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

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.

It’s my vote, not yours

We can’t afford to do this anymore. It’s time for Medicare for all.

I’ve taken a lot of criticism lately for saying I won’t vote for anyone who doesn’t support a single-payer health care system.

Here’s the thing: You don’t get to decide who gets my vote, not in the primary and not in the general election.

I have good reason for my position. I call it the Dead Kid Card (only because that’s what my son called it before he died from lack of access to health care). I suffered a loss most parents only have nightmares about. I sat beside my precious child as he breathed his last, and his cause of death was neglect for profit.

My son should not have died, nor should any of the half million people who have been murdered by our profit-driven “system” since his heart stopped beating.

Universal access to care was proposed by Theodore Roosevelt more than a century ago, and we’re still waiting. The rest of the world has found ways to do it, but we still prostrate ourselves before the altar of profit. We spend twice as much per person as any other system in any advanced nation, and our outcomes are always the worst among the industrialized nations. Hell, Cuba has better outcomes than we do, and that’s because everyone has access to the care they need.

I’m not willing to wait any longer. I believe enough people have died, and it’s time to stop the unnecessary deaths so some insurance executive can take home another few million dollars and stash it in an overseas tax-sheltered account.

Health insurance companies are parasites. They add nothing of value to our system, but they suck billions of dollars out of our economy, and they deny lifesaving care that causes the deaths of tens of thousands of people every year.

OK, so now you’ll argue that some people love their plans. Well, I have a couple of problems with that. First of all, Medicare for all will get care to everyone, not just the few well-to-do people who have their access to care but don’t even think about people who have little or no access. That’s called selfishness, or greed. Remember, Jesus never said, “I got mine, get your own.”

Secondly, we know that 70 percent of employer-sponsored plans are high-deductible — meaning you have to spend $1,000 or more before you see a penny in coverage — The average deductible is $3,000. This is in a society where nearly half of the people say they can’t pay a surprise bill of $400 without borrowing money.

No one can make me believe that most Americans love their health insurance in light of those statistics.

And it’s getting worse.

According to a study by The Commonwealth Fund, (https://www.commonwealthfund.org/ ), median household income in the United States between 2008 and 2018 grew 1.9% per year on average, rising from $53,000 to $64,202. But health care costs rose 6 percent per year in the same time, and the Affordable Care Act has been in effect for about half of that time.

“The most cost-burdened families live in southern states,” said Sara Collins, lead author of the report and vice president for health care coverage, access and tracking at The Commonwealth Fund.

In general, those states tend to have lower median incomes, so even if the sticker price for premiums and deductibles is lower than in higher-income regions, health insurance costs take up a greater share of Southerners’ income.

The next argument I get is that people who work for insurance companies need their jobs. Well, jobs administering Medicare will be plentiful. Even managers will be needed, although the CEOs who have been skimming billions in our national treasure can go and live on their blood money because they won’t be stealing any more from us.

The longer we wait to do this, the worse things are getting, as for-profit companies take over health care systems, especially in rural areas.

Rural hospitals are cutting services or closing altogether, especially in states that refuse to take the federal Medicaid expansion money that their citizens are already paying for. Here in Western North Carolina, women in labor have to travel up to two hours to get to a labor and delivery facility. Ambulance rides can cost up to a whopping $40,000. People are dying because they have to call an Uber because they can’t pay for an ambulance.

Under the current administration, the Affordable Care Act’s protections have been weakened. Premiums and deductibles have skyrocketed. Since the mandate that everyone buy insurance has been lifted, people of moderate means have dropped their coverage so they can afford to pay for food and shelter.

Meanwhile, plans have become more and more restrictive, putting drugs and care on tiers so that if a doctor comes to see you while you’re in the hospital and they are not on Tier 1 in your plan, you could be faced with thousands of dollars in uncovered care. That lifesaving antibiotic could wind up costing you $300 per pill.

So, when I hear a candidate say we can wait for Medicare for all, my response is, “Nope.”

Our corporate overlords may not care if you die from lack of access to care, but I do.

I will not vote for someone who thinks people can wait for health care, and you have no right to tell me I have to. People are dying NOW, and we have to fix this NOW. I really don’t care if the rich don’t like it. They’re not the ones I’m worried about.

My vote will ONLY go to someone who’s ready to fix this.

Stop denying your privilege. It’s truly offensive.

Last night, somebody shocked me by telling me I was talking “nonsense” when I insisted out current health care “system” is broken, and that we have to move to single-payer.

“We need to preserve our system,” she said, and proceeded to try and shame me into supporting Joe Biden or another “moderate” who’s beholden to the profit-mongers currently in charge.

I was appalled that anyone knowing how I lost my son to this mess would say that to me.

I told her she was talking privilege.

She has the privilege of being covered by an insurance plan she can afford, co-pays, deductibles and all.

She has the privilege of not needing immediate help that’s just unavailable because she can’t afford it.

She has the privilege of not having watched someone she loves more than life itself draw his last breath because nobody would help him.

She has the privilege of being able to wait for politicians get off their asses and do something about the 35 million Americans who have no insurance, and the millions more who have insurance with a deductible so high they can’t afford to use it.

She claimed she has no such thing as privilege, that she just wants people to be able to get health care.

But she can’t see that tens of millions of Americans are going without while she calls me stupid for wanting them to get immediate access.

She probably thinks we can wait a few years for the minimum wage to hit $15, too. But if you’re making $7.25 an hour, you can’t wait for that raise. You need that money now. If you think otherwise, your privilege is showing.

If you hold the people at our borders in contempt because they walked a thousand miles with their children to escape drug gangs — gangs that are the direct result of US drug policy — your privilege is showing.

If you think our policy of incarcerating people — non-citizens or citizens — in private, for-profit prisons, not feeding them enough (I know about conditions in private prisons because my brother is in one) and then “contracting” their labor out to the highest bidder, your privilege is showing.

If you think the people in Flint and other cities with lethal contaminants in their water can wait for it to be fixed, your privilege is showing.

If you think it’s OK to keep somebody in jail for months as they await trial for a nonviolent misdemeanor like falling asleep on a park bench, causing them to lose their jobs, housing and even their kids, just because they can’t come up with $250 cash bond, your privilege is showing.

If these things and other atrocities perpetrated by the fascists in Washington are OK, it’s because you have a warm bed, clean water, access to health care, reliable transportation, enough food — in other words, privilege.

If you think poor people are just lazy and only want a handout, your privilege is showing big time.

And if you’re white and male and you don’t see any problem with the way things are, you’re particularly privileged.

When you have such privilege and you deny it, I find that deeply offensive. When you call me stupid because you can’t see your privilege — even when it’s pointed out to you, you are even more despicable to me.

When you have such great privilege and you deny it, you are willfully ignorant, and there are few greater sins in my book.

I know it’s hard to recognize our own privilege, but we must if we are to move toward a just society for everyone, not just for you.

No more gradualism, no more excuses

New York Times photo

A “friend” came onto my Facebook page yesterday to explain to me why we need to fix health care gradually.

The first thing I did was ask whether she thinks a century is gradual enough, since it was Theodore Roosevelt who first proposed a single-payer health care system more than 100 years ago.

But then I thought about it and removed the post — and the friend.

This is a person who knows I lost my son to this broken system. Her post was immensely disrespectful, and before I removed the post, I asked whether it would take the death of a child of hers to make her understand how misguided her post on my timeline was.

And in the 11 1/2 years since my son died, another half million Americans have died the same way. That’s right, 500,000 — 45,000 a year, year in and year out. The Affordable Care Act helped for awhile, but now 70 percent of employer-sponsored plans have a deductible of $1,000 or more — some as high as $6,000 — not to mention co-pays and out-of-network charges. Even plans on the exchange are pricey unless you have a large subsidy. The year before I went on Medicare, my premiums were $1,300 for just me and the deductible was $3,000. My co-pay to see my regular doctor was $40, and a visit to a specialist was $75. When I needed outpatient surgery for a kidney stone, I was responsible for more than $6,000 of the $13,000 bill. And this was before our local hospital was sold to a for-profit corporation.

No one has studied how many insured Americans die because they can’t afford that kind of money. Remember that a recent survey showed the majority of Americans can’t afford an unexpected $800 expense. Since most deductibles now are more than $1,000, where does that put the average family?

I’ll tell you one thing, it puts them in a place where they can’t afford health care. Sure, they’re able to get the colonoscopy or the mammogram, but if it shows any irregularity, now what? Can you afford the tests? How about the treatment?

Nearly half of cancer patients have to wipe out their entire life savings for treatment — and that’s with insurance. One in three will go bankrupt.

Once every 12 minutes another American dies from lack of access to health care. I’m betting their families would rather not have waited for reform.

If you think you need to tell me why we should wait to fix health care, do me a favor and restrain yourself. I’ve heard all your arguments and I don’t need to hear them again. It only re-opens the wound of my son’s unnecessary death again and again and again.

I understand that you don’t know what it’s like to watch your child breathe his last, and I hope you never do. But you need to understand that hearing you say we can wait for health care means you don’t give a damn about any of these deaths, even though you say “I’m sorry for your loss.”

If you come onto my timeline to tell me why we can wait, you are most assuredly not sorry for my loss, or for anyone else’s.

I think enough people have died, and you’ll never convince me it’s OK to let more people die.

I think your excuses are lame, and a lot of them are lies designed to keep the oligarchs in charge of our health care.

I think you’ve probably not lost a child to this mess, and I sincerely hope you never do.

And I still think we need to fix this now. There are no more excuses.

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

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

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

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

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

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

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

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

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

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

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

Meanwhile, we contemplate war on Iran.

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

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

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

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

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

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

No. No to all of it.

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

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

Every day we wait, dozens more people die.

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

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

Every day we wait, we edge closer to extinction.

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

One final belly laugh

Mike being Mike. His main mission in life was to amuse himself and others. He was a proud jackass and I still believe he chose to leave us on April Fool’s Day.

 

It was Sunday on this date 11 years ago. The crew from Savannah spent the morning and early afternoon with us, and when Mike was tired and needed a nap, they headed back south.

I took the opportunity to soak in the hot tub for a bit with two friends who were helping Mike plan his memorial service. He didn’t want to leave anything to chance. That service would reflect his desires for a funeral he’d be sorry to miss.

As we came back into the house, there was an insistent knock on the door, as though someone wanted to deliver an urgent message. When I opened the door, there was a woman I’d seen drive by a couple times, but I didn’t know her. She was tastefully dressed, a little overweight, had an unnatural shade of blonde hair and way too much makeup.

“What the hell are you doing parking all these cars on my street!” she demanded. “People have to drive here, you know. You don’t own the street and I’m getting tired of dodging all these party cars! I don’t know how long you’ve lived here, but you should know we don’t put up with that in this neighborhood …”

She ranted on for a minute or two and when she finally stopped to take a breath, I spoke.

“First of all, this is not your street. My taxes pay for as much of it as yours do,” I said.

She opened her mouth to speak again, her face still angry. I held up my hand.
“Nope,” I said, “I’m not done. These cars belong to friends of my son. They’ve come to say goodbye. He’ll be dead in a few days and then you can have your road back.”

I started to close the door and she put up her hand to stop me.

“Wait! Oh my god! Is there anything I can do?”

“Yes,” I said sweetly, “you can drive carefully so none of these people has to the add the burden of car repairs to that of the grief of losing a friend.”

And I closed the door.

Even 11 years ago, some people were mean-spirited by nature and not afraid to show everyone they encountered that they wanted people to do everything their way.

Later another neighbor would see me outside and ask, “I saw a lot of cars over the last week or so. I know it’s not always a good thing, so I just said a quick prayer that everything’s OK.”

Now, that’s the way to ask why there are so many cars parked on the street.

The nasty neighbor has never spoken to me again.

Mike woke up a little while after the angry neighbor left, and I told him what had happened. He had a good laugh over that.

“Oh, I wish I could have seen her face,” he said. “I’ll bet she was horrified. Good for you, Mom. Good play.”

It would be our final Cancer Card moment, his final belly laugh.

In 48 hours, he would be gone and I would never hear that laugh again.

When people tell me we should fix health care gradually so businesses and the economy don’t get hurt, I ask why they want to put the welfare of corrupt insurance companies and Big Pharma over that of the 35 million Americans who still don’t have access to health care, plus another 12 million or so whose insurance has such high co-pays and deductibles that they can’t afford to use it. That, after all, is the very basis of fascism — money over people, the good of corporations above the welfare of human beings.

Some 30,000-plus people are dying every year the same way my son did. and we have done almost nothing.

Yes, insurance companies can’t deny people with pre-existing conditions insurance anymore. In states where Medicaid has been expanded, poor people finally have real access to care.

But Big Insurance and Big Pharma don’t want these changes to stand and they’re paying out huge amounts of money to walk back what little ground we have gained.

Every day we don’t fix this, people die unnecessarily. Every damn day, more family members and friends go through the hell my family and I have gone through. In fact, about three times every hour, another American dies of lack of access to care, just they way my precious son did.

As I count down these days again every year, I spend a good part of my time in tears.

Why can’t we see that people shouldn’t be dying like this when it would actually be cheaper to take care of them — both economically and morally? I tried to explain this to someone yesterday who just said, “I don’t believe you. We can’t afford it,” and turned her back, completely unwilling to listen to anything not sanctioned by the liars at Fox News. I wanted to scream, to call her a fucking fascist, but I walked away instead.

On this beautiful spring day 11 years ago, I so desperately wanted to hold onto him. I still wish I could go back and get him. I think I’d want to take him along on the coming cross-country road trip with my pregnant granddaughter. I can’t even imagine what an adventure that would have been.

I tried to soak up all I could of him during these final days.

On this Sunday 11 years ago, everybody cleared out. James, Mike’s closest friend, and Janet, who still loved Mike and who was still adored by him, went back to pick up mail and check in with their bosses. Janet’s boss would fire her for not coming in on Monday; James’s boss told him to take whatever time he needed. They were both planning on returning Wednesday. Mike would not be here to greet them.

On this beautiful Sunday 11 years ago, we would have just two days left with Mike.

 

My vote is reserved for someone who will fix health care

Mike being Mike. His main mission in life was to amuse himself and others. He was a proud jackass and I still believe he chose to leave us on April Fool’s Day.

Eleven years ago today, hospice came.

Mike had slept in the bed in the spare bedroom that first night here, but the nurse said he’d be more comfortable in a hospital bed, and she had one here in a couple of hours. She was right. You could see it on his face as soon as he settled in, raised the top and picked up his game console controls.

Part of the visit was an intake interview.

“Do you use tobacco?”

“Yup and I’m not quitting now.”

“Do you use drugs or alcohol?”

“Not for the last 11 and a half years.”

“Good for you! What was your drug of choice?”

Mike leaned closer, his eyes sparkling. “Whadaya got?”

He got the reaction he wanted, a shocked look.

“I was whatcha call a garbage head,” he said, smiling. “I would do anything that altered my brain in any way.”

Mike had sobered up on Nov. 9, 1996, and he had worked with 12-step groups in New York, Savannah and Raleigh. He often went to beginner meetings because he knew people new to sobriety needed help.

“As soon as you smelled fryer oil, you knew the meeting was going to be a good one,” a friend of his told me. “He would come right from work, and he was so wise, so compassionate. You just knew if he was there, something good was going to happen.”

Anyone who needed to talk knew they could call Mike and he’d listen. No matter what time of day it was, no matter how much he had going on, he always made time for someone who needed to talk.

I was feeling pretty smug because I believed I would die when he did. Yes, I know there’s nothing logical about it, nothing even remotely logical. But I had somehow convinced myself that I wouldn’t have to go on without him. And yes, I had another son, two fabulous daughters-in-law, a loving husband, four grandchildren and sisters and friends. That didn’t matter to me.

Mike was born on my birthday, and he and I were so alike, we often didn’t need to talk, although we always did. He had my sense of humor and my passion for justice.

We had long, rambling conversations about everything imaginable, although he could lose me in the weeds when he got into philosophy.

And he was particularly delighted when he could combine philosophy and wise-assery. He knew every word to Monty Python’s Philosopher’s Song, not to mention “Every Sperm is Precious,” and “Always Look on the Bright Side of Life.” He could recite huge swaths of dialogue from Monty Python and Mel Brooks movies. In fact, he and his wife’s stepfather used to put on German helmets from Bob’s extensive military artifacts collection and sing, “Springtime for Hitler,” from “The Producers.” They invited me to sing along, but I just couldn’t bring myself to put on a German helmet and join in. It was too much fun watching them.

Mike was a foodie who loved working in restaurants except for the lack of health insurance. He went back to school because he knew he needed another career, and he had chosen law. He was planning to be a legal aid attorney, and he would have been a damn good one.

But our broken health care system derailed his plans. It shouldn’t have. We have dozens of models for a just health care system from every other industrialized country in the world. But corporations have more power than people do in this country. They have co-opted our democracy to suit their needs, and they have used every immoral method in their playbook to maintain a stranglehold on progress of any kind.

The Affordable Care Act would have gotten my son the insurance he needed, although it might not have covered annual colonoscopies because the insurance companies have maintained control, with the full cooperation of both corporate-owned political parties.

Somewhere near a half million people have died in these last 11 years. I think that’s enough already.

Condemn me all you want for my hard-ass stand, but I will not vote for anyone who won’t support the Medicare for All bill that would have everyone covered within three years. That’s my line in the sand.

This is a national emergency and it’s long past time we treat it as such.

If the creature currently squatting in the White House steals another election because the Democrats won’t give us a viable alternative, then we as a nation get what we deserve. I will not accept any blame. I played along once and the DNC rigged the primaries to get their flawed candidate on the ballot. I dutifully voted for her.

I bought into your “anything is better than that clown” line in 2016. Now, considering that the definition of insanity is trying the same thing again and again and expecting a different outcome, I would say anyone who falls for that again is the fool, not those of us who refuse to do so.

Some 70 percent of voters want this. Even 52 percent of Republicans are on board. This is not an unreasonable demand and I will not back down again. You will fix this, Democrats, or you will go down with the Republicans and it won’t be pretty.

I have had to live these last 11 years without my precious son. I miss him every moment of every day and the pain I feel constantly won’t let up until I join him.

There are a half million people who have landed in this boat with me since my son died. It’s time for action.

 

 

 

 

 

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