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-”
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
My safety net was what my whole life manageable. My life was pretty much one big medical issue. Luckily I had two parents and two brothers to support me. My safety net was made up of two people, my mom, and my dad.
They didn’t always make the best decisions for me, in fact, sometimes their decisions messed things up for me really badly, but they loved me 100% unconditionally and always tried their hardest to make the best decisions for me.
It all started when I was eight and began dealing with muscle fatigue, then when I was ten I first got diagnosed with gastroparesis (a paralyzed stomach) and had to have emergency surgery to have 2.5 inches of dead bowel removed and then had to have an NJ tube placed.
About four or five years after my heart problems had climaxed, my blood pressure took a surprising turn.
My whole life my blood pressure had run so low we worried about me tripping over it. This had always been concerning to Dr. Oster and my other doctors because with such a high heart rate and such low blood pressure it was too easy for me to go into hypovolemic shock. In fact, one of the reasons I was admitted to the hospital so frequently was due to hypovolemic shock. We referred to it as bottoming out.
When I bottomed out, I would turn bluish-gray, get really clammy, and if I caught it myself before it got too severe, I would call for my own ambulance from wherever I was. It was the worst when I wasn’t home and was in an embarrassing place. An embarrassing place was pretty much anywhere … Find Out What Happens Next
I’d had a rough ride through childhood and had spent it going in and out of hospitals due to gastroparesis, an inability to maintain a normal heart rate and rhythm, blood pressure issues, frequent passing out, hypovolemic shock, frequent infections, and dehydration. For much of my childhood, I’d been dependent on an NJ tube for feedings. I’d been followed by an adolescent medicine doctor, a gastroenterologist, a cardiologist, a psychiatrist, a therapist, an infectious disease doctor, and a nephrologist (kidney doctor). It was a couple of days before my one-month follow-up with Dr. Green, the nephrologist, but on July 2nd I was celebrating my nineteenth birthday and I was also celebrating my graduation from high school and the end of my first year at Holyoke Community College. My family and I were too busy to worry about how disabled I was, we were celebrating two major milestones in my life … Find Out What Happens Next
Looking like a five- or six-year-old when you’re twelve causes big problems in middle school. When you add to that the fact that the most popular girl in class, Natasha, got a hold of classified information that you spent a week and a half on a children’s psychiatric unit in fifth grade, that’s raising the problem level even higher. If you started sixth grade with a tube coming out of your nose to feed you because there’s something wrong with your stomach, that right there is strike three. It’s game over if you know all the answers to the teacher’s questions and usurp Natasha’s position as the “smartest kid in class.”
The year before, I finished sixth grade early because the teasing and bullying got too brutal for me. I was way ahead academically (despite a developmental delay in other areas) and could have easily skipped a grade or two … 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
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
