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 small bright blue car that was so tiny it almost looked like it belonged to one of the Build-a-Bears I collected. Her scrubs had Hello Kitty on them, so I immediately approved.
“You must be Becca,” she smiled at me as she headed over to us.
“You must be Lesley,” I smiled back at her and held out my hand. She had a firm but gentle handshake.
My mom and Christy introduced themselves as well.
“These are the stairs we were telling you about,” my mom pointed to the four stairs leading into the house. “How do you feel about lifting Becca, and her backpack full of medical equipment, out of the wheelchair and carrying her up the stairs?”
Although I could take a couple steps with a walker and stand unassisted for a couple of minutes, I was pretty much wheelchair bound and couldn’t manage even a single step, let alone four.
“Considering the fact that the backpack is probably the heaviest part of her, that shouldn’t be difficult at all,” Lesley said.
“When its just the two of us we can put my transport chair at the top of the steps or my walker so I have something to sit in or hold onto while I wait for you to carry my wheelchair up,” I explained. “Since my mom and Christy are here now too, one of them can bring up the wheelchair while you carry me up and then you can just put me right back in my wheelchair.”
“Deal!” said Lesley. “You just need to keep open communication with me and tell me if you feel supported enough, if you need to be readjusted, anything like that. I want to make sure that you feel safe and comfortable.”
“Deal!” I told her back.
Once we were in the house we sat down on the couch that my friend Laura, who at one point had a job as an interior decorator, had designed.
“I have a disease called Small Fiber Autonomic Polyneuropathy,” I began explaining to Lesley. “It’s a very rare form of dysautonomia or autonomic neuropathy. It basically means that my unconscious nervous system is shut down, so anything that the unconscious nervous system does by itself my body can’t do. It’s caused a disease called gastroparesis that has broadened to include pretty much a shut down of most of my digestive system, requiring me to need tube feeding and IV fluids. It’s caused orthostatic hypotension, heart issues, issues retaining electrolytes in my kidneys, it’s paralyzed my bladder to the point where I need to catheterize myself at least five or six times a day, its caused liver function issues, circulation issues, it causes my pupils to be dilated all of the time and react funny to light, it causes issues with temperature regulation, low white blood cell count causing me to be extremely immunocompromised, anemia, hypothyroidism, seizures, diaphragmatic weakness, atelectasis – which means that the little air sacs in the bottoms of my lungs where air exchange is supposed to happen are deflated, fatigue, and balance issues. The neuropathy part of the disease causes body-wide neuropathy, body-wide weakness and numbness and tingling. I have limited feeling and limited movement from the knees down on both legs. I also have a history of a brain tumor that was removed in 2012 and a brain bleed that was repaired in 2013. I’ve been in a wheelchair on and off for the last three years. I’ve had feeding tubes on and off for the last 14 years. I’ve had this GJ tube for a little over a year, same with the Port-a-Cath.”
“Wow, that’s a lot,” Lesley shook her head.
“Becca is a trooper,” my mom said.
“So what kinds of things do you guys need from me?” Lesley asked us.
“I will give you a key to the apartment,” Christy said. “In the morning you can come in and wake Becca up and do her morning routine for her.
“What would the morning routine be?” Lesley asked me.
“I would need you to wake me up, disconnect me from my tube feed and flush my J tube. Then I would need you to empty my G tube bag, empty the overnight straight cathed bags of urine, that I would have sitting in a pink basin at the side of the bed, and set me up to straight cath. Then I would need you to crush up all of my J tube meds, and mix them with the liquid meds and put the meds through my J tube and then flush my J tube with a water flush and set up and start a new bag of tube feed. Then I would need you to flush my port and set up a bag of IV fluids and get that started and get a second bag of IV fluids ready to go and on ice in my backpack. After that I would need help getting dressed and washed up and hair brushed and teeth brushed and all of that other morning hygiene stuff done. Once all that’s done I would just need to get my bags put together and get everything hung on my wheelchair and get brought over to the main building. At night there’s a similar type of routine.” I explained. “I can teach you how to do everything with my tubes and lines, and if you’re still uncomfortable my visiting nurse agency can teach you too.”
“As long as you show me a few times how to do everything with your tubes, port-a-cath, and IV fluid, and just kind of walk me through it, this sounds very doable,” Lesley assured us at the end of the meeting as she was following Chrissy towards the office to get her own key to the apartment. My mom was staying behind with me for a few more minutes before she had to go.
“I think this is a good move for you,” my mom said.
“I think so too,” I agreed. “I like my new apartment.”
I liked the way those words sounded in my mouth. My apartment. I was a real adult with my own apartment. I wasn’t just a little kid living in her parent’s house anymore, I had my own apartment. My apartment.
After my mom went home I had a couple of hours before Lesley was due to come back for her first night of work, so I set up all my stuffed animals on the bed just the way I liked them and then I transferred myself into bed and let myself soak in the beauty of the freedom and the sunshine yellow walls. My crappy scarred lungs felt like they were filled with happiness for once.
Later on, Lesley returned and I walked her through all of my medical routines and we got to know each other a little bit more. I thought about mentioning to her the cute guy that I had seen at the main building and asking her for advice but didn’t know how to bring him up. I still couldn’t stop thinking about him. My first doctor’s appointment wasn’t for another couple of days, so I would have a couple of days where I would just be at the main building all day and could work up the guts to introduce myself to him, only every time I thought about doing that, I got all weak and mushy and nervous inside.
