Playing the ‘Dead Kid Card’

Hours after my third arrest, I spoke at a press conference about why I needed to speak to legislative leaders about access to health care.

The entire time my son was sick — just over three years — he played the Cancer Card.

If we asked him to do something, he whined, “But I have cancer!”

The expected reply from friends and family was, “Cancer, schmancer.”

He did this in public, at grocery store checkouts and anywhere it might get attention.

He loved attention.

But a week before he died, he sat me down for a talk. It started with, “You know, you’re being dealt an untrumpable card.”

“Excuse me?”

“The Dead Kid Card, Mom. You’re being dealt the Dead Kid Card.”

“I want nothing to do with that.”

“Too late. It’s being dealt. Now, what are you going to do with it?”

I didn’t want to talk about this. In fact, I was laboring under the misguided impression that my heart would stop when his did. I wouldn’t have to deal with the dead kid card because I was going with him.

But what if my heart kept beating?

I panicked. I couldn’t face life after he died, and he was making me think about it.

“OK, I’m going to work to make sure every human being has access to the care they need and I’m going to tell your story to further that goal.”

“That sounds good,” he said. “You have my blessing. Now, can I get a cup of coffee? I have cancer and I’m dying.” He smiled and settled back into his pillow.

Of course, my heart didn’t stop when his did. I sat there and wished it to, but it wouldn’t. So I got to work.

I tell my son’s story at every opportunity. I spent nearly 30 years telling other people’s stories as a newspaper reporter. I am a firm believer in the power of stories to explain complex policies and their effects on real people. My stories changed local and even state policies several times during my career. Now I had the most powerful story imaginable to tell — the story of how an extraordinary human being died from neglect.

If you want to say people who need health care are “just looking for a handout,” Mike’s story disproves that. He never wanted a handout and it was only his own experience that made him realize how important it is that everyone has access to care. He had been pretty much a Libertarian before that, determined to take care of his own needs — until he realized that wasn’t possible in a system like ours, where medical care is too expensive for anyone who isn’t fabulously wealthy to afford.

I started telling his story. There were those who accused me of lying, who refused to believe my son — or I — deserved any sympathy. The local Tea Party tried for more than a year to get me fired from my job as a newspaper reporter because they saw how dangerous his story was.

On the morning of my fourth arrest, I walked with interfaith clergy as we carried a cardboard coffin to protest attempts to repeal the Affordable Care Act during a rally on Capitol Hill in Washington, D.C., on July 25, 2017. RNS photo by Madeleine Buckley

I left my job — I volunteered to be laid off — 16 months after Mike died so that I could tell his story in public and demand something be done about our broken health care system. President Obama was working on health care and I wanted to be in that fight. I had been under a great deal of pressure to include the lies of the Right in my stories, unchallenged, as though their unsupported beliefs should carry as much weight as the truth.

I told Mike’s story across the state and in Washington. I was on national TV and speaking at large rallies, and I knew Mike was with me.

When Howard Dean took his photo at a rally of 5,000 people and the crowd started chanting his name, I could almost hear him laughing and chanting, “Yeah, Me, Me, Me!!”

Telling the story again and again is exhausting. It’s emotionally draining and it’s painful, sometimes even physically painful.

But I do it over and over and over because I have the Dead Kid Card and I have to keep playing it. People have to know that good people die when you take away their access to health care.

This summer, after I told his story again at a political rally, a woman approached me.

“You’re going to think I’m crazy,” she said, “But I have a message from your son. He’s very, very proud of you.”

I smiled and thanked her and began to turn to walk away.

“Did you know he stand behind you while you speak?” she asked.

I turned back.

“Excuse me?”

“He’s right behind you when you speak and he’s smiling. He loves being the center of attention, doesn’t he?”

I choose to believe she’s not crazy.

I choose to believe Mike is with me, and when something stupid happens (think of a flat tire in the pouring rain), I can almost hear him laughing.

This most recent fight for health care has drained me more than any of the ones before it. These murdering thugs in Congress never cease to amaze me with their efforts to strip tens of millions of Americans of their health care.

Lately, they have tried to stop me from having Mike’s photo with me. Mark Meadows’ people tried to confiscate it when I wanted to get into his town hall. I was taken out of the Senate Gallery in Washington because I had a 5×7 photo of him (with no frame because God knows I could jump out of the gallery and slash all the Republicans’ wrists with the broken glass before anyone could stop me), which they called a “poster.”

Mike’s story is powerful. I know that, and I use it to try and make people understand that good people die horrible deaths when they’re denied care.

I play the Dead Kid Card because it is the most powerful card in my deck, and I will not stop until every person in this country has access to affordable, quality health care.

No one deserves to die the way my son did. No one.

 

 

3 comments

  1. William Fore says:

    What a wonderful story and it will be nice if the Right stops lying about our first fix of our broken system. Even the doctor/ politicians are lying to this country.

  2. Kaola Smallwood says:

    I am so proud of you. Let’s keep fighting!!

  3. Deborah Comptom says:

    Leslie, I have known about your son’s death for years. This story is one of the more touching. I am sitting in my parked car checking Facebook. You keep it up. Keep playing that card.
    My husband died of cancer and we had care…but for the grace of God. I would have been left with nothing but debt at the age of 58 and unemployed.
    It is harder than ever for people to be “responsible” to take care of themselves. The GOP get insurance or have the money to buy their own. They simply cannot understand or chose to ignore the FACTS.
    I do not think that woman is crazy. Your son IS standing behind you. Believe it and keep at it.
    But take care of your health, heart, and head.
    Deborah Compton

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