Dying

Death is amazing to watch.

I went last night to visit a friend who has faced, fought, accepted, and been taken over by cancer. Two weeks ago he was still saying that he was happy when he was awake, and that his social calendar was packed because “all this dying stuff is hectic.” Soon, though, his texts grew less coherent. I went to visit and he said that he wasn’t happy when awake any more. As he withdrew into his body’s processes, life was not fun or joyful or interesting anymore. It was a painful chore and he was desperately frustrated at being sick and in pain and feeling terrible for four years.

Over the weekend he started hallucinating, wandering, and terrifying his family. He didn’t make sense, he couldn’t understand, and he wasn’t safe. The hospice nurses came and monitored his meds until he settled. So what I visited two days later was the mostly-dreaming, mostly-gone version of my friend. He looked relatively healthy, and had the same adorable, shiny red cheeks and red beard he was so proud of. There wasn’t much left to his body, but his face was still his face. And as he writhed and settled and writhed again, it looked as though he had a terrible flu and was feverish but would recover.

I sat with him and tried to talk. I rubbed his wandering legs, trying at once to reassure him and to encourage his dream of walking somewhere. I’m rarely at a loss for words, but I’m not well versed in what you say to someone who can’t reply, who doesn’t care about most of the world anymore, and who is almost across a threshold that our culture goes to excessive lengths to avoid.

I wasn’t worried about saying anything wrong. And I wasn’t worried about trying to comfort him. I just wanted to talk the way we usually talk if only so he felt normal for a moment or two.

I talked about his kids and what kind of people they might be as adults. He made faces like he was talking. I talked about how Spring has walloped us, even after a month of warm and sunny, with that flawless Berkeley wall of sunshine and wisteria and star jasmine that makes me feel like a honeybee skittering around telling colleagues about the best pollen sources. He winced. I asked about the garden: what his wife might plant and whether he was glad he’d done all that work to build their raised beds. He kicked as though he were walking.

I told him about a school project my son had done, and how adorable it was. He grew agitated. I asked if he wanted quiet. I guessed from his relaxing that he did. He rested fitfully and I watched.

His breathing is surprisingly smooth for someone with a lung tumor so large it forces his ribs aside and creates an A cup on one side of his chest. Weird. About five inches above his mastectomy scar.

His wife came in and smiled at me. I told her how agitated he seemed. “Pain meds,” she said, “are due.” She talked to him and asked about his pain. “Does it hurt?” she said in a regular voice into his ear. “Yes,” he mouthed. “Is that a yes? Yes. It hurts. Hang on, baby.” She told him about each medication before she placed the tiny veterinary syringe in his mouth. I gave my cat morphine with an identical plastic syringe last year. Now the morphine is for my friend, with whom I can no longer share anything. No calls, no texts, no visits. He is mostly gone and that is permanent and that is normal and that isn’t strange but it’s unfolding rightnowrighthere. A few other meds, including the one she warned him would taste gross. He made an angry face and kicked at that one. I rubbed his legs.

He began wiggling and wincing. She asked if he hurt. He tried to say something but made no sound and his lips seemed only to say, “vipp.” She asked if his back hurt. He looked as though he’d cry. His back has been terribly painful since the lung surgery that required removing three ribs, 5cm of chest wall, and a baseball-sized tumor. The one the first oncologist missed while treating the rectal tumor, both of which grew because two physicians in a row misdiagnosed him.

“Do you want to roll on your side?” He nodded. We took the sheet and maneuvered him onto his side. It seemed to help. I pulled him over as hard as I could while she jammed a large pillow behind him. Only nurses know how firm and decisively you have to handle an adult patient. Most of us know only nursing teenie tiny newborns with no muscle tone who are relatively easy to position, reposition, and relocate, even if they’re just as hard to understand as an adult who can no longer speak. Getting a full-grown man into position takes so much oomph it seems rough, but I worked to seem just as competent as his wife. Repositioned, he settled a bit. She asked him if that was better, rubbed his shoulder, kissed him repeatedly across the face.

We talked with him a while, and he seemed to settle.

So we went downstairs to let him sleep. Two hours later, I left with a smile, a hole in a deep part of me, and three bags full of empty food containers from mutual friends who’ve cooked for the family over the past two months.

On the midnight drive home I thought about my kids. I thought about his kids. I thought about logistics and seeing their family often. I thought about work and geography and weather and Crimea. I thought of car crashes and cancer and bombings. I thought of gummy bears and law school and literature PhDs.

I can’t tell you that watching my friend die week by week has made me more aware of how lucky we all are to be alive. I’ve had my fair share of close calls, of fire and car crashes and cancer and earthquake, and I’m not one to take the day for granted. But I think more about how a fair percentage of the world’s population wouldn’t consider themselves lucky to be alive. Starvation and illness and lack of clean water and tyranny and abuse and slavery and rape…we all live. And we all die. And none of death is fair or fun, and none of it’s predictable. The fact that my friend is dying way too young is also a part of life. And often, it feels as though none of life itself is directable. There’s a fundamental lack of control to being human that belies most of what we tell ourselves about choice and free will and possibility.

But then there’s love. And there’s a thoughtful couple facing death together. An open, honest, loving family that does their best and makes it work and grieves together and hopes together and plans together and fights together and mourns alone and together and alone again. There is grace in watching a woman love her partner fiercely and love their kids fiercely and stumble and get up and get more fierce…and do it all day every single day for YEARS.

How we die is a microcosm of how we live. And those who panic and claw the walls of their death-bed die in fear. And those who dream of all the wonderful moments of their lives, hallucinate huge family gatherings where those linked by affection for each other cuddle babies and encourage children and jovially engage  each other? They die bathed in the disintegrating brain that is full of good memories and love and joy. When all that crumbles into their body, really, it’s rather sweet to watch. Dreamy sleep eating, incoherent laughing, planning joyful events with beloved touchstones.

Which way will we go? Will our dreams at death’s threshold be painted with the vivid memories of happy, communal gatherings with good food and joyful moments? Or will our death be a nightmare of fear and regret and longing?

Death is interesting to watch. Why does our culture teach us not to dare?

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27 thoughts on “Dying

  1. Your experience is one not many people have or allow themselves to have. To watch, almost objectively, someone slowly slip away. I think many people on both sides of death are scared of the loss, the leaving. I wish there was a way to make it an easier process, and your blog helps.

    • Let me be perfectly clear, though, that being allowed to watch so intimately and interact so genuinely with him is due in large part to their amazing life outlook, personalities, and willingness to share. I’m guessing a lot of spouses have watched this way. But I’m not a partner. I’m just a peripheral friend.
      Thank you, though, for finding something useful in this process. Death is not easy, but it’s so fundamental to who humans are…

    • Oh, we’ll all still fear it. He was really scared during different phases, especially for several months after a Stage IV diagnosis. But he told me one day, when I was driving him to radiation treatment number 50 or so, that he was finally okay with the idea because he *knew*, finally knew, that his kids would be okay.
      That was a remarkable thing to hear.

  2. I can’t put in writing what I felt when reading this. Thank you for being so upfront and please thank your friend and spouse about their openness

    BNM

  3. Is it the permanence that this culture of ours fears? The fact that when it comes right down to it, we are not in control? Your words, as always, lead me to think.

    • The permanence of death? I think so. And I believe it has to do with our culture’s insistence that everyone is different, unique, and special. If that is true, aren’t we important enough to stay alive forever? I think there is substantial fear perpetuated by our overall “talk about heaven but not the journey”. And religion’s cruel threat of hell worries people.

  4. I think you really put your finger on something fundamental when you point to the loss of control as a factor that engenders fear. Our culture stresses the need to be in the driver’s seat, to “control our destiny” and “make things happen.” Many of us don’t know how to gracefully allow life, and death, to happen to us. I’m working on it. Sounds like your friends are doing it much more successfully than most of us. Beautiful, thoughtful post; thank you.

    • Thank you. They’re inspiring. Grace seems now to me about going through the appropriate emotions and struggling with all the anger and hurt and mourning and unfairness and gratitude in waves, and letting them crash. Not trying to hold back that which overwhelms, though not necessarily welcoming it, either. But taking a deep breath, holding hands, and breathing while it happens. Because it happens TO you, doesn’t it? There is no control, at all, in death. None.

  5. This is so beautifully written I ache with the loss and the extraordinary opportunity you have to embrace this experience. I am so glad you are writing about it. You’re amazing. Please come to my death bed.

    • Thanks, Christie. I haven’t been in three days, and I’ve missed all the scary and ugly and unbearably painful. I’m now regretting that I’ve romanticized death, because being eaten away by cancer isn’t an easy way to go. Popping in for three hours isn’t the same as being there, without cease, for years. So I hope I haven’t set you up for disappointment on your deathbed. The one you really want is his wife, and she’s done her share for this lifetime.

  6. Thank you so much for sharing this story. I went to high school with Adrienne and she is such a wonderful person. I knew her husband had cancer, but I now know the extent of it. God Bless Jay. I will be keeping them both and their family in my thoughts and prayers. I am so sorry Jay has been in so much pain. It is heartbreaking. I will be praying that God will wrap Jay in his arms, and bring him to Heaven and out of his pain, and that He will bring Peace and comfort to Jay’s family and friends when it happens. God Bless this AMAZING family.

  7. I had a similar experience, but instead of a spouse it was a sister. Your account of it reminded me of watching the same type of interactions I watched and reactions I had to it all. Thank you for describing it so eloquently, matter-of-factly and in my opinion perfectly.

    • Oh, Jenn, I’m so sorry to hear about your loss.
      I am really hoping today, as he’s in a palliative coma, that I didn’t romanticize the process. They were both so amazing about his journey. Rotten, awful, unfair, stupid, dreadful journey.

  8. Doesn’t strike me as romanticized; just thoughtful about how we handle it. Having been at a few deaths, I agree that the only way to survive is to understand that there’s little to do but feel what you feel, when you feel it. It can be awkward and ugly and uncomfortable and full of pain, and absurd and surreal, and often morbidly funny, all at the same time. We can only slog through and forgive ourselves if we don’t live up to our expectations of how to handle it. And yes, I think grace can mean acceptance when there are no other options. May we all have, and be, strong and loving partners in life and death.

  9. Christine, this was an amazing piece to read. You have brought me to tears for a man and woman that I don’t know. I will pray for peace and strength for your friend Adrienne’s and for their children. xoxox

  10. This was so interesting to read! I just went through this same thing and it although it was extremely painful for me to witness, it was also very interesting. My uncle just succumbed to all over cancer and it was a very short albiet very hurtful process. Watching him deteriorate seemingly worse every hour was mind numbing but it was definitely an interesting experience and I will never, ever forget that. It for sure taught me a lot and it has really made me appreciate life a LOT more.

  11. Pingback: Seven years | Naptime Writing

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