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.

 

I’m not being radical when I insist on Medicare for All, and neither are you.

My son, Mike. This is before he began to starve. I promised my family I wouldn’t show photos of him as he neared death because it’s just too painful for them to remember him that way.

Eleven years ago today, I talked to Mike about what he’d been able to eat. At last Tuesday’s chemo appointment, the doctor had said he needed to put on two pounds before the next chemo session. He was down to 104 pounds. If he couldn’t put on weight it was because the cancer was causing his body to not absorb nutrients. He was starving to death, in other words.
While he was having his infusion, I walked over to Duke Chapel. If you’ve never seen the Duke Chapel, you should know it’s magnificent. It seemed like a good place to beg for two pounds.
Since Tuesday, Mike and I had talked about food and little else. What was he eating? How much? Other than a couple of Cadbury Creme Eggs, that is. Half a bagel. A scrambled egg. A couple of bites of a hamburger …
The question was whether this would be enough to put on two pounds.
I’ll bet most of you have never watched your child starve to death. It’s a terrible thing. No, beyond terrible. You can’t ever get that picture of your frail, starving child out of your head. Even when I remember him as healthy, that vision intrudes to tell me, “Yeah, but this is how the story ends. The guy starves to death.”
Try and stay calm about health care policy when your starving kids keeps popping in to remind you health care should be a human right.
Yes, I come off as angry. That’s because I am, and justifiably so. My child was killed by this system. Sixteen years before my son was murdered by this system, in 1992, I was writing about the failing of our health care system. We had 17 million uninsured Americans then. Today we’re happy to see the count down from a high of 45 to 50 million uninsured in 2013 to about 35 million now. That’s right, we’re celebrating that the number is only double what it was in 1992, when Bill Clinton was promising to try and fix it. Of course, the health care lobby swooped in and vilified Hillary and spread blatant lies about how Medicare for all would kill us all.
So, we got nothing, and 11 years after my son died, we’ve made very little progress.
In 2010, two years after my son died, we abandoned all hope of pushing a sensible health care system through Congress. President Obama caved and started negotiating with a Republican-crafted plan, asking for a public option — a way for ordinary citizens to buy into Medicare instead of lining the pockets of some for-profit insurance company. But that was too much. We had to leave the profit-hungry insurance companies in charge of our “care.”
Still, I got on board. I pushed for passage of the Affordable Care Act and celebrated when it passed because we had made some baby steps.
Then the Republicans refused to cooperate, suing to try to overturn the law and getting the bone from the Supreme Court of allowing states to not expand Medicaid.
I stayed on board, training to be a Navigator so I could help people find insurance, and with it, the care they needed.
Well, Republicans continued to attack the law, voting some 70 times to repeal it, and managing to weaken it. The Marketplace plans have become more and more unaffordable for too many people, and the numbers of uninsured are rising once again.
But something that happened last summer broke me. A woman came in looking for an insurance plan for her 30-year-old son. The young man had health problems that prevented him from working full-time, so his income didn’t quite reach poverty level. In North Carolina, that means you’re shit out of luck, and I had to tell her that, albeit in somewhat more polite terms.
She began to weep. “My son is going to die,” she sobbed. “Do you know how that feels?”
I told her I know exactly how that feels and we hugged and cried.
That was my last appointment as a Navigator. I can’t continue to be a good little peasant and beg for crumbs. I can’t continue to be polite when more than 20,000 Americans are dying each year from lack of access to health care.
And I will not continue to vote for candidates who promise a gradual fix, knowing full well they’re not going to get anything done.
If you want my vote, you will come out for an immediate system overhaul. No more, “we can’t do it because insurance companies will suffer.” or “it’s too big to do it all at once.” You will support Medicare for All or you will not get my vote.
I will work to get others to make this same pledge. I will work to make you unelectable if you don’t support getting people the care they need. If enough of us come out and make this pledge, Democrats might figure out they can’t win without us.
Eleven years ago today, I still had a glimmer of hope that I might have a few months left with my precious son. It was not to be. We had three weeks and one day left.

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.

Poverty is lethal — and it’s not necessary

These things all take time, something that poor people have very little to spare.

I saw a meme the other day about how to nurture a child. It included things like reading together, praising, practicing relaxation exercises together, taking walks together — the operative word here, of course, is together.
It all boiled down to quality time, and it set something off in me.
I commented that people in poverty, people who have to work two and three jobs just to keep body and soul together, might not be able to do all these things, and some woman said, “These things don’t take money, LOL.”
I was furious.
LOL? Really? I asked her whether she had ever skipped a meal to make sure there was enough, for the kids, LOL. I mean, that one’s a regular LOL riot, isn’t it?
People with the privilege of a living wage have no idea what it’s like to live in poverty, of how the system keeps poor people down.
Let’s say your three $8-an-hour part-time jobs pay the rent and for food, but just barely. You’re already working 60-plus hours a week, so you can’t just get another job. Your crappy apartment is $1,200 a month and the landlord won’t take care of the leaky faucet or the hole in the kitchen floor. The heat quits regularly. But this is the best you can find for what you can pay.
Poor people can’t afford a flat tire. Poor people can’t afford to be sick.
So, let’s say the flat tire means the utility bill is late. When the power gets shut off, you don’t just have to pay the amount due, you have to pay a service charge, which might make your rent late this month.
When you get home to your kids, it’s already supper time. Have they done their homework? Well, you can ask that after supper, unless, of course, it’s already bed time. Should you read to your child or do the laundry? Last time your kid showed up to school in a dirty shirt, the school threatened to call in Child Protection Services for neglect. So you do the laundry.
If you can’t afford a car — and  millions of low-wage workers can’t — you need bus service, which just isn’t available in rural areas, and in bigger towns and cities, a bus ride across town can be an hour and a half.
And what about when you have to work evenings or weekends? There are no child care centers open for evening, overnight or weekend shifts.
Poverty is completely unnecessary. It is a political construct designed to create a permanent underclass to serve the very wealthy.
When my boys were little, the only way I could get help with day care was to quit my job and go on Aid to Families with Dependent Children.
I decided to work. I worked hard, but I just couldn’t get ahead. Every time I got caught up, something happened to set me back — and when you’re barely getting by, a flat tire can set you back six months. Forget about a new starter or alternator. I once spent a month parking my car on hills so I could do a rolling start because I couldn’t afford a new starter.
When my older son was 7 he became a latchkey kid because I had money for groceries or day care, but not for both. He would call me when he got home from school, and when I hung up, I would go into the bathroom and cry because I couldn’t take care of him the way I wanted to.
The school was constantly after me because my younger son was severely ADHD and they wanted him on drugs, even though his grades were stellar and he consistently tested in the 98th and 99th percentile in verbal abilities, reading and math. Finally, they reported me to Child Protection Services for neglect. I couldn’t afford an attorney to fight it, so we tried the Ritalin. He hated it. Said he didn’t feel like himself when he took it. But the teacher was happy because he wasn’t up out of his seat during class.
After 3 months, he begged me to take him off the drugs. I told him he would have to find a way to sit still because the risk of him being taken away from me was very real.
I couldn’t afford private school, which would have recognized his abilities, so we had to do this right in a public school setting where the most important thing wasn’t his brilliance, but the teacher’s need to have a quiet classroom.
Michael stayed in his seat every day for three months. When his teacher called to say he’d been disruptive that day, I confessed we’d thrown away the last three months’ supply of the drug and we would not put him back on it under any circumstances. I threatened to go public if they attempted to take him from me, and they let it go.
By this time, I had remarried and although I still couldn’t afford an attorney, I was not in poverty any longer.
But then Michael started experimenting with drugs, and by the time he was 15, he was dabbling in all kinds of stuff. Later, after he’d been clean and sober for several years, he told me the gateway drug had been Ritalin. It had altered his mind when he was on it, and made him wonder what other drugs might do. He insisted he wouldn’t have tried other drugs if he’d not been on Ritalin. I believed him.
At age 19, he took some time off school and was removed from our insurance plan. We didn’t realize that time off school would mean he’d never be able to buy insurance again, and in Savannah, Ga., no doctor would do a damn thing for him until it was too late to save his life. That time off school turned out to be a death sentence for him.
Poverty is lethal. It is deeply, deeply immoral. People who are affected by it suffer and die needlessly, while people of privilege call them lazy.
Poverty is a choice made by legislators and policymakers to allow some people to suffer. And it must end.
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