December 3 - December 9, 2000

December 3 - December 9, 2000

Sunday, December 3
Don had his memorial at Commonweal this afternoon.

I don't remember all the people who were there, but the attendees included Rachel Remen, Michael Learner, Jenepher Stowell, Jnani Chapman, Waz Thomas, Annie Linton, Matt and Patsy Zwerling, Virginia Veach, Sara Reingold, Bruce Feldstein, Daniel Rybold, and many others whose faces I remember being part of our world since word first went out about Don's hemorrhage, nearly two years ago.

We followed a very simple ceremony. After opening remarks by Michael, each person who wished to spoke a little, then took a bit of ash from the urn I had brought and scattered it over the bluff into the light of the late afternoon sun. Some didn't speak, some did their own special way of "scattering": as a joyous flinging into the air, as a dance, as a simple spreading, as a prayer. Some ash was also planted in the earth beside the stone "chair" that overlooks the ocean, and some was scattered in the little chapel.

I'm glad these folks got a chance to put a shape to their farewell. I am also glad that Don has some presence here on the Bolinas peninsula. One of the people who spoke, who took over his duties as ISHI administrator, talked about learning her job from Don. One day, as they were walking through the pine trees from one building to another, he bent down and touched the earth and said, "I love this place." Now he is part of it.


1. Rachel and Jenepher

2. The Folks at Commonweal

Monday, December 4


Tuesday, December 5


Wednesday, December 6
Leslie from the office was spending the night at our house so she could attend a seminar in Palo Alto the following morning. I gave her the master bedroom and set up the foam pad in the meditation room. It was a snug fit, but I liked the intimacy. I felt like I was spending the night with Don.

I had a short, interesting dream. It took place entirely in the meditation room. I was sitting in the middle of the room. Over in the corner where the lamp is a woman was burrowing through a stack of papers, sorting them and discarding some. "Leave those alone," I tell her. "This is my house. Something sacred has happened here." I turn around and Don is sitting in the opposite corner. He is relaxed, smiling.

I wake from this dream very pleased. Even though Leslie leaves tomorrow morning, I decide to sleep in the room two more nights.

Thursday, December 7
I mailed off letters to Dr. Remen, Jnani, and Dr. Doherty, asking them which one of them put the note in Don's chart that said, "Mr. Flint has a friend, Lou Ceci. He is not to be given any medical information." It was that note that kept me from finding out the answers to Don's questions nearly two years ago, and kept his case worker, Debbie, from giving me any helpful information that we might need as a couple.
"I'll have to talk to Dr. Remen first," she had said, and then afterwards wouldn't tell me anything.

My second night in the meditation room produced another dream, but this one had a more ambiguous in feeling.

I am walking down a street in a residential neighborhood. I am with a small group of people, perhaps my friends. As we pass a front stoop leading up to an apartment building, I see Don sitting among some people who are lounging there, passing the time of day and watching passers-by. We make eye contact. He gets a puzzled, concerned look on his face. I think perhaps I should go up to him and speak, at least say hello, but I hestitate, worried that I would be barging in on his friends. He opens his mouth wide as if to speak, but no words come out. He looks distressed, his mouth twisting with the effort, but I feel I should keep back. My crowd of people moves on and I lose sight of Don among the people on the steps.

The image of him trying to speak haunts me all day.

Friday, December 8
My last night in the meditation room. I'm wondering if my dreams will clarify the disturbing image I saw last night. Was Don in pain as he was dying? Was he trying to speak to me then and couldn't? Did he feel alone, abandoned? I told him he would never leave me. Did he feel I had left him? I wanted to know how it had been for him. I wanted to know if there were anything I should have done.

The dream was brief but intense. I was the one with the brain tumor. I was alone in the house of a friend - one of Don's female friends, in fact. Not someone I knew well, not someone whose name I could remember.

I was alone and I knew I was dying. It was coming on rather quickly. I could tell I was about to lose consciousness, and was already having trouble reading words and speaking. I found I could not walk, but was on the floor, crawling towards the telephone. Why the telephone? Oh, yes. I was going to call 911. But what would I tell her? What could I say to the operator? I knew I would probably sound incoherent as my speech muscles gave way. I managed to dial the number and someone did answer, but how could I describe what was happening? And where I was? I thought I could make out the name of the person whose house I was in on the binding of a book. It was a great relief, but I was in a race to be able to read it off while I could still understand letters and speak. I wondered what it would be like to die there on the floor.

I woke up. "Okay," I said to Don's picture on the altar. "I don't want that again. I'll stop poking around."

Shortly after he returned from Kentfield, Don rented the movie Jacob's Ladder. He was fascinated by the central message of this film: if you refuse to accept your death then all those around you gradually turn into demons, trying to frighten you away fro a life that is no longer yours. But if you accept your death, those same demons become angles, showing you the way into heaven.

I have not accepted Don's death. I still grasp at things I should have done or should have known. I still punish myself for spoiling his birthday party, what was supposed to be our wonderful weekend in Bolinas. I still wince as I think of dragging him from stand-by list to stand-by list in a futile attempt to get us to Hawaii because I had insisted on a later pick-up time. I think of the couples' retreat we missed because of that. And I still wonder what his last hours were like, even though I was with him the entire time. But was he frightened? Did he feel alone?

Perhaps he is telling me that some things are always private and cannot be shared, even between two most intimate souls.

If the experience was anything like my dream, I now know I don't want to know it. If I keep looking for a way to save the past from itself, I will stay there. Worse: I will be there. If I look for suffering, I will see hell and live in it.

So, I have to wean myself of this, too, and face the inevitable, the memories that become, in the end, only memories. They cannot take the place of a life.

Saturday, December 9
According to the USPS tracking website, all the letters have been delivered. I had talked to Leslie the night she stayed over about my intention to write the letters. She thought no one would respond. I would soon find out if she was right.

It didn't take long. Dr. Remen was the first. She sent her response by e-mail a little after 8:00 PM Friday night. It showed up in my mailbox later that night, though I didn't read it until today:
Dear Lou,

Goodness, this is a strange thing. No, I did not write the note
and did not place it in Don's chart.

Perhaps some of the legalities and rules of medical chart keeping
can help us figure this out. These legalities/ rules are constant
for all hospitals.

A chart is maintained and compiled only by employees of the
institution who have responsibility for the patient's care. Being
that a chart is a legal document, access to it is restricted. No
one is allowed to write into it directly unless they are a
professional employee of the health care institution that is
caring for the patient.  Those who could write into Don's chart
would be any of his therapists, his social worker or placement
worker,the  physicians who are directly responsible for his care
or any medical consultants brought in by those physicians. A
doctor must be either on staff, or have attending priviledges in
order to write into a chart.  (For example: I could not go into a
hospital and write in a patient's chart even if I had been caring
for the patient before he was hospitalized unless I had been
"vetted" by that hospital and awarded attending priviledges
for that hospital. If I do not have attending priviledges,
a doctor who does has priviledges assumes full responsibility
for my patient's care while he is hospitalized.)

Also, no one other than a professional employee of a hospital can
add anything to a chart. So we know that whoever wrote the note,
it was put into the chart by someone who worked at Kentfield.

On occasion, a letter written by a family member might be put in
a chart by an employee, but that letter must be a complete legal
document....ie it must be signed and dated. It is not common for a
letter from a family member or friend to be included in the chart
but could happen.  Usually the employee who inserts the letter
will write a dated note directly into the chart itself stating:
Mr Jones' wife sent this letter and asked that it be included in
Mr Jones' chart and then sign this explanatory note themselves.
Most commonly, letters that are included in the chart come from
the doctors who have cared for the patient in the past and have
written their conclusions on their letterhead or are summary
letters from doctors at other hospitals who have referred the
patient. All these are of course legal documents and are signed
and dated.

So it is very odd for an unsigned, undated note to be in a
patient's chart.

Is this note written on a separate piece of paper? Or is it one
of a series of chart notes written day after day directly into
the chart on a the same piece of paper as other chart notes. If
it is written on the same piece of paper as other chart notes it
would be highly unlikely that anyone who was not an employee of
Kentfield would have written it and it could have been written
by any of Don's doctors or his social workers or therapists.
If it is on a separate piece of paper and not signed, I would
think that only a hospital employee would have written it as an
unsigned piece of paper written by someone not employed by the
hospital has not legal validity at all.

I do not recall Kentfield's policy for the sharing of patient
information .......in many hospitals only immediate family
(brothers, sisters, children), married couples or those who
have legal guardianship are told the diagnosis or prognosis
of the patient or the results of tests and this usually done
only by the physician(s) who have direct care of the patient.
Friends are only told how the patient is doing that day (patient
status)...i.e. he is awake, he had a good day, he is not aware of
people around him, he is in the recovery room and the like. If
this is the case at Kentfield, the note suggests to me that it
was written by a hospital employee to remind other employees of
the specific hospital policy on the sharing of information.

I seem to remember that Kentfield was quite stiff about sharing
information. I recall that information was only shared with me
by Dr.	Doherty (who shared what the therapists had concluded
in  their weekly meeting on Don's progress) after she had seen
for herself the signed paper documenting that I had legal power
of attorney.

So, a very strange thing....I hope some of this information is
helpful in figuring this out.

Blessings,
RACHEL
So, according to Rachel's view, the note was an outgrowth of Kentfield hospital policy strictly enforced by Dr. Doherty "after she had seen for herself" the document giving Dr. Remen Don's legal power of attorney for medical decisions.



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© 2000 Louis Flint Ceci / ceci@glyphic.com