Sunday, May 2
Today was the celebration of Bo's birthday, so the house was
full of music, drumming, and good looking young men. I spent
most of the afternoon upstairs in Don's room, doing my "homework"
for Glyphic.
Don talked to his landlords about moving out. It appears that
he is aiming for moving at the end of May. I couldn't tell from
what he said if he has formally given notice or if he has just
talked to them about the possibility. Either way, they are
unwilling to sublet his room, but are willing to limit the next
tenant there to a 6-month lease, which would give Don the
opportunity to move back in half a year. Half a year can be
quite a while with this kind of injury. Barring a second
stroke (always the nightmare lurking in broad daylight), he could
have recovered enough in six months to be driving a car. If that's
the case, he could very well move back to Bolinas and still
keep his job the The City. He really loves west Marin. It is
difficult for me to imagine him enjoying a more urban lifestyle,
convenient though it would be for me.
David came by in the evening. He remarked how much improved
Don is in just the past two or three weeks. "You're handling
stuff now that used to overwhelm you," he told Don. I was
glad Don could hear it from someone besides me. I might be
a biased source, after all. They made plans to have David help
him move at the end of the month. They need to squeeze it in
around David's planned trip to India.
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Monday, May 3
A busy but productive day. I dropped Don off at Angelone's,
then I went back to San Anselmo to deliver the tire chains to
the man who bought Don's Explorer,
then on to Office Depot, Staples, and CompUSA to find
computer and office supplies. I rendezvoused with Don back
at Kentfield Outpaitent Services at 10:30. Wonder of wonders,
he had actually run into Dr. Dogherty in the hospital, and the
two of them had a wonderful reunion. He seems to have
separated out the resentment he felt for
the control she has exercised over his life, and was very
pleased that she sent him such a warm and personal note in
response to his poetry. ("Not, 'This is from before,' like
Angelone," Don had said.) He's glad to have "made friends"
with her and with Dr. Forrester.
While he was in physical therapy and speech therapy, I continued
working on my assignment from Glyphic, charting out a narrative
of how a plug-in talks to CodeWarrior. When Don finished his
therapy sessions, we went for lunch at the Half Day Cafe.
I have rarely seen Don in such high spirits.
"I feel like I've made two new friends," he said, meaning Dogherty
and Forrester. "I'm glad I'm over my... my..."
"Matriphobia?" I suggested. He laughed. Remembering how down
he was last Monday, I was perhaps a bit guarded in my empathy.
Frankly, his euphoria seemed out of proportion
and a bit unpromted, as if it
sprang from an inner mania rather than a connection
to the real world. But perhaps I was just in a dour mood, brought on
by the unseasonable cold weather and rain.
From lunch, we went to Marin General Hospital, where Don finally
scheduled his follow-up angiogram.
It will be a week from Thursday, on
May 13. That makes it a little more than two months after the
Jnani cancelled last appointment - which was the second time
the follow-up had been scheduled. Jnani cancelled it so that
specialists in Cincinnatti would have time to
examine Don's medical files for evidence of vasculosis,
a condition that would make an angiogram dangerous
(though there was no evidence of it on his first
angiogram). Jnani was supposed to gather
the necessary medical files together and send them to
Cincinnatti. As far as I can tell, that was never done.
Don has had to do all the paperwork himself, and has only
recently begun work on it. He got the form to release his records
from Santa Rosa just this weekend, which means it will be
at least another week before the material is sent to
Cincinnatti. He'll have taken the second angiogram before
the material even arrives there.
That we have wasted two months of Don's recovery
without a clear picture of what's going on inside his skull
makes my blood boil. But enough of that.
The woman helping us fill out the appointment schedule
was very helpful, cheerful, and efficient. Though Don wanted the
test sooner, she confirmed that there was no earlier time slot.
I once again reassured Don that I would be there with him. In fact,
I told him I would drive up on Wednesday night to spend the night
with him. I plan to take Friday off as well, just in case he needs
additional support.
It's funny, but the test comes right before the weekend I'd planned
to take off. I'm still planning on taking it off, but since I'll
be spending two days with Don just before I do, it probably won't
feel much like break. Oh, well.
We did other chores and errands, getting a blood test to check
Don's Dilantin levels, returning a video, some shopping and a
stop at the Post Office in Mill Valley to send out some weighed
mail. On the way back to his house, Don asked me to stop by the
Bolinas Post Office, too. When I said "Sure," he started unbuckling
his seat belt, even though we hadn't even gotten to Stinson Beach.
"Where do you think you're going?" I chided him.
"Ooops," he said. "I guess it isn't just around the corner."
We talked about how it will soon be June, which could mean it
won't be long before he is taken off Dilantin. It will be a major
milestone when he is. "I want to know if this mental fuzziness
is from the medication, or if it's something I have to live with."
He has found out from several sources that Dilantin can cause
confusion, disorientation, and an inability to concentrate. He
repeats these findings even though he has told them to me several
times (indeed, I was one of the people who told him about this
particular side-effect).
His mind now is like a hand without fingers: the
gross movements and general direction are there, but the fine
movements are lost, unarticulated. "It's like trying to pick
up a handful of dimes with mittens," I told him once.
Back at his house, I plugged the cables I had bought together
with the "hub" we'd gotten two weeks ago. We'd bought the hub
so Don could connect his two computers to his one printer,
saving him the awkwardness of unplugging and replugging
the printer cable each time he switched computers.
However, when we opened the package with the hardware hub in it,
Don saw that it came with a floppy disk,
and he gave up on the project - a good example of his being
overwhelmed by details or unexpected complications.
But last night, as I was reading the instructions that came with
the hardware, I
discovered the software didn't need to be installed for
the configuration we desired. We just needed different cables.
Using the ones I bought this morning,
I connected the two computers and the printer to the hub and
Don ran a test page from each computer. It worked fine.
Don can now print from both computers without having to unplug
and replug the cable each time he switches machines.
I feel like a hardware god.
Don's also beginning to see the wisdom of getting the second
phone line installed into his room. He says he's been on-line
a number of times when he has reached down to make a phone call
and heard only the hiss of the computers talking to each other.
Who knows? He may actually get it done just before he moves
out.
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Tuesday, May 4
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Wednesday, May 5
Cinqo de Mayo
Don called this evening and we chatted about his sesson with
Angelone and the results of his blood tests.
"Angelone really likes you," Don said. I felt a little
embarrassed by this, kind of like I'd been introduced to
his parents and passed the inspection.
He said that the results of the blood test showed his
Dilantin level was "low," though he didn't quantify what
that meant. He said Forrester was surprised that he was
taking only 200 mg a day. She thought his perscription was
for 300 mg a day. "Should I take a third one during the day?"
he asked her. No, she recommended he take two just before
going to bed.
This did not strike me as right. I went back to my notes from
the meeting with Dogherty on February 4. Sure enough, when
Don and I met with her, one of the questions I asked was,
"What is the dossage of his medication, and how long will he
have to take it?"
According to my notes, she said, "He'll be re-evaluated after
six months to a year." She said she wouldn't take him off
it without the advice of Dr. Lowenstein, and she said his
dossage was "200 mg a day, 1 100 mg pill every 12 hours."
It's disturbing to me that there should be some confusion
between what Forrester thinks is Doherty's perscription and
what's actually written on his perscription bottle. It's
also disturbing that she would suggest he just "take two
before bedtime." Dilantin levels are very tricky, from what
I've read about them, and shouldn't be changed without
monitoring.
I read my notes to Don and expressed my concern. I will
have to leave it in his hands, though. If I really want him
to be independent, I have to suffer the consequences. (That
sounds so parental!)
I then brought up the issue of whether or not he thought
Marin General would want him to stay overnight after the
angiogram. He said he didn't think they would. I only
brought it up because the doctor I had seen that morning
suggested they might. Don said he would look into it.
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Thursday, May 6
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Friday, May 7
We had a very frightening experience today, which I attribute to
Don's increased Dilantin dosage.
Don was due to arrive by train, as he had on several Fridays before.
He called me around 6:30 to say he would be taking the 7:00 PM
train, which was scheduled get him into Mountain View around 8:09 PM.
We were all working late at the office, so I didn't mind putting
in a ten-hour day. I left for the station around 8:00 and got there
before the train did.
But when it arrived, Don did not get off. I spoke to a conductor
just as the doors were closing. "When did this train leave San
Francisco?" I asked.
She looked at me in a kind of harried way and said, "Here," and
handed me a train schedule. The doors closed and the train pulled
away before I could say anything more.
A schedule, of course, was not the answer to my question. I wanted
to know if this was the 6:25 train arriving late - in which case
I had no cause for worry - or the 7:00 train arriving on time,
in which case I did.
I returned home and explained my dilemma to Steve, who suggested
I call CalTrains and find out if any trains were delayed. This
was a very practicaly suggestion and I wondered why I hadn't thought
of it. Though I doubted anyone would be at the CalTrains office
to answer my question at 8:30 PM, I called. Someone did answer,
and told me all trains were on time.
I grew worried. I started imagining scanrios. Some had
perfectly benign explanations for Don's absence; most were full
of human predators and dire outcomes.
I looked at the train schedule to try to quell my
growing sense of panic and plan some reasonable alternatives. If
Don had gotten on the wrong train - the eight o'clock instead of
the seven o'clock - he wouldn't arrive in Mountain View until
9:09. If he really was on the seven o'clock and missed the stop,
the first returning train he could catch wouldn't get him to
Mountain View until 9:18. He couldn't have gotten confused and
gotten off at the Castro Station stop because the seven o'clock
doesn't stop there.
Should I call the police? Where - San Francisco or San Jose?
Should I call hospitals? Which ones?
He had my phone number, both my home phone number and the office
number. He'd called the office earlier to tell me he was going
to be on the seven o'clock train. I called the office. Brad and
Mark were still there, but Don hadn't called.
I sat tensely in the livingroom until 8:55, then drove to the
station. The 9:09 train came and went, and still no Don. I
paced up and down the platform, not believing that he wasn't
there. Then I got back in my car. It was time to call the
police. I headed back to my house, but was halfway there when
I realized it would be 9:18 by the time I got home, just as the
next northbound train would be arriving at the station. I
turned around and headed back to the station. As I arrived,
I could see the northbound pulling away.
I also saw Don standing on the platform. I called out to him.
Even from a distance, I could see he was distressed. Worse,
I didn't see his backpack anywhere. Some the my worst scenarios
began playing back through my head.
"This has been awful," he said as I got out of the car.
"But you're here and you're safe," I said. We embraced and just
stood there a while, hugging.
"Where is your backpack?" I asked, fearing the worst.
"It's over there," Don said, pointing to a bench under the
streetlight. We walked over and retrieved it.
"I was so worried you'd be worried," he said. "I called and called,
but there was no answer, so I figured you were still waiting for
me at the station. It was awful thinking of you waiting and
waiting."
"I met the first train, but when you weren't on it, I went home.
The phone never rang." I was baffled.
Both exhausted by worry, embarrassment, and relief, we got into
the car and drove home. Don explained:
"I tried to get off at Mountain View, but there were a lot of
people ahead of me, and the doors closed before I could get to
them."
I remembered with anger the impatient, harried conductor. What
were they in such a hurry for? The train was on time.
"I got off at Sunnyvale and tried to call you. I was so upset.
Finally, a cab driver asked me where I'd come from. I told him
San Francisco, but I missed my stop in Mountain View. He
offered to take me to Mountain View. I guess I looked pretty
pathetic. He asked me how much the fare was from San Francisco,
and I told him four dollars. When he dropped me off at the
station here, he gave me four dollars."
So he hadn't arrived on the northbound train at all, but by cab.
That he arrived when I arrived to meet the train had been a mere
coincidence, abetted by a cab driver whose altruism seemed to
mix compassion with a desire to keep the homeless off the streets
of Sunnyvale.
When we got to my house, the last mystery was solved. Don
recounted his story to Steve, and when he got to the part where
he was calling and calling, Steve asked, "What area code did
you dial?"
"What?" Don asked.
A light when on in my head. "Of course!" I said. "Sunnyvale
is 408, and I'm in 650! You weren't calling me, but some guy
in San Jose."
If only the person in the 408 area code had answered, or had an
answering machine, he might of figured it out. Or not. I certainly
didn't think of it, and I don't have Dilantin to blame.
Don had had little to eat, so I fixed him some rice and a hard-boiled
egg.
There was much reassuring and cuddling in bed that night.
We both felt like we'd had a narrow escape, though in fact
it had mostly been from our own internal fears.
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Saturday, May 8
We started the morning with a rumpus in bed, then a drive to
Henry Coe State Park. I was hoping for a display of wild
flowers like there had been last spring, and the park did
not disappoint me. A couple of dirt bikers caught Don's
imagination, and after our hike he spoke to some of them
in the parking lot. He thinks Roger must know of this place
and whether there are any good "single tracks" here.
After a quick burrito in Morgan Hill, we headed to Monterey.
Don fell asleep on the way there. He seems to be much dopier
than he was just two weekends ago, when David remarked on how
much he had improved. Though the set-back is discouraging
in its immediate effects, it contains some hope. It signals
that Don's alertness two weeks ago was due to the lower level
of Dilantin in his blood, and his current foggyness - so like
the first month after his release from Kentfield - might be
due more to his drugs than to his deficits. That is what I hope.
We arrived in Monterey in time for the Members' Night dinner.
They were serving fish. "Well, of course," Don said. He
had the vegetable alternative: three large stuffed amnicotti.
Both dishes were quite good.
Afterwards, we toured the Mysteries of the Deep exhibit. I'm
very glad we saw it on a Members' Night. It was crowded enough
with kids banging away at the interactive exhibits and people
crowding around the special pressurized tanks. If this had been
a normal day, the crush and noise would have been unbearable,
even for though of us without brain injuries.
We drove home along Highway 1 to Santa Cruz, then over the hills
on Highway 17. On the way, we talked about trust and our feelings
for each other.
"I'm so lucky to have you in my life," he said.
"I'm glad I found someone I can open my heart to," I said. "I was
worried I never would."
"I know what you mean.
I always thought I'd find someone who was on a spiritual path,"
Don said, "someone at the ashram, or practicing yoga. But you
have a native kindness, a kindness others are striving to achieve.
What they're working for, you already have."
I think of some of my entries in this journal and doubt his
assessment of my "native kindness." But perhaps he sees something
I do not. Perhaps he sees the better me, the one I am becoming
by trusting my love for him.
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Henry Coe State Park
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