It was Easter on this day in 2008

My sons, Danny and Mike, on Easter 1978.

Eleven years ago today it was Easter. Flowers were blooming, the air was warming, and my house was full of people here to say goodbye to my son.

Shannon and the kids celebrated with an Easter egg hunt in my back yard, and Mike watched some of it from the Mike-around on the deck.

I was trying not to think about death in this season of rebirth, but it lurked around every corner of my existence.

My house was abuzz with activity because Mike was dying.

People were visiting, not because of the holiday, but because of Mike’s impending death.

The food on the kitchen table and in the refrigerator was here because people brought it so I wouldn’t have to worry about cooking because Mike was dying.

I was taking more time than I should off work because Mike was dying. Soon I would be out of vacation days and would have to take unpaid leave.

I would find out a couple of days later that the publisher of the paper where I worked had overruled the editor who was charging me with vacation days after he discovered my colleagues had gotten together and donated 33 vacation days to me and my husband. One by one, they had gone into Human Resources and offered between one and three of their vacation days.

The publisher stood in the middle of the newsroom and announced that everyone would have their vacation days returned and my husband and I would be able to take whatever time off we needed and still be paid.

I’m still grateful for that, by the way.

There are so many things we take for granted, but the support of friends can’t be overvalued in times like this.

People from work and people from church visited. The contingent from Cary left late in the afternoon, leaving the house a good deal quieter. Mike seemed to appreciate it.

I remember the constant aching in my heart. I remember holding back tears every time I saw him, now weighing less than 100 pounds, unable to get up without help, unable to walk without the walker, unable to eat anything more than a little nibble.

But as soon as he opened his mouth and spoke, it was the same Mike. He was still irreverent and still funny. But my time with him was so damn limited now. I wanted to squeeze in every second I could with him. I even began to resent the naps he needed to take several times a day.

I need people to know that the pain I felt 11 years ago is still fresh, still unbearable after all this time because he should still be with us.

I need people to know that there are a half million others whose families feel this same pain because that’s about how many people who have died from lack of access to health care since my son died.

If this is OK with you, stop calling yourself “pro-life” or “Christian.” You are neither.

Jesus told us to heal the sick. He never charged a co-pay or a deductible. He never asked whether the sick person was working. He never asked to see an insurance card.

We are the only industrialized nation in the world that hasn’t found a way to do this. There are no excuses. I reject all of them because every other nation has access to care for ALL people.

I will not stop pushing for this. I will not go away. I will not give it a rest.

I will fight for access to care for every human being, because I DO follow the teachings of Christ, and because I wouldn’t wish this on anyone — not even on all the presidential candidates who insist this can wait if we’ll all just be patient. If you are one of these candidates, please know that you will not get my vote under any circumstances.

On this day 11 years ago, it was Easter, a day of rebirth. We would have just one week and two days left with him.

‘Profit before people’ is fascism, and fascism killed my son

Me and Mike on his wedding day.

Eleven years ago today, I brought my son home to die.

I can’t describe to you how that feels. Unless you have lived it, you can’t even begin to know.

It was the end of hope, if you can imagine that.

Early that morning, my son and I sat in his living room. I had a cup of coffee, he had finished his. He looked so thin, so frail, but I still hoped we might have a few months, a road trip to the Northeast, just a little time.

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

He had fought like hell for three years — the first year of that fight devoted to having someone who could help him take notice of his plight. In Savannah, at Memorial Health System, he had been ignored — at one time, spending 11 days in a hospital room not being seen by a single doctor because they had written him off as not profitable enough to deserve to live. They even neglected to treat a life-threatening infection that developed in his surgical wound.

We had gotten him a consultation with Dr. Herb Hurwitz at Duke University Medical Center, and Hurwitz had adopted him. Hurwitz and his team fought like hell for my son, but it was too late already by the time we got to them.

Two weeks ago, Mike had been told he needed to gain two pounds. I had gone to the Duke Chapel that afternoon to beg for those two pounds. I just wanted more time. I wasn’t ready to let go of hope. In hindsight, I wasn’t ever going to be ready to let go of him.

We got to the clinic and Mike slipped off his leather coat and stepped on the scale. He had lost a pound. This was it. It was over.

I’ll never forget the look on his face when he said, “I tried!” If only I could forget that moment. If only I could erase the image.

Dr. Hurwitz’s eyes filled with tears as he said, “You’re a good person, Mike. You don’t deserve what’s happening to you.”

I have since found that most Republicans are cautious with their sympathy. They want to know whether he was working when he got sick, as though unemployment deserves the death penalty.

When I call them out on it, they insist, “some people just want a handout.”

First of all, nobody “just wants a handout.” People want the dignity of access to lifesaving care.

Secondly, health care is not ever a handout. It is a basic human right, and we have a word for people who would deny others a basic human right that they, themselves, have. We call them fascists.

If you think my son deserved to die because insurance companies wouldn’t cover him and doctors at Memorial Health System in Savannah, Ga., wouldn’t care for him, you are a fascist in my book. “Profit before people” is about the shortest accurate definition of fascism there is.

I think that moment when we realized there was nothing more we could do was when I became convinced that my heart would stop when his did. I couldn’t picture life without him, so I would go with him.

As we were headed back to the parking garage, Mike turned around in his wheelchair and said, “What do you think I have, Mom? Two weeks?”

“God, I hope it’s more than that,” I said.

It wasn’t. In two weeks to the day, he would die. His heart would stop and mine would keep beating.

If you think I sound pissed as I watch the Democratic Party try to prepare me to accept another “centrist” candidate for president, another 1960s-era Republican who doesn’t care how many people die as long as the economy is growing, you’re right. I am.

You can curse me all you want for refusing to play that game any longer. Somewhere near a half million people have died the same way my son did in these last 11 years.

I do what I do so your child won’t die the way mine did.

I have every right to withhold my vote from people who don’t care enough about these human lives to fight for them.

In fact, I expect the same commitment from everyone who knows we need a universal health care system NOW. Not in another 11 years, but within two.

Believe me, I’d rather be with my son than be battling this kind of ignorance here now.

DO NOT try to convince me to vote for another right-winger for president. The creature currently squatting in the White House is not my fault. I voted for your “centrist” in 2016. You didn’t learn from that defeat. You will not get my vote again unless you put up an acceptable candidate.

Eleven years ago today, I learned what it was to lose all hope. We would have exactly two weeks left with my son.

 

 

Don’t blame me if you put up a candidate I can’t vote for

Until Beto says he will support Medicare for All, he will not get my support. Neither will any other candidate. Not in the primary and not in the general election.

Beto O’Rourke hasn’t said he supports Medicare for All.

Beto O’Rourke won’t get my vote unless he does.

John Hickenlooper said he doesn’t think health care for everyone should be a “litmus test for Democrats.”

John Hickenlooper won’t get my vote.

Jay Inslee has said, “Right now we need to embrace the things that we can have to move toward universal health coverage.”

Jay Inslee won’t get my vote.

Others have said we should “move toward” a single-payer system.

Even those who are willing to improve and expand Medicare want us to take our time getting there.

Unless “move toward” means everyone is covered within two years of your inauguration, you won’t get my vote.

I’m serious about this, and I will not move one bit on it.

A public option is no longer enough. People are dying every damn day while we dither on how we might move forward, while at the same time never moving forward.

It has been nine years since the Affordable Care Act passed. It did get 15 million more people insurance, but those numbers are falling since the current administration decided to sabotage the law, and even having insurance insures little more than the insurance companies’ profit.

How does a person making $10 an hour afford employer-sponsored insurance (which makes the person ineligible to buy affordable insurance through the Marketplace) that costs $700 a month and has a $6,000 deductible?

As one friend said to me last year, “I’d have to take out a $6,000 loan to get sick and that’s before all the co-pays.”

So, we still have about 33 million uninsured in the US, and millions more whose insurance gives them little or no access to health care. If it’s not deductibles and co-pays, it’s in- or out-of network, it’s denial outright denial of claims that the insurance company should pay for, but will deny if it can get away with it. It’s denial of a lifesaving drug because the policy’s formulary is so limited.

Insurance companies are still in charge and we must put an end to that.

And nearly all the Democrats are saying they won’t support an immediate move to Medicare for all. They don’t want to hurt Big Insurance by making it do what it’s supposed to, and they don’t want to get rid of the robber barons who run the for-profit insurance companies. Republicans think everything is fine, so we’re not even going to talk about them here.

Eleven years ago today, I was heading to Cary, where my son lived, so I could take him to his Tuesday chemo appointment. I still had hope we might have a few months left with him, that we might take a road trip during the summer so he could see friends and family in the Northeast one last time.

Mike had been sentenced to death, not because he had committed any crime, but because a birth defect was a pre-existing condition and the poor, struggling insurance companies likely wouldn’t make a profit off of him. So he was condemned to a slow, torturous death.

Doctors had been allowed to turn him away because he couldn’t pay.  The emergency room had met its legal obligation by giving him a laxative instead of looking for the malignant tumor that was blocking his colon.

Medicaid had been allowed to deny him access to care unless he separated from his beloved wife, and the Social Security Administration was allowed to take 36 months to approve his claim. The letter came 11 years ago March 10 — 36 months after he applied following a Stage 3 cancer diagnosis. His first check would come nine days after he died.

But Medicaid — once it had broken up his marriage — paid the drug companies, so they got their profit. The total cost of his chemo alone was about $600,000. The ostomy supply people got paid thousands of dollars over that 36 months, while the only help my son was offered was $10 a month in food stamps. He turned it down.

This is what life looks like for somebody who needs access to health care. This is what death looks like for someone who is denied that access.

People who own homes and have savings are reduced to the poverty in which my son was forced to exist. Most cancer patients go through their entire life’s savings in two years, leaving their families destitute, whether or not they survive.

Medical expenses account for two-thirds of bankruptcies in this nation. You can not be prepared for this unless you’re immensely wealthy, and every one of these Democratic candidates can put together millions of dollars, so they have no idea what it’s like for the rest of us.

I have taken a lot of heat for saying that I will not vote for a person who won’t support an immediate move to single-payer. But scream at me all you like, I will not support anyone who won’t work on fixing this first thing.

I have been patient. But close to a half million people have died since my son did. Jesus, people, how many more will it take before you get it?

Does it have to be your child before you see the scale of this disaster?

No one — I repeat, no one — will get my vote without a promise to make this (and climate change and living wages) a top priority. I can not be mollified with any promises except this one: “I will move on Day 1 to change this health care system to one that will care for everyone. I will not abandon this until we have a system in place.”

If you won’t make that promise, you can’t have my vote. Not in the primaries and not in the general election.

To the DNC: If you force another 1960s-era Republican on me, you will lose my vote. I will not be a good girl and get in line again. It’s up to you to make sure we get a candidate who will work on what 70 percent of voters overall — and 52 percent of Republican voters — want.

I know I’m not alone in this, and if enough of us come out and say we will blame the DNC if we get another “centrist” who won’t act on health care, living wages, voting rights, climate change and the war economy, perhaps the DNC will quit trying to block the candidates who will give us what we want.

If it means another four years of the current administration, it’s your fault, not mine. I am done being nice.

Eleven years ago today, I was packing the car to head out to my son’s. I had no idea that we had just 17 days left with him. I couldn’t imagine life without him, so I began to believe my heart would stop when his did. Part of me still wishes it had.

I wouldn’t wish the pain my family and I have endured on anyone, and for that reason, I will oppose any candidate who won’t promise to make a real solution to this mess a top priority. And a real solution means results within two years. I think that’s perfectly reasonable.

I can’t get my son back, but I can work so no more mothers lose their children the way I lost mine.

If you think you can change my mind, think again. I will not be placated by anything short of universal, affordable access to quality care. The rest of the world has it, and we will too.

 

 

A lesson in what Jesus would not do

El Greco, “The Miracle of Christ Healing the Blind.”

Walking around the Legislature Building the other day, talking to Democrats and Republicans about the necessity of expanding access to health care, it happened again: Every Republican asked me whether my son was working when he got sick.

I gave them my usual answer: Yes, he was working and he was a full-time student with a 3.75 GPA. Now let me ask you a question. When did unemployment become punishable by death?

Every one of them replied, “Well, you know, some people just want a handout.”

“No,” I replied, “nobody wants a handout. I’ve worked with people in poverty. I’ve been in poverty. Nobody wants a handout.

“And another thing. Health care is not a handout. Never. Health care is a basic human right.

“And do you know what we call people who deny basic human rights to others?

“We call them fascists.”

I’m pretty sure every one of these Republicans calls themselves a Christian, so I’d like to offer a little pop quiz to them.

Question 1: Jesus is walking along and a blind man approaches him, begging for help. Does Jesus:

A) Tell the man he needs to get a job with health insurance.

B) Ask to see the man’s health insurance card and then say, “Oh, this isn’t covered under your plan. We can squeeze you in this afternoon, but you’ll have to bring $2300 cash. We don’t take checks.”

C) Tell the blind man to go to the Emergency Room so someone can take a look at him there.

D) Heal the blind man, no questions asked.

Question 2: Jesus is walking along the road and he feels as though power has drained from him. He turns to see an old woman, stooped low, who has had vaginal bleeding for years. She has touched the hem of his robe, hoping to be healed. Does Jesus:

A) Recoil in horror at the unclean woman and demand she be removed from his presence.

B) Tell her she can get free feminine hygiene supplies at the County Health Department.

C) Tell her she’s guilty of Eve’s Original Sin and what’s happened to her is exactly what she deserves.

D) Smile and say, “Your faith has healed you,” as she stands straight, no longer bleeding and thanks him profusely.

Question 3: Jesus is walking along and a man comes to him in a panic. The man’s son is possessed by a demon and the father is afraid it will kill the child. Does Jesus:

A) Tell the father there’s no such thing as demons and he should take the child to see a good neurologist.

B) Tell the father this looks like a mental illness and that’s not covered under his employer’s plan, but the next time the child has a “fit,” the parents should call the police, who will come and handcuff the boy, throw him in the back of a squad car and take him to the ER, where he’ll be handcuffed to a gurney until a psychiatric bed becomes available. Could be a couple of days.

C) Tell the father the demon is punishment for his own sins, so he’d better figure out what he did and pray really hard for forgiveness, and if he prays hard enough, the child will be healed. If the child remains possessed, it’s because the parents aren’t praying hard enough. (The irony here is that the disciples asked why they couldn’t heal the sick and Jesus told them their faith wasn’t strong enough — just in case you thought I didn’t know my Bible stuff.)

D) Heal the child, no co-pays or deductibles charged, no questions asked.

I’m not going to tell you the answers. You can figure them out for yourself. I think if you’re the Christian you say you are, if you read the words of the man you claim to follow and take them seriously, you’ll get the answers right.

I think if you truly believe we can and should allow people to die because those of us with the privilege of access to health care think they’re somehow undeserving of what we have, then you’ll fail this quiz.

What’s worse, though, is that you fail as a moral human being, no matter what faith you claim.

The sacred walks among us in many unexpected forms

Onstage at the annual Moral March on Raleigh, from the left, NC NAACP President Rev. Dr. T. Anthony Spearman; NC NAACP Health Care Committee Chair Rev. Dr. Rodney Sadler; Debbie Bracer, whose son died from lack of access to health care, and me. 
Yesterday, I stood onstage at the 13th Annual Moral March on Raleigh, in solidarity with a woman whose son died from lack of access to health care.
Debbie is a couple years younger than I am. She still has two sons, but she weeps every time she utters the name of the one she doesn’t have anymore. Still. Two years out.
He was denied the drug he needed to survive because he wasn’t rich enough to afford it, and he died. She spoke about the pain of not being able to touch him, or hear his voice, as tears dripped onto her jacket.
She used a cane to stand, and I stood on her other side, my arm around her shoulders. Others stood with us to emphasize that we stand together for access to health care for everyone.
Before she spoke, she looked out at the crowd. Previously, she had told me she didn’t know if she could get through her speech, so I told her I’d be there to finish it for her if she couldn’t get through it.
But as she looked out at the crowd, she stood a little straighter. She handed the photo of her son to me and whispered, “I can do this.”
And then she did.
He looked just like his mama. They had the same smile, the same eyes.
Debbie feels as though the world doesn’t just hate her for being black, but also because she is a lesbian. She left a bad marriage after her third son was born and realized she had married for all the wrong reasons.
I wondered how anyone could hate a loving mother, a woman who fought so hard for her child’s life, when she told me, “I have two strikes against me in the eyes of powerful people.”
As I left the stage with Debbie, I recalled a middle school Sunday school class from a dozen or so years ago.
The lesson was “The Unexpected Jesus,” and the kids and I discussed what Jesus would look like if he came back today. We discussed the parameters first: It would have to be someone reviled by many Christians. It would have to be someone powerless in today’s power structure.
We talked about the Unexpected Jesus, the Jesus who ate with prostitutes and tax collectors, who spurned and challenged the powerful. We talked about the carpenter’s son, who recruited a few fishermen and changed the world.
So, we agreed that this Unexpected Jesus could come in many forms, not just that of a Jewish carpenter’s son from a small village in Galilee.
Suddenly someone said, “I think he’d come back as a big black lesbian.”
The room was quiet for a moment, and then we all blurted out something to the effect of, “Perfect!”
Now every time I see a black lesbian suffering because of her skin color and/or sexual orientation, I see Jesus.
I saw Jesus in Debbie yesterday, in the kindness and love of a woman who has lost something so precious it can’t be verbalized. All she can do us weep at the mention of her precious child’s name. I saw a woman whose human value is called into question because of her skin color and sexual orientation instead of a woman crushed by the grief of losing her child to injustice.
But I don’t see Jesus only in the life of my new friend. Jesus is so much more than that.
I see Jesus in the Latino child in a cage.
I see Jesus in the veteran who can’t get treatment for PTSD.
I see Jesus in the girl who has been kidnapped into sexual slavery.
I see Jesus in the faithful Muslim.
I see Jesus in the bereaved mother whose son died from lack of access to health care.
I see him in the low-wage worker whose rent and electric bill are coming due the same day and whose children are hungry and ill-clothed, and in the trans man who’s being harassed in the rest room, and in the homeless person who’s being chased from the sheltered doorway during a rainstorm.
I do not see him in the people calling for a wall at the Southern border, or in the people refusing to vote to increase the minimum wage to a living wage. I don’t see him in the people who make excuses for racism or misogyny. I don’t see him in the people who deny others the health care to which they themselves have full access, or in the people who accuse poor people of being lazy.
If you see Jesus in the powerful and not in the powerless, perhaps you need to re-read the red print in the Gospels. Perhaps you also need to go back and read the laws in the Old Testament — not the ones that talk about sex, but the ones that talk about treatment of the poor and downtrodden.
I’m tired of white privilege. I’m tired of the vitriol against people who are different, whoever or whatever they are.
I’m tired of the war on the poor.
Remember, Jesus was a poor man, likely a dark-skinned man. He spoke out against wealth and the privilege it brings. If you don’t see the sacred in Debbie, you need to re-examine your faith.

You can’t erase their lives

Me, singing as I was arrested for the fifth time for trying to talk to lawmakers about fixing our broken health care system.

I got arrested again.

For the fifth time, I was arrested for trying to speak to lawmakers about the mess that is our health care system.

They don’t care.

They don’t care that tens of thousands of people die prematurely every year, and that millions can’t afford the care they need, even with insurance.

They practice the religion of I-got-mine-get-your-own, as they and their families all have the best care this country has to offer.

I was a speaker at the Poor People’s Campaign rally in Washington on Monday, and we had a coffin in front of the stage to illustrate the fact that innocent people are dying every day from lack of access to health care and from industrial pollution.

And as these things happen, those in power continue to roll back environmental regulations and chip away at the Affordable Care Act, which has given millions of Americans access to the care they need.

As I was about to step up to the microphone, the police told organizers that they had to remove the coffin.

Several times, I have been denied entry to legislators’ offices and public events because I won’t surrender the photo I carry of my late son. That’s why I have the T-shirt with his photo on it. So far, no one has tried to confiscate that. But the forced removal of the casket became the same thing as the attempted confiscation of my son’s photo.

Something in me snapped.

It’s as though they want to erase the lives they have sacrificed on the altar of greed.

I stepped up to the mic.

“You can force us to remove this symbol, but that doesn’t change the fact that my son lived!” I said. “He DID exist. He was here. He was loved. And he was murdered by a broken system.”

The crowd began to chant, “SHAME! SHAME! SHAME!” But the casket was removed anyway.

The problem is, these people who have the power to save tens of thousands of lives a year refuse to make any move to do so. In fact, the “Justice” Department has announced it no longer will defend the Affordable Care Act in court when states challenge it.

These powerful people call themselves “pro-life,” and “Christian,” as they try to take away women’s rights to control their own bodies, and I’m not just talking about abortion. I’m talking about attacks on contraception and on women’s health clinics, which are the only access to health care many poor women have.

As it says on the T-shirt with my son’s photo on it, “When you take away access to care, real people die.”

And closing women’s clinics is taking away access to care.

When you care more about whether a woman is having “moral” sex than her very life, you are not pro-life.

When you care more about whether a business has to serve a gay couple than you do about real people’s lives, you are not pro-life.

When you think people should have to work three full-time jobs at minimum wage just to make a living wage, you are not pro-life.

When you attack education, you are not pro-life.

When you attack Meals on Wheels, food stamps and free and reduced-price school lunches, you are not pro-life.

When you put people who have committed nonviolent crimes into for-profit prisons, you are not pro-life.

When you think we’re OK spending more than half of all our nation’s discretionary dollars on the war economy, you are not pro-life.

When you tear children from their parents’ arms and place them in cages in an old Walmart, you are not pro-life.

When you hate someone because of the color of their skin or the name of the god they worship, you are not pro-life.

When you rob people of the right to vote to determine the destiny of their own nation, you are not pro-life.

When you’re OK with children’s lives being snuffed out so that you can continue to have unfettered access to high-powered, military-grade guns, you are not pro-life.

When you think it’s perfectly OK to poison the water and the land of poor people, you are not pro-life.

These murderers seem just a little uncomfortable being reminded of the lives they have been responsible for ending.

Bad public policy is lethal, and they don’t want to be reminded of that. They only want to think of themselves and how much more money and power they can amass.

But people are beginning to rise up. Thousands have been arrested during nonviolent protests in the last month, and more are coming.

We are coming for the corrupt people in power.

We are coming to end the greed that fuels our government now.

We are coming to save the lives being lost to that greed.

We are the ones who are pro-life.

We are the ones who are moral.

We are the ones you should fear because we will win, maybe not in November, but eventually.

Your days are numbered.

We. Will. Win.

You can take away my son’s coffin, you can try to confiscate his photo, you can call me names, you can arrest me.

But you will not erase my beloved son’s life. I will not allow that.

 

 

 

 

Nobody “just wants a handout.” Nobody.

I will continue to tell my son’s story because no one — no one — should die the way he did. This was almost a year ago, hours after Rev. Barber and I were arrested for refusing to leave the General Assembly Building until we had been allowed to exercise our Constitutional right in North Carolina to speak to lawmakers about expanding Medicaid. 

Ten years ago today was my first day of life without my precious son. It has been difficult every moment of every day. I live on the verge of tears almost constantly.
I have been and will continue to be very public with my grief because Mike’s is far from the only story of death by denial of health care. We got the Affordable Care Act passed, but opponents are still trying to get rid of it, to go back to the days of killing people like my son because they can’t turn him into a profit-maker. He was denied care until his cancer had spread. That’s when he could turn a profit for Big Pharma. Taxpayers couldn’t spend $1,000 a year to prevent his cancer, but when Big Pharma could make a profit off him, taxpayers were forced to pay more than a half million dollars for his chemo.
Go ahead, call me a conspiracy theorist, but you won’t change my mind.
Here’s what you need to know if your heart aches for me and the hundreds of thousands of Americans whose loved ones have died and continue to die the same way he did and who endure the same pain I do:
Profit-mongers are still trying to kill the poor, the elderly and people with disabilities.
The Republicans’ “health care” bill takes money from Medicaid, the federal insurance program for poor people and people with disabilities. If you think Medicaid is for people who “just want a handout,” think again. Medicaid pays the bills for people who live in nursing homes and for people who live with disabilities. For those who have it, Medicaid is a lifeline.
But the income limits are so low that even disability can put a person over the top and leave them without access to health care for two years, until Medicare kicks in. That’s right, Medicare doesn’t kick in for 24 months after a person begins to receive disability payments. I’ve known people who have fallen into that loophole, and some of them die from lack of care.
Remember, my son, who had no job and was too sick to work, still had to leave his wife to get Medicaid, and his disability took 37 months to be approved. His first check came nine days after he died.
He never wanted a goddamn handout, OK? He wanted to work and pay his way. Until he got sick, he thought the government had no business getting into health care. He changed his mind when he saw what really happens to people, as it happened to him.
I have a friend in Rhode Island, which has expanded Medicaid, thank God, who has a rare disease and can’t work. Without Medicaid, he will die. He is a passionate, funny, smart, kind and caring person. He doesn’t want a handout, he just wants to survive.
My stepfather and my mother both needed to be in a nursing home at the end of their lives. They had both worked and retired in their 70s. Should they have been sent home to die?
If that’s what you think, then go ahead and set your elders and anyone with a disability out onto an ice floe now, because you are condemning them to death.
My son has been gone a decade, and it hurts today every bit as much as it did 10 years ago.
I fought for the passage of the Affordable Care Act because it would lower the death toll, and it has, by more than 20,000 human beings every year.
People who need health care don’t deserve to be turned away. No human being should suffer the way my son did. No human being deserves to die from the greed of Big Pharma, Big Insurance or any other greed-driven entity.
Health care is not a “handout,” it is a basic human right. If you don’t agree with that you are wrong, and if you refuse to listen, you are willfully ignorant — and still woefully wrong.
Let me repeat what I’ve said a thousand times or more since my son died from medical neglect: Nobody wants a handout. Nobody. In all the years as a reporter working on social justice issues, I never met a single person who just wanted a handout. No once. In the decade since that I have worked as an advocate, I haven’t met anyone who just wants a handout. If you think you know someone who just wants a handout, get to know them better because I assure you, they don’t.
I can imagine that some people get so weary from fighting that it might seem as though they’re just looking for a handout, and I have seen that, but no one starts out that way.
If you want to be able to consider yourself a moral person and you think it’s OK to let people die, you need to change your ways.
I start out the second decade without my precious son the same way I started out the first, immobilized by my grief and determined to stop the carnage.
I will fight these purveyors of misery and death going forward as passionately as I have fought for the last 10 years. I will not stop, I will not step back. That’s my promise to my son and I will keep it to my dying breath.

Two more days

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.

Ten years ago today, we had a dozen or so people in the house. Along about mid-afternoon, Mike was napping and I was just getting out of the hot tub and drying off when the doorbell rang. I opened the front door to find a very angry woman standing on the steps.
“What the hell is going on with all these cars on my street!” she demanded. “What makes you think you can clog up my street with all these cars? I have to get in and out of here, you know and this is a menace!”
I listened for a moment as she ranted, a couple of my friends standing behind me in utter disbelief that someone could be so nasty without asking what was going on before launching into attack mode over cars on “her” street.
“Excuse me,” I said finally. “These people are here to say goodbye to my son. He’ll be dead in a few days and you can have your precious road back, although I’ve been led to understand you don’t own the road, we all do.”
Her jaw dropped.
“Oh, I’m so sorry.”
“You should be.” I started to close the door.
“Wait! Is there anything I can do?”
“Yes. You can drive carefully. None of us needs to add a wrecked car to our grief.”
A half hour later, Mike woke up and I told him about it. He burst out into a belly laugh. He always loved it when rude people got put in their place.
That would be his final belly laugh.
That evening, all our company would leave and it would be just me and Rob and Mike. James and Janet went back to Raleigh to take care of things there and would come back Wednesday.
Janet would lose her job because her boss said she couldn’t have any more time off. James’s boss would allow him the time he needed to say goodbye to his best friend.
Rob’s and my boss, Randy Hammer, had told us to take whatever time we needed.
Randy had told me a few days earlier he was praying for a miracle, and I told him that was nice. I did appreciate the prayers, I said, but there wasn’t going to be a miracle and I would appreciate it even more if he would pray for strength for those of us who were left behind.
He was a little shocked that I would give up, but I had to be realistic. I didn’t want to have false hope. In my mind, praying for a miracle just means you’re not good enough to get one when it doesn’t happen.
The people in my childhood church always blamed the victim for not praying hard enough or not believing enough when no miracle happened. I won’t fall into that trap. If anyone deserved to live, it was Mike. He was kind and generous, smart and funny. But he would die because he didn’t have insurance and he didn’t have a doctor who gave a rat’s ass about him until it was too late to save his life. He would die, just like 45,000 other Americans that year because our health care system is broken and the powerful people who have all they access they need are too greedy and corrupt to fix it.
Even now, 10 years later, Republicans’ first question on hearing his story is, “Was he working?” As though we have criminalized poverty to the extent that we believe all poor people are lazy, as though unemployment should be punishable by death. And when I say that, the response is always, “Well, some people just want a handout.”
No. Nobody wants a handout. I’ve worked with people in poverty in one way or another for more than 30 years and I’ve never met anyone who just wants a handout. Not one soul. What people want is to live in dignity, working and being paid enough to meet basic expenses in exchange for a week’s work. People want access to health care, a decent education, safe housing, healthy food, clean water — and they should all have these basic things.
For the final three years of my son’s life, he lived in abject poverty because he had to leave his wife to be eligible for Medicaid and it took 37 months to approve the disability payments he had earned over 18 years of working, and his first check didn’t come until nine days after he died.
On this beautiful spring day 10 years ago, we had just two more days with him; 48 hours to soak up enough of his spirit to last a lifetime.

The tarnished tiara

A little like the tarnished halo I envision my son wearing.

Today is my 65th birthday. It would have been my son’s 43rd.

This is the 10th birthday I have celebrated without him. I thought about that as I lay in bed at 8:30 this morning, the time he entered the world 43 years ago.

He enriched not just my life, but the lives of pretty much everyone who knew him. He was smart, wickedly funny and kind. He was also a self-proclaimed jackass, as were his two best friends, James and Christian. The three of them together created a shitstorm of hilarity — unless, of course, jackass was not your thing.

Michael spoke his first word at 7 months. It wasn’t Mama; it was mouse. See, he had this little squeaky mouse and he dropped it. I picked it up and gave it back to him and he said, “Mouse.” Clear as day.

I thought he couldn’t actually be saying mouse because he was seven months old, but he dropped it again and again, and each time I handed it back, he said it again.

He pretty much didn’t stop talking after that. He drove his teachers nuts. He distracted everyone else in the classroom. But, in his defense, he was bored. The teachers who allowed him to read books years ahead of the abilities of other kids his age were the ones who got a little peace.

Mike, age 6.

When he was in the fourth grade, a teacher took away the collected works of Edgar Allen Poe because she thought it would give him nightmares. I had to call her and try to explain his tastes in literature to get the book back.

I got calls at least once a week about how he was being disruptive in class, and each time, the teacher had insisted he just do the work his classmates were doing. Well, if he finished the assignment in five minutes and the rest of the class took 30 minutes, that’s 25 minutes for him to be bored and trying to find ways to amuse himself.

As I said, the teachers who found him something to do were the ones who got a little peace and quiet.

When he was in fifth grade, they forced me to put him on Ritalin. He hated it, I was against it, but the school district threatened to call child protective services and report me for being neglectful. I was afraid they’d try to take him from me, so I allowed it.

A couple of months later, Michael came to me and said he hated the medication, that it make him feel like “not-me.” So we made a deal: He would contain himself. He would be conscious of his impulses and not let the teacher know he hadn’t taken his medication, and we would see how long he could fool them. It was three months, and in that time, an attorney friend of mine said she would fight the district for me if they tried to force the medication on us again.

When the teacher called and said, “Someone forgot his meds this morning,” I was able to tell her it had been three months since he had taken a pill and we would not allow them to force us into medicating him again.

The solution, of course, was to allow him to read in class when others were finishing their work, and he read science fiction novels.

But in his adolescence, he turned to drugs and alcohol. He said years later that the Ritalin had been the gateway drug, the thing that turned him onto mind-altering substances. I don’t know if that’s true, but he believed it.

He sobered up when he was 22, and he spent the remainder of his life helping other people get and stay sober. He saved lives, but there was no one with the ability to do it who would move to save his life when he couldn’t buy insurance at any price.

His doctor wrote in his medical record, “Patient needs a colonoscopy but can’t afford it.”

Later, when the symptoms started, he went to the emergency room three times. But the ER only has to stabilize you, and he left with the wrong diagnosis and the wrong medications three times. A doctor finally agreed to do a colonoscopy, but he didn’t tell Mike that his colon was entirely blocked. He just sent him home and wrote in the record, “couldn’t complete procedure. Next time use peds scope.”

I couldn’t get an apology for that from Memorial Health in Savannah, where the doctor is on staff. An apology was “too much to ask,” even when I offered to sign a written promise not to sue.

My son was a remarkable human being. Through three years of pain and suffering, he never lost his sense of humor — and he maintained his sobriety.

Mike had an incredibly foul mouth, and my penchant for dropping the F-bomb likely is just him channeling through me. (That’s my excuse and I’m sticking by it.)

I understand his wise words are still quoted in the rooms in Savannah and in the Triad here in North Carolina. He had the wisdom of a very old soul.

I was told earlier this year that he’s very, very proud of me. That came from a woman who introduced herself to me with the words, “You’re going to think I’m crazy, but I have a message from your son.” I thanked her, and as I started to walk away, she added, “One more thing. Did you know he stands behind you when you speak, and he’s smiling?”

Then I knew she wasn’t crazy because I feel his presence sometimes. And I know he’s smiling because he loved nothing more than being the center of attention.

Before he died, he asked what I planned to do with the Dead Kid Card (he had spent three years playing the Cancer Card). I told him I planned to work for universal access to care because, as my T-shirt says, “Everyone deserves health care. Everyone.”

I have been arrested four times — so far — in this work. I don’t go into legislative office buildings to get arrested; I go to plead for the lives of every human being who can’t get access to care. I go, hoping against hope, that I can change one mind, two minds … enough minds to get a health care system that doesn’t reject human beings because they can’t pay.

This work is my life now. I stand for the people Jesus called “the least of these.” You can arrest me, make me do community service (which I do anyway), throw me in jail … but unless you kill me the way this system took the life of my precious son, I will keep on doing what I do with every ounce of strength, every breath and every beat of the heart left to me.

Happy birthday to me, and to Mike. The tarnished tiara is in memory of you, my sweet boy, as is all the work I do.

 

While you were distracted, 9 million children lost access to health care

Nearly 9 million children in low-income families were enrolled in CHIP — until the Republicans, who control Congress, let it expire.

It’s not enough that I lost a son to lack of access to health care.

It’s not enough that my only surviving child has no insurance.

Now the Republicans in Congress have stripped my grandson and my great-granddaughter of their access to care.

At midnight on Sept. 30, Congress — which is controlled by Republicans —  allowed the Children’s Health Insurance Program, or CHIP, to expire.

In addition, funding for community health centers expired at the same time.

So, Republicans, tell me again how you’re pro-life because you’re against a woman’s right to not bring a child into a world where no one cares if it dies in infancy or childhood, simply because you believe their parents are your moral inferiors because they’re poor and “just want a handout.”

Oh, and you’re also against paying people a living wage in exchange for a week’s work, making it nearly impossible for anyone to escape poverty.

You support keeping people in poverty and then criticizing them for being poor. Then you yank their children’s health care.

There is no defense for this. None.

This is terrorism. It is murder.

I have no problem offering a handout to children like my grandson and my great-granddaughter. I can’t understand why Republicans would have a problem with it.

I have no problem with the government funding clinics that care for people like my son, who works two part-time jobs as he enters his fourth year drug-free.

No one in my family has ever asked for a handout. We simply want what is available to people in every other industrialized nation on earth — health care.

While we’re on the subject of health care, let’s talk about the “failure” of the Affordable Care Act, which, by the way, would have saved my son’s life.

A record number of Americans have health insurance now, and while some of these policies are pretty crappy, they still are better than nothing.

Before the ACA, some 45,000 people died every single year from lack of access to care — that’s one every 12 minutes. Today, it’s between 15,000 and 20,000, the majority of those being in states that have refused to expand Medicaid to cover the working poor — the very people for whom they say they have sympathy.

My granddaughter was in high school when her daughter was born. She finished high school and now works and is in nursing school. She’s exhausted most of the time, but she’s determined to make it.

Tell me again how she and her baby deserve to die. I’d just love to hear your rationalization.

My grandson is in high school. He tells me he wants to be a teacher. He loves photography and he works at a restaurant so he can afford new photography equipment and to put gas in the car so he can go to the nature preserve and shoot birds and alligators. When he’s not driving, he’ll try to convince whoever is to slam on the brakes when he sees a good photo. His CHIP would have expired in March anyway, so no big deal if he gets sick a few months early, right?

And my great-granddaughter, who’s 4 1/2, well, she doesn’t even have a job. Perhaps she should learn to pull her own weight, right? I mean, where does that lazy little thing get off wanting to play when she could be out there helping to build roads or working at Home Depot?

No, wait — Home Depot doesn’t hire many full-time people anymore because it would have to offer them health insurance. Can’t have people getting health insurance when it might cut into profits, now, can we?

We’re flying flags at half-staff today because a domestic terrorist killed 20 people and injured 400. And while that’s a tragedy, I think 9 million children without access to care and millions more people losing access because their local clinic closed, is far, far worse.

When we can allow children to die from lack of access to care, we surely have lost our collective soul.

We are a despicable nation and we deserve to fall.

 

 

 

 

 

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