
There was a day in early December of 2007 when a doctor told me the time might come to make some tough choices. And he meant the single, toughest choice. And that time came. In the last several weeks of her life Rosina had at least eight or more tubes in her body – several in her chest, a catheter, one in her stomach, one in her side, stuff on her arms, her legs, her finger. She was getting dialysis for her kidneys, she was getting platelet exchanges, which also require a big machine, she was wired for all kinds of measurements, receiving all kinds of medication, fluids, morphine drip, and of course, she was hooked up to a ventilator. The “vent” was breathing for her. Without it she wasn’t quite strong enough to get all the oxygen she needed. There was a huge battery of equipment there. For those of us who had been through the whole progression, we were used to it, or numbed to it, but for someone who came to see her, came in fresh, it was shocking. She had problems with her lungs, her liver, her kidneys, she hadn’t been able to move or squeeze my hand for weeks. As her body was failing doctors chased symptoms and causes with tubes and chemicals, at this stage each small positive gain taking a toll somewhere else. (Ironically, a biopsy showed that the bone marrow transplant had gotten rid of her Leukemia). Doctors had told me that she probably couldn’t handle one more thing. On Friday, January 11, I was there with Lea and Lupe and she had a seizure. It was eerie. Moments earlier she seemed to be responding to the music we were playing, then, in response to a question, she began to shake her head no. She kept shaking her head and it was a minute before we realized that she was having a seizure. It lasted almost fifteen minutes. They wheeled her downstairs for a CT scan. She had some bleeding in her brain, an effect of an infection. That was the one more thing that she couldn’t take.

What is the purpose of all these measures, all the equipment and the drugs? To see you through. To build a bridge. To get you across the chasm, a chasm of things that will quickly take your life if untreated, to where you can walk on solid ground and heal. But the ground on the other side of the bridge had been crumbling for some time. We had reached a point where we were simply keeping her alive.
The preservation of life is deep in us and our culture. Real life sagas, and millions of stories, hinge on the simplicity of preserving someone’s life. And following that, the idea that you are a part of ending someone’s life is a heavy responsibility. I didn’t want to make that choice. But it had become quite clear that she was not going to recover. Did she really need an IV to regulate her blood pressure? To feed her? Dialysis for her kidneys? We began to peel away some of these treatments. We stopped her dialysis. The doctor told me that that alone could take her life in a short time. Days, although it could be weeks. It is difficult to say, but I have to admit that there were times, as I sat alone with her late at night, in the dark, with just the breathing sound of the ventilator, that I wished something would fail, that something would rise or drop too much and we would have to let her go, let her go by doing nothing, because I knew what was coming, the specific choice that I would have to make to stop it all. But she didn’t slip away like that.
The choice, of course, was taking her off the ventilator. This is the one that frankly makes you feel like you are killing someone. It's so
deliberate. But again, what is the natural course of events? What is “God’s” way? To let her go in peace as she would without all this intervention, or to keep her alive when she is by all accounts past healing? It was the latter that started feeling more deliberate. Then late one night two nurses were doing some maintenance on Rosina’s tracheotomy, the plastic apparatus in her throat that the ventilator tube was hooked up to. They didn’t have the replacement for one little plastic part, so one of them said, “Just take her off for a minute and I’ll clean that one.” So they removed the tube for about 45 seconds. She was breathing on her own. It was quiet, it was calm. It wasn’t desperate, it wasn’t gasping, it was in fact, quite peaceful. And suddenly the whole idea of letting her go that way wasn’t so horrific (except for the part about letting her go).
I was up very early on Wednesday the 16th. I’d been sleeping at the hospital and staying there full time for several days. I went out to the lobby, a comfortable place with huge floor to ceiling windows, as the sun was coming up on the San Gabriel mountains. The doctor was making his rounds and found me there. We discussed what had happened and how things were. I told him I thought it was time. I wanted to wait a couple of days, some people were arriving and Friday the 18th was Jake’s birthday, so we decided on Saturday the 19th.
You can’t imagine what it’s like to tell people "the plan". That there even is a plan. That it’s scheduled. I said it straight, I said it with sobs, I whispered it in some people’s ear. It is a haunting memory, saying “We’re letting her go tomorrow”. I remember so distinctly greeting my friend Andrea, hugging her as I had done many times, but this time whispering "We're letting her go tomorrow." Many things gain incalculable weight just by saying them out loud. Try "I love you". Sweet Rosina. I was not a witness, I was a participant, an instigator, a decider.
People gathered at the house on the 18th for Jake's birthday. An incredible solemn camaraderie among the food and drink and music we played. At one point Zelia sang "Circle Game" with Wesley on the piano. It was beautiful and perfect, and when she finished, there was a lasting silence in the room that was sorrowful, but absolutely amazing. An unannounced prayer. It was one of the few moments in my life where time stopped, and we were all aware of eternity.
It is a powerful, but a sad, sad, thought to think of us gathered around her that morning around 10:30, but I’m so glad we were. I held her head, my face close to hers. Jake on one side and Nina on the other, holding her hands. Others standing around the bed, laying their hands on her; my parents, Sonia, Bety, Zélia, Pearce, John, Mary. Others in the hall and the lobby. Mainly quiet. The only sound being her breath. All the equipment was shut off, just us listening to her breathing. It slowed, it slowed. It stopped at 10:53. I went out to the lobby to let Will know she was gone. He was eight.

I find that I don’t fear death now. I don’t think it’s terrifying. I don’t think it is mysterious. I think it is a release. But may we be here as long as possible to love, comfort, and care for those around us, and to make them stronger for when we might leave them behind.

Will in 2002, age 3
xo
ph
P.S. 2/12/09
The day that I spoke to Rosina's doctor about taking her off life support, he found me in the lobby and this is what I was listening to on my ipod, from "The Power of Myth":
Campbell: Eternity isn't some later time. Eternity isn't a long time. Eternity has nothing to do with time. Eternity is that dimension of here and now which thinking and time cuts out. This is it. And if you don't get it here, you won't get it anywhere. And the experience of eternity right here and now is the function of life.There's a wonderful formula that the Buddhists have for the Bodhisattva, the one whose being (sattva) is illumination (bodhi), who realizes his identity with eternity and at the same time his participation in time. And the attitude is not to withdraw from the world when you realize how horrible it is, but to realize that this horror is simply the foreground of a wonder and to come back and participate in it. "All life is sorrowful" is the first Buddhist saying, and it is. It wouldn't be life if there were not temporality involved which is sorrow. Loss, loss, loss.
Moyers: That's a pessimistic note.
Campbell: Well, you have to say yes to it, you have to say it's great this way. It's the way God intended it.