Sunday, March 21
Sunday started out lazy again, but it was quality time.
We rolled out of bed in time to head up to Oakland, where
Ram Das was going to speak at the "First Church of Religious
Science." Before we left, Don helped me take down the
Christmas lights. Don had helped me put them up the weekend
before his stroke, and I had vowed not to take them down until
he could help me do it. One more bit of magical thinking had
done its job and could be retired.
Ram Das's announced topic was on the process of aging,
but Don's real interest was in hearing from
him as a stroke survivor. Ram Das suffered a left-hemisphere
stroke in 1997, and it left him with right-side paralysis and
aphasia. Don admired Ram Das's work and wondered how the
stroke had affected his abilities. I think he was also looking
for confirmation and hope, proof that someone could suffer an
accident as serious as his and still make an important
contribution to the world.
As we had hoped,
the first half of the talk was mostly about the stroke,
the aphasia, and the insights they had given him.
His aphasia was literally a
silent partner in the dialog that we listened to, sometimes,
as he put it, "surfing the silences" as he rummaged
through the wardrobe of his mind to find the words to dress his
concepts.
He made several important points about how it feels to
have your body and the public projection of your self suddenly
yanked out from under you,
only to be replaced by a social construct
called "stroke victim." Some of the things he said:
- I don't identify with this vehicle, my body, or with the
software that runs it, the ego. What is left? The
soul.
- Hospitals and doctors aren't equipped to deal with souls.
It's not their job, really. Hospitals and businesses -
souls don't go there.
- Being a helper is a power role in our society. 'I want to
be a compassionate being, so I'm helping you.' Well,
help goes both ways.
- I have a whole caseload of therapists. Boy, I tell you,
they need work.
- They did not see me. They did not see a soul. They saw
a stroke victim. Their minds - (long pause) - that is a
tough terrain to live in.
Afterwards, Don got a moment to speak to Ram Das personally.
At first, he was eager to speak to him, but then, seeing how
many people were around him, he lost hope. He wanted to say
something personal, and was beginning to feel that even the small
group around Ram Das was too public. "Wait a moment," I said,
"I think he'd be glad to talk to you." A few moments later,
I caught the man's eye. "I'd like you to meet my friend, Vivekan,"
I said, and Don stepped forward and bent over to speak in his
ear.
I couldn't hear what they were saying, but Don must have told him
that he, too, had suffered a stroke. Perhaps he told Ram Das
about learning to let go of his "constructed selves."
Ram Das brightened, as if meeting a fellow traveler,
and said, "It's a wake-up call, isn't it?"
He told Don to talk to his personal secretary and get his address
from her so Don could write to him. Then he reached out and
carressed the right side of Don's head. Don was very moved by
this gesture.
Sunday evening, we went to a birthday party for Mike, a friend
of mine who is celebrating his 48th. Since it was also Oscar
night, the television was on in the next room, and we cheered
and jeered our favorites. There were eight people, including
Bob, the host, and John and Frank, whose open house I had gone
to earlier this month. Don had met John before, but the other
people were all new to him. Nevertheless, he did a pretty good
job of participating in the conversation.
I had a moment of concern when Don went back out to the car
to get the pills for his eight o'clock medication, but he found
his way to and from the car in the dark with only general directions
as guidance. I think his persistence pays off in spatial reasoning
tasks like that. However, when we went to leave, he walked into
the hallway closet instead of going out the front door.
"Ooops," he said, and immediately turned around. He made
a joke about "not going back in there after all these years,"
but it was clear he had mistaken where the front door was,
despite having used it only an hour earlier.
We drove back to Bolinas, talking about Ram Das and whether or
not he would respond to the letter Don planned to write him.
We took the route over Mt. Tam, which I find much less
frightening at night if Don is with me.
The weekend had been very satisfying for both of us, and I
felt as if our lives were beginning to fit together well.
Before his stroke, Don and I kept pretty much
separate social calendars. It suited our sense of independence
and also reflected a certain unwillingness to depend too much
on each other's participation. I think that has
changed, now. My going with Don to the jazz concert and to
Ram Das's talk made me a participant in Don's world, and his
coming to FrontRunners and Mike's party made him a participant
in mine. And they were both occasions when the main topic of
conversation was not Don's health or prognosis. It was, in short,
as near a thing to normal and a wonder in itself.
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Monday, March 22
After the morning therapies, Don sent me home. It was only two
o'clock in the afternoon, but I was glad to have the rest of the day -
and my "weekend" - to myself.
The degree to which Don is expressing and exercising his
independence is very heartening, and that includes his being
able to tell me he doesn't need me around all the time.
The weekend's experiments in "real-time spatial reasoning" -
getting from Sausilito to the Presidio, and from there to
Mountain View by previously unseen train and bus schedules -
had gone very well. So had our attempts to reintegrate our
social lives and return to something very like a normal life,
to have, as Don once put it, someting besides his brain to
talk about. He said he'd like to come to Mountain View more
often, so we made plans for him to do so again next Saturday.
As we parted, he said, "I'm missing you already, but I'm
already looking forward to next weekend." Me, too.
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Tuesday, March 23
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Wednesday, March 24
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Thursday, March 25
I came home this evening to find a message on my answering
machine from Maha. She said that, since she would soon be
leaving for Arkansas (and eventually Ecuador), and Jnani
would be leaving for a week in Washington, it would be a
good time to get "the V team" together and solidify who was
going to drive Don where on what day. She said that the
meeting would be in San Rafael, tomorrow, at 7:00 PM.
I am in total agreement that Don's schedule needs to be
solid and, in my opinion, fixed, and I certainly wanted to
be in on any meeting that might involve changing it or
that might need my input on when I would be available. But
I sure had wished for more warning than 24 hours. What will
I tell my boss?
Nevertheless, I called back and said that of course I would
make the meeting (I would have to figure out how to make up
the work hours I would miss later). Maha expressed special
concern that Don's follow-up angiogram get scheduled. I
expressed to her my feeling that it was way over due, but
that I seemed powerless to affect its scheduling. I repeated
what I had said to Dr. Remen over two months ago, that the
greatest risk for a second stroke was in the first year, and
that the best preventative for that was finding out what the
circulatory system of the brain looked like now that the swelling
has mostly subsided. "It doesn't take three months to read a
pathology report," I said.
After talking with Maha, I called Don. Originally, he had planned
on spending Friday night at Annie's in The City, but as we were
now both going to be in San Rafael Friday night, didn't it make
more sense for him to come back to Mountain View with me?
"I don't want to upset Annie," I said, remembering how she had
insisted on having Don to herself during that visit to Kentfield.
"She'll get over it," Don said. "Besides, there will be other
over-nights."
"Should I pick you up in The City on my way to San Rafael?"
"No. Annie and I are going to Bart over to Oakland, and Jessica
is going to pick us up there and take us to the meeting. Sara's
cooking dinner for us."
That sounded like a rather convoluted plan, but it would get the
three of them there in time for dinner at Santa Sabina around
6:30. I wasn't planning on leaving until 5:00 PM, in order to
minimize the amount of time lost at work. Since I would be going
through the city during rush hour, I couldn't guarantee when I
would arrive at a pick-up point, nor could I guarantee arriving
by 7:00 PM, let alone 6:30. So we left it at that: Don, Annie,
and Jessica arriving by car, me arriving separately (and probably
later), Don negotiating with Annie so he could come home with me.
No one's life should be this complicated, let along someone
with a brain injury.
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Friday, March 26
Mark is the most thoughtful employer anyone could hope for.
When I arrived at work and explained why I would have
to leave at five o'clock, he said,
"Won't that put you in the city right in the middle of rush hour?"
When I said yes, he said, "Don't be silly. Leave here at 3:00."
I immediately called up Don and told him I could now leave work
earlier than expected, pick him and Annie up, and get all of us
to Santa Sabina in time for dinner.
Don thought this was excellent news. As it turned out,
Annie was having dental work done and didn't feel like coming to
the meeting anyway, let alone having an overnight guest. There
remained one hitch: Jessica's plan to pick Don up at the MacArthur
Bart station in Oakland. He had already left her
several messages, trying to confirm the arrangment,
but had not heard anything back from her. He was going to try
again to contact her to tell her the change in plans.
Those attempts proved futile. He never got ahold of her in person,
and he never got a reply message from her.
We found Dominican College in San Rafael, and after asking around
a bit and Don looking at a map, we found the Santa Sabina center,
arriving a little after 6:00 PM. Sara acted kind of odd around
Don. As soon as she saw him, she wanted to take off his jacket
and take his day planner from him. I think I'm putting that
precisely: she didn't want or ask him to remove his jacket himself,
nor did she ask him if he wanted to set down his day planner.
She took them from him, as if it were a requirement of his being
there. It felt rather odd to see her treating him like a person
with no volition.
The dinner she prepared was excellent. She cooks for the entire
retreat center, and what we had was what was in store for the
100 or so retreatants.
Jnani, Maha, and Katherine arrived sometime later.
The scheduling meeting, scheduled for 7:00, started about 7:15
in a prayer room across from the chapel. Jessica was not there,
nor were Shankari or Bo, both of whom were expected. Again, I
got the feeling that "the V team" was not really very cohesive.
Did the other members feel "jerked around" by a meeting that had
been unilaterally called without consideration for their schedules?
Had they been informed at all? I had to let these thoughts simply
come and go, knowing I would probably never know what really
happened, and that I was not in charge of everything. It was
my simple duty to be as reliable as possible about my availability.
Maha brought up the subject of Don's angiogram, asking for
clarification on what was holding up progress.
Jnani explained that Dr. Remen, who at first did not think the
likelihood of micro-vascular disease was sufficient to hold up
testing, was now "on board" with that precaution. Jnani said that
Dr. Remen has "written letters" to some experts in that field, but
had not yet heard back from them.
This was almost more that I could bear. "Written letters"? What
the hell did that mean? Were we waiting for correspondence from
these people before proceding? Why? What could they say in
a letter that could possibly be more important or relevant
than what doctors looking at the pathology report?
Months ago, I had said to Jnani, "I'm afraid that in trying to
keep 'the community of Vivekan Don Flint' together, we may lose
Vivekan Don Flint." This seemed to me a perfect example of what
I had feared: in an effort to appease everyone who felt he or she
had a special insight into Don's condition, we were delaying the
one diagnostic that might warn us of an impending catastrophic
second stroke. I had to say something.
"It doesn't take three months to read a pathology report and
come to some conclusion," I said. "I am worried that, in trying
to avoid a miniscule risk, we are putting Don at even greater
risk. The greatest risk for a second stroke is in the first
year after the first stroke. We're now more than a quarter of
the way through that first year, and we still don't have a
second angiogram. We need that information now, when it can
still do us some good."
I knew I had just said
what several people had told me I must never say in front of Don:
that a second stroke was a distinct possibility. But it had to
be said. The risk had to be put out there in the open, not
kept as special, secret knowledge.
But I had no idea how frightening this knowledge would be to
Don. I was in such a high dander that I didn't notice Don
drawing into himself, growing very quiet and still. But
Jnani did notice.
"V, are you all right, sweetie?" she asked. He didn't respond.
"You're looking kind of overwhelmed right now," she said.
"Are you okay?"
"I'm frightened," he said in a small voice. I felt like a clod.
His right hand was trembling. When he looked up at us, he had the
face of a child. "The one thing I fear the most, the one thing
after seizures, is another stroke. And you're saying that could
happen?"
"We're saying we don't know," Jnani said, "but the test could help
us determine the risk."
"What could you find out? What could you do?"
"That's all for another time, V," she said. "We don't have to
worry about that now."
I took his hand.
"Right now, we need to focus on what we can do here, today,"
He calmed down, and we got down to the business of his car rides
and appointments.
We went through the schedule day by day through April 21, agreeing
to meet again on April 17 to plan the next few weeks. When we had
a first draft done, Sara went to Xerox it so we each could have a
copy. Then the folks decided to take a break and headed off to
the kitchen. I stayed behind with Don as they left the prayer
room.
"I'm very sorry what I said upset you so much," I said.
"What are the probabilities?" he said, cutting to the quick.
"I only know what I've read," I said. "I've read that 50% of
stroke victims suffer a second stroke in the first year. Now,
the vast majority of those are embolisms and blockages, not a
hemorrhage, like yours. That's because of plaque in the bloodstream
or heart disease, which we know isn't the case with you. So it's
not as terrible as it sounds."
"It sounds terrible enough," he said.
"I'm sorry," I said. "I guess I shouldn't have said anything."
"No," he said, and he gripped my hand and shook it for emphasis.
"No, you were right. I need to know these things."
The meeting reconvened after that, but it was mostly a recap of
the schedule. Sara decided against Xeroxing the schedule right
then, saying she would get copies to us at Parusha's birthday
dinner on Sunday. Maha told Don that she would personally contact
Dr. Forrester and find out what needed to be done to get the
angiogram scheduled. She said she would call on Monday with
what she has found out.
The meeting broke up and Don and I walked out to the car for the
drive down to Mountain View. It had gotten chilly. As we
approached the car, Don called out, "I see it!" "Find the Car"
had become a bit of a game and a joke with us, especially after
several mistaken attempts by Don to get into the wrong car. He
has said that anything big and boxy looks like my car.
"Ooo, on your left, too. Good job," I said,
mimicking the patronizing encouragment of the Kentfield staff.
"And at night, too" he added.
We got into the car.
"Should I hold back?" I asked. "When I have information like
those stroke statistics. Are they worth it? Or should I
not say anything?"
"I'd rather know," he said. "It scares me, but I'd rather know."
"Good," I said. "I don't think I could keep a secret from you,
anyway."
He looked at me and took my hand and kissed it.
"Good," he said.
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Saturday, March 27
We started the day by going to the FrontRunner's coffee hour
following their morning Fun Run. We skipped the run part,
though, making us "FauxRunners." I was eager to see this
month's issue of the Tides, our club newsletter,
because has an ad for Don's Explorer in it. I am growing
concerned that the car hasn't sold yet.
We spent several hours at my office while I worked on software
and Don worked on cognittive exercises Angelone had given
him. He said he found the quiet atmosphere of the office
very conducive to working on the exercises. I showed him the
games Brian had e-mailed me, and we agreed that two of them
might be very effective at training memory and motor skills.
He thought Angelone might also be interested in them. I
agreed to e-mail them to Don as soon as I checked them for
viruses.
Later that afternoon, we headed back to Bolinas. The day
was beautifully clear, and on the road down from Mount Tam
the vistas were so extraordinary that I had to stop and
get a picture. Of course, I put Don in the picture since
he, too, is an extraordinary sight (well, he is to me).
Then he took a shot of me. I think his is the better one.
It's better framed, and you really get a sense of the panorama,
including the cloud-like outline of Point Reyes on the horizon.
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1. FrontRunners Coffee
2. Don and I as a Couple
3. A View of Stinson Beach
4. Don's Picture of Me
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