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.

#MeToo meets Uncle Joe

 

I’m not calling on Joe Biden to leave public life over his creepy way of getting in a little too close to women, but we we try to have a conversation in light of #MeToo, we need to understand that we’re just trying to figure out where we draw the new line of what’s proper and what isn’t.

 

I’ve spent much of the morning replying to comments from men about how “snowlfakes” are over-reacting to a woman’s complaint that Joe Biden invaded her personal space.

I have asked each man why they think a man has a right to invade my personal space and hug me, rub my shoulders or smell my hair without getting permission.

I also have asked when they were raped or had other sexual violence perpetrated against them — something that would give them the right to lead this conversation.

The #MeToo Movement has opened doors to a redefining of what’s proper behavior and what crosses the line, and we’re still pretty early in that discussion.

Women have been second-class citizens for millennia, and we’re finally seeing cracks in the wall of toxic patriarchy. What we need now is a new definition of that line men shouldn’t cross in dealing with women, and we won’t get that without an adult conversation about women’s very real trauma.

While it’s easy to say we shouldn’t criticize Uncle Joe while the pussy-grabber is still squatting in the White House, my point is that this is an urgent and necessary discussion. In fact, we must talk about it if #MeToo is going to lead to meaningful and permanent change.

What’s more, this is a discussion that must be led by women. Men need to listen, even though that may be hard.

My husband has never raped me or treated me with disrespect, but this is not a discussion where he’s going to take the lead (fortunately, he respects me enough to know that), because he’s not the one who has suffered from the patriarchy, I am.

Women are the ones who have been harmed in so many horrible, cruel and humiliating ways. We have been blamed for the violence perpetrated against us and punished every moment of our lives, just for being female. We have been denied the vote, denied credit, denied jobs, denied equal pay, denied autonomy, had our children taken from us when we left their fathers in fear for our very lives, denied sanctuary from violent men.

The list goes on, but you get he gist here. Men have been the oppressors and still carry a great deal of privilege. Men speak over me and minimize the trauma I have suffered at the hands of men. They told me my menstrual periods weren’t that bad when I was doubled over with a pain they’d never experience. They told me I was lying about what I was eating when I started gaining weight for no apparent reason, and then told me I was doing great when I was so depressed I lost my appetite and lost a whole lot of weight.

These things don’t just happen, they are deeply embedded in society, and we need to dislodge these behaviors. #MeToo is about we women using our voices to seek justice and societal change in attitudes toward women.

Men want to know what’s appropriate, and when we hold up Joe Biden and say, this is a little over the line, men (and some women) scramble to defend him.

The conversation here needs to be about where we’re going to draw that line. It has little to do with Biden’s qualifications to be president and everything to do with whether his behavior will continue to be seen as acceptable.

I love a good hug. There are few things more calming and reassuring. When my son was sick and after he died, I sometimes needed hugs just to stay upright. But I gave permission for those hugs, or I asked for them.

Before my son got sick, I wrote a huge piece for the paper here about how the state was neglecting children with disabilities that changed state policy and then won a big award. I e-mailed the notice of that award to my editor, who then came running out of his office, stopped a few feet from me and said, “Can I give you a hug? This is so huge, I just don’t know how else to respond!”

He got his hug, along with my undying respect.

All we’re asking here is that before you touch us, show us the basic respect of getting permission first. It is not too much to ask. I don’t care if you’ve never raped a woman and never will. Please, just give us the basic respect of asking permission before getting all over us, no matter what the circumstances.

A lot of us are creeped out by overly close men because men have hurt us. No, I don’t blame every man for the deeds of a few of them, but you have to understand that men have caused my trauma, and if you’re a man, you need to be aware of that.

If you stand a foot away from me and I take a step back, that probably means you’re too close and I want to have my space. If you take that step closer to insist that you control the rules of engagement, I will walk away.

The conversation about the new rules of engagement needs to happen, and it needs to happen in a civilized manner.

If you’ve never had sexual violence perpetrated against you, you probably won’t fully understand the necessity of this conversation. That means you probably shouldn’t try to lead the conversation.

Joe Biden seems like a good guy, but he is also a perfect example of a man who needs to step back a little. And those who defend him, and those who criticize women who are trying to talk about this, need to sit down and listen.

I understand that the rules have been one way for millennia, and that they’re changing rather abruptly, but that’s not an excuse to condone behavior that makes women uncomfortable — or worse.

We’re working on new rules. You can join the conversation or not, but this will happen either way.

I know the ending

Michael, age 3, playing with his food.

So, here it is. April Fools’ Day. Mike Day.

I’m forced to re-live this time every year, the final days of my son’s life. I can’t turn away, I can’t shut it out.

The story unfolds over the course of six weeks as the possibilities of life-extending treatment shrink. Finally, there is nothing.

That’s the problem. I know the ending. As my long-running family joke goes, “the guy dies.” That came from a comment my mother-in-law made as we sat down to watch a TV show she had seen.

“Oh, I saw this one,” she said, excitedly. “The guy dies.”

It’s my family’s code for a spoiler alert.

So, every year, as I am forced to re-live these final days of my son’s life, I can hear his voice saying, “The guy dies, Mom.”

I can’t even begin to describe the ache. There are no words. You can’t know unless you have lost a child to injustice.

Like so many others, I have become passionate about eliminating the cause of my child’s death. And I have lost friends over it. I understand people must grow weary of my grief, and it’s OK if it;s too much for them; I can’t walk away from it. I can’t escape it, so I have to act on it.

Get over it, people tell me. Move on. Mike would have wanted that.

Well, most of these people never met Mike. None of them ever felt his passion for the marginalized. None of them was in the room when he gave me his blessing.

So, today, we wear plaid because it was Mike’s favorite color. Yeah, I know, but that’s who he was, ever the jackass.

At his memorial service, his Savannah friends came to me and told me that henceforth, April 1 would be Mike Day, since he was the consummate fool, and everyone would wear plaid.

So, today, I sport a plaid shirt, plaid socks, plaid sneakers and a plaid baseball cap with a Red Sox logo, which would have pissed him off no end because he was a rabid Yankees fan.

Eleven years ago today, Mike told me he was tired and didn’t want to get out of bed. That was fine, of course. He had the I’m Dying Card, and that was un-trumpable.

I ran some errands and came home at noon to find him napping. I ate lunch, and the hospice nurse came at 2.

We couldn’t rouse him.

”He’s between here and there,” she said. “He’s transitioning.”

This could last hours or days, she said. But I knew he wouldn’t stay that long, so I called Danny and told him Mike had hours to live. I asked Rob to call Mike’s dad because I just didn’t have it in me to hear him sob.

Then I sat down by his bed.

”He could be here for hours or even days,” the nurse said. “You need to take care of yourself.”

I saw him into this world and I would be damned if I wasn’t going to be the one to see him out, I told her.

Rob had gone downstairs to e-mail work and tell them he wouldn’t be in and I sat and talked to Mike. I talked about how much he had given me, about how proud I was to be his mom, about how I would fight for the lives of others as hard as I had fought for his.

He woke up a couple of times and told me he loved me, and then he reached out and called my sister’s name.

My older sister, Ellen, had died a year and a half earlier, and we all knew she would be the one to come fetch him Home. She was way too bossy to allow anyone else to do it. A few minutes later, at a little before 4, he was gone.

On April Fool’s Day, of all days.

I had convinced myself that I would go with him, that my heart would stop when his did. I was so pissed to be sitting there. It was — and is — so unfair.

Later that night, James and Janet arrived and we went out to dinner. I wasn’t hungry. As we sat at the table, Rob took my hand.

“No mother ever loved a child more than you loved Mike,” he said.

“A lot of good it did,” I said.

I miss him every moment of every day. Everything makes me think of him. I can’t take a batch of bread out of the oven without hearing his voice, his mouth full of warm bread with the butter just beginning to melt: “The only thing wrong with this bread is that it isn’t at my house.”

Sometimes I wish the phone would ring at 11:30 at night and I could hear, “Hi Mom, I knew you’d be up.” These conversations could last two or three hours and meander through topics as varied as Star Trek, Monty Python, history, philosophy, food, politics and the asshole driver who had cut him off that afternoon.

Sometimes he’d call me when he was stopped in traffic so he could vent. He’d alternate between talking to me and yelling at the driver in front of him.

“Hey!” he called out his car window, “It’s the long thin one on the right! You push down on it with your foot and the car goes faster!”

I miss his foul mouth and his maniacal laugh.

I miss opening my secret stash drawer and finding no dark chocolate there because you couldn’t hide anything from him.

I miss his love for his cats and his obsession with good food — especially the dark chocolate creme brulee.

I have been robbed of these things and so much more.

Eleven years ago today, the heart of my soul stopped beating.

So tell me again how I have to vote for somebody who won’t pledge to fix health care NOW. Not in 10 years, not in five, but immediately.

Don’t even think about trying to shame me into voting for another “centrist.” If you’re not for fixing this right now, we’re done.

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.

My vote is reserved for someone who will fix health care

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.

Eleven years ago today, hospice came.

Mike had slept in the bed in the spare bedroom that first night here, but the nurse said he’d be more comfortable in a hospital bed, and she had one here in a couple of hours. She was right. You could see it on his face as soon as he settled in, raised the top and picked up his game console controls.

Part of the visit was an intake interview.

“Do you use tobacco?”

“Yup and I’m not quitting now.”

“Do you use drugs or alcohol?”

“Not for the last 11 and a half years.”

“Good for you! What was your drug of choice?”

Mike leaned closer, his eyes sparkling. “Whadaya got?”

He got the reaction he wanted, a shocked look.

“I was whatcha call a garbage head,” he said, smiling. “I would do anything that altered my brain in any way.”

Mike had sobered up on Nov. 9, 1996, and he had worked with 12-step groups in New York, Savannah and Raleigh. He often went to beginner meetings because he knew people new to sobriety needed help.

“As soon as you smelled fryer oil, you knew the meeting was going to be a good one,” a friend of his told me. “He would come right from work, and he was so wise, so compassionate. You just knew if he was there, something good was going to happen.”

Anyone who needed to talk knew they could call Mike and he’d listen. No matter what time of day it was, no matter how much he had going on, he always made time for someone who needed to talk.

I was feeling pretty smug because I believed I would die when he did. Yes, I know there’s nothing logical about it, nothing even remotely logical. But I had somehow convinced myself that I wouldn’t have to go on without him. And yes, I had another son, two fabulous daughters-in-law, a loving husband, four grandchildren and sisters and friends. That didn’t matter to me.

Mike was born on my birthday, and he and I were so alike, we often didn’t need to talk, although we always did. He had my sense of humor and my passion for justice.

We had long, rambling conversations about everything imaginable, although he could lose me in the weeds when he got into philosophy.

And he was particularly delighted when he could combine philosophy and wise-assery. He knew every word to Monty Python’s Philosopher’s Song, not to mention “Every Sperm is Precious,” and “Always Look on the Bright Side of Life.” He could recite huge swaths of dialogue from Monty Python and Mel Brooks movies. In fact, he and his wife’s stepfather used to put on German helmets from Bob’s extensive military artifacts collection and sing, “Springtime for Hitler,” from “The Producers.” They invited me to sing along, but I just couldn’t bring myself to put on a German helmet and join in. It was too much fun watching them.

Mike was a foodie who loved working in restaurants except for the lack of health insurance. He went back to school because he knew he needed another career, and he had chosen law. He was planning to be a legal aid attorney, and he would have been a damn good one.

But our broken health care system derailed his plans. It shouldn’t have. We have dozens of models for a just health care system from every other industrialized country in the world. But corporations have more power than people do in this country. They have co-opted our democracy to suit their needs, and they have used every immoral method in their playbook to maintain a stranglehold on progress of any kind.

The Affordable Care Act would have gotten my son the insurance he needed, although it might not have covered annual colonoscopies because the insurance companies have maintained control, with the full cooperation of both corporate-owned political parties.

Somewhere near a half million people have died in these last 11 years. I think that’s enough already.

Condemn me all you want for my hard-ass stand, but I will not vote for anyone who won’t support the Medicare for All bill that would have everyone covered within three years. That’s my line in the sand.

This is a national emergency and it’s long past time we treat it as such.

If the creature currently squatting in the White House steals another election because the Democrats won’t give us a viable alternative, then we as a nation get what we deserve. I will not accept any blame. I played along once and the DNC rigged the primaries to get their flawed candidate on the ballot. I dutifully voted for her.

I bought into your “anything is better than that clown” line in 2016. Now, considering that the definition of insanity is trying the same thing again and again and expecting a different outcome, I would say anyone who falls for that again is the fool, not those of us who refuse to do so.

Some 70 percent of voters want this. Even 52 percent of Republicans are on board. This is not an unreasonable demand and I will not back down again. You will fix this, Democrats, or you will go down with the Republicans and it won’t be pretty.

I have had to live these last 11 years without my precious son. I miss him every moment of every day and the pain I feel constantly won’t let up until I join him.

There are a half million people who have landed in this boat with me since my son died. It’s time for action.

 

 

 

 

 

‘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.

 

 

Jailed for justice — this time on Facebook

The US Chamber was so deeply offended by my comments about health care that it apparently reported me to Facebook and I am in jail for I don’t know how long.

I went to post something this morning on Facebook only to discover I can’t post, comment or even like anything.

I’m afraid I’ve been a bad girl. See, the US Chamber of Commerce has been boosting a post about how I need to tell my member of Commerce how terrible a not-for-profit health care system would be and how it would hurt so many businesses.

The damn thing has been on my timeline five or more times every day, so I started commenting on it, mentioning how many people die each year so these businesses — insurance companies, pharmaceutical companies, medical device manufacturers — can make obscene profits while parents like me watch their children die from lack of access to care, about how people with insurance still can’t afford their medications or even recommended care.

I did it three times in the last two days and suddenly, big business is so deeply offended it reports me for harassment. Like their lies on my timeline every day aren’t offensive. Like they’re not being intrusive by spending tens of thousands of dollars to get their lies on everybody’s timeline. I call them out and I get silenced.

So, my son is dead from this for-profit mess and I have to see these US Chamber of Commerce posts all over my timeline, but if I reply with a critical comment, I get booted.

Well, I won’t be silent, not about health care or minimum wage or voting rights, about our so-called justice system, about our violation of human rights in the way we jail immigrant children who have been ripped from their parents’ arms so for-profit prisons can abuse them, or about education or the environment. And I especially will not be silent about the corporate takeover of our government and of every aspect of our lives.

I won’t be silent about Big Business’s takeover of the Democratic Party and the party’s abandonment of its traditional values (check out the 1976 party platform for a synopsis of what our values were just 40 years ago).

And the DNC needs to know that I will not vote for a candidate who will not commit to Medicare for All in the next two years (it’s a big effort, so I’ll allow up to two years to get it up and running), an immediate raise to a $15 minimum wage, with annual $1 raises until the wage reaches what it would be if it had been tied to inflation ($23 right now) and passage of the election reform law the Democrats approved in the House and Mitch McConnell is blocking in the Senate. That has to be followed by a credible effort to address climate change NOW.

The vast majority of Americans want Medicare for All — 70 percent overall, and 52 percent among Republicans. If the DNC continues to try and paint this as leftist and radical, it does not deserve to win an election ever again.

We are not radicals for wanting these things. We should not allow ourselves to be portrayed as such.

When we see articles like the one that appeared in the NY Times in Sunday and one that ran in the Washington Post yesterday, claiming a “centrist” is the only candidate that can defeat the creature currently squatting in the White House, we need to rise up and demand more.

Our positions are reasonable on these issues; the DNC positions are not.

You can try to silence me, but I won’t shut up. I won’t go away. I will continue to call out the lies of the oligarchs who are in control of this country right now until they’re defeated or until they kill me.

And here’s why:

Eleven years ago today, I still held out faint hope that I would have a few months left with my son. We hoped to take a road trip to New England and New York so he could see family and friends there one last time. He needed to gain 2 pounds before his next chemo appointment.

But it was not to be. In six days we would learn that the chemo wasn’t working.

On this day 11 years ago, we had just 20 days left with my son.

 

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