Sunday, May 9
I needed to put in several hours at work, but Don and Steve
and I decided to have some fun first, so we went to a matinee
of The Mummy. Don's a big Brendan Fraser fan, so he
was entertained. But he said as soon as he figured out it was
a Raiders of the Lost Ark kind of movie, he figured
Fraser wouldn't be taking his shirt off as much as he'd like.
Steve thought the movie was pretty stupid. I thought it
quite entertaining and don't see what all the critics were
griping about. It was certainly worth the price of a matinee,
which is what we paid to see it.
Don volunteered to finish my laundry while I was at work. We
agreed to meet at Printers' Ink at 6:00. Just before six, I
got wrapped up in what I was doing and didn't get to Printers'
Ink until 6:30. When I did, Don wasn't in the store. I told
myself not to panic, he'd walked to Printers' Ink before and
couldn't get lost, regardless of the Dilantin. Then I saw him
across the street, looking up the street in the direction I
would come from if I were walking from work. But I hadn't walked
from work, I had driven and arrived at Printers' Ink by the side
entrance, not the front.
I could see he was worried and I signalled to him from across
the street. He saw me and came over as soon as the light changed.
"It was my turn to worry about you," he said. I felt like a clod.
As we drove home, Don expressed some misgivings about the upcoming
move. "Am I going to be a guest or a tenant?" he wondered.
"I thought you were going to pay rent," I said.
"I offered to," he said, "but Jessica turned me down."
I could tell he would rather pay the expense of rent than be under
the uncertainty of "a guest," who might not get all the services
a tenant can expect and might be asked to leave without much
advance notice.
"Perhaps it's for their protection," I suggested. "That basement
room is probably not a legal rental unit, and if they collected
rent, they'd be breaking the law."
"It's just that I'm beginning to feel overwhelmed again," he
said. I wondered if it was the Dilantin talking again, or if he
cannot stand the uncertainty of the arrangement with Jessica and
Kent. Would an uninjured person be upset by the lack of a lease?
Perhaps. Would he describe it as "overwhelming"? Probably not.
When we arrived at my house, Don did something he has never done.
He got out of the car and walked over to the fence on the right
side of the garage. The entrance to my house is through the gate
in the fence on the left side of the garage. He stood there a
moment, looking baffled. He has never done that before.
"It's over here," I said, heading for the gate.
"Ooops," he said. "Trying to walk to Sunnyvale again."
I packed quickly for Bolinas and we were soon on our way. Back
at his house, in the loft that evening, we talked about love and
commitment.
"I think I'll always love you," I said. Knowing we had had many
conversations about impermanence and attachment, I added, "I
don't mean always always always-like-the-mountains always,
but always enough."
Don laughed. "Always enough is enough for me," he said.
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Monday, May 10
During the session with Dr. Angelone, Don raises the issue
of Dilantin's effect on his mental accuity. Dr. Angelone
told us about a patient he had seen some years ago. The
patient complained about confusion and lack of an ability
to concentrate. He had had a stroke seven years before.
To Dr. Angelone's surprise, he was still on the anti-seizure
medication. He recommended ending the medication, and when
the patient did, the symptoms disappeared.
We posted a rental notice about Don's room at Spirit Rock
Meditation Center after Don's appointment with Angelone.
Then we went to Kentfield, and between therapy appointments,
Don talked to the folks at ISHI. He was a bit upset with them.
Apparently, they were trying to get ahold of him in order to
set up a "pre-teach" before he teaches yoga at the next ISHI
conference. I could tell this was upsetting him, and since
we were between appointments, I suggested we go for a walk
along the bike path and talk about it.
"They said it was for 'the comfort level of all involved,'"
he said.
"How about your comfort level?" I asked. "Has anyone asked how
this makes you feel?"
"No," he said, "apparently 'everybody's comfort level' doesn't
include mine."
"How does it make you feel?"
"Like damaged goods."
We had reached the end of the path, where a large tree was
in full bloom in someone's front yard.
"Excuse me," Don called out to the gardeners. "What kind of
tree is that?"
"It's a horse chestnut," the gardener called back.
"Wow," Don said to me, "I thought they'd all been wiped out
by a fungus years ago."
On out way back to Kentfield for his speech therapy, we talked
about what to do about ISHI.
"It seems to me," I said, "that they have no idea what an
effort your schedule takes. You plan weeks in advance to have
rides lined up to take you where you need to go. It's not
their 'comfort level' snuck up on them. They should have
given you more advanced notice."
Don was silent.
"Do you think you will be able to do the pre-teach?" I asked.
"I don't see how. It took me days to set up the rides and
overnight stays to get me to work. I can't just jump in a
car and drive from San Francisco to Commonweal."
"So, what did you tell them?"
"I told them I didn't think I could do it, and that if it made
them feel more comfortable, they should get another teacher. It would
be all right with me."
"Is it all right with you?"
"I feel like another part of my life might be slipping away,"
he said. "One more evaluation leading to one more option
being closed off, one more thing I loved to do being taken
away."
I felt pretty angry that the people who say they care about him
were treating him with so little forethought. I tried to put
things in perspective.
"Well, your number one job is rehab. Your number two job is
getting back to work part-time at WebMD. ISHI and other things
that come along are just going to have to fit in on weekends
when your first and second priorities are taken care of."
"But I love teaching," Don said. "If someone else teaches the
class, I'll have burned my bridges."
"Don't think in catastrophes," I said. "There will be other
opportunities, ones that fit in with your schedule better."
We had reached Kentfield and he went in for his speech therapy.
He came out of it depressed. He said he thought the Dilantin
had made him perform poorly. I think he felt evaluated and
dismissed again.
I drove him home, and then drove myself back to Mountain View.
He called almost as soon as I got home.
"This is just a big empty house without you," he said.
"I know the feeling," I said.
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Tuesday, May 11
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Wednesday, May 12
Since Don's angiogram is tomorrow, we agreed that I would spend
tonight with him, just in case he was feeling stressed out about
it. Since he needs to be at Marin General at 9:30 AM tomorrow
morning, it was also better for me if I spent the night in Bolinas.
I'll also spend Thursday and Friday night with Don, but this
coming weekend is my weekend, and I'm going to spend it
at home!
We met at Mel's Diner on Lombard by agreement at 7:30 PM. I
was 10 minutes late, and Don said he was beginning to get
worried. I thought that was odd, since a 10 minute delay
from traffic is not uncommon at this hour. Perhaps he was
beginning to get worried about the test, or perhaps he was
just ribbing me.
He told me how he had waited four hours at at Golden Gate
Transit bus stop before a bus finally stopped and the driver
told him the stop was no longer active. He was angry at Golden
Gate for not taking down the sign.
He was livelier, perkier at dinner than I have seen him since
they upped his Dilantin dose. During dinner, he took two
pills, apparently preferring to "sleep through" the double
dosage, as Dr. Doherty suggested.
Since I don't like to drive over Mount Tam at night, we took
Sir Francis Drake all the way to Olema. We pass the turn-off
to Marin General at 9:25. "We'll be back here in 12 hours,"
I say cheerfully. Don is not enthused.
During the trip, I
talk to him about my friends Mike, an epileptic on Dilantin,
and Ken, who has recently had a cardio-angiogram.
Both times, my intent was to reassure him. Mike says that
Dilantin does, indeed, make him dopey. Ken talked about the
sensations of the dye coursing through his body, and the incision
in his femoral artery. I'm still not certain where they will
insert Don's catheter, but I guess the femor is the usual place.
Before we get home, Don asks me, "Have I taken my Dilantin?"
I remind him that he has. I'm a little surprised he could have
forgotten so soon. I wonder how often this has happened, and if
he has double-dosed himself before "just to be sure." Could the
dramatic decrease in mental acuity be due to that?
Once home, we comfort each other in bed. I think I need as much
reassurance as he does. It's the Hansel and Grettle feeling
again.
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Thursday, May 13
Don's Angiogram
We're up at 8:00 AM. I had breakfast immediately while Don,
reversing our usual pattern, stayed in bed until later. We
reversed our route of last night and arrived at Marin General
Hospital at 9:25 - exactly 12 hours later, as promised.
Marin General is pleasantly situated with lovely grounds
and gardens and a view of Mount Tamalpias from the surgery
waiting room. It's located on the site of a former resort
hotel. I remember being told that this would have been the
hospital Don would have been flown to if the locals hadn't
blocked the installation of a heliport. Too much noise in
their expensive suburban back yards. Wealth is a curse.
There were several glitches on the way to surgery. The first
was during Don's check-in downstairs. The receptionist
couldn't tell if his surgery was covered under California
Care or Prudent Buyer. Don doesn't understand why there is
any confusion. "They're both Blue Cross," he says. The
in-take receptionist decides to okay his admission since there
is a confirmation number from California Care, indicating the
procedure is approved, and since he does have a Prudent Buyer
insurance card, which the system seems to accept. (This will
come back to haunt us later, when Don gets presented with the
full $3,000 bill for the procedure.)
Up in Day Surgery, we get a rather confused and bumbling male
nurse trainee. It is his first day of duty. He makes several
amusing mistakes. He is unable to find a vein in Don's hand
suitable for the intravenous drip that they'll use to keep
him hydrated and to administer the anaesthetics. He has to
shave Don's crotch - both sides, so the surgeon will have a
choice about which femoral artery to use - and does a lousey
job of it and has to do it again.
He keeps having to return to the room to ask
"just one more question" that he's forgotten to fill out.
On one of these trips, he asks, "Do you have someone, an
agent, who takes charge?"
Don looks at him in confusion.
"Do you have someone to make decisions for you, in case,
you know..." He trails off. Don looks at me.
"Do you have a medical power of attorney in effect?" I translate.
Don turns to the nurse, "Yes," he says, "but I'm revoking it
and naming him," and he points to me.
At another point, the trainee says he's taking certain precautions
because of Don's diabetes. "What?" says Don. "He doesn't have
diabetes," I say. "But it's on his chart," the trainee says. He
goes out and confers (again) with the head duty nurse. They track
down the source of confusion. On the intake form, there's a box
that asks the patient to list medications he's taking. Don wrote
"dilantin" in his inimitable scrawl. Apparently, the in-take
receptionist misrerad this for "diabetes," and entered that in
his chart, even though there is a separate place for that on the
form and Don did not check it.
The intervention radiologist comes in to talk to us around 11:30.
We were supposed to go in to surgery at 11:00. He apologizes for
the delay, and says there will be a further delay "of about an
hour." Don has had nothing to eat since we ate at Mel's the
night before, and it's now getting on towards lunch. The "hour"
turns into two hours, and he isn't wheeled off to the surgery
preparation room until 1:30. It's off a basement corridor in
an older wing of the hospital. I walk alongside the gurney, holding
his hand. He is squeezing it tightly. When we get to the room,
I recoil. It's dark, cramped, and lit like a set from
The X-Files.
I have to leave him in this room.
"The procedure will take
about 45 minutes," the nurse tells me reassuringly as she gently
guides me out the door.
"I'll be all right," Don says to me, then turns his attention
to the prep nurse. He is surprisingly calm.
"I love you," I say, then I'm outside in the corridor, staring at
the metal door and the tiling on the wall outside.
I go to the cafeteria and eat a desultory lunch. I wander
back through the hospital corridors towards the Day Surgery
ward - or at least I think I do. I get lost and end up,
appropriately enough, in the psychiatric wing. Thoroughly
confused, I try to find my way back to Day Surgery. Along the
way, I find some empty cardboard boxes. Thinking of Don's
upcoming move (and wanting to get my mind off what must
be going on in that dark little room), I ask a passing custodian if
I can have them. He says yes, and I pick up the largest ones.
I give up trying to find Day Surgery and simply head for an
exit. Once I get the boxes in the car, it's easy to retrace
the steps we took this morning to get back to Don's room.
But, of course, there's nothing in Don's room. Don isn't there.
I pick up a book and a notepad and some Glyphic "homework" and
head for the surgery waiting room.
Although the procedure is supposed to take only 45 minutes, it's
3:30 before he's wheeled out. By this time, I've already called
the recovery ward twice to see if he's there yet. They call
for me as he's being taken from surgery to recovery. Don's
lying on the guerney, cheerful and chatty.
He's beaming as he turns to me. "The
doctor read the results right there. He said there was nothing
visible on the angiogram, and if he can't see it, then there
is nothing to worry about."
"That's wonderful," I say.
"Yeah. About December, he said, 'Forget about it!'"
We laugh.
"That's right," adds the anaesthesiologist. She is also
cheerful, and gives me a fast-paced summary of the results.
"There is no evidence of any additional malformations or
anuerisms, so the December incident remains a crypto-A-V
malformation."
"So, what does that mean?" Don asks.
"That means it was one-of-a-kind. You can get on with your
life. You can stop thinking of yourself as a walking time-bomb."
Don looks at her as if she's just given him the key to all
wisdom and understanding.
"Exactly!" he exclaims.
Then they wheel him off to recovery.
It's getting late in the afternoon, so I go up to the Day Surgery
ward and ask how late they will be open. "As long as it takes
for the last patient to be on his feet," the nurse tells me.
Back in the waiting room, I call the recovery ward to find out
how things are going. "Tell you what," the nurse there tells me
over the phone, "Why don't you come in and join him." Because
she doesn't want to "set a bad example," we have to arrange my
entrance into the ward clandestinely, so the other people in the
surgery waiting room won't notice.
Don is very glad I'm there with him, and I am, too. So, apparently,
is the nurse, who has me running little errands. Because they did
not arrange a vegetarian meal for Don, she "constructs" by sending
me to the cafeteria for yogurt, jello, and coffee. They give me the
turkey sandwich intended for Don.
I take Don's picture, saying it will be a nice "compliment" to
the one taken in Santa Rosa. "Yeah," he says, "but I'm smiling
in this one."
The staff decide that Don will check-out from the recovery room,
rather than being wheeled back to Day Surgery (he's the last
patient, and the folks up in Day Surgery want to go home). The
nurse who handles his check-out procedure turns out to be someone
Don knows from a workshop on the visual arts and healing. She
is rather clumsy removing his intravenous needle. He yelps
when she removes the needle and his hand starts to bleed. But
all the time they're discussing the program she was in, the
art thearapy project that she started but had to discontinue because
the corporation that bought the hospital wouldn't fund it.
I keep guiding them toward the door and then the car. They
keep chattering away the whole time, the nurse following us out
into the parking lot. It is past 8:00 PM, getting dark and windy,
with a chill in the air. I arrange pillows and recline the
seat in the caravan so Don can lie almost completely flat during
the hour-long trip back to Bolinas.
The preparatory literature and the instructions from the
nurse made it clear that Don was not to bend at the hip or
lift anything for 24 hours.
When I'm done with my preparations, they're still
talking. Don is in nothing more than his T-shirt and sweatpants.
'He shouldn't be out there in the wind,' I think. 'Why does he
always attract people who put their needs first?'
Finally, they say good-bye and Don climbs into the car. We
drive through the deepening night to Bolinas, where we both
crawl into his loft, exhausted.
It has been four months getting to this moment. I can't say the
wait was worth it, but the results certainly were.
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1. The View from the Waiting Room
2. Don in Recovery
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Friday, May 14
In the morning, we go to Bolinas for a bite to eat and some
coffee for Don, hot chocolate for me. We read the paper for
a while, then decide to go for a walk on the beach. We head
for the car, then Don says he wants to check the Free Box.
He heads back towards the People's Store while I go to the car
and wait for him.
I wait a long time. I begin to worry. Might something have gone
wrong, something having to do with the surgery? Did the wound
open? Has a clot formed?
I drive the car back to the lot between the Bakery, People's
Store, and the Free Box. I don't see Don. I get out of the
car and look in the Free Box shed. No Don. I go to the store
and check inside. Still no Don. Some old men sitting at the
tables in the lot are eyeing me. I go into the Bakery.
Don is there, reading the newspaper.
"What are you doing here?" I demand.
He looks up with a little smile. "Reading the newspaper."
"I've been waiting for you."
"Oh. Sorry." He puts down the paper, folds it, and joins me
at the door to the Bakery. As we leave, one of the old me
calls out, "You know, there's no parking here."
"Yes," I snap back at him, "I know."
We drive to the beach, me silently angry. Out on the
beach, the weather seems fit for rebuke. The wind is whipping
the sand into our hair, our teeth, up our noses. It is two days
after the latest storm, and the wind is still tossing. There
are very few surfers out, the wind ruining the breakers by
ripping the tops off the curls.
I wonder if I'm being unreasonably irritable. Why does it seem
to me that this time it is not the Dilantin?
We walk back past the Post Office and an antique store. There
is a lamp in the store similar to the one I want, but not quite
the same quality or period. Of course, the one I want costs
$500. I doubt I'll see that kind of money soon.
That evening, we watch two movies on videotape, Mulan and
Jacob's Ladder. I point out the computer animated sequences
in Mulan and explain to Don why they had to be rendered on a
computer. I also point out the song "Reflections," which has become
my favorite piece in our upcoming concert. Don is very interested
in my opinion of Jacob's Ladder. It is full of powerful
and disturbing images, and deals with the self's refusal to face
death. At one point, someone says to the central character, who
does not yet realize he is dead, "If you have let go of your life,
then the figures are angels, helping you to heaven. But if you
remain attached to the things of your life, they are demons, trying
to tear you apart." This theme has a lot of resonance for both
of us.
I have disturbing dreams all night, based in the imagery of that
movie. I should have taken one of my remaining sleeping pills.
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Saturday, May 15
Today begins my "free weekend" - the first weekend in four months
that I have all to myself. Knowing it is so relaxes me and helps
me ease into the day.
The morning begins with caresses. We both stay in bed quite late.
We don't head into the city until around noon. We stop first in
Bolinas to pick up the mail, get a maple walnut swirl at the
Bakery, and return last night's videos.
At the Presidio, Don drops off his heavy over-night bag. I am so
into day-dreaming my weekend that I don't even think about carrying
the bag for him. He isn't supposed to be carrying
anything that heavy for 48 hours after his surgery, which
doesn't come until three o'clock that afternoon. But I am so
busy day-dreaming about my weekend at home - being alone, working
in the garden - that I don't even notice. How thoughtless!
We drive on to Walgreen's to pick up Don's Dilantin prescription.
I don't notice Don going into the wrong store.
He tells me about it when he gets back.
He went into the photography store next door and didn't
realize he was in the wrong place until he asked, "Where's
your pharmacy?" and got funny looks from the clerk.
I didn't notice it at all: I was listening to Dan Savage
on "This American Life" talking
about the "dangerous looks" gay men give to straight men.
On our way back to the Presidio, I miss the turn and have
to go miles out of our way, circling almost the entire
camp before finding a place to let Don off. I follow Don's
directions to get us back to the vicinity of his office.
"Oh boy," he quotes Maha, "getting directions from Vivekan.
We must be really lost."
I leave him at Letterman Hospital. I'm going home, feeling
happy.
When I get home, there's a message on my answering machine from
my cousin Bernardine. My Godmother Catherine has died that morning.
I immediately call her back, then call my father, then call the
airlines to book a red-eye flight to Long Island that night.
This will not be my weekend at home after all.
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