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.

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.

Two more days

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.

Ten years ago today, we had a dozen or so people in the house. Along about mid-afternoon, Mike was napping and I was just getting out of the hot tub and drying off when the doorbell rang. I opened the front door to find a very angry woman standing on the steps.
“What the hell is going on with all these cars on my street!” she demanded. “What makes you think you can clog up my street with all these cars? I have to get in and out of here, you know and this is a menace!”
I listened for a moment as she ranted, a couple of my friends standing behind me in utter disbelief that someone could be so nasty without asking what was going on before launching into attack mode over cars on “her” street.
“Excuse me,” I said finally. “These people are here to say goodbye to my son. He’ll be dead in a few days and you can have your precious road back, although I’ve been led to understand you don’t own the road, we all do.”
Her jaw dropped.
“Oh, I’m so sorry.”
“You should be.” I started to close the door.
“Wait! Is there anything I can do?”
“Yes. You can drive carefully. None of us needs to add a wrecked car to our grief.”
A half hour later, Mike woke up and I told him about it. He burst out into a belly laugh. He always loved it when rude people got put in their place.
That would be his final belly laugh.
That evening, all our company would leave and it would be just me and Rob and Mike. James and Janet went back to Raleigh to take care of things there and would come back Wednesday.
Janet would lose her job because her boss said she couldn’t have any more time off. James’s boss would allow him the time he needed to say goodbye to his best friend.
Rob’s and my boss, Randy Hammer, had told us to take whatever time we needed.
Randy had told me a few days earlier he was praying for a miracle, and I told him that was nice. I did appreciate the prayers, I said, but there wasn’t going to be a miracle and I would appreciate it even more if he would pray for strength for those of us who were left behind.
He was a little shocked that I would give up, but I had to be realistic. I didn’t want to have false hope. In my mind, praying for a miracle just means you’re not good enough to get one when it doesn’t happen.
The people in my childhood church always blamed the victim for not praying hard enough or not believing enough when no miracle happened. I won’t fall into that trap. If anyone deserved to live, it was Mike. He was kind and generous, smart and funny. But he would die because he didn’t have insurance and he didn’t have a doctor who gave a rat’s ass about him until it was too late to save his life. He would die, just like 45,000 other Americans that year because our health care system is broken and the powerful people who have all they access they need are too greedy and corrupt to fix it.
Even now, 10 years later, Republicans’ first question on hearing his story is, “Was he working?” As though we have criminalized poverty to the extent that we believe all poor people are lazy, as though unemployment should be punishable by death. And when I say that, the response is always, “Well, some people just want a handout.”
No. Nobody wants a handout. I’ve worked with people in poverty in one way or another for more than 30 years and I’ve never met anyone who just wants a handout. Not one soul. What people want is to live in dignity, working and being paid enough to meet basic expenses in exchange for a week’s work. People want access to health care, a decent education, safe housing, healthy food, clean water — and they should all have these basic things.
For the final three years of my son’s life, he lived in abject poverty because he had to leave his wife to be eligible for Medicaid and it took 37 months to approve the disability payments he had earned over 18 years of working, and his first check didn’t come until nine days after he died.
On this beautiful spring day 10 years ago, we had just two more days with him; 48 hours to soak up enough of his spirit to last a lifetime.

What a devastating day

This is my son, Mike, who paid taxes right up to the time he got sick. After his Stage 3 colon cancer was diagnosed, he became one of the people Mitt Romney doesn't care about.

This is my son, Mike, who was so impoverished by the time he died that he left behind very few belongings. One of those was stolen last night.

I have very few things that belonged to my late son, mostly because our broken system impoverished him to the point that he had very few belongings.

This morning, I found that one of them, his iPod, had been stolen from my car. I bought it for him a few weeks before he died because he had always wanted one and we didn’t know whether he would survive to see his first disability check.

As it turned out, he didn’t. He was dead nine days before that first check arrived, but at least he’d had the chance to enjoy that iPod for a few weeks.

All day, I have felt his loss anew, a stabbing grief that won’t go away. His photos were stored on that device and it was in a compartment in my car, together with a charging cord.

The thief also got away with a projector that belonged to my nonprofit, WNC Health Advocates, a Bluetooth speaker and some other odds and ends, altogether about $1,000 worth of stuff.

When I reported it at the Sheriff’s Department, the deputy behind the glass acted as though I had invited the thief in and handed him my belongings because the driver’s side door was unlocked.

“What are you doing with a thousand dollars worth of stuff in your car, anyway?” he asked, scowling at me.

Not only did I feel violated by the theft, I was blamed. I was the person at fault.

I was left wondering if I would have been so shamed and blamed if I had been a man.

I was so upset, I came home and called Sheriff Van Duncan, who apologized profusely for the way I had been treated.

Meanwhile, I have struggled to hold back tears all day. This is more than a loss of a thing — that thing was connected to my beloved son, and it’s one less┬áconnection I have as the days since I last was able to touch him and hear his voice add up.

I left a profane post on Facebook after I discovered the loss, but I know I won’t see that iPod, or the photos he had stored on it, again. The f-bomb helped for a fraction of a second, but it would help more if I could find the person responsible and explain what that small thing meant to me. My first impulse would be to smack him (or her) upside the head, but I wouldn’t actually do that because physical violence never solves anything.

But I would like that person to understand they pain their actions have caused.

It’s bad enough I have to face the rest of my life without my son, but can’t I at least have this one small connection to him?