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.

Self-isolation, Day 5

The perfect fit for a day of self-isolation. The only problem? No pockets.

Two words: Yoga pants. I’m surprised it took me five days to see this. I don’t have to wear uncomfortable clothes, although I’m not so far gone I won’t put on a bra.

I’ve been saying for months I need a week with no obligations. So far, I can’t complain. If I’m here for a month, I might actually get the inspiration to clean out the closets and the garage.

I always thought I was an extrovert, but I think I have become more of an introvert. I’m sitting here in my office, by myself, sipping coffee and thinking about what I’m going to need for the garden this year. Compost for sure. I need to order a load.

Trying not to think about what’s left of our life savings and how we’ll cope if the stock market doesn’t come back. The garden is part of that plan.

And of course, my mind goes back 12 years, to a day when I still had hope my son would be with me a little while longer.

On this day, I was driving to Cary, a four-hour trip, so I could take Mike to his third chemo infusion the next day. I had arranged for an interview in Raleigh for a story on the mental health system. I didn’t dare take a day off because my boss was charging me with vacation days, and I only had a few left. I couldn’t afford unpaid leave, so I was scheduling interviews at state agencies when I was in Raleigh and writing stories in the evening. I didn’t have the luxury of just concentrating on caring for my son.

I think about this now as many friends face weeks or months without a paycheck as they try to avoid getting sick without access to health care.

Norway has asked its college students to come home from the US because of our Medieval health care system.

Until now, the death rate from lack of access to health care has been one American every 8 minutes. It was one every 12 minutes when my son died, but a new Yale University found it to be higher now, and it’s about to really spike as we turn people away from hospitals that are unprepared for the influx of desperately ill people.

For the last 12 years I have worked relentlessly for a system that benefits people over profits, and I have been called communist or just plain crazy for suggesting that even unemployed people deserve health care. I have been driven from a job I loved by right-wing Tea Party fools, and arrested for trying to speak to fascist lawmakers who don’t care that people without access to care are dying.

We’ve made progress in public opinion over these last dozen years, but not in action. The Affordable Care Act left the system in the hands of the profit-mongers, who subverted it to meet their own needs. Nearly three-quarters of employer-sponsored plans are high-deductible ($1,500 or more) at a time when 40 percent of Americans say they can’t afford a surprise bill of $400.

Do you have any idea how much worse this pandemic will be here than it has to? Do you think about how many people will die who should have survived?

It’s about to get real, folks, partly because our public health systems are so broken after decades of pillaging by Republicans and the refusal of Democratic neo-liberals to reassemble it when they had the chance.

A lot of people are going to lose loved ones in this pandemic, and a lot of them will be people who would have been able to survive if we’d only had the leadership we needed to get our health care systems in order. This virus will not spare the wealthy, although they can afford to stay out of work a lot longer than poor folks. Still, they seem to be the ones least willing to isolate.

I’m not talking about people who were on vacation or visiting family when this started to get real — I’m talking about people like the owners of the Biltmore Estate who want to squeeze every dime they can before they’re forced to close (yes, the tourist attraction is partially open still), hoping to attract tourists when they should be closing down entirely. I’m talking about restaurants advertising how clean they are to try and attract diners.

People are not concerned enough, and plenty of people will die who shouldn’t because there is no leadership coming from the White House. Again, our government is falling down on the job and the upshot will be tragic.

I know how this kind of tragedy feels because on this day in 2008, I had just 15 days left with my precious son.

Stop pressuring people to vote your way. Your privilege is showing.

He makes a lot of us uncomfortable and you don’t have a right to demand we vote for him.

I have something important to say, and I need to be heard.

I don’t agree that Biden is the answer to any of our problems and I don’t want to be forced to vote for him.

I also don’t want to have you calling me names and telling me to fuck off because I don’t agree with you.

First of all, he is not yet the nominee, so trying to force me to pledge fealty to the failing candidate of a party that is fast becoming irrelevant before he’s the nominee is just cruel.

Let me tell you why. Twelve years ago today, I was trying to prepare for a life without my beloved son. I was facing every parent’s worst nightmare and I was terrified. And I am forced to re-live those final six weeks of his life every damn year.

Here we are, a dozen years after I promised my son I would fight like hell to prevent other people from dying the way he did and you’re calling me every name in the book for refusing to swear to vote for a man who won’t do a damn thing to fix a health care system that’s even more broken than it was 12 years ago.

When my son died, an American was dying every 12 minutes from lack of access to health care; today it’s once every eight minutes.

The Affordable Care Act isn’t working and Biden has said he won’t move toward a real fix for it. He has said things will stay the same.

So, here I am, grieving for my son with a pain that has not gotten any better since he breathed his last, and you’re screaming that I have to get in bed with the enemy.

So my choice is a man who doesn’t care that someone dies once every eight minutes or one who’s pretty close to gleeful about it.

Stop telling me to shut up and vote for someone who thinks things are fine, especially since the nominating process isn’t half over yet.

Stop telling me I have to vote for a man whose actions toward women are disrespectful of their personal space and dismissive of their concerns about dominion over their own bodies.

Stop demanding I vote for a pro-war, pro-Wall Street candidate when it violates everything I stand for.

Stop disrespecting who I am and what I stand for.

I have not said I won’t vote for this demented old creep; I have said I don’t want to.

I understand about the Supreme Court and all the rest.

But we don’t have time to waste on climate action and he will waste time. I have grandchildren and great-grandchildren and I want them to inherit a planet they can inhabit.

We can’t keep putting off giving low-wage workers a chance at a decent life with a living wage, paid sick leave and access to quality health care.

Your insistence on everyone getting in your boat assumes that we all have ladders to climb, and too many of us don’t. As the saying goes, you can’t pull yourself up by your bootstraps if you don’t have boots.

Your intransigence proves your level of privilege. You can wait four years for things to get better. Too many of us can’t, but that doesn’t matter to you.

It isn’t enough to vote for Trump-lite. The status quo is not good enough, and if it is for you, then you need to open your eyes and check your privilege. You need to see how too many around you are suffering. Open your ears and listen to the stories of people who can’t provide for themselves even though they’re working two and three jobs.

Joe Biden is NOT good enough.

If forced to vote for him, I will, but he will not win. It will be a replay of 2016, and we will get four more years of the current mess. And then you’ll blame the people who just can’t bring themselves to vote for more of the same.

I refuse to get angry with people who can’t face a Biden presidency because the thought of it leaves me utterly without hope.

So before you yell at me to shut the fuck up, maybe you should try to understand that I don’t want your child to die the way mine did. Maybe you should look and listen to the 140 million Americans who live in or near poverty, who have no hope of a better life if they have to live — and all too often, die — without the changes we need.

We talk a lot about getting in line, but nowhere near enough about where that line is headed.

Yes, I am pissed off. You bet I am.

This is my country, too, and I’m just trying to make it a better, more moral place for the people I care about. And I care about everyone.

A dozen years and still no health care for all

Mike with his niece, Meghan, in 2000. His brother’s children adored Uncle Mike because he was so funny and kind.

Twelve years ago today, as I was driving into work, I got the phone call that would change my life.

I can still hear his voice. “Mom, the cancer’s back. There’s no cure. The most I can hope for is a year.”

There wouldn’t be a year. In fact, six weeks later, to the day, he would breathe his last.

I can’t describe my feelings that morning — the same feeling I have today as I re-live the trauma of learning there would be no hope for my son to realize his dream of going to law school to become a legal aid attorney because “poor people deserve a good lawyer, and I plan to be the best.”

I couldn’t cry because I had to get into work, and I knew once I started allowing myself to feel what was happening, I would lose control. My husband would be in the office a half hour after I got there, so I would say nothing to anyone until I could talk to him. If I spoke to anyone about it, I knew I would fall apart.

I sat down at my desk and shuffled papers, looked at my schedule, checked my phone for messages, checked my e-mail. None of it registered; I had to just go through the motions until my husband got there.

But when he did, and I walked over to his desk to tell him, I fell apart. It was all I could do to stay on my feet. I couldn’t breathe except to take in air with each wracking sob.

I don’t remember much about the next few minutes except that my colleagues stepped in to hold me up while my husband went to tell the managing editor that we were leaving to go to Cary and be with Mike. The editor never came out of his office to speak to me.

This day begins the most terrible six weeks of my life, re-lived now for the 12th time. Each year, the pain of losing him comes back, as fresh and new as it was 12 years ago.

The most painful part of it all is that it never should have happened. If he’d had access to an annual colonoscopy, he would still be here, probably a legal aid attorney working with people in Durham. I imagine him in the fight to end cash bail, working to get people who are awaiting trial released from jail so they wouldn’t lost their jobs, housing or children.

If we had a health care system like those in the rest of the industrialized world, he would still be here, still be a jackass who loved nothing better than a good practical joke, still cooking gourmet dinners for all of us, still complaining about bad drivers and traffic jams … still Mike.

But we have the most backward system anywhere in the so-called developed world, a system that killed 45,000 or more Americans each year in 2008 — a half million since it robbed me of my son.

The Affordable Care Act stemmed the tide a little for a few years, but we made the mistake of leaving insurance companies in charge, and they have perverted the system to their advantage with $6,000 deductibles. According to ehealthinsurance.com, in 2018, the average deductible was $4,328 for an individual and $8,352 for families.

Nearly three-quarters of employer-sponsored plans have deductibles of $1,500 or more, and the average family spends about $20,000 per year on health care costs. With more than 40 percent of Americans saying they can’t pay a $400 surprise bill without borrowing money, it’s hard to imagine how any but the wealthiest Americans can say they love their insurance plan.

That’s the “progress” we’ve made toward a more just and equitable health care system in the 12 years since I promised my son I would fight for access to health care for every human being. In fact, a new study from Yale University places the annual death toll at 65,000-plus, which means an American dies once every eight minutes.

I remember pieces of that day so clearly. I remember the shock of seeing how much weight he had lost in the few weeks since I had seen him last. I had trouble catching my breath.

I remember my daughter-in-law coming over to Mike’s place (they had been forced to split so he could get Medicaid here in North Carolina) and I remember his best friend and roommate, James, telling me of his fear of coming home from work and finding Mike dead.

After we had spent a couple hours with Mike, we checked into our hotel. My husband took a nap, and unable to even think about sleeping, I walked over to the electronics store across the street from the hotel. I was looking at photo printers, wondering how to connect them to my computer. As always, I thought Mike would be able to answer any questions I had about it, and then I realized he would be gone soon, and I almost fell to the floor. I don’t remember the walk back to the room, although I do remember how cold it was, and that I didn’t have a warm jacket with me.

I went to Target to get an inexpensive jacket — a red Converse zip-front hoodie — and I saw an exasperated mother with a fussy toddler. I wanted to stop and tell her how precious that child was, even though he didn’t seem so at the moment. I wanted to tell her to hold him close and love him because he could be taken from her by a system that preys on people rather than cures them.

I kept walking instead because I didn’t want to look like a crazy woman.

I’ve been working on this a dozen years and we are no closer to health care justice than we were when my son’s heart stopped.

I am the family member of just one of more than a half million corpses from this carnage, and every one of us has to live with this indescribable pain. I wouldn’t wish it on anyone — not even on the policymakers who allow it to continue, unabated, or to the corrupt insurance company executives who bribe policymakers to leave them in charge of such an immoral system.

I want desperately to see change. I want to see an end to these unnecessary deaths that rip families apart day after day after day — one every eight minutes.

So, stop telling me we need to get there gradually — it’s been too gradual already, and for every eight minutes we delay, another body is added to the count.

You want to call yourself “pro-life” or even moral? Stop supporting politicians who say we can’t afford to care for everybody. We can afford it, and we must.

It is 12 years past time for my precious son, and my pain is as terrible today as it was on this day 12 years ago.

I will never get over it.

I will never move on, not until every human being has full access to quality care.

The least we can do is listen to each other

I offered Pete Buttigieg a photo of my late son to remind him that we need to fix health care now. He accepted the photo. I hope he looks at it now and again and understands the urgency.

The first thing I noticed about Mayor Pete Buttigieg is that he’s not much taller than I am and that I probably outweigh him, unless his bones are made of lead. I could whup him in a fair fight — if I weren’t committed to nonviolence.

He came into Greenleaf Christian Church on Sunday and took his seat in the pew cross the aisle from me. He struck me as humble. He smiled at the people around him and waited for the service to begin.

He looked a little overwhelmed as his Episcopalian sensibilities were rocked by the jubilation of worship at Greenleaf, a church led by a black pastor but with a diverse membership of people of all races, from all kinds of backgrounds, gay and straight, able-bodied and with disabilities, rich and poor. But as the singing continued, he smiled and eventually got to his feet and clapped and rocked with the rest of us.

Mayor Pete had been invited to speak and answer questions at the Poor People’s Campaign Moral Congress in June, but had been unable to attend. When Rev. Dr. William Barber II, co-leader of the Poor People’s Campaign, invited him to answer the same questions as the other candidates fielded, Mayor Pete, accepted.

I never got the sense that this was a dog and pony show, produced to make us believe Pete Buttigieg is the answer to all our prayers. He sat through a two-hour service, sang with us, listened to the sermon and seemed to enjoy it.

I never got the sense that Rev. Barber wanted to promote him or tear him down. The Poor People’s Campaign is political in that it works to change the public policies that impoverish people, but it does not endorse candidates.

Rev. Barber has no problem with Mayor Pete’s (or anyone else’s) sexuality. Instead, he explained why sexual preferences and/or identity aren’t important to him.

“I don’t ask an airline pilot if he’s gay,” Rev. Barber told Buttigieg. “I ask whether he can fly the plane. I don’t ask a surgeon whether he’s gay, I ask whether he can do the operation.”

I don’t agree with Mayor Pete on some of the issues, but he appears sincere in his desire to serve and to try and tackle some of our biggest problems.

My problem with his policies is that he’s advocating incrementalism in the minimum wage and in health care, and I’m done waiting.

People who make $7.25 an hour — less than half of what it actually takes to live in any county in the nation — deserve to have relief now, not in four years, because by the time a $15 an hour wage is phased in, living wage will be $20. It’s not a matter of waiting patiently to be able to feed your family, it’s a matter of economic justice. People need relief NOW. So, how about we redirect a small percentage of our bloated “defense” budget to subsidize small businesses and nonprofits for a couple of years instead of making the poor wait?

So, I’m sorry, Mayor, but we need better on wages.

We also need immediate action on health care. A single-payer system was advocated by Theodore Roosevelt more than a century ago. I think that’s long enough to wait.

My patience left me with the unnecessary death of my son in 2008, and it has not returned as the death toll continues to mount — a half million Americans dead since my son’s heart stopped beating.

I was privileged to talk to him about health care for a minute. I told him about my son as Mike’s picture appeared on the screen. I told him a half million people have died since I had to do something no parent should have to do — bury my child.

I wanted to ask him, “Isn’t that enough? If not, when will it be enough? After we lose another half million? “

Instead, I stuck to the script and gave him the facts on what’s happening here in North Carolina, whose legislators have steadfastly refused to expand access to health care to a half million of the poorest people in our state. Three of them die every day. I asked him what he plans to do to assure every human being on American soil has access to health care.

His answer was a public option that would allow the wealthiest among us to keep insurance companies in business and in control.

He did say that if someone shows up sick and isn’t insured, that person will be enrolled, retroactively, in the public plan.

“Everyone will have insurance,” he said.

My problem is that as long as these greedy, immoral thugs are allowed access to our health care system, they will continue to work to pervert it to serve their needs, not those of the people. We can’t allow them so much as a foot in the door.

Health insurance companies need to be banned. For-profit providers need to be banned. Health care should never, ever, ever be for-profit because profit-mongers will always find a way to deny people what they need to make a few more dollars of blood money.

At the end of the event, Mayor Pete came over to shake my hand and say how sorry he was about my son.

“You’ve already been graced with four more years of life than he got,” I said. “So, if you would like, if you think being reminded of how bad things are in our health care system will help you move us forward, you can take my photo of him with you. Look at it. His name was Michael and he was dearly loved.”

Mayor Pete reached out and took the photo, thanked me and then stood for a moment looking at it.

I believe he’s sincere, and he wants to, as he put it, “be useful.”

I want him to be more bold. I want him to stand up to the immorality of the 1 percent and say we need to address these issues now, and not some unspecified time down the road.

I am glad I met him. I found him intelligent and sincere in his desire to address these problems; I just want him to be more eager to get it done now.

When I put a photo of Mayor Pete on my Facebook feed yesterday, it blew up with people being disrespectful. That really bothered me. To me, when someone reaches out and wants to talk, I want to listen, even if we disagree.

There are people who don’t deserve my respect and one of them is squatting in the Oval Office right now; another leads the Senate, and still more of them are in our courts and legislatures. They spew hate and seem to enjoy the cruelty of racism, poverty, the war economy and ecological devastation for profit. These people don’t deserve respect.

On the other hand, someone who is well intentioned, but with whom I disagree, I will treat with respect.

Perhaps being a reporter and having to treat people with whom I disagree vehemently with respect taught me to listen better, to understand that the only person who agrees with me on everything is me.

I still will not vote for someone who won’t support Medicare for all in the primary, and I’m not sure what I’ll do in he general election.

But I liked Mayor Pete personally. I believe his desire to turn things around is sincere. I also think he might come a little closer to my views with time and maturity.

I had one prayer going into yesterday’s event: that we might move him toward a vision of a better nation, a more just nation, and that he might drop his incremental approach to racial, social and economic justice.

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