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-”
Six months after my admission to Hell-crest Commons I was finally preparing to leave. I wasn’t going home. My relationship with my parents had changed completely. But I was preparing to leave. My feelings about the situation were very mixed, but I was very happy that I would no longer be living on a medically complex floor of a nursing home. No matter how nice and buddy-buddy Jillian the nurse practitioner at Hell-crest Commons had tried to become with me, I would never be comfortable with her. Not after everything she had put me through.
However on Monday, the day before my official discharge date, she found me in my room early in the morning and pulled me into her office.
“Can you transfer yourself into that crappy nursing home wheelchair and meet me in my office?” she had asked me.
My future was looking brighter than it had looked in a very long time. After six long months, I was getting ready to leave Hell-Crest Commons, the nursing home I’d been imprisoned in.
Side By Side, where my mom, Anna (the contact my friend Laura’s social worker friend had given me) and I were interviewing with Chrissy (the nurse manager)seemed like it would be the perfect fit for me. Especially because Anna was getting me the special PCA (personal care aides) services that MassHealth (Medicaid) provided to help take care of me and help me function and be more independent without needing to rely on my parents for everything.
My mom was discussing rent and pricing with Chrissy and Anna. Chrissy was saying that normally the apartment was $1000 a month, but because I didn’t eat anything she would bring it down to $900 a month. That didn’t seem quite … Find Out What Happens Next
About an hour earlier I had arrived at the only rehab/nursing home in the area that would take someone as medically fragile and medically complex as I am. The nursing home was called Hillcrest Commons, but I had started to call it Hell-crest Commons. From the moment I rolled in the door I knew I was in trouble, but when I med with the nurse practitioner that would be in charge of my case while I was there, her name was Jillian, I had full force alarm bells going off as loud as possible in my head. She basically told me that my disease wasn’t really as bad as I thought it was and that I didn’t need my tube feeding or my IV fluids. I knew this was wrong, I knew what the leading experts in the world on my disease had said about my treatment and I was … Find Out What Happens Next
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
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
If you wanted to look up the word sick in the dictionary, you would probably find a picture of me. Ever since I was eight years old and started struggling with muscle fatigue and appetite loss I have been on a downward trend in my health. By the time I was ten I had had my first NG tube. This was followed by my first surgery when the NG tube caused a bowel obstruction. Then I had to deal with an even thicker NG tube to suction. This was followed by my first NJ tube.
I spent a good chunk of fifth grade in the hospital, and went home from the hospital with the NJ tube still in place and a diagnosis of severe gastroparesis. The rest of my childhood was spent racking up frequent flier miles at my local children’s hospital. At age thirteen my heart rhythm disturbances took … 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
