Ten years later, we’re still not getting health care to people in need

Ten years ago today I brought my son home to die.

It seems like so much longer than that since I’ve heard is crazy laugh or heard him cuss.

It seems like yesterday when I realize that the pain is still as fresh as ever.

His doctor had told him two weeks earlier that if he didn’t start putting weight on, it would be clear that the chemo wasn’t working. They wanted to see him gain 2 pounds. That’s all, just 2 pounds.

I had gone to Duke Chapel to pray for those 2 pounds, telling God in the middle of this opulent place that 2 pounds wasn’t too much to ask, was it?

I also knew it might not happen. I knew my son’s days were limited, but I wanted as many days as I could have. As I sat in that beautiful place, I began to think about what would be after he was gone, what I would do in the midst of unimaginable grief. It was there that I began to think about how I might work toward a public policy that meant other mothers wouldn’t have to endure the pain I was facing. I feel as though my mission began in that sacred space.

If my son had gotten the care he needed, he wouldn’t have developed cancer. If we had lived in any other developed nation in the world, my son’s medical needs would have been met. This needed — still needs — to happen here.

As we sat in his living room before going to the chemo appointment, he looked at me and said, “I’m ready for this to be over.”

I was not.

But when we got to the clinic and he stepped on the scale, he had lost another pound.

“I tried,” he said, fighting back tears. “I really tried.”

We had fought this cancer for three years. The hospital in Savannah, Memorial Health System, had nearly killed him three times in the first year, and Dr. Herbert Hurwitz had taken him on at Duke University Medical Center and worked as hard as we did to try to save his life.

He was (and still is) accused by some of being lazy and wanting a handout because he didn’t have health insurance and couldn’t afford to pay tens of thousands of dollars for his care.

He was treated in Savannah as someone who didn’t deserve care. It felt as though his very humanity was being denied. His surgeon was so obvious about his lack of concern and caring that I was tempted to slap him, and I am committed to nonviolence. I did drop the F-bomb when the doctor said they wouldn’t do any more to save him except “maybe a little chemo.”

He had been forced to leave his wife and depend on others to pay his bills as he waited 37 months for the disability he deserved. He was dead nine days before the first check came.

But until this day, we’d held out hope that we might be able to save his life. Even if he was to work to pay off his medical bills into his 80s, we hoped we could keep him with us.

Today, a Tuesday in 2008, was the day we learned there was no more hope. My son was facing death and I was facing life without him.

As we left the clinic, I was pushing Mike in a wheelchair because he was too weak to walk to the parking garage. He turned to me as we entered the parking garage.

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

“Oh, God, I hope it’s more than that,” I said. I was talking to God as much as I was answering my son’s question.

I called his dad to tell him the news and he began sobbing.

“There has to be something we can do,” he said. “I survived colon cancer, I thought he would, too.”

“You had the best care money could buy,” I said. “You got to go to the Mayo Clinic; Mike was relegated to a backwater health clinic with people who held him in utter disdain because he couldn’t pay. Your lawyer got you disability in three weeks; Mike’s still waiting after three years. What the fuck made you think everything would be OK? His experience was the exact opposite of yours and you were never even aware enough to see that through your privilege. I’m sorry, but I don’t want to hear this from you.”

We stopped at his apartment, where his roommate, James, and my daughter-in-law were already waiting. They helped me load his few belongings into my car and promised to follow us within a few hours. Mike took an extra dose of pain pills because the four-hour ride would be extremely painful otherwise. He had resisted using pain meds, but his medical team had finally convinced him he deserved to have relief from the constant pain.

We had to stop halfway home to get a memory foam pillow because he had no fat left on his backside and he was uncomfortable. We bought a walkie-talkie so he could call us whenever he needed anything, and we took turns with it so someone would always be on Mike duty.

We didn’t know how much more time we would have with him on this day 10 years ago, but we were determined to soak up every moment we had left to us.

Ten years ago today, I brought my precious son home to die. We would have just 14 more days.

It seems like forever. It seems like yesterday. I still miss him to the very depths of my soul.

No one should have to die the way he did. No mother should have to watch a child die the way he did.

Ten years into this grief, I rededicate myself to the mission. I will fight for universal access to quality health care. I will fight until we achieve health care justice or I will die trying.

I will not stop. I will not shut up. I will not go away.

 

 

The tarnished tiara

A little like the tarnished halo I envision my son wearing.

Today is my 65th birthday. It would have been my son’s 43rd.

This is the 10th birthday I have celebrated without him. I thought about that as I lay in bed at 8:30 this morning, the time he entered the world 43 years ago.

He enriched not just my life, but the lives of pretty much everyone who knew him. He was smart, wickedly funny and kind. He was also a self-proclaimed jackass, as were his two best friends, James and Christian. The three of them together created a shitstorm of hilarity — unless, of course, jackass was not your thing.

Michael spoke his first word at 7 months. It wasn’t Mama; it was mouse. See, he had this little squeaky mouse and he dropped it. I picked it up and gave it back to him and he said, “Mouse.” Clear as day.

I thought he couldn’t actually be saying mouse because he was seven months old, but he dropped it again and again, and each time I handed it back, he said it again.

He pretty much didn’t stop talking after that. He drove his teachers nuts. He distracted everyone else in the classroom. But, in his defense, he was bored. The teachers who allowed him to read books years ahead of the abilities of other kids his age were the ones who got a little peace.

Mike, age 6.

When he was in the fourth grade, a teacher took away the collected works of Edgar Allen Poe because she thought it would give him nightmares. I had to call her and try to explain his tastes in literature to get the book back.

I got calls at least once a week about how he was being disruptive in class, and each time, the teacher had insisted he just do the work his classmates were doing. Well, if he finished the assignment in five minutes and the rest of the class took 30 minutes, that’s 25 minutes for him to be bored and trying to find ways to amuse himself.

As I said, the teachers who found him something to do were the ones who got a little peace and quiet.

When he was in fifth grade, they forced me to put him on Ritalin. He hated it, I was against it, but the school district threatened to call child protective services and report me for being neglectful. I was afraid they’d try to take him from me, so I allowed it.

A couple of months later, Michael came to me and said he hated the medication, that it make him feel like “not-me.” So we made a deal: He would contain himself. He would be conscious of his impulses and not let the teacher know he hadn’t taken his medication, and we would see how long he could fool them. It was three months, and in that time, an attorney friend of mine said she would fight the district for me if they tried to force the medication on us again.

When the teacher called and said, “Someone forgot his meds this morning,” I was able to tell her it had been three months since he had taken a pill and we would not allow them to force us into medicating him again.

The solution, of course, was to allow him to read in class when others were finishing their work, and he read science fiction novels.

But in his adolescence, he turned to drugs and alcohol. He said years later that the Ritalin had been the gateway drug, the thing that turned him onto mind-altering substances. I don’t know if that’s true, but he believed it.

He sobered up when he was 22, and he spent the remainder of his life helping other people get and stay sober. He saved lives, but there was no one with the ability to do it who would move to save his life when he couldn’t buy insurance at any price.

His doctor wrote in his medical record, “Patient needs a colonoscopy but can’t afford it.”

Later, when the symptoms started, he went to the emergency room three times. But the ER only has to stabilize you, and he left with the wrong diagnosis and the wrong medications three times. A doctor finally agreed to do a colonoscopy, but he didn’t tell Mike that his colon was entirely blocked. He just sent him home and wrote in the record, “couldn’t complete procedure. Next time use peds scope.”

I couldn’t get an apology for that from Memorial Health in Savannah, where the doctor is on staff. An apology was “too much to ask,” even when I offered to sign a written promise not to sue.

My son was a remarkable human being. Through three years of pain and suffering, he never lost his sense of humor — and he maintained his sobriety.

Mike had an incredibly foul mouth, and my penchant for dropping the F-bomb likely is just him channeling through me. (That’s my excuse and I’m sticking by it.)

I understand his wise words are still quoted in the rooms in Savannah and in the Triad here in North Carolina. He had the wisdom of a very old soul.

I was told earlier this year that he’s very, very proud of me. That came from a woman who introduced herself to me with the words, “You’re going to think I’m crazy, but I have a message from your son.” I thanked her, and as I started to walk away, she added, “One more thing. Did you know he stands behind you when you speak, and he’s smiling?”

Then I knew she wasn’t crazy because I feel his presence sometimes. And I know he’s smiling because he loved nothing more than being the center of attention.

Before he died, he asked what I planned to do with the Dead Kid Card (he had spent three years playing the Cancer Card). I told him I planned to work for universal access to care because, as my T-shirt says, “Everyone deserves health care. Everyone.”

I have been arrested four times — so far — in this work. I don’t go into legislative office buildings to get arrested; I go to plead for the lives of every human being who can’t get access to care. I go, hoping against hope, that I can change one mind, two minds … enough minds to get a health care system that doesn’t reject human beings because they can’t pay.

This work is my life now. I stand for the people Jesus called “the least of these.” You can arrest me, make me do community service (which I do anyway), throw me in jail … but unless you kill me the way this system took the life of my precious son, I will keep on doing what I do with every ounce of strength, every breath and every beat of the heart left to me.

Happy birthday to me, and to Mike. The tarnished tiara is in memory of you, my sweet boy, as is all the work I do.

 

Holding out hope for the party

Kitty Schaller holds my favorite sign from Saturday’s rally.

I was ready to make a very public exit from the Democratic party if Tom Perez won the chairmanship, but other events Saturday raised my hopes for the party.

It started with the precinct cluster meetings in the morning. I’m vice-chair of my precinct (45.1 in Buncombe County, NC), and in previous years, the chair, John Parker, and I had to scramble to get five people out to a meeting so we could have a quorum. We had to make calls and get people to the meetings so our precinct wouldn’t lose our “organized” status.

“Can you just stop by for a half hour while we vote on resolutions and elect officers?” we begged. We were able to keep organized, but barely.

Yesterday, instead of begging for people to show up, we had 16 people, several of whom were young and progressive. The others were from a retirement community, and I was afraid they might be conservative Democrats like the ones who killed several progressive resolutions last year, but they were old-style progressives who decided to become active again so we could take our party back from pro-corporate influences.

Last year a conservative banker convinced people to vote against a resolution calling for re-regulation of the banks and against a resolution calling for a Constitutional amendment to overturn Citizens United. He wouldn’t stop talking until he had the votes to defeat these two resolutions.

This year, the banker was nowhere to be seen and both resolutions passed unanimously, along with resolutions calling for an immediate raise in the minimum wage to $15, plus one calling for a single-payer health care system. In all, we passed nearly a dozen progressive resolutions, all unanimously.

I wrote two resolutions — the ones calling for the $15 minimum wage and Medicare for all — and most of the precincts passed them without amendments. One precinct leader asked if the minimum wage resolution could be amended to phase in the $15 over three to five years. I told them no. If you’re making $7.25 an hour, five years without a living wage is not an option. The raise is needed now, and in five years, inflation adjustments should have it up to about $20. People need to be able to feed, clothe and shelter their families NOW, not in five years.

“Well, these a pretty conservative people,” the precinct chair said.

“Those are the very people we need to outnumber to take the party back,” I said. “Go ahead and write your own resolution, but mine stays as is.”

These new party activists were Bernie Sanders supporters, determined to move the Democratic Party back to its FDR progressivism, back to the days when LBJ signed the Civil Rights and Voting Rights acts. They were inspired by the organization, Our Revolution, which is comprised of progressive fighters.

I left the precinct meeting with renewed faith that we can do this.

From there, I went to speak at an Our Revolution rally downtown. We had 500 people turn out to call for improvements to our health care system, from support of keeping and improving the ACA, to a public option in the marketplace, to single-payer.

I told my son’s story and reminded people that 45,000 Americans died the same way every year before the ACA took effect. We’re still losing 15,000 to 20,000 in states that haven’t expanded Medicaid.

What I saw yesterday was a determination to take the Democratic Party left again.

When it was announced that Tom Perez won the party chair election, we were encouraged by the fact that the election was close and that our candidate, Keith Ellison, is now the vice-chair and that Perez has vowed to work closely with him.

I am encouraged. We have to remember that the Republican right wing has worked since the 1960s to achieve what it has, and that in one election cycle, we progressives have made remarkable progress.

So, let’s follow the Indivisible playbook. Let’s take this nation back in the 2018 elections, despite gerrymandering, despite voter suppression laws. We are the majority. If we work for this, and most importantly, if we vote, we will not fail.

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