Thank you to the GOP members who voted no

Susan Collins of Maine and Lisa Murkowski of Alaska voted no. John McCain joined them. Photo by Getty Images.

 

John McCain had a choice. He could play politics and be the darling of the right wing, or he could do the right thing.

The future of the Affordable Care Act lay in his hands.

Thing is, this likely was to be his last hurrah.

Diagnosed with an aggressive form of brain cancer, he likely has little time left to him. I was afraid the irony might be lost on him — a politician who had fought against the ACA, getting the best medical care available to anyone and able to allow tens of millions of people to keep, or lose, lifesaving access to health care.

Would be make the connection? Would he see the importance of access to care for everyone, or would he continue to play politics with people’s lives?

I was truly afraid he would stand on the wrong side of history.

He chose to be on the moral side of history.

But the beautiful story in all of this is the two Republican women who stood steadfast in the face of derision and threats.

Susan Collins of Maine and Lisa Murkowski of Alaska never wavered in their opposition to the theft of access to care for tens of millions of Americans.

When Murkowski was threatened with official punishment in the form of retaliatory action against her constituents, she shut down her committee’s hearings on appointments to the Department of the Interior, which was the source of the threats against her.

Sen. Capito caved. I don’t know what the enticement — or the threat — was that changed her vote, but Collins and Murkowski stood firm.

I took some heat this morning because I mentioned McCain before the women in a Facebook post. I call bullshit on that.

McCain walked the farthest in his position. Maybe it was because he wants to see the whole law repealed; maybe it was because the stark reality of his own mortality has humbled him. Whatever the reason, he has saved access to health care for tens of millions of Americans.

We knew we had the votes of Murkowski and Collins; McCain’s was the miracle vote.

And while we’re talking about heroes, Sen. Mazie Hirono of Hawaii also has cancer — stage 4 kidney cancer. She also traveled to Washington to vote, making her every bit as heroic as McCain. The media haven’t picked up on it they way they did McCain, so we all need to thank her for her heroic effort.

I have written thank-you notes to all four senators.

But we have won just one battle. The occupant of the White House will not let this go. He has promised to attack it and kill it with a thousand cuts. We are not out of the woods.

So, let’s take some time to breathe this morning, but tomorrow we have to resume the fight. This is not over until every human being in the United States has full access to health care.

 

I can’t sit down

 

Marching to the Capitol with a cardboard “coffin” on Wednesday morning. I was arrested for chanting, “Kill the bill!” Photo by Religion News

 

I have been arrested again, this time for trying to speak truth to US senators.

On Tuesday, 32 of us went into the Senate gallery to watch the vote on opening “debate” on a bill that could rob 50 million Americans of access to health care by 2026.

I was hauled out of the gallery before the action began because someone noticed I had a 5×7 photo of my late son. I just thought he might like to see the circus. Honestly, I wanted to hold him up for John McCain and Mitch McConnell to see.

I spoke before we marched to the Capitol from a church a quarter mile away, begging senators to be truly pro-life and drop their effort to murder tens of thousands of Americans each year by taking away their access to health care. A portion of my remarks was picked up by Now This and the video is circulating on Facebook. I’ll be honest, I’m a little tickled by that. The more people who know about my son, the better. We have to put the faces of real people suffering the real consequences of these people’s actions.

I know some people just stumbled over the word, “murder.”  It seems so harsh. But there is no other word to describe an action that you know will result in the deaths of tens of thousands of innocent people.

So, we marched, then we stood in line for two hours waiting to get into the gallery. I got a little star struck watching Al Franken walk in. I had listened to a podcast of him being interviewed by Larry Wilmore on my drive up to Washington. He’s so smart and so funny. He’s shorter than I thought. I looked over at Mitch McConnell and remarked to the woman next to me that I think he looks even more turtle-like in person.

But before John McCain walked in and voted to open “debate” on a bill that no one has seen, I was hauled out of the gallery for having a photo of my late son. That’s right, I’m a dangerous subversive because I carried a photo.

As I was speaking to a cop, who was taking down my personal information, I heard the chanting start. Now, I don’t know if I was about to be arrested or simply banned from seeing the Senate at “work,” but I looked at the officer and took a deep breath.

The officer, whose name is Michael, and who is the same age my son was when he got sick, said, “Don’t do it.”

“I have to, ” I said. I turned my back to him and started chanting. Then with him behind me, I walked over to the line of people being taken out of the gallery.

It was a little like “Star Trek IV: The Voyage Home,” where Spock, who is not charged with a crime, walks up to stand with Kirk and the others, saying, “I stand with my shipmates.”  I could almost hear my son laughing as that thought entered my head.

I kept chanting as Officer Michael caught up with me and held my elbow. They cuffed us behind our backs as we waited for the elevator, and my nose started itching immediately.

They took us to the building’s garage, where we were searched. As they took our jewelry, wallets, even the tissues I had tucked into my pocket, we sang freedom songs and hymns.

We sang in the paddy wagon, and we sang in the converted garage they had set up to process us. We sang “This Little Light of Mine” and “Hold On,” “Amazing Grace” and “We Shall Not be Moved.” A rabbi among us taught us a Hebrew song.

The officers were all respectful and kind. Several of them even joked with us. One admitted quietly to me that he respected and admired us. Another whispered to me she was honored to be in our presence. They had several coolers filled with cold water and a half dozen big floor fans to keep the air moving in the garage to keep us comfortable. They took off the cuffs and cuffed everyone in front, which is a whole lot more comfortable. We sat on cafeteria chairs and chatted.

There were a few from the North Carolina Moral Monday Movement, including Rev. Rob Stephens and Jennifer “Jeff” Ginsburg, a hospice nurse who was arrested with me in Raleigh on May 30. Jeff, by the way, runs a small box turtle rescue operation, which makes her an expert on turtles. She agreed that McConnell is an evil turtle.

Others, including Dr. Margaret Flowers and Rev. Traci Blackmon, walked with us and sat with us, but didn’t participate in the action because of their previous arrests.

We were supposed to be given a $50 fine and released, but we were charged with disrupting the Senate, which is a slightly more serious charge and means we all have to go back for a court date.

If they think that intimidates me, they should think again. I’m fighting for the lives of every American. I’m fighting for health care as a human right. This fight is way bigger than one bereaved old woman.

After we were released, we were all hungry enough to be grateful for the cold pizza that was waiting for us across the street from where we were being held.

We called an Uber car to take us back to the church for the belongings we left there. The driver was a Muslim man from Afghanistan, who, when he found out who we were, refused to accept payment from us.

“I don’t take money from heroes,” he said.

After I gathered my things and started walking to the Metro station near the Capitol, I saw Sen. Lindsay Graham in the crosswalk. I approached and stuck out my hand.

“Senator Graham,” I said, “I’m from North Carolina.”

“Then we’re neighbors,” he said, smiling.

“I know you’re in a hurry, but I need to speak to you for just a moment.” I pulled out my photo of Mike. “This is my son who died from lack of access to health care. He was a good man, a hard worker, a community volunteer and the light of my life.”

He looked at the photo, somewhat shocked at being accosted, I think.

“”Please, please, sir, I beg you to think about the lives that will be lost, the families who will grieve, before you vote on any health care bill.”

“I will,” he said as he handed the photo back to me.

He voted against the first bill that night. I like to think he saw Mike in his head, but then he voted yes on the second bill.

I am exhausted. I am worried about my own health — I have a bunch of kidney stones — but I have access to decent care and I have to fight for those who do not.

I slept well last night, knowing I have done the right thing and that I will continue to fight these murderers. As long as my heart beats, I will continue this fight. This isn’t for or about me. This is about being truly pro-life. This is about loving my neighbor.

I’m not a hero, I’m just a person following my conscience and my faith. I know how it feels to lose a child, and I live in fear of losing my only surviving son, of outliving both of my children because of the greed of a few powerful men. This is what moves me to action.

I am standing for the lives of my fellow human beings.

I can’t sit down.

 

 

The irony of McCain’s cancer diagnosis

Photo by NBC News.

Not that many people get this, but is is more than a little ironic that John McCain’s brain tumor postponed the vote to take away access to health care for millions of Americans.

McCain was a sure “yes” vote on the “repeal and replace” of the Affordable Care Act that Sen. Mitch McConnell was pushing. I don’t know that this diagnosis will change McCain’s mind on that vote.

Still, I would not wish this on him and I am grateful that he has access to the care he will need if he is to beat this.

My son never had that chance.

I’m being criticized today for saying this because McCain is a mean-spirited man who has fallen in willingly with thugs and thieves. He was set to help take away access to health care for 23 million Americans.

That is the aiding and abetting of murder.

To me, that doesn’t matter right now because when I say everyone deserves access to quality health care, I mean exactly that.

No one deserves to die the way my son did. No one. Period.

It would be the height of hypocrisy to stand up in public and say no one deserves to die the way my son did and then turn around and wish it on someone else, even if that someone is not a good person.

Conservatives say they don’t want universal health care because some people just want a handout.

That’s bullshit.

In my 30 years as a reporter covering social justice issues and in my nine years of health care advocacy work, I have not met anyone who just wants a handout.

My son wanted health care. He worked hard and he went to school and he was a community volunteer who gave selflessly of himself to help others.

And don’t tell me, “OK, your son deserved to live, but some people are lazy …” Who the hell are you to decide who deserves to live? Where do you get off condemning someone to die because you deem them too lazy, or too mean?

No one deserves to go without access to health care. No one. Period, end of discussion.

I don’t know John McCain personally, and I am not going to judge him other than to say he has done and said some incredibly mean-spirited things. Still, he does deserve health care.

I am grateful that his family doesn’t have to watch him die from medical neglect. Having watched my son die from lack of access to care, I am steadfast in my desire to see no one else die that way.

 

 

 

 

They’re not done trying to steal our health care

Do you really think this man and his partners in crime are going to give up and stop trying to take away our access to health care?

 

Everyone seems in a celebratory mood this morning.

Stop it.

Stop it now.

Mitch McConnell announced the latest version of Trumpcare is dead, and that saves Medicaid — for now.

But he also announced he will try a “clean repeal,” meaning the ACA would go away in two years. It would leave up to 33 million people without insurance. Thirty-three million. That’s how many people have gained insurance under the Affordable Care Act.

When my son died on April 1, 2008, I started fighting for reform. In 2009, I left my job as a newspaper reporter — I volunteered to be laid off — so I could devote all my time to the effort.

I wasn’t thrilled with the Affordable Care Act, but it was a step in the right direction. It would have forced insurance companies to cover my son and he likely would still be alive — that is, if it had passed in 2005 instead of 2010.

As it is, my friend, Kelly, who worked with me in the fight to pass the ACA, will die if this is repealed. Kelly has lived with cancer for years, and if the ACA goes away, she will lose her insurance and her access to the care she needs. She will die.

Middle-aged people with diabetes, asthma, high blood pressure, high cholesterol, depression and any number of other illnesses, will be left to die. Cancers that are treatable when diagnosed early will be diagnosed too late to save people’s lives — exactly what happened to my son.

Think about it: if you make $35,000 a year and you have a policy with a $10,000 deductible and high co-pays, you won’t be able to afford care unless you sell your house — if you own a house and can sell it in time to save your life. That’s what the Senate version of “replace” had in it, a two-tiered insurance system that would give people with a lot of money good insurance while the rest of us would be able to get only junk plans.

Before the ACA, some 45,000 Americans died every year from lack of access to care. That’s one every 12 minutes.

Under the ACA, an estimated 33 million more Americans are covered than were before. Most of the 12 to 15 million without coverage now are low-income people in states that have so far refused to expand Medicaid. That’s also where most of the approximately 20,000 who die every year from lack of coverage live.

So, we’re saving 25,000 lives every year with the ACA, but the powers in Washington want it repealed because — well, why?

The ACA is not failing. Insurance companies are not going broke. In fact, a federal court has found that United Health Care was not losing the money it claimed it was losing when it pulled out of the ACA marketplaces.

What’s happening is that a group of ultra-wealthy, ultra-conservative thugs want more money. They want more tax breaks for the rich. They want less regulation. And they don’t give a damn about you and me. They don’t care about the opioid addiction epidemic — in fact, they deliberately caused it to make money.

If you don’t remember, Purdue Pharmaceuticals began marketing synthetic opiates in about 1996. They told doctors and others that this new synthetic wasn’t addictive, although they knew damn well it is. Before long, doctors were prescribing it for things as simple as a tooth extraction — things where an over-the-counter painkiller would do.

They now ship enough painkillers into West Virginia alone to kill everyone in the state.

And you think these murderers are going to give up now because they can’t get a “replacement” through for the ACA?

Think again.

Their disdain for us runs so deep that they won’t give up. Tax cuts are far more important to them than our lives. They want that money.

They’re talking about passing a repeal that would take effect in two years — after the next election so we we can be distracted easily, since we’ll still have our insurance at election time. They can keep promising a replacement that they have no intention of passing.

Please remember that they’ve had seven years to come up with a replacement and they showed us already that they have nothing.

If they genuinely cared a whit for us, they would have had some idea how to do this. But the ACA was a conservative idea, generated by a conservative think tank (The Heritage Foundation) and implemented by a conservative governor (Mitt Romney) in a single state. The Democrats pushed it because they thought conservatives might be willing to go with their own idea.

They weren’t.

Obama offered a huge olive branch with the ACA, and he put icing on the cake by taking single-payer off the table at the outset. Had we started discussions there, we might have been able to get a public option and give insurance companies some competition.

But we started negotiations in the center and landed right of center, and they still want to get rid of it.

That alone should tell you that they will stop at nothing to take away our health care. If it is at all possible, they will do it. And they won’t stop trying.

Don’t let up now. Don’t stop calling, writing, e-mailing, faxing … Our lives depend on it.

 

 

 

Telling the story, over and over

Speaking at a town hall to which my congressman was invited, but chose not to attend.

Three times on Friday and Saturday, I told the story of the death of my son.

It never gets easier. It’s emotionally exhausting, yet I work to find places to speak and people willing to listen because his is the face of the injustice inherent in our so-called health care system.

I stood alone outside the federal office building in Asheville Friday at noon as people at the stoplight honked their approval (this was the first time I’ve done this that no one flipped me off or said rude things). Then I packed up and went to a “listening” session sponsored by the NC Department of Health and Human Services, which is trying to put the best face possible on the legislature’s planned dismantling of Medicaid here in North Carolina.

The right-wing agenda of the legislature has been the shredding of our social safety net ever since they took power in 2010. They have refused to even consider expanding Medicaid and have chosen instead to privatize it, to farm it out to their corporate friends, who will line their pockets with some of the limited funds meant to help people in need.

I listened to a woman who is blind talk about losing her job, and with it, her access to health care, because North Carolina refuses to allow access to health care to people who live below the federal poverty level.

I listened to another woman talk about trying to recover from a horrible accident while having no access to care because, even though she has obvious disabilities related to the accident, she has been denied both Medicaid and disability. I heard her vow, tearfully, to continue her fight.

Like these two women, my son was not lazy, nor was he to blame in any way for his condition. He didn’t choose to have a birth defect that left him vulnerable to colon cancer. He didn’t choose not to buy insurance — that was decided for him by greedy corporate hacks who saw no profit in him. In fact, no one saw a profit in him until he had stage 3 colon cancer and needed chemotherapy. That’s when he became eligible for Medicaid (but only after he left his wife), and the drug companies collected more than a half million dollars while my son waited for approval for disability. He would not live to see a penny of it — his approval took 37 months and he was dead nine days when his first check arrived.

This state destroyed a decent mental health system a dozen years ago when it privatized services. I know because I was the one reporter in the state who covered it from the beginning. I watched as people who needed help were denied services. I watched as the state made change after change after change to the system, never allowing it to stabilize. I watched as people died.

When I returned to work after the death of my son, I found an e-mail telling me about the deaths of three young men who died within weeks after being released from state psychiatric hospitals without follow-up plans. One of them was released and dropped off at a homeless shelter that had been closed for months. He landed in a fleabag motel, where, in utter despair, he took his own life.

No policymakers cared until the day the story ran. Then they announced a policy change: No one would be released from a state psychiatric hospital without a follow-up appointment with a psychiatrist and enough medication to carry them over to that appointment.

It took more than the three deaths — it took public outrage over those three deaths — to change policy.

Stories are powerful. Stories matter. That’s why I continue to tell my son’s story.

I told his story again on Saturday, at a Town Hall to which Mark Meadows, our member of Congress, was invited, but to which he didn’t come.

I talked about Mike’s experience not getting what he needed, even from the emergency room. I explained that the ER only has to stabilize patients, not look for or address the root cause.

Two women came up to me after I spoke and told me I was wrong. I explained again how the ER only has to stabilize patients and they insisted what my son got was treatment.

“No, he didn’t,” I said. “He left the ER with the wrong diagnosis, the wrong medications and a big bill three times. What he needed was a diagnosis of the malignant tumor that was blocking his colon.”

“I’ve studied this,” one of them said to me.

“I’ve read the laws and written about it for three decades,” I told her. “You are wrong.”

She tried again to tell me I was wrong, and I just turned and walked away. Some people refuse to hear the truth and I can’t waste my time trying to get through to them.

After that, as I stood fuming about how ignorant people can be, a woman walked up to me and said, “You’re probably going to think I’m crazy, but I have a message from your son. He’s really, really proud of you. He stands behind you as you speak, and he’s smiling.”

I decided to not think she’s crazy. I need to feel his presence whenever I can. I need for him to not be completely gone from me.

So, I tell his story. In his memory, I work for access to health care for every human being, and I won’t stop until we’re done.

Murder. That’s what ‘repeal and replace’ really is.

“You die and you die and you die …”

The House will vote today on whether to murder tens of thousands of innocent Americans.

While you might not think the repeal of the Affordable Care Act and a replacement that takes health insurance away from some 24 million Americans is murder, but it is the premeditated removal of access to health care.

In my book, that’s murder, just as the death of my son was.

My son didn’t have to die. He shouldn’t have died. But he was denied insurance because a birth defect was a pre-existing condition. Because he didn’t have insurance and he didn’t have thousands of dollars in cash, he was denied care.

Think about this for a second.

My son was denied care when he got sick.

He was turned away, even though he was in pain and obviously sick because he didn’t have insurance.

Michael, age 3, playing with his food.

He committed no crime, but he was handed the death penalty for being born with a birth defect.

Yes, he went to the emergency room. But the emergency room only has to stabilize you, so my son was given pain pills and a laxative when the problem was a malignant tumor blocking his colon.

He went to the emergency room three times and got no help.

He was denied a colonoscopy for three years running — even though he’d already had pre-cancerous polyps removed by the time he was 25.

Yes, Republicans, he was working when he got sick, but he got too sick to work — try reporting for a shift waiting tables when you have stage 3 cancer.

And if you think you’re safe because you have employer insurance, this new law allows states to remove the protections of mandated coverage from your plan as well.

That’s right, you could lose maternity coverage, addiction treatment, mental health coverage. And while you may not want maternity coverage because you’re a man, your wife or daughter could lose a child because of lack of access to maternity care. In fact, you could lose your wife or daughter.

But go ahead, laugh and say, “like I need maternity coverage, chortle, chortle.” Maybe it’ll be a little less funny when your wife or daughter dies from lack of access to care.

And if you think they don;t know what they’re doing, consider this: They kept all the protections of the Affordable Care Act for themselves in this bill. We can die, but they won’t because they wrote the law to protect themselves and their families.

These murdering thugs belong in  jail, not in Congress.

But because they’ve been able to convince enough Americans to vote against their own interests, because they’ve been able to gerrymander their districts to prevent a Democratic majority, they get to murder tens of thousands of Americans.

If the ACA goes, I lose coverage because I have asthma.

If the ACA goes, 22 million Americans are in the same situation I am.

Are you one of them?

I have tried to appeal to my congressman, Mark Meadows — a man who claims to be “pro-life” and “Christian.” He is neither. I have called, written, e-mailed and faxed appeals to him, trying to appeal to his better nature.

As it turns out, Mark Meadows has no better nature. Nor do Robert Pittinger, Patrick McHenry or Paul Ryan. These are not reasonable people. These are criminals who belong behind bars for their part in this heinous crime.

You can say I’m a little over the top with all of this, but if you lose a loved one to this mess, you’ll understand.

If you don’t have health insurance, you are not a criminal, as much as those in power would paint you as such. Why else would their first question on hearing my son’s story be, “Was he working?”

Perhaps they should have to watch their children die. Perhaps that’s the only thing that will work to change their minds.

I really do hope there is a Judgment Day. I want to be there when they’re condemned. I want to see it happen.

 

 

Don’t celebrate too hard

These thugs may indeed have the last laugh. They can still destroy the ACA. We won a small battle, that’s all.

 

It looks like Trumpcare is dead in the water.

It’s fine to take a little time to breathe a sigh of relief, but this fight is far from over.

The thugs who want to destroy the Affordable Care Act are still busy wreaking their havoc.

Already, the occupant of the White House has directed the IRS not to enforce the mandate to buy insurance. That means the law will fail as young and healthy people bail out because they won’t face consequences for doing so, and that alone is enough.

Sure, the thugs didn’t get their tax breaks for the wealthiest Americans, but they have plenty of time to do that.

Even if 45 is impeached for his collusion with the Russians, and he’s removed from office, we have to deal with Pence, who is every bit as dangerous. If it turns out Pence was involved in the Russian scheme and he goes, too, that leaves us with the sociopathic Paul Ryan.

Sociopaths and psychopaths seem normal. They appear healthy, but they have no empathy. They can only feel what affects them directly. That’s what made Ryan able to have his drunken college frat boy fantasies about pulling the rug out from under people in need. And his peers consider him to be the smart one. This brain malfunction is how he can call himself a “Christian” but follow none of Christ’s teachings. Because Christ never actually said, “I got mine, get your own.”

The Republicans who were going to vote against Trumpcare, members of the so-called Freedom Caucus, were doing so because it didn’t go far enough. It allowed poor people access to addiction treatment and mental health care. Apparently, my representative, Mark Meadows, head of the so-called Freedom Caucus, thinks more people should die from lack of access to care, not fewer.

They still want to change Medicaid to a block-grant program, which would offer set amounts to the states, and those amounts won’t grow even as the need does. That means fewer people will be served and more will die.

They still want to close women’s health clinics, which for many low-income women are their only lifeline to health care. Without these clinics, the women who use them will have no access to birth control, to mammograms, Pap smears and other diagnostic tests. They won’t have access to safe abortions, and if you really want women to bear every child that’s conceived, shouldn’t you want them to have access to care so those babies will survive? Apparently not.

This crowd also wants to de-fund WIC, which provides pregnant and nursing mothers and their babies the nutrition they need. It is one of the most efficient and successful of all the government programs, but these thugs want it gone.

And, then there’s Meals on Wheels, which 45 de-funds in his budget. Yes, it gets most of its money from private donations, but it still needs the money it gets from the government.

These thugs have an agenda. One tiny piece of it has been thwarted, and we can and should be happy about that, but they have any number of means to achieve their goals. They are not done. We can not claim victory until they are gone.

So, stay active. Register people to vote and then help them get to the polls. Run for office yourself if you can — any office, including city council or school board.

And above all, stay woke. That means pay attention to what’s going on. The thugs are not done.

 

Nine years ago today

This is my son, Mike, a kind and wonderful young man. Nine years ago today, I brought him home to die.

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

In my heart, I feel as though it could have been yesterday.

I remember everything about the day because it’s etched on my heart as the day his impending death became real.

We had coffee in the living room of his apartment after his roommate and best friend, James, left for work. From across the room, Mike looked up at me and said, “I’m ready for this to be over.”

I was not ready. I would never be ready. I’m still not ready to be without him.

We had an appointment for his third chemo infusion, hoping to give him a few more weeks or months.

But he hadn’t gained any weight at the last appointment, and his doctor had said he needed to put on two pounds. I had gone to the Duke Chapel to pray for those two pounds. It didn’t seem like too much to ask. Two pounds.

But it wasn’t to be. We drove from Cary to Durham to the cancer center at Duke University Medical Center. We passed by Mangum Street and he laughed and asked what I though man gum was.

“I can’t help it,” he said. “I think that every time I pass that street.”

We got to the clinic and he stepped on the scale. He had lost another pound.

“I tried!” he said. “I really tried!”

I’ll never forget the look on his face — frustration, disappointment, disbelief.

Dr. Herb Hurwitz came in and told us there was nothing more he could do. His eyes filled with tears as he said, “You’re a good person, Mike. You don’t deserve what’s happening to you.”

I remember thinking it would have been nice if Dr. Patrick Hammen in Savannah had felt that way. Perhaps if he had, Mike and I wouldn’t he hearing these words from Dr. Hurwitz now.

But Hammen had given up on Mike before he even started treatment for his recurrence — which wouldn’t have happened if Hammen had been willing to take payments instead of demanding cash up front for a colonoscopy three and four years earlier.

Hammen had been very matter-of-fact when he told Mike the cancer was back and a cure was unlikely, and he never came back to check on Mike during his nine more days in the hospital.

And here, Dr. Hurwitz was weeping as he told us there was nothing more left to do and that Mike should come home with me and enjoy what time he had left.

As we were leaving the clinic, I was pushing Mike in a wheelchair and he looked up at me.

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

“I hope it’s more than that,” I said.

But it was not.

We called James and Janet and they both met us at the apartment. They had packed up a few things they knew Mike would want, including his gaming computer, his game console and games, a few books and all his plaid flannel pajama bottoms and T-shirts, underwear and ostomy supplies. It all fit in the back of my Honda CRV.

At that point, these few things were about all he owned, except for a massive antique desk, which would go to Janet.

James and Janet would come out to Asheville the following day; Mike and I would do the four-hour trip alone, stopping at an outlet store about halfway home so I could get a memory foam pillow for his bony butt. I think it was as much an excuse for him to have a cigarette as any soreness in his backside, but I was willing to indulge him.

He weighed about 102 pounds at this point, but he would lose more since his body had stopped absorbing any food.

For the next two weeks, I would share him with friends and family from as far away as New York and New England, from Savannah and Cary, and from Asheville. All of us tried to soak up as much of his presence, wisdom, humor and love as we could. We knew it would have to last us a lifetime.

Nine years ago today, he came home to die. I would have given my own life to spare his, but it was not to be, and the pain of losing him has not abated. I was so unwilling to imagine life beyond his death that I convinced myself my heart would stop when his did. It didn’t, of course, and all I know to do now is to fight for access to health care for everyone because no one should have to go through what my family has endured.

On the day he died, some 45,000 Americans were dying every year from lack of access to care. Things are somewhat better now because more than 20 million people have access to care than had it then, thanks to the Affordable Care Act.

But the occupant of the White House, the Speaker of the House and other Republican politicians want to go back to that. Perhaps if they had to watch their own children die the way I had to, perhaps if they had to live with the unspeakable pain I do, they would change their minds.

But I wouldn’t wish that on anyone — even on them.

Nine years ago today, I brought my child home to die.

We would have two more weeks with him.

 

 

Holding out hope for the party

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.

An open letter to my anti-life members of Congress

Me and Mike on his wedding day.

Dear Sen. Burr, Sen. Tillis and Rep. Meadows:

You know me.

You know me because for the last nine years I have hounded you and others about the importance of access to health care.

I have hounded you because nine years ago yesterday, I got a call that every parent dreads.

It was about 9:45 a.m., and I was on my way to work.

“Mom,” he said, “the cancer’s back. There’s nothing they can do. I might have a few weeks, maybe a few months.”

It was as though I had been punched in the chest, full force, by a very strong man.

“How do I begin to say goodbye to everyone?” he asked.

The next six weeks are etched on my heart, burned into it like a cattleman’s brand.

I am forced to relive the death of my child because he couldn’t get access to health care.

He was uninsured, not because he was lazy — he was as hard a worker as anyone I’ve ever known. He was a full-time student, working in a restaurant and volunteering with his 12-step group to help other people get and stay sober.

But a birth defect — one that left him vulnerable to colon cancer — was a pre-existing condition, so no insurance company would sell him a policy. Without insurance, he was unable to get the cancer screenings he needed, and of course, he developed cancer.

He went to the Emergency Room when he got sick. He went three times and left with the wrong diagnoses, the wrong medicines and a bill because the ER only has to stabilize patients. I’ll bet you know that when you tell people they have access to care there when they really don’t. My son was given laxatives and pain pills when the problem was a malignant tumor blocking his colon.

By the time anyone did anything for him, he was vomiting fecal matter. Can you imagine that?

No, I guess not. You and your families have access to care whenever you need it.

By the time he got any care, it was too late to save his life. He was forced to leave his wife to get Medicaid. It took 37 months for his disability to be approved — he was dead nine days before his first check came.

Michael was lucky because the many people who loved him did all we could to make sure he had a place to live and food and clothing — and even a few little luxuries like a cell phone.

But all the love and support he had weren’t enough to save his life — all because insurance companies wanted to protect their profits.

My son died on April 1, 2008. I sat beside him, his hand in mine, as he breathed his last.

I had believed I would die when he did. I couldn’t imagine that my heart would continue to beat after his stopped.

But there I was, heart beating, lungs inhaling and exhaling. I was too devastated to cry.

Have you ever had that happen? Something so horrible that you can’t even cry because you’re so paralyzed? It’s not something I would wish on anyone — even you.

So I decided I would work to make sure everyone — not just every citizen, but every human being — gets access to health care.

We managed to make some progress with the Affordable Care Act. Some 32 million Americans have gained access, saving tens of thousands of lives every year, and now you want to repeal that law.

And you still call yourselves “pro-life,” and “Christian.” You are neither, and I pray you will face judgment for your crimes.

Since it’s unlikely you’ll ever lose a child the way I did, let me tell you what it’s like.

I would give my own life to have him back in the world. I so miss those late-night phone calls that began with, “Hi Mom, I knew you’d still be up.”

I miss the calls that started, “When are people going to learn to fucking drive?” when he was stuck in traffic.

I miss having him in the kitchen, eating an entire loaf of fresh-baked bread with the proclamation, “The only thing wrong with this bread is that it’s not at my house!”

I miss watching cooking shows with him, punctuated with, “Oh, you know what?” which was followed by an idea for a recipe. We both wrote a lot of recipes. I had hoped we would write a cookbook together someday.

I miss slapping his hand away from the turkey and stuffing on Thanksgiving, and I miss him emptying the entire gravy boat onto his plate so I had to refill it for the rest of us.

I miss how much he loved his wife and his nieces and nephew, his brother, his many, many friends, and me.

I cry most days because the pain of losing him hasn’t gotten any better. On our shared birthday, I go with a friend to where we scattered his ashes and I sing Happy Birthday to me, while my friend tries to drown me out singing it to him. I miss that Michael and I used to sing it that way.

See, I told him he could have the birthday when I was done with it. It was a joke on each of the 33 birthdays he had before we were robbed of his life by a broken health care policy.

Oh, and I almost forgot to mention that I was advised to have an abortion when I was pregnant with him, but I CHOSE not to. I am much more pro-life than you are because I believe life is sacred even after it exits the birth canal.

Now you’re talking about repealing the ACA, which would condemn tens of thousands of Americans to slow and painful deaths. It would condemn tens of thousands of families to suffer the same loss mine has.

But you don’t care about that because your friends profit so much more when people suffer the way my child did.

I have a fantasy: You know the passage in the Gospel of Matthew, where Jesus sorts the people in to goats on his left and lambs on his right?

I have a fantasy of you walking in and confidently sitting among the lambs, only to have Jesus say, “Excuse me, you’re in the wrong seats. You belong over there on the left. I was sick and you told me I was lazy because I didn’t have a job with insurance. I was hungry and you voted to take away my food stamps and then you voted to keep my wages too low to be able to afford decent food and shelter.”

Then you say, “But we never saw you sick or hungry …”

This is where Jesus cuts you off and points to my son and the tens of thousands of others like him.

“Whatever you did to them, you did also to me.”

Sincerely,
Your constituent, Leslie Boyd

 

 

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