Letting go

This morning when I picked up the phone, the NYU social worker said carefully, "he's really not doing well." "I'm glad you called," I said. "I couldn't reach anyone yesterday, but I wanted to talk about whether it's time to withdraw life support." I had been struggling with the idea all day yesterday, even discussed it with Rev Micah. "We have a meeting set up tomorrow to discus that with his mother, aunt and uncle from Connecticut and we're hoping you can join." I agree, though I am worried his family might not be ready to let go. They haven't been in the trenches with him, day in and day out, the way we have. They haven't heard him screaming in pain through the phone, or sobbing about how tired he is, or listened to the chaos when he tried to hang himself in the hospital. Cage, the volunteer who runs our HIV group, went to visit. He found him awake, they must have lowered the sedation, and said he seemed to recognize him. But when he asked him if he knew where he was or what was going on, he shook his head no. Cage kept it simple, telling him that he had an infection and was at NYU. He left him with a stuffed guinea pig from the gift shop. The image of this cuddly little stuffed animal amidst the brutal machinery and snaking tubes of the ICU hit me hard. Later, the social worker called back sounding stressed. He said that while his aunt seemed understanding, the uncle was demanding to see my proxy paperwork, angry that the client hadn't told him about it. I thought about the stories he had told me about this aunt and uncle. The most functional of his family, they own a house and a car, and he enjoyed visiting, especially for thanksgiving when they served his favorite duck. My vegetarian ears were cringing during those duck conversations, but he was happy in those memories. But I also remember he told me that after he was molested in the residential treatment center for boys, he was excited to see his aunt and uncle show up. In his child's mind, he was sure they would get him out of there, take him home. But they left without him. Years later, homeless and sick, he was disappointed again when they would not let him stay in one of their empty bedrooms. I remembered the hurt in his voice when he told me that they acted "funny" because he had AIDS, telling people not to use the bathroom after him. I've been his proxy for years, the paperwork is so old I had to get down on my knees to get to that file, but we faxed it over. Then his mother texted me, telling me she was getting passed around the hospital phone system and asking how he is doing. I told her he was awake, but very confused, and promised to have the social worker call her. The fact that he is awake is likely to make it harder for his family to let go, because it feels like an improvement, even though it is only an effect of lowering the sedation. He still can't breathe on his own, or sustain a heartbeat without dobutamine, and his blood pressure probably would not stay up without pressors, which can only be given in the ICU. "Why do I keep doing these things even though I know they are going to hurt?" I ask Micah. "It's like putting my hand into the fire over and over." "I do it, too," said Micah, explaining that it's because we feel so strongely for these extremely marginalized people. I think about the feeling I often have that there is an essential gap, and how I am called to stand in the gap. I can't do anything else and be true to who I am. But sometimes I think what a relief it would be to have been someone else.