Sunday, March 14
Sunday started rainy and stayed that way. No matter. We
made our own fun.
We headed out to Mill Valley to meet Chris for a late breakfast/early
lunch. Don told me Chris has just turned 50. I don't believe it.
When we met up with him at the Sunnyside Cafe,
I congratulated him on how good he looks. (Chris and his good
looks have been a frequent topic with Don and me.) Over breakfast,
we discussed plans to meet him in Utah sometime this summer. He
will be on a bike trip, Don and I on a motor trip. Don has said
he will show me the Canyonlands, a part of the southwest I have
always wanted to see. Don also said that, in light of a possible
summer trip, perhaps we should postpone the spring trip to Hawaii
we had tentatively planned
to the fall, when the rates would be better. I readily agreed, and we
talked about making it part of my 49th birthday celebration in
September.
After bidding Chris good-bye, we strolled over to the movie theatre
to see if Shakespeare in Love was still playing there. It
was, so we went to the noon showing. Don enjoyed the dialog and
the rather complex plot, with all its hidden identities,
gender-bending, and Stoppardesque word-play (some of the puns were
insupportably funny). The only drawback to the experience was
that it threw off Don's cycadian rhythm. For the rest of the day,
he thought it was about 5 hours later than it was. I think the
experience of sitting in a darkened theatre triggered the notion that
it was late in the evening, and although he knew perfectly well
that it wasn't, he kept saying "it feels later."
That evening, we played the card game
Fluxx,
in which the rules are printed on the cards and
change as you play them. He caught on quickly enough and beat me
on the first game (though I beat him on the second). Afterwards,
I read him the middle third of Under Milk Wood. As I
expected, he loves Thomas's use of language and is really
enjoying my characterizations and impromptu tunes. I get a great
kick out of reading to him.
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Monday, March 15
I met Dr. Angeloni for the first time this morning. Don
introduced me to him as his partner, a term we're both using
more and more. Dr. Angeloni spent most of the time talking
to Don about the upcoming regimen of exercises and what he
could expect out of them. He had very encouraging things to
say. For starters, he said, "Someone talking to you on the
street would not know that you had had a stroke." That was
a measure of how well and how much Don has recovered so far.
He was also very realistic, impressing on Don the that work
he needed to do was at least four hours a day, every day,
and that Don should not slack off on any of the other therapies
because of it. Don seems to think the Speech Therapy is not
doing him much good, but Dr. Angeloni said to continue anyway.
He then illustrated something remarkable about Don's left field
cut. He held up his hands on either side of his face. "Now,
can you see my right hand?" He asked.
"No," Don said, as expected for someone with a left field cut.
"Now," the doctor said, "look up toward the ceiling. Now, can
you see it?"
"Yes," said Don, rather astonished. So was I. Angeloni
explained that in addition to the right and left bifurcation
of the visual field, each side was further divided into three
"quardrants": an upper quadrant, a middle quadrant, and a
lower quadrant. What Don did when he looked up was bring Dr.
Angeloni's hands into view of his lower left quadrant. Presto!
Instant vision.
"Is this something that I have recovered since the stroke?" Don
asked.
"Yes," said Angeloni. My heart leaped.
"Does that mean the other two quadrants will also recover?" Don
asked, cutting right to the heart of the matter.
"It is rare," Angeloni said, "but it does happen. The fact that
the lower quadrant has recovered is a much more hopeful sign than
if it had not. If it had not, I would say there was very little
hope for recovering the left field. But it has, so there is some
hope. Some hope. But, it is rare."
Don nodded, and they went on to discuss other topics, included
whether the Dilantin Don is taking
would affect the QEEG readings, and the importance of a second
angiogram. Don explained
that the attempt to rule out micro-vascular disorder was holding
up the test.
"Yes, that would counter-indicate an angiogram," Angeloni said.
"Right now, the most important thing to prevent is another stroke."
"I agree," Don said, then added wryly, "The fear of another stroke
is always in the back of my head, so to speak."
The doctor smiled.
Don said, "I'm beginning to understand that there are some things
that I used to have that I just don't have any more. Some of
them, I just have to be patient and wait for them, as they come
back, as I recover and heal. But others, I just have to
recognize and acknowledge that they aren't coming back.
That the person I was, I will never be again."
"It's a kind of mourning, isn't it?" Dr. Angeloni said.
"Yes, exactly," Don said. "Part of my self has died.
Some of the selves I've constructed and felt so proud of,
some of those selves have died. And I haven't really mourned
them yet."
After the session, Don was very thoughtful. We sat in Marmalade's,
drinking tea and coffee and playing a variation on the Set game.
Then we walked along the bike bath between Ross Commons and
Kentfield Rehabilitation Hospital.
"You know," he said, "even though there are some things I
have to wait for, and some things that are gone for
good, there's one thing in my life that's exactly like I would
want it, and that's you. I am so glad to have you in my life."
"I'm lucky to have found you," I said. "I was afraid I would
never open my heart again. I was scared to. But not any more."
"I'm afraid of something," Don said. "What if you fell in
love with the wrong person, the person I was before the stroke?
I'm not that person anymore. What if you're in love with him
and not me?"
"I'll let you in on a little secret," I said, and
I stopped and turned to face him.
"I'm a promiscuous son-of-a-bitch, and I love them both."
Then I gave him a big kiss.
When we finally pulled apart - having
given at least one Monday morning jogger something to talk
about - he looked at me and said, "Well, I'm a
promiscuous son-of-a-bitch, and I plan to take full advantage
of it."
On the way back to Bolinas, Don came up with the idea of coming
down to meet me in Mountain View after his day at the office
on Friday, instead of me driving up to San Mateo to meet him and
Davis (and Jnani, I believe) on Saturday. I immediately agreed
that is was the more practical plan and marveled that I had not
thought of it myself. Of course, it means Don will have to
negotiate public transportation from DMK to Mountain View,
but he seemed pretty confident of being able to do so. It's been
my experience that Don is usually ready for more independence
than any of us caregivers are willing to give him. So I said
yes, then promised myself I would not worry myself to death between
now and then - a promise I'll find hard to keep.
We had lunch in Stinson Beach.
As if he had heard my interior monolog, Don managed to get
lost giving me directions to the Grill. He was very embarrassed
by it. It brought home again the message that some of the
competencies he had taken for granted now needed to be
monitored and double-checked. He finds these episodes
discouraging and upsetting. Over lunch he said:
"I think we fear death because it takes away our concept of
self - or selves. There were so many selves I was proud of:
my physical strength and stamina, my intellect. I'm just now
realizing that I have to mourn those selves. The self I was,
or the collection of selves I was, has died. We have to learn
to let go of our 'selves' so that when we actually do die, we
are ready. That way, death
is not so frightening because we have already
let go of what would otherwise be taken from us."
I recalled an earlier conversation we had had on this topic.
"Perhaps that's why heroes are admired. They get to choose
their death with all of their selves intact."
Don also talked about "pride," saying he felt perhaps the stroke
was teaching him not to be so proud of the selves he has
constructed. "Pride goeth before a fall," he quoted.
"Well, true enough," I said, "but this is not something you
deserved or earned. It just happened. There's no justice
in biology."
"I've always felt I had to earn my place in life,"
he said, "that I had to bring soemthing to the table in order
to be admitted or accepted."
I guess this is at least part of what is behind his drive to
get back to work, and to work for an organization that "gives
back" something to the community.
Back in Bolinas, Don spent a few minutes teaching me how to
detach and reattach the rear wheel on my bicycle (it had somehow
gotten loose during its stay in the garage). Then, with the
sun still well above the horizon, I headed back to Mountain View.
Although we'd had nearly a perfect weekend together, I decided I
wanted to end it a little earlier than I'm used to. "I want to
see my house in the daylight," I explained to Don. He was sorry
to see me go, but he said he understood.
I took Highway 1 on the way back. The lighting along the
coast was dramatic and inspiring. I took several shots. This is
the view I wish Brian and Kent could have seen.
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1. Lunch at Stinson Beach
2. The Coast above Stinson Beach
3. More Dramatic Lighting
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Tuesday, March 16
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Wednesday, March 17
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Thursday, March 18
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Friday, March 19
I woke early, eager and anxious at the same time. Would Don make
all the right bus and train connections? Would he end up in
San Jose instead of Mountain View? Would he disappear into the
fog of San Francisco, never to be seen again? At work, I bit
my fingernails while my coworker Brad tried to get me to relax.
Sure, Don's done all this before, but someone was with him.
Then I remembered my foolish panic when I left him at the Hyatt
on the Embarcadero. He found my car with perfect ease while I
was running around like a chicken with my head cut off. 'He'll
do fine, he'll do fine,' I told myself, the repetition underscoring
my lack of confidence. In truth, Don has always outperformed all
our expectations.
He's just send me e-mail from DMK, saying he's had a fabulous day
at the office. Very astute (and brave) of him to put in an
appearance without a "minder." That should increase DMK's confidence
in his continued recovery and usefulness to the company. He says
he's about to leave for the train depot (his mail is time-stamped
1:45 PM), that means he should be on the train around 3:00, and here
in Mountain View between 4:00 and 5:00.
Oh, boy! Christmas at last!
I waited for Don at the train station in the late afternoon.
Don was not on the 5:10 or the 5:16 trains, both of which were
running late. Disappointed and a little concerned, I went back to
the office. 'He'll get here when he gets here,' I said to myself.
Meanwhile, the sky put on a fantastic sunset, a light and magic show
just like I'd promised Don.
He finally called from a phone across the street from the station
around 7:00 PM. The trains had indeed been late due to a fatal
pedetrian-train accident further down the line. I went to pick
him up on the corner of Castro and Evelyn, then drove back to
the building where I work to park.
"So, this is Glyphic Central?" Don said, looking up
at the twelve-story building.
"Yup," I said, "World Headquarters."
We decided to go out to eat, and as we left the parking lot, I
pointed out the western sky, where a crescent moon, Venus, and
Jupiter were forming a jewel just visible through a gap in the
clouds. It was a beautiful trio,
something I had hoped we could see together.
Our dinner at Global Village was uneventful (though the food was
not up to their usual standards). As we got up to leave, Don
headed for the bathroom and I got up and waited for him at the
front door. Before leaving, he said,
"If I'm not back in two hours, send out a search party,"
but when he came back he actually did get
lost. He returned to our table and noticed I was gone, then
stood for a moment in the middle of the restaurant looking at
nearby tables and back toward the bathroom. He finally turned
and looked toward the front door, and I waved to him. It took
him a while to see me, but eventually he did and we left together.
It was a scene that would be repeated, in various ways, across
the weekend.
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Saturday, March 20
Don and I both woke about 8:00 AM, in time for his Dilantin,
then lazed about in bed a while. I took a picture of
him with his hands gripping the rails of my headboard.
"That looks familiar," I said.
"Yes," he said, "all the comforts of Kentfield."
"All you need is a couple of wrist restraints," I said.
"I think I'll pass," he said.
Since we were
fully awake, we decided to go to the Baylands FrontRunners
Saturday morning Fun Run. The Baylands is one of the largest
FrontRunners groups in the world, and this particular morning
we had well over 100 people show up for the "circle up." Don
and I did the three-mile walk around the Palo Alto golf course
and airport, a route that takes us through part of the Baylands
preserve. We saw several egrets and various kerlews (I think).
Afterwards, we went to the social hour of coffee and pasteries
held at Palo Alto Cafe (it's held at a different location each
week). While there, I introduced Don to Mike Cannon, who invited
us to his birthday party on Sunday night. I had heard about the
party earlier that week, and had said if Don felt up to it, we
would go, even though it meant getting back to Bolinas later than
usual. Don's reaction was favorable. I think he's anxious
about my social life and wants to make sure I don't pass up any
opportunities "just because" I'm with him. I don't think of it that
way. I think more in terms of integrating him into my social
life, not having to choose between it and him.
After coffee, we went to work. Part of my agreement with Glyphic
that allows me to be Don's chauffer on Sundays and Mondays is
that I shift my work week to Tuesday through Saturday. I
keep track of my hours to make sure I still put in eight hours
during the weekend, and the bulk of that time comes on Saturday.
This Saturday, I tracked down two persistent bugs in software I
was developing and did some system upgrading and maintenance.
I actually got more accomplished than I had expected.
I wasn't the only one working. Don used the time to solidify
his schedule, a task which is becoming increasing complex.
We left around 4:30 for San Mateo, where we met Davis and Jnani
for dinner and a concert. Davis had very thoughtfully invited
both of us to the concert and bought our tickets. It was the
concert that first got Don thinking about spending the night at
my house, and eventually led to his deciding to try getting
to Mountain View on his own. In that sense, it was a breakthrough
event, combining a number of goals: a social event, Don visiting
me instead of me visiting him (which helps him feel the
relationship is more balanced), and an extended experiment in
reading maps and timetables, planning and executing a journey
on his own.
The original plan had been for Don to stay in Sausalito with
Jnani. Davis was going to join them for dinner, then they
would all drive down
to San Mateo, where I would join them. Don's initiative
cut out the dinner with Davis and Jnani in Sausilito, so I came
up with a new plan for having dinner in San Mateo. I didn't want
to be accumed of "hoarding" Don. Using the Internet, I found a
Good Earth restaurant near the concert venue, and
Davis and I worked out the details of the rendezvous
by phone on Wednesday.
Just before Jnani and Davis came in, I said, "I bet Jnani sits
next to you and Davis sits next to me."
"I think there's something going on there," Don said.
"Between Jnani and Davis?" I asked. Don nodded.
Sure enough, they sat as I predicted, and sure enough, there
was an awful lot of eye contact and interest flowing across
the table between the two of them. I hadn't noticed this
before. Shows whose powers of observation are keener, doesn't it?
Jnani very kindly paid for our dinner and then we headed
over to San Mateo College for the KCSM benefit concert.
It was all jazz and all women. I was thrilled when I
heard Linda Tillery was singing in the second half. She had
done a concert with the Silicon Valley Gay Men's Chorus three years
ago. (It was that concert that started me thinking about switching
choruses, and eventually led to my joining Silicon Valley.)
Her energy and stage presence
are always engaging, and I looked forward to seeing her again.
Don had another moment of spatial confusion before the concert.
He had gone to the restroom, and when he returned to the lobby, it
was full of milling people. I was standing to his left in
the crowd, but he didn't look my way. He walked all the way
down to the other end of the lobby without seeing me or Davis
(Jnani was still in the women's room). I started after him.
When he got to the far end of the crowd and still hadn't found
him, I could see a look of panic cross his face. Fortunately,
he soon saw me heading for him.
Moments like that tear me in two. Should I help him immediately,
or should I give him the freedom to make the mistake, then
correct it himself? I so want to spare him any anxiety, but
I worry that intervening every time I think something is going
wrong will become meddlesome for him and tiresome for me. I
guess we'll have to talk about it some time and see what kind
of a policy we can come up with.
The concert was grand and all four of us had a good time.
We went our separate, coupled ways afterwards, and I made a
mental note to thank both Jnani and Davis for sponsoring
the first real date Don and I have had in an awfully long time.
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A Visit to Mountain View
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