rayni joan

January 28, 2014 – How I Learned to Stop Worrying About Surveillance and Create A Better World

At first, ruminating on the surveillance state, knowing the government snooped into everything on our computers had a chilling effect on me as a writer. I encrypted everything I wrote and when pouring out my heart in a personal journal, it was with paper and pen.

I reasoned: It's a privacy issue. Humans need privacy. I need privacy. Just about everyone I know told me privacy was dead because of social media and we should all accept that and behave as though a newspaper reporter watched us every time we left our home. (How boring that would be for the reporter!)

We are, in fact, followed every time we leave our homes - with license plate readers and cameras everywhere in the streets and with those always-on tracking thingies we voluntarily carry with us everywhere we go - our smartphones!

We don't have privacy inside our homes either. Call me old-fashioned but I still like to believe the 4th Amendment is supposed to protect us from unreasonable search - by the government or a corporation or anyone else. I don't open my husband's mail and he doesn't open mine. I don't like it when people read over my shoulder but at least I can intervene.

If one of my fictional characters commits some kind of taboo sexual act or blows something up, I don't want to have a SWAT team breaking down my door. It creeps me out knowing there may be uninvited eyes lurking.

Even if there are no eyes right now, just the possibility of future eyes - meaning my stuff gets swept up with all the other "metadata" and stored in Utah until "they" happen to decide one day in the future I'm some sort of threat and then it's in an easily accessible file.

Speaking of files, because I was active in the Movement back in the early 70's, Cointelpro days, I probably have more of a file than average citizens. I've not taken enough interest to file a FOI request. But you can probably understand how my history, as I remember it, makes me sensitive to surveillance issues especially now that we have evidence of widespread government and corporate snooping.

In the early 70's I worked for about a year as a reporter and editor for Liberation News Service - LNS - an antiwar and counterculture collective that supplied news and graphics to the burgeoning underground press, for the most part nationally, but also internationally.

"Underground" did not mean "illegal" but rather referred to independent, small publications which dealt with unpopular themes mainstream outlets avoided. While many kids were "turning on, tuning in and dropping out" as Timothy Leary advised, the dozen and a half or so kids at LNS assiduously applied our minds and bodies to creating a twice-weekly packet of articles, photos and artwork expressing our New Left politics in general and anger at the War in Vietnam and the draft in particular.

Eager to inform the community about what was going on beneath the mainstream headlines, we worked way more than 40 hours a week for $35 and two meals a day to get our packets out to 500 or so subscribing publications.

Our subjects included, for the most part, antiwar and civil rights activities, union issues, GI organizing via coffee houses, and international revolutionary movements. There was a bit of buzz about women's and gay liberation issues. We considered ourselves revolutionaries and were openly anti establishment.

We spent time in the field, at demonstrations, marches, and such.

When the Young Lords, a Puerto Rican Revolutionary group, took over a church in East Harlem- the People's Church - and converted it into a community center, I was part of the group barricaded in to bring attention to the need for a breakfast program and day care center in the Latino community known as El Barrio. I taught English as a Second Language there, pitched in with other tasks as needed, and like everybody else, slept on wall to wall mattresses on the second floor every night until we were all arrested.

I wrote an article about my experiences for Ramparts magazine but refused a by-line on the grounds that it was self-aggrandizing and counter-revolutionary.

So much for my writing career.

I firmly believed I was "walking my talk" and had no clue it would be used against me. Ha!

Many of the stars of the Movement firmament passed through our upper Manhattan doors - names like Abbie Hoffman, Jane Fonda, Benjamin Spock, Allen Ginsberg. We wrote a lot about the black power movement but our collective and our visitors were overwhelmingly white and middle class.

We believed the FBI and CIA subscribed to our news service in order to keep an eye on us and it wasn't until recently that I learned the FBI had set up fake underground publications to receive packets of news and to enable agents to attend alternative press gatherings.

People were paranoid, always believing the Feds were watching us, convinced one or another member had to be a mole. Which friend was fooling us? We'd look around our circle during long meetings and occasionally eye each other suspiciously.

Working long days didn't leave much time for fun outside the collective so most of the kids lived together and played together nearby. I lived a long subway ride away.

They appeared to know exactly who they were - unquestioning their values and beliefs. I was secretly bulimic and searching for an identity.

Complicating things even more, I had - back then untempered by consciousness - a natural tendency to teach and even preach. (This served me well when I became an interfaith minister and college professor, and proved even more valuable later on in corporate sales.) Nobody could accuse me of being in the middle of the road. Moderation? Huh? What was that?

Always having dated men, in 1970, for a variety of reasons, I was motivated to explore dating women. Holy macaroni, I fell in love, and not just with one woman, but with women, all things womanly, my women's group, sex with women, sex with myself, and sex with groups of women. I was on a high.

I threw myself into the women's movement, joined Radical Lesbians, moved into a women's commune in brownstone Brooklyn. I felt super-expansive and at the same time, I experienced a sense of having been betrayed by my parents, teachers, and the greater culture, all of whom had implicitly, if not explicitly, rejected anything except man-woman relationships.

Even though I had labeled myself by joining Radical Lesbians, my attraction to men had not stopped. Yet, I felt uncomfortable calling myself homosexual or bisexual. Too limited, I thought. There could be more permutations I didn't know about yet. Maybe polysexual would be better. (I give myself a gold star for this one.) So I decided the generic term "sexual" made more sense. (I still think that but I accept our culture is not ready.)

When I raised this point around my gay and Lesbian friends, they looked at me cross-eyed. Obviously this was anathema. Ditto at my supposedly radical workplace. "How come none of you think we should publish more gay articles?" I had help there because the head editor was gay, but he was used to keeping a low profile.

Me, I didn't know from low profile. I was so energized, I wanted to shout from the rooftops: Gay is good!

One day the collective scheduled an emergency meeting, mysteriously to take place in a "safe house" in suburban New Jersey, the home where one of our comrades had grown up. In the basement of that ranch house on a block with similar ranch houses, I got the shock of my life.

The only item on the agency was a trial and guess who was on trial and guess who was found guilty!

They accused me of being an agent provocateur! A cop! When they put me on the stand, all I could blurt out was how the joy of letting go and loving whoever I pleased motivated me to want to spread the joy. Why was I leaving meetings to "go to the bathroom" so frequently? I must've been sending some kind of signals to headquarters, right?

Even though I had written an article about my constant binge and purge activity, nobody connected the dots, and I was too ashamed to admit I was still totally hooked.

Was I going to admit under oath that I went to the bathroom to puke those tuna sandwiches we shared? Not on your life.

Back then, the term "bulimia" and dysfunctional eating itself were unknown in the culture. As an addict I felt powerless, isolated and guilty. So their finding me guilty made some kind of perverse sense to me.

They concluded my rants about sexuality were a planned threat to the coherence of the collective and they would no longer tolerate them. I was out. The purger was purged.

The energy that night was so hostile I felt demolished. Over the years, I've wondered whether there had been a mole and whether that was the person who instigated the trial.

I remember going to the bathroom (just to pee) in that suburban ranch house and talking to a tabby cat who slipped in to keep me company and rubbed up against my legs. "You're the only one who gets me," I said. "How can the revolution succeed with this kind of meanness?"

Fast forward to 2001: Having experienced the madness that surveillance engendered, even though the government had supposedly stopped spying, I knew as soon as 911 led to the already-prepared Patriot Act that the gloves had come off again, and the paranoids were back in charge.

So it's not as though Edward Snowden's 2013 revelations surprised me and my friends. We knew the government was monitoring. It was the scope of the surveillance that floored us, the "collecting it all."

Back to the present: Having started this piece furious about the scope of surveillance and determined to encrypt and keep secret all my writing, after a few months I have changed my philosophy. I have decided to finish this piece of rumination I started half a year ago and post it publically on my website. Here's why:

I am in the process of changing direction to concentrate on characters who already have moved into a world with values I espouse. Flowers. Music. Beauty. Joy. Connection. Justice. Fairness. A utopian communal Earth in which we all respect each other and there's more than enough clean water and clean air and clean energy and happiness for everyone. Children play delightedly and learn freely.

It's a place where Fear is unknown and Love rules.

In our new world's history, millions of little people long ago tipped the scales against the big bad guys. There are still some stories about those old days before free energy and radical gifting replaced antiquated fossil fuels and money money money.

These stories seem unbelievable. How in the world did billions of people allow a few hundred to rule them? What a strange and crazy world that must have been!

Read my writing and weep, NSA. And eff you if you can't take a joke.

March 27, 2012 – MY BIG O

Just getting my voice back after more than two weeks of laryngitis. It's strange not having a voice, particularly when I feel I have so much to say.

When my husband gets frustrated with me, he tells me I "sure have a lot of opinions," and I answer, "G.D. right I have a lot of opinions and proud of it!" I've heard there are still women who've never had a Big O. I'm not one of them. Hahaha.

Does holding strong opinions have to be the same as being opinionated? I think not, because being opinionated implies rigidity. I like to think I am open to hear other ways of thinking about things. Although…

Here's an example of an opinion I have: I hate comedy which relies on sexism, racism, or any other ignorance to be funny. Even if it's supposed to be ironic, I find it not funny. Sexism and racism cause too much suffering to be laughed at - in my opinion.

Jon Stuart's making fun of people wearing hoodies to protest Trayvon Martin's murder turned my stomach. Jon was so light-hearted in his presentation. He lumped together Dick Cheney's heart jokes with all the hoodie jokes. Ugly stuff.

So, I've just come across a comedian whose work not only does not rely on racist jokes, but he actually has taken on racism as a serious topic and manages to be very funny as well as conscious. Kudos to W. Kamau Bell. Check him out on YouTube and/or on his website, wkamaubell.com. I am definitely a fan.

In my Opinion, Kamau rocks!

September 23, 2010 – BUGLIMIA

NO, I do not have bulimia anymore. No more forced throwing up. But, I must admit, the whole idea of bedbugs in a hotel room makes me feel as tho I might vomit. I’m calling it BUGLIMIA! Do you have it? Well, I did some research and found out how to search your hotel room for BB upon arrival. It'll help if you pack a flashlight.

Rayni's Anti-BB Tips:

1.      Put your luggage in the bathtub so it's safe.

2.      Pull off all the sheets and blankets and thoroughly check the sheets, blankets, pillow cases AND the bed and boxspring for the bugs themselves or signs of their existence (brown/red splotches of their exrement).

3.      Pull off the headboard (in a hotel they often lift up and off a wooden cleat nailed to the wall). Check the headboard and cleat for the bugs, their molts (exoskeletons), or excrement.

4.      Pull the bed away from the wall and check the baseboard for the same kind of signs.

5.      Pull out the nightstand(s) and check the back(s), inside the drawers, and around the bottom of the baseboard molding.

6.      Check the wall, the lamps, and the carpet for telltale splotches.

7.       Don’t freak out if you see gobs of dust but, if you see no signs of bugs, most likely you are safe. They aren’t there.

8.      Breathe a sign of relief.

January 2, 2010 – Orgasmic Birth

My youngest son and his girlfriend visited yesterday for New Year’s Day dinner and my son casually mentioned the documentary film “Orgasmic Birth.” I did a double take. He’s 25 years old and has known for a long time that his delivery was orgasmic for me (maybe for him too?). It used to freak him out. He’d always been embarrassed to think his birth was a peak experience and literally orgasmic. We didn’t talk about it yesterday, but I could tell he was reassured and even pleased to have found the documentary and suddenly know his birth was special – and positive – and something to be proud of. Wow.

My first two birth experiences were good – in a hospital birthing center, totally drug-free, and coached by midwives. Thrilling and miraculous with wonderful rewards. I had planned to birth with the same midwives for the third child. But, because of my slightly elevated glucose level and “advanced age” – (at 43, I was labeled “geriatric!”) I went to an OB-GYN physician whose practice was completely traditional.

So, how did it happen that, with two kids, 5 and 7-1/2, in June of 1984, I flowed into the most outstanding orgasmic experience of my life – far more intense and PLEASURABLE than I’d ever imagined possible? Perhaps because he was my third and I was more relaxed? Perhaps because I was more spiritual? Perhaps because the Sun was in Cancer and the Moon in Taurus? Who knows?

It started badly because the Admitting office had lost my file and demanded that my then-husband re-register. Up in the maternity ward, a brand new nurse – or maybe a janitor, used me as guinea pig and had so much trouble setting up an IV that he was bruising my wrist – it felt like it was on fire. I calmly but ferociously told him he’d better stop immediately or I’d put a contract out on him. He ran away.

An experienced head nurse showed up and everything began going smoothly. I relaxed. The father returned but wasn’t really into it and I didn’t care. I felt strong. For the rest of the time, mostly I hung out walking the halls alone, stopping to breathe with each contraction. Following my intuition, I reframed each contraction not as labor or pain, but as Mother Earth’s drumming inside my womb. Drumming, drumming to welcome this child.

The drumming intensified and I breathed along, getting completely into this rhythm, as though creating Nature’s symphony with major percussion unlike any I’d ever known. With each beat, I felt more aroused. So amazing. So intense. So perfect. So beautiful. Two hours. Three hours. No time. All time. Total merging with nature and wholeness, higher and higher, pleasure with each beat, pounding, pounding harder, harder, until, in an emotionally, physically, and spiritually transcendent moment of ecstatic release, I delivered the baby. Whew.

The danger of flying so high is that it tends to lead to a deep low, and that happened, unfortunately. Had I been more solid at the time, with more support, I probably would’ve avoided the depression. I’ll never know.

People I’ve spoken to about this experience over the years were incredulous. They’d never heard of anything like it.

But now, with this documentary, they’re going to find out. I’ve ordered it on Netflix. Can’t wait.

October 13, 2009 – Big Fat Lies

I’ve just heard from a local woman who read my book and was astonished to learn that bulimia has an emotional component and isn’t just about weight. Around Hollywood, the ED scuttlebutt is just about always weight-related. She thanked me for helping her “get” what bulimia is all about, i.e., when everything feels as though it’s falling apart and there’s nowhere to turn and you’re about to lose control and freak out, and you’re ashamed of yourself and can’t confide in anyone, instead of feeling these scary feelings you take control of the one thing you can – your body. By refusing to nourish it. You are too ashamed to admit weakness and don’t realize that lack of nourishment creates even more shame.

You trap yourself.

In the beginning, it feels exhilarating to throw up. You feel as though you’ve outsmarted the whole world – parents, teachers, bosses, friends, and maybe even God, too - especially if you really chow down and up majorly and you’re out of touch and experiencing delusions of grandeur. Wow, you tell yourself, that was awesome! So, you do it again. Then just once more. OK, one more time and that’ll be it. Suddenly, you’re NOT in control because the thing has taken over and rules you. It’s the most amazing insidious addiction, like mainlining a dangerous drug. You go off by yourself and do it, and you keep it totally secret. Well, I did. But back then, nobody told me it was a bad idea and my mother and my doctor actually approved! That doesn’t mean much, though, because even kids who know very well that it’s a bad idea still get hooked.

It amazes me to realize I acted out this ritual for 25 years, starting at age 10. Such a tender age. I look at girls that age today and I see how vulnerable they are – on the cusp of blossoming into early stages of young womanhood. (Unfortunately, I was forced to grow up too soon. Abuse is so ugly. Luckily, forgiveness is just as powerful.)

I live in the Los Angeles area – (lucky me, I live around the corner from steps to the beautiful Santa Monica beach). Los Angeles = Hollywood, where there’s probably more body-image craziness than anywhere in the US and maybe the world. If a woman can hang onto consciousness here and love herself exactly the way she looks, that’s quite an achievement!

So, I’m proud to say I’ve taken steps to being authentically me. I’m growing out my hair to its natural color – various shades of gray and white in front - and I’m still wearing it longish the way I like even though I get lots of criticism from people who say only young women should have long hair. Sorry, critics. I’ve joined NAAFA, the National Association for the Advancement of Fat Acceptance. What a revolutionary idea, right? Fat people have a right to be fat and live without prejudice. Huh? Even some of the most enlightened people in our society think it’s OK to poke fun at fat. Huh? Here’s the kicker: those of us who hate ourselves for being fat are inviting scorn. Ya gotta believe in yourself. The funny thing is I’m not fat at all – I just have a leftover warped body image which I’m working on. Being a member of NAAFA is part of my healing. Check out www.naafa.org. The biggest fat lie is that it’s OK to hurt other human beings who happen to be fat.

September 3, 2009 – "Delicious Read"

A woman who read a blurb about The Skinny told me she was looking forward to a “delicious read.” I’ll be interested to find out whether she finds it tasty after all.

Because of the early years of abuse it describes, The Skinny isn’t really a comic novel. Sorry if the title misleads. But the truth is I wouldn’t have survived this terrifying childhood without my trusty sense of humor. It’s there in my life and it’s there in my book. The glue that has held me together.

And not just the childhood was tough. It took me so long to get on a healthy path, my readers are shocked at the way I kept slipping back – 5 steps forward, 4 steps back - or sometimes 6 steps back or more! Ouch! Stumble, bumble, fumble, grumble, mumble, tumble, and finally: humble and aware. Hooray!

Such a happy ending! Not the book so much although the promise is there. It took me 7 more years from where I was at the end of The Skinny, to totally stop bingeing and purging. I was 37. That was a lifetime ago.

My therapist explains my life in such an interesting way – that as a child, I built a construct of how I thought it should be – a virtual life – because I had no guidance and no clue. Raw intelligence, curiosity, imagination, and will. Now, all these years later, the virtual construct is crumbling as I complete solidification. Yes!!

The last vestiges of shame skulk away and I can hold my head up, proud to be me.

May 22 – The Weight Monster Strikes

The weight monster is back and has me upset again – and I’m upset to be upset. Feel like a layered lasagna. Sure, I’d like to be svelte, but I’m happy to be healthy. No, I don’t like carrying around extra pounds, but I don’t want to overreact either – which I’m doing and I don’t like doing it and I’m hard on myself for doing it and that makes it worse, but I still can’t stop so I’m writing about it because that always helps.

I saw the nose doctor this morning. He had “warned” me that getting my sense of smell back would lead me to enjoy food more and we all know the evil implications of a woman who likes to eat. Sure enough, this morning, he walked into the examining room, looked at me, then actually walked over and poked me in the stomach with his index finger to show me how fat I’ve gotten! And, worse, I looked down at my little belly and found myself holding back tears. Tears! I should have bopped him one.

I’ve actually been struggling and lost 3 pounds from my high last week of, heavens, all of 128 pounds. Big effing deal. I’m down to 125 and sure, I don’t fit into my clothes from when I weighed 115, but do I really need to wear size 2 or 4 jeans?

After he poked me, he told me my face was fat too! Of course, he let me know the inside of my nose is beautiful! Whoop-de do. No fat in my nasal passages.

I left there and burst into tears and cried for about an hour while I pinched my poor little round belly. I felt my self-esteem coated with a fat layer of self-loathing so, being a conscious woman, I added a layer of compassion, but it soon got covered over with more upset. I’m cooking up an emotional casserole here. At least it’s not fattening.

I was in the grocery store and all the food started looking like poison to me. Except pineapple. Thank goodness for the big display of pineapples. It’s clear I could easily be anorexic if I let myself – which I won’t.

For a couple of hours, I hated image-conscious L.A. and men too. I thought about moving to Detroit and turning gay. Then I remembered the nose doctor is not just an ENT guy, he’s also a cosmetic surgeon. Figures. Screw him.

I'm thrilled to be getting good nutrition, to be able to eat and digest like a normal person, and now, after the sinus surgery, to be able to smell again. Yes, I'm gonna do my best to at least stabilize at this weight but if I don't, it ain't the end of the world. I have to go back to the nose doc in a month, and maybe I'll pad myself with a coupla pillows or get a real fat suit to wear. Will he poke my tummy and smile slyly then?

April 2 – Life After ED

It's been 10 weeks since I got my esophagus surgically "fixed" to palliate my digestive disease called achalasia - zero peristalsis in my esophagus. I can eat now, and the food goes down and stays down. It probably seems like nothing special to normal people, but to me it's miraculous.

Yesterday, fresh rye bread sitting on the counter called to me over and over, and I indulged in three or four slices, with butter. Delicious. Later, it was Paul Newman's version of Oreo cookies - which anyone who's read my novel knows brings back a painful history from early bulimia. I ate three or four of those, pulling them apart, nibbling, toothing off the filling. Yummy. I made half a turkey sandwich. So fabulous. I was really going to town. Mixed mineral water with chocolate syrup to wash the sandwich down. Suddenly, I felt full. Really really full - which to me meant there wasn't room for one more morsel of anything. In the not-so-distant past it would've just unloaded - no choice.

It was late afternoon. I hoped my new esophageal fix was gonna be okay. My surgeon had warned me that my stomach was tiny and would stretch in time, but I had to be super-careful until then because food could be in danger of the old backing up. I felt proud of myself for enjoying the indulgence and slightly worried that I'd overdone. I was not gonna take any chances. I wasn't hungry at all anyhow, so for the rest of the day and evening, I took nothing but pure filtered water and directed loving thoughts to all my digestive parts.

I woke up several times during the night to pee and poo - uncharacteristic. In the morning, I felt fine. Everything had passed through my system perfectly. No guilt. No throw-up. No heartburn. I made my usual morning protein shake, had a wonderful sandwich for lunch, snacked on fresh strawberries and pineapple. The rye bread is safely in the freezer. The cookies are safely in the cupboard. I'm not even tempted. I'm happier not giving in, but at least I let myself enjoy what I did.

I'm so happy. And this, despite still recovering from yet another operation - sinus surgery - a mere 2 weeks ago. Turns out the sinus problem arose from the same source - when food got stuck in my esophagus, my efforts to dislodge it created a runny nose and tearing eyes - and over the years inflamed my sinuses so badly they were completely clogged with polyps. Yugh.

But here I am, thrilled to testify that it's possible to heal an eating disorder and live a normal life. If you're having trouble swallowing your food, and it sometimes comes flooding up, I advise you to get a manometry test because you could have achalasia - which most doctors don't even know about.

Feb 27 – Part 3 -Achalasia – Did it come from Bulimia? Was I to blame? (Note: to read this in order, scroll down to Feb 25^th)

Achalasia is a rare disease of the esophagus – uncertain cause believed to be either neurological, auto-immune, or viral – in which the absence of peristalsis and tight lower esophageal sphincter (LES) make swallowing difficult and results in much of the food sticking in the esophagus until it goes down, comes up, or rots in there. Yugh.

On January 19, 2009, I underwent the surgical palliative for achalasia, a Heller myotomy and Dor fundoplication. Dr. Heller came up with the procedure named for him in 1919 when he had to open the chest in order to rip apart about 10 centimeters of the muscles of the lower part of the esophagus to relax the LES. Ouch! The fundoplication part is done by pulling a piece of the outer stomach over the torn muscles of the esophagus to block stomach acid from coming up even as the food goes down. Now the procedure is done laparoscopically, which I mistakenly believed would make it easy. No way! For about 3 weeks, l felt as though I’d been run over and my belly looked like a train wreck with 7 incisions and a black and blue mark the size of a slice of bread. Oogly!!

But, guess what, guys, it’s working!!!!! I can eat like a NORMAL person!!! It’s thrilling because even though I basically didn’t think I was bulimic anymore and hadn’t been for years and years, there was a teensy nagging part of me that said, Yeah, right, so how come your food keeps coming up, smarty? Who are you kidding anyhow.

I was feeling pretty down in the dumps and decided to have a session with my therapist – a wise man who consults via telephone as needed. I talked about how I wondered whether the bulimia caused the achalasia. I’ve asked the doctors and they tell me there is absolutely no connection, and I wonder how can that be? They say there are about 2,000 cases of achalasia diagnosed in the US yearly and they’ve never heard of bulimia being involved so it must be a coincidence.

My therapist said he thought it wasn’t that simple. It’s a NEXUS, he said, of physical, emotional, spiritual, and karmic issues and that nexus comes together in my esophagus – which is my particular fault line. So when I was ten years old and sopping with grief from my grandfather’s death, and I stuffed myself with lots of food and then felt it was too much food for my little digestive system to handle, intuitively I was going straight to my fault line. Little did I know, I would get addicted, making my fault line central. When my therapist said this, it felt like getting hit with a bolt of lightning. It kind of tweaks the way I see bulimia now. By adding the possibility of a fault line, it removes the idea of fault.

Big idea to swallow, but I’m handling it.

Whew!

Feb 26- Part 2- Sickly and Confused

For twenty years, I lived with an undiagnosed and misdiagnosed condition. It got worse. I had tests. Doctors told me I had GERD and had to take medicine for acid reflux. The medicine gave me cramps and constipation, and didn’t stop the original symptoms. They told me I had a nervous stomach. They told me I had an incurable degenerative disorder. My voice turned hoarse. I developed asthma. I used inhalers and steroids. I got thin. I began having bouts of bronchitis and then, pneumonia.

A GI doctor I went to heard my story and said, sharply, “If you had bulimia for that long, your Lower Esophageal sphincter has to be SHOT!! You have acid reflux so bad that you’re aspirating your food into your lungs.” He did an endoscopy and, wonder of wonders, concluded that my lower esophageal sphincter was shot! He wrote that it was open all the time and I needed surgery to close it. That was in August of 2008. We went to a surgeon who asked a bunch of questions and said that didn’t sound right. He would ask that GI doctor to order more tests and we should wait to hear. Silly of us, but we waited. Nada. We let it slip.

In November of 2008, paramedics transported me by ambulance to the hospital ER because I could just barely breathe. It was touch and go for a while. My 5^th bout of pneumonia in a year. During a 10-day stay, stumped by my symptoms, one of the doctors ordered a gastric-emptying test to determine how long it took for my stomach to pass food along to the small intestine. Me, the slow eater, had to gobble down medical eggs in one minute and then have my insides photographed every 15 minutes for an hour and a half. When the test was over, the technician looked over the results and cried, “I don’t know what to report because the food never left your esophagus!”

“That’s exactly what you’ll report!” I said. That was when I first found out that food got stuck just as I’d suspected.

The same GI doctor visited me in my hospital room and had no trouble telling me I must have achalasia – that my Lower Esophageal Sphincter was TIGHT SHUT and needed loosening. Exactly the opposite of what he’d said so smugly!!

(to be continued)

Feb 25, 2009

Part 1- No-Fault Fault-Line: the beginning

For 25 years – from pre-adolescence way into my mid-to-late thirties, I walked around hiding what I thought was a shameful secret: I made myself throw up. For almost the whole time, I thought I was the only one in the whole world! As destructive as the eating disorder was, the shame I carried added to the destructiveness and made for some mighty low self esteem. (I hug that sweet little girl part right now.) But I’ve always been strong and although I didn’t like the addictive, secretive me, I liked the creative, funny, assertive, smart, risk-taking me, and that energy got me through. (also got me into plenty of risky adventures I’m lucky to have survived)

About ten years into bulimia-free living, in my mid-forties, I started experiencing extreme chest pain diagnosed as esophageal spasms. Doctors didn’t want to give me pain killers for fear I’d become addicted. I agreed. Along with the heart attack level pains – (now known as NCCP or non-cardiac-chest-pain), came trouble swallowing. In the middle of eating, I’d get a sticking feeling in my chest, my eyes would tear, my nose would run, and the attack would end with food going down or coming up. What I didn’t know at the time - because doctors couldn’t figure it out -was that I had developed achalasia.

(to be continued)