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A matter of life
and death

A matter of life
and death


For months Paula Jacquard watched her friend Mark fight AIDS and cancer, proving once again that in queer culture the family you rely on is the one you make.

"Whenever 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 needed.

I hadn't 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 last time.

"What 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.

Mark's 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 in pain.

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.

I'm left 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 breath?

Advocate Channel - The Pride StoreOut / Advocate Magazine - Fellow Travelers & Jamie Lee Curtis

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Paula Jacquard