Sunday, January 31
Don was still asleep when I arrived Sunday morning, so I sat
outside his room, reading The Amazing Brain by Robert
Ornstein. He woke up for lunch, and we finalized plans for
selling his car. I hope to get Jim's help on this, since it's
something he does for a living.
Annie and some friends came to visit around
3:00 PM. One of them was Al (of Al and Dierdre, I was to
find out later); the other was from the East Coast and knew Don from
his days with Greenpeace in Boston.
Don and I were playing a game of dominoes in the
main lobby. He beat me (again), even though we'd changed the rules
(again). Don was glad to see the visitors and expressed an interest
in taking a walk, so we went back to his room to get his coat and walker.
As we were leaving the room, Annie asked me, "So, are you leaving now? I
really thought I would have some time alone with Don."
I was a little taken aback, but said simply that I would return the
wheelchair and then the four of them would be "alone." I had
wanted to get another outdoor shot of Don walking along the
bikepath, but when I got back to the main lobby, they were
disappearing down the path toward Ross.
For some reason, I felt I might be intruding if I were to
run up behind them and ask for a picture,
so I headed down the path in the opposite direction.
I also remembered Jnani's comment at dinner last night and thought
this might be the opportunity Annie needed to talk to Don about
whatever issue was on her mind.
About an hour and a half later, I came back. Al and the other
guy were out in the parking lot, apparently banished as well
from whatever confab was going on. They told me Annie
and Don were back in Don's room and that Don was upset,
thinking I had left and gone home for the night. I felt foolish.
I should have told him where I was going rather than just disappearing
like that.
We chatted for a while out in the parking
lot as the sun went down. Then, as our ears grew colder, we went
back inside. Around 5:30, Al went to fetch Annie.
She doesn't have a car and had ridden up with him; now, he needed
to leave. While he was gone, I asked the other man how long he
had known Don. "About 25 years," he said.
"Do you know him as Don or as Vivekan?" I asked.
"Don," he said. "I know some of his other friends call him
Vivekan or V, but he's always just Don to me."
Annie came back to the lobby and we all said good-bye. "I want to
call you later, to clear the air," she said. I said I would be
home Monday and Tuesday nights.
When I went back to Don's room, I apologized for not telling him
where I was going.
"I'm glad you stayed," Don said. "I'd be lonely tonight without you."
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Along the Bikepath
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Thursday, February 4
Don came home today!
I was so excited, I forgot to get a picture of him his first
day home, but I snapped a photo of him in front of the
fireplace in the main room the next morning.
David had done an excellent job of installing railings where
needed indoors and out. Bo was there to greet him when we
arrived from Kentfield. Shankari arrived a little after noon,
and later in the day Jnani and Maha came by. Shankari,
Jnani, and Maha debated whether Don should start outpatient
therapy immediately, two weeks from now, or after a week at
home. I was a little distressed by this.
I thought this had already been settled, but it seemed that
there had been a drop in communication between Don's "medical"
team (Jnani and Dr. Remen) and Don's "home" team. I had had
an inkling of this earlier when I discovered that Shankari
had not been told that I would be staying over tonight. I
had thought the home and medical teams were well-coordinated.
I guess I will have to double-check to make sure information
is flowing both ways between them, especially when it comes
to my weekend visits.
I was also distressed to see them arguing the issue in front of
Don without engaging Don himself. Finally, Jnani did ask him,
he expressed an opinion, and that seemed to settle it. I wish
they had asked him as soon as the issue came up instead of
trying to persuade each other. Don has described the sensation
of being "caught in the social construction of 'disabled.'"
It's particularly painful when people use phrases like, "It's
for your own good," or refer to him in the third person while
he's right in front of him.
Later that afternoon, Don confessed to me that he was very
frightened. Coming home removed the distraction, stress, and
unfamiliarity of the hospital environment, but it also stripped away
any excuse he had for poor performance.
In his own space and home, he was acutely aware
that he was now unable to do things he could easily do before.
"I'm afraid I've become a different person," he said.
"You may be a different person," I said, "but that person has
every right to live and every right to be happy. And you still
have all my love and the love of all your friends."
Between 3:00 and 4:00 PM, Grace, a physical therapist from Marin Home
Care, came by to assess the home environment and schedule Don's
therapy sessions. She raised the issue of having a valid
medical power of attorney. Although I know there wasn't one
from December 11 to December 28, I was under the impression
that a new one had been drafted on December 28 and that Don
had been conscious when he signed it. The therapist seemed to
cast some doubt on this, but perhaps it was just a misunderstanding.
Don said that if another power of attorney form were needed, he wanted my
name on it. However, he also reinterated how grateful he is
that Jnani is handling the interactions with the medical insurance
company. "I would find all those details overwhelming," he said.
Watching Grace watch Don as he went up and down stairs, sat in
chairs, and strolled around outside was nerve-wracking. But he
"passed" with flying colors, and so did the living arrangements,
with the exception of the backstairs, which need to have an
additional railing installed.
After Grace left, Shankari prepared a delicious dinner, and David
joined us for it. The three of us were all pretty much in a
celebratory mood, but Don was quiet. That is, until we brought
out a pint of chocolate Hagen Dasz. That seemed to cheer him
tremendously. After dinner, Don headed upstairs to bed.
I was surprised to find I
was as exhausted as he was, and we soon fell asleep, cuddling.
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Friday, February 5
Shankari woke us at 7:00 AM with Don's medication. Don said
he had slept very well. Instead of the alarms, hallway traffic
noise, and yells of neighboring patients, we had been lulled to
sleep by the sound of the surf and nothing more alarming than
the occasional hoot of an owl.
After a brief breakfast, Don and I said good-bye. Shankari said,
"Before you go, have you noticed anything Don needs to work on?"
He was sitting between us. I looked at him and said, "I notice
you tend to fill your glass too full. It happened twice, I think.
That might be a hazard if you're filling a cup full of hot coffee."
Don nodded.
Before I left, I took a picture of him sitting before the wood
stove in the main room. I gave Shankari a blank medical power of
attorney form, just in case it was needed, and several very helpful
American Heart Association pamphlets for stroke survivors and
caregivers. As my final duty on the way out, I
took a picture of Don's car. Jim and I are working together to
get a good price for it. The photo will be part of an on-line
ad I'm going to place with Classifieds2000. It is, as Don says,
"a really sweet vehicle."
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1. Don at Home
2. A Really Sweet Car
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Saturday, February 6, 1999
The trip over Mount Tamalpias was more treacherous than usual
this evening. I had to brave downpours, fog so thick I had to
creep along at 15 miles per hour, and landslides. When I arrived
at Don's house arouund 8:30 PM, I was dizzy and exhausted.
Sara, Katherine, Jnani, and Maha were there, watching the movie
Fearless. There had been a party earlier in the evening
to welcome Don home, and there was still plenty of food and another
one of Sara's excellent cakes. I had not been told about this
celebration, but perhaps it had been impromptu. At any rate,
I had arrived well after it had ended, and
I was too tense and nauseated to eat.
Jnani informed me that Don had been "cleared for
stairs," meaning we no longer needed to guard him
when he went up and down the flight-and-a-half to his room.
She also told me he had gone to bed a little while before I arrived.
Since that meant he was up in his room alone, I took her to mean that the
three-day 24-hour watch was lifted as well. I was very relieved to hear it.
The movie, about the survivors of an airline disaster,
didn't appeal to my jangled nerves, so
I crept upstairs and into Don's room.
He was asleep, so I lay down beside him, just watching him
and marvelling at how far he had come. Despite the
howling wind and rain pelting the skylights, he was sound asleep,
quietly healing, growing stronger.
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