Sunday, September 12
Today, Don and I went shopping for a vase for the flowers John
had brought him last Monday. They were still quite beautiful
and I thought they deserved something classier than a plastic
water pitcher. Besides, I wanted them to look nice for my
Dad and Shirley.
We went to several places: Cost Plus, Crate and Barrel, Z Gallerie,
and, on an impulse, Spirals. There were two vases at Crate
and Barrel that caught my eye, one of them from the catalog I
had shown Don the other day, and another that a saleswoman brought
to our attention. But I really fell in love with a beautiful
piece at Spirals. It had lovely Arts and Crafts lines, a deep
plum glaze on the outside, and a brilliant, rich blue glaze on
the inside. It would look perfect on the bookcase in the livingroom.
I asked Don what he thought of it. He preferred a taller vase
with streaks of light blue over darker blue. However, the
price for that one was $98; my little gem cost "only" $50.
Don offered to buy it for me for my birthday, but I am worried that
he isn't keeping track of his medical expenses and may soon run
through his small salary and the proceeds from the stock sale.
He seems unable (or perhaps unwilling) to get a full accounting
from "The Fund for V" that would let him know how much money
was available for medical reimbursements.
I offered a compromise. I knew the vase I wanted wouldn't be
tall enough for John's large bouquet, so I would have to buy one
of the Crate and Barrel vases as well. "Tell you what," I said,
"I'll buy this one, and you buy the one at Crate and Barrel."
I knew the larger vase
would be less than $25, which seems a more appropriate
range for a birthday gift, anyway.
As we crossed the parking lot at Crate and Barrel, I
took his hand, as I often do in places when I think
traffic might come from unexpected directions. A bicyclist
zipped past us. Don chuckled to himself.
"I remember one time when I wanted to go in to San Francisco,"
he said. "Maha didn't want me to. She said, 'All I can think
of is you stepping off a bus and getting hit by a bicycle coming
from the left.' I call that my 'Jewish Mother' Period. People were
so concerned about my being 'a danger to myself and others' that
they seemed to completely disregard me. It was very belittling.
I felt infantalized, if that's a word."
"Well," I said, "look at who the people were. Many of them
were older women without children. You gave them the chance
to be mothers."
"Except Sara," he said. "I think she wanted to be my wife, not
my mother."
"Most women treat their husbands like large children, anyway.
Which of course is perfectly right. Most men are large
children."
"I remember telling Sara once that I was going to ask Lowenstein
if it was okay to ride my bike. She said, 'Well, what do
you expect him to say? You're going to ride it anyway.'"
This is not how I remembered this story. I remember Don telling
me it was Lowenstein himself who said, "What difference does it
make? You're going to ride it anyway."
"But that wasn't the point," he contined as we drove to
University Avenue. "I wanted
the doctors' advice, not their permission."
"Information on which you could make an informed choice."
"Right. And aside from you and maybe Shankari, nobody
was treating me like I was capable of making a choice. And that
is such a fundamental intellectual activity, a fundamental
part of who you are, I felt like a part of me was being taken
away. How could I get back to being myself if nobody let me
be myself?"
"That's cheifly what I wanted to do," I said. "I think I was
every bit as afraid of you hurting yourself as the Jewish
Mothers were. There were times you wanted to do things, like
go to The City, or bludgeon wood without safety glasses,
that I thought were bad ideas,
ill-advised. And I told you so. But I tried to present it as
advice, and leave it up to you."
"I appreciated that."
"Don't get me wrong. I was still white-knuckled nearly
every time you were out of my sight." I didn't tell him that
I still am. "But I figured you're going to have to explore your
own limits, find out for yourself who this new self is."
"More than anything, that helped me get back to
being myself. The other stuff just seemed to be taking
parts of me away."
"That's something I was afraid of, something I talked to Janni
about the second or third day you were in Santa Rosa. I could
see this large construct of who they thought you were being
put into place, and it seemed to me to be incomplete, that it
was more serving their needs than paying attention to who you
are. I told her, 'I'm afraid that in doing everything to
preserve the community of Vivekan Don Flint we're going to lose
Vivekan Don Flint.' I didn't think any of them, for example,
had the slightest clue about your sexual nature, and you need that
to be a complete person."
"I was speaking to Jnani about that just the other day, when she
was giving me a massage. It's not a libido thing, the desire is
there, but I just don't seem to have the energy. She said I
should tell the acupuncturist to concentrate on the kidney and
bladder meridians."
We walked along University Avenue a while, holding hands
just to be holding hands.
"Life is so precious to me now," he said after a while.
"I think one of the reasons is because
you are in it. I don't know what's in store for me,
but I'm not afraid of it. I'm not afraid
to leave this life. But I don't want to leave you."
I squeezed his hand. "You'll never leave me," I said.
Later that afternoon, Don complained that UCSF hadn't called
him back.
"Yes, they did," I said. "Someone called to tell you to stop
the Thalidomide and contact Prados's office on Monday."
Don disagreed. "No, they said they'd call back this afternoon."
"You mena yesterday afternoon?"
"Yes. Maybe this afternoon."
"It's a Sunday," I daid, "I don't think they'll be calling."
Nevertheless, to my surprise, someone did call, a Dr. whose
name I think is McNichols. She repeated her advice from
yesterday and appologized that no one from Dr. Prados's
office was available over the weekend.
It was while he was on the phone with her that he mentioned
having these symptoms for nearly a week. I was surprised.
I wish he wouldn't keep these things from me. At the very
least, we could have gotten Dr. Hancock to look at him on
Friday.
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Monday, September 13
My Dad and Shirley arrived for their visit around 11:00 AM.
I was very glad to see them. They got to see my house, hear
my plans for the yard, and they met Don. Don floated around
the periphery of the three of us as we traded stories and
I brought him up to date on what I was doing at work. Then
we all went to Glyphic so Dad could meet my boss and Brad.
Then the four of us went to San Mateo for lunch. The motel
where they were staying was in San Mateo. The plan was to
have lunch together, then take Don to the train depot, then
the three of us would spend the rest of the day together.
Don was taking the train to San Francisco so he could then
BART over to Oakland, meet Katherine and Duane, and go to
a poetry reading and chanting session with a Buddhist monk.
Getting him to Oakland by 5:00 PM sort of cut our time
together in half. I had hoped the four of us would be able
to spend the whole day together, right through dinner. But
the plans for Don to visit his friends (and his apartment!)
in Oakland were made before plans had finalized with me and
Dad, so it seemed only fair to honor the earlier commitment.
Dad and I didn't get much of a chance to talk about Don.
I guess I was kind of waiting for some expression of
approval from him, something like, "He seems like a nice
fellow," or even "Good catch." But I have told my father
before that I don't seek his approval for what I do with my
life. At my age, it would be as absurd as asking for an
allowance. Nevertheless, I felt oddly eager for some feedback
on my choice of mate, a little panicked by the lack of any
comments whatsoever,
and a little embarrassed by my eagerness and my panic.
As they left after dinner, I said, "I'm glad you got to meet
Don."
Shirley said, "Now we know who we're praying for."
I guess that counts for something.
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Tuesday, September 14
The first thing Don and I will have to do the day after we get
back from Hawaii is rise bright and early (well, early at any
rate) and drive to San Francisco for his follow-up MRI. Dr.
Prados's office had said they would like the previous MRIs as
well. This poses a bit of a logistics problem, as they are
currently at Stanford. If we're to have them on Monday, the 27th,
I'll have to retrieve them before we leave on Saturday, the 18th.
As that is only five days away, I thought I ought to start trying
today.
So I called radiation therapy and explained the situation: I would
need Mr. Flint's MRIs. After being reassured that I had his power
of attorney, they told me I would have to talk to the film librarian.
They didn't give me her number but forwarded my call. I got a
voice mail machine which asked me to leave my name, phone number,
and request. I was assured my call would be returned. I left
the information. This was about 10:00 AM.
Around 4:00 PM, I still had not heard from the film librarian. I
meant to call again before five, but it was 5:30 before my work load
cleared up and I figured it was too late then.
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Wednesday, September 15
Don went with me to work, then took the train into The City.
He intends to go to the office and then to the library at UCSF
to do some research. this is one of those occasions when I
wish he would stay home and rest, but he seems driven to
accomplish something. It's what my Dad called "the will to
win, the competative spirit."
I tried again this afternoon to get the MRIs we would need on
the 27th. This time, I did get through to the librarian herself.
However, when I explained that the MRIs I was interested in were
taken at Marin General and UCSF, she said, "Oh, we don't keep
films taken outside of Stanford in the library." I asked her
where she thought they might be. "At radiation therapy," she
said.
So I called radiation therapy again. After some confusion about
who I was and why I wanted someone else's MRIs, the receptionist
there put me in touch with a nurse. "Mr. Flint's films are not
down here," she told me. "They were checked out by neuro-concology
and weren't returned."
I remembered now our meeting with Dr. Peterson. Since it was
about 4:30 in the afternoon, I thought there might be a good chance
of catching her or her nurse, Deborah, on the phone. I had
radiation oncology transfer my call to the neurology clinic.
After several rings, a voice machine tape answered. It told me
to call during regular office hours, but did not state when those
hours were. Since I thought I was calling during regular
office hours, I left a message to that effect and hung up.
I then called Deborah, Dr. Peterson's nurse. Since her number was
different from either Dr. Peterson's or the Neurology Clinic, I
thought I might be able to get ahold of her directly, or at least
leave her a personal message that wouldn't be filtered through the
Neurology Clinic's answering machine (which might have taken
umberage at the tone of my last message).
Deborah's number rang a few times, then the I heard a voice. It
was the voice mail answering machine again. I said, "Not you again!"
and hung up.
I then called the Stanford Hospital Operator. I told her I was
trying to get ahold of someone - anyone - in neurology. She said
she would transfer my call. This time, someone did indeed answer
the phone in person. "Hello," she said, "Lucile Packard Children's
Hospital."
"How very surprising," I said. I explained I was trying to get ahold
of some MRIs.
"What kind of films are you looking for?" she asked.
"They're of my partner, Don Flint, who is undergoing radiation
therapy there."
"Oh, you want UCSF," she said. "We only have children here."
"No, you don't understand. Mr. Flint's MRIs are in the neurology
clinic at Stanford. He's getting treated at Stanford."
"Just a minute," she said, "I'll transfer you."
The phone did what all phones must, and when the voice of the
answering machine repeated its unhelpful message for the third
time I found I had to agree with it. By now, it surely was past
regular business hours. I stated my request as politely as I
could manage, then hung up the phone and gave up for the day.
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Thursday, September 16
I had a therapy appointment this morning, so afterward I went
to Stanford to see if I might accomplish in person what I had
failed to achieve telephonically.
When I arrived at the Neurology Clinic, all the receptionists
were busy, so it took a while before anyone could help me.
"Can I help you?" asked a bright=looking woman in a yellow sweater.
"I hope so. I'm here on behalf of Mr. Don Flint. I'm looking for
his MRIs so we can take them to UCSF for a consultation."
"And your name is?"
"Lou Ceci."
"Date of birth?"
"This coming Sunday, but it's Mr. Flint's
MRIs I'm looking for, not mine."
"Are you his guardian?"
"I'm his partner and his medical power of attorney."
"Okay then. You'll have to get the MRIs from the film library."
"They don't have them because they're from UCSF, not Stanford."
"Well then, radiation oncology has them."
"They did have them, but they were checked out by Dr.
Peterson and she didn't return them."
"I don't think Dr. Peterson is here today."
"How about her nurse, Deborah?"
"I'll check." The kind woman disappeared for a while, then came
back with a distressed look. "I'm sorry," she said, "but neither
of them are here. But don't you worry. We'll find your MRIs."
I decided it was fruitless to correct her, so I said, "Thank you,"
and took a seat.
I started reading an interesting articles in an old issue of
Smithsonian. The helpful woman returned in about fifteen
mintes, looking
pleased. "Mr. Ceci?" she said. "We found Mr. Flint's MRIs.
They're in radiation therapy."
Of course they are, I thought. I said,
"Thank you," then resumed reading the Smithsonian.
It was a very interesting article.
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Friday, September 17
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Saturday, September 18
We arrive in Honolulu, where Jim picks us up and drives us to Diana's
place in Kailua. She has left us the key to her apartment under a
potted plant beside the door to her studio apartment, which is attached
to the house her landlords live in. Don takes the key from under the
flowerpot, but it is so rusted that when he tries it in the lock it
bends then breaks off. Jim decides to take us for lunch at a nearby
coffee shop where we'll wait for Diana to get off work (she's taking her
hospice volunteers on a tour of a mortuary).
We have sandwiches and coffee at the shop, and when we return to
Diana's, she is home. Diana's apartment is one room. There's the
entrance, with the bathroom to the left and a walk-in closet to the
right, and a short entry hall. Once through the hall, the room opens
out with a kitchen to the left and dining table to the right. The room
narrows in the middle, and that's where the bed is, against the outside
wall. Past the narrow part, the room opens out again, and there Diana
has set up her bookcase, CD player, and two low altars.
After hugs and kisses and hellos, Don lies down on her bed and I lie
down beside him. Although Don is looking very tired to me, I'm the one
who actually falls asleep while the three of them chat.
When I wake up, Jim suggests we all go down to the beach. Diana says
she'll join us later after she makes a phone call. It's just three
blocks to the beach, and soon we're all stretched out on the sand,
waiting for Diana. After about twenty minutes, I decide the water looks
far too inviting to turn down, so I strip down to my swim suit
(actually, just a pair of gym shorts) and step in.
The water is colder than I expect at first, but with the steady
windward breeze blowing, I soon appreciate that being immersed in water
is much warmer that being splashed by it. Pretty soon I'm out swimming,
laughing, playing with the surf. Jim joins me. I mention to him how
the ocean is a lesson in humility.
"I know what you mean," he says.
I stand up in the water as a modestly large wave begins to break in
front of me. "I don't want the future!" I shout, pushing it away. It
knocks me over. I stand up again, laughing. "Stay back!" I yell. "No!
No!" Wave after wave knocks me down and washes over me, and I rise up,
laughing.
Don doesn't go in the water, saying it feels too cold for him. We stay
on the beach for over an hour, but Diana never joins us. When we return
to the apartment, she is still on the phone. "Are you guys back
already?" she says.
We go to dinner at a local Thai restaurant. There, I discover that
Diana has a second job. In addition to her role as volunteer
coordinator for the hospice, she is also a minister and has already
performed one wedding ceremony. She has another scheduled for tomorrow
and a third later in our visit. I turn to Don.
"Do you know what I'm thinking?" I ask in my best Pinky-and-the-Brain
voice.
"No. What?"
"If the State Supreme Court gets off its can and makes a final ruling in
Baehr v. Miike, Diana could marry us."
Okay, so it wasn't the most romantic of proposals. But it's something
we've talked about before.
All four of us agreed that it was an idea worth "putting out there in
the universe and seeing what it does with it." Diana said she'd make
inquiries about what would be needed when she performs the ceremony
tomorrow.
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