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

June 26, 2019 Uncategorized One comment

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

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

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

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

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

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

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

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

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

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

Meanwhile, we contemplate war on Iran.

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

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

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

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

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

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

No. No to all of it.

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

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

Every day we wait, dozens more people die.

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

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

Every day we wait, we edge closer to extinction.

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

One final belly laugh

March 30, 2019 a world of progress, letters, media, progressive living, progressive media center No comments

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.

 

My vote is reserved for someone who will fix health care

March 19, 2019 a world of progress, letters, media, progressive living, progressive media center No comments

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

March 18, 2019 a world of progress, letters, media, progressive living, progressive media center No comments

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

March 16, 2019 a world of progress, letters, media, progressive living, progressive media center No comments

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

March 13, 2019 a world of progress, letters, media, progressive living, progressive media center One comment

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.

 

Ten years later, we’re still not getting health care to people in need

March 18, 2018 a world of progress, letters, media, progressive living, progressive media center No comments

Ten years ago today I brought my son home to die.

It seems like so much longer than that since I’ve heard is crazy laugh or heard him cuss.

It seems like yesterday when I realize that the pain is still as fresh as ever.

His doctor had told him two weeks earlier that if he didn’t start putting weight on, it would be clear that the chemo wasn’t working. They wanted to see him gain 2 pounds. That’s all, just 2 pounds.

I had gone to Duke Chapel to pray for those 2 pounds, telling God in the middle of this opulent place that 2 pounds wasn’t too much to ask, was it?

I also knew it might not happen. I knew my son’s days were limited, but I wanted as many days as I could have. As I sat in that beautiful place, I began to think about what would be after he was gone, what I would do in the midst of unimaginable grief. It was there that I began to think about how I might work toward a public policy that meant other mothers wouldn’t have to endure the pain I was facing. I feel as though my mission began in that sacred space.

If my son had gotten the care he needed, he wouldn’t have developed cancer. If we had lived in any other developed nation in the world, my son’s medical needs would have been met. This needed — still needs — to happen here.

As we sat in his living room before going to the chemo appointment, he looked at me and said, “I’m ready for this to be over.”

I was not.

But when we got to the clinic and he stepped on the scale, he had lost another pound.

“I tried,” he said, fighting back tears. “I really tried.”

We had fought this cancer for three years. The hospital in Savannah, Memorial Health System, had nearly killed him three times in the first year, and Dr. Herbert Hurwitz had taken him on at Duke University Medical Center and worked as hard as we did to try to save his life.

He was (and still is) accused by some of being lazy and wanting a handout because he didn’t have health insurance and couldn’t afford to pay tens of thousands of dollars for his care.

He was treated in Savannah as someone who didn’t deserve care. It felt as though his very humanity was being denied. His surgeon was so obvious about his lack of concern and caring that I was tempted to slap him, and I am committed to nonviolence. I did drop the F-bomb when the doctor said they wouldn’t do any more to save him except “maybe a little chemo.”

He had been forced to leave his wife and depend on others to pay his bills as he waited 37 months for the disability he deserved. He was dead nine days before the first check came.

But until this day, we’d held out hope that we might be able to save his life. Even if he was to work to pay off his medical bills into his 80s, we hoped we could keep him with us.

Today, a Tuesday in 2008, was the day we learned there was no more hope. My son was facing death and I was facing life without him.

As we left the clinic, I was pushing Mike in a wheelchair because he was too weak to walk to the parking garage. He turned to me as we entered the parking garage.

“How much time do you think I have?” he asked. “Two weeks?”

“Oh, God, I hope it’s more than that,” I said. I was talking to God as much as I was answering my son’s question.

I called his dad to tell him the news and he began sobbing.

“There has to be something we can do,” he said. “I survived colon cancer, I thought he would, too.”

“You had the best care money could buy,” I said. “You got to go to the Mayo Clinic; Mike was relegated to a backwater health clinic with people who held him in utter disdain because he couldn’t pay. Your lawyer got you disability in three weeks; Mike’s still waiting after three years. What the fuck made you think everything would be OK? His experience was the exact opposite of yours and you were never even aware enough to see that through your privilege. I’m sorry, but I don’t want to hear this from you.”

We stopped at his apartment, where his roommate, James, and my daughter-in-law were already waiting. They helped me load his few belongings into my car and promised to follow us within a few hours. Mike took an extra dose of pain pills because the four-hour ride would be extremely painful otherwise. He had resisted using pain meds, but his medical team had finally convinced him he deserved to have relief from the constant pain.

We had to stop halfway home to get a memory foam pillow because he had no fat left on his backside and he was uncomfortable. We bought a walkie-talkie so he could call us whenever he needed anything, and we took turns with it so someone would always be on Mike duty.

We didn’t know how much more time we would have with him on this day 10 years ago, but we were determined to soak up every moment we had left to us.

Ten years ago today, I brought my precious son home to die. We would have just 14 more days.

It seems like forever. It seems like yesterday. I still miss him to the very depths of my soul.

No one should have to die the way he did. No mother should have to watch a child die the way he did.

Ten years into this grief, I rededicate myself to the mission. I will fight for universal access to quality health care. I will fight until we achieve health care justice or I will die trying.

I will not stop. I will not shut up. I will not go away.

 

 

The tarnished tiara

November 3, 2017 a world of progress, letters, media, progressive living, progressive media center 2 comments

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

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

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

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

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

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

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

Mike, age 6.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Holding out hope for the party

February 26, 2017 a world of progress, letters, media, progressive living, progressive media center No comments

Kitty Schaller holds my favorite sign from Saturday’s rally.

I was ready to make a very public exit from the Democratic party if Tom Perez won the chairmanship, but other events Saturday raised my hopes for the party.

It started with the precinct cluster meetings in the morning. I’m vice-chair of my precinct (45.1 in Buncombe County, NC), and in previous years, the chair, John Parker, and I had to scramble to get five people out to a meeting so we could have a quorum. We had to make calls and get people to the meetings so our precinct wouldn’t lose our “organized” status.

“Can you just stop by for a half hour while we vote on resolutions and elect officers?” we begged. We were able to keep organized, but barely.

Yesterday, instead of begging for people to show up, we had 16 people, several of whom were young and progressive. The others were from a retirement community, and I was afraid they might be conservative Democrats like the ones who killed several progressive resolutions last year, but they were old-style progressives who decided to become active again so we could take our party back from pro-corporate influences.

Last year a conservative banker convinced people to vote against a resolution calling for re-regulation of the banks and against a resolution calling for a Constitutional amendment to overturn Citizens United. He wouldn’t stop talking until he had the votes to defeat these two resolutions.

This year, the banker was nowhere to be seen and both resolutions passed unanimously, along with resolutions calling for an immediate raise in the minimum wage to $15, plus one calling for a single-payer health care system. In all, we passed nearly a dozen progressive resolutions, all unanimously.

I wrote two resolutions — the ones calling for the $15 minimum wage and Medicare for all — and most of the precincts passed them without amendments. One precinct leader asked if the minimum wage resolution could be amended to phase in the $15 over three to five years. I told them no. If you’re making $7.25 an hour, five years without a living wage is not an option. The raise is needed now, and in five years, inflation adjustments should have it up to about $20. People need to be able to feed, clothe and shelter their families NOW, not in five years.

“Well, these a pretty conservative people,” the precinct chair said.

“Those are the very people we need to outnumber to take the party back,” I said. “Go ahead and write your own resolution, but mine stays as is.”

These new party activists were Bernie Sanders supporters, determined to move the Democratic Party back to its FDR progressivism, back to the days when LBJ signed the Civil Rights and Voting Rights acts. They were inspired by the organization, Our Revolution, which is comprised of progressive fighters.

I left the precinct meeting with renewed faith that we can do this.

From there, I went to speak at an Our Revolution rally downtown. We had 500 people turn out to call for improvements to our health care system, from support of keeping and improving the ACA, to a public option in the marketplace, to single-payer.

I told my son’s story and reminded people that 45,000 Americans died the same way every year before the ACA took effect. We’re still losing 15,000 to 20,000 in states that haven’t expanded Medicaid.

What I saw yesterday was a determination to take the Democratic Party left again.

When it was announced that Tom Perez won the party chair election, we were encouraged by the fact that the election was close and that our candidate, Keith Ellison, is now the vice-chair and that Perez has vowed to work closely with him.

I am encouraged. We have to remember that the Republican right wing has worked since the 1960s to achieve what it has, and that in one election cycle, we progressives have made remarkable progress.

So, let’s follow the Indivisible playbook. Let’s take this nation back in the 2018 elections, despite gerrymandering, despite voter suppression laws. We are the majority. If we work for this, and most importantly, if we vote, we will not fail.

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