Stop denying your privilege. It’s truly offensive.

Last night, somebody shocked me by telling me I was talking “nonsense” when I insisted out current health care “system” is broken, and that we have to move to single-payer.

“We need to preserve our system,” she said, and proceeded to try and shame me into supporting Joe Biden or another “moderate” who’s beholden to the profit-mongers currently in charge.

I was appalled that anyone knowing how I lost my son to this mess would say that to me.

I told her she was talking privilege.

She has the privilege of being covered by an insurance plan she can afford, co-pays, deductibles and all.

She has the privilege of not needing immediate help that’s just unavailable because she can’t afford it.

She has the privilege of not having watched someone she loves more than life itself draw his last breath because nobody would help him.

She has the privilege of being able to wait for politicians get off their asses and do something about the 35 million Americans who have no insurance, and the millions more who have insurance with a deductible so high they can’t afford to use it.

She claimed she has no such thing as privilege, that she just wants people to be able to get health care.

But she can’t see that tens of millions of Americans are going without while she calls me stupid for wanting them to get immediate access.

She probably thinks we can wait a few years for the minimum wage to hit $15, too. But if you’re making $7.25 an hour, you can’t wait for that raise. You need that money now. If you think otherwise, your privilege is showing.

If you hold the people at our borders in contempt because they walked a thousand miles with their children to escape drug gangs — gangs that are the direct result of US drug policy — your privilege is showing.

If you think our policy of incarcerating people — non-citizens or citizens — in private, for-profit prisons, not feeding them enough (I know about conditions in private prisons because my brother is in one) and then “contracting” their labor out to the highest bidder, your privilege is showing.

If you think the people in Flint and other cities with lethal contaminants in their water can wait for it to be fixed, your privilege is showing.

If you think it’s OK to keep somebody in jail for months as they await trial for a nonviolent misdemeanor like falling asleep on a park bench, causing them to lose their jobs, housing and even their kids, just because they can’t come up with $250 cash bond, your privilege is showing.

If these things and other atrocities perpetrated by the fascists in Washington are OK, it’s because you have a warm bed, clean water, access to health care, reliable transportation, enough food — in other words, privilege.

If you think poor people are just lazy and only want a handout, your privilege is showing big time.

And if you’re white and male and you don’t see any problem with the way things are, you’re particularly privileged.

When you have such privilege and you deny it, I find that deeply offensive. When you call me stupid because you can’t see your privilege — even when it’s pointed out to you, you are even more despicable to me.

When you have such great privilege and you deny it, you are willfully ignorant, and there are few greater sins in my book.

I know it’s hard to recognize our own privilege, but we must if we are to move toward a just society for everyone, not just for you.

No more gradualism, no more excuses

New York Times photo

A “friend” came onto my Facebook page yesterday to explain to me why we need to fix health care gradually.

The first thing I did was ask whether she thinks a century is gradual enough, since it was Theodore Roosevelt who first proposed a single-payer health care system more than 100 years ago.

But then I thought about it and removed the post — and the friend.

This is a person who knows I lost my son to this broken system. Her post was immensely disrespectful, and before I removed the post, I asked whether it would take the death of a child of hers to make her understand how misguided her post on my timeline was.

And in the 11 1/2 years since my son died, another half million Americans have died the same way. That’s right, 500,000 — 45,000 a year, year in and year out. The Affordable Care Act helped for awhile, but now 70 percent of employer-sponsored plans have a deductible of $1,000 or more — some as high as $6,000 — not to mention co-pays and out-of-network charges. Even plans on the exchange are pricey unless you have a large subsidy. The year before I went on Medicare, my premiums were $1,300 for just me and the deductible was $3,000. My co-pay to see my regular doctor was $40, and a visit to a specialist was $75. When I needed outpatient surgery for a kidney stone, I was responsible for more than $6,000 of the $13,000 bill. And this was before our local hospital was sold to a for-profit corporation.

No one has studied how many insured Americans die because they can’t afford that kind of money. Remember that a recent survey showed the majority of Americans can’t afford an unexpected $800 expense. Since most deductibles now are more than $1,000, where does that put the average family?

I’ll tell you one thing, it puts them in a place where they can’t afford health care. Sure, they’re able to get the colonoscopy or the mammogram, but if it shows any irregularity, now what? Can you afford the tests? How about the treatment?

Nearly half of cancer patients have to wipe out their entire life savings for treatment — and that’s with insurance. One in three will go bankrupt.

Once every 12 minutes another American dies from lack of access to health care. I’m betting their families would rather not have waited for reform.

If you think you need to tell me why we should wait to fix health care, do me a favor and restrain yourself. I’ve heard all your arguments and I don’t need to hear them again. It only re-opens the wound of my son’s unnecessary death again and again and again.

I understand that you don’t know what it’s like to watch your child breathe his last, and I hope you never do. But you need to understand that hearing you say we can wait for health care means you don’t give a damn about any of these deaths, even though you say “I’m sorry for your loss.”

If you come onto my timeline to tell me why we can wait, you are most assuredly not sorry for my loss, or for anyone else’s.

I think enough people have died, and you’ll never convince me it’s OK to let more people die.

I think your excuses are lame, and a lot of them are lies designed to keep the oligarchs in charge of our health care.

I think you’ve probably not lost a child to this mess, and I sincerely hope you never do.

And I still think we need to fix this now. There are no more excuses.

Republicans want a moderate; the people want change

Migrants are gathered inside the fence of a makeshift detention center in El Paso, Texas in March. (Photo by Sergio Flores for The Washington Post via Getty Images)

We’ve seen a number of writings by Republicans lately urging Democrats to run another “moderate.”

Here’s why we need to ignore them:

Moderate Republicans want to make the Democratic party their own because they can’t bring themselves vote for a fascist. That’s a good thing, but not for Democrats.

If we put up another moderate, we’ll get the same result: another loss. That’s because most Americans know we need real change and we need it now, not in another four or eight years. Young adults won’t vote for another moderate, and a lot of traditional Democrats won’t, either, so please stop telling me I’m dooming us because I refuse to pledge to “vote blue, no matter who.” That little bumper-sticker slogan was probably coined by a “moderate.”

Eighty-three percent of Americans want Medicare for all. Eighty-three percent. But none of the moderates will pursue that.

Our planet is suffering irreversible damage because of climate change. If we don’t so something drastic in the next decade, we face extinction because we can’t breathe methane, and methane levels are increasing at an alarming rate. A moderate won’t do anything radical because he or she is owned, or at least partly owned by fossil fuel interests.

Minimum wage NEEDS to be $15 or more an hour. A moderate won’t do that because his or her corporate overlords will forbid it.

We have a humanitarian crisis at our border, which is nothing more than a ramping up of existing policies put in place by a moderate. Yes, Obama was a moderate, and he deported more people than anyone before him. Obama created the camps, although they were nothing like what they have become. Still, I doubt a moderate will close them. Remember how Obama promised to close Gitmo? It’s still there.

As a result of this policy, human beings now are being rounded up and placed in conditions that we wouldn’t allow for animals. How long before we start killing some to make room for more?

We have a criminal thug in the Oval Office and the moderates in Congress do nothing to stop him.

The people offering this advice are REPUBLICANS looking out for their own interest, not ours. Where are your critical thinking skills, people? These are not “hard left” positions. These are mainstream positions, and we will not win back the Senate or the White House by embracing them.

We can’t endure another four years of fascist rule. The Republicans in the Senate have pushed through hundreds of right-wing judges, and another loss could corrupt our courts beyond repair.

Our deficit is rising precipitously and we can’t endure that for another four years.

Our air and water are dirtier than they’ve been in many decades.

Worst of all, we have lost our leadership position and any moral authority in the world.

A moderate won’t fix any of this. The attempt to get Democrats to run another moderate is nothing more than the 1 percent looking out for its own interests.

They’re scared because of the popularity of the true Democrats. Look at the party platform from 1976 and you’ll see the traditional values of the Democratic Party. You’ll also see they’re the same values being embraced by what Republicans are calling the “left wing” of the party, and by the majority of the American people.

Don’t fall for the lies of the Republicans and the oligarchy. Insist on a real Democrat to oppose the current administration and you’ll ensure a victory in 2020.

Why do I feel so angry all the time? Why doesn’t everyone?

With my vacation half over (I spent a week on Cape Cod camping with my sisters and leave tomorrow to spend a few days with friends before my granddaughter and her husband and daughter come to visit next week), I feel rested and restless at the same time.

I had an argument with my sister over whether we should shoot for an immediate move to Medicare for all, or whether it should be done gradually.

“I’m done with gradualism, ” I told her.

During the 12 minutes we’d been talking about this, another person died the way Mike did. I’ve heard every argument, and in the time it will take you to recite them to me, another person will have died the way Mike did. When you add them all up, it’s about a half million human beings, just in the 11 years since Mike died.

And now you want me to wait some more. Are we waiting until my other son dies? Maybe one of his kids or grandkids? How long are we supposed to wait?

I didn’t get all this out before she yelled at me to let her finish her argument. In that time, another person died. and since that time, another 100-plus people have died. I turned my head and started reading something on my phone because I didn’t want an ugly scene, but I knew I couldn’t convince her I’m right. She pays through the nose, but she has access to care. She had surgery in the last year for a condition that would have killed her had she been uninsured.

I can’t even begin to say how grateful I am for that.

I tried to tell her all this, but I just started crying instead because even after 11 years, the pain of my son’s death is as fresh and raw as ever, and in the time I took to try and explain that, another American died from lack of access to health care and his or her family is plunged into the same endless grief I experience every day.

Meanwhile, children languish in filthy cages with no sanitary supplies and no beds, separated from their parents in a strange land where they don;t know what people are even saying to them.

Meanwhile, the Earth continues to burn, hurtling us toward extinction in a few short generations.

Meanwhile, we contemplate war on Iran.

Meanwhile, the water in Flint and dozens of other American cities is still poisoned.

Meanwhile, the election districts are still gerrymandered and the elections are controlled by two utterly corrupt parties.

Meanwhile, the wealthiest of us continue to steal and hoard our wealth while half of our families live near or below the poverty level because those with the most money won’t pay a living wage for a week’s work and then they get to call poor people lazy because they don’t have enough money to meet their basic needs.

Meanwhile, we all go about our business, taking care of ourselves but not noticing how much trouble we’re in as a nation, as a species.

Meanwhile, a third of our nation continues to defend the hatred and ignorance spewing from the Oval Office, and we have yet to rise up in sufficient numbers to prod our so-called leaders into action to remove this criminal from office.

All the while, complacent people scream at me to “VOTE BLUE, NO MATTER WHO!!!!!!!!!!!!!!!!!!!!!!!”

No. No to all of it.

I will not shut up. I will not wait. I will not be patient. And I will not vote for another Wall Street-sponsored candidate.

I’m done with all of it. This is more than a national emergency, it’s a planetary one. It’s about our continued existence as a species, and you’re asking me to wait patiently?

Every day we wait, dozens more people die.

Every day we wait, children in Flint and other cities face irreversible brain damage from lead in their water.

Every day we wait, people languish in jail, losing their jobs and homes and children because they don’t have $500 bail money. So they wait in jail for months to be tried for a crime they may not even have committed.

Every day we wait, we edge closer to extinction.

Wake up. Stop waiting for somebody else to save us. We have to save ourselves, and we can’t do that by being patient.

‘What are you gonna do?’

Sherri White-Williamson, a specialist in energy regulation and law, who is retired from the EPA, now works to make all out energy safer and renewable, issued a challenge to everyone on the Poor People’s Campaign Truth and Poverty Bus Tour to go home and DO something.

In the three years my son battled cancer, he often played the Cancer Card.

What that meant was if he wanted something, or if he didn’t want to do something, he would whine, “But I have cancer!”  Then he would laugh, whether he got his way or not.

In the days before his death, he told me I was about to get a card that would be hard to top — the Dead Kid Card.

“I don’t want it,” I said. “I want nothing to do with it.”

He shook his head. “Doesn’t matter what you want. It’s there. It’s being dealt as we speak. What I want to know is what are you gonna do with it.”

I told him I didn’t know and he shook his head again.

“Nope, I want to know. What are you gonna do?”

I thought for a moment and told him I will work for access to health care for everyone. Real access, not a high-deductible insurance policy that just puts money in the pockets of the 1 percent, but real, meaningful access.

He sank back into his pillow and smiled.

“Good. I approve. You have my blessing,” he said. “Go get ’em.”

Eleven years later, I’m still working on it.

Last week, I went with some of my fellow activists in the NC Poor People’s Campaign on the National Emergency Truth and Poverty Bus Tour across the state to visit people affected by poverty.

We saw people doing, including the first homeless/formerly homeless Street Medic Team, based here in Asheville. We met homeless activists in Charlotte, several of whom got on the bus and traveled with us.

We met environmental activists in Robeson, Scotland and Duplin counties. One of them was Sherri White-Williamson, who retired from the Environmental Protection Agency and now works across Eastern NC as an activist fighting the deforestation causing catastrophic flooding, the proliferation of industrialized hog and poultry farming and the Atlantic Coast Pipeline and other fossil fuel enterprises.

Sherri spoke to us in Robeson County and again in Duplin, and she told us to go home and do something.”

“You’re all excited now, enthusiastic about working to improve things,” she told us. “But coming here and learning what’s happening is not enough. You have to go home and do something.

“What are you gonna do?

In the 11 years since my son breathed his last, somewhere near a half million Americans have died from lack of access to care.

I worked for the Affordable Care Act, even though I was uncomfortable leaving insurance companies in the mix because I feared they would work to sabotage the law — which is exactly what has happened.

So, I continue to work to educate people about why we need to do what every other so-called developed country has done — find a way to get access to health care to everyone.

But I can’t work in a vacuum. Health care is not the only issue we need to address because if we get health care to everyone and we don’t fix the environmental devastation or raise the minimum wage, stop the endless wars or fix voter suppression, we’re still screwed.

We need activists for this fight. We need people to work with us.

We as a nation need you to pick your issue or issues and join the fight.

We don’t need online petitions because they never, ever, ever result in any change. Never. Sitting at your computer and typing in your name, e-mail address and phone number does nothing more than give some political hack your contact information so they can inundate you with requests for money.

Donating to a cause is great — the Poor People’s Campaign could sure use some financial help, as could any number of other causes — but these are perilous times and we need people to be in the streets.

We need people who can register voters and educate people on the issues — God knows the corporate media don’t peddle much beyond propaganda.

We need people to run for office — school board, city council, county commission, state legislature — and work for real change.

We can’t do this if people just stay home and go along to get along.

We need you in this fight because this is a fight for our very existence as a species.

What are you gonna do?

Think about it. We don’t have a whole lot of time left.

 

Where do we go from here?

I’m not sure voting can get us out of this mess we’re in, but not voting certainly won’t.

 

We live in an empire in decline. In fact, this is far from the early stages of collapse.
I don’t know if we can stop it now, especially since those at the top won’t act on any of the emergencies we face.
We have refused to fix health care, even as tens of thousands of people die each year.
We refuse to act on climate change, even though scientists say if we don’t, this planet will become uninhabitable for humans. My great-grandchildren could be the among the last generation of humans who can live on this planet.
Our elections have become so rigged thanks to big money that our votes in some districts are next to meaningless.
The number of people living in poverty grows each year because we refuse to make business pay employees a fair wage. And poverty is lethal in too many cases.
Our infrastructure is crumbling and we refuse to invest anything to fix it.
I don’t expect any action against the criminal regime now occupying the White House, no matter what kinds of crimes are uncovered. In other words, we’re screwed and elections might not be able to save us.
Our obsession with military spending exacerbates all our other problems because we can’t pay to fix anything if we don’t stop investing in war.
But war is extremely profitable. That’s why the United States has been at war for almost all of its history.
And we can’t pay for anything until we get the wealthy to pay taxes again.
I’m not sure what we need to do, but we’d better do it fast.
I think impeachment needs to happen, but I doubt it will, no matter what kinds of crimes are uncovered. The Republicans in the Senate and those of both parties in the House who refuse to take any action against the crimes being committed, or the criminal committing them, are the ones to blame here. But they might lose campaign donations, so our lives, our county, our very existence, take a back seat to these campaign donations.
Nothing will happen unless we the people demand that it happen.
A phone call or an e-mail won’t do the trick. They ignore us. We can dial the phone or tap the keyboard until our fingers bleed, but they won’t listen because they believe the system is sufficiently rigged so that they can’t lose.
My two senators and my “representative” refuse to speak to me.
Thom Tillis’s people have actually hung up on me, and when Tillis was here as leader of the NC Senate, he had me arrested twice for trying to talk to him about health care.
Mark Meadows refuses me entry into his town halls.
Richard Burr won’t even allow me an appointment to speak to a member of his staff.
I’m afraid that even if we get a terrific turnout at the polls in 2020, we still won’t have enough of an effect to get the changes we absolutely need to see as quickly as we need to see them.
If we’re going to have an effect, we must take to the streets.
On May 1, this state’s teachers and the Poor People’s Campaign will march on Raleigh. We’re hoping to see tens of thousands of people on Halifax Mall outside of the General Assembly Building. If you want to see change, I expect to see you there.
If you recall, the Moral Monday Movement changed public opinion on our politicians here in North Carolina, but even with all that, we still have a Republican majority on the legislature here, although it no longer is a veto-proof majority, and we have a Democratic governor now.
Change takes time, and I’m not sure we have enough time left to us to fix this.
Also, don’t think this one rally will change anything. We need to combine direct action with a demand for fair elections, and then we all need to vote, and I mean every damn one of us. Vote for the person of your choice — it IS your vote after all — but vote.
And keep showing up. I’ve been doing health care activism for 11 years now and little has happened, but if I give up, I’m afraid we’re all screwed.
This is an emergency of epic proportions. If we can’t make change, and I mean really fast, we truly are doomed, not just politically, but literally.

One day

 

Me and Mike on his wedding day.

Today was Monday in 2008, Mike’s last full day with us.

The house was empty except for Rob, Mike and me, and he seemed to appreciate the quiet. He was allowed to smoke in the house because as much as I hate tobacco, I was not about to deprive him of it.

Somebody, I don’t recall who it was, had suggested in these final two weeks that he should quit smoking — conquer that final addiction — before he died. His response was to smile and light a cigarette. He didn’t want to die totally virtuous, after all.

There wasn’t much left he could eat, and none of it was particularly good for him. He could still drink coffee with almond milk. He also could take a few bites of Frosted Flakes doused in chocolate almond milk. And he could nibble on good chocolate. He had given up Cadbury Creme Eggs because everyone knew they were his favorite candy and we were inundated with them. For years, he had bought all he could in the weeks before Easter, claiming he would make them last until the next spring. But they were usually gone within a month of Easter. During these final few weeks of his life, it seemed no one crossed the doorway to his room without an offering of a half dozen or more.

Finally, a few days before he died, he told me he couldn’t eat another one.

“I’m Cadbury Creme Egged out,” he said as he gazed at the one in his hand. “I think I’ll have to wait until next … ” he paused and looked up at me. “I think I’ll have to let other people have them. I keep forgetting I won’t be here next year.”

It was said matter-of-factly, as though he had forgotten his raincoat on a drizzly day. But it slapped me in the face and forced me back into the moment. I had to live in the moment because I had so little time left to do that with him.

Rob went to work that evening and Mike and I watched Star Trek and nibbled on good dark chocolate. We watched an episode from the original series and then the episode of Deep Space Nine where the Klingon character, Worf, joins the crew.

“You know, I’m having a good time here,” he told me as Worf stepped onto the space station on the television.

Here he was, confined to a hospital bed in a small bedroom. His life had been reduced to a tiny room with a bed, a dresser, a single chair and a TV, and he managed to find joy.

“I have everything I need here,” he said. “I have my TV, my Playstation, Boo Bankie, Idiot Bear and you, my personal valet.”

Boo Bankie was the tangled remnants of the blanket I had crocheted him when he was a kid. As it had unraveled, he had tied the ends together until it resembled a blue football-shaped mass with bits of red in it. I still have it under my pillow.

“I’m not sure I’ll ever be able to complain about anything again,” I told him.

“Oh, I have faith you’ll find a way,” he said, smiling.

If only we’d been able to get him the screening tests he needed. If only he’d been able to get health insurance. If only even one doctor in Savannah had given a rat’s ass about his precious life. If only we hadn’t lived in the most ignorant and immoral nation on Earth when it comes to health care.

Here we are, the richest nation ever to exist and we can’t even offer the basic level of health care to our people that every developed nation — and even some developing nations — offers its people. Our health care outcomes are the worst among the developed nations, and worse than many developing nations, even though we spend about double per capita what other nations spend. How can people not understand that?

People still tell me we can’t afford it because they believe the lies put out there by Big insurance and Big Pharma. We could have saved my son’s life for a fraction of the cost of allowing him to die. We could save tens of thousands of lives every year, one precious soul at a time, instead of killing them with criminal neglect.

Mike was developing a pressure sore on his elbow. He didn’t want me to bother wrapping it in soft cloth, but I insisted. Lifting his arm was like picking up a broomstick. He had no muscle left.

When I finished wrapping the sore, he sighed.

“You were right,” he said. “This does feel better. Thanks.”

He closed his eyes and drifted off to sleep. I sat and watched him for a little while, just trying to be present in the moment. I knew we had few moments left.

On this day, in this moment, I had just 18 hours left with him.

 

 

 

One final belly laugh

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.

 

It was Sunday on this date 11 years ago. The crew from Savannah spent the morning and early afternoon with us, and when Mike was tired and needed a nap, they headed back south.

I took the opportunity to soak in the hot tub for a bit with two friends who were helping Mike plan his memorial service. He didn’t want to leave anything to chance. That service would reflect his desires for a funeral he’d be sorry to miss.

As we came back into the house, there was an insistent knock on the door, as though someone wanted to deliver an urgent message. When I opened the door, there was a woman I’d seen drive by a couple times, but I didn’t know her. She was tastefully dressed, a little overweight, had an unnatural shade of blonde hair and way too much makeup.

“What the hell are you doing parking all these cars on my street!” she demanded. “People have to drive here, you know. You don’t own the street and I’m getting tired of dodging all these party cars! I don’t know how long you’ve lived here, but you should know we don’t put up with that in this neighborhood …”

She ranted on for a minute or two and when she finally stopped to take a breath, I spoke.

“First of all, this is not your street. My taxes pay for as much of it as yours do,” I said.

She opened her mouth to speak again, her face still angry. I held up my hand.
“Nope,” I said, “I’m not done. These cars belong to friends of my son. They’ve come to say goodbye. He’ll be dead in a few days and then you can have your road back.”

I started to close the door and she put up her hand to stop me.

“Wait! Oh my god! Is there anything I can do?”

“Yes,” I said sweetly, “you can drive carefully so none of these people has to the add the burden of car repairs to that of the grief of losing a friend.”

And I closed the door.

Even 11 years ago, some people were mean-spirited by nature and not afraid to show everyone they encountered that they wanted people to do everything their way.

Later another neighbor would see me outside and ask, “I saw a lot of cars over the last week or so. I know it’s not always a good thing, so I just said a quick prayer that everything’s OK.”

Now, that’s the way to ask why there are so many cars parked on the street.

The nasty neighbor has never spoken to me again.

Mike woke up a little while after the angry neighbor left, and I told him what had happened. He had a good laugh over that.

“Oh, I wish I could have seen her face,” he said. “I’ll bet she was horrified. Good for you, Mom. Good play.”

It would be our final Cancer Card moment, his final belly laugh.

In 48 hours, he would be gone and I would never hear that laugh again.

When people tell me we should fix health care gradually so businesses and the economy don’t get hurt, I ask why they want to put the welfare of corrupt insurance companies and Big Pharma over that of the 35 million Americans who still don’t have access to health care, plus another 12 million or so whose insurance has such high co-pays and deductibles that they can’t afford to use it. That, after all, is the very basis of fascism — money over people, the good of corporations above the welfare of human beings.

Some 30,000-plus people are dying every year the same way my son did. and we have done almost nothing.

Yes, insurance companies can’t deny people with pre-existing conditions insurance anymore. In states where Medicaid has been expanded, poor people finally have real access to care.

But Big Insurance and Big Pharma don’t want these changes to stand and they’re paying out huge amounts of money to walk back what little ground we have gained.

Every day we don’t fix this, people die unnecessarily. Every damn day, more family members and friends go through the hell my family and I have gone through. In fact, about three times every hour, another American dies of lack of access to care, just they way my precious son did.

As I count down these days again every year, I spend a good part of my time in tears.

Why can’t we see that people shouldn’t be dying like this when it would actually be cheaper to take care of them — both economically and morally? I tried to explain this to someone yesterday who just said, “I don’t believe you. We can’t afford it,” and turned her back, completely unwilling to listen to anything not sanctioned by the liars at Fox News. I wanted to scream, to call her a fucking fascist, but I walked away instead.

On this beautiful spring day 11 years ago, I so desperately wanted to hold onto him. I still wish I could go back and get him. I think I’d want to take him along on the coming cross-country road trip with my pregnant granddaughter. I can’t even imagine what an adventure that would have been.

I tried to soak up all I could of him during these final days.

On this Sunday 11 years ago, everybody cleared out. James, Mike’s closest friend, and Janet, who still loved Mike and who was still adored by him, went back to pick up mail and check in with their bosses. Janet’s boss would fire her for not coming in on Monday; James’s boss told him to take whatever time he needed. They were both planning on returning Wednesday. Mike would not be here to greet them.

On this beautiful Sunday 11 years ago, we would have just two days left with Mike.

 

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.

 

 

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