Isolation, Day 6: Is everyone still wearing pants?

It feels very strange to be home and know I’m going to be here for awhile. It’s another example of what my grandmother used to tell me: “Be careful what you wish for.”

How many times did I sigh and wish I could just stay home and chill for a few days? It’s beginning to look like it could be a few months. My husband and I decided we probably could enjoy a beer with friends online via Skype or Zoom, so we’re looking into that today.

Meanwhile, I’m going to order some seeds and plants online for the garden. I have lots of work I could do out there, and if I get that all taken care of, I could order some stuff from Home Depot, get onto YouTube and learn how to do some home repair and remodeling.

What makes this hard is that I have little to distract me from this time of year, of reliving the death of one son and fearing the death of my only surviving son.

What makes this hard is that I have worked for a dozen years to try and convince legislators and policymakers how important it is to get access to health care for everyone, only to be called a commie, a radical and countless other names. I tried to speak to them, only to be arrested time and again rather than have anyone hear me.

And here we are, facing a genuine health care crisis with one of the most broken systems on the planet. We could lose 2.2 million Americans — twice as many as would die if we had done the right thing and fixed this.

Twelve years ago today, all hope of any serious time with my son was dashed, as we learned the chemo wasn’t working and there were no more options.

Mike had his third chemo appointment this morning. His doctor had told him at the previous appointment that he needed to gain two pounds before today. I had gone into the Duke Chapel to find a quiet corner and pray for those two pounds. It seemed like so little to ask. Two pounds. Two fucking pounds.

I slept on the couch at his apartment the night before so we could get an early start, and when we settled in with a cup of coffee, he sat in the easy chair across the room and sighed.

“I’m ready for this to be over,” he said.

Maybe he was, but I wasn’t. I would never be ready to lose him.

We went to Duke and he stepped on the scale.

He had lost a pound. I still remember the look on his face as he turned to me and said, “I tried. I really tried!”

This was it.

His doctor’s eyes began to tear up.

“I want you to know you’re a good person and you don’t deserve what’s happening to you,” he said. I wished his original doctor in Savannah had felt that way — it would have saved his life.

There would be no more chemo. There would be nothing but Hospice.

The physician assistant advised him to come home with me.

“Go today,” she said. “Let people take care of you now.”

As we headed back to the car, me pushing Mike in a wheelchair because he was too weak to walk, he turned to me and asked, “So, how much time do you think I have left, two weeks, maybe?”

“Oh, I hope we have more than that,” I said.

We did not.

His heart would stop, and mine would break, two weeks later, almost to the moment.