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-”
I hadn’t even been living on my own for a full week, and already, disaster had struck. About five days earlier I had been discharged from the nursing home that I not-so-lovingly referred to as Hell-Crest Commons where I had been held prisoner for six months, I had then moved into the Independent Living section of Side By Side Assisted Living in Pittsfield. While I had been loving, living at Side By Side, earlier that morning I’d been molested by a man that I thought I could trust. I’d been molested by a man that I thought was my friend.
Not knowing what to do, I had called the main building, and Marina, the overnight staff had picked up and was on her way over from the main building to my apartment to help me out.
Sunday morning was hell. That morning I’d been molested by John a sixty-somethng year old man who I had thought was my friend and had invited into my life along with Jeff the man who I had an intense crush on and who I considered an extremely close friend,
That morning, Lesley, my private duty aide that came in to take care of me every morning and every night, came in earlier than the 10 O’Clock she was planning on coming in at anyways. She came in around 9:30 after my mom gave her an emergency phone call letting her know what had happened.
Marina, the overnight staff at the Assisted Living Side had been over to check on me and offered to wash me up, but I was terrified to get naked in front of anyone that hadn’t already seen me naked, after the events with John earlier that … Find Out What Happens Next
In December of 2015, I was finally discharged from Hell-Crest Commons, the nursing home that I’d been living in for the last six months, and I had moved into the Independent Living Section of Side By Side Assisted Living where I would be getting something called PCA care which basically meant people that I chose myself, and that I was the boss of and would train would be coming into my apartment at Side By Side to help take care of me. because it would be 2 to 4 weeks before the PCA care kicked into effect my parents had agreed to pay out-of-pocket for a private duty aide until then.
Lesley, the CNA who was going to be my private duty aide, was right on time to meet Christy, my mom, and me, over at my apartment on the evening of the Tuesday I moved in. She drove a … Find Out What Happens Next
When I got over to the main building of Side By Side Assisted Living on my first morning officially living there, I had Lesley, my private duty aide (that would be working with me for the 2 to 4 weeks before my Medicaid provided PCA hours kicked in) wheel me into the dining room where the fireplace I’d fallen in love with on my tour a few days earlier was. That woman who had asked me if I was in school the other day was sitting in one of the chairs by the fireplace with her knitting. Lesley moved the empty chair that was next to her so that she could park my wheelchair in its spot.
“You can’t rearrange the furniture,” the woman who was knitting told Lesley.
“I just want to move this chair a little bit, so Becca can sit by the fireplace.” Explained Lesley.
For the two days after I spoke with John, a very tall big man who walked with a serpent cane, all I could think about was meeting Jeff officially. John had informed me that he was really good at fixing computers and was in charge of the internet and computer system at Side By Side Assisted Living the place where I now lived despite the fact that I was only 24 years old. John had noticed the internet was down in my apartment and offered to fix it. We had a long conversation where he somehow picked up from me that I had a major crush on Jeff.
“Jeff and I go way back,” Jonh told me. “He’s amazing with computers himself. How about I bring him with me when I come over to fix your internet, and then the three of us can just hang out?” he suggested.
When you have any sort of severe life-threatening chronic illness, there is a terrible feeling of being at the mercy of the medical system. If your doctor is in a bad mood it could be the end of your life. That is not an exaggeration.
I suffer from a disease called Small Fiber Autonomic Polyneuropathy, which is a very rare condition that most doctors have never even heard of, because of that I often get denied the proper treatment even though I know what the right thing to do is. The doctors don’t like to admit they don’t know something so they just plow forward with their ideas and I’m the one that gets hurt or sicker or almost dies (not an exaggeration, I’ve lost count of how many times I’ve almost died due to doctors who don’t know about my illness deciding they know more than me and going … 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 had been living in a nursing home that I had not-so-jokingly been referring to as Hell-crest Commons for months, with its’s evil nurse Ratched (Ahem, I mean Jillian) the nurse practitioner who was my primary provider and in charge of my care there.
After spending 5 months at Massachusetts General Hospital in 2014 I had learned that I had a severe and rare condition called Autoimmune Small Fiber Autonomic Polyneuropathy (Autonomic SFN) and would require IV fluids and tube feeds or TPN (IV nutrition) for the rest of my life.
Flash forward a year, I had spent three months at my local hospital for what started as a bowel obstruction and then just morphed into a whole bunch of other issues. During that hospitalization I just got so sick that there was no way I could just go home from there, so I had been transferred to Hell-crest Commons … Find Out What Happens Next
Tuesday morning, I woke up early. Usually, I tried to sleep as late as possible because there wasn’t much to do in Hell-Crest Commons, the nursing home that I’d been living in for months now. The only times I’d get up early was if they for some reason scheduled PT or OT early. This time I had an appointment that afternoon with the Nerve Injury Clinic. The Nerve Injury Clinic was at Mass General Hospital in Boston. They were the ones that had done my skin punch biopsy while I’d been at Mass General for 5 months in 2014. Dr. Hurrowitz who was my primary neurologist there was the one following me. He had been the one that had originally come into my room at Mass General to tell me that he knew what was wrong with me and had proceeded to explain my new diagnosis to me.
