Jeff, the man of my dreams (although, at that point, I hadn’t told him how I felt about him), was waiting for me at my spot near the fireplace when I got off the elevator and turned the corner into the dining room in the main building of Side By Side Assisted Living. Lesley, my private duty aide, parked me right next to him. He had a big impish grin on his face, but when he saw I’d been crying, his grin melted away and he looked concerned.
Jeff with his impish grin
“What happened Becca?” He asked me.
“I’m not allowed to say,” I told him, “But I’m not allowed to have any men in my apartment anymore.”
“Who said that?” he asked me. “Your parents? They shelter you way too much, you know I-”
My friend Laura came to pick me up and bring me to the synagogue (Shul) every Saturday for the Jewish Sabbath services and every Jewish holiday. When she came to pick me up the day after I’d been promised by Tanya, the social worker at Hell-Crest Commons the nursing home I’d been living at for almost six-month and Jillian my main provider at the nursing home they would figure something out, I was far from settled. I had been forced to take a break from calling places, and asking questions (because it was the weekend), but I was still busy making lists and doing more research, and worrying my brains out of my head. It was like my brain was a washing machine set on the highest spin cycle and someone had put too much laundry soap in it so it was spraying bubbles everywhere.
After having been at Hillcrest Commons Nursing home for three months and having a meeting about my progress I was feeling devastated. I had just found out that my parents were kicking me out of the house because I too was sick and that unless I found a way to get rid of my GJ feeding tube my port-a-cath, my oxygen (that I used overnight and occasionally during the day), to stop using catheters, and got out of my wheelchair than I would not be allowed home. According to the top specialist in the world on my condition, I was just going to continue getting sicker and I would never be able to eat by mouth again, would continue to lose mobility, would never be able to urinate on my own again, and would need oxygen more and more as my disease progressed. This meant I would never be allowed … Find Out What Happens Next
The partial hospital program rescued me after we realized that attending regular middle school just wasn’t going to work out for me. My private Jewish Day School had really small classes, but it was like a giant clique where I was left behind alone with only one other girl, who always had her nose in a book and was oblivious to the world around her.
I had gone to most of the sixth grade but bailed toward the end of the year when I couldn’t take the bullying anymore. Then I went back for the beginning of seventh grade, but again, didn’t last long. My gastroparesis flared up which stressed out my parents, who, big surprise! Tried to blame it on psychological causes, even though I’d had extensive testing done at the hospital when I was ten with a gastric emptying study showing that I have one of the most … Find Out What Happens Next
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
