At just barely eleven years old, I had finally crossed the finish line of a several-month-long marathon hospital admission to Schneiders Children’s Hospital due to what my parents had tried to insist were psych issues. The hospital, on the other hand, had proved it was gastroparesis and some other mystery ailments causing heightened levels of inflammation in my blood tests. Terms like dysautonomia autoimmune had been thrown around, but at that point, I had no idea what any of that meant.
My family had recently moved from New Jersey to Massachusetts. This way we were closer to our extended family, like my grandparents, aunt, uncle, cousins, and more. We just wanted a fresh start anyway.
When sixth grade rolled around I started up at a new school. No one was totally sure how things would work out. It was like we had just survived an earthquake and were now stumbling around in the aftermath.
Over the entire previous year, I had only been in school for about three months. The rest of the time I was too busy being a professional patient.
At first, nobody believed anything was physically wrong with me. I had to sit with those infuriating feelings. The ones you get when someone doesn’t believe you and you know you’re right. The whole time I knew my body, and I knew something was wrong.
When I first got transferred to Shy-Lee Children’s hospital, my parents and the doctors had insisted, until they were blue in the face, that I was a psych case. They had gone as far as putting me on a psych unit.
The psych unit claimed I simply had a school phobia. Their theory was that I was trying to stay in the hospital to avoid going back to fifth grade. Eventually, I had a bowel obstruction due to a bezoar. Then I ended up requiring emergency surgery. That was when they finally recognized that something was physically wrong with me, not an eating disorder.
After my emergency surgery, they did a whole bunch of testing which showed severe gastroparesis. They decided I would need an NJ tube long term or at least unitil I was well-established with a reputable pediatric GI doctor that could come up with a solid long-term plan like a surgical tube, a surgical procedure, a medication/diet regime, TPN (intravenous nutrition), sticking with using NJ tubes on and off as needed, or whatever else we might come up with to either get me into remission or support my supplemental nutritional needs for as long as needed.
When the hospital had finally discharged me, my dad drove me straight to our new house in Massachusetts, I never went back to New Jersey. My family had slowly been driving more and more of our belongings up to the new house in Massachusetts while i was in the Children’s hospital in New York.
This was because my best friend, Jess, since before I started elementary school, had a creepy father. He was supposedly a family friend, but he would do things to me and to Jess and her older brother. He touched us wrong. I remember the feeling of his gun in my mouth. That is something that I will never forget.
There was the feeling of blood seeping out of my inner thighs. Bob would brutally cut the inside of my leg with a butcher knife. The cuts would be so bad that they needed stitches. He would just hold a towel on them for a couple of hours until they stopped bleeding. I still have the scars on my inner thighs to this day.
Before I went home from Jess’s house every playdate Bob would talk to me.
“If you ever tell what happened here, you will be very sorry. I will use my gun and knives to kill each one of your family members in front of you. Then I will kill you.”
When Jess invited me over and I tried to make an excuse not to come, I would hear him on the other end of the phone loading bullets in the gun and making more threats in his quiet hiss of a tone and i would have to agree to go over to save my family’s lives.
The abuse had been going on since Jess and I started preschool. The nurses in the hospital got suspicious after catheterizing me and seeing all of the damage to my vaginal area. They asked me a bunch of questions. I was at the hospital in New York. My whole family was staying in an apartment in Long Island at that point. Because we were in another state, I felt safe enough to disclose, but that’s a whole other story.
Now we were safe in Massachusetts and I was getting ready for my very first day of middle school.
My NJ tube was still sticking out my nose and taped to my cheek. It then tucked behind my ear and trailed down past my shoulder. It hooked right up to my pink tube feeding backpack. Even though I had gained some weight back, I was still really self-conscious about how short and skinny I was. Going to a new school was making me extremely nervous. I was worried about people staring at me. I also had nerves about starting out somewhere unfamiliar anyways.
My new school, like my old school, was a private Jewish day school for kindergarten through eighth grade. This new school was much smaller though and most of the kids had been together since kindergarten.
On the first day of sixth grade, I didn’t know where I was going at all. I didn’t want my mom to come in with me because that would have been shameful for a middle schooler. So, I had her drop me off at the drop-off lane. Then I slung my pink backpack with my tube feeding formula and my feeding pump in it over my back. I pulled my backpack on wheels with my school supplies in it behind me on the ground. Once I had both backpacks, I headed into the building.
When I got into the building I went to the office to ask where my classes were. I had no idea where anything was. The lady looked lazily overhead, just taking me in quickly. She didn’t look at me long enough to register the tube coming out of my nose and taped to my cheek. That probably would have given me away immediately as that “special” new girl.
Instead, with her quick once over she snapped her cinnamon gum and told me.
“Honey, there are two kindergarten classrooms, so I’ll have to check on my computer to see which one you’re in. Where’s your mommy?”
My cheeks burned so bad that I was waiting for all the fire alarms in the building to go off. I knew I was no longer even anywhere near my peers in height and weight. This fact had been drilled into me in the hospital multiple times. Being mistaken for a kindergartener made me feel like I wanted to push my feeding tube formula bag, and pump aside and climb into that little backpack with it and let the humming noise it made pull me into a dreamless sleep.
Instead, I took a deep breath.
One thing I had learned in the past year about myself was that I was tougher than I thought. I could get through pretty much anything and then come out on the other side still able to find positives.
I was still able to be pen pals with my real best friend Allison back home. Throughout everything we’d been through, I was still able to love my parents unconditionally. We’d moved away to a whole other state, but I had already befriended the family on my street. They had a bunch of girls my age and we would hang out in my backyard pool. Even though my brain was all mushy from everything I’d been through, I was still productive with my writing. I’d been able to publish a poem in a collection of poetry by young authors. I’d even been able to start writing a book a year earlier and was 88 typed pages into it.
So instead of hibernating with my feeding pump, I pulled myself onto my tiptoes, cleared my throat, and addressed the secretary.
“Actually I’m going into sixth grade and didn’t know where the middle school homeroom was.”
After that, I didn’t know who was more embarrassed. Me or her.
The sixth graders had been told that they would have someone with severe medical conditions joining their class. They had been prewarned that I had a special tube in my nose and looked a little different. In addition they had been strictly informed that bullying would not be tolerated. Despite all of that, sixth grade was not fun.
School probably would have been fine if it weren’t for Natasha. She was a straight-A student and didn’t like the fact that school came so easily to me. Natasha was good friends with this really charismatic, athletic, got-good-grades-and-loved-by-all kid David.
Those two kids thought it was hysterical to make fun of my “elephant nose” (NJ tube). They started at the very beginning of the school year. The bullying lasted all the way through May when I stopped attending. They only ever did it behind my back. Never to my face. I just overheard the comments when they thought they were just out of earshot. My hearing is too good. It’s a curse.
I would also find folded-up notes lying around the classrooms. The other kids passed them all around between each other. The only ones who never got them were me or my only friend Miriam.
Sometimes the notes asked; if I had such a long elephant nose, why was the rest of me such a pipsqueak? Other notes were worse. Some of the notes made fun of the way I dressed.
When I had been in the hospital I had started wearing my parent’s T-shirts. They smelled like my parents and made me less homesick on days when they couldn’t visit as often. Once I got out of the hospital, I still wore their shirts. It made me feel closer to them and calmer. The long hospitalization has affected me so much emotionally. I was constantly afraid of having something happening to keep me away from my parents. Later on down the road, my therapists would explain that the hospitalization had given me PTSD. Future hospitalizations would do the same as well. There’s actually a term for it. It’s called Medical PTSD.
I always paired the adult-size shirts with my own leggings. At 4’4 and 46 pounds, I looked like I was drowning in my parents’ shirts, but they were like a security blanket for me.
The notes about the way I dressed varied. Some of the notes said I dressed like a slob. Other notes said a homeless person, some said a schlump, you get the idea…
The worst notes were in Natasha’s writing. They came from her privileged information. My grandmother and her mother worked together in the same office and were both notorious gossips. Natasha had somehow gotten a hold of some choice extra juicy pieces of gossip. She couldn’t wait to whip it up and serve it to the rest of the middle school. She found out that my original diagnosis was an eating disorder, depression, and anxiety disorder. Worst of all she had learned that I had spent time on a locked inpatient psychiatric unit. Although she never mentioned any of this to my face, I heard the whispers. In the trash cans, I saw intercepted notes and heard kids talking at lunch.
In the morning, my mom practically had to drag me out of the house. I dreaded going to school every day.
When I finally confided in her what was happening at school she alerted the school counselor. I’m not sure what kind of conversation ensued or how or what got back to my classmates, but after that, the tormenting turned into daily notes. There were constant whispers, giggling and gagging noises every time I walked by. No one ever wanted to sit next to me or talk to me except for Miriam.
Later on, in sixth-grade, school was still awful, but maybe God finally felt sorry for me or something because the Reglan that the pediatric gastroenterologist had started me on when we moved to Massachusetts, started kicking in. With the Reglan for the motility, the Miralax and Colace for the constipation, the under-the-tongue, dissolvable Zofran for nausea, and the Levsin for cramping; by January I actually started feeling a little hungry again and was able to eat a little bit and keep it down. They started me on an extremely low fiber, low-fat, mostly liquid diet tailored to a child with gastroparesis. By February I was actually able to get the feeding tube removed.
When the news came that the NJ tube could be removed a grin broke out across my face. It had been so long since I had been happy and actually smiled, that I thought my face was cracking open and bleeding. I even had to put my hand up there to check for blood.\
True to his promise, my grandpa did eat an entire banana on Livestreamed video, peel and all. He even made ape noises and scratched his armpits and everything as he did it. My brothers and mom and grandmothers from both sides watched him do it while my dad recorded it. We all gathered in the dining room for it. It turned into a whole family affair, and I’m pretty sure I wasn’t the only one who came really close to peeing their pants laughing so hard. He even ate that hard brown stem part at that top that holds the bunches of bananas together.
“Not bad, you just got to chew it really hard,” he said. “Probably has a lot of fiber in it.”
We all laughed. That was such a typical Grandpa comment.
I went back to school in spring and hoped against hope that things would be a little better. Over the course of the year I gained a little more weight, I grew a little taller, and I didn’t have an elephant nose anymore. During spring break my mom took me shopping at Justice to get a whole new wardrobe of shirts to replace wearing my parents’ shirts. We thought that now the teasing and bullying would slow down.
It was still a torrential downpour.
At the beginning of May, I’d had enough.
My parents, my therapist (that I met once a week to work through my depression, anxiety, PTSD, and chronic illness emotions), the principal, and the school counselor, and I all sat down together to have a meeting in the school office.
“The other kids aren’t teasing me about my feeding tube anymore or my clothes anymore, but they tease me still because I’m so small even though I’ve grown. They write notes that say I look like I’m a lost little preschooler that needs her mommy. Sometimes they tease me that I’m a crazy mental patient and that I belong in a straitjacket somewhere. They call me anorexic. All of them call me the teacher’s pet or suck-up if I answer too many questions right. No one ever sits with me or hangs out with me except for Miriam. Every time I bring up the whispering behind my back or the notes or the leaving me out, to an adult it just gets worse. I don’t ever want to come back to school!”
There was a lot of back and forth between all the adults. My legs were anxiously jiggling and swinging back and forth and up and down. The adults decided that I was ahead of the game enough, academically, to finish out the year right then and there.
“We’ll start fresh next September with a brand new plan of action and a fresh clean slate.” the principal told me as my parents got ready to take me home from sixth grade for that final time. I wasn’t too keen on ever returning to a building with Natasha and David in it, but in order to get out of that particular building on that particular day, I hesitantly agreed.