"The mind and the body are not separate. What affects one, affects the other."
Potential trigger warning: article may contain ED-related behaviors and mention of numbers
read part 4 of my story here:
After placing the feeding tube, there was a fight between the ICU and the regular hospital floor. The regular floor wanted me to stay in ICU. My heart rate was no longer in the 30's, but still way below average. I would be a liability on the regular floor. The doctors in the ICU knew I didn't need to be there anymore. I looked around and saw older patients on breathing tubes, patients who had suffered life-threatening injuries and felt shame that I had brought myself here on my own doing. I was twenty-one confined to a hospital bed, wishing my life away while patients just two doors down were fighting for theirs.
I was excited to be placed on the regular floor. The meals came later and less frequently, and I already felt less anxiety. The doctors no longer picked for me, and I would be given a menu, allowed to pick what I wanted. This was a strange concept for me, because looking at the menu, I didn't want anything. All of the options gave me anxiety. Half of the options were things I had never had before. For the past four years, I had had the same breakfast, lunch and dinner almost every day. I didn't know about options. Options gave me anxiety.
On the regular hospital floor, I had a real bathroom. I was allowed to close the door 3/4 of the way. This new freedom was extremely liberating for me. I told the doctor that she didn't need to hold my hand or my heart rate monitor, because I was confident I wouldn't fall.
I didn't have much trouble getting to the toilet myself, but it was tough to get up, with my legs now mostly bone. If the nurse asked if I needed help, I quickly yelled back no. I would do this myself. I leaned on the hand rail over the toilet, like an older patient and did it myself.
I quickly frustrated the doctors on the regular hospital floor, too. When the nutritionist brought me my meals, I had 30 minutes to finish my plate. I wasn't allowed to use any food rituals, give any food away, or dispose of any of it. There was a camera in my room monitoring my progress. I often had my allergies and food aversions revisit, and offer my roommate portions of my plate. She was happy to accept seconds.
My weight was still declining, despite being fed extra calories through the feeding tube. Now at 82 lbs, I was a liability to the hospital, and they didn't have the resources to treat me there.
I was to be transferred to another hospital, one we were promised specialized in eating disorders.
I was happy to be out of the hospital, sure I would be able to convince the new team of doctors to send me home to take care of myself. I was unhappy about their no technology rule. I would have to surrender both my phone and my laptop. How was I going to finish my homework? I was in the last semester of university, and while I was in the hospital, I had my pile of books on my bedside, so I could email my professors chapter outlines and creative writing pieces to go towards my final portfolio. Now, in the new place, my mom was limited to how many hours a day she would be able to visit me.
I felt abandoned.
I didn't want to go, but as my mom was in charge of making medical decisions for me, I didn't have a choice. It was either the hospital or residential treatment.
I wasn't allowed to walk to the ambulance, even though I had proved I was capable. I was an athlete my entire life, now I didn't have the privilege to walk down the hall and into the ambulance. I was wheeled on a stretcher and I felt like I could melt away with embarrassment. I was capable, not a liability!
When I arrived in the new hospital, I was given a hospital gown, underwear and socks. They made an exception for me to keep on my fleece sweater, because my weight was so low, I needed extra blankets to avoid my temperature dropping any further.
Immediately, I felt like an exhibit in Ripley's Believe it or Not museum. Nurse after nurse came in asking me invasive questions throughout the day.
"Why are you scared to eat?"
"Are you afraid you will get fat?"
"Have you ever been fat?"
"Were you obese growing up?"
I felt vulnerable, embarrassed, and ashamed. I wanted to run, to hide my face in the blanket and melt away.
One of my nurses felt it was a good time to confide in me about her own eating disorder, describing in vivid detail each behavior she used to maintain her slender figure. I was stressed out. I couldn't use behaviors while they were watching me. After I ate, they checked the garbage, under the sheets, and my drawers in case anything was thrown away. I wasn't allowed to use the bathroom for 30 minutes after finishing a meal, and my walking was limited to a few laps up and down the hallway each day. My body was surging with nervous energy and I hated this nurse and her skinny body. I hated that she was getting paid to make me fat and I hated that she wanted to talk to me so much.
We quickly realized that this new facility wasn't fit for treating patients with eating disorders. It was a medical behavior unit. Here, they would be able to stabilize me medically, but not the underlying cause of the disorder. No acknowledgment of depression, no talking about eating disorders. The nurses would put a "!" sign on my door to remind them to weigh me each morning, with a disclaimer not to allow me to look at the scale and not to use numbers out loud or within ear shot of my room. The facility was primarily a psychiatric unit, where they would treat patients with schizophrenia and hold patients on baker act who were on suicide watch after an attempt.
My door would often be kept close, because of angry patients screaming down the hall, or my neighbor, who would run into my room if the door was open, convinced that I was her mother.
The nurses were the least bit sympathetic to me, treating me more as a burden than a valid patient.
"See, that's why you have the tube in your nose," one nurse said after aggressively adjusting the tube, before storming out of my room.
She was mad that I couldn't eat the meal that was sent up to me, yet again. She was tired of me sending meals back and asking for substitutions. She acted as if the feeding tube was a punishment.
Unlike the other patients on the floor, I wasn't allowed to use the shower room, because of my IV, feeding tube, and heart rate monitor. Instead, each morning I was given a tub of water, a few washcloths, soap and hair wash to clean up, if I had the energy.
I didn't.
I told the nurse that I would wait for my mom to come so she could help me, and she wouldn't have it. She wanted me to learn to do it myself.
I cried out of frustration, because I couldn't bend to clean the bottom of my legs and I couldn't reach my back.
I wasn't allowed to shave my legs, because we couldn't have razors in a psychiatric facility. I quickly began to miss these little signs of freedom: fresh air, water pressure from a shower head, and bare legs. I felt trapped in my own body.
My blood pressure was taken every few hours, so the nurse decided to just leave the arm cuff around my arm. It was a child's size, so no one else on the floor would be using it, anyway.
I quickly developed a routine in the new hospital as well. The last meal of the day came anywhere from 4:30-5 p.m., so I would turn in for the night after I finished eating, exhausted from the stress of the meal. The nurses would wake me up at 9 p.m. for my medicine, blood pressure, and any other tests they required from me that day.
On average, I got about three or four shots each day. One every morning at 5 a.m. in my stomach to prevent infection. Barely having any belly fat, this one hurt more than any other. Certain nurses were not very skilled at giving this shot, so I still have the purple scars to remind me I never want to be here again.
The nurses thought it was funny how immune I became to the process of getting blood drawn or getting my blood pressure taken.
After medicine, I would typically sleep through the night, and not wake up until the nurses woke me for breakfast. I was too sad to do anything else.
When they came in my room for blood or blood pressure, it got to the point where I simply stopped waking up, instead just raising my arms in robotic motion, letting them take whatever they wanted, letting them poke me in whatever vein they deemed fit, which for them, was wherever they hadn't poked me, yet.
I slept a lot, because there wasn't much else to do. I didn't want to walk my four laps a day, but when my mom came to visit, she made me. The nurses made me get out of the bed and sit up in my chair to eat my breakfast and start my homework, so they can make the bed. My philosophy was if I never left the bed, they would never have to make it.
I hated leaving my bed, because when I did, I had to drag my IV bag, and feeding tube with me. The wheels they came on were much like when you get a wonky cart at the supermarket and only three of the wheels turn. It was frustrating, and I didn't have the strength or patience to pull it beside me and I often tripped over it, or got it stuck in the doorway. As hard as I tried, I couldn't imagine ever being disconnected from either.
When my mom came to visit, we talked about school and the news. I missed school and I missed the news.
Every time she mentioned the possibility of having to drop all or any of my classes for the semester, I couldn't take it. I loved going to school and I loved being a student and I was determined to graduate on time. Every day she came to visit I asked her to bring me my school books and the newspaper.
While she was gone, I would read my books for school, and write my assignments by hand. I handed her my assignments, to which she would take them home and type them up to email to my professors.
Having my mom come to visit me was the highlight of my day, because it helped me establish a routine. Being confined into this one room allowed me to appreciate the little things in my day. I wanted to know what the weather was like outside, and I wanted her to open the blinds in my room. At this point, the only time I had been outside in the past month had been when I was wheeled into the back of the ambulance. I missed fresh air and I missed seeing the sun. I wondered if it was raining and for how long.
I tried to accomplish as much as I could before my mom came to visit in the afternoon. If I managed to sit in the chair for breakfast, clean up and brush my hair and teeth before she came, I called it a good day.
I hated when my mom came before lunch, because having her in the room while I was trying to eat stressed me out. The doctors were marking percentage of how much of my plate I ate, and when I reached 75%, they would consider turning off my feeding tube. I hated seeing how hurt my mom was during meal time, although she tried hard to be supportive. She tried to distract me with conversation, but I couldn't keep my mind off of what was in front of me. When I saw the nurse carry in the tray at each meal, it was as if I blacked out. The anxiety washed over me and I felt like I was drowning in myself. I couldn't imagine completing 75% of my meal, and if the meal was wrong I threw a fit, which upset my mom, the nurses and the cafeteria workers. I didn't care. If they didn't change it, I wouldn't eat and that was fine for me.
The day that my nurse said that I could take a shower, I was so excited. I hadn't had a real shower in a few weeks and I just wanted to clean my hair and feel the water run down my back. But, I wasn't allowed to go on my own. I could only take a shower if my IV was covered with plastic bags, and my mom helped me in the shower room.
Despite my excitement, I felt immense shame. Despite how many times the nurses had helped me change my hospital gowns, I was afraid to take off the gown in front of my mother. I knew how much she cried when she saw my body. I closed my eyes and pretended I didn't see her holding back tears as she came face to face with my ribs, that were poking dangerously out of my body. She gently moved the washcloth over my shoulders, careful not to hurt me, because my shoulder blades now protruded out of my back. I held on to the shower rail, careful not to fall, because I hadn't stood that long in a long time, but I wasn't ready to step out of the steady stream of water the shower head provided.
There were so many doctors assigned to my case, that we often got contradicting information. Several times I was promised discharge in coming days, which got my hopes up and never came. In my head I prepared of what I would do when I got home, who I would see, and how my transition home would be.
I was terrified to be home, knowing left to my own devices, I wouldn't know how to change my behavior. I had accomplished many difficult things in my life, I couldn't understand why I found it so impossible to feed myself a proper balanced dinner. I couldn't understand what had went wrong in my brain to make myself hate my own existence so much.
After a broken promise of discharge, I learned it was possible to be sued for rights to your own body. That week I was taken to mental health court, where the hospital would go to the magistrate and ask them to keep me for up to six months against my will in order to properly care for me. The hospital was convinced, if left to my own devices, I would go back to my old habits and eventually end up dead. They were damn right, if they sent me home, I would restrict twelve times harder to regain all of the 'progress' I was convinced I had lost.
I lost in court.
Although I would be getting my feeding tube removed, because I had proved I could consistently finish meals voluntarily, I would be staying another week on the psych floor.
Here, treatment would be focused more on my depression.
Having lost in mental health court, I didn't leave my bed for two days. I was more depressed than ever. It was a week before Halloween, and I wanted to go home so badly. I wanted to return to school. I wanted to go to classes in person. I wanted to go to the bar with my friends and go on dates. I wanted to go for a walk and experience the sun beating down on my back. I wanted to inhale deeply and fill my lungs with fresh air. I wanted to be off the IV, have the feeding tube out of my nose, and I wanted to go back to my old habits.
I was terrified of changing floors. I had a routine here and I had my own TV. My mom was allowed to stay for half the day, where now she would only be allowed to stay two.
I felt abandoned.
I was convinced I did not need to be on the psych floor, just because I had an eating disorder.
I was right, and again I felt like an exhibit.
The treatment on the psych floor was geared more towards addiction and I had trouble relating lessons learned in group therapy to my own life. It all felt like BS to me and I felt like a prisoner.
The other patients were hyper-concerned with my condition, but I made friends quickly, because I was always super willing to give away my dessert and milk, and anything else somebody might have wanted off my tray.
I had a week of eight hours of group therapy, before I would be released into my mom's care.
The first step out of the hospital in six weeks felt like I was released from prison. I felt as if I could have gotten high off the first deep inhale of fresh air, a little pleasure that had suddenly become so significant. Air.
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