
Mike was a proud, unapologetic jackass, and it served him well.
On this day in 2008, I brought my son home to die.
We had been told he needed to gain 2 pounds before his next chemo appointment, and he had done his best to eat anything he could tolerate, but when he stepped on the scale, he had lost another pound. I’ll never forget the look on his face, as he said, “I tried, I tried.”
I remember Dr. Hurwitz choking up as he said, “You’re a good person, Mike. You don’t deserve what’s happening to you.” I couldn’t help but notice the difference between this and the Savnnah doctor’s cavalier attitude as he told Mike there was nothing more he was willing to do (I also remember dropping an F-bomb on that thoughtless monster).
The nurse tactfully told Mike he didn’t have much time left and that he should go home with me that day, which relieved his roommate and best friend, James.
“I’ve been so afraid I’d come home and find he had died while I was at work,” James told me.
As we were leaving the clinic, Mike turned and looked at me.
“How much time do you think I have?” He asked. “Maybe two weeks?”
“I hope it’s more than that,” I replied.
When we got back to his apartment, I called his father, who had survived stage 3 colon cancer and couldn’t seem to grasp why Mike hadn’t. I lost my cool a little as I explained that he’d had all the access to care Mike didn’t have. He had money to make co-pays and deductibles. He had the top-of-the-line medical insurance, while Mike only got Mediaid after he moved and left his wife. He had to leave his wife, I reminded his father. I gave him a moment to allow that to sink in, but it didn’t. He kept insisting there must be something we can do because he was so damned used to being able to buy whaterver he needed and he assumed the rest of us enjoyed that level of privelege.
“What can I do?” he wailed between sobs.
I lost it.
“You can send him some fucking money!” I said. “He has lived in poverty for the last three years while he waited for approval for his disability — which we’re still waiting for, by the way. Meanwhile, everyone else supported him. We fixed his car, we paid his bills, we bought him clothes. You gave him a loan that came with a lecture on the importance of repaying it. It’s too late for you to do anything of consequence. You had your chance and you blew it.”
I was surprised at how angry I was. I wanted to feel regret for what I had said, but I didn’t. I still don’t. But I did make sure he had the chance to come and say goodbye to Mike, and that it was a good visit.
It was a three-hour drive from his apartment to my house. He told me he was glad he didn’t wait longer to come. I got it. Coming home meant he was ready to die, when he loved his life so damn much. Whatever he was put here to do, he had done it.
I didn’t know how much time we had left, but I knew it would be measured in days, perhaps weeks. Until then I would soak him up. Every wisecrack, every cackle, every goofy moment.
It turned out he was right on our way out of the clinic. On this day in 2008, we would have just two more weeks with him.
His first disability check would arrive nine days later, 37 months after he applied.
Just short of two years later, the Affordable Care Act would pass, forcing insurance companies to cover people with “pre-existing conditions.” Insurance companies wouldn’t have to cede much power, as it turned out. The average family deductible for an employer-sponsored policy is over $3700 at a time when nearly half of Americans report they can’t pay a $400 surprise bill without borrowing money. People still can’t afford care.
While most states have expanded Medicaid, it could become a moot point as the current administration plans to slash its funding. Tens of thousands of Americans die every year just the way my son did in 2008 — probably more than 2 million since he died — and the current administration is planning drastic cuts.
The bad news 17 years ago was that my son was dying; the bad news today is that things are even worse now.