Watching the parade go by

Every once in a while I’ll open the Windows Task Manager to see what is going on under the hood of this gadget, there appears to be about 30 or so processes going on at any one time, I’ll do a Google search of a program name, read a line or two it, and then carefully, to avoid disturbing their work, close that window. I have installed a couple myself, I want to have some input to my own machine; I have seen to it that my computer clock is synchronized with the Master Clock of the U. S. Naval Observatory, and that the two clocks will talk to one another weekly, the talk is one-sided of course; yesterday I installed a telephone service that runs on the WWW, there is a nice blue light t glowing to show that the device is working, working at the rate of $20 per year, working so that I can hear what callers say—-but no one can understand me or the messages I have left them. I just like to have some input to the party, however faulty.

 

The previous paragraph was a long way round way of saying that I have only bits & pieces, small programs running, this morning, I lack the theme, even though everything is running well:

-My new tools are a mixed success, I’ll work on making the phone program better; I’ll enjoy fooling round with OpenOffice Writer, fun fonts for fooling around, and such.

-We are at the beginning of a winter storm, the third in a couple of weeks; this is fore casted to drop a foot of snow on the far-northern suburbs, perhaps eight inches downtown, winds gusting to 35, the sleet portion began here about 8:30.

-I feel an obligation to write something current about Lyrica; I am staying at 300 mg. per day, with 1000 mg. of acetaminophen added; my intention, my hope, was that this stuff would do some kind of continued repair, that I’d be able to lessen the dosage; but I feel that at I am at the edge, that I can feel all the circuits are ready to fire.

What I mean by the circuits firing is that this whole business is about electrical circuits firing signals that are being read by the brain as pain. The mechanism for modulating those circuits is busted, a neurologist has told me that the circuits were burned out.Sufferers know exactly what I am saying here.

That’s all I can say about that, except that it is wonderful to be on this side of the line of pain, really wonderful.

-I have a couple of Valentine’s Day cards ready for the grandkids, it was fun to pretend I was a kid as I chose them, what would tickle the fancies of a 4 and a 6 year old? It gives me a chance to use an old tool just brought up to date; I have had the nib of my fountain pen shaped, sent it to someone who put on a fine-oblique shape. It’s fun to write with this thing, reminds me of my first sports-car, (it wasn’t mine, the Austin-Healy Midget belonged to a girlfriend; she was cute, and the car was great fun). There aren’t many uses for a pen, not many hand written checks to write; I have bought my first Moleskine notebook, I could use it with that, but I don’t very much. Anyway, I recommend for anyone with an old pen, discover the fun of writing in your particular way, on a sheet of good paper, just try it.

-I am sending four books to the bookbinder today, using some of my tax refund for that; these are the ones that resonate each time I delve; in truth it is I who resonates, I feel something when I find a passage that opens up some part of me that was unknown. It is important to have books like this, they keep my neurons firing in new patterns, always changing, exploring. No book is holy unless it moves the reader along the path.

-I keep having the feeling that I should be somehow thankful for being rid of the major depression, as if there was a weight lifted, rather than a weight that I have decided not to carry any further; that I should write something memorable about how it is to be born at this age, how I see clearer because I saw darker for all that time—I’d like to say something memorable, but can’t, it has passed.

 

All of the above are running in the back of my mind, all adding to something that made me sit down here this morning, something I want to get off my mind.

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I am back from a trip to the video rental and to the supermarket; it is better to lay in supplies at the beginning of a storm, far better; I have the recent release of 30 Rock that will get me through the next day or so, enough groceries of the basic type. It is sleeting, the temperature is just at or above freezing, walking is slippery, tiring sliding through and across watery snow; the prediction continues as before; a good day to write, to figure out how to make the new phone better, to listen to Bach. The books were mailed to the bookbinder, finally.

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The other reason to go for a hike in this storm was to see what I want to conclude here this morning, what was the reason I started this log event before I was out of bed?

I intend to say again that all of those items above are just that, experiences, chores, responses to the nature of things–none of primary concern.

As Bert and I sit in the hallway, out at the home, we watch the parade go by; people of purpose doing whatever they need do, people beset with all sorts of afflictions, acting as they must in response to their problems, the smile he gives me when I shake his hand and say “hello old friend”; none of these is the ultimate concern: that is a different matter.

The experience

Yesterday I had a colonoscopy: The event started the day before that with the “emptying and washing of the bowels”, somewhere in the literature it says just that perfect explanation of what it is about. I could write the details of it but I think that I won’t.

Everything was early yesterday; I awoke at about four, the alarm had been set for half past seven, after laying there and fidgeting for an hour I got up to a morning where I couldn’t do anything; no coffee, no cereal, no fruit, and lots of time to do none of those things in. I needed some cash and was going to walk about half a mile to my bank, save the service charge and get a little exercise, but it wasn’t long before I realized that I had better not stray too far from the porcelain, there was some residual rinse water that needed to come out. Eventually I went to the ATM at the corner supermarket, paid the two dollar service charge, and in the process realized that it was a cold morning, my ears were tingling and I felt chilly, I hadn’t had solid food in about forty hours and I felt the absence .

There was no sense hanging around home, dithering is the right word here; I was going to treat myself to a taxi even though the bus would have taken me right to the hospital door, sometimes a treat is appropriate. The driver was a Romanian with dyed hair, sometime I should write about guys dying their hair, he talked all the way down, talked at me not with me, he reminded me of the sparrows who chatter and bicker in order to have the full feeding experience.

The G. I. Department is on the fourth floor, signs directed me to the check-in area; I stood at the desk, beside another couple, looking around to see if I remembered anything about the place; “sir, please go back and stand between the two tapes, I will call you over when I have finished with my current patients”, chastened I retreated to the area between the two tapes. She did call me over precisely four seconds after dismissing the couple before me, she said her piece, pointed out where I was to sign, tut-tutted that the form sent to me did not actually have my name filled in by whoever sent it, I signed, initialed, listened, nodded, took my buzzer and sat down. The receptionists act was not unappreciated by my fellow waiters, there was a man smiling behind his paper, a woman rolling her eyes and nodding to another as yet another couple was chastened to “wait between the lines until I call you over”, it reminded me of Miss Coulter in the fourth grade, she gave me the strap twice that year. I had barely opened my paper when my buzzer went off, surely it was a mistake, I was forty minutes early.

It turned out that the patient before me didn’t show up, so I was to go directly in and be made ready; two hospital gowns that I never did manage to tie correctly, an I. V. valve put into the top of my hand, I was walked to the examination room. Right ahead of me, at the end of the bed was the closet holding the black snakes, they hung head down waiting to be chosen, I made some comment about “the black snakes” and the closet door was pulled down. Connecting me was the work of two women who worked quickly and courteously, this was some smooth operation they had going here. The doctor came in, looking that plucked chicken look that they have in their scrubs, he gave me his speech, statistics of perforation, and some other potential problem was mentioned that I don’t remember, he told the nurse to start me with, and he gave two numbers.

Next I was told to roll on my back so that they could disconnect the tubes, the wires, make me ready for recovery—the whole thing was over, the doctor was gone, I was to be recovered.

Juiced, graham-crackered, I recovered enough in an hour to be able to dress myself, sign more papers and be walked down to the transportation area in the main lobby, there a bus that would take me home.

I had had five polyps, small ones, “like pimples” the nurse said, and now they were gone and I was to call the doctor on Friday for the pathology report. Now I could continue with my life.

This morning I woke up and realized that I was pissed off, felt frustrated and angry, how come? At first there was nothing that I could come up with that could make me angry, the finding of a few tiny polyps was pretty good compared to the two previous years, whatever they found would be too young to be dangerous, the process was smooth and far quicker than ever, I had had no discomfort at all. I had walked out of there my morning paper still unread; why was I pissed off?

Is it childish to be angry that I wasn’t allowed the experience? Previously I had watched the real-time video of the journey up my back channel, had talked to the doctor about this and that, asked questions as I thought of them, watched everyone as they did their tasks. This time it was far more efficient, quick and yet courteous, nothing whatsoever overlooked, but I had been expecting the full ride, sights, sounds, commentary, stories to tell, that is what was missing. Is it childish to want the experience?

I fill the bird feeder for the experience of watching them, waiting for them, observing how they go about their bird life. I will walk up to the video store instead of going to the big chain place because I will hear how Dave’s new girlfriend is working out, what things are going on in the neighborhood, benefit by walking the mile. I drink very good, strongly brewed coffee because I like all that that is about.

A chauffeured Town Car or limousine is about eliminating experience, passengers are muffled in padded black leather, behind tinted windows, doors are opened and closed for them, they experience little, and they pay a lot of money to be denied experience. There is the paradox.

I have had the best medical care there is, done in a major teaching hospital, by people who have perfected what they do, there is absolutely nothing for me to complain about, nothing that should be done differently in future. And yet I was angry that I was denied the experience.

I volunteer to sit with people who are dying, I do this for the experience of it; I can and will in future describe this experience in its changing way, it is alway for the experience of it. Without experiencing what is there, what can I know, what can I learn, what can I transcend? I write this weblog for the experience of doing it, this is what I am about. Experiencing is the process of living, I want all of it, every fucking drop of it.

Cold Monday morning

The sky is dull, mottled gray, the remaining leaves waving husks, the snow hardened by ice, the feeder is encapsulated and empty, the fun of yesterday is gone, . This is the weather to trim or cut down a tree, the sap has disappeared. Nothing alive but those waving husks.

But I know that everywhere the germ is waiting.

The interior of every seed and bulb has a vibrating molecule, waiting.

Within every tree are the dry tubes and cells, waiting.

Inside every window sits a person looking out, and waiting.

It may look as still as death out there this morning, but we all know that it is just a time, a waiting time, a necessary time.

And there is no stillness in death, there is sadness, loss, grief, there is a point of change: there will be the joy that arises from  sadness so intense that it is beyond tears; but there is no still ending.

Without man God is irrelevant

That powerful notion of Tillich’s came to my mind as I walked out into the cold morning after visiting Bert in the nursing home; there is just a sliver of Bert there today, a thread of the mind unraveled, repeating the same phrase, nothing I said could derail that circular train.

That fundamentalists don’t have the courage to embrace atheism, that atheist don’t have the courage to recognize what is inherent in them, what causes the change from animal to man, that the spiritual example of Jesus is more overlooked than not.  All of these notions and mixed metaphors ran into the raw spot of my soul, that place scratched by the experience of being with a man who was almost not one.

I wanted to write this while still feeling all of that experience, to put down without politeness the insight and profit I gain from this hospice visit; I grow when the callous of my soul is rubbed away, I have an opportunity to see and be a little bit more than I was because of what happened this morning.

And that’s really all that I have for now, time to rest.

The day after visiting a dying man

I visited Bert yesterday, he was anxious and making a lot of noise. I sat with him for about half an hour, trying to have him focus on the present for a few minutes, to confront his fears even though his mind is deteriorating; just doing what a friend can do, offer help, sit for a while, let him know that he is not alone.

Visiting him will not change what is happening to Bert, it is the way of things that his mind breaks down and away; I must never believe that what I am doing will change anything, it is just to be with someone as they go. This isn’t easy to do.

The day after visiting someone who is dying I react with feelings of emptiness, helplessness, I scramble to make sense of something that has no more sense than is living and dying. Visiting a dying person is an intense experience, the next day is the reaction to that intensity.

As I was about to leave, thirty minutes was all I could take, he stopped his anxious rambling to take my hand and thank me for coming, to apologize again for not being all that he wished, he hoped that I would come back again, his smile was genuine. For that smile and recognition I felt joy, and there you are.

I am playing Bach’s ‘Art of the Fugue’, Glenn Gould at the organ and piano; if Bach and Gould cannot fill a mind and life that feels empty nothing can, this is rich stuff.

The intensity of death

I have been wondering why people refuse to respond when I tell them that I do hospice, why they shut up or change the subject? What I am really wondering is what reason I do it, decided to do it?

I have written earlier about going towards that that I fear, but once that is overcome there is the next reason:

Intensity

The focus of being is on this one place, this end place, this boundary between being and the infinite black void; to accompany someone to that line may be about the most intense experience of my life, and of any life that I can imagine. I hope that when it is my turn to go over that edge that there will be someone there to hold my hand, to say goodbye, just to be there.

The strength of that experience makes the affirmation of life stronger; there is more joy at watching the birds at the feeder strive to get what they need to live.

And that may be all that I can put down here at this time.

I am watching a man die

Bert is in a wheelchair, sitting on a pad that sends an alarm if he tries to stand, and occasionally he makes that effort, there is also an alarm that goes off when he comes close to an elevator door. He is set into that chair as a doll is set on a shelf, tucked back as far as possible to prevent him falling off the shelf, he tilts against the right arm of the chair, the effort of sitting upright is to much for his body, the wherewithal to sit straight and dignified has gone.disappeared, that blow to his dignity is sad.

But it is that his mind is leaving the stage that one most notices, that that makes a man human is going away, Bert knows it, he tells me it and I nod agreement. Again I see the frustration as what is left of a mind tries to formulate a sentence, tries to find a word that once was common to it, and now can’t be found; the mind that is left races about in a smaller and smaller area memories and vocabulary now forbidden in their disappearance, frustration gives way to anger, and who would blame him, who would deny him the anger over losing his humanity. The mind plays on a smaller and smaller field, looking to do what a mind does as the resources diminish daily.

I have watched an infant discover his first word, ‘ball’ is the entire universe, he repeats ‘ball’ and laughs each time, it is the laughter of creation, the child is creating a life, a universe, and right now the universe consists of ‘ball’ and ‘not ball’. Soon ‘chair’ will share that universe with ‘ball’ and ‘not ball’, there is laughter and the purest of joy with each step of creation.

It was written a long, long time ago that “In the beginning was the word”, and that is what can be seen in a child’s eyes; the mundane among us argue that ‘creation’ has to do with making stuff from non-stuff, and other stupidities; they can witness creation by sitting with a child as each new word makes his universe explode, with joy and laughter.

From what I know it seems that it took humans about 150,000 years to do words, to make the change from dumb animal to that that creates, a process anyone can witness while spending time with an infant.

Bert’s world, his universe, is collapsing, his creation is in reverse, and he knows it, every person I have known who is demented knows it, and the anger at its disappearance is entirely appropriate, I will be angry too.

Right now I am not angry, I was, but now I am sad, there will be other emotions, but right now I am sad to watch death overtake this mind, this universe;

just as I laughed with the baby as it experienced creation, I have a few tears as this universe diminishes.

Bert’s teeth don’t fit any more, there wouldn’t be much justification in having them redone to fit securely; Bert is sick, he is very sick and won’t be here much longer. As on every visit, his mind summons itself enough to look straight at me, as honest and deep a look as I have ever experienced, as he says ‘thank you’, ‘thank you for coming to see me’, and then I walk away.

It takes a lot from me when I sit and watch this new friend die, I have asked myself if there is anything I can do, the answer is that all I can do is sit beside him, touch his hand, and understand when he tells me that his mind is going, this takes a lot from me, I go home fatigued, will have strange dreams, will find myself in the middle of the night typing this story. I may now be the best friend he has in this world, yet he can’t remember my name, and I am not allowed to display my last name.

The people whose jobs are to take care of the dying grow a callous that is obvious, they are kind and considerate, there is no cruelty, but there is an absence of connection, they have a job to do, and to do it again, and again, and to rejuvenate themselves enough in order to do it again tomorrow. I see this on nurses and aides, on administrators and pastors; at first this callousness made me angry, until I realized that if they were to explore dying with each one of their patients it would destroy them. It is for a volunteer, one without an agenda, to occasionally sit and explore dying with the Berts and Marys. If I ever see that I am growing such a callous I will stop doing what I do.

Dedication of a hospice facility

I have just returned from the dedication ceremony of a hospice unit at a large local hospital.

To say that it is as you would expect, is to say that there is something missing; the decor is Holiday Inn formula, everything soft with gentle curves, everything is bland.

It is the overwhelming blandness of the place that bugs me, from the painted clouds in the overhead lamps to the quilts and tapestries that leave nothing in my consciousness or memory. When the final paragraphs are being written in my life I want Bach’s Brandenburg Concerto 3, 5, and then all the others, at a volume that demands attention; I want an exclamation of life that contrasts with the absolute black void that is arriving.

I don’t think that embracing death, accepting the end means an absence of color, contrast, shapes that demand the attention.

Death is many things, it needs be many things, it is necessary in order for us to define and proclaim life; death is many things, but it ain’t bland.

I had dreaded going to this ceremony, visions of a lifetime of funeral home visits crowded into my mind, the process of packaging and dispatching the someone whom I once knew and loved, intense and heavy memories.