you're ready," said the doctor. I looked at
him dumbfounded. I knew Mark's respirator was
going to be disconnected and that his life was over. I
just didn't realize that his last moment would be
left up to me.
For the previous
nine months Mark had been fighting AIDS, carcinoid
tumors, and bone cancer. He'd been in the hospital
four times, the last two for chemotherapy, which he
was too weak to withstand but wanted anyway.
Mark had opted
against a "do not resuscitate" order. I
don't think they'd really explained it
to him clearly. As he told me, the young woman from
the hospital asked, "If something were to
happen--say, your heart were to
stop--would you want to be brought back?"
He'd answered, "Yes, I would."
So on this last
visit, when his heart stopped, doctors revived him. When
his breathing stopped, they put him on a respirator. Because
the morphine was slowing down his breathing too
severely, they took it away, along with his Valium.
When the intensive-care nurse would try to draw blood,
he'd wince. For him, the price of staying alive now
was to be voiceless, with a tube down his throat, and
in acute pain.
I had volunteered
to be Mark's home health care worker several months
before. We were friends, and he didn't want a
stranger. I was just supposed to help him with chores
and errands, but I ended up being his medical
advocate, his spokeswoman during hospital visits, and his
emissary with his family. That's what he really
met his family until he got sick in November 2005. His
mother came to see him in Los Angeles once for a few
days; his sisters came two or three times. It seemed
to me that they'd come from Pennsylvania to
shout at him all the things he had to do: Get chemotherapy,
clean up his act, move back east with them. They
wanted to control the situation. They were way out of
their comfort zone with Mark: I found myself saying
"gay" repeatedly in an effort to
desensitize them. Yet he always got better when they
were here. When they'd leave, he'd get worse.
It strikes me
that those of us whose biological families desert us for
whatever reason--who re-create families from a strange
hodgepodge of people we manage to pull
together--understand the price Mark paid to be
alive: being voiceless and in pain.
The doctors put
him on life support, hoping the extra help would cause
his body to rally as it had before. This time it
didn't work. Finally his doctor told me he was
going to call Mark's family and suggest that he be
given back his morphine and have his respirator
disconnected. For a moment I thought he was asking me
to tell them, which I wasn't going to do. That
morning I had put Mark's sister and mother on
speakerphone so he could hear them talk to him for the
should I say?" his mother asked several times.
"He's your son," I said. "Tell
him that you love him, and anything else you need to
say will come to you." I felt Mark needed to hear
that these people he now saw just once a year really
did care. By that time, however, I was all Mark saw.
No matter who was in the room or what was going on,
his eyes stayed glued to me. I was his constant, his
touchstone. I wonder what he was thinking.
Friends tell me
now that I went "above and beyond the call." I
disagree. I wasn't looking for praise or
acknowledgment; I was looking to help my
friend--who was kind and sensitive--feel whole
and loved and at peace. I don't know if I fell
short of that goal or not.
family gave the doctor permission to disconnect his life
support. The doctors would remove the IV tubes and
unplug the respirator--whenever I was ready.
Mark might live a few hours, or he might die immediately,
but the most important thing was that he would no longer be
I was ready.
They gave him
back his morphine and Valium, and I watched his whole face
and body relax. I knew peace just by being able to show up
for him. All the fractured parts of my soul coalesced
and I felt whole. What I wanted to give him, I had
found for myself.
now with memories and questions. How do you decide how far
you are willing to go for another human being? In our
culture of disconnected people--people with no
discernable anchors--who will show up for your last