Today was Monday in 2008, Mike’s last full day with us.
The house was empty except for Rob, Mike and me, and he seemed to appreciate the quiet. He was allowed to smoke in the house because as much as I hate tobacco, I was not about to deprive him of it.
Somebody, I don’t recall who it was, had suggested in these final two weeks that he should quit smoking — conquer that final addiction — before he died. His response was to smile and light a cigarette. He didn’t want to die totally virtuous, after all.
There wasn’t much left he could eat, and none of it was particularly good for him. He could still drink coffee with almond milk. He also could take a few bites of Frosted Flakes doused in chocolate almond milk. And he could nibble on good chocolate. He had given up Cadbury Creme Eggs because everyone knew they were his favorite candy and we were inundated with them. For years, he had bought all he could in the weeks before Easter, claiming he would make them last until the next spring. But they were usually gone within a month of Easter. During these final few weeks of his life, it seemed no one crossed the doorway to his room without an offering of a half dozen or more.
Finally, a few days before he died, he told me he couldn’t eat another one.
“I’m Cadbury Creme Egged out,” he said as he gazed at the one in his hand. “I think I’ll have to wait until next … ” he paused and looked up at me. “I think I’ll have to let other people have them. I keep forgetting I won’t be here next year.”
It was said matter-of-factly, as though he had forgotten his raincoat on a drizzly day. But it slapped me in the face and forced me back into the moment. I had to live in the moment because I had so little time left to do that with him.
Rob went to work that evening and Mike and I watched Star Trek and nibbled on good dark chocolate. We watched an episode from the original series and then the episode of Deep Space Nine where the Klingon character, Worf, joins the crew.
“You know, I’m having a good time here,” he told me as Worf stepped onto the space station on the television.
Here he was, confined to a hospital bed in a small bedroom. His life had been reduced to a tiny room with a bed, a dresser, a single chair and a TV, and he managed to find joy.
“I have everything I need here,” he said. “I have my TV, my Playstation, Boo Bankie, Idiot Bear and you, my personal valet.”
Boo Bankie was the tangled remnants of the blanket I had crocheted him when he was a kid. As it had unraveled, he had tied the ends together until it resembled a blue football-shaped mass with bits of red in it. I still have it under my pillow.
“I’m not sure I’ll ever be able to complain about anything again,” I told him.
“Oh, I have faith you’ll find a way,” he said, smiling.
If only we’d been able to get him the screening tests he needed. If only he’d been able to get health insurance. If only even one doctor in Savannah had given a rat’s ass about his precious life. If only we hadn’t lived in the most ignorant and immoral nation on Earth when it comes to health care.
Here we are, the richest nation ever to exist and we can’t even offer the basic level of health care to our people that every developed nation — and even some developing nations — offers its people. Our health care outcomes are the worst among the developed nations, and worse than many developing nations, even though we spend about double per capita what other nations spend. How can people not understand that?
People still tell me we can’t afford it because they believe the lies put out there by Big insurance and Big Pharma. We could have saved my son’s life for a fraction of the cost of allowing him to die. We could save tens of thousands of lives every year, one precious soul at a time, instead of killing them with criminal neglect.
Mike was developing a pressure sore on his elbow. He didn’t want me to bother wrapping it in soft cloth, but I insisted. Lifting his arm was like picking up a broomstick. He had no muscle left.
When I finished wrapping the sore, he sighed.
“You were right,” he said. “This does feel better. Thanks.”
He closed his eyes and drifted off to sleep. I sat and watched him for a little while, just trying to be present in the moment. I knew we had few moments left.
On this day, in this moment, I had just 18 hours left with him.