassion.  It has nothing to do with care.  Forced treatment and love, compassion, and caring cannot co-exist.  The only “program”-like situation I’ve ever been in that worked was not locked.  There were more staff than patients there.  I was staying there entirely for free.  There was no barrier separating myself from staff.  I could walk into their office anytime I pleased, just to hang out.

This is the place I talk about, rather vaguely, in the Epilogue of my memoir, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness which is going to the printer by the end of the week!

Anyway,

A VOICE FOR REFORM IN EATING DISORDERS TREATMENT:

I am against forced care (I need to define “forced care,” too).

I believe in INFORMED CONSENT.  Stop the lies.

I believe in equal access to treatment (this required a bit of explanation, cuz here I am in another country where things are done differently)

I believe in ending discrimination in the entire medical field.

I believe that people who have experienced abuse in the system (if you have an ED, you have experienced it) need to come out and talk about it.

The corporately-sponsored lies in eating disorders need to come to an immediate halt. (Those that push drugs and lie about them, or push a certain meal plan and say it’s the only way…their lies are based on big money that backs their “research”…designed to put money back into the drug companies and big agricultural companies that convince us we need meat, dairy, GMO foods, Ensure (fake nutrition) etc.

More in next post.

More from my writings today…

Thinking today in terms of being a “mental health ambassador.”  This is the term that my publisher, Jason Pegler, uses.

My awesome dictionary that I have installed in this computer defines ambassador as:

1.    a diplomatic official of the highest rank, sent by one sovereign or state to another as its resident representative
2.    a diplomatic official of the highest rank sent by a government to represent it on a temporary mission, as for negotiating a treaty.
3.    a diplomatic official serving as permanent head of a country’s mission to the United Nations or some other international organization.
4.    an authorized messenger or representative.

Get it?  I strive to give people with eating disorders a voice.  I encourage everyone to write their story.  Actually, that’s all I did with the other patients last time I was locked up.

I felt really good at the seminar today.  As the only one from another continent, I felt like I was bringing news from the US.  Not that things are much better here in the UK but at least they have socialized medicine, so conditions all around are much better for folks with mental illnesses.  Still, everyone there talked about being treated like shit cuz of their illness…by society as a whole.  Like not being able to find a decent job…and of course, losing friends.  A few people talked about suicide and the work they’re doing in suicide prevention.

What makes a person want to end their life? Depression can do it to a person, true.

But perhaps more often, a person will turn against themselves because of the way society has treated them. So whereas  the illness itself can make you suicidal, so can discrimination due to your mental illness.

Suicide…societal hatred turned inward.  Just a thought.

Discrimination due to your illness…this shows up in “care,” too.  I pointed this out at lunch hour, that in this country, if you take a psych med, you get discriminated against, even by doctors. Even by our own shrinks.  Cuz face it, lots of them think very little of their patients.

Ever read a doctor’s note?  I have heard about people who read their doctors’ notes, just peek over their shoulders or sneak a peek while the doctor leaves the room.  These people have often stated that their doctor writes something like, “slightly overweight” or, “anxious-looking” when these have very little to do with the medical issue at hand.

Anyway, I’m continuing this on the next post.

Anorexia: it's deeper than you think

Excerpt from my writing today:

…I should try to think about how I can change the world with my writing.  Right now, people don’t even know what eating disorders are.  These illnesses are not caused by the fashion industry.  It goes so much deeper than that.  To explain why I strive to be ridiculously thin isn’t easy, because although many people want to lose weight, the way I see things, the difference between being a person on a diet and having an eating disorder that takes over your life….It has been so difficult.  People want to shake me.  They say, “Why do you do this to yourself, why do you want thinness more than you want to stay alive?”  I want to tell them, “Yes!  That desire, over life itself, is anorexia in a nutshell.”

Greetings from London

I’m at the hotel right now and it’s late.  It feels good, and not good to be back in London.  Good because I feel oddly at home here, and not so good for reasons I can’t explain.

The best part so far has been riding the tube.  I guess if you’ve been car-free as long as I have, you can deal with any public transportation okay.  No matter where you are, you can get to where you’re going.  I guess I wouldn’t be where I am today if this were not the case, and so it is with everyone.

All I can hear right now is the rain outside and the tap-tapping of the keyboard.  And the rumbling in my throat that I do all the time, my vocal tic that seems to be getting very vocal these days.

On the plane, I switched on Vertical Horizon’s album, Burning the Days.  It seems to be good airplane music, but this morning, VH wasn’t cutting it for me.  I thought of switching to Dave Matthews, but no, that’s dog-walking music.  I went through the listing of albums and Born to Run popped up?  Huh?  I didn’t even know I had that album.  I switched it on and Springsteen began wailing out the first track, “Thunder Road.”

It was all over.  I cry on buses all the time and I’ve cried on planes before, but since I’m not on a plane every day I can’t say it’s an everyday occurrence.  I now know why I ended up at a window seat last night.  The trick is to pretend you’re really fascinated with the cloud cover.  If you turn your head far enough, the people sitting in your row have no clue you’re crying.

I was really bawling, though, enough to take off my glasses, sniffle, and wipe my eyes with my sleeves.

It was my Joe who introduced me to Bruce Springsteen. We used to play this game over the phone, back in the days when the phone was used for conversation, called “Name that Group.”  Let me tell you, Joe knew right away that I was rock-music-challenged, so much so that half the time I guessed “Elvis” not really knowing who else it could be, having never heard of any of the current groups. He saw to it that I got good at this guessing game.

We loved Born to Run, but when Tunnel of Love came out, we had a hard time coming to consensus.  Either you loved that album or you hated it or you weren’t a Springsteen fan.  There’s one thing Joe and I agreed upon, though.  We liked the word “Love.”

We liked the word “love” so much that we rarely told each other that we loved each other.  It wasn’t nthecessary to state and re-state the obvious.  And right then, sitting on the plane, I guess a lot of stuff seemed obvious to me.  Like the passage of time, for one thing.  It’s been nine years since I saw him last, unless you count the times he appeared to me in dreams.

When we first started dating, one outing he took me on was a trip to see the Red Sox at Fenway Park.  Around the beginning of the eighth, Joe said to me, “C’mon, Jules, let’s go.  Our guys are a disgrace today.”

“Huh?  Don’t you want to see the end of the game?”

“Naw, I’m too disgusted. They’re not cutting it today. Lazy fucks.”

Over the years, of course, the Red Sox continued to let us down and let us down.  It was kind of a Boston thing, this getting used to being let down.  You had to have kind of a tough loser skin if you were to spend any time at Fenway Park.

That is, until 2004. But Joe had been dead over a year then.

Here in London, folks aren’t baseball fans as a rule.  It’s a weird unscientific American game based on superstition and luck.  People here didn’t’ grow up on it the way I did in Boston.  They don’t have baseball summers in their backyards.  “Strike” doesn’t mean the same thing here.  But the Olympics are coming to town later this month, which seems to be the big buzz right now.  It’s a city full of anticipation.

This is summer in London.  This is daily rain and daily Changing of the Guard.  Somewhere in the middle of the city, in a little cheap hotel, an American writer sits and muses about this weird place she’s found herself at.  She writes, thinks, and remembers.  She asks herself what the future holds,if it holds anything at all or if it holds nothing and lets life slip through its fingers.

Maybe when I cry on buses, and last night on the plane, it’s cuz life is doing just that, slipping through.  I try to hold it but it is slippery and elusive.  It’s the same for all of us, just a game of superstition and luck.  If we’re lucky, we see a handful of winners in our lives.  I guess that’s asking enough.