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