CREATURE COMFORTS

I managed to arrange a stretch of four days without the need for an Aide. Thanks to lovely food brought by Stephanie and circumstances of relative order enabled by  Emma and Tamara, I spent a long blessedly solitary Easter weekend.

And, of course that means my mind was free to roam and ruminate on whatever comes up, hence the blessing.

I realize, when new Aides are here, I give myself over to what they need from me, even as I express what I need from them, so I feel uncomfortable in my own home, my own life, when they are here. There is no familiar release, no ease in emotional/mental function, no making work, no processing my environment, just the stress of getting the most mundane needs fulfilled from their time and capacity. And the only thing I seem able to do when they are here is crossword puzzles. I am forced into a management role, constantly monitoring the mundanity of life - which was never before a priority.  Of necessity I have to consider and actively plan my needs for shopping, getting in supplies, cleaning house, gathering laundry, washing dishes, preparing meals, organizing seasonal changes in the apartment. Thinking about these things used to be secondary. I managed to get them done, but not as the center of everything. Now they have completely taken over my life and it's making me stressed.

There is a certain level of pretense required from all of us, just to exist in a larger world. If we are not, at the worst, all frauds, we are at least keeping much of what we are, what we know, what we feel, what we deal with, what motivates us, very close to our vest of "known only to ourselves, and not always even that."

One reason I like time alone without an Aide is that my controversial selves can emerge and live freely expressing what would otherwise seem disruptive.  When I moved into this apartment in 1978 to live alone for the first time, I was asked what it felt like to live by myself. My response was it was like living with a crowd - all the many selves I was just getting too know at that time.

The joy of carving out life as an artist, has been to investigate, validate and suffer the deeper truths of this limited life, to give myself permission to forego the normal, the ordinary, the expected and to live by rules of my own creation.

Sometimes they worked out, many times they did not, but I own them all. 

As I review  this strange time, the latter period of my life on the planet, I experience a certain level of amazement. 

Last week I openly expressed to my cardiologist that I don't believe I have much more time to live and he actually said "I have bad news for you," indicating he believed I would probably live a long time to come.

I remember my 98 year old grandfather asking what was the point "just to live?"

When my sister, at 64, was facing her own assisted suicide and we spoke on the phone the night before, she told me "I'm so excited about what is to come."

Religion gives believers ways of coping with death through myths and other stories of heavenly rewards. I believe death is primarily the issue of those still living. We who are facing dying are tasked with making that transition as easy as possible for those loved ones who will have to deal with our passing.