As a toddler, I spoke before I walked, but I walked right on time too. I hit all my milestones early. My mom had a Master’s degree in early childhood education. She consulted at multiple daycare centers and nursery schools. Some days she would bring me with her to work to show me off. I would ace all of the baby developmental screenings. The other teachers and educators would watch in awe. Back then there was no talk about me having an eating disorder.
In third grade, I began my descent into chronic illness. My skin, hair, and mouth became extremely dry. I started getting frequent pounding headaches.
From kindergarten to the first part of fifth grade, I attended a private Jewish day school, where every day began with a morning prayer service. The Orthodox Jewish Prayer service consists of multiple parts where you remain standing for prolonged periods of … Find Out What Happens Next
The boiling point was in March. It was after one of my blood tests to look at my electrolyte levels. I had to have these frequently to assess if it was time to put me in the hospital.
“Your levels are “circling the drain” my pediatrician had told me… I was ten years old and for the last couple of months, I felt full-to-bursting all the time. Any food I did eat, I immediately threw up. My body had now been running on absolutely no food for a couple of months. Everyone was threatening to put me in the hospital. I was so used to their threats; I didn’t take them seriously anymore. Besides, part of me wondered if I’d be better off in the hospital where they could run some tests and actually figure out what was wrong with me.
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.
The funhouse mirror my mom saw things through
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, … Find Out What Happens Next
The whole genre of my healthcare had changed when I first woke up, swathed in warm blankets after my emergency surgery to have 2.5 inches of dead bowel removed. It wouldn’t be until almost a week later, after all of the testing was complete, that I would find out I had a disease called gastroparesis. The NG feeding tube formula they had been pumping me up with had congealed inside me forming a hardened mass called a bezoar. This in turn had caused a bowel obstruction. After four days of being ignored while I was supposedly being “treated” for an “eating disorder” in the children’s inpatient psychiatric unit, the obstruction had finally just ruptured causing my surgical emergency and the death of that 2.5 inches of bowel.
At ten years old I weighed 38 pounds. For the last two years, everyone had passed me off as a psych case. At … Find Out What Happens Next
My very first symptoms started when I was eight and couldn’t stay standing up through the whole prayer service at my Orthodox Jewish Day School every morning. Also that year, I started having trouble with holding down food and drink. Between ages eight and ten the issues just intensified and turned into a monster that threatened to tear my whole family apart, including the lives of my two little brothers, Michael and Jonathan (names altered for privacy issues) who were having their own issues that got shoved to the back burners because my issues were life-threatening and there’s were just life-altering. My GI issues were so intense by the time I passed out in an elevator at age ten that I hadn’t even been able to hold down any food or drinks at all. Not even sips of Gatorade.
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 … Find Out What Happens Next
