‘Was he working?’

I have spent the last nine years telling my son’s story to try and persuade lawmakers to increase access to health care. He called it “playing the Dead Kid Card.”

 

Nine years ago yesterday, Mike told me to tell his story.

It wasn’t in so many words, of course. He told me I was about to be dealt a card that was pretty hard to trump: the Dead Kid Card. He had been playing the Cancer Card for three years. Every time he didn’t want to do something, he pointed to his chemo port and said, “But I have cancer.”

It was meant to amuse more than anything else, and it did amuse him no end. But on this day nine years ago yesterday, he was serious.

“I don’t want that card,” I said.

“Too bad,” he countered. “It’s being dealt and you can’t stop it. You have to do something positive with it. You have to figure out how you can use it for good.”

I have played that card by telling his story, by using his face to tell people what happens when access to care is denied.

Yesterday, I was in Raleigh for an advocacy day sponsored by the NC NAACP. Most of the legislators I spoke to are in favor of expanding Medicaid, but one was not.

“Was he working?” the legislator asked me when I started to tell Mike’s story.

“He was working and he was a full-time student,” I said. “And he was a volunteer, and through all of it he had a 3.75 GPA.”

And then I took it one step more.

“And perhaps you can tell me when not working became a crime worthy of the death penalty. I thought that was reserved for murderers, not people who are lazy,” I said. “Oh, and I don’t know anyone who doesn’t want to work and not depend on handouts.”

He was a little taken aback, but he looked at Mike’s picture again.

“Did he try to buy insurance?” he asked.

Of course he tried to get insurance, but no one would sell it to him because a birth defect was a pre-existing condition.

He wanted to know more about this tragedy. That’s when I explained to him that this is not a unique story, that up to 2,000 families in North Carolina face the same thing every year because we haven’t expanded Medicaid.

“I’m a navigator, so I help people enroll in insurance plans through the Marketplace created by the Affordable Care Act. But if someone’s income doesn’t rise above the poverty level, I have to break the news to them that there’s nothing I can do to get them access to health care.

“Do you know what that does to me?” I asked. “Do you have any idea how it feels to tell someone they can’t have the care they need? It’s like sentencing someone to death even though they’ve done nothing to deserve it. It breaks my heart every time because I know the odds are that they or someone in their family will suffer and perhaps die for no reason other than the people in charge in their state don’t care whether they live or die.”

These are real people, dying at the rate of up to five a day, I told him. Every day in North Carolina. They die from cancer that was diagnosed too late, from complications of diabetes that isn’t controlled because the patient can’t afford the glucose testing supplies, from strokes brought on by undiagnosed or uncontrolled high blood pressure, from heart attacks brought on by untreated high cholesterol.

The legislator listened to me. I’ll give him credit for that because most of them won’t talk to me. In fact, two have had me arrested for waiting outside their offices to talk to them, as is my right under the state Constitution.

So, I was pleased that this man would see me and hear me out, that he appeared to listen to what I had to say.

After the legislative visits, I spoke at a press conference. After Rev. William Barber invoked the passage in Isaiah about unjust laws that cause pain to the poor, I invoked the Judgment Day passage from Matthew.

I envision Jesus saying to these politicians who put political ideology before human life, “I was sick and you repealed the Affordable Care Act or you refused to expand Medicaid. I was hungry and you voted to cut food stamps and Meals on Wheels …”

I don’t know if I changed anyone’s mind yesterday, but perhaps I planted a seed. Maybe that one legislator will see Mike’s photo in his mind and he’ll begin to understand that we’re dealing with real people’s lives here.

Nine years ago yesterday, it was Friday. We would have just 11 more days with him.

 

 

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