I slept well last night -- only got up 5 times! The cough syrup and Claritin D seem to blunt the dry hacking cough. I characterize the cough pain as RED/DRY -- irritated like the floor of a desert or an old stair carpet in an ancient office building. There are no medical tests today, so I am just living and Marian and I are recording how well I am managing the process.
My energy level was up a notch this morning, but getting dressed and eating breakfast pretty much use up that new found reserve. I tried to spend some time reviewing medical bills and insurance claim forms, but nothing drains energy faster than that.
Time well spent, I think...
Marian went off to do some of the hunter-gatherer functions of the caregiver (shopping at the mall), and I have been spending some quiet time inside my own head -- always an adventure -- always a bit scary. As a result of rattling about in that dusty old place, I wrote a poem today about simply looking through a rainy window.
An odd question
Oddly, the first question that popped into my head when I looked at the rain was, "Is the sky weeping for me?"
Whoa! I had to take a step back and rethink that one. I was at once becoming the center of my own world, instead of simply a sick old man on the fringes of a much larger world. In Rochester, there are a lot of very sick young and old, men, women, and (most heartbreaking) children.
My mask allows me to examine them closely as they pass by each day, as we move from appointment to appointment. I get to know them personally here at the transplant house. I can see their eyes and recognize the same pain and fatigue I see in the mirror. There are thousands of life or death battles ongoing all about me, all day and night. Mine is but one of them. This perspective does not make my fight any less tiring or painful, but it gives me hope to see so many fighting so valiantly. It also reminds me that I am but one of God's children.
I am once again amazed to have so many friends and well-wishers; so many praying for me (and for Marian). It is always a danger, I suppose that those who receive much attention, love, and support begin to build their own world. I feared I had done so, and ensconced myself in the center of that universe. Had I succumbed to the arrogance of the totally self-absorbed? I don't think so, but the tendency is there, and I am fortunate to have Marian as my caregiver. She loves me dearly, but I am not the burning center of her universe.
Day by day, I must, of course, focus on me. Is there a new pain or rash or difficulty? Is my energy up or down? Did I take all my pills? Did I eat and drink enough? The list goes on, and it is always about me. This balance between monitoring me and becoming all about me is a difficult one to maintain. From what I have seen and heard here at the transplant house, this gets out of balance often, and results in conflicts with caregivers as well as plunging into depression for the patient who loses hope.
I guess it's all part of time spent near the threshold of life and death. It's all about us, all the time, and folks just deal with it. Thank God I have you all, with your cards, e-mails, stories, calls, and little bits of home.
Tomorrow will be a busy day, with lots of testing and consulting and meeting and examining.
God bless you all,
Mick