Storming The L-TACH
It was a financial decision I’m sure. My insurance would no longer pay for hospital care because there was nothing more the hospital could do for me, with no medicine or treatment that could make me any better, but I was in such bad shape, my family could no longer care for me at home. I was sixty years old, confined to bed, wearing diapers, and getting nutrients from a tube down my nose. I weighed less than a hundred pounds, and I had lost my rational mind. There was only one place for me: LTACH. Long-Term Acute Care Hospital. When I was younger, we called it the nursing home. Its job was to watch over me, and keep me in a holding pattern until either I died, or got a new liver. Nobody was taking odds on the latter – my days on this world were done, according to my medical caretakers, but there was a spark in me. It ignited my will to live. If anyone had asked me about it back then, I would have said it was God, saving my soul, and perpetuating my life. If anyone were to ask me about it now, I’d tell them the same thing.
The worm made its home in my belly, near the bottom. As long as I didn’t disturb it, it didn’t bother me so much; it remained inactive during the day. I practiced keeping perfectly still – but at night, I couldn’t control the movements of my body. Sometimes, I’d wake the thing up. Alone, in the dark, surrounded by machines beeping out my vital signs, I’d search my mind for a reason to call the nurse. Often, I’d cry with relief when they came – relief from fear, like when my father would come to my bedroom after I’d had a nightmare. Like him, they weren’t always coming with a caring heart, but more out of anger, telling me how bad I was as they yanked here and there at my bedclothes, straightening out the bed, telling me to stop making so much noise.
When I pressed the call button for the nurse, nobody came, so I started throwing stuff into the hallway outside my door – mostly books – they were heavy and indestructible. If thrown correctly, they made a great whopping sound against the floor that reverberated down the hallway. It made them all mad at me, but I didn’t care – it meant someone was going to spend a little time in the room with me, even if just long enough to yell at me for acting a fool. I couldn’t believe I’d turned into one of those crazy guys, screaming at the help and strategically timing my bathroom movements to make sure everyone had something to do to help keep the worm out of my brain.
In the middle of all this chaos and craziness, I found a friend, “Alice.” I knew her from over forty years earlier, when we were in high school together. I helped her get through interferon therapy. We had both lost a dear friend to hep C, and for some reason that I’ll never figure out, she didn’t seem to mind me waking her up in the middle of the night, and with so many years separating us, we had a lot of catching up to do. So we’d talk about old times and laugh and cry about our old friends. It was like we’d grown up during a hepC epidemic. It seemed like everyone from back then had gotten themselves infected – that we’d lived in a cluster of hepatitis C, but nobody wanted to talk about it. What was the point? At the time, it was still interferon, or the highway. Nobody had any insurance for treatment; those who did had tried and failed, and if you admitted to being infected, you were admitting to being a junkie. You were saying that at least one time in your life, you had descended into something like shooting up in a gas station bathroom, unaware that your buddy, whose syringe you were using, was infected with death, and that he’d just passed it along to you.