The flu is a great bargain

Just think: only four days of this and it will be gone.  You don’t get that kind of deal with other illnesses.  When I first got my mental illness, some 33 years ago, I thought it would only be a few days.  If that was all it had been, of course, I would have forgotten it ever happened.  But no, mental illness isn’t the great bargain that the flu is.

You get chicken soup.
You get sympathy.
You might even get flowers.
People “get it.”
People don’t blame you for it.
It’s not a “moral issue.”
When you miss work due to the flu, you return to work you still have your job.
You don’t get discriminated against.
You don’t get locked up.
Unless you die, you don’t get your belongings rifled through.

Yeah, you feel damn crappy.  But others have been where  you have been. They tell you to get rest and drink fluids and it will run its course.

I feel blessed.

Illnesses and social media

A classmate recently revealed on Facebook that she has been diagnosed with breast cancer.  It seems weird to announce this on Facebook but a lot of people post their medical statuses online.  My heart sure goes out to this person.  I guess that’s one thing that Facebook is for, updating people and letting them know where you’re at.  Near to this entry was someone else’s posting that their grandmother had died.  Again, rather heavy news, but how else does one get the word out in this day and age?  I myself posted here in this blog a detailed entry about my flu, then cross-posted the entry to Facebook.

The good thing is that you can use Facebook to get support from your friends.  Support, love, and prayers.  Maybe even connections you weren’t aware of before.  You can get medical knowledge, maybe even links to doctors and treatments you wouldn’t otherwise find.  You can meet others in the same boat.  Who knows, someone out there might have a magic cure for the flu.

Okay, okay, those of you who have been around this blog a while know I’m getting at something.  Of course I am.  I was not on Facebook in 2008 or 2009, not too many folks from our graduate school were, but what if I had put, “My anorexia is returning”?  What then?

Even if Facebook had existed for me back then, I wouldn’t have posted such a thing.  Would I have gotten support, love, and prayers?  Or remarks such as, “I’m sorry you’re choosing this path”?

Nowadays, I’m rather careful about posting medical status for that reason.  I’ve wised up.

So, back to bed with this fever…do you feed a cold and starve a fever, or is it the other way around?  Oh yeah, I can’t talk like that.

 

 

 

I have the flu

I guess that’s what this is.  I have a persistent fever.  Saturday night I passed out just outside my kitchen.  I thought it was some “eating disorders” thing, maybe electrolytes.  I was so out of it.  I didn’t hit my head but knocked over some stuff.  I have no clue how long I was on the floor, probably not that long.  I didn’t have any energy when I got myself up, so I couldn’t pick the stuff up, just left everything there in a mess, and dragged myself to bed. All the things are picked up now.

In the morning…well, if you could call it that…I don’t sleep, as you know, so night and morning sort of blend in, night after night.  I sleep maybe a couple of hours and that’s it.  This has been going on since August 2011.  I believe that even eating perfectly, my body will take another year to fix itself and sleep again, but anyway, morning came and I readied myself for church….

I had my tie on, my name tag, all spiffed up, showered and clean hair and took Puzzle out and then………forget it.  It was obvious I would not make it to church or make it anywhere.  I was just plain sick, dragged out, getting sicker by the minute. It hit me all at once.  I’m told that the flu does this.  Like a brick slamming you in the head.

I immediately went to bed.  I was in and out of bed all day, not sleeping at all, just sick, delirious at times, barely able to stand up.  I shook all over from the cold.  I couldn’t stay out of bed long.  I wondered how I would manage all alone.  I had the Tylenol in a bag in the closet and finally got the strength to dig it up.  I took some.

I located a glass thermometer.  It sort of makes me sick to have the darned thing in my mouth, but I knew I had to see if I had a fever.  I knew I had swollen glands…but was this my imagination?  The first time, the thermometer read 99, unusual for me.  Within hours, it was 101-1/2, then up to 102 and hung there for a while.  Then, suddenly, down to 97.  I thought I was cured…then back up to 101-1/2 where it seems to be presently.  Tylenol is no longer bringing it down, but I have only had two doses.  I don’t want to take too much.

I had a bad experience with the second dose of Tylenol and  I wasn’t sure what that was about.  I took it with a few gulps of cold water and no food.  Apparently, when you have the flu, taking Tylenol on an empty stomach is just plain not a good idea.  Or at least it wasn’t a good idea right then.  My stomach immediately went into spasm.  Not nausea, spasm.

I have no clue what this was about, but it was rather scary.  My stomach would not stop doing this thing.  I was sick with fever, shaking from the cold as if it were zero degrees in here, and also barely able to breathe from these spasms, shaking all over, unable to get out of bed.

Now really, what a basket case I must have looked like!  I had the phone in my hand, telling myself…well, I had no clue when this was going to end, it just went on and on and on!  I knew if I phoned 911, with my mental history, they would just have assumed I was having a panic attack.  But no, this was not a panic attack at all.  I told myself my stomach had better stop…how long had it been?  Fifteen minutes?  I knew if I phoned anyone, I would not really be speaking, I would be gasping, so whoever it was on the other end of the line would undoubtedly assume some horrible fate had befallen me.  What would I do if the phone rang?

I had already phoned my doctor about the fever, twice, about five hours apart.  I never got a return call.  I believe it was one of those days, just my luck, that her pager was malfuctioning.  I know she’d have called me.  I rarely call her unless it’s something like this.

Finally I phoned my shrink and did get her.  This was the only medical advice I was able to secure.  Well, better than showing up at the ER and getting misdiagnosed with a panic attack, right? Or getting “sectioned.”  For a fever?  Yeah, it would just be my luck.  It’s the fate of psychiatric patients who show up at emergency rooms.

I have had some pressure in my chest that radiates into my neck.  Not sure what that’s about.  I need to go to the doc, I think.  Not looking forward to it.  Not at all.  I can’t even get there. Too sick to walk, have to get a ride somehow.  These DMH people said to phone them and they’d help…but will they show up on time?

It’s really hard when you can’t get anyone to phone you back, voicemail is full, phone numbers and pagers malfunction, personnel are taking mysterious long term sick leave….gee.

I am all alone here with no one to help me.  But I have Puzzle.  We’ll stay warm, wrap in blankets, and do just fine.

 

 

Have you been asked to choose between your eating disorder and some HUMAN? It ain't so simple….

Yes, we’ve all been told that eating disorders are just like alcoholism, that we can stop whenever we want, that these are addictions, that it’s just like the bottle, that all we have to do is make up our minds….

…that all we have to do is go to “treatment,” that there are plenty of rehabs….

…these rehabs are affordable….insurance pays for them…we all have wonderful insurance…we can all get loans….We can all buy plane tickets to these places…..Or take out our wings and fly…..

…that all we have to do is make up our minds, the monster “Ed”, or our loving families….

…that truly, we must be evil people because we are choosing, over and over, our eating disorders, that really, this shows just how weak and immoral we are, that truly there must be something wrong with us that “treatment,” which is plenty available and has been around for years does not work on us….

…that there is oh so much research done on all eating disorders, for certain, research that is applicable to us so surely, we should have gotten better by now, surely this means the fault lies with us, right?  We are to blame, not the System….

It’s time for our relatives and friends to disown us, right?  Cuz really, we have chosen to be sick!  We have chosen our eating disorders over these oh so loving relatives and friends, and they should be insulted.

Well, folks (weaving in and out of lovely sarcasm here)….eating disorders are not the same as alcoholism.  There are similarities, but they are not the same.  A person can be an alcoholic and also have an eating disorder, true.  But you can’t say that an eating disorder is purely an addiction.  I personally believe that eating disorders are far more complicated than putting down the food like you put down the bottle.

Why?  We’d all have it solved by now if that were the case.  But we don’t.  Let’s all just quit food, stop eating, and see what happens, eh?  I doubt that will solve the problem.  Or we can follow strict meal plans and police ourselves but that sounds to me like another obsession, hardly freeing.

Funny story: When I was a slave to a meal plan, I was like a drugged robot, and I had no time for anything but weighing and measuring.  That was slavery for sure.  I’m glad that “phase” didn’t last too long.  Food prep took hours daily, and my food bill put me over the edge financially.  I had to have “special food”….ridiculous.

One day, while still following the slavery meal plan, I ended up (this is funny) at a halfway house, and had to sneak in my “special food.”  It started to stink and get moldy…I had to lie to the halfway house staff (per orders the person who put me on this meal plan) and pretend I wasn’t hiding the “special food” on the premises…had to lie and say I was eating regular food…had to cover up that I was actually measuring everything, storing everything in Tupperware containers….tried to do dishes in the bathroom with hand soap….my poor roommate said the room smelled like a fart…she was right….

I mean, get real.  Those nightmare days are over.  Many, many years ago, the years my dad was dying, to be exact…..

My point is this: We did not go to Amazon, browse around, and choose “Eating Disorder.”  We did not have our eating disorders shipped to us and these eating disorders didn’t come to us in packages.  We can’t recycle them or toss them out like you toss out a substance such as a bottle of whatever.  They aren’t substances such as drugs or alcohol that you can live without.  As a matter of fact, our doctors are insisting that we take in food.   That food is essential to life.  With eating disorders, there is no “substance” unless you count auxiliary substances such as laxatives.

The problem is in our heads, or wherever it is that thought happens.  You want us to toss that out the way someone can toss out a bottle?  Just try it.

I have never heard some loving family member say to someone with cancer, “It’s your cancer, or me.  Your choice.  You choose.”  Did my mom say that to my dad when he was dying, some 15 years ago? Did she turn her back on him when he needed her most?  Was she insulted when his tumor got larger, thinking he had blown it again, turned his back on her?  Did she get mad at him when the radiation didn’t work, tell him he had bad morals, that it must be his fault?

No, she didn’t, but she sure as hell hated changing diapers.  At least she admitted it.

 

Poops and Roses

Poops and Roses

Written April 9, 2012, at the Watertown Free Public Library

By Julie Greene

 

Picking up after Puzzle is one of those simple daily tasks that is as much a part of my life as is my habit of writing every day, and waking after sleep.  I don’t ever feel repulsed by Puzzle’s poops.  They are digested food.  Nature takes in and gives back.  Intake and output.

People talk about stopping to smell the roses.   I never take this advice.  I’m not a flower person.  It gets to me that such a big deal is made of these blossoms that sell for hundreds at shops.  The human tear is just as beautiful, costs nothing, and unlike a bunch of roses, serves a practical purpose.  Tears cleanse.  Tears are output.  Tears express.  Tears teach us.  Tears can pray or cry out or speak pain or beauty or gratitude.  Tears can say “I love you” every day, but hardly anyone can afford the daily expense of roses at a flower shop.

No, I don’t stop to smell roses, but I always stop when Puzzle gets into that funny position I have gotten to know so well, one that is uniquely hers.  I let her take her time.  Her back end bobs and quivers as she skillfully moves her stool toward her anal opening until it slides out—and then another, and another.  She’s not a dog that waddles along while she poops, so her droppings don’t fall in a long trail, but rather, in a single pile.

Sometimes, a stubborn last piece gets stuck to her, and refuses to fall as it should.  She waits, but not very long.  She favors Plan B.  She twists around, and in a flash, snatches the thing as a tasty appetizer.

Humans don’t do this.  I question our sense of superiority when we say these acts are disgusting and done by animals only, thereby defining ourselves as so-called civilized, that is, distinct and separate from Nature.  Perhaps we have gone so far that we can no longer do something as simple as poop without pills, enemas, and surgery, coupled with the obsession that the toilet as well as the colon must be kept spotless.  I question why these private areas that no one ever sees must be cleaned raw while we pour our waste into precious wetlands.  To me, being civilized means not only caring for the planet and my surroundings as best as I can, but capturing and holding onto the understanding that I as human am part of Nature.  I have input and output.  (I have my ugly and disgusting side, too.)  I’m a contributor to the goings-on, a member, an adult.

I kept two flip-top Baggies in my right pocket and one in my left.  I used the one on my left first.  I stuck my right hand in the Baggie as far as it would go.  Then I used my right hand, protected entirely by plastic, to pick up all the pieces of poops.  With my left, I turned the Baggie inside-out, shook the poops to the bottom, and twisted the bag shut.  I gently placed the warm bag into my left pocket, and forgot about it until we arrived home.  At our parking lot, I tossed the poops into the dumpster, and never saw them again.

After this morning’s walk with Puzzle, I had the occasion to walk into the hallway trash room.  Someone had tossed out a bunch of withered flowers.  Perhaps they were left over from Easter.  This was the day that Jesus rose from the dead.  These flowers were not roses and were well past rising ever again.  I wasn’t going to stop to smell them, or stop to smell anything else in the trash room.  Sadly, I also saw cans that hadn’t been recycled, empty glass bottles, and even bottles that could have been returned to the store for money.  One of these days, I’m going to get very uppity about recycling around here.

But I didn’t stop.  It wasn’t time to think about the cycle of trash, which was already dead, not now while I was still living.  I slipped back into my apartment. I sat on my couch.  Puzzle, who was usually tired after her walk and meal, trotted up to me, and hopped up onto her rear legs, sliding her two front legs to the right of me on the couch.  She twisted her back toward me, exposing first her side, and then, bit by bit, her chest and belly.  Her hair under her was so sparse that I could see her pink skin clear through.  I petted her over, and over, and over.  And then, when I was done, I bent over, and touched my nose to her chest.  I stopped.  Then I inhaled, deeply.

 

********************

Note: I love this essay, but due to its TMI subject matter, I doubt anyone would want to publish it.

Note also: I changed Puzzle’s diet in May 2012 (a month after writing this essay) and it’s been ages since she’s engaged in “Plan B.”

Note also: This essay illustrates a handful of Unitarian-Universalist Principles.  I’ve just come to realize this.

Note also: Photo not included.  Perhaps the reader is appreciative.

What happened to me after Alcott, and text to the book launch speech I had prepared to give at Alcott, Walden Behavioral Care, in August 2012, but it never materialized

I was incarcerated at the Alcott Unit, Walden Behavioral Care, from July 19 (I ended up in the ER on July 18 and they had no clue what to do with me) until  August 3, 2012. This was around the time of the release of the paperback version of This Hunger Is Secret.  

The book is of course available for sale in .pdf form, Kindle form, and paperback form and everything is all okay and to my liking finally.  If you want the Kindle form, you do not need a Kindle device.  You can download the Kindle software for free and have a version on ALL your computers and other devices that will run the software such as ipads.  It is adware free and will keep your page marked.  To those who live near me, I have paperback copies available that I can sign for you, and will be giving readings locally, so stay tuned for news about upcoming appearances.  If you want me to show up for your organization, let me know.  I give an awesome reading and I’m also funny.

Anyway, near the time of my release from Alcott, around Aug 1, to bribe me into staying the weekend, the social worker promised me a book launch party.  Wow, I thought this rather awesome.  “Monday,” she said.  “But you have to eat.”  I got the idea.  I knew the insurance company was on their back about me.  They did not look good in the eyes of the company, because I had lost weight, and losing weight means bad, meaning maybe the hospital might not get money…I am not really sure how it works, just speculating.  However, when I was admitted, my weight was not the issue, not this time, and even though my weight had dropped, my weight fell within “normal,” and I didn’t think there was any medical need to put weight on me so drastic that they had to keep me inpatient.  Actually, weight loss mostly meant that the severe edema I had come in with had reduced.

I got panicky, thinking, “If I stay the weekend, I will get fat.”  Of course, I nothing of the sort would have happened, but panic did set in.  I was not going to let them have this control over me.  So I insisted that they let me go on Friday, and they did, finally.  I’m not sure what I weighed when I got out, but I had done so much extreme bingeing for months that I was still rather bloated, even after being in Alcott stopped the behavior and gave me a little break from it.  I recall coming out, getting on the scale when I got home, and feeling rather devastated because I had hoped to have dropped more.  It took a long, long time to recover from all those months of massive binge eating.

And by the way, my body does not throw up.  It refuses.  I’m stuck with whatever food (or non-f00d) I put in.  Last May I got sent to the ER and had to have my insides cleaned out, that’s how bad the binge eating was.  My feet were the size of my head and didn’t fit into my shoes at all much of the time.  I was suicidal over the weight I had gained.

I was mourning the loss of thinness.  When you lose the dips in your body (we all have ones we love), the bones that stick out that shouldn’t, and the skinny, skinny arms, we grieve.  I found the grieving tough to bear.  I had no one to talk to about it, no one to relate to, and if I tried to talk to anyone, I was told how wrong and sick I was, or I was told rather rudely to “get over it” or to “accept” it or “it will pass” or whatever…by people who had never been there or people who thought they knew all about eating disorders but really knew nothing at all.  I was trying to find a therapist but no one took Medicare and Medicaid.  Not only that, but I was suffering from severe paranoia, so I isolated myself to the extreme.  It was hard for people to tolerate me because I was so isolated that on the rare occasion that I did speak with anyone, I had no clue how to act.  All my “stuff” would come overflowing out of me all at once, all the bottled-up feelings.

It was a deadly situation.  It’s sad that the hospital could not help me.  They don’t treat binge eating at Alcott, despite their publicity and claims that they treat all eating disorders.  They don’t.  It says on their website that they do, but this is not true.  Their admissions people will tell you, too, that they treat all eating disorders, but these admissions people are sales people and not clinicians.  Their binge eating groups, at least at the time I was there, were held off the unit and I was not taken to these groups even though they said they would allow special exception and take me.  They have a binge eating program, but it isn’t inpatient.  My insurance does not cover this program, period.  My insurance, public insurance, only covers inpatient.  Their inpatient treatment is about weight gain and they added the “band” system for teaching people to stop vomiting in the bathroom, something I’m not going to get into because it didn’t apply to me.

What they didn’t know was the truth about my psychiatric condition.  They never found out just how suicidal I was over my weight.  They didn’t really listen to me.  When I tried to talk to most of the counselors, they appeared bored, like they could hardly wait for their shift to end, so I just gave up.  Only one nurse seemed to have both expertise in eating disorders and interest in my particular case, and she didn’t have enough time to talk to me.  They never gave me a psychiatric evaluation, and as I said in my previous post, the psychiatrist barely spoke with me the whole time and took no interest in me.  They may have thought I was nuts but even though some of the nurses spent time with me, they did not recognize paranoia.  This wasn’t their fault.  They didn’t have the training to recognize it, I suppose.  People who are paranoid have ways of hiding it.  We do this out of fear, terror.  I did get some comments from the patients, little observations…it’s amazing….They may have guessed….I don’t know.  I didn’t even realize how scared I was.

I didn’t realize they couldn’t help me at first.  I kept an open mind.  I was willing to give it a go.  The head nurse, who is truly an exception among the staff, took me aside and spoke with me one day. I was impressed with her because she obviously spent her own personal time researching ED, unpaid time.  She cared.  She asked relevant questions.  Then, it was like she disappeared, had no time for me, and I wanted desperately to speak specifically with her because she had the knowledge.  She mentioned Naltrexone to me, a med for binge eating.  I felt like an idiot because I didn’t write down the name of the med.  She said she recommended the med to me, and would mention it to the doctor and have him put me on it right away.

Then, she was gone for days.  Not one staff knew the name of this med.  Not one staff knew what drugs were given for binge eating.  The doctor didn’t even know.  I said, “All I can recall is that it begins with N and that it is given for OCD off-label and for binge eating off-label.”  No one could help me.  Did they not have knowledge?  Days passed.  I wanted to start on this med and I felt that time was wasting, that insurance was paying for my time spent there needlessly.

Actually, all you have to do is Google “meds for binge eating” and eventually you’ll get to Naltrexone.  It’s an opiate antagonist.  I didn’t have use of my laptop at the time or I would have done this myself.

Finally, one of the staff did this himself.  This in fact was A, the night nurse.  He did it with his iphone.   Any seventh grader could have done this Googling, too.

So I went to Dr. W and explained that M, the head nurse had recommended Naltrexone.  First of all, for the first nine days  I was there, Dr. W did not know I experienced binge eating because I guess he never read the admission notes.   He said, “You don’t binge, do you?”  I was shocked, too shocked to be enraged.  Didn’t he even know why I was there?  So I asked him to put me on Naltrexone, saying the head nurse had specified this drug.  He flat out refused.  A few more days passed, finally the head nurse cleared this up, a few more days passed and red tape, red tape, and six expensive days later, I was finally on it.

I felt no need to stay longer, feeling I was getting nowhere.   I had no clue if the Naltrexone would work at all once I left and tried it out in the “real world.”  I left Alcott, bewildered….Having received no treatment except a pill (it turned out that the Naltrexone never worked), no groups for binge eating, nothing….I knew I needed to leave and seek care elsewhere.  I felt gypped and lied to.  Not only that, but I had been sectioned there.  It was all so confusing, and with people criticizing me for being so “down on the system,” saying I was the one who was wrong, that there must be something wrong with me because treatment at Alcott didn’t work, I felt so downtrodden….

A few weeks after getting out, I went to my own psychiatrist and the first thing she did was to recognize my paranoia.  I hadn’t seen her for months.  I had been avoiding her.  She was shocked that the hospital had not properly evaluated me.  I, too, am shocked that I went into detail with the hospital staff about some of my symptoms, but they did not recognize what was going on with me.  I truly did ask them for help.  I guess they are not properly trained to recognize psychosis.  I now take a low dose of Abilify which tones down the paranoia enough to be manageable.

Dr. P put me back on Topamax.  After Topamax had pooped out I had stopped it months previously, but when I restarted it late August, a few weeks after getting out of Alcott it worked again.  So the bingeing nightmare ended right then and there, late August.  I am grateful.

A week following, I brought in Puzzle’s papers for Dr. P to sign.  I must say, life sure has been better since August 29, the day Puzzle moved up in the world.

But I need to deliver to you what I promised.  The day before I left, I had hoped to have a BOOK LAUNCH right there on the floor, so I wrote a speech for everyone.  I wrote two speeches, but I’ll include one of them now and one some other time.  After the speech, I was going to read from the book, I forget which excerpt, but I had one planned out.  The book launch would have taken place in a large room, known as the Group Room, where there would have been patients and staff seated and listening.  This was the intro:

“That was the intro to the intro, of course so here’s the intro:

Hello, everyone, welcome to my book launch party.  Most writers, of course, hold their book launches–well, where else?–at bookstores, but as circumstance has it, I have the extra good fortune of sharing today with the most resilient and strong-hearted people I know–everyone in this room, some of whom, like me, have eating disorders.  It is truly an honor, and of course, a total blast.

Before I read from the book, I will tell you how this project came about, and I promise it won’t be boring.  I began writing This Hunger Is Secret in 2007 while at Goddard College.  I was studying for my master’s degree in Creative Writing.  I told my advisor, Paisley Rekdal, that I wanted to write a memoir about my mental health history.  All the folks at college knew that it isn’t everyone that survives over 50 psychiatric hospitalizations and then ends up in graduate school.  Paisley suggested to me, one day over coffee, that I start writing the book with the story of my first hospitalization in 1983, and then move forward or look back as I saw fit.  Winters are mild in Washington State, but cool enough so that Paisley and I were armed with warm winter jackets, and the steam rose from our coffee and clung to the window panes.  Outside, the sky was dreary and the grass dry and dead, but the excitement and electricity that Paisley and I felt over this project was enough to warm the entire campus.  I flew home and dug into my writing.  Over the next couple of semesters, my work took on a solid shape.  Under the tutelage of poet Beatrix Gates, I learned about color, balance, and rhythm.  Darrah Cloud, poet and playwright, guided me through the final stages of the manuscript.  I loved it when Darrah called me “Kiddo,” and it’s kinda funny that when all was said and done, Darrah knew one heck of a lot about me, even more than my therapist.  Darrah was also one of the first to know that my anorexia was returning.  She never judged, criticized, or lectured.  A couple of weeks before my manuscript was due to be mailed in, my therapist was talking about hospitalizing me. I was scared, or maybe I should say, terrified.  Darrah heard it in my voice right away when I phoned her.  She said, “Send me the file as is, and that way, no matter what happens, I’ll have it.  I believe in you, Julie, and I adore this book.”

The next bunch of weeks were tense, but my thesis was approved, and the last minute before mailing it, I changed the title from something I can’t remember to This Hunger Is Secret: My Journeys Through Mental Illness and Wellness.  I stayed outside of locked doors.  I was all set for graduation.  By sheer luck, my therapist allowed me to fly back to Washington.  I was required to give a reading from my book.  Yeah, I was scared and starving, but for whatever reason, I read with a passion that I never felt before.  A couple of hours later, I was among ten students to be awarded degrees.  We all gave speeches.

My speech was the story of how I got to where I was.  It could have been anyone’s story.  I had defied the doctors, who had told me I’d never make anything of myself.

I’ll bet a lot of you in this room have been told that, patients and staff alike, that you’re a loser, that your take on life is skewed, that you have some chemical imbalance and that you only should hang out with other people like yourself in a safe little environment such as this.  Should we believe this?  Should we believe what those doctors, teachers, bosses, friends, family, and even parents said, that our bodies aren’t right, that our minds aren’t right, that we just don’t belong?

What I found out is that there is no wrong way to think.  My mind works differently than other people’s.  It’s a little uncomfortable occasionally.  I’ll bet different thinkers–I’ll repeat–different thinkers, such as Barack Obama, Martin Luther King, John Lennon, Virginia Woolf, Steve Jobs, and Albert Einstein all had their share of anguish.  And who am I to compare myself like that?  I mean, look where I am!  Alcott?  Look at this!  (Show hospital band.)  Pssst…it’s not even green.

Are my words any less valid than those of the folks outside locked doors?  I don’t think so, cuz you’re all sitting here waiting to hear my words.  Yes, the whole world is waiting for each and every one of us.

When I was finished with my little graduation speech, which was not done behind locked doors, I turned back to Darrah to embrace her.  She held me, and then, with tears in her eyes, turn me back around, saying, “Julie, look at your audience, just look!”  What I saw before me were hundreds of people, some of whom I did not even know, clapping and cheering in a standing ovation.”

******

When I left Alcott, I was not allowed to read this.  I was shooed out the door and barely anyone said goodbye to me or seemed to regret my leaving.  I tried to read from my book at lunchtime, but I was told rudely to “hurry it up, we want to play Trivia.”  Like Trivia was so important?

Actually, what I did read was barely heard.  I don’t know why no one seemed to hear my words.  I will repeat them here.  I read the text to my second dedication page of the paperback version, 2012, of my memoir:

To the awesome patients at Alcott
and to everyone everywhere
who suffers from an eating disorder
or any mental illness:
Let us tell our stories.
Let us stand and shout our words
to the world,
and never, ever
shut up.

 

Another excerpt from my journal, July 2012, Alcott Unit, Walden Behavioral Care

To survive Alcott, I made a list of things I liked about myself.  I thought I’d share it with you today, maybe it will help someone.  The list is unfinished.  Please read what I wrote afterward.

I wrote the following in July 2012:

I am actually the bravest person I know.

My body is more resilient and durable than the average human body.  I have excellent physical endurance.

I am articulate.

I am well educated.

I am a skilled writer.

Some people think I’m wicked funny.

I’m wicked smart.

I can turn on the charm.

I can turn on the wit.

I can turn on the good manners.

I look cute in a tie.

I am an innovative knitter.

Puzzle is the best-dressed Schnoodle in New England, wearing her L.L. Greene sweaters designed and knitted by me.

I don’t put cute puppies and kittens up on Facebook, nor do I quote God.

I tell it like it is.

I say what I think and encourage others to do so as well.

I am good with money and write up a budget I can follow.

I don’t think I have bounced a check since the 1970’s.

I actually enjoy being poor and wouldn’t have it any other way.

I am wicked good with computers.

[skipping this next one, I have mixed feelings about it.]

I am car-free.

I am proud that I never got married.

I like my name.

I am proud of my past, my history and heritage.

I belong to an awesome church.

I am a squeaky wheel.

I overcame many bad habits that I picked up in the mental health system, including whining, rocking, and speaking like a child.

I quit smoking.

I had the same wonderful partner for 13 years and we were best buddies for four previous years.

I am a straight-A student.

I have written 5 books [now, 6].

I am a two-time [now, three] National Novel Writing Month winner.

I have written a lot of music.

I can type without looking at my hands.

I own over 700 books.

I give a damn good reading.

I am good at public speaking.

I am a member of the Gold Key Honor Society.

I ran a 5k at age 52.

I performed stand-up comedy in a bar.

I once hopped on my bike and rode 100 miles without a map and 45 cents in my pocket.

I hitch-hiked across the country with my dog when I was 21.

While undergoing brainwashing by a religious cult, I figured out what was going on, secretly tried to alert others, and got kicked out of the cult.

I make sarcasm fun.

I had sex in the McLean Hospital tunnels, made famous in Girl, Interrupted (not exactly the mile-high club).

I am a good storyteller.

I am published.

I was on the front page of the Watertown Tab once, above and below the fold.

I got a standing ovation at my grad school graduation.

I earned my undergrad degree summa cum laude.

I survived the death of my partner.

In 2005 I was brave enough to fly to the UK to meet a man I met online.

I am capable of falling in love with a person of any gender.

I am out of the closet.

*****

It appears that I ended the list here, though I intended to continue.  I had not run out of ideas but had run out of energy and time and perhaps had plenty else on my mind.

 

What would I add now?  A lot.  I have accomplished quite a bit since that time.  I am in a much better space than I was then, too.  I don’t need a list to remind me that I am a worthy person.  In addition, I don’t need to prove to anyone else that I am a worthy person and deserve space on the planet.  All humans are worthy of that.   My paranoia may tell me that the planet is trying to kick me off, but the first Principle of UU tells me THERE ARE NO ASSHOLES HERE.  I can look at Puzzle’s cute little face and that tells all.

 

An excerpt from my journal from my stay at Alcott, Walden Behavioral Care, July 23, 2012

“I just talked to Dr. Woo a bit ago.  I felt that he had no interest in me.  I felt that he knew nothing about me and didn’t want to know anything, either.  He seemed to care [more] about my weight than anything else.  It’s not my weight that’s going to kill me right now.  It’s how I feel.  He asked me if I had any psychiatric issues and I tried to refer to my list.  Already I felt like I was being pushed out the door.  After I said a few sentences he wanted to end the conversation, then as I read my list he wanted to end the conversation partway through several times.  I had to talk real fast cuz he was pushing me out the door.  He was switching from page to page in my chart and I sensed that he was doing “paperwork” with it while I was speaking and he didn’t even hear me.  I left feeling like I’d been through an assembly line.  What are these psychiatrists for?  Deb also only cared about my weight and nothing else.  This person is supposed to be part of my team.”

Copied verbatim

Five Fundamental Rights…Cross-posted…Alcott Unit Walden Behavioral Care Human Rights Case…

Hi folks, it’s been a while since I’ve posted.  I’ve been really busy.  Anyway, I’m shooting off an e-mail today and I’m making it public.  I didn’t put the name of the person I’m sending it to in the title of my post to avoid the Big Google machine.

I’d like to know from those of you who have been to Alcott (Walden Behavioral Care, Waltham, MA) recently:

Are they allowing you telephone privacy?  Do they let you have privacy on the phone if you ask for it?  Do they point out to you that you have this right under law in all cases and that everyone has this right no matter what the situation is?  Or is it only in “special cases”?

You are allowed a confidential call no matter whom you are calling.  It doesn’t have to be your therapist or your lawyer or a “special situation” and you do not have to be a certain age.  It can be your friend or your sister or your voicemail.

The only way they can say “no” is via a doctor’s order, and legally they should not be monitoring phone calls unless there is a doctor’s written order saying so.

I’d like to know if the Alcott Unit is following the law, and I have no way of knowing unless you folks let me know.

Anyway, here’s the e-mail:

Hi Lizbeth,

It has been a month since you phoned me and said paperwork regarding the telephone rights at Alcott was being assembled and sent to me.  However, I have received no paperwork from you or from the hospital.

For the entire time I have had this case open and running, paperwork has been lost, forgotten about, misplaced, not sent, and disregarded.  At first, I was surprised that this kept happening, but after a while, I told myself that “stigma” is part of life.  As a mental patient, I am on the bottom of the totem pole, and I have to fight to be heard.  This has been the pattern of my life since I became a mental patient over 30 years ago.

Are these Five Fundamental Rights meant to protect us and allow us respect and decency?  Or are they merely there on paper, lip service only, meant to keep us happy and shut us up?  There are gross human rights violations on every psych unit in the Commonwealth of Massachusetts.  I have seen these things happening and I am not an army of one.  I have a masters degree in creative writing and have written articles and books about these violations, past and present.

Are the people in our state government who are supposed to be protecting the rights of mental patients really doing their jobs?    

I am going to find out.  

Julie Greene

So, I haven’t sent off the e-mail yet.  Wish me luck.

Some background info, for those of you just popping in:

The Alcott Unit is an eating disorders unit.  It’s like a psych unit only specialized and has very, very restrictive rules.  The population is different.  Younger and just about all female.  Yeah, I know, the ED population isn’t all female but that’s who ends up there.  These are scared kids and they want to phone home, but guess what?  The phones aren’t private, they are in the hallway where everyone can listen in on your calls, including staff.  Of course, it’s deliberate.  They want to keep you under their watchful eyes and ears.

However, the law states that we mental patients are allowed confidential phone calls.  Hall phones without any enclosures are not lawful.  I petitioned for enclosures again and again and was turned down.

There is no medical reason to deny telephone privacy, none whatsoever.  The staff want control over the patients and they don’t want the patients yammering to their parents, friends, and spouses about how bad the care is there.  They don’t want information about mistreatment and neglect leaking out.  That’s the real reason.   That’s the reason on many units.

Any patient who poses a threat to the unit (like me) the unit will not treat, will mistreat, or will discharge.  That’s life, I guess.  That’s reality.  I do what I have to do to survive, and they are a business, doing what they have to do to survive.

Back in Feb 2012 the only reason I ate at all (and survived) was because I promised if I ever got over this goddamn eating disorder, I’d make the world a better place for the starving kids of this world.  Never mind whether I’m over my ED or not.  I just don’t have time to wait for the Prophet Elijah.  Fuck, I’m doing it.  I’m doing it.  I’m doing it.