Sunday, November 14
Don is having repeated episodes of being unable to recall specific
words. I can think of a number of reasons, none of them pleasant.
The worse one is that it might indicate tumor growth in his left
temporal lobe into the areas that control language. Aphasia would
be heart-breaking for this poet. It would break my heart as well
not to be able to play with language as we always have.
Less dramatic would be a consequence of his radiation therapy.
Many people report being "slower" after radiation than they were
before. Perhaps the words and language are still there, but it
takes longer to get to them.
It might also be that now he is off Dilantin, his other mental
processes are quicker. When everything was slowed down, he got
to the end of a sentence without ever over-running his ability to
recall vocabulary. Now, his ability to construct a sentence
outstrips his ability to fill in the lexical slots, and he gets
to a point in his utterance where he has to stop and let the
rest of his brain catch up.
And perhaps, least threatening of all, it is a function of
the drugs he is taking. Thalidomide is a sedative, and both
Prozac and the new one, BuSpar, have sedative effects. When
he goes off them, perhaps the problem will dissipate.
When he goes off them. Keep saying when.
We got alarming news from David this evening. He called us from
Marin General Hospital to say he had had a seizure Friday. He was
at work on a construction site when it had happened. It was a full
grand mal seizure. He had
fallen and fractured a vertebra. They are planning on moving
him to Kentfield Rehabilitation Hospital on Monday. "Quite a
turn-around, huh?" he asked. "Don can visit me in Kentfield
instead of the other way around."
He said they did not know what caused the seizure, but they were
going to do an MRI. He thinks it was caused by coming too
quickly off the Adavan he had been taking.
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Monday, November 15
We have a very busy two weeks coming up. I'm worried that they
will prove to be too much for Don.
Tomorrow, he goes by train up to San Francisco, where Sara will pick
him up and take him to his "energy healing" guy. Wednesday, he has
an acupuncture appointment here in Mountain View. Friday, we leave
for the weekend chorus retreat in Geyserville, coming back as far as
Mill Valley on Sunday (perhaps we can visit David in Kentfield on
the way) to stay overnight with Chris. Monday is the follow-up MRI
at UCSF Medical Center, followed by the return trip to Mountain View
and a visit with my opthomalogist, who will give Don his first
objective field cut test. I cannot believe that it is nearly a year
since the hemorrhage that left him with this deficit, and we're only
now getting an objective measurement of it - something more statistically
objective than the "wiggle finger" test. Also, sometime during this
day, fencers arrive to start replacing my fence. Maybe I can
squeeze in a visit to the house between UCSF and the opthomalogist.
Tuesday, Don takes the train up to San Francisco again to attend
a lecture by Mark Rennecker. I'd like to go with him, partly just
to be with him so soon after his second MRI and partly because I'd
like to meet Mark in a non-stressed-out environment. But that's a
chorus rehearsal night. I hate to miss another one so soon before
the concert. Don will stay overnight in San Francisco (with Sara, I
believe), then take the train back down on Wednesday. If we time it
right, he'll arrive in Palo Alto just as I'm getting out of my
therapy appointment and we can go shopping for Thanksgiving
dinner. Thursday is, of course, Thanksgiving, and we're expecting
about six people over. There's a brief pause in our plans
from Friday to Sunday. I'll probably go shopping for Christmas
cards then (it's the only Christmas shopping I'm planning on
doing this year). Then Monday, June 29th, we go back up to Marin
to see Michael Broffman, Don's Chinese herbalist, and Dr. Angelone,
who plans on giving Don a complete neuropsychological assessment.
He hasn't had one of those since he was discharged from Kentfield.
We have no idea what deficits the July surgery may have left him
with, and nothing meaningful to act as a baseline should Don
need further treatments that may affect the structure or
chemistry of his brain.
All that in the next two weeks. Why am I worrying about whether
Don can take it? I should be worrying about whether I can
take it!
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Tuesday, November 16
Don was able to visit David on his way back from the "energy guy."
He and Sara stopped at Kentfield first, thinking David would have
been transferred there by then, but they said he hadn't arrived
yet, he was still at Marin General. So Sara and Don went to Marin
General Hospital and got to David's room just as he was checking
out. David had decided not to go for the week of in-house physical
therapy at Kentfield, even though the doctors at Marin General
recommended it. He would rather return to his teepee in Bolinas.
Very individualist and even very understandable. But very stupid,
if you ask me. The good news is that the MRI was clean: no
growths or other unexplained "enhancements" in his brain or spine.
It must have been too steep a reduction in his anti-depressants
after all. I wonder if the tapering schedule was something his
doctor worked out, or just something David decided to "do." The
latter seems likely, knowing David. Now that he's had a seizure,
they'll surely put him on Dilantin. Don is going to call him and
give him a cautionary talking-to: no going off Dilantin on your own,
follow a doctor-designed schedule.
When I picked Don up from the train, he said Jenepher was
very disappointed I would not be going with him to Rennecker's
lecture. There was going to be a dinner for Rennecker beforehand,
and people were looking forward to seeing me. I was a little
surprised at this. Why would people be particularly interested in
seeing me?
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Wednesday, November 17
Don came to the office after his acupuncture appointment so he and I
could go to lunch together. He filled me in more thoroughly about next
Tuesday's dinner and lecture.
"Jenephfer is very disappointed you're not coming," he said.
"I'm sorry," I said, "but I have chorus rehearsal."
"Well, it turns out it isn't a dinner for Rennecker after all.
It's a dinner for me."
Aha. Now it makes sense that people would expect me to come with him.
It wasn't just catching a meal before the lecture. It was a sort of
invitation, really, though not a very clear one. Perhaps no one
thought to ask me directly, or they assumed Don understood from the
start and would convey the invitation to me.
But what am I to do? I owe a certain responsibility to the chorus
for the upcoming concert, but I also want to be with Don during this
pre-holiday dinner, where I'm certain many of his friends will be
celebrating his remarkable survival over the past hellish year.
Perhaps this is not so difficult a decision after all. I had
already made up my mind that I wouldn't leave Don all alone in The
City Tuesday night if the MRI results were less than we had hoped.
(All right, all right. I know he wouldn't really be alone.
He would be with lots of friends in the evening and staying with
Sara that night. But we wouldn't be together. For us, that's like
being alone.) Now I needed to commit to the evening in San
Francisco regardless of the MRI. A much simpler plan, really. I
just wish I had had a fuller picture sooner.
Don, Brad, and I went to lunch. Don had another one of those
"missing word" episodes. We were talking about haircuts -
would he like to get one before next Tuesday's events? - and
he mentioned his parents always made him get a "baldie" haircut
when he was a kid.
"The other kids at school were pretty merciless," he said.
"Did your parents give you a reason for the haircut, like lice maybe?" I asked.
"'Because we said so,'" he said. "That's all they needed. As
soon as I was beyond the reach of their authority, I let it grow
down to here," and he gestured to his shoulders. "But it never
really got that far because it was so..."
And there he stopped.
"So...what?" I asked.
"So...," he started, then waffled his hands in exasperation.
"Say the word," I said. "Kinky? Curly?"
He laughed and said, "No," but still couldn't find the word.
We finished lunch and Brad went back to the office while Don
and I walked to the corner of Dana and Castro. Just before
we parted - he for home, I for Printer's Ink - he said,
"Unruly. That's the word."
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Thursday, November 18
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Friday, November 19
We left a little after 1:00 PM for Geyserville and the weekend
Chorus retreat. The trip up was pretty uneventful, despite heavy
rain this morning and occasional showers as we drove up. Traffic
around Santa Rosa was dreadful, as usual, but Don's dread was
different from my own. He had no wish whatsoever of visiting
Santa Rosa Memorial Hospital. He had once said he wanted to go
back there and thank them, but now, every time we passed a hospital
sign along Highway 101, he let out an audible shudder.
The grounds of Isis Oasis, where the retreat was being held, are
very nice. There are several swans, both black and white, and
cages with exotic pheasants and cats in them (though not in the
same cages, of course). Because of the rain, the cages gave off
a stench of wet feathers.
Steve, the Chorus Retreat Coordinator, gave us an end room on
the ground floor of the lodge.
He thought would be quiter and it was. When we first arrived
it was warmer outside the lodge than inside, but we soon found
the thermostat and by early evening it was actually so warm in
the rooms that I opened one of our windows slightly.
There was no dinner service this evening, so Don and I went into
Healdsburg for fast food. I got a hamburger and he got a stuffed
backed potato, and we shared a piece of pumpkin pie. On the way
out of the restaurant, I took Don's hand in mine, as I usually
do, and led him to the exit. There was a group of men in their
thirties or forties having supper and talking in the booths we
passed, and shortly after we went by, I heard their conversation
abruptly stop. There was a brief pause, then a gust of laughter.
Was it on account of us? Perhaps. As Don and I walked to the car,
I thought of what I might say if anyone confronted us. I
imagined the scene. I would leave Don safely in the car, then
walk up to them and say, "Look at my face. What do you see?
Do you see both of my eyes? Well, my friend over there can't.
For him, the whole left side of my face is gone, disappeared.
He has a cancer that's eating away his brain. So I hold his hand
when we leave the restaurant because he can't see the exit.
I hold his hand when we cross the parking lot because he can't
see cars coming at him. I hold his hand because I love him.
When you go home tonight to your wives and your friends and
families, look them in the face. And count your blessings."
Don and I have a word for this: guerrilla brain damage.
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Saturday, November 20
Rehearsals went well, even the Boomwhacker Medley, which I thought
was a stupid idea that would never work. Now I think it'll be the
hit of the show.
Don helped out in the kitchen, though he told me over lunch he
doubted he had a future in the food services industry. He had
been told to cut up some onions. Thinking they were for a salsa,
he chopped them. Nathan had actually wanted onion slices for
sandwiches. On the second bunch of onions, Don's ability to judge
width was shall we say variable. Some of the rings were nice
and thin; others resembled door-stop calibre wedges. Nevertheless,
by the time lunch was over, all but the thickest had been used.
"You have nothing to worry about with this crowd," I told him.
"They'll eat anything."
Saturday evening is traditionally the time for the No Talent Talent
Show. I had decided to enter and use my performance to help the
Chorus get to know Don better. I read three of his poems: "Hello,"
which is always a nice introduction; "Lush," which Don himself
suggested I read; and excerpts from "Life Goes On," the piece that
"Headache" evolved into. It was too long to read in its entirety,
so I did only the last half, skipping some sections, but trying to
capture the essence of what Don was saying.
The guys were amused that I would try to read poetry at a talent
show marked chiefly by outrageousness and camp. Indeed, after each
of the first two pieces there was polite applause, followed by
finger-snapping by a contingent in the back row trying to evoke
the ennui of the beat poets. But when I got into
"Life Goes On," the room got very quiet. Here is what I read:
...a surgeon with a knife
saved my life.
But his competence couldn't save my competence;
couldn't save the me I'd lived so hard to be
all these years
in the belief I needed to be useful
in order to justify my existence.
"What was the point of all that effort?
How will I survive now?" I asked
when finally I was able once again
to think of really stupid questions....
Can I have my old self back just this once?
I promise I'll never
ask for it again.
And what about my cat?...
Doctors with monitors
all that technology
couldn't save my spontaneity;
tubes couldn't feed my curiousity;
though I guess I had just enough left
to wonder how it would feel
to pull them all out....
Prayer and community
held the pattern
when my body couldn't hold it anymore;
but somehwere along the way
there was a case of
mistaken identity,
because it wasn't me
the hospital released,
but some other guy
who was just an example of
a "right brain injury,"
a danger to himself and other....
So, who was it
who didn't die,
and why?
And what would you do with
the gift of a new life
if you had just lost the one
you were used to?
Take it from me: it would be so easy
to be seduced again
by the passion coursing through
a body you've been so intimate with
for such a long time....
But to be a complete experience,
which is what you came for in the first place,
these must be balanced by
at least a glimpse of the pain
that makes the world real.
Truly, the world is so blue,
the world is so beautiful....
And speaking as one who is still,
in spite of it all, drunk with experience
and happily under the thrall of the senses,...
I say to you,
"Go inside now, while there's still an element of choice involved,
and make it beautiful there,
just as beautiful as
the most beautiful place
in the world;
seek the solace you require there.
That way, you'll never lose it.
If I were you,
I'd start today,
since it's easier to put your house in order
while there's still light,
and besides, there will be no tomorrow."
It's a real leap of faith....
But it could be even more unpleasant
if you don't consider it now
and end up--tomorrow,
for example--
clutching in desperation
after the "things"
that tie you to the world you crave--
like your "usefulness,"
or your ideas about your place in the world, or your cat, as each
vanishes in turn
through an invisible hole in the world
hanging somewhere off to your left side,
expecially when you're
already stressed out
about this dying "thing"
and your hands are
tied to the bed anyway,
still clutching (metaphorically at least)
after the "things" that
anchor the elaborate edifice you've constructed around your Self,
adding stability to the facade by their sheer weight....
But a chorus of wailing "things," each anxious to tell its story and
fearful of being nothing special,
drowns out the blessed silence they dread so much.
So you can never sleep, never dream, or just
have to wake up now.
These are the errors of my ways.
I just had to tell you about them
because that's my job now,
the one thing I am still qualified to do.
The scriptures say that
the wise can learn from others' mistakes
and don't have to repeat them all over again.
I hope mine are useful to you
because I don't need them
anymore.
There was complete silence for a moment after I ended, then
thunderous applause. Several of the chorus members were in tears.
I walked off the platform and kissed Don. "Thank you," he said.
"I had no idea you were such a powerful reader."
"It's your words that are powerful," I said. For the rest of the
weekend, people were coming up to Don and thanking him for his
poetry. I'm so glad I got to share this part of his soul with
them.
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