I’ve always had a terror of death. When I was 5, I’d wake up in the middle of night and run to my parents’ room in horror. I saw life as claustrophobic. I was stuck inside of life. It was a tight box. I didn’t like that there was only one way out – death – and that I had no choice in this grand exit.
As I grew older, I tried to see the positive aspects of my fear. Maybe life cannot be appreciated if its temporary nature is not contemplated. No joy without pain! No yum without yuck! Plus, dying off is the respectable and courteous thing to do, you know? How else would there be enough room?
I quickly found that rationalizing was junk. I could not get myself to think better of dying. Death sucked and was scary and contemplating that airtight ending – that closing of the curtains – made me batshit crazy.
So when I was 27, I decided to explore this fear a little more – if possible, demystify it in order to try to free myself. I researched and discovered a volunteer position called an end-of-life doula. An end-of-life doula is someone who is trained to comfort and support someone who is dying. In other words, just as a birth doula accompanies a baby into this world, an end-of-life doula accompanies a person out of this world. I wanted to become one. I’d supply someone with much-needed companionship while he’d allow me to witness his decline, his soul letting go, his journey into nothingness. I’d see there was nothing to be frightened of, after all. It’d be mutually beneficial.
I was accepted into the program, attended an eight-week course, and prepared to meet an elderly man who read Herman Wouk books and spoke of Nietzsche. Instead, in autumn of 2009, I got Jethro.
Jethro lived at a long-term care facility for people who have been diagnosed with HIV/AIDS. The nursing home is a nondescript red-brick building that gets lost among the flashy boutiques and hip bistros of New York’s Lower East Side. While 20-somethings sat at sidewalk tables sipping cold beers, not even 100 feet away through glass doors there were nurses doling out Dixie cups filled with pills; residents with distended stomachs that pulled taut their T-shirts; people bleary-eyed and restless, donning fireproof bibs in the cramped Plexiglas smoking room.
I spotted Jethro as he propelled himself toward me in a wheelchair. The first thing I noticed was his age – about 50 – and that it was not what I thought of as a Dying Age. The second thing I noticed was his nose; it was a nose that said, “hi” before the rest of him had a chance. He wore old jeans, a blue faded shirt and a skeptical look. “Why you smiling?” he said, coming to a stop by my feet.
“That’s a good question,” I said. I hadn’t even realized I was smiling. “I guess I’m trying to be friendly.” I squatted down so that we were face to face. “Did it work?”
He wasn’t what one would call especially welcoming, but I was immediately attracted to his raw curiosity. “Why you nodding?” he continued, smacking his lips.
I also had not realized I was nodding. I was nervous. My body must have been trying to deliver all sorts of diplomatic messages on my behalf. “I guess I’m trying to be agreeable,” I said. “Did it work?”
That first day, I stood next to him in the hall for an hour. We watched the nurses run around – change diapers, give showers and deliver food. Meanwhile, I was getting myself ready for the intense stuff, the end-of-life-talk stuff. I told myself I was prepared for him to flip his shit. I could be calm and hold space for him as he shouted “Why? Why? Why?” into the sky and threw his can of Ensure against the wall. I’d read Kubler-Ross’ “On Death and Dying.” I’d read “How We Die” by Sherwin Nuland. I knew how it was supposed to go.
He turned to me, finally ready to talk. OK, here goes. I leaned in. I waited. Finally, he opened his mouth: “You’re a white girl, you can get money whenever you want.”
Not exactly the heart-to-heart I was expecting.
“That’s not true,” I said.
“Yes it is.” Then he rolled himself back into his room.
During the next couple of visits, we stared at the nurses’ station, the TV, and at each other without much to say. I wanted to say to him, “Seriously, tick tock dude. It’s about time we get all Tuesdays-with-Morrie up in here,” but I wasn’t going to be pushy. Per end-of-life doula protocol, I let him lead.
I still didn’t know much about him, but it was clear that he enjoyed giving me a hard time. He often told me I was getting fat and that my hair was messy. “Why don’t you do your hair?” he said. “When you leave the house, you’re supposed to do your hair.”
My hair was in a conventional bun. “What’s wrong with a bun?”
“Didn’t you hear me?” he said. “It’s messy.”
I refused to change my hair, even though I was concerned about the guilt I might feel if mine was the last hairdo he saw and one that he’d retain, etched into the back of his eyelids, for all of eternity.
Then one day, about three months in, he told me that he was leaving. He said he was going to pack up and get his own apartment. “The next time you come, I’ll be gone,” he said.
I wondered if that was code: “I’m leaving,” as in, “I’m checking out of my earthly body. Laters, my human brethren!” In my doula class, I had learned from my teacher Amy, a veteran hospice social worker, that people who are about to die often speak about traveling somewhere. She’d recounted umpteen examples: There was the guy who wouldn’t stop talking about packing his suitcases, the woman who worried there wouldn’t be a parking spot, the old man who wanted to make sure he was the only one on the bus, the woman who kept asking about departure times and on and on and on.
So I braced myself for his death.
It was happening sooner than I expected, but you just never know with this stuff.
The next time I came to visit, I was anxious. We still hadn’t made sense of his impending end. I walked slowly down the hall, hoping his name would still be on the placard near his room number. When I reached it, I peeked around the doorframe to see if he was still there. And there he was with the TV roaring. “They won’t let me leave,” he said, calmly.
I’d read the signs wrong. By leave, he’d actually meant what he’d said: He wanted to get the hell out of that nursing home.
Over and over again in the coming months, I braced myself for his death, but he still didn’t die. Braced myself. He still didn’t die. I found out he had cancer, too. And he still didn’t die.
To break the monotony, one day I brought a deck of cards. I dealt a hand and we started playing blackjack. It didn’t matter who won, I realized what he really loved was the trash talk. “I’m going to beat your ass, Jethro.” He seriously couldn’t get enough. “You’re crazy,” he said. “CRAZY! You think you gonna win!?” His favorite was when I called him a jerk. “Asshole” put him into laughing convulsions. I saw that partly we sustain who we are from the feedback we get from those around us, it validates our identities. Apparently, he loved being seen as feisty and mischievous, which is something that’s hard to maintain as a wheelchair-bound patient. I was able to give him back a piece of himself and little did I realize at the time, he was also introducing me to a new side of myself. Each visit onward, I made an effort to slip in a “jerk” at least once.
Meanwhile, several more months passed and we still didn’t speak about The Issue, but he’d slowly opened up and we’d started talking about other things. I learned that he was from the South and came to New York as a small boy. He had a daughter. He didn’t know her age. He didn’t know his own age. His illness had given him early onset dementia. He hadn’t been in touch with any of his family for years. His favorite job was when he was a sanitation worker in the Bronx. He loved to play basketball. He wished he could walk again, go to the movies and have popcorn on his lap again, have an apartment he could call his own again. He went to jail several times. He got into brawls and had scars, making those memories tangible on his arms. He did drugs. He didn’t tell me which kind. Each time I visited, we watched “All My Children” from his hospital bed or from his wheelchair. He had a crush on Erica Kane, better known as Susan Lucci and for being such a loyal viewer, he was incongruously unperturbed when the show went off the air. We filled the void with Wendy Williams.
When I told people that I was an end-of-life doula, that I visited Jethro, they’d say, “Wow, you’re such a good person.” And I wondered if I actually was or if it was just pleasurable to be seen that way. After all, part of doing this was an experiment for my own benefit. My intentions weren’t pure and saintly. Yet going there to see him made me feel like a good person and I thought, maybe that’s beneficial too. Maybe it helps if we can see ourselves as good people – maybe that makes us better people. It feels good to be good. It’s like how sometimes just smiling, despite a bad mood, can make you feel happier.
Before I knew it, I’d been visiting him every week for more than a year. One year turned into two. Two into three. This dude would not die.
By this time, we’d developed some routines. Every time I came, he’d look at me and say, “I was just thinking about you.”
“What were you thinking, Jethro?”
“I don’t know. I was just thinking about you.”
“Well, I was thinking about you too.”
And it was true. I thought about him all the time. I saw him more often than most of my friends. He was there for landmark moments in my life. He knew all about my wedding preparation and the frustration I was feeling in my career. When I came back from my honeymoon, he said, “Are you expecting or did you just put on?” By that point, his weight comments were actually funny. He was like an older brother, prodding at my weakness.
By this time, he could no longer play blackjack – his hands had become weak and his mind unfocused – but we still trash talked as if there were constantly a high-stakes card game in the works.
He loathed wearing his dentures so he’d eat his cheeseburger with his gums. He knew it made me nauseous, but he’d maw it all with his mouth wide open. He’d explode with laughter and half of the chewed-up mush would come back out at me as shrapnel.
And after all this time, he still didn’t bring up death. I always asked him how he felt, giving him an outlet to speak his mind, but he’d just smack his lips, look at me and say, “I’m fine,” or “I’m good.” He said he didn’t like people who complained. It was no one’s business anyway. “But you have to tell them how you feel, so they can help you when you’re in pain,” I said. He’d just wave it off like the tumors metastasizing inside of him were a bunch of pussy butterflies. I’m not proud to say it, but I’ve winced worse with gas pain.
He still talked about leaving and getting his own place. “How you going to find me when I’m gone?” he asked. I asked him to leave me a note and told him I’d ask around. “I’ll find you,” I said. I wasn’t going to tell him that he’d never make it out of there. It’s good for people to have hope, right? And what did I know? We’d been hanging so much longer than what was projected – one year at most – that I was starting to think he might eventually be able to move out of there, too.
Then one day, he stopped talking in the middle of a sentence, his eyes widened. He gagged a little and then vomited all over himself. I was repulsed and moved backward at the same time I wanted to run forward and cradle his head, puke be damned.
Finally, after three and a half years, the stuff I’d been waiting for all along – all that dying stuff – started to happen, only I wasn’t interested in it anymore.
He lost his desire for modesty. He didn’t get dressed anymore, just in his gown and his socks. He didn’t care if I saw his diaper. He rarely got into his wheelchair.
He was saying all these premature things, like, “I’m glad I got to know you,” and “I miss you.” He also started repeating things over and over again. I said, “You can’t miss me, I’m right here.” He said, “That’s true. That’s true. That’s true.”
When I came in to see him, he often looked startled. Terror in his eyes and his forehead wrinkled. He made noises and I was compelled, almost as if in some instinctual maternal way, to copy his noises like one does the babblings of an infant. I wanted to coo at him and rub his head and tell him, “It’s OK, my sweet baby. It’s OK.” But it wasn’t and I didn’t want to lie so I tried to communicate everything – support, concern and reassurance – with a look in my eye.
I asked him if I could rub his leg. I said, “Does it feel OK?” He said, “Feels good. Feels good. Feels good.” I caressed his hand. His back. He said, “I don’t want to go to that place,” and I was thinking, what place? He said it was a bad place. Death? Hell? What? He was seeing people. Seeing things. “They want to hurt me.” It’d been happening for a couple of weeks. His eyes, darting back and forth, looked through me, following something I couldn’t see in the room.
I kept thinking he’s so bad off, he’s going to pass, but then he didn’t and it got worse. It can’t get worse than this. Then it did. That happened several times.
The nurses left the TV blaring behind him. He didn’t look at it. He was retracting from this world. This time. This place. They were extending his stay here by pushing a constant line of pink goop through a newly implanted feeding tube in his navel. I wondered if this tactic made sense. The night before, my husband and I had a talk while we sat on the fire escape. “Would you want your life prolonged if you were in constant excruciating pain?” I honestly couldn’t answer. I didn’t know. I wanted to say that I’d want to gracefully let go, but I felt deep inside that my eyes would grasp onto the light in this world like iron fists while my body and mind went to pieces.
He became so skinny I could see his anatomy, where his mandible tucked into his cranium. I could wrap my hand around his thigh. There were pillows stuffed underneath, on top, to the side, everywhere so his bones didn’t grate together. There was so much extra space around him, which was once filled by life liquid and form. Even his scars shrank. His nose no longer greeted me first. It was his protruding eyes. I had no idea until that moment how small a grown man could become.
Then I came in one day last June and he wasn’t there. They said he’d become unresponsive during the night and was transferred to the hospital. Because there are no formal channels for death doulas – they are not yet part of the fabric of the healthcare system – every time Jethro went to the hospital, it created a minor shit show to find him. Due to HIPAA, the nurses weren’t allowed to tell me. Finally, after locating him at Beth Israel, I went to see him. He was in the medical intensive care unit and there were all these other patients there in real bad shape. Real bad. And the hospital is supposed to be this clean and sterile place, but it felt so dirty. Everyone’s colostomy bags were hanging on the edge of their beds. They were each little window displays, demonstrating what makes us mortal. I spotted Jethro and he was plugged into so many tubes – something for every orifice – that he looked like an electrical outlet at a tech conference. A machine was breathing for him, inflating him up and then letting him go flat.
Even though he was deemed “unresponsive,” Amy told me I should talk to him anyway. “Hearing is the last sense to go,” she’d said. I looked across at the other side of the room and there were a bunch of young adults talking to their father. He was awake and with all his tubes, he was an outlet, too. And his kids were distraught, but sweet: “Daddy, it’s me.” “Daddy, don’t go to sleep now.” “Daddy, you can’t take out the tubes.” It all made me cry, because this was life. This is the part we hide, yet seeing it makes it no better. Maybe there is no yum without yuck, but getting to know yuck didn’t seem to make it any more palatable.
I looked down at Jethro. I didn’t know what to say. “I didn’t do my hair today,” I said, slightly laughing to myself, realizing we had a whole repertoire of our own personal jokes. If I was more together at that moment, I would have told him this: It’s going to be weird, off-putting, strange without you here to visit. I realize now that this was never about death. You’ve shown me that time doesn’t always have to be turned into an accomplishment. That knowing and caring for someone is a form of immeasurable success. That you can create love, a love that didn’t exist before, simply by walking into a nursing home and nodding your head yes. It was an honor to know you, to witness you, at the end of your one very singular life.
I went to the hospital again the day after. Jethro’s eyes were open a sliver. Or did I just imagine that? There was a tear, dried into white crust, imprinted down his left cheek. The nurse said it wasn’t a tear. She said it was just excess water in his eyes, which may have released. When I held his hand, he closed his eyes. Or did I just imagine it? I felt like he knew I was there. I’m here for you, Jethro. It’s so good to see you, Jethro. It’s hot outside, Jethro. I miss you, Jethro. You’re a jerk, Jethro.