Sunday, January 17
For the most part, this was a pleasant day, despite the
constant rain. After his early afternoon nap, I brought
Don a deck of cards and a set of color-coded
dominoes. He especially liked playing dominoes - partly because
he beat me every time, and partly
because it gave him something interesting and unregimented
to do. Don said he thought it was good therapy, especially
matching the colors with the patterns of dots on the tiles.
The game also requires him to plan ahead,
remember to draw a tile after each play, and scan the entire
playing area (look left!). I made a point of putting the draw
pile on his left, and tried to extend the playing area in that
direction every time I played a tile.
Later, Don had visits from Chris, and from Jessica and Kent, who
brought their dogs into the lobby where we were playing cards.
I was trying to teach Don gin rummy, but for the most part he
was just enjoying
being out of his room and having visitors. He seemed to like the
dogs a lot.
In the evening, Mary came for a visit. He told her how the commotion
in the next bed the other night really frightened him. "I thought
I was going to lose it," he said.
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Monday, January 18
I extended my usual weekend stay to today so I could get the
training I'll need to take care of Don when he's discharged to
home care. As Don and I were walking around the corridors as part
of his physical therapy, we passed by the office of his case
worker. "So is there a date set for my release?" Don asked her.
"February 4th," she told him. Her name is Debbie and she is very,
very pregnant. Don introduced me to her as his "significant
other," which made me grin like an idiot. For one, it was great to
hear him say it. It was how I saw my role, but I wasn't sure it
was how Don saw it. The site of his brain damage can affect sexual
behavior and memory. Would he still think of me the same way as
before? Were we really lovers before, or were we just dating? His
introduction cleared up these nagging doubts. Debbie was a
cheerful and friendly person, easy to talk to. I told her that I
had some questions I'd like to ask about Don's treatment and
medications, and about how to care for him when he gets home.
"What sort of questions?" she asked.
"Well, in particular, is there anything couples should do or not
do when one of them is recovering from a stroke?"
"I'll be talking to Dr. Remen this afternoon," she said. "Come see
me after that."
Don's legs started getting wobbly, so we headed back to his room.
But the mention of Dr. Remen put a chill in my heart. Could her
position be powerful enough that she cut me off even from Don's
case worker?
That afternoon, the doctor covering for Dr. Doherty (who was out
sick, as about half the staff was that week) came in to check on
Don. While he was there, I asked Don, "Is it okay with you if I
talk to the doctor about your diagnosis and treatment?"
"Sure," he said.
"Is that okay with you, Doctor?" I asked, partly to make sure he
had made note of Don's consent.
"I'm just covering for Dr. Doherty," he said. "You'll have to talk
to her."
The grip of a power of attorney on medical staff is stronger than
I had suspected. I already knew how Don's doctor would react to my
queries. Would it also keep me from discussing things with Don's
social worker?
Apparently so. In the afternoon, while Don was taking his nap, I
came across Debbie eating lunch at the nurse' station. "I'm
sorry," she said, "but I can't discuss Don's case with you."
I felt a sinking feeling.
"I know there is a specific block against talking to me in Don's
medical records," I said, "but can't you give me anything? Even
just hand me a pamphlet?"
"Let's go down to my office," she said. I helped her stand up (she
was that pregnant) and we walked to her office.
"I understand the need for medical privacy," I told her, "and I
don't want to do anything that would impede Don's recovery. But I
think there are questions I have to ask in order to act
responsibly once he's home."
"Why not ask Dr. Remen those questions?" she asked.
I looked aside and took a deep breath. "I would be embarrassed
asking her those questions, and I don't think Don would approve of
me discussing our sex life with her. Besides, Dr. Remen and I are
not on the best of terms," I said.
"Why is that?" she asked.
"I think she thinks I'm a danger to Don," I said. "I think she
believes Don would recover faster if he weren't gay."
"But he is gay," she said.
"Oh, yes," I said, "he is. But when I objected to the limitations
put on our visiting hours, she quoted the Bible to me. She often
can't be reached by phone, and she's stopped answering my e-mail."
Debbie looked dubious but concerned. "Well," she said, "there is a
pamphlet put out by the American Heart Association on how stroke
affects behavior. I could give you that."
"Would you, please?" I asked. "Anything at all would be a help at
this point."
"I'm afraid it's not a very good copy, but it's all I have."
I'm sure it wasn't really "all she had," but it was neutral enough
not to violate the interdiction against me. It was, however, very
poorly photocopied. Several of the pages had been misaligned so
only half the text was visible. Nevertheless, this was the first
piece of information that was specific about right-side injuries.
It mentioned the stroke survivor's tendency towards impulsiveness,
the inability to judge his own disability, and several other
specific behaviors I could see manifest in Don. In some ways, it
was disheartening, but in others, it was very encouraging. It was
the first time anyone had tried, even meagerly, to answer my
questions. Now I had something concrete to go on.
We finished our unofficial (and off-the-record) chat by
talking about the plans for Don's 47th birthday party. She said
she had scheduled room 211 on January 24 from 1:00 - 5:00 PM
for the event. The room is about as big
as Don's hospital room would be without the beds. It
will only hold about 20 people. She told us that it would
be unwise to have too many people in the room with Don at
once. It would be overwhelming. I told her I thought some
sort of rotation plan was being worked up so that there weren't
more than about ten people at once.
Before I left, I went back to Don's room.
I sang him "Leading Home," a song I made up
based on some of the feelings we had shared this weekend.
Parusha was visiting when I left.
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Don and I after Occupational Therapy
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Saturday, January 23
I arrived around noon. Don was sitting at the nurses' station.
He was upset. The night before, Dr. Doherty had had a serious
talk with him about his limitations. The most serious was his
"left field cut." Information from his left visual field is
not processed by the brain and therefore discarded. She told him
that unless he recovers the ability to process information
from his left visual field, it is unsafe for him to drive
a car. Accordingly, she has notified the Department of Motor
Vehicles to suspend his license until further notice.
This news upset him so much that he developed indigestion, and from
the indigestion, a headache. The headache frightened him, but
the nurse on duty allowed him to take some Tylenol, which seemed
to help. He was still suffering a mild headache when I arrived,
and took another Tylenol while we waited for the last therapy
session of the morning and lunch.
The therapy came first. He walked briskly to the gym, showing
a much more energetic and balanced gait than the "old man's
shuffle" of a week ago. I took a picture of him
in a yoga pose which he described as "The Tree."
"It has a longer name than that," he said, "but I don't
want to confuse you." I just missed a much better shot, in
which he held this pose while joining both hands above his head.
After therapy came lunch, and after lunch, a nap. "They get me
up too early here," he said. He complained again about the alarms
and noises at night.
After his nap, Don and I had a nice, long talk about forgiveness,
anger, and how to cope with toxic feelings. He told me about
how he felt about his ex, Waz. He learned to use the
anger, which would produce a kind of emotional churning that
led nowhere, as a signal to turn his attention to his breath.
This would calm him and keep him from
endlessly rehearsing the role of "drama queen." I told him about
my own difficult feelings of exclusion and mistrust. "I can be
a drama queen, too," I said. "Just ask Jnani." I said I hoped
I could follow his example.
Despite dealing with such painful issues,
the conversation was one of hope and reassurance.
Being able to share these things
had been the basis of our intimacy before the hemorrhage.
It was the thing I have missed the most ever since. I am
greatly relieved to see it still flourishes.
Saturday evening, Jnani and Maha came to visit.
While Jnani was giving Don a massage,
I read them an excerpt from the poem
"Thanks" by W. S. Merwin.
A little while later,
we were treated to a vivid demonstration of just how unrestful this
hospital can be. The fire alarms started going
off, accompanied by strobing flashes from warning
lights just outside each patient's room.
There was no real emergency. Apparently, the water vapor from
a respitory therapy machine triggered the smoke alarm. Nevertheless,
the staff had to do the complete drill as if there were a fire, so
they had to close all the doors, including the door to Don's
room. Well, The Contraption is right next to the entrance to the
room and prevents the door from closing, so two of the nurses had
to wrestle the thing diagonally until the door would clear. It
was still in that position when I left about an hour later.
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The Tree
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