Let’s all raise our voices

North Carolina still won’t expand Medicaid, even though people die every day here from lack of access to health care. Our legislators are playing political games while they have all the care they need and innocent others die.

I haven’t been writing much lately. I think it’s mostly because I’m frustrated that, 14 years after the death of my son from lack of access to health care, I still can’t make legislators care enough to fix this.

I have held rallies, I have spoken in public at every opportunity to explain how we can fix this. I have been arrrested six times trying to talk to legislators. I’ve never been violent, not have I ever condoned violence. Yet the violence of allowing people to suffer and die because of corporate greed not only continues, but is protected.

But I made a promise to my late son to work on this every day. I’ve been busy organizing, registering voters, speaking out … but it’s gotten really hard to just sit down and write, to tell other people’s stories, and then see the same bad actors getting elected again and again, to see things get worse instead of better.

I was naive enough to believe the Affordable Care Act would improve things but it turned out to be just another way to drive customers to Big Insurance, where customers are required to pay thoudsands of dollars before their insurance company has to shell out a dime.

I used to say the ACA would have saved my son’s life, but that’s no longer the case. An insurance policy no longer offers access to care. Deductoibles soar to $3,000 and above for an infdividual, which means if you don’t have $3,000, you don’t have access to care. This is at a time when nearly half of Americans say they would have to borrow money to pay an emergency expense of $400.

In other words, 14 1/2 years of activism has resulted in nothing but further degredation of the “system.” I know it’s hubris to hope one’s work will result in something positive, but to watch things get worse while tens of thousands die needlessly is downright depressing.

I’ve let it get to me, and it’s time to stop wallowing and start shouting again.

I’m busy registering people to vote right now because this is an election we can not lose. Period. Nothing good will happen on any front if we allow the corporate elite to hold power.

If you’re not registered to vote, do it NOW. And then be sure to vote. If we lose this one, we’re toast.

And if you think I’m too radical, ask yourself how the unnecessary death of your child might affect your outlook.

14 years and it’s still no better

My Mike, clowning around on Jekyll Island. The gorilla is still there, and I have photos of other family members with it.

This day, 14 years ago, started out with my son looking up at me and saying, “I’m ready for this to be over.”

“Say the word, I said. “If you don’t want to do chemo anymore, just say the word.”

I was not ready for this to be over because I knew when this was over, he would be gone and I could never be ready for that. But we had been fighting for three years — actually for much longer than that because we couldn’t get anyone to care for him for years before that because no one would sell him insurance, so he had no access to the care he needed.

“No, I want to keep trying,” he said.

So, I got him in the car and we headed for Duke. As always, we headed east on I-40 and north on 146, and as we got to Durham, we passed the Mangum Street exit. He didn’t disappoint.

“Man gum,” he said. “I don’t know what that is and I don’t think I want to.”

Ask anyone who ever took him to a chemo appointment. He said it every time he passed that exit, and then laughed at his joke.

We thought he might have another few months. Chemo every two weeks might keep the cancer at bay for a short time. Every day — every moment — was precious.

But when we got to the clinic and he stepped on the scale, he had lost another two pounds. He was hovering around 102 pounds. The look on his face said it all. He really wasn’t ready to give up, but the chemo wasn’t helping and there were no more options. I would be bringing him home to die.

He thought maybe he could wait a few days, but the doctor told him it was time. He choked back tears as he said. “You don’t deserve this, Mike. You’re a good person and you don’t deserve this.”

On the way back to the car, Mike looked at me and said, “So, what do you think I have left, maybe two weeks?”

“I hope it’s more than that,” I said.

But it would not be.

His roommate and best friend, James, had cared for him, changing his dressings, making sure he was comfortable, trying to get food into him. But James feared coming home and finding he had died, and he didn’t think he could cope with that. We decided to bring Mike home and call hospice, and James would come to Asheville to be with us. Janet came too because even though they’d been forced to split so he could get Medicaid, they still loved each other.

We got him settled in and had a Hospice intake nurse scheduled for the next morning. James and Janet were just a couple hours behind us with the rest of Mike’s few belongings.

I remember every detail of this day in 2008 because I was very deliberate about remembering it. Time was so short and I wanted to savor every moment I had left with him.

On this day 14 years ago, we would have 14 days left with him. I couldn’t imagine life without him, and in some ways, I still can’t. Everything reminds me of him. I had hoped these anniversaries might get easier, but they haven’t. In fact, it gets harder every year as the echo of his laugh fades and his scent is erased from the leather jacket he wore everywhere.

And then I think about the million or so American families who have endured this same injustice from lack of access to health care and I’m furious that we won’t fix this. It’s not that we can’t, it’s that we won’t. It’s a choice to deny millions of people access to health care. It’s a policy choice to turn the other way and pretend we’re a decent, moral society. We are not.

On this day 14 years ago, I had to face the fact that my precious son was dying and there wasn’t a damn thing I could do to stop it, and now I have to live with the result of our backward, cruel and immoral policy decisions.

‘Keep Your Eyes on the Prize’

Civil Rights for African-Americans has been advanced by centuries of struggle, but we still have institutional racism in every system. We’ll never see equality unless we keep fighting. We can’t just accept this, even though we know we won’t fix it overnight.

It’s so easy to get distracted. There’s just so much going on and it’s hard to keep track of it all.

What’s worse, the more we think about all that’s in the news, the more we want to shut it all out.

We’re in the middle of a deadly pandemic that millions of people refuse to take seriously, and the far-right has stacked the courts to make it “unconstitutional” to regulate lethal behaviors like not wearing a mask to slow the virus down.

We’re looking at a dictator in Russia who’s trying to expand his influence by conquering another sovereign country.

Our own federal government is dysfunctional, thanks to two Democrats who have been bought and paid for by Big Money — fossil fuel interests, banking interests, pharmaceutical and insurance interests — and the courts are not going to do a damn thing to stop them.

We’re a year into life after a violent attempted coup and not one of its leaders is in jail. Not one.

The leader of that coup, the former occupant of the White House, has been banned from social media, but he has yet to be arrested and he still has millions of followers who have been propagandized into believing he’s sent by Jesus.

Voting rights are being attacked in half the states, with gerrymandering and purging, reducing the number of voting machines available in heavily Democratic precincts, the former occupant of the White House is trying to install his own lackeys to count the votes, and we can’t seem to do a damn thing about it — like arresting the former guy for trying to rig the last election before he gets another chance.

We have a president who’s actually done a remarkable job at cleaning up the mess that was left to him. No, he hasn’t fixed everything, but he’s working on it. Is he doing enough? I don’t think so, but he’s doing something, at least. Still, the corporate-owned media is criticizing him as though he were as damaging as the former guy.

That leads us to another big issue that few people seem to be aware of: Big Money owns the media, and they’re not doing the job of an unregulated free press. Instead of being a government watchdog, they’ve become the lapdog of the most corrupting influences. They exist to distract people from the truth. That we even allow Fox to call itself a news company is disgusting, since they peddle an incredible amount of misinformation and outright lies.

Even the legitimate news sources are filled with the distractions of celebrity and lifestyle news and sports instead of focusing on what’s truly important.

So, what — other than posting our outrage on social media — can we do?

Well, we can vote. That’s just the most basic responsibility of a citizen in a Democracy. We all need to read up on the candidates in every election and vote for the person who lines up most closely with our views.

With our primary elections as they are set up, it’s highly unlikely we can get a true progressive into office, but we can vote for people who aren’t blatantly trying to overthrow the government.

The impotant thing to remember is that no matter how hard we work, this can’t be fixed overnight. The oligarchs spent 60 years getting to this point. Read the books, “One Nation Under God,” by Kevin M. Kruse, and “The Family,” by Jeff Sharlet. They chronicle the whole process by with the oligarchy harnessed the energy of Evangelical “Christianity” to capture election after election, starting with local school boards and town councils, and working their way up. Defeating them will take a Herculean effort and it will take time.

Meanwhile, we need to be loud — really loud — in our opposition. We need to collaborate with each other, form alliances and partnerships.

We can’t stop and we can’t be distracted.

The prize is a system that offers a better life for everyone — voting rights, living wages, access to health care, improved public infrastructure, a truly just justice system — instead of a handful of the most privileged and corrupt.

Let’s focus on that, one voter registration, one election, one public office, one court decision at a time, all while remembering our goal.

It’s time.

It’s been a year since the former president tried to stage a coup and he’s still tweeting and screeching from his lair in Florida. His cronies are still roaming free and our Democracy is still in serious danger.

Between the pandemic and the political uncertainty, all of which are made worse every day these people remain at large, anxiety levels are creeping higher every day — at least mine are.

Toss in a flood in my basement last August, the damage from which is still being fixed five months later because of “supply chain” issues (I suspect these are deliberate so prices can be raised), and all I want to do is knit and bake bread. It’s hard to concentrate long enough to read the news in the morning and I can’t watch it on TV.

Like others, I lay awake nights wondering whether humanity will even survive. God knows we don’t deserve to. We’re following “leaders” who beckon us down the path to destruction, burning the forests, over-fishing and polluting the oceans, resisting switching to renewable sources of energy and blithely unaware that the methane we’re allowing to escape into the atmosphere will keep increasing until we no longer can breathe. When I mentioned this to a friend a couple years ago, his response was, “Human are clever.” I had to remind him we’re not clever enough to be able to breathe methane.

We’re living in a failed state. Not failing, failed.

We can’t pass laws that will save the planet, let alone ease the suffering of the nearly half of Americans living in or very near poverty. We can’t raise wages, we can’t offer health care, we can’t even assure people their votes will be counted on Election Day. We can’t stop mass shootings. We can’t manage immigration. We can’t maintain our infrastructure well enough to prevent the shutdown of the busiest highway on the East Coast in a snowstorm, leaving thousands of people stranded in their cars for more than a day. We can’t even work together to stop a deadly pandemic.

All of this because we won’t tax the richest of the rich, but we still spend trillions on the war economy. We still force poor people to go to war in exchange for an education, and too many either don’t come home or come home so compromised that an education is difficult, at best, and we address the issue of veteran suicides with a “Thanks for your service.”

In addition to suicides, rates of addiction and overdose deaths have skyrocketed because people have no hope of their lives getting any better and the Sackler family took advantage of people’s pain so they could increase profits by fueling the addiction epidemic. They’re still free, too, by the way.

The stock market keeps rising, though, so we’re told the economy is blazing hot, and it is — for the privileged. Most people don’t have money to invest in the stock market, and that wealth isn’t trickling down. A decade after workers began asking for $15 an hour, some states and municipalities are offering it, but the minimum wage would be almost $24 an hour now if it had kept pace with inflation, and frankly, it takes that to live comfortable anywhere in the country.

Housing prices continue to surge, leaving nothing for the people who work for a living, especially those in the service jobs we claim are so essential. Homelessness is rising with the prices as investors and corporations buy up more and more of the housing stock. There are more than enough empty housing units to house every homeless person, but we make them sleep in the streets and then arrest them for vagrancy and demolish the small tent communities they build.

We place people in poverty with bad public policies and then vilify them for being poor.

Meanwhile, the leaders of the Jan. 6 insurrection still walk free a year after their coup attempt because we appear to not have a functioning justice system. We have a Supreme Court packed with right-wing idealogues to speed us along the path to totalitarianism. Already, women are losing control of our bodies and voting rights are being stripped away.

I have been quiet lately, as I try to process all of this. It’s time to start speaking up again.

We have arrived at the last minute. We are tettering on the edge of ecological and economic collapse unlike anything we’ve seen in human history. I’m thinking the end of the Bronze Age was just a practice run for what’s on the horizon already.

It’s time. If we don’t move now, it really will be too late.

Mike Day, for the 13th time

This image, taken seven months before he died, is probably my favorite. He was so handsome and his eyes were so mischievous. Also, he wasn’t making a goofy face.

On this day 13 years ago, the world lost a fabulous jackass, and I lost my precious son.

I’ve told this story every year, of how, when the hospice nurse arrived, we couldn’t rouse him, of how he finally woke up, of how the nurse kept saying he could still be with us for days, but I knew better.

I’ve told about how he tried to tell me he loved me with his last bit of strength, and of how he saw my sister, who had died a year and a half earlier.

I re-live it every year. I see him in the bed, I feel it in my gut, that desperate wish to keep him here with me, that secret, erroneous, knowledge that my heart would stop when his did.

I can hear my older son’s voice sobbing, “He’s dead? No, no. Oh, no!”

What I remember most is how pissed I was when he died and I didn’t. I sat there for a few seconds, waiting for my turn to go. Certainly God didn’t intend to leave me here.

But my heart kept beating, beating, beating …

Damn!

I remember calling my colleague, John Boyle and asking him to tell everyone in the newsroom. John called back a few minutes later and apologized for being insensitive before asking whether I knew what day it was. Yeah, I said, I knew and I believe it was intentional.

I remember the woman from the funeral home demanding I had to come into the living room to sign some papers that were on a clipboard resting on my son’s corpse. I couldn’t bear to see that body bag. I couldn’t bear the thought of watching that body bag being taken out and loaded into an ambulance.

I asked her to come into the kitchen and she said it would be easier if I just went out there because she was in a hurry.

That’s when my pastor, Joe Hoffmann stepped in. He walked into the living room and calmly told her she needed to step into the kitchen now. I’m still grateful for that. It’s bad enough my son died from a broken health care system, I didn’t need the memory of him being taken out of my house in a body bag.

But I still had to get used to telling people he had died.

“How’s your boy?”

“He died.”

“Oh my God, I’m so sorry!”

I remember all the kindnesses — the hugs, the visits, the meals, even a very expensive bottle of single-malt Scotch. I remember the cards and letters, the kind gestures and the words of condolence. I would not have survived without all of the love from my friends.

I had to get used to telling his story over and over and over … hundreds of times in these last 13 years.

This morning I woke and grabbed the tangle of yarn we once called “boo bankie,” a blanket I crocheted for him when he was little. As it unraveled, he tied knots in it until it was a tangle little bigger than a football. He always had it with him — he couldn’t sleep without it. When I pulled it close to me this morning, I wanted to smell him on it, but the antidepressants I was on after he died robbed me of my sense of smell.

But as devastated as I still am, today is the day we celebrate the crazy, funny, tragic and far-too-short life of a proud jackass.

Today is the 13th annual Mike Day.

After Mike’s memorial service, several of his friends came up to me to announce that April 1 was no longer April Fool’s Day, it would be known henceforth as Mike Day, since he was the biggest fool they knew.

“We’ll wear plaid, eat Cadbury Creme Eggs and do silly things all day long,” one of them said. “All the other fools are just amateurs, anyway.”

So, every April Fool’s Day — excuse me, Mike Day — I take the day off. I have plaid sneakers, plaid socks, a plaid shirt and a plaid hat. If it was a little warmer today, I’d wear my plaid shorts.

Tomorrow I’ll get back to work because we still don’t have a president who will work for Medicare for all.

I’ll get back to work because even though 70 percent of Americans want Medicare for all, we still don’t have legislators and policy-makers who will get it through for us. And that’s because elections can be bought, paid for by the people who have more than they ever can spend, but who think people in need are just lazy.

I’ll get back to work because even before the pandemic began, an American was dying every eight minutes from lack of access to care.

I’ll get back to work because up to one-third of Americans who have died of COVID did so because they couldn’t get early care.

I’ll get back to work because more Americans lack access to care now than did when my son died, despite passage of the Affordable Care Act because Big Insurance has found ways other than pre-existing conditions to deny coverage (restrictive networks and astronomical deductibles keep millions of people from getting the care they need).

I’ll get back to work because I made a promise to keep working until we have universal access to care or until my heart finally stops.

Today was our last day with him.

I miss his laugh.

I miss his empathy.

I miss his wisdom.

I miss his twisted sense of humor.

Unless you have lost a child to injustice, you can’t understand. You have no earthly idea. I can only pray you never find out.

Bringing my son home to die

This image, taken seven months before he died, is probably my favorite. He was so handsome and his eyes were so mischievous. Also, he wasn’t making a goofy face.

It was 13 years ago today.

Thirteen years ago today, I was at my son’s apartment in Cary, getting ready to take him for chemo, when he looked up at me and said, “I’m ready for this to be over.”

He hated chemo, but he wanted to stay and see his nieces and nephew grow up.

He wanted to be around to crack inappropriate jokes, to eat my homemade bread, to go to the beach with his friends, to cook gourmet food, to enjoy late-night conversations with other night owls, to snuggle up to his cat, to help people get and stay sober, to build computers from spare parts.

We knew he had to have gained two pounds for there to be any hope the chemo was working. And we knew he had, at most, a year, because the doctors at Memorial Health System in Savannah had ignored his symptoms and refused to do a colonoscopy until he was vomiting fecal matter and weighed just 110 pounds (he was 6 feet tall).

I would never be ready for this to be over.

When we arrived at the clinic at Duke Medical Center, he stepped on the scale.

He had lost another pound.

The look on his face proved to me he wasn’t any more ready for this to be over than I was.

“I tried!” he said. “I really tried.”

That was it, then. There was nothing more we could do. His doctor, Herbert Hurwitz, sobbed as he told Mike, “You’re a good person, Mike. You don’t deserve this.”

It was so different from the doctor in Savannah, who had allowed my son to come perilously close to death before doing anything. And his dismissive attitude as he said, “We can do a little chemo, I guess, but you’ll have to get your affairs in order.”

That had been two years earlier, when he shrugged and gave up on Mike after allowing him to almost die three different times, first by not investigating what was wrong for months and months, the second time by not treating a stricture in Mike’s small intestine until he weighed just 104 pounds and then by not treating a life-threatening infection in his surgical incision. Had we not sought another opinion and paid for a consultation, he would have died in 2006. Dr. Hurwitz adopted Mike because he knew sending him back to Savannah was a death sentence. He fought for Mike’s life as hard as we did, and he gave us two more years with him.

But the damage had been done by that callous jerk in Savannah and his colleagues, who had written in my son’s medical record, “Patient needs a colonoscopy but can’t afford it.”

On this day, we learned my son’s life was to be measured in days or, if we were lucky, weeks.

My son would die because we as a society only value the lives of people who can pay.

He would die because insurance companies were too greedy to sell him a policy.

He would die because doctors were allowed to let him suffer.

He would die because we live in an anti-life culture populated by people who pretend to be “pro-life,” and “Christian,” but who have no idea of the meaning of either of those terms.

As we were leaving the clinic, he looked at me and said, “How much time do you think I have? Two weeks?”

“God, I hope it’s more than that,” I said.

It would not be. He would die two weeks later, with me by his side, holding his hand and telling him how proud I was that I got to be his mom.

I brought him home with me that day and called Hospice, grateful that I didn’t have to do this alone.

His best friend, James, and his now-ex-wife, Janet (he had to leave to get Medicaid), would come the next day and spend the next two weeks helping to care for him. We had a team of people who adored him ready to dedicate the coming days to making him comfortable and listening to his bad jokes and his deeply wise reflections on life and death.

Thirteen years ago today, I brought my son home to die from medical neglect and societal greed.

Since then, more than a half million Americans died from the same thing before this pandemic even started, and now, up to one-third of the deaths from COVID-19 are being attributed to people not being able to get care early on in the course of the disease.

I worked for the passage of the Affordable Care Act, only to watch it being perverted by insurance companies to their own benefit. While 45 million were uninsured when the ACA passed, we have at least that many now, and another 40 million or more who can’t afford to use their health insurance because of deductibles of thousands of dollars — the average is over $3,000 now. Tell the 141 million Americans who live in or near poverty they can just use their insurance when they can’t even pay a $400 surprise bill without borrowing money.

In other words, all the work I’ve done, alongside other advocates, for the last 13 years has done not one bit of good. While the estimate 13 years ago was that 45,000 people were dying from lack of access to care in this country, the estimate a year ago — before the pandemic began — was 68,000.

I am exhausted. I feel defeated. As my son said 13 years ago today, I am ready for this to end.

On this day 13 years ago, I brought my precious son home to die. We would have just two weeks left with him.

A note to the president

President Joe Biden and Dr. Jill Biden observe a moment of silence to commemorate the half million Americans lost to COVID-19

Dear President Biden:

You spoke my heart last night as you honored the half million souls lost to COVID-19 in the last year in this country.

It’s hard to wrap my heart around the grief that runs through this nation right now. But you need to know this grief that surrounds unnecessary death is far older than the pandemic, and it needs to be addressed.

You, having suffered so much loss, are perhaps the most empathetic man ever to set foot in the White House, and you are the polar opposite of the previous occupant in that respect (and in many others).

But you need to know this grief surrounding unnecessary death has been with us for decades, as people who have no access to health care are tossed aside like so much garbage.

When you spoke of opening the closet and not just seeing, but detecting the scent of your loved one on the clothing hanging there, I thought of the leather jacket my late son wore, its scent now dissipated after 13 years.

When you spoke of watching your son’s life fade from his eyes, I remembered sitting by my own’s son’s side as he breathed his last, I remembered being so angry that my heart didn’t stop, too.

Those final six weeks of his life are etched deeply in my very being, and I re-live them every year — now for the 13th time, as my heart keeps on beating.

I remember the sound of his voice as he asked what I was going to do with the “Dead Kid Card.” He had this twisted sense of humor, you see, and he played the “Cancer Card” the whole time he was sick. As he lay dying, he mentioned that I would have the “Dead Kid Card,” and he wanted to know how I would play it.

“I don’t want it,” I said.

“Doesn’t matter what you want,” he said. “It’s being dealt. What are you going to do with it?”

He paused as I sat, staring.

“What are you going to do?”

I promised him I would fight for health care for everyone every day, in every way I could imagine, as long as I had breath in my body.

Mike was born with a rare birth defect and it left him very vulnerable to a particularly nasty form of colon cancer.

That birth defect was deemed by insurance companies to be a pre-existing condition, so he couldn’t buy insurance. Without insurance, he had to pay for the colonoscopies he needed every year out-of-pocket. He’d already had pre-cancerous polyps removed before he was 25.

Mike decided to go back to college when he was 28, and since he was working part-time while he went to school, employer-based insurance was denied to him. He couldn’t find a doctor who would let him pay for a colonoscopy in installments, so he went without. It was a risk he had to take because there were no other options for him.

He got sick in the beginning of his junior year. Abdominal pain, vomiting, constipation … His doctor demanded $2,300 cash up front, so Mike still couldn’t get the test he needed so badly. His doctor wrote in his record, “Patient needs a colonoscopy but can’t afford it.” Can you imagine seeing that in your child’s medical record?

He went to the emergency room, but as you know, they only have to stabilize you there, not find the root cause of your problem. So, he was sent home with pain pills and a laxative — and a bill for several thousand dollars — when his real problem was a malignant tumor. No one helped until it was too late so save his life.

Even after he got sick, he was denied Medicaid until he left his wife.

He applied for disability and was denied. Approval ultimately took 37 months and his first check came nine days after he died.

Mike died at 3:50 p.m. on April 1, 2008, just a few months before you would become vice president. At that time, it’s estimated an American died once every 12 minutes — 45,000 a year — from lack of access to health care. By early 2020, before the pandemic, that number had risen to 68,000 a year, or one every eight minutes.

You know the grief of losing someone whose life you held more dear than your own. Imagine it had happened because of systemic medical neglect, and that neglect was not only tolerated, it was protected.

As long as private insurance companies are in control, they will dictate who gets care and who does not. They found a way around the Affordable Care Act. They simply jacked up deductibles until most people couldn’t afford to use their policies. The average deductible — or, as I like to call it, ransom — is more than $3,000 at a time when 140 million Americans live in or near poverty. They can’t pay, so they don’t get care.

Many of these half million COVID deaths could have been prevented of people had been able to seek help earlier in the course of their illness.

Mike was born on my birthday, so I mark the passing each year as another year without his sense of humor. I miss that most of all.

I miss the sound of his tone-deaf voice as we sang “Happy birthday to ME!” at the top of our lungs every year.

I miss the late night phone calls where we would talk about everything from Phil Collins to philosophy.

I miss cooking with him. I miss making up new recipes.

I miss the way he slathered butter on my homemade bread while proclaiming, “The only thing wrong with this bread is that it’s not at my house!”

I miss his utter impatience with bad drivers, actually hollering out the car window, “Hey! It’s the long, thin pedal on the right. You press it down with your foot!”

I miss how he loved animals and talked to them as if they could understand him, and how often it seemed as though they did.

And my grief is multiplied by a half million deaths from the same cause since he died. I live in a state where lawmakers steadfastly refuse to expand Medicaid. Three people die here every day from systemic neglect, just the way my son did, and these lives are no less precious than his or mine, or yours.

I know you to be a man of deep, deep empathy, so I can’t understand why you wouldn’t be pushing Medicare for all. That alone is the reason I didn’t support you in the primary election, and why I was so angry when you became the nominee.

All this empathy needs to be focused on preventing the depth of grief you and I live with every day. You understand it, and you can do something to lessen it.

When President Obama signed the Affordable Care Act, a hot mic caught you calling that step forward “a big f***ing deal,” and I loved that.

But that big deal has been derailed by Big Insurance, and we won’t be able to find a fix without getting them out. It’s time for Medicare for all.

You have more power to fix this than anyone else. You need to step up and do the decent thing.

Everyone deserves care. Everyone.

Sincerely,
Leslie Boyd

The day my joy ended

This was the day we learned that Mike would not survive. It was also the day a homeless man named Tommy McMahan died alone in a jail cell because he didn’t want to leave the hospital and die on the street. I grieve them both today.

This was the day I knew I’d never be joy-filled again, that every happiness I might manage to experience was to be marred with unfathomable loss.

This was the day 13 years ago that we learned the cancer was back and we knew there would be no cure.

This was the day we learned my son would die. And every year, I am forced to relive those last weeks of his life, and finally, his death.

I can still hear the echo of his voice. “Mom, the cancer’s back. If we’re lucky, I might have a year.”

We weren’t lucky. He would have just six weeks.

I don’t remember much of what was said after that, other than, “I’ll be there this afternoon.”

I was on my way into work and my husband was a few minutes behind me. I decided to go into the office and not say anything to anyone until he arrived, and then it would be OK if I fell apart.

All of this was because no doctor would see him because he didn’t have insurance. And he didn’t have insurance because a birth defect was a pre-existing condition. And doctors were allowed to turn him away, even though they knew to do so was a death sentence. And the only ones who suffered were Mike and all the people who loved him.

When my husband got to the office, I went to his desk and tried to tell him quietly, but I fell apart and sobbed uncontrollably.

How was I going to go on without my son?

That might have been the moment I decided my heart would stop when his did. Of course it would. There was no way I could outlive him.

“I have to go,” I said. “I’m heading out there now.”

My husband decided it would be better if both of us went, so he went in to the editor’s office to tell him. The editor never came out to face me. I remember how upset I was that this man I had worked with for several years couldn’t even bother to come out of his office to say he was sorry about my son.

I remember my colleagues hugging me and offering whatever words of condolence they could muster, and most of them only finding, “Oh my God, I’m so sorry.” Surprisingly, those words from people who cared about me were enough to help me pull myself together.

It’s a nearly four-hour drive from where I live to where Mike lived, just outside of Raleigh. I don’t remember a moment of that drive. I hadn’t seen him in several weeks and I was shocked to see how much weight he had lost and how close to death he looked.

This was really happening. My precious son was dying because no one had cared enough to help him before it was too late to save his life, because our system was — and is — so damn broken.

We spent a couple hours with him, his wife (they’d had to split up so he could get Medicaid and have any chance at all of surviving, but they never stopped loving each other) and his best friend, and then got a motel room.

I had wandered across the street to an electronics store because I couldn’t just sit in the room, and as I browsed, I saw a photo printer and thought to myself that Mike could help me set it up if I bought it.

Then I remembered that Mike would be gone soon, and I was overcome once again. I ran back to the motel room and fell apart again.

My phone rang a few minutes later and it was a colleague asking for numbers of people to call who could comment on the death of a homeless man named Tommy McMahan. I was the reporter covering social services issues, so I would have written Tommy’s obituary. I had the contacts for a story like this one.

Tommy had gone to the hospital because he was having trouble breathing, and it was frigid outside. They diagnosed him with pneumonia and discharged him with medication, but he begged not to be turned out into the sub-freezing night. So, someone called police so he could at least be in a warm jail cell.

That’s where he died in the early hours of the morning. Alone.

I knew my son would have people who loved him by his side when his time came. Tommy had died homeless and alone. It was unbearable to think about it.

This has stayed with me almost as vividly as the news that my son was dying. That we as a society can allow people to die from lack of access to even the most basic necessities is so deeply immoral that I have no words to express it. Even now, 13 years later, I cry over the loss of both of these precious human souls — and the hundreds of thousands — more accurately, millions, when you consider all the ways poverty causes premature deaths — of precious human souls who would follow because we love money more than life itself.

We still haven’t fixed any of this. And don’t tell me the Affordable Care Act fixed it. Insurance companies have subverted the law to their own advantage and more people were dying from lack of access to care before the pandemic hit than were dying in 2008 (45,000 a year then, 68,000 before the pandemic hit). The ACA helped some people. But the average deductible now — the amount people have to spend out-of-pocket before seeing any benefits — is more than $3,000 in a time when nearly half of Americans say they have to borrow money to pay a surprise bill of $400. The ACA did not fix this.

Every year on this day, I weep from the overwhelming grief of watching my son die from medical neglect, but also for Tommy, and for all the people who are still unhoused.

I fume as I see people praising someone for building coffin-sized boxes for fellow human beings to “live” in, but who then stand firmly against paying people a living wage in exchange for a week’s work. I live in a perpetual state of grief and outrage, and I can’t understand why everyone else doesn’t, too.

I think of today as Tommy McMahan Day, a day to remember this man I never met, but who touched my heart so deeply.

I continue the anti-poverty work in memory of my precious son and in memory of Tommy. May they, and the millions who have died prematurely from poverty in the 13 years since their hearts stopped, rest in peace.

Still waiting for health care

My late son, Michael, with his niece, Meghan.

Today marks 13 years since my son called me to say he was feeling better because the doctor found and drained a couple quarts of fluid from his abdomen.

We didn’t know why the fluid was there, but in the back of my head was the fact that fluid like that is a symptom of end-stage cancer.

A week later, we found out that was the cause, that the cancer was back and nothing could be done to cure it. He had, at most, a year to live. He would die just six weeks after getting the news.

This year is the 13th time I have relived this seven weeks, and I still have to lament that we are no better off than we were in 2008, when I promised my son I would work for access to health care for every human being.

In fact, things have gotten even worse. Where some 45,000 people were dying every year from lack of access to care in 2008, that number has been revised upward to 68,000 now — and that estimate is from before the pandemic began.

We had 35 million people with no insurance. We still have that many, plus another 45 million or more who can’t gain access to care because of sky-high deductibles. In a time when nearly half of Americans say they can’t pay a $400 surprise bill without borrowing money, 70 percent of employer-sponsored policies have deductibles over $1,500, and the average deductible on a health insurance policy is over $3,000.

That is not access to care.

Today, I live in one of 12 states that have so far refused to expand Medicaid to cover everyone living in poverty. I have tried calling, writing, visiting and pleading with the Republicans in charge to accept the billions of dollars in federal money to cover people whose incomes can’t cover insurance. These are people making minimum wage. Many of them already have chronic conditions that they can’t manage without care, and that will kill them prematurely.

In North Carolina, three of them will die today.

Three more will die tomorrow, and the next day, and the next, just the way my precious son did 13 years ago on April 1.

I have been arrested three times in Raleigh, trying to talk to legislative leaders about access to health care. I was not violent or even threatening. I asked to speak to leaders and was told they weren’t there, even while I could see them sitting there. I offered to wait because what I had to say was so urgent. Instead, I was arrested and hauled off in zip-tie cuffs.

I am forced to relive these last days of his life year after year after year with no end in sight to the carnage caused by our broken system.

I had hoped to see some improvement by now, but the Affordable Care Act has been so sabotaged by insurance companies and other monied interests that we’re actually seeing more people die from lack of access to care than we did 13 years ago, and we have more people who don’t have access to care.

I promised my son I would work for access to care for everyone as long as I have breath in my body. I have kept my promise. But I really hoped we’d have seen some progress by now. Instead, we’ve been skipping happily backwards, giving insurance companies, Big Pharma and the rest of the crooks everything they want, while keeping us fooled that we’re doing better because pre-existing conditions have to be covered and young people can stay on their parents’ plans — as long as their parents can afford to have insurance plans.

I’m exhausted. I’m stressed. I’m grieving. I’m frustrated. I have all but lost hope that we can get anything done.

But I will not stop.

Everyone deserves care.

You can help in this fight. Every one of you can call legislators at the state and national level and let them know you need to see improvements if they want to keep their jobs. Demand that every candidate tell you how they plan to improve health care access.

Then, you need to vote as though health care matters to you, because health care needs to matter to you.

You need to care that people are dying every day from curable and/or preventable causes.

My son would be a lawyer now if he had survived our broken system. He would also be a proud jackass, a master of inappropriate humor and practical jokes, a dedicated volunteer helping people get and stay sober, a man with a brilliant mind and a kind heart.

Those of us who loved him still grieve every day over this hole in our hearts that won’t ever heal.

This has to stop. We have to demand better, and we need to demand it now.

Grieving one son and worried about the other

This is what I’d like my back yard to look like in a couple months. It’s one of the ways I find peace in the spring and summer since my son died 12 years ago.

Isolation, Day 6: Is everyone still wearing pants?

It feels very strange to be home and know I’m going to be here for awhile. It’s another example of what my grandmother used to tell me: “Be careful what you wish for.”

How many times did I sigh and wish I could just stay home and chill for a few days? It’s beginning to look like it could be a few months. My husband and I decided we probably could enjoy a beer with friends online via Skype or Zoom, so we’re looking into that today.

Meanwhile, I’m going to order some seeds and plants online for the garden. I have lots of work I could do out there, and if I get that all taken care of, I could order some stuff from Home Depot, get onto YouTube and learn how to do some home repair and remodeling.

What makes this hard is that I have little to distract me from this time of year, of reliving the death of one son and fearing the death of my only surviving son.

What makes this hard is that I have worked for a dozen years to try and convince legislators and policymakers how important it is to get access to health care for everyone, only to be called a commie, a radical and countless other names. I tried to speak to them, only to be arrested time and again rather than have anyone hear me.

And here we are, facing a genuine health care crisis with one of the most broken systems on the planet. We could lose 2.2 million Americans — twice as many as would die if we had done the right thing and fixed this.

Twelve years ago today, all hope of any serious time with my son was dashed, as we learned the chemo wasn’t working and there were no more options.

Mike had his third chemo appointment this morning. His doctor had told him at the previous appointment that he needed to gain two pounds before today. I had gone into the Duke Chapel to find a quiet corner and pray for those two pounds. It seemed like so little to ask. Two pounds. Two fucking pounds.

I slept on the couch at his apartment the night before so we could get an early start, and when we settled in with a cup of coffee, he sat in the easy chair across the room and sighed.

“I’m ready for this to be over,” he said.

Maybe he was, but I wasn’t. I would never be ready to lose him.

We went to Duke and he stepped on the scale.

He had lost a pound. I still remember the look on his face as he turned to me and said, “I tried. I really tried!”

This was it.

His doctor’s eyes began to tear up.

“I want you to know you’re a good person and you don’t deserve what’s happening to you,” he said. I wished his original doctor in Savannah had felt that way — it would have saved his life.

There would be no more chemo. There would be nothing but Hospice.

The physician assistant advised him to come home with me.

“Go today,” she said. “Let people take care of you now.”

As we headed back to the car, me pushing Mike in a wheelchair because he was too weak to walk, he turned to me and asked, “So, how much time do you think I have left, two weeks, maybe?”

“Oh, I hope we have more than that,” I said.

We did not.

His heart would stop, and mine would break, two weeks later, almost to the moment.