One day

 

Me and Mike on his wedding day.

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.

 

 

 

One final belly laugh

Mike being Mike. His main mission in life was to amuse himself and others. He was a proud jackass and I still believe he chose to leave us on April Fool’s Day.

 

It was Sunday on this date 11 years ago. The crew from Savannah spent the morning and early afternoon with us, and when Mike was tired and needed a nap, they headed back south.

I took the opportunity to soak in the hot tub for a bit with two friends who were helping Mike plan his memorial service. He didn’t want to leave anything to chance. That service would reflect his desires for a funeral he’d be sorry to miss.

As we came back into the house, there was an insistent knock on the door, as though someone wanted to deliver an urgent message. When I opened the door, there was a woman I’d seen drive by a couple times, but I didn’t know her. She was tastefully dressed, a little overweight, had an unnatural shade of blonde hair and way too much makeup.

“What the hell are you doing parking all these cars on my street!” she demanded. “People have to drive here, you know. You don’t own the street and I’m getting tired of dodging all these party cars! I don’t know how long you’ve lived here, but you should know we don’t put up with that in this neighborhood …”

She ranted on for a minute or two and when she finally stopped to take a breath, I spoke.

“First of all, this is not your street. My taxes pay for as much of it as yours do,” I said.

She opened her mouth to speak again, her face still angry. I held up my hand.
“Nope,” I said, “I’m not done. These cars belong to friends of my son. They’ve come to say goodbye. He’ll be dead in a few days and then you can have your road back.”

I started to close the door and she put up her hand to stop me.

“Wait! Oh my god! Is there anything I can do?”

“Yes,” I said sweetly, “you can drive carefully so none of these people has to the add the burden of car repairs to that of the grief of losing a friend.”

And I closed the door.

Even 11 years ago, some people were mean-spirited by nature and not afraid to show everyone they encountered that they wanted people to do everything their way.

Later another neighbor would see me outside and ask, “I saw a lot of cars over the last week or so. I know it’s not always a good thing, so I just said a quick prayer that everything’s OK.”

Now, that’s the way to ask why there are so many cars parked on the street.

The nasty neighbor has never spoken to me again.

Mike woke up a little while after the angry neighbor left, and I told him what had happened. He had a good laugh over that.

“Oh, I wish I could have seen her face,” he said. “I’ll bet she was horrified. Good for you, Mom. Good play.”

It would be our final Cancer Card moment, his final belly laugh.

In 48 hours, he would be gone and I would never hear that laugh again.

When people tell me we should fix health care gradually so businesses and the economy don’t get hurt, I ask why they want to put the welfare of corrupt insurance companies and Big Pharma over that of the 35 million Americans who still don’t have access to health care, plus another 12 million or so whose insurance has such high co-pays and deductibles that they can’t afford to use it. That, after all, is the very basis of fascism — money over people, the good of corporations above the welfare of human beings.

Some 30,000-plus people are dying every year the same way my son did. and we have done almost nothing.

Yes, insurance companies can’t deny people with pre-existing conditions insurance anymore. In states where Medicaid has been expanded, poor people finally have real access to care.

But Big Insurance and Big Pharma don’t want these changes to stand and they’re paying out huge amounts of money to walk back what little ground we have gained.

Every day we don’t fix this, people die unnecessarily. Every damn day, more family members and friends go through the hell my family and I have gone through. In fact, about three times every hour, another American dies of lack of access to care, just they way my precious son did.

As I count down these days again every year, I spend a good part of my time in tears.

Why can’t we see that people shouldn’t be dying like this when it would actually be cheaper to take care of them — both economically and morally? I tried to explain this to someone yesterday who just said, “I don’t believe you. We can’t afford it,” and turned her back, completely unwilling to listen to anything not sanctioned by the liars at Fox News. I wanted to scream, to call her a fucking fascist, but I walked away instead.

On this beautiful spring day 11 years ago, I so desperately wanted to hold onto him. I still wish I could go back and get him. I think I’d want to take him along on the coming cross-country road trip with my pregnant granddaughter. I can’t even imagine what an adventure that would have been.

I tried to soak up all I could of him during these final days.

On this Sunday 11 years ago, everybody cleared out. James, Mike’s closest friend, and Janet, who still loved Mike and who was still adored by him, went back to pick up mail and check in with their bosses. Janet’s boss would fire her for not coming in on Monday; James’s boss told him to take whatever time he needed. They were both planning on returning Wednesday. Mike would not be here to greet them.

On this beautiful Sunday 11 years ago, we would have just two days left with Mike.

 

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