When I was growing up, my parents kept some of their books in a revolving bookshelf that was about four feet high. For much of my childhood I had to reach up above my head to get books from the top shelf. Often, I helped myself to literary goodies. Among these books were scholarly Jewish texts, a copy of the Torah in English, and books about culture and geography. Some were illustrated with photos or drawings, but many weren’t. Another child, I believe a family friend, discovered that inside one of the books – Portnoy’s Complaint by Philip Roth – were a few passages containing many forbidden swear words. “Shh, don’t tell anyone,” she said to me.
When my parents weren’t around, we kids decided we’d have a peek at these delicious pages. I made sure my mother was busy with dishes and scrubbing. She had her back turned, far off in the whirl of the kitchen. I had to be sure those eyes behind her head that she claimed to have were not peering in our direction.
“Okay, coast is clear.”
We scurried to the bookshelf. We knew just where Portnoy’s Complaint was shelved. We knew the page numbers by heart. In fact, eventually, we did this so often that the paperback’s spine developed a tell-tale crease at those pages. No one had to know, though.
“Wow, look at that. What does that word mean?” We whispered these forbidden phrases aloud, giggling under our breaths. “Don’t tell.” As soon as the sound coming from the kitchen changed, we feared our mother might be done with the dishes. We hurried to replace the book where it was always kept.
There was an element of disappointment I felt sometimes. I found that there was nothing different or magical about the passages containing swear words. Reading them didn’t cause me to turn into a frog or a princess, nor make me taller or shorter, nor cause me to become invisible like Frodo, nor was I fortunate enough to get so sick from reading that I could miss school. The experience wasn’t any more enlightening than reading anything else. Why did it hold so much fascination for me, and for the other children too?
Because it was forbidden and withheld from us, we wanted it more. The same held true for the contents of my parents’ liquor cabinet. I wondered if our family dog raided the garbage so often because she was similarly tempted by what was off limits. The more carrots dangled before us kids, especially those goodies with parental warning labels, the more we were tempted to disobey.
The material we learned in Hebrew school held a magical fascination for me. Here, we learned stories. We learned that it mattered little that these stories may not have been historically accurate. In the Torah we read the history of our people, but we were also told that these stories had been passed on from generation to generation over thousands of years. I knew that the meaning of these stories was essential, that we could learn from them, yet verifying every detail wasn’t necessary.
We learned to read the beginning of the Torah, called “In the beginning,” or in Hebrew (written out as it sounds) b’ray-sheet. Later, we learned about Adam and Eve. Our teacher, Mrs. Stiglitz, tended to be strict with us. We had to say the Hebrew perfectly. We children were not called by our usual names, but by the Hebrew equivalents, names such as Chaim or Devorah. My name, Julie, didn’t translate, so I was given the name Yehudith (pronounced Ye-hoo-DEET), the Hebrew equivalent of Judith.
I remember the questions posed by the other students. “What was so bad about the fruit? Was it an apple? Are apples bad for us? Was the fruit not Kosher? Was it poisonous?” My thoughts wandered at those moments, thinking of the scary things I’d heard about “bad people” who put razor blades into apples and then passed them out to unsuspecting children at Halloween. Was that true, or make believe? I tried not to think about it too much.
Nearly half a century later, I found myself in inpatient eating disorders care. Every day we were woken at around six in the morning by night staff who took our vital signs and told us it was time to get weighed. They spoke in hushed whispers, as night staff often do, not wanting to disturb or startle us any more than necessary. Our bathrooms, which we had been locked out of all night, were now briefly unlocked so we could pee and brush our teeth. We were told to hurry as the doors would soon be locked again. Dutifully I went into the bathroom and changed into a johnny for the required weigh-in. I learned that even wearing underwear wasn’t allowed, and we had to remove our socks before stepping on the scale.
The scale was kept right outside the dining room, while the scale’s meter itself, which told our precise weights, was kept inside the dining room by a nurse who guarded it as if it were the Mona Lisa. Thus, we were required to step on it but were not allowed to know what we weighed. We were told it was “against recovery” to know our weight; that knowing it would surely cause a devastating relapse. We were told that outside of the hospital, it was in our best interest not to own a scale. Those that complied and tossed out their scales were praised in eating disorders circles. I wondered if tossing it out was as liberating as some claimed.
Years before, I’d gone without a scale for about a year. It was much like going without an oral thermometer. The scale wasn’t essential to life, but when I was curious or felt I had good reason to know, I found I was inconvenienced by not having the means to find out. I knew it was only a medical measuring tool like any other. In itself, it had no power. It didn’t interact with me, nor did it instruct me in any way.
Much like Portnoy’s complaint, the scale was now forbidden fruit. It was dangled before us patients, always just out of reach. It contained secrets we weren’t supposed to know. Another patient told me the horrors of knowing one’s weight. “It’s triggering,” she said. Then she added, “Ed wants us to disobey the staff. Don’t listen to Ed!”
A few hours after the weigh-in, I had dressed and showered and hurried to our monitored and timed breakfast, where wearing anything with pockets or hoods was forbidden. Apparently, the blanket assumption was that we would steal, sneak, or lie just to avoid eating the food. We were carefully watched and admonished if we disobeyed or complained. Mealtime conversation topics were limited, and often, breakfast was eaten in silence except for the slurping sound of feeding tube pumps. After breakfast, I noticed the long line at the “meds” window. Many of the patients held their bloated bellies in pain while they waited for placebos such as Simethicone.
Later, I received a visit from the doctor who had been assigned to me. In most psych hospitals, the doctor’s concerns were about whether I was depressed and if I felt any better. In the care of eating disorders, there was one thing the doctor cared about: the number on the scale. I was often shocked that these doctors didn’t care about any of the progress I made (or didn’t), but rather, seemed obsessed with my weight. They didn’t seem to be setting a very good example for us folks who were already plagued with thoughts of fat and thin. I knew if my weight had gone up or down by the lecture I received. I learned quickly that there was a goal set for me, determined by insurance. I joked to myself that by the way they were acting, most likely the hospital got paid per patient per pound.
We were nothing but lambs waiting for the slaughter of our souls. Whatever god we had previously had faith in was obliterated. I knew that “Ed,” this acronym for “eating disorder,” was one of the new therapeutic ideas only invented recently as a new way to get us to comply. Many young people developed a terror of Ed, as if it were the snake itself, tempting Eve to eat from the Tree of Knowledge. What was forbidden we now coveted more than ever, this important information about our bodies. Arbitrary lines were drawn between “recovered” and “not recovered.” We might as well have been wearing these labels on our shirts. Many patients branded themselves “in recovery” and even tattooed a symbol for this on their skin when they got out. To me, this was a symbol of blind compliance, so I wanted nothing to do with it.
When I was five years old, I told my neighbor friend that Santa didn’t exist. I consider this to be one of the meanest things I ever did as a child. I might as well have said, “Sorry to smash your shiny illusion.” I felt ashamed when I saw the crushed look on her face.
“You mean–?” She almost looked like she was going to cry.
I replied, “That’s what my parents say. That he’s only make-believe like Superman.” I omitted the part about us Jews not believing in Jesus, saving it for another day. I knew we should never worship a Golden Calf like Santa. My friend stood there, completely silent for a minute. “Let’s go ride our bikes,” I said, trying to smooth it over.
At the eating disorders hospital, I started telling other patients that Ed was made up. This was usually met with hostility. “How dare you? You’re ruining our recovery.” I tried to redeem myself by saying that I was only pointing out that it wasn’t in our best interests to worship the staff nor any of our treaters. They were sheep-handlers who railroaded us to the meals, the “med line,” the groups where we underwent more coercion, and the showers. I believed that deception and force were never the road to health and happiness.
All I wanted was to be taken seriously, to be understood, to be valued for who I was. Like any other patient who tried to get help for serious and life-threatening eating difficulties, I wanted to figure out how to eat reasonably in a way that wasn’t destructive or harmful.
The last day of inpatient eating disorders care for me was during the summer of 2012. I decided that I would leave the patients with a gift, and the one thing I had to give was my writing. My memoir was just about to come out in paperback. No one knew it, but I had added an extra dedication page into the book. I decided that as a gift to my fellow patients, I’d read the page aloud. I asked staff’s permission to do this. I promised it would take less than a minute, so finally they allowed me to read.
My belongings were packed, and as soon as the paperwork was done, I’d be leaving. I stood in the dining room where patients were mostly finished eating. A staff person told the group I was going to read. As I held the paper in front of me, I noticed that no one was paying attention. I told myself, “Here goes.”
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.
Throughout this brief time that I stood and read, the patients continued to clang their silverware and talk amongst themselves about horoscopes and the answers to Trivial Pursuit. Apparently not only had no one listened, but no one even wanted to hear me. The staff hurried me out of the dining room. I stood in the hallway, alone, now having been booted out. I glanced down toward the end of the hallway, and then, back to the locked doors that would soon open and set me free.
Today, I am indeed free. I’m free of worshiping the Golden Calf named “staff.” I’m free of fear of the mythical Ed, invented to manipulate and instill fear in physically weakened and vulnerable patients. I’m free of forced feeding and forced weigh-ins. I learned that the forbidden fruit wasn’t poison. Whether I call it an apple or una manzana, it’s not too bad-tasting, and in itself won’t hurt me. The scale only had power over me if I believed the lie that it was off-limits. I won’t be deceived like that anymore, and today, I could take it or leave it.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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