Mira's Story

     My name is Mira. I’m 19 years old. I love black-and-white cats and the sharp smell of oil paint mixed with turpentine. I listen to Fleetwood Mac records and wander around art museums to sketch, charcoal covering my fingertips. I'm a terrible singer, but I belt out concertos in the shower. I've spent long nights scribbling down my thoughts, frantic to immortalize whatever part of my brain is churning in the dark. I never used to know what the inside of an ambulance looked like, much less ten. I used to think you receive care at one hospital, not nine in one year, and definitely not over three years. I never used to know what bone density tests were, or EKGs, or orthostatics. I never used to know how an IV felt, or a feeding tube when it was inserted up your nose and into your stomach. I never used to know the pain you felt when your liver was on the brink of failure. 

     I used to think I knew pain. I don’t know what to think anymore.  

 

     On February 12th, 2019, I walked out into a blizzard at night and never came home. I spent hours in the cold, snow crystallizing in my hair. I hummed to myself and shivered until I found a bus to shelter in. I took it to nowhere in particular. I wanted to get lost. I wanted a fresh start. The white of the world shone at me, the blanket of snow telling me that it would be okay. But snow only covers up the pre-existing dead leaves, and back then, in my 14 years of life, I'd never had a spring. I knew it existed, but every year, my leaves fell and fell, and none of them grew back. They say that when you're born in a burning house, you think the whole world is on fire. But I was desperately tapping on the window, looking out into the world. I knew that nothing else was on fire but the house I was trapped in, and myself. 

     At last, I came to a CVS, lit up and warm inside. There, I took a bottle of Extra Strength Tylenol with hot water from the sink in the staff bathroom. My fingers bled pink. I sat down in the store, suddenly afraid to be alone. I didn't want to die. But I was okay. Until I wasn’t. Pill shards came up, burning my throat and my nose. My vomit was red. I called my mom. She called the police. A store worker locked me in the bathroom where I had previously overdosed until the police came. I was strapped onto a stretcher and bundled up because I was shaking. Other customers crowded around it anxiously, watching the show. I was freezing, but the doctors said it was shock. I vaguely remember asking the EMTs if they could turn the ambulance siren off.

     We pulled up to the city's hospital. I was told to drink activated charcoal and given five IVs. I walked to the bathroom to pee out the fluids until I couldn’t stand anymore. That night was blurry and unfocused. My insides felt as if every organ was set on fire. I wanted the pain to dissipate –– I just wanted to go to sleep. 

     Hours later, I was transferred to Boston Medical Center because the doctors thought I needed a liver transplant. I fell asleep screaming in my bed in the pediatric ICU. "I take it back," I told the world, "I don't want to die anymore."And somehow, I made it through.

     The next couple of mornings, the pain ebbed away. I watched TV and drank vegetable broth and went on walks with women who bathed me with washcloths. My liver began making proteins again. After three days, I didn’t need IVs anymore. Doctors began talking about psychiatric hospitals I could go to. There weren’t many that would accept me because of my dual diagnoses –– suicidal ideation and an eating disorder. Later I realized this meant there weren’t enough hospitals equipped to restrain and tube me. Finally, the doctors admitted that there weren’t any good options. I said I would stay in the ICU. My parents pulled a few strings and found me a bed at the adolescent unit at Franciscan Children's Hospital in Boston.

   

     I came in on a long weekend, so I didn’t meet my social worker or psychiatrist until Tuesday. For two weeks, I cried every night. My stomach betrayed me every time I swallowed pills. I was quickly put on new antidepressants and when it was clear I wasn't any less depressed, I was just prescribed more. Years later I would learn that I had Bipolar Disorder II and that the class of antidepressants they'd unleashed upon me (SSRIs) just made everything worse. My eating quickly declined because of the pain in my gut, pain lingering both from my attempt and the never-ending dosage increases of my new medications. But as I lost weight rapidly, I quickly fell into my addiction to starvation. 

     The doctors weren’t happy. I was losing too much weight. Because I had a history of purging, I was put on bathroom restrictions and ordered to count out loud to staff while I was using the toilet. My panic attacks came back, but worse. I would scream and gasp because my brain told me I couldn’t breathe. At first, the staff gave me cold washcloths. Frozen oranges. Then they grew frustrated. They looked the other way when they heard my hyperventilating beginning. 

     My therapist stopped meeting with me and I didn’t know why, much less how to help myself. Standing now meant the world spinning around me. My body began growing lanugo, fine hairs to keep me warm. I went to each activity group after group, making collages with no scissors.

     Then one day, my team held a conference. They informed me that if I wasn't able to completely turn my eating around within the next two days, I would be sent to an eating disorder center. I tried to explain that I'd previously had a history with an eating disorder partial program, which only made my eating disorder and suicidality worse. They told me that that was my eating disorder talking. I told them that I was talking. But who was I to talk? I was a 14-year-old girl in a mental hospital. 

    The meeting quickly went sideways. I ran back into my room crying and turned over my desk. I hid behind it, pleading for just an ounce of privacy and power over my life. Staff came running. I remember holding my hands out, screaming for them not to touch me. But I felt a man lift me up by each armpit and drag me down the hall kicking. Another staff placed his hands on my waist and pushed me into a small room at the back of the unit. I was in disbelief. They had locked me by myself, especially while I was emotionally dysregulated, and this was the most dangerous thing they could do. I banged on the door, crying and begging them to let me out. They didn’t. I promised to go straight to bed, just "please don’t leave me by myself." They sat there and watched from the Plexiglas in the door. All I could feel was laughing eyes stroking my skin and annoyed sighs slipping from upturned lips.

     Time escaped reality. It might have been one hour I was in there, it might have been five. But I was jolted up when they unlocked the door, and light finally filtered into the tiny seclusion room. My vitals were checked and they unlocked the door to my bedroom. I fell asleep. 

     In the morning, I stopped eating altogether. Things had been done to me, things that I had only seen in movies, and the floodgates had opened. I was crazy, and Franciscan’s wasn't equipped to help "crazy" people like me. The tunnel in my brain narrowed. Even an eating disorder hospital would be better. I had to get out. 

     Days passed while I rode the euphoria of starvation. My vital signs were taken, first lying, then sitting, then standing. They were called orthostatics. A week went by. Finally, my psychiatrist came to talk to me. “Your ambulance is here,” she announced.

I asked if kids like me ever came back to Franciscan’s.

     “Not usually,” she said. 

 

     I rode in the ambulance once more, chatting with the EMTs as they showed me pictures of their dogs on their phones. While they carried my stretcher into the Boston Children’s ER, one of them looked at me and said, “You’re so light! You weigh nothing!” 

     After a couple of hours, a bed was assigned to me in a medical unit called 7 West. The security guard that had been watching me gave me the nickname "MG" and taught me how to play Uno in stacks. Right before his shift ended, he took my hand in his and squeezed it.

     “Eat for me, MG,” he said. 

     The first day I did not. At lunchtime, I was tubed for the very first time. I felt the cold plastic snake down my nose into my throat and finally reach my stomach. My eyes began to water, but I told the nurses it was just a reflex. They said they understood. Then the next day, I ate lunch for the security guard. I was tubed breakfast and dinner.

     I wish that I could’ve said it was okay. That all the nurses were kind. Most were. I asked them if I could leave my room on a wheelchair ride. They said maybe if I ate more. 

     I was trying, but the terminology was heartless, and the protocols, were even more so. 30 minutes to eat every meal, 15 minutes to drink the liquid replacement, and if it wasn’t completed, however many minutes it took to snake a tube down my nostril into my stomach and pump nutrients in. Three meals, two snacks. And after each meal I failed, they took it out. So they could put it back in. So I could "learn my lesson." 

     It felt physically impossible; my meal plan was 2,500 to 3,500 calories a day and I hadn’t eaten anything in a week. I was bloated to the point of extreme pain so I was loaded up on Prilosec, a 14-day course digestion med which I took religiously for the majority of my entire 49 days there. I was given Zyprexa at the youngest legal age of 14, which was a benzodiazepine that aided weight gain.

     My life had been an endless cycle of eating or tubing. I was forced to wake in the wee hours of the morning for blood draws every single day. I memorized the TV programs. My vital signs were taken every two hours; if they were good, I could shower in front of security guards, but if they weren’t, I’d sit in bed sweaty and pee in a commode. 

     Two weeks passed before I tried to run. After two weeks in that hospital room, I needed the pain of it all, physically and emotionally, to stop. I could barely walk, but adrenaline pushed me down three flights of stairs before I was caught by security. Two became permanently stationed inside my room. 

 

     The next day, I pulled out my tube. The nurses put it back in. My nose bled. I pulled it out again, and the clear plastic gleamed pink. The nurses led my mother out of my room. They put it back in. I pulled it out. Suddenly, security was called, "Code Yellow" blaring over walkie-talkies. 

     That was my first restraint, the first out of dozens. Security guards filed into my room and I clawed at them as they pushed me into the bed. They held my every joint and told me it would be over if I stopped resisting.

     The men strapped my wrists and ankles down to the bed, spread with my arms and legs apart like a starfish. The nurses got a clean tube and put it in. Only then did I stop screaming. I felt the cold plastic in my trachea and struggled for breath. I tried to say something, but all I could do was gag. I tried to signal I was choking, but my hands were tied down. Finally, a nurse took it out and I began to cry. I told them I had choked.

     "No you didn't," one insisted. "It was just because you were yelling."

     Another offered me sedatives that I refused to take. My hospital gown was pulled up and my thigh was shot with medicine. The TV was still playing. I fell asleep tied to the bed. 

     When I woke up, my hands and legs were free, but the restraints were still attached to my bed. I begged my security guard to take them off. He said they would reconsider in a day.

     For days I slept in a bed with Velcro cuffs attached to it. I screamed for my parents at night, but any time I began to "act up," nurses sent them two floors down, so as not to hear my pleading. My wrists were rubbed raw. 

     How did hospitals become my prison? How much longer would I spend in this white room? How many days until both my nostrils became bruised and a tube wouldn’t fit in either of them?  

     I was restrained again and again and again. My hospital curtains were taken down and black paper was plastered onto my window so security could restrain me in peace. I watched as every hour, the light of the outside world dwindled. Finally, the man putting it up finished. I subsided into half-darkness. 

     My legs hurt from laying in bed for so long; I slept with compression cuffs to keep my blood circulation normal. I stopped drawing and writing poetry. I folded a thousand papers and wished in every single crease to leave that room. 

     After two more weeks, I was medically cleared. My vitals were okay. My weight was okay. But no facility had the means to treat me. Eating disorder hospitals couldn’t cope with my suicidal ideation––they couldn’t restrain me. And psychiatric hospitals couldn’t tube me, if necessary. 

     My parents and treatment team searched the entire country. The only two places that would take me were an eating disorder treatment center in California, or Bader 5, Boston Children’s psychiatric unit, but they were both full.

     I missed the sky. I started praying. I folded crane after crane. They piled up in my room like a snowstorm of pattern and color. 

​

  

     Two more weeks passed, making it a total of 6 weeks in that one room. By then, I'd fallen into a routine. I was overly invested in TLC shows on the TV, I had my favorites in the kid's Spring Baking Championship, I folded origami paper to music on my mother's phone, I made slime with the Child Care Specialist... It wasn't all bad. My restraints had become less frequent and I knew all the nurses by name. I knew their shifts too, and my favorites would come 

 

And then finally, news came. A spot in Bader had opened for me, and I could shift units in a week! I was ecstatic to leave––it would be a new start. Nothing could rival those 49 days in that one room, forcibly confined to the bed. I figured I'd hit rock bottom and, of course, it can only go up from there. 

 

     The morning I was discharged, I was beaming. Nurses lined up in the halls and sent me off with bubbles. I scattered origami flowers down the hallways.

​

But during my intake meeting, I had a panic attack. It was my first time out of one room in seven weeks –– I was utterly overstimulated. I barricaded my room, needing to be alone, needing to breathe. I couldn't sit in that intake room and hear about the protocols I had suffered from once more. The meal percentages and tubing policies. The bathroom restrictions and strip searches and "qualifications" for restraint.

I ran to my room, pushed my bed against the door, and huddled under my desk. It was obvious I needed help. I just wanted someone to talk to. But the Bader staff didn’t understand de-escalation. They called for security. I was tied to a restraint bed. 

Staff and security pushed me into the “Quiet Room”. There, seven guards flipped me over and pulled down the skirt with flowers I had chosen for my first day there. I thought I was going to be raped. But instead, a nurse shot me with medicine. Then they turned me onto my back and left me alone, Velcroed to the bed again. A nurse turned off the lights in the room. I screamed, begging her to turn them back on and for them to let me go. I promised I would be safe. 

"When you calm down,” she said, her annoyed face illuminated from the small observation window into my dark room. 

“I’m calm,” I told her. “Please."

"When you stop crying, I’ll turn on the lights.” 

I couldn’t. Couldn’t breathe, couldn’t stop crying. Couldn’t stop the feeling of hands all over me. There was nowhere to go but down.

 

She waited for the tears to stop. Hours later, she let me go. It was my longest restraint.

My room was stripped. My therapist forgot to meet with me for weeks. I only had a mattress and origami paper. My birthday came and went. I rolled around the unit in a wheelchair while presents were confiscated. I was fifteen. 

​

Restraints weekly. I was the only kid who had them that often. And I wasn’t allowed to talk about it. How could I end the cycle that I started when I wasn't allowed to utter the word “restraint"?

What happened was forgotten about until the next time security was called. Sometimes, I knew those security guards from those seven weeks before Bader. They would stroke my head, my hand, and say hi. Those were always the fastest restraints. I would calm almost immediately. They were close to me, I had talked to them for hours. They were the ones that brought me tiny paper cranes from the chapel and made me laugh as I got tubed. They were the ones who let me do yoga, kindly averted their eyes as they watched me shower. One even bought me a book, “Be Brave Little One”. These security guards made me brave. Calm. Okay.

​

I was okay. I went outside for the first time in ten weeks. I wrote endless poetry about the air, the grass, the sky. And then, after a week, I slipped up. Recovery is never linear. I hurried over to a staff member for support, crying out of shame. She refused to talk to me.

“I will, once you get a hold of yourself,” she said. “Your crying is triggering everybody else.” 

I was tired of support being conditional. Of being told: “once you're calm,” or “as soon as you stop crying”. I pleaded with her to talk to me, again and again.

"Act your age,” she told me. 

To this day, I still remember her face hovering over me as Iay in restraints.

“What did I ever do to you?” She hissed. 

 

It was "fight," "flight," or "freeze". I tried "flight," but in a hospital, there’s nowhere to run to. "Fight" had just wore me down. My life froze. 

I had been at Bader for eight weeks when the average was one to two. That meant a total of around five months, just at Boston Children’s. I was the "noncompliant" patient whose recovery was deemed impossible. Boston Children's discharged me to the highest level of care in MA, the state-run long-term hospital called Worcester Recovery Center. 

​

The recovery center (which the residents deemed CCU), was unlike any other hospital I had been to. The kids there stayed for anywhere from three months up to two years. Because it was long-term, staff and kids got to know each other. There was a school there, with teachers for each subject. You were allowed outside if you asked. I received therapy for hours every day. 

Most of all, it was a fresh start that I so desperately needed. I don't attribute my whole recovery to that state hospital, but the new setting allowed me to break my endless cycle of restraints. I was able to talk about restraints freely with other patients and in groups. Slowly, I began to process the trauma my hospitalizations had induced.

Since CCU was the highest level of care, the program was different in that it was not desperate to prove itself. At Bader and Franciscan’s, if I brought up human rights issues and feedback, it was brushed aside and laughed about. They were desperate to keep up a reputation, whereas Worcester didn’t have one. Maybe it was because of this that I began to recover.

But most of all, no matter how many times I screamed, people heard. They realized that the only reason I screamed was because I had been silenced. In hospitals, in my whole life. But there, for the most part, I was listened to. 

 

My life began to move, slowly at first, but I built up momentum. Like a child on a swing, I let go of the ground and the hands pushing me down. Some days, my legs swooped against gravity, toes pointed to the top of the sky. I thought I was flying. 

There was not one moment that I was thrust into recovery. It happened gradually, without me even noticing. It was only months later that I looked back and realized I had not been running in place. Some days I witnessed a surge of flashbacks, in my dreams and in waking moments. On other days, I listened to my body and honored my hunger cues. I wrote and talked to friends. I cried for hours in therapy. Did yoga, started a blog. Had panic attacks. Went outside to sunbathe in the wet grass.

Everything was not the same. Not everyone cared and not everyone understood. Those who didn’t told me to “just eat” or that “I was a trigger." But others did and they mattered. They would "hold my hope" for me until I could carry it myself. They told me they were "proud, no matter what,"

​

And at first, I thought, how could you be? Proud of a girl who used to rely on tube feeds? Who was pitifully tied down to beds, screaming even though it didn't do anything? 

But somewhere along the line, people saw something inside me –– perhaps a hidden ability to recover that everyone has. I was believed and believed in. 

And I realized that the EMTs, nurses, and doctors who worked to save my life saw something worth saving. Even the security guards saw a life worth living and that was why they couldn’t bear to look at me as I writhed beneath them. 

 

I am Mira Sunwon Goldstein, and I am somebody.

When people ignored my struggle, they turned their heads away from a suffering girl. They must have been scared of me, because they couldn’t lose a girl to herself. But the cold, desensitized manner killed part of that girl.

The nature-loving, sandal-wearing, flowers-in-her-hair girl. The poet and the bookworm. The girl who won the Most Smiley superlative in the depths of her depression. 

Now I was trying to rebuild her –– break her free from the system that so many others are stuck in. The system that locked me in the “Quiet Room." Forbade the word “restraint” but not the actual thing. Kept me waiting, forbidden to leave my bed for seven weeks and took the outside away from me for ten. 

I was living in pain. I was told, again and again by experts and ignorant people, that my pain was my fault. To stop crying, to calm down, to be patient. Because maybe then restraints wouldn’t be necessary.

Were they ever necessary? Maybe. But they didn’t have to be. Not if I had been offered compassion first and had been told that it was okay to suffer, because everybody does. 

The hand stroking my forehead even as another held me down made all the difference.

Imagine what your two hands could do. 

 

Recovery gave me so many firsts I thought I never would get to experience again. First day out of bed, out of a wheelchair. First paper crane, ukulele song. First day outside in ten weeks. First time back at Starbucks and the library. First shower alone, the steam furling off my skin in waves. First day back at home and night spent in my own bed. 

And lasts, they come and go and you never know it. I didn’t know when I got my last tube that it would be my last. My last restraint.

My last day in the hospital.  

​

Sometimes, a part of me grieves. Because I lost so much of myself. Because I left hospitals with so much more trauma than I came with. I grieve for the children who have only experienced a semblance of my story, and for those who have experienced far more. Grieving allows me to heal, and healing allows me to act. 

Why are so many children in hospitals for short-term but continue to get re-hospitalized in years to come? Stabilization units such as Franciscan’s or Bader are not the answer. Insurance is not the answer; insurance is a reason why inpatient hospitalizations kick out kids who aren’t ready to leave. The care so many receive at these inpatient units is not trauma-informed.

I am sick of hospitals treating symptoms instead of mental illness itself. Most hospitals restrain a child for self-harming instead of educating them on coping skills to fight their urges to self-harm. They are eager to tube before even mentioning body dysmorphia. Stabilization only works for some. Recovery works for all. 

 

This was not for nothing. I am alive because my story speaks for all those that can’t.

It is absolutely necessary to question the system. Why are so many children struggling with mental illness? Why are there so few treatment centers available for those with a "comprehensive case"? Are seclusions and restraints ethical? Should they even be legal? Why is the hospital system better to kids who struggle less, or at least pretend to be okay? Shouldn’t it be expected for kids to be suffering if they are in the hospital? 

​

When a child is suffering, the question is not: Why is the child failing the system? We should be asking ourselves: Why is the system failing this child? 

The system. We put our faith in it because we have to believe in something. We have to believe that society has it right.

I’m asking you to believe in the survivors instead. 

 

The system changed me. Now I am fighting to change the system.