Change in Perception

     Yesterday I downloaded a scientific dissertation to read about fatigue and PSC, the lovely liver disease I have. I'm reading and reading and learning that more women than men experience the fatigue, that it comes with depression-like symptoms but doesn't respond to antidepressants and on interview with a psychiatrist doesn't add up to depression either. I also read that sleep for the fatigue is not "restorative." Now I snagged onto that idea and put some time and thought to it.
     My naps don't really make me feel better. It's not like I jump out of the nap-bed and think, "Oh, gee whiz, now I can do ..." or that I run out of the house and exercise or anything else that would indicate I really felt better after napping. Huh. So, last night finally I asked myself this whopper question, "Why nap?" It just subtracts from my waking hours and doesn't accomplish anything positive.
     Keep in mind also that I have trouble sleeping at night and that goes with what they term "daytime somnolence." Hmmm. I may nap now and then, but it's not part of my daily plan anymore.
     So what's the change in perception? I am no longer putting PSC at the center of my life anymore. There's no need to – now, and perhaps there never was a need. It's difficult to have a disease for which there is no treatment except for transplant. And to be eligible for transplant, you need to be really sick. It's easy to make the goal "oh boy, let's get sick!" But that proves to be a rotten way to live your days.
     It's daily life I am concerned about. The quality of each day is what adds up to a life. I want more creativity, more writing, more love, more fun, more happiness every single day. That's what I choose right now.

What I Imagine

     I receive a Daily Writing Prompt every morning from my writing mentor, Cynthia Morris of originalimpulse.com in Denver (though she's in Paris for the next three months); I'm paid up for the year. In an email, she gives all the DWP folks a short phrase to start off a 15-minute freewriting spree. Lately I've written a couple of fiction pieces during that time, and when I wrote down the prompt from Thursday, I knew where I was going with it. Not necessarily how it would end up, but at least how it would start. Here it is.

     Safe at home, he took off all his clothes and stood in front of the mirror to view, all on his own, his surgical scar. He reached up and with his fingers lightly traced the whole scar, starting on the right side. It was long and extensive. It traced a Y on his body from just below his ribcage on one side to deep on his belly in the middle and extended all the way to the other side of his body. There was his belly button still peeking out. When he finished touching the still-red scar, he covered his right side with his right hand above and below the rib cage. The roux-en-y incision was for this, this warmth he felt below, his new healthy liver.

     He didn't know what to think anymore. He'd lived with illness for the past eight years and now, thanks to James (who had a matching scar on his body), he had a chance at life with health and energy and without wondering when the next symptom would begin, when a new infection would put him in the hospital, when were the next round of CT scans, -oscopies and biopsies of all kinds, how fatigued he'd feel, how much he itched. All of that he was still getting used to setting aside in his mind. He didn't have to be sick again. Oh, there was a 35% chance the PSC would return. But right now, this moment and many, many more to follow, he didn't care at all. His life opened to him again.

     He hoped he would be smart this time. "Damn," he thought, " this is like returning from the dead. That's just what it's like." He wanted to call James right now. He knew James wasn't feeling as good as he was physically. He had just taken 60% of James' liver and it would be growing back to 100% very quickly. His new portion would grow to 100%, too.

     He felt huge, he felt full of life, he was ready to jump back into life. His doctor had warned him not to go too far too fast, though. "I feel so tempted, though," he murmured. He felt the chill in his apartment and put some fleece pants and a hoodie on. The incision was still sore but he'd had no complications in the hospital and his skin was healing well, the doctors and nurses had told him. God, nurses and doctors won't be a huge part of my life anymore. Mentally and emotionally, he was making huge adjustments to this almost unimaginable physical transformation.

     He had made it through. He was just now taking it all in. Yes, he needed to call James now. He needed to talk to someone, and this was someone who would always share this experience with him.


Okay, end of story. But it gave me a goal for being. I can handle this positive outcome.