My Journey to Freedom, A Three-Part Story

Julie Greene, MFA
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I have written this story, a story of Exodus to Freedom, a thousand times. I retell it to myself late at night while I lie on my air mattress. In the mornings I may recall these amazing events while running along the beach straight into the sunrise. I walk my dog and tell the story again, hoping passers-by don’t think I’m talking to myself, lest I be called “loco.” But that has never happened. The one aim I had when coming to Uruguay has come true: Not one person here considers me crazy.

 

1. April 2014: Watertown, Massachusetts, USA: “A Walk, but No Freedom”

When I headed out for the National Eating Disorders Association (NEDA) walk early on Sunday morning, I hadn’t expected nearly freezing temperatures. I had only walked a few blocks, and already I was cursing my frozen fingers and toes. I told myself, “I might as well snap them right off, they hurt so much!” I promised myself I’d keep on walking, cold and tired, and make it to this benefit walk. After all, I believed in the cause, didn’t I? I had suffered from an eating disorder for over three decades, hadn’t I?

This year, though, it was was going to be awkward. Last year, 2013, was awkward enough. I asked myself over and over why it was that I was born a rebel kid. I was now in my fifties. In the fourth grade, I was the only one in my class brave enough, or perhaps foolish enough, to stand up against the teacher and protest homework.

The 2013 NEDA walk was Boston’s first. As soon as I heard word about it, I phoned MEDA, the Multi-Service Eating Disorders Association, who was partnered with NEDA, and asked why we weren’t marching in Boston’s streets on a weekday, when the state legislature was in session. Why on a weekend and isolated at this suburban high school track, fenced in where we had no visibility except to ourselves? Why couldn’t we make a public statement about eating disorders? We were a population that already had had our voices taken away. We needed to reclaim our voices, didn’t we? I called both NEDA and MEDA, and both ignored me. I called a second and third time. I think they got tired of my calls.

I had a sign made up at Staples the night before the walk. I asked them to make the sign with large, easy-to-read lettering. For pennies more, I had Staples laminate the sign. I recall the salesperson gave me a funny look. I told her something about my past as a hitch-hiker. She said she thought my sign was “cool.” I rambled on, keeping her laughing, then left. If only she knew just how much personal history was behind the printed words on the sign.

If only she knew just how many times I’d been told that no one wanted to hear what I had to say. That the doctor had only one minute to talk to me. That my time was up. That my words weren’t important. That the staff’s agenda was more important than the second half of my sentence. That whatever I was about to say would trigger everyone else in the room, no matter what it was, so I wasn’t allowed to say it.

I had been taught in school, before most of those staff had been born, that our country had a Constitution and that these rights were self-evident, meaning that all humans regardless of where they lived were born having these rights. Why did my “mental patient” status mean I was stripped of self-evident human rights? Was I no longer human?

The words on the sign were, “Never, ever shut up.” I had my name and my dog’s name ‘Puzzle’ on the bottom. These words had become my motto over the past year.

I came to the 2013 NEDA walk with Puzzle and my sign. The organizers knew that Puzzle had papers as my service animal, but they didn’t allow me inside the track. I was told to bring Puzzle home and then return, but I refused to do this. I felt put off. Their tone sounded familiar. They put their hands on their hips. Why was this happening? Why were these young women who worked for this charity treating me like I was a kid in grade school? They were half my age!

Their tone resembled the condescending tone of hospital staff I remembered so well. Why was the tone of mental health professionals rarely age-appropriate? I was over half a century old and maybe they needed a reminder. I walked up to one of these young women and asked, “Do you remember the day Karen Carpenter died? Where were you?” It was like I was asking her if she remembered the moon walk in 1969 or the shooting of JFK.

The young woman shook her head. Her shiny long hair bounced. I thought wryly, that healthy look. She replied, “No, I don’t know what you are talking about.” She turned and walked away. I wondered if she assumed I was delusional, just like the those people in “treatment.” Karen Carpenter was a famous singer and drummer I had loved when I was a child. She and her brother formed a group called The Carpenters. Karen died of anorexia in 1983.

I solved the problem of being unwelcome at the walk by standing outside the track, holding my sign with my motto printed on it, the motto I loved so much: “Never, ever shut up.” I stood right by the outhouses. On one hand, I asked myself, “Am I only good for the toilet bowl?” On the other hand, I felt immensely proud.

People who were attending the walk approached me while I stood outside. They asked about my sign. I enjoyed telling the story, as I often do, of how I learned of Karen Carpenter’s death. I was inpatient at the time and saw the news on TV. I was twenty-five years old. I had begun to cry while the announcer described what had happened. I then begged and pleaded with the doctors to please listen to me. “Yes, you can die of this!” But the doctors continued to poke fun at me and trivialize what I was saying. The hospital staff, at the time, barely acknowledged that I had an eating disorder. This became my life for the next three decades. In fact, it took three decades before I learned that I wasn’t the only one who had had to work my way through the mental health system and buy into all their other psychobabble jargon (even though it didn’t quite fit), otherwise no one cared at all.

I was so proud of myself at that 2013 walk. Afterward, I continued to hold up that sign while Puzzle and I trekked home to Watertown. I crossed over the Charles River, then ran into a couple I knew from church. I told them about my experience. They told me, “Good work, Julie.” Then, I felt even prouder.

That was the beginning of April, 2013. Shortly afterward, a couple of angry kids bombed the Boston Marathon with a pot of nails. Later, one kid was dead and the other fled to the town where I lived, Watertown. The kid hid in a boat while the town turned into a war zone. I stayed inside my apartment with Puzzle. I heard the helicopters flying overhead and thought, “I haven’t eaten for days. No one even cares about me anymore. I could slip away and no one would notice.” I was more voiceless than ever.

Voicelessness and social rejection take their toll on a person. The following summer, a combination of severe self-starvation and twelve years of taking lithium in the past nearly killed me. Afterward, I assumed I’d be welcomed back into my community. Maybe I’d even get an apology. However, this turned out to be a false hope. In fact, I was even more silenced, silenced by impending Forced Care, and by institutions that didn’t want whistleblowers like me writing about the wrongs I had witnessed over the years. I had to do something. I couldn’t put my finger on what that would be. Not yet.

I found the online publication, Mad In America, the following September. I was invited to participate in the protests to free Justina Pelletier. I brought a copy of my usual protest sign, minus my name, to the protests. That sign, and the words, “Never, ever shut up,” got photographed and ended up in the paper. I didn’t.

To me, the motto, “Never, ever shut up,” originally meant something about eating disorders and the importance of gaining a voice in the world. Gradually, that motto had taken on a greater meaning in my life. I wanted people to know that every single person’s suffering mattered.

Now, it was April 2014 and this year’s NEDA walk was certainly going to be different. I looked back on all I’d been through. Geez, it was so darned freezing out!

Participants in the walk were charged a registration fee. Dog were allowed, for an additional fee. I’d never heard of any organization charging sufferers to walk in their own benefit walk. Again, this walk was sheltered from public view. I finally arrived. On first glance, it looked about the same as last year’s walk, but I estimated that attendance was down. I found the music to be distasteful and noisy. I was most dismayed when I heard one of the speakers, a former sufferer who told a story of how she recovered because she’d been forced into “care” by her parents. She told us, tearfully, that she had cried every day and begged her parents on the phone to take her home. Her parents refused. What was the real message here? That parents should force their kids into lockup joints against their will, removing them from school and the familiarity of their friends for an entire year? That forced care was the only way to “recovery”?

I was disgusted. I approached a table where one of the organizers stood handing out pamphlets on eating disorders. I told her, “I’d like to start up a place where people can come who are suffering. A free place. It’s my dream. Only I hesitate to call it a ‘treatment center.’ I don’t believe in forced care or locked doors.”

The woman looked at me. I recognized that ole familiar look of disdain. I guess she wasn’t impressed. Had I not donated enough money? Were my clothes too shabby-looking for her? Maybe it was the crooked teeth. That’s usually a dead giveaway that you live in poverty. She shook her head at me. I knew she thought I was completely out of my head. Like I was worthless, and had no chance in life.

After the walk, I wrote notes on my experiences that day. When I was finished with my notes, I recorded a radio broadcast, a narration of my writing. I uploaded the broadcast the following day. While I sat at my desk, I asked myself if anyone would ever tune in. I had worked so hard, and my hard work was getting nowhere. My neighbor’s TV blasted away as usual. I was tired of hearing that “Wheel of Fortune” turning all day, and was dying for my own fortune to turn. What did I have but a only a drop of hope remaining?

 

 2. Six weeks later: “Runaway on the Runway”

“Julie, I’m worried. Your feet are so swollen. Are those stretch marks on your ankles?”

“Yeah. That’s what hurts so much. The skin is to the point of breaking apart. Whenever I stand up, or even sit, the fluid goes to a lower place in my body, so my ankles swell all over again. It’s from the kidney disease.”

“Okay, then, lie down on my bed and I’ll take care of everything.”

“Do you mind if Puzzle lies with me?”

“Oh for heaven’s sake, of course not! I love Puzzle too!”

I didn’t expect to sleep. I tried to instruct my friend what to take and what to toss. She was the relocation expert. She was far more adept at packing than I was. She was the experienced escape artist. She told me not to worry.

I told her I was concerned because I knew she had to work the next day. She said, “Screw work. I’m quitting soon, anyway.” She picked up one of my knapsacks I was bringing, saying, “Julie, this isn’t going. It’s too bulky. Do you see what I’m saying? It takes up too much space.”

“But–”

“No buts, Julie. Do you know just how many of these knapsacks you have? You don’t need that many.”

She carefully rolled up even my underwear, making sure it took up so little space that as much fit into my luggage as possibly could. Finally, we squeezed everything into one less bag than I’d had before. I explained the weight limit and asked if we could weigh the bags. My friend said she didn’t own a bathroom scale.

I said, “What?!!! No scale?”

I looked back over my years of forced weigh-ins at my PCP’s office, realizing I sure could use my bathroom scale right now. My scale was back at my apartment in Watertown, that place I would never see again. I wondered how much money, total, my PCP had collected from my insurance company just to weigh me. Those weigh-in dramas now made me laugh. I would never have to go through that again.

My friend and I decided it would be best if I took a cab from her apartment to the airport. Cabbies knew the best, most efficient routes, and they wouldn’t mess up and take me to the wrong gate.

A half hour later, the cabbie still hadn’t shown up. “I told him the address,” my friend said. “How on earth could he get lost? Could the dispatcher have mixed up the town? I’m going to call again. Just lie down until he arrives.”

My plane took off from Logan Airport at 5:45AM. I watched the sun rise over the earth outside the airplane window. Boston was disappearing. Shrinking while I watched. Meanwhile, the suburb of Watertown, Massachusetts, and all the bad things that had happened to me there were fading away fast. Most of the townspeople were still asleep. No one had any clue I had slipped away during the night. I had a notebook with me. I still own that notebook, where I wrote the words, “Goodbye, forever, Boston.” I wrote some swear words, too. Puzzle slept peacefully for the entire plane ride. I had to wake her up and let her know that we had arrived safely in Miami.

We stayed at a pet-friendly hotel for about 24 hours while I stayed in a reclined position most of the time, tending to the swelling in my feet. I told Puzzle to do what she knew best. She went right to my swollen feet and lay on top of them. Most would assume this would hurt me. Instead, she helped reduce the swelling faster. I have no explanation as to why this works.

Here at this hotel, travelers passed through the gateway to the Caribbean and South America, Miami International Airport. They arrived, stayed overnight, then left. The hotel staff didn’t know our stories. They wanted our stay to be comfortable and easy for us. I knew they were well aware that for many, our stay was only one link of a chain of events that comprised the most radical life transition we’d ever make.

I knew it would be best to hide just how scared I was. I’d heard people could be stopped at the various airports, even detained. I hadn’t committed a crime. I was escaping my own medical records, my diagnosis, my rotten reputation, and a bunch of lies and rumors. My intention was to start anew, and in doing so, save my own life.

 

 3. January 2015: Canelones Departmento, Uruguay: “Rebuilding my life, reconstruyendo mi vida”

I was in a hurry to meet my friends this morning. I had assured my writer friend that I would be at our usual meeting place at 9:15. He had e-mailed me a chapter of the book he was writing, with questions for me. Already, it was nearly 9 and still, I had to see to it that I got Puzzle fed and I brought everything with me that I’d need. Pencils, eraser, paper. A bottle of water. My wallet. My keys. Should I plan on rain, or not? There wasn’t time to look it up online. Doing that would delay me even more.

I stepped outside. Wow, our Sud American sun was the most amazing thing I’d ever experienced. I took a second to look to the sky, taking it all in. Then, I decided to walk as fast as I could, knowing I was running late. I passed by a number of people gathered at the bus stop, some on their way to work. By now, I was well accustomed to hearing conversation all around me in español. This wasn’t my language to begin with. It was like I was deaf because I had learned to dim out the talk around me to background chatter unless it was directed at me. I’d only know this when I heard a very distinct, “Señora!” with a clear gesture. Many find mi nombre too confusing to pronounce.

I passed by a bakery near where the main drag, Avenida General Artigas, met the highway, or Interbalnearia. I heard a voice calling me, “Julie! Julie!” I turned and looked. Naw, I imagined that. I kept walking. The person called again.
I saw my friend, a cup of café in his hand. “You didn’t recognize me, did you?” I could barely make out his grin, as he was silhouetted in the morning sun. All at once, I felt safe and protected.

I answered, “I told you, I don’t see all that well. I had no clue it was you at first. Good to see you as usual. You headed over there?”

He answered, “Yes, I am. Gimme a sec. I’ll meet up with you all.”

I crossed a busy street then passed by a few more shops until I came to our spot. Many restaurants in Uruguay offer outdoor seating, and this one is no exception.

My friend from a couple of towns over had already arrived. I saw him from a distance seated at our usual table, rolling a cigarette. I called out, “Hola!” as I approached. I sat down.

There’s no taboo topic here, nothing too great nor too small. We discuss everything from alcoholism to physics to the price of gold. We discuss things to come, our various projects and dreams, and all we hope to accomplish. Some are working on sustainability. Others are concerned about world politics and economics or the changing face of health care. I help people out on the tech end and with writing. I find I am awfully busy these days.

I’m not sure there’s a common denominator between us. Most of us, though, were so outspoken in our various fields back in the USA that we ended up blacklisted. Those of us who refused to shut up, who continued to challenge the status quo ended up victims of scandals or cover-ups. We were lucky we got out when we did.

I brought the sign with me that I carried to two NEDA walks, that sign that says, “Never, ever shut up.” I carried it in one of my suitcases. It’s hidden in my cabinet now. I went and checked last week to make sure it was still there. I felt comforted the moment I touched the smooth, glossy surface. That was all I needed. I closed the cabinet and haven’t looked at the sign since.

Every time I step outside, I laugh and ask myself if I’ll ever get accustomed to the way the sun peeks over at me at such a crazy angle. Why is the ocean over there? I celebrated my birthday a few weeks ago this January. It was 80 degrees out. Fifty-seven years ago, I was born in a blinding snowstorm in the USA. I feel lucky to be alive today.

We don’t have a head count here of the number of Expats. Uruguay’s economy relies heavily on tourism. This makes it nearly impossible for either government to know how many USA citizens are present as the number is in constant flux. Immigration regulations depend upon one’s citizenship and several other factors, and also can change.

It didn’t take long before I stopped calling myself an Expat, as I felt uncomfortable with the term. Didn’t that mean an old, rich, fat guy wearing a Yankees shirt and holding a fishing pole? Wasn’t “Expat” just another word for tax evader in the eyes of so many people? This image is purely myth, just like the images we know so well of the crazy dude with fangs who “goes after” people. In my retelling of the story, I rename myself “refugee.”

I’d say the Expat community is tight-knit. Many others have past lives that are as dark as mine, but they aren’t psychiatric survivors. Many were activists who spoke out, as I had, a bit too loudly. Of the psych survivors that may exist here, why should any confess to it? It is an individual choice, one that must be considered carefully.

I see that a lot of folks back in USA who either leave the mental health system, or want to leave, have so little hope. They feel that the damages done by the System were so great, either physical damage or trauma, and because of these damages, they will never be the same again. That had been my feeling, too. I was afraid I’d be angry forever, or that there were too many losses, or that no one would ever love me. I had only a sliver of hope left.

A sliver of hope is all you need. I think of the story of Chanukah. My own ancestors discovered the Holy Temple had been destroyed. While picking up the wreckage before them, they found they had only one drop of oil left. This drop was their only hope. But what happened next? Whether this story is true or not, it’s still a wonderful story of a miracle. Believe in possibility, because all we know is that a Great Miracle Happened There, and essence of this story is still alive today.

I have a new motto now, “Believe in possibility.” I think in terms of rebuilding lives. I am thankful that I am now doing just that. I do everything I can to help others. I ask anyone who is reading this now to believe that this possibility exists.

I recall the day of my arrival in my wonderful new home, Uruguay. Our airport in Carasco is so small that the lines at customs and immigration don’t take long at all. I waited at the baggage claim. Everything had come through except for Puzzle, inside her carrier. Finally, a man tapped my shoulder and said something that sounded like a bunch of nonsense words. Now, of course, I know those español words well. He was inquiring about a little white dog.

“Puzzle!”

Outside, a couple of kind señors helped me with my bags. I looked up at our sun. Then, to our amazing earth. It’s red.

Had no one seen me, at that moment, I would have done what my ancestors quite possibly might have done upon their arrival at the Statue of Liberty. My great-grandparents anticipated the coming of the Nazis and had fled eastern Europe. I can only imagine what they felt upon stepping on New York soil for the first time.

The word for freedom in español is libertad.

I remember looking down at the earth, and then, up at the sky. There was one thing I would have done at that moment, had I been alone. I would have picked up a clump of that red earth, kissed it, and then held it to my heart. In fact, I still want to do this every day. Gracias. Free at last.

* * *

There are two sound files mentioned in this piece. These can be accessed at the following links:

http://marathon.neu.edu/items/show/8503

http://www.spreaker.com/user/juliemadblogger/reflections-on-the-2014-neda-walk

18 COMMENTS

  1. Julie,
    What do you feel has given you the patience and strength…

    Spider silk
    Thin
    Strong as steel

    To continue to walk through this, year after year? I’m sorry that so many members of my generation don’t appreciate the great value of long experience. Please know that some of value it beyond price.

  2. Absolutely beautiful! I’d read your memoir, you are such an engaging writer, really delightful to read your courageous story told with such light.

    Your story is an illuminating example that while it may be no easy walk to freedom, not only is it attainable, it is our inalienable birthright. You encourage people to trust their process and keep moving forward. With each step, we create opportunities for unimaginable turnarounds.

    Really inspiring, Julie, keep it up!

  3. Hi Julie & Puzzle,
    Though it felt like Spring had already arrived when I called you early this week, our 3 feet of snow melting away with 3 days of temps in the high 50’s, I still got chills –knowing what you endured here in Watertown, MA, regretting that I did not meet you during the past 20 years I have lived here. What if you had made an appearance when I began to question and challenge the *mal* treatment of kids labeled with any one of the DSM Eating Disorders diagnoses on Bader 5 (adolescent psych ward at Boston Children’s Hospital)? I imagine both of us would have appreciated what we experience now– speaking the same language, commiserating on many fronts– from suffering the disdain of our peers for *not shutting up*, to finding humor amidst agony and absurdity. But, we did not find each other, even though we were both out and about the lovely streets of Watertown. Walking off our angst and daydreaming, we may have passed each other hundreds of times. WE finally meet via the email and computer phone technology- connected by a mutual friend in Alaska. Better late than never—?

    As happy as I am for your having achieved peace of mind and freedom via your great escape, I have to comment here with regard to the fact that you had to LEAVE THE COUNTRY to achieve what our constitution says belongs to every single one of us. How CRAZY is that?

    Hi ho,
    Katie

    My comments, or rather, How Crazy is THIS?

    For those who may not quite understand what is at stake for refusing to shut up about the TORTURE that is inflicted on people with eating disorders, I offer a capsulized description of my learning curve on the topic.

    What got me in the most hot water as an outspoken critic of many of the practices on Bader? My flagrant criticism of the Eating Disorder Treatment Protocol.

    Disciplinary action was initiated against me by the Program Director on Bader immediately after:
    I emailed her –re: my concerns about a physical restraint that was called medically necessary (not reported to Department of Mental Health), but was actually inappropriate and illegal. Here’s the basic story:

    A patient with the diagnosis Anorexia Nervosa who was at her *ideal body weight*, was medically stable per blood pressure, pulse measurements throughout this particular day, had refused dinner, refused to drink Ensure replacement, refused to allow nurses to insert a nasogastric tube for Ensure feeding–. She was put in 4 point restraints on a stretcher– in the hallway and full view of other patients, with the help of 2 security guards. The NG tube was *dropped*. Ensure feeding and psych drugs were forced upon her via the tube, while restrained. This occurred on the shift prior to mine– documented and reported by the Charge RN at change of shift. There was no doubt this teen , with whom I had good rapport, was traumatized– and that the restraint violated DMH guidelines, based on Massachusetts General Law–and BCH nursing policies for mechanical restraints. I documented my encounter/assessment of the patient, reiterated the violations piece . Ended with “We can do better.” and hit SEND, propelling the *fatal* email to the Program Director, Medical director and the two young psychiatrists–

    Would anyone call this *Unprofessional Conduct*??

    Here is a quote from my PIN- June 9. 2009

    “There is a pattern of challenging the clinical care decisions that potentially interferes with the patients receiving the care they require. A number of your nursing colleagues have shared their concerns about your behavior and that their input is not listened to when they try to discuss this with you. They have communicated that they feel intimidated by you and found you to be inflexible…All attending MDs and Team Leaders on Bader 5 have shared their concerns with the Director about your pattern of questioning the care plan and undermining care by challenging the plan or not caring it out.”

    In other words, “You had better shut up!” (if you want to keep your job)-

    I did not shut up– and went on to make a much longer and more detailed written and verbal complaint to Massachusetts Department of Mental Health, supported by 5 other nurses. I took this step when it became clear that the response to my SERIOUS CONCERNS was an ultimatum-.

    UNTIL, I started rattling the *Gilded Cage* that imprisoned, demeaned and tortured patients diagnosed with Eating Disorders — the Bader 5 Eating Disorder Protocol ( which includes RESTRAINT for noncompliance with meal plan); until I began to refer to treatment of AN on Bader 5 as the “Hansel and Gretel Eating Disorder protocol* my questioning and challenging of care plans was pretty much ignored–

    WHAT IS IT ABOUT EATING DISORDERS?? Something sacred to the psychiatry department at Boston Children’s Hospital?

    Psychiatrist Hilde Bruch writes in her book “The Golden Cage”- the Enigma of Anorexia Nervosa (1978) :” Few conditions evoke such severe emotional reactions as voluntary and defiant food refusal…”

    The same can be said for any unusual behavior around eating. What I have witnessed attests to the validity of severe emotional reactions that evoked what can only be called sadistic behavior from psychiatrists and mental health professionals towards kids struggling with their fearsome behaviors around food and eating.

    So–

    Julie, you left the country for reasons I understand, but for some mysterious reason I cannot find the words to express, or explain this paradox. At the same time, I know the puzzle cannot be solved until the secrets are all revealed.

    BTW, Puzzle is a perfect name for your adorable furry companion.
    ~K

  4. I am deeply moved by this, even more so now that I have met you personally, Julie. Your motto is spot on..Never, EVER shut up.

    You are brave and courageous. You, Julie, are what I and ever survivor should aspire to be. I am a young man of 33 years of age, and I look up to women and men like yourself for guidance and motivation. I look forward to working with you and others in the next few weeks, months, and years. I’m glad to call you friend now.