I read a science fiction book a long time ago called The Harvest by Robert Charles Wilson. The story was about an advanced alien race who came to Earth offering humanity the chance to embark on a voyage of discovery throughout the universe. Each human is given the individual choice to join the race, a process which involves evolving into something else — something beyond the our limited bodies and much more mentally advanced. The story focuses around a man who said no to the choice and his observations of the disappearing world, including watching his own daughter as she slowly lets go of her humanity. The people who chose to go with the alien race stop engaging with the world over time and eventually just became shells of themselves until they were eventually just released of their bodies.
Crow’s decline from cancer reminded me of this book because that’s what it felt like as I watched him slowly withdraw from the world. Before he even went on hospice, it was a struggle to get him to leave the house. He would want to back out of commitments we made and stay home instead. In May, we went to Chicago to see U2 after I had to persuade go (contrast that with the previous year in which he begged me to take him with me to a Pittsburgh show only I had tickets for). He had fun while we were there, but he could no longer tolerate the noise of a concert and had to leave mid-show during the first of two concerts, even though he was wearing his ear plugs (which dampen concert noise – I use them too). We managed to get out the next day and walk around Chicago, but Crow bowed out of the second show, staying instead at our Air BnB where he, of course, spent his time alone sleeping. The next morning at breakfast, he had to leave the restaurant because even the ambient chatter of the other diners was too much for him. That was our last big trip together.
A few weeks later, I was doing yard work, with which he’d planned to me help me that day. I spent most of the day working alone. Crow tried twice to get up and do something, even something small, but he kept going back in the house. “I’m just too tired,” he’d said. “Man, I just can’t get over how tired I am.”
Sleep became the only thing he wanted to do. When I wasn’t around prodding him — if I went out to something he’d bowed out on — he’d spend his time sleeping. As his periods of sleeping extended, he no longer fought them or complained that he wanted to get up and do something. He just stopped caring about participating in the outside world, it seemed.
I didn’t realize right away how bad it was getting until the week before his last checkup… It suddenly occurred to me as I watched his body shrink that he was no longer getting up in the middle of the day to make himself lunch. I rallied neighbors and friends to drop in on him and bring him lunch. The reports I got back from them indicated that he seemed a bit unstable on his feet and confused. I just hadn’t realized how bad it had gotten because I saw him every day; the changes happen slowly over time and I’d just started to accept each of them as normal.
I guess a part of me kept hoping that somehow he’d get magically cured, even as I became more aware of his decline. His death was something I’d refused to face from the beginning. I didn’t want to confront the widow in me yet again. I was the person who was not being realistic… who kept avoiding talk of death and who refused to look at cemetery plots with him until he came to me on his own with a cemetery already chosen. He knew his death was coming while I just kept thinking I could make it go away by ignoring it.
I never could understand that moment of acceptance. I always pictured myself exiting life kicking and screaming and hanging to life with every last shred of my being. But cancer doesn’t work like that. Cancer takes bits and pieces of you away with each passing day until you have very little left of yourself to hold onto. And, as I observed, the cancer patient reaches a point where they just accept what is happening… and maybe, I don’t know, maybe they see a greater horizon that is out of sight from the living… a place where the pain and suffering has passed. Or maybe they don’t see anything and they just don’t care.
Hospice calls the last stage of care “transitional care.” This term seems to support the idea that we don’t die, we evolve into something else, like the characters in Wilson’s book.
The most isolating thing about a dying person for a caretaker is the slow disconnection with the outside world… I woke up every day, got him cleaned and breakfasted, and then I went straight to working remotely at my job. I felt like I always had one foot in the real world and the other foot in this world of terminal illness. I felt split in two. I struggled — still struggle — to understand how he could just stop being involved.
Food was the last thing Crow let go… Up until the weekend he began “transitioning,” he would make a noise of delight when I placed something he liked in front of him — fruit, chocolate drinks, ice cream. I loved those moments because I felt like we were still connecting and that he was still here in this world. When he stopped eating the food I gave him, it was another sad sign of his slipping away.
I kind of knew he was done when we ice cream stopped making him excited. His disease made it impossible for him to communicate and I often wondered what was going on in his head. Were there things he wished he could tell me when all he could say was reduced to: oh, wow, no, ouch, and yes?
Every step of his disconnect hurt. This man was previously so engaged in the world. When he stopped caring about the simple things, I was just crushed. I couldn’t handle it, like the character in the The Harvest. I don’t know if I’m jealous that he understood and accepted his death or if I’m just angry that he didn’t — couldn’t — fight harder. I feel like we lived in two different worlds in those last months — mine was the world of details, of weeding gardens and mowing lawns and cleaning the house and keeping a job so that I could support us both. His world was of not caring much about any of those details. What did he dream about in his sleep? Did he dream at all? Did he still even care that I was there? Did he care that he was leaving me, or was he ready to go even if going meant he went into oblivion?
I’ll never know. Two people who talked about everything in the world went to becoming almost strangers in the shadow of the cancer cells multiplying themselves in his brain.