Sunday, May 23
Don rises early to teach the yoga class, riding his bike out
to Commonweal and fitting nicely into
"everyone's comfort level." I have a very lazy morning, just
barely rousing myself in time for brunch with Don at the Coastal
Cafe in "downtown" Bolinas. We want to get there in time to
eat then head over to the Bakery to meet up with a group of
Different Spokes bikers who have organized a special ride to
Bolinas to visit Don.
An amusing thing happened as a result of one of Don's yoga
lessons. The workshop is to help doctors deal with death in
their practices, something cancer docs have to face frequently.
Don mentioned to the group that he understands how facing
the death of your patients on a regular basis can numb your
empathy. And he told of his own near brush with death from
his hemorrhage, and how important it is to keep the human
connection going. At the end of the yoga, which is the first
thing offered in the day's schedule, he usually tells his students to
preserve the silence on their walk back to the workshop, taking
time to notice their surroundings and the beauty of the scenery
around them.
At the end of this particular session, as he dismissed the
class, he said, "Enjoy your days."
"I meant each of them should enjoy his day,'
Don told me, "but because there were several people, I said 'days.'
One of the docs misunderstood me. He thought I meant, 'Enjoy
the rest of your days, because they may be few.' He said it
had a profound effect on him, coming from someone who had just
recently nearly died."
"You better be careful," I told him. "You're in danger of becoming
Saint Vivekan."
He laughed. "Not if they knew my private life!"
"But we need a patron saint of chaos."
"Be careful," he said, fluttering his hand as he sometimes does
in frustration, "I'll smite you with confusion and impulsiveness!"
We met up with the bikers at the Bakery, though they arrived a
bit later than we expected. I was actually beginning to worry.
Don's friends flake out on him so often, and it is so
disappointing to him. But my fears were unfounded. By the
time I had moved the car from the Cafe to the Bakery - taking
a quick trip down the road to see if I could see them coming -
they had already arrived. There was Rob, Dan, Doug, Jeff
(a handsome Canadian), and Bonnie. They made a colorful group
outside the Bakery.
Deciding the Bakery didn't offer enough substance for their
appetites, we returned to the Cafe, which was suddenly full
of people, despite the cool, overcast weather. They set us
up with a table outside, and I went back to the car to get
some blankets to keep the thinner members of the group from
shivering to pieces.
After lunch, the bikers went on their way, and Don and I returned
to Commonweal to pick up some left-over food, a common fringe
benefit of living so close to the compound. This was my first
view of the inside of one of Commonweal's retreat buildings, and
the views from some of the upstairs rooms is stunning. There
is one window well, fitted with a window seat and cushions, that
I just fell in love with.
"I could spend a whole day in this window seat," I said.
A woman who was working there replied, "I could live
there." The cook straightening up the kitchen doenstairs
wondered if we liked sweets. "Oh, boy, do we!" I said. She
gave us several pecan squares and some leftover pie.
Don was hoping Rachel would still be there, but I thought I
saw her leaving as we arrived. He asked around, and someone
said she thought she might still be at the administration building.
As we left, Don said, "We can meet Rachel at the main building
if you'd like. She really admires you."
Was this an overture? From whom? Does the message of Rachel's
admiration come from Rachel or from Don - or from Don's
wishing it were coming from Rachel?
If Dr. Remen wants to contact me, she knows how.
I think Don is trying to create a friendship
where there is no natural basis for one. I cannot be friends
with someone I do no trust, nor can I be friends with someone
who assumes she is my moral superior. Both of these would be
barriers in Rachel's case. There was too much deception over
Don's medical power of attorney for me ever to trust either
Rachel or Jnani. I'm grateful for the work they did on his
behalf, but none of that work required or excuses how they
treated me.
"Some other time," I said. "We have a lot of work to do today."
We spent the rest of the afternoon packing my Caravan for
tomorrow's trip to Oakland. We got Don's computer, clothes,
desk, and entertainment center packed securely into the Beast.
Then we watched a three-hour Joseph Campbell tape. Because
the "entertainment center" was packed away, we watched on
the VCR in the livingroom. It was, indeed, a "big
empty house" and cold, too. I could see my breath.
Don is much better at building a fire in the stove than I
am, but they have run out of firewood. Spring isn't supposed
to be this cold.
During the videotape, we discuss my work situation. I mention that
I feel I have gotten out of touch at work. I'd like to get back
to normal hours and a regular work week.
Don agrees to ask his doctors and therapists
if they can somehow accomodate the shift. He is wonderful about
it, not taking it as an abandoment, but as a problem to solve
and a way to make my life easier.
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1. Bikers at Bolinas Bakery
2. Rob Tries Out My Camera
3. Bikers after Lunch
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Monday, May 24
Shifting back to a normal work week proves much easier than I
had imagined. Dr. Angelone says our timing couldn't be better,
as he has just opened up an 11:00 slot on Monday mornings. He
was going to give another patient the opportunity to switch, but
since Don asked first, he gave it to him. Don should easily be
able to get from Oakland to Ross by 11:00 AM, so that part of
his schedule is covered.
But will Kentfield be able to adjust as well? The problem turns
out to be moot, as both the speech therapist and the physical
therapist announce that today is Don's last session with them.
They can do no more for him than he can do for himself. The speech
therapist pronounces him "accurate, but slow" in the logic
puzzles, and Matt, Don's favorite physical therapist, advises
him to "join a gym." I decide to call this Graduation Day,
and take a picture of Don in a sweaty T-shirt with Matt.
It's a good thing the outpatient therapy is over, as Don's
switch from an HMO to a PPO is once again proving to be more
trouble than it's worth. All of Kentfield's billings to Don's
HMO have bounced back with a note saying Don's insurance was
"cancelled at the insured's request" at the end of April.
Don cannot understand this, especially since Blue Cross's
initial message to him about the switch was that his transfer
from California Care to Prudent Buyer was denied. It wasn't
until later that they sent him PPO cards and said the change
had gone through. Besides, both California Care and Prudent
Buyer are Blue Cross policies. Surely, he thinks, Blue Cross
knows when a client moves from one Blue Cross plan to another
and can route the bill appropriately.
The answer, apparently, is no, they can't. Either Don or
Kentfield has to submit the bills again. In the meantime,
Don will get all the bills for a month's worth of
Outpatient Center appointments, since,
as far as they can tell, he wasn't covered by insurance
during the entire month of May.
"I thought they only booked therapy appointments when they
had clearance from the insurance," he complains to me. That
is, in fact, what they have been telling us all along. It
is the reason they have changed his appointment schedule every
three weeks, a procedure I found particularly annoying.
How can a brain-injured person keep from getting confused
when his appointment days and times keep changing?
Now they say they didn't know he wasn't insured for nearly
a month. So, whom did they clear May's appointments with?
Shouldn't the problem have shown up at once? It doesn't make sense.
But then, the whole justification for switching the insurance
plan in the middle of his treatment didn't make sense
to me in the first place. I grumble something to that effect
to Don, and wonder to myself how permanently disabled people
ever manage to survive in this country.
We go to lunch at the Half Day Cafe. Don automatically follows
the hostess into the restaurant, even though she tells us to
wait at the cash register. It seems to be another example of
his running on automatic, reacting to what he expects to happen
instead of responding to what the environment is really telling
him. He ends up sitting down at a table that is still cluttered
with dirty dishes because the hostess was delivering a bill to
the next table. I go and join him, reminding him that he has
to wait until he's told to take a seat. He smiles and shrugs
it off.
I'm reminded that earlier that morning at Angelone's,
the doctor asked me, "How's he doing?"
"Fine," I say, "though there's an increase in dopiness since
the Dilantin dosage went up."
I don't mention the sink incident. I still don't know if that
was an isolated incident, a habit, or a symptom.
And I am still inhibited
about embarrassing Don in front of Angelone. I guess I don't
make the best objective reporter.
Over lunch, I ask Don if he could make another payment on his
loan. He says he'll be glad to, if I'll just tell him how
much.
"I'll send you a monthly statement," I say.
"That would be lovely," he says, but his voice and eyes are
deadly serious. I'm a little taken aback by it.
We drop Don's stuff off at his apartment in Oakland. We seem to
fill the place with boxes, most of them full of clothes I would
have thrown out rather than move. I mention that I think a lot
of this stuff could go to the Free Box in Bolinas. "Where do
you think it came from in the first place?" Don asks.
"Oh, I see," I say. "They aren't just clothes. They're treasures."
"They're stuff," he says, giving it a kind of hillbilly
accent.
We drive on to Palo Alto, where we go shopping for supper at "Whole
Paycheck." We split up once we're inside the store. I always
pause before doing this and take a moment to think: Can he get
lost? Where will we meet? Is there anything here that might
be a danger to him? But Whole Foods is a yuppie establishment,
and I figure he'll be safe enough.
I finish shopping before him and catch up with him in the bakery,
where he's buying a Chai tea. He heads for the checkout line, and
while I'm waiting for him, one of the bakery clerks comes up to me.
"Is your friend's name Don Flint?" he asks.
"Yes," I say, bracing myself.
"He left these on the counter," he says and hands me a short
stack of cards.
"Oh, thank you. I'm sorry. He has...," I fumble for a phrase,
"...cognitive problems."
"That's OK," he says and withdraws.
The cards are insurance cards and an old AAA card. I give them
to Don as we leave the store.
"Oh, yeah," he says. "I meant to throw them away. They've all
expired."
Back at my house, Don does most of the preparations for dinner,
chopping and dicing vegetables for a veggie scramble. We laugh
about how alarmed Bo was when he saw Don slicing ginger root
his first day home. That seems a long time ago, but today, Don's
behavior seems reminiscent of that earlier stage of his
recovery. Steve joins
us for supper and we have a pleasant, social meal, but Don tires
towards the end of it and becomes withdrawn. He has gotten up
early the past three days in a row, and teaching the course has
required a degree of physical and mental focus he has not used
for several months. We go to bed and he is asleep almost
at once.
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Graduation Day!
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Tuesday, May 25
This is the day of Don's much-anticipated appointment with
Dan Lowenstein, the expert neurologist and specialist at UCSF
that Don went through so much trouble (and delay) to get
access to. I drive him to the train depot, stopping by the
coffee shop on the way there. Before he leaves, he gives
me a check for his loan payment. I apologize for not having
printed out a monthly statement yet, then he's on the train
and gone.
Later, when I go to deposit the check, I see he hasn't signed it.
Oh, well.
I think about him all day, wondering how the meeting with Lowenstein
went. When I get home, there are three messages from him on my
answering machine. It's a Tuesday night, and it's late because
I've been to chorus rehearsal. The messages are a little garbled,
but from what I can make out, it's too late at night for me to call
him back at Carol's where he's spending the night. In one of the
messages, he gives me her phone number, but it's garbled as well,
missing a digit. But the most significant information is in the
third message, where he summarizes what Lowenstein told him.
Lowenstein had not examined the angiogram, nor had he
read the radiologist's report. In fact, he asked Don if he
had even had the angiogram yet.
"Yes," Don told him. "Isn't it there in my file?"
So, there and then Lowenstein reads the report. He scarcely looks
at the angiogram. I can tell from the way Don reports it that he
is very disappointed in this. This is the "expert advice" he's
gone to so much trouble to get? This is the "special treatment"
he can expect to get because he and Dan are friends? I shake
my head as I listen to the message. "Typical," I say aloud.
Don's message continued, "He had me do the clock - again - and
the finger wiggle test, and then he asked me to put an X in
the middle of a line. I was in top form." Don and I have
both been amused by the crudeness and ad-hoc nature of these
tests, which are by now old hat tous both. "He said I was
recovering my lower and middle fields, but still have an upper
cut."
'How much recovery?' I thought. 'Isn't there
a more precise and objective device for measuring feild cuts?
This man has the whole panoply of an epilepsy clinic at his
disposal. Can't he do better than wiggling his fingers?'
I remember the incident in the bookstore. Judging from that,
I wouldn't say his middle feild was recovering at all.
Don continued, "He wasn't enthusiastic, but didn't say no."
"What?" I said aloud. "Didn't say 'no' to what?"
"He said, 'I wouldn't say you're delicate, but still
recovering. And he didn't say anything about getting off
Dilantin."
"Damn!" I muttered.
"I'm supposed to have another meeting with him on
July 1st, and he may take me off it then. But he wants to give
it a full six months." And then he said he loved me, and
he hoped I had a good day, and then he said good-bye.
I can't help but be disappointed. Six months is the
standard minimun protocol for Dilantin in all the literature
I've read. But still, the degradation of his
acuity is so apparent to me, and its coincidence with the
increased dosage is so close. I am, perhaps, pinning too
much hope for Don's complete recovery on the withdrawl
of the drug, but it seems to me an essential first step.
He can't rewire his brain if he's taking a drug that keeps
his neurons from talking to each other.
Now it looks like I'm going to have wait another
month and a half to find out. So is Don. Damn.
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Wednesday, May 26
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Thursday, May 27
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Friday, May 28
Don must follow a complicated route to get to me this evening.
He must get from Bolinas, to Oakland, to Sanfrancisco, and then
to Mountain View. He said he would call me before getting on
the train. There is no call by 7:30 PM, so Steve and I go out
to dinner near the train station. I use Steve's cell phone to
check again at 8:15, and there is still no word. We get home
around 8:40, and Don has left a message on my machine. He's
at the Embarcadero station, about to take the next N Judah out
to the train station. I know the next train is at 10:00 PM
and worry that he will be waiting at a rather depressing location
in a not-too-friendly neighborhood.
Don next calls me at 10:30. He has missed the 10 o'clock train
and must now wait for the 11:59 - one minute before midnight.
"I can drive up and get you and we can be back in Mountain View
before midnight," I tell him. He hesitates to put me out of my
way, but I point out that I can be there by 11:30, half an hour
before he could even get on the train, and then we could spend
the ride to Mountain View together. That sells him on the idea.
When I get to the depot, I notice he's talking to someone. It
turns out to be Jim. I'm glad Don didn't have to wait alone.
Don climbs into the car as Jim heads off for the N Judah, which
is waiting to head back towards the Embarcadero. "Jim was just
walking down Townsend," Don said. "He was looking for a place
to eat, but I didn't want to do a sit-down supper. I was afraid
I might miss you."
Something about this story doesn't sit well to me. How could it
take an hour and twenty minutes to get to 4th and King on MUNI?
I know they're slow, but can they really be that slow? And the
coincidence of Jim being in the neighborhood seems to strain my
credulity. I begin to think that Jim and Don went to Eros
together - Jim lives nearby - and for some reason, Don doesn't
want to tell me. I am surprised by my jealosy and how willing
I am to believe this explanation rather than the one Don offered.
But I have been burned before by being too willing to accept the
innocent explanation and ignore the deception that's staring me
in the face. If my guess is right, my greatest concern is that
Don felt the need to conceal something from me. I very much hope
that isn't the case.
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Saturday, May 29
Don and I have a delightful morning in bed, then rise to fix
breakfast. Steve's friend Bernard has come down from The City
since the two of them are planning on taking a mini-vacation
on a dude ranch south of King City. Between Steve and Don,
they whip up a fabulous breakfast for the four of us.
We spend the rest of the morning running errands. We fail to
catch up with the FrontRunners at coffee, so we head out to
Whole Paycheck to buy stuff for tonight's dinner and tomorrow's
BBQ. On the way bakc home, we stop at Orchard Supply to get
Don a padlock for his bicycle chain and trellises for my
tomatoes. While in the garden section, I notice that they
have peppers and eggplant ready to plant. Perhaps I can get
a ratatoile garden started this summer after all.
We stop and do a little banking - Don depositing his SDI check
(I always encourage him to deposit it as soon as he gets it),
and I depositing Don's loan payment check, which he has now
signed.
Back home, Don makes a delicious scramble of the ingredients
we bought, and I leve Curtis a message inviting him to join
our BBQ tomorrow. Then we sit down to watch Roshanon on
Channel 9. The subtitles prove too much for Don. When
Woman in the Dunes follows, he gives up and goes to
bed. I stay up and finish the movie, then get sucked into
2001: A Space Odessy. I keep telling myself, 'I'll
just watch until the ape scene,' then 'just until the PanAm
flight docks,' then 'just until Hal looses it,' and of course
I end up watching the whole thing. Entrapment and illusion
seem to be the themes of the evening.
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