In the time I have been writing here about my approaching demise [counting from the Whipple surgery, it is more than three years] I have felt a need to be upbeat and positive about it in these pages.
The source of this pressure is more confusion than mystery. It is a natural bent of mine to seek the bright side in everything from disappointment to catastrophe. But no doubt I am also influenced by reader input that often favors pluck and fortitude in facing the inevitable destruction that is our mutual fate.
In addition, I am a realist. I do not engage in impossible fantasy as our president does and neither do I ignore difficulties. Most of the time I deal with issues head on and work them out as much as is necessary in the moment, sometimes leaving harder aspects for later.
Well, later has arrived and the truth is, it's not so easy now being my old perky self. The odd thing is that it's not about death itself that has me down some days. It's the deterioration on my way to the end.
Remember a week ago when I wrote about how I look like the Rodin sculpture of The Old Courtesan first thing in the morning? That's just the beginning of the day.
Maybe it's the “worst air in the world” in my neck of the woods due to the wildfires, but when I stand up first thing in the morning now, I can barely breathe. I was doing fine lying down and sitting, but not on my feet so I head (slowly) straight for the oxygen concentrator and plug myself in.
Who knew brushing one's teeth could be such an energy drain. Or walking to the kitchen or measuring out the coffee.
Actually, pretty much everything can take my breath away – in the literal, not exhilarating sense.
I gave up making my bed a few months ago and as of this week, I have hired a cleaning service because it is no longer a matter of taking three rest periods to change the bed; it's that I cannot do it at all. Nor can I push the vacuum cleaner anymore.
Taking out the trash is hard too. It's amazing how heavy those under-the-counter kitchen bags can get so I've taught myself to fill them only halfway before taking them out. Now I have taken to putting them in the car, which is closer to my apartment, and drive the 100 feet to the trash and recycling bins.
At first, I felt stupid making that short drive. Now it is a necessity.
Washing dishes, once a boring chore to me, has become one bright spot among all the stuff that exhausts me. It is the one thing left (aside from sitting) that I can easily do without losing my breath.
Even though I took care of my mother 24/7 during the four or five months she was dying and watched her become weaker day by day, I had no idea it would someday be so hard for me to do the household chores I took for granted for more than 70 years. Or, I suppose, I just didn't apply such decline to myself.
In healthy midlife, I think we can't imagine that we will ever become weak and tired and dependent. Oh, all right, make that “I couldn't imagine it when I was in midlife.” Maybe you knew better than I did.
Did I mention that even bending over is almost beyond my capability now? Do you remember that old joke about the old man who knelt down to get something off the floor and said to himself, “I wonder what else I can do while I'm down here?”
That's me now. Actually, it is not a matter of what more I can do. It's that I'll be heaving for breath for four or five minutes after the two seconds it takes me to retrieve a dropped pencil. I try to hang on tight to things now.
My long-winded point today is that the growing impediments to the simple way of life I have nowadays leaves me tired, weak and then dejected, asking myself, why not use those end-of-life drugs right now?
It's a good question. Except. Except. Another thing I didn't know in my mid-years is how strongly life insists on coursing through a body even as damaged as mine is now. A night's sleep (when I can get it) coupled with coffee and the nebulizer puts things right for a few hours and once again, I cannot imagine not being here.
Last week I discussed some of all this with my palliative care provider in a video call. That day, I was also lamenting that using the end-of-life drugs when the time comes deprives me of the final act of life I had wanted so much and we had previously discussed: to experience in my last moments what death is like.
As he often does, he had a good answer for me. Explaining that death doesn't happen all at once, but over a period of time, perhaps I could transfer that desire for knowing the last moments into tracking my physical and emotional transition to the day when I decide it is time for those drugs. To shadow myself down that road.
That surely animated me and made the hard stuff I'm going through worth the effort – for now or for as long as it does. And sometimes I'll tell you about it here.
There I go again, finding the bright side.