Trying to see things the way my mom used to, back before I got my medical diagnoses confirmed shortly before my eleventh birthday, was like looking into a totally distorted funhouse mirror. She thought my body was healthy and my anxiety was the cause of all my health issues.
My mom always fights for me no matter what, anyway, to make sure I’m doing ok. She would even stand her ground with the nurse and the doctors if she didn’t think they were right. After the elevator episode, she never left my side.
I’d had a weekly blood test to check my electrolytes that Dr. Monroe, my pediatrician kept warning me were “circling the drain”. Dr. Monroe wanted to blame it on an eating disorder. She was doing weekly bloodwork. It just kept looking worse and worse due to my intense vomiting, nausea, and abdominal pain. I just couldn’t manage to eat or drink anything and was starving to death.
Immediately after the blood test, I got a unicorn sticker, followed my dad into the elevator, and then passed out. From there my dad brought me to the hospital. At the hospital, they found a million things wrong with me and admitted me to the pediatric medical floor.
From the very beginning of my disease stages, my mom has been on the warpath against the illnesses plaguing me. The only problem has been, that I’m a good guy fighting off the enemy, and she is a good guy fighting off the other good guys.
Sometimes to her credit, she swings around and spears ten bad guys with one sword. The only problem is that then she goes and fights off another good guy.
In the beginning, my mom followed the therapist’s and pediatrician’s instructions word for word. She thought they were her allies. That was back when everyone thought I was a behavior issue at ages eight through ten. I had actually stopped eating due to intense nausea, pain, and vomiting that was out of my control.
My mom thought she could trust Dr. Monroe and the therapist. She had conferred with my dad, who is another safety net in my life. Unfortunately, he is another good guy busily fighting other good guys instead of the bad guys. He also went along with the pediatrician’s plans. They had no idea what else to do.
They made that behavior plan where whenever I ate my lunch I would earn a sticker on a chart. If I filled up the sticker chart I would get a stuffed animal.
I started seeing a psychiatrist a couple of months before I went to the hospital. He diagnosed me with depression and anxiety. My parents didn’t know any better. They just agreed and wondered if the depression and anxiety disorder were what was causing the anorexia nervosa.
I felt like I was drowning. Like I was flailing my arms around but my mom and dad weren’t jumping in to rescue me. Instead, they were just standing there watching and yelling at me to cut the crap and stop drowning.
However, now that I was in the hospital the tune was changing. I had actual lab values, exam findings, vital signs, and tests coming back abnormal.
My roommate was a six-year-old girl recovering from a ruptured appendix. She was, what people thought of, as acceptably sick. I was not always acceptably sick. Sometimes I was a psych case or a waste of space or both. Sometimes, nurses, doctors, and aides on the medical floors thought of those two labels as interchangeable.
Right, that very moment, I was acceptably sick. I belonged in that room on the pediatric medical floor just as much as my ruptured appendix roommate.
They gave me Zofran in my IV for nausea, which helped some but not enough. My mom explained to everyone who played a part in my care that; yes, I was physically quite sick now, but that the cause of my illness was purely psychological in nature. Maybe it was a way for her to protect herself from her subconscious feelings of knowing that I actually was gravely ill with a disease with no cure that she had no control over.
Whatever was going on in her head, subconsciously or consciously, she, and my paternal grandmother who I call Bubbie Beverly, stayed with me every day for the entire month I was at the local hospital. They got me heating pads when I complained about my stomach hurting. They asked for nausea medication before I had the chance to throw up. The doctors ended up jamming a tube up my nose, down my throat, and into my stomach. When my throat hurt from the NG feeding tube they gave me menthol lozenges to soothe it.
My mom rubbed my back when I cried at night. During the day my dad came to visit and acted goofy to cheer me up along with my grandpa. My grandpa said if I ate something and got the feeding tube removed, then he would eat an entire banana, including the peel, Livestreamed. I just laughed.
My whole girl scout troop came to visit one day. We did art projects together in the playroom.
The doctors wanted to send me to the local children’s psych unit. This was because my mom and dad had explained that I had simply stopped eating lunch when I was eight and nine. They went on to explain that I had been diagnosed with a severe eating disorder.
Both my parents had read all of the books about anorexia nervosa. I think part of their research had shaped their thinking about me and allowed them to put me, a square peg, into a circular hole. Sometimes my behaviors and emotions and verbalized thoughts didn’t match up with the circular hole that was anorexia nervosa so they would kind of just try to force me in awkwardly.
Despite my parents’ insistence that I was the stereotypical anorexic, the hospital doctor had still run some GI labs on me. They came back normal. They had also done a CT scan, an MRI, and an x-ray of my abdomen.
All the tests came back normal except for some severe constipation.
So everyone except me agreed that the inability to eat was psychological.
The tests they missed were a gastric emptying study and an endoscopy. The gastric emptying study is the gold standard test for checking for gastroparesis.
My mom and dad wanted the best care for me. Even though the hospital doctors were pushing for the local children’s psych unit, my mom and dad weren’t satisfied. They talked to the unit’s social worker and searched online. They didn’t stop until they found a program for girls with eating disorders that appealed to them. It was in New York City near a program that finds houses for families of kids in the hospital.
The program used all different therapies to treat their eating-disordered patients. Many of their patients, especially their younger patients, were major success stories and had low relapse rates.
“We take girls from age twelve to eighteen. Sometimes we take girls as young as eleven,” they told my mom. They also told my mom that having a ten-year-old there would be pushing it.
My mom who is the epitome of the phrase you catch more flies with honey than vinegar, sweet-talked the program directors’ ear off until he agreed that I “could stay at the inpatient children’s psychiatric unit for kids aged eleven and under and have meals and some therapy groups with ‘my eating disordered girls’”.
There were some really wild and crazy kids on the children’s psych unit. Someone had painted the unit’s floor so that it looked like a monopoly board. The nurse showed me to the Dayroom where there were a lot of shelves with toys in them and a TV. The double-locked doors separating me from the rest of the world were the only tell-tale sign that I was on a psych unit at first. That, and a thick feeling of despair in the air.
Welcome to The Inpatient Child Psych Unit
Usually, if you listened carefully, you could hear at least one kid having a major temper tantrum complete with screaming, kicking, curse words no seven-year-old should know, head-smashing, and pure anguish.
My bigger-than-me six-year-old roommate warned me on my first day there,
“If you hit another kid you get shots in your butt…Do you want to play Barbie with me? There’s a lot in the day room.”
I felt so shell-shocked that I couldn’t respond. After a month in the medical hospital, this psych unit was very different.
My mom and dad visited every day during visiting hours. Visiting hours were only three hours in the evening. When I started getting super agitated and pacing the halls of the unit with my IV pole of tube feeding in tow, a bunch of nurses would lock me in a room called the Quiet Room. Then the staff would stare at me through a plexiglass window in the door. My mom and dad immediately knew that something was wrong, with me
Soon, even in the Quiet Room, this electric wire of energy ran through me and I was hurting myself in there too. It got so bad at that hospital that I would throw my body against the wall, which was not as padded as one might think. I would pull out my hair in clumps and bite into my arms so deeply that I would draw blood.
When my mom and dad came to visit I could barely sit still to talk to them. I had that hot wire of energy misfiring through my body. I had lost control over what I was doing. Instead, this hotwire was in the driver’s seat no matter how hard I tried to fight it.
It didn’t matter how much of my belongings they slowly took away because of the behavior plan the doctor had manufactured. It didn’t matter that they wouldn’t let me leave the unit for activities in the game room like the other kids. It didn’t matter how many times they tied me down to the bed. It was completely out of my conscious control.
At one time I pulled out my feeding tube because I was throwing myself around the Quiet Room so forcefully. Once again it had nothing to do with my conscious control or my so-called ‘anorexia Nervosa or anything. I was so completely out of it that I couldn’t even begin to tell you what was running through my misfiring brain then. I tried to fight off three nurses and a doctor, but I was too weak and they strapped my wrists and ankles down to the bed and put a net type device over my whole body to keep me tied to the bed and then I felt them force the NG tube back up my nose and down my throat into my stomach.
Then they called my mom and dad and told them that I wasn’t cooperating with my behavior plan and would not be allowed any phone calls or visits for the next three days.
At that point, I was behaviorally restricted so much that I was forced to live in an empty Quiet Room with white walls, and a mattress on the floor that I got tied to quite often. They wouldn’t let me have any toys or games or puzzles or any possessions at all. All I could have was a hospital gown with snaps and no ties and hospital-issue mesh granny panties that they referred to as Victoria Secrets.
I couldn’t have any visitors, I had no one with me in the Quiet Room. No one but the One-to-One observer staring at me through the scratched-up plexiglass window in the door. Well, that, and a wire of pent-up wild energy unable to burn its way through me. No matter how many times I bounced around the little white room with the plexiglass window, the energy was still endless. It was still there no matter how many times I hurled myself against the less-than-padded white walls of the children’s psychiatric unit so-called “Quiet Room”. It was still there how many times I ricocheted my head off of the mattress on the floor, the walls, the floor, any surface. The pain was just an afterthought because I was so amped up.
Every once in a while someone like a nurse, or the psychiatrist, Dr. Hizami himself, would come in announcing that they were taking something else away like a one of my fifteen-minute breaks from the Quiet Room, a phone call, or a visit from my parents.
My mom and dad weren’t taking it anymore. This wasn’t the Becca they knew they were seeing, this was some crazy gremlin left in her place instead. Hmm, maybe if you don’t feed a Becca for two years this is what happens?
My mom and dad did some research. They looked up paperwork about my diagnoses, medications, treatments, the particular hospital, the staff, and anything else they could find from the last week and a half I had spent on the the unit. They then researched and researched in books and articles both online and in print and asked experts they knew for advice.
Dr. Hizami had started me on Klonopin for anxiety, and they discovered that benzodiazepines, the class of anti-anxiety medications that Klonopin, Ativan, Xanax, and Valium fall under, can cause severe psychomotor agitation in prepubescent youths.
While the intended effect of the Klonopin was to help me relax, it was doing the exact opposite to me. Because the chemical reactions in my brain from the paradoxical reaction was so powerful, I couldn’t control my behavior. I needed medical intervention. The unit staff could use behavioral intervention after behavioral intervention until they were completely out of breath and energy, but until they controlled the chemistry in my brain, nothing was going to help.
Both my mom and dad strapped on some armor and prepared for battle.
My mom immediately set up a meeting with Dr. Hizami, who was my hospital psychiatrist. Later on in my life I learned that he was just a resident, not even a full-fledged attending. Back then all I knew him as was the doctor that took away all of my toys and wouldn’t let me go off the unit to the game room or have visitors. Instead, he made me go to the eating disorder unit. On that unit I had to eat at least 50% of what was on my tray. When I ate that much I would throw up.
“I’m so disappointed in you for purging,,” he would say, I didn’t even know what the word purging meant.
One of the teenage girls at the eating disorder unit, where I went for meals and some groups, explained it meant forcing yourself to throw up so that the food didn’t make you gain weight. Then it really confused me why Dr. Hizami called it purging when I threw up because I wasn’t making myself throw up on purpose and I was actually trying to gain weight. In fact, I often found myself wishing that they could just give me a pill to gain weight or something because I was having such a hard time doing it on my own.
After my parents confronted Dr. Hizami about the Klonopin possibly being the cause of all my behavior issues, Dr. Hizami hemmed and hawed and then agreed that the Klonopin might have a slight part in it so he finally took me off of it at my parents’ insistence that it would have been malpractice to keep me on it against their wishes, with everything that was going on with me. They were after all my guardians, so they had the final say.
My parents were in full battle stance. They threatened to have me transferred to another hospital and that they would report this hospital for abusive behavior and malpractice towards me if they didn’t give me back, my stuffed animals, my clothes without strings or metal, and my socks and shoes without laces.
“You have to let her have visitors too,” my mom added.
After a lot of consideration back and forth, pulling in of the social workers, and then the charge nurse; my parents’ won their battle. They paraded out; conquests raised high above their heads. I felt relieved that I had a safety net made out of my parent’s love securely positioned underneath me.
Just when my days finally started looking up, icy hot pains began spearing through my belly along with alternating sweats, chills and extreme nausea. I even began vomiting up what looked and smelled like poop but everyone on the psychiatric unit assured me was just dark bile.
I had grown used to pain. After all, they’d been feeding me with a tube that they’d literally slathered with goo, slid up my nose, forced past the cartilage where it had made such a loud cracking noise, I’d thought they’d made a mistake and popped something. They pushed it past my gag reflex where I couldn’t swallow and had choked and gagged on it, and then they had threaded it down my esophagus and into my stomach.
Then I didn’t know what was worse; the pain from the tube placement or the pain in my belly or the nausea resulting from all the crap they dripped through it to feed me. The Kindercal formula looked slightly yellow but it mostly just looked milky and quite innocuous. However, It felt like they were putting burning lava rocks inside me instead,
I took to lying in my bed with pain jolting through me, and tears leaking out the corners of my eyes. Sometimes I could barely let breaths out through the pain.
The severe pain continued for the next four days. During my last four days on the inpatient childrens’ psychiatric unit, the pain got worse and worse each day. The staff chalked it up to my being dramatic, my looking for attention, my being a hypochondriac, and the list goes on.
On my final day on the psych unit,, one of my favorite nurses noticed me. My belly had grown really distended and hard. She also noticed that I was really pale and sweaty. I was camped out strategically surrounded by all of the teddy bears and stuffed animals. People had surprised me with them as get well presents from before I had been sent away to the psychiatric unit (once you’re in a psychiatric unit you are apparently no longer legitimately sick and you stop getting all the get well cards, gifts, visits, and phone calls).
The nurse took me out to the day room where the automatic blood pressure machines are. I wobbled and shook as I followed her there. The room shimmied and spun around me.
My blood pressure was 70s/30s and my heart rate was running frantically in the 140s. Suddenly several nurses had come over to me. one of them put the feeding bag on the IV pole of the wheelchair, another one screwed the pump onto it. Then I sat down in the wheelchair when they told me to in their anxious tones and they race raced me down the hall back to the medical pediatric care unit.
After a lot of IV contrast and imaging studies, it turned out that I had developed something called a bezoar in my digestive tract. This was due to what I would later learn was my gastroparesis or delayed gastric emptying. There are various types of bezoars that can develop in people. My bezoar was a solid mass of undigested fibers from food that congealed inside of me. Bezoars that are made out of food can be plant-based or milk-based. My Bezoar was mostly whey protein-based. It was made from the tube feed that I was getting from my NG tube that wasn’t being digested properly.
My bezoar had been sitting inside me for so long that it got really big. It got so big that it caused a bowel obstruction. What I had thought was just a worsening of my normal pains was actually a surgical emergency. My intestines were actually dying off due to this bezoar being so large and squishing them
One of the doctors called my mom and dad immediately and I was rushed into the operating room for emergency surgery.