This is not the time for a purity test

Sen. Cory Booker (D-NJ) broke the record for length of time at the podium this week, speaking about the dangers of letting the current regime continue unopposed.

What Cory Booker did this week was remarkable, but it didn’t change anything. However, it gave us a sense that at least someone is aware of the danger, and that’s encouraging at a time when there’s an ongoing coup and dismantling of our Democracy, and the media keep acting as though everything were normal.

Nothing about this regime is normal, and we have to do all we can to at least stem the damage. Cory Booker stood up and made certain we noticed by continuing to talk for more than 25 hours, breaking the record set by the late Sen. Strom Thurmond as he tried to stop civil rights legislation from passing.

Most of us who are opposed to the current regime cheered him on, but a few of my friends decided he’s the wrong messenger because he supports some things they oppose.

Dammit, people, we can’t afford to administer purity tests right now. If someone is ready to stand up to this gang of thugs and thieves, the least we can do is support them in that. If you’re pissed because he supports Big Pharma, I get that. I find it distasteful, too. If you’re pissed because he supports Israel’s existence, I get that, too. But he does not support genocide.

You can read his actual position statement:

“Prime Minister Netanyahu will perhaps be remembered as one of the worst leaders in Israel’s history. I’ve long had serious disagreements with his actions and those of his ultra-right wing governing coalition — from their actions to erode Israel’s democratic institutions, to their allowance of illegal settlement expansion in the West Bank and lack of accountability for extremist settler violence, to their undermining of the Palestinian Authority  — all of which threaten Israel’s security and the prospects for a two-state solution.  

“Furthermore, when Israel needed clear-eyed leadership in the wake of the horrific October 7 terror attacks, Prime Minister Netanyahu responded by prioritizing his own political survival over the security of Israelis and the safe return of the hostages held by Hamas – including eight American citizens. Many other Israeli leaders were willing to step up and accept responsibility for their failures; Prime Minister Netanyahu instead pointed fingers of blame. I believe his leadership has led to a prolonged military conflict between Israel and Hamas and horrific levels of death and suffering of civilians in Gaza. His actions have made ensuring true Israeli security, ending the conflict, and establishing a lasting and just peace more difficult.  

“At a time when 72 percent of Israelis think he should resign from office, there must be accountability for Prime Minister Netanyahu’s failures and his undermining of Israel’s democracy. 

“I support the State of Israel – its security, its flourishing, and its profound potential. I believe there is a deep and unbreakable bond between our two nations – a bond that should never be undermined by partisan politics here at home. Out of respect for this special relationship and my love for the people of Israel, I will attend today’s speech. I remain committed to holding Prime Minister Netanyahu accountable and working toward a lasting and just peace for all the people in the region. 

“Ending this crisis starts with an immediate ceasefire in the Israel-Hamas conflict that stops the fighting, brings the hostages home, and allows desperately needed humanitarian aid to flow to civilians in Gaza. Working towards a two-state solution is the only pathway to a lasting peace that protects Israel’s right to exist as a democratic, Jewish state and ensures the Palestinian people’s right to human dignity, prosperity, self-determination, and a state of their own.”

So there you go. Senator Booker is not a fascist, and right now, there’s a fascist wildfire going on in DC, and we have to get it under control. Distasteful is hugely preferable to fascist.

Thanks to this regime’s incompetence and corruption, our economy is teetering on the brink of collapse, our public health system is being shredded, our schools are being targeted for dismantling, climate change is speeding up and the rest of the world thinks we’re a bunch of idiots. I can’t disagree with that. If we’re so stupid that we turn away someone who wants to lead the fight against these clowns, we’re pretty damn stupid.

I don’t agree with Booker on every issue, either. In fact, I’ll bet there’s not a politician out there who agrees with me 100 percdent on everything. I wasn’t fond of Biden when he became the nominee, but he did a great job on a lot of issues, and he certainhly was preferable to his opponent. The fact that Republicans succeeded in putting that monster back in the White House is repugnant to me.

My problem is that Democrats refuse to stand up to the Tangerine Tyrant, and when one does, a group of people holds its nose and dismisses him while the rest of the party continues to appease the criminal.

We’re running out of options here. He is consolidating his power and it’s only going to get increasingly difficult to oust him and his gang of incompetents. Let’s let the imperfect warrior have at it while we still have half a chance.

He’s gone.

This is my favorite photo of Mike as an adult. He never just sat still, but my daughter-in-law managed to capture this, I imagine, by threatening him. That smile, those eyes …

This was the day Mike left. I think it was a choice to go on April Fools’ Day. He was, after all, a self-professed jackass. We celebrate it as Mike Day now, wearing plaid, nibbling on Cadbury Creme Eggs and doing something silly. We spend it in the spirit of Mike.

On this day in 2008, Mike and I had spent the previous evening watching Star Trek — a couple of original episodes, a Next Generation and then the Deep Space Nine episode where Worf joins the crew — and nibbling on expensive dark chocolate.

“You know, I’m having a good time,” he said.

“Huh?” I was a little stunned. He weighed less than 100 pounds, he was confined to a small bedroom and he was near death. How could he be having fun?

“I have Star Trek and chocolate,” he said. “I have my video games, Boo Bankie and my personal valet,” he said, gesturing toward me.

“Damn,” I said. “I can never complain again.”

“You’ll find a way,” he said. “I’m counting on you.”

Mike and I were alone in the house that evening. Everyone had gone back home, including James and Janet, who had been here the whole two weeks and needed to check on things at home. They planned to come back on Wednesday. Rob was at work. Mike and I had the entire evening to ourselves, which was a priceless gift.

In the morning, Mike told me he was feeling really tired and didn’t want to be moved to the living room.

“I think Ill just sleep awhile,” he said.

I dropped into the office and got back home for lunch. Mike was still asleep, so I let him be until the hospice nurse arrived to check on him. We had trouble rousing him.

“He’s between here and there,” she told me. “He could be in and out for days.”

I knew better. He was leaving. I sat down next to the bed and started talking to him, telling him I’d be OK, but believing my heart would stop when his did. I had this image of me slumped on the bed, my hand still holding his and people being shocked that I’d died, too. It had happened to someone I knew. My elementary school principal, when told his mother had died, sank to the floor and died of a heart attack. Just like that, he was gone. I could almost hear people saying it about me: “And just like that, she was gone …”

The nurse kept telling me I’d need rest, that he could linger for days, but I knew better. Mike was not a patient person. Once it was time for something to happen, he was ready. I was only in labor three hours, I told her. This kid doesn’t wait around once he’s decided.

We made some calls. I asked Rob to call Mike’s Dad. I didn’t want to hear him wail. Rob called the office and told them we wouldn’t be in, that Mike had taken a turn for the worse. I called Danny and told him Mike was dying and that it wasn’t likely he’d have time to get back here, then I sat back down by the bed and talked to him. Hearing is the last sense to go, and I knew he could hear me. He opened his eyes and told me he loved me, then gestured toward the window, as though he were greeting someone.

“Ellen …” he whispered, and closed his eyes. He was gone a few minutes later, a little after 3:30 in the afternoon. I sat a moment, waiting … Nothing happened. It hit me that I wasn’t going anywhere. I was left here with the corpse of my beloved son and there wasn’t a damn thing I could do about it.

Later that night, my husband told me, “Nobody ever loved a kid more than you loved Mike.”

“Yeah, for all the good it did him,” I said.

So, I’m left here with a promise to keep. I have advocated for health care for all since the say Mike died. I left my job in 2009 to do it full time.

That’s why I’ll be at the National Day of Action rally in Asheville, 11 a.m. to 1 p.m. this Saturday to talk about the need for access to care for everyone. That’s why I hound elected officials to improve Medicaid, not cut it.

Yeah, I’m a big mouth. I don’t want anyone — not even the people who can change things but who refuse to do so — to go through what my family and I went through and still live with every day.

My grandkids are grown now, but they still miss him. I hear them telling their own children Uncle Mike stories. My surviving son called me a couple months ago to tell me how much his son reminds him of Mike sometimes. I see it, too.

I can’t begin to describe to you what it feels like to lose a child, especially when that child should still be with us. Mike died from a broken system that could be fixed easily, but that stays broken because of simple greed. That shouldn’t happen to anyone.

So again, this year, especially this year, I renew my promise to fight for health care for everyone — along with a living wage, safe housing, a reformed justice system that doesn’t prey on the poor. I want all of it because all of it has been broken deliberately. I want all of it for my surviving son and his kids and their kids. I want it for you and your kids.

I want it in memory of Mike.

So, today, I’ll enjoy the Wearin’ o’ the Plaid and the chocolate. Tomorrow, I’m back on the battlefield.

The last laugh

Please don’t tell me this image of my son is inappropriate. He was inappropriate whenever he thought it could get him a laugh. This image portrays him beautifully.

On this day in 2008, we had 12 people from the Raleigh area visiting. They were in the living room, going through photos, in the kitchen helping with food and cleanup, on the deck, in the hot tub, in the back yard … And they took turns going in to see Mike. His best friend, James, was the sentry, only allowing in two or three people at a time, shooing everyone out when Mike looked tired.

Their cars filled the driveway and spilled out onto the side of the street, which is a small back road on which people are usually pretty careful.

As some friends and I sat in the living room going through music for Mike’s approval. He had given us a list of songs he wanted played at his memorial service, but we wanted a bigger playlist for the reception afterward. Music and food were the two greatest passions of Mike’s life. I was trying not to think about what the playlist was for when someone knocked loudly on the door. I opened it to see an angry woman, bleach-blonde, overweight and with too much makeup. Way too much makeup. And she looked mad.

“What the hell are all these cars doing parked out on my road?” she demanded before I could ask what was wrong.

“First of all, it’s a public street and the cars are pulled off to the side, ” I told her. “Secondly, they won’t be here but a few more days. See, my son is dying and his friends have come to say goodbye. You’ll have your road back soon.”

I started to close the door, savoring the guilt and shock on her face.

“Oh my God,” she gasped. “Is there anything I can do?” I told her she could be sure to drive carefully and quietly closed the door.

I never raised m y voice.

Maybe I should feel a little badly about how I treated her, but as she drove away, I saw a bumper sticker on the back of her car that read, “Honk if you love Jesus.” When I walked around the neighborhood a few weeks later, I saw the car in a yard, and on the fence at the front of the property was a sign that said something about the family loving Jesus.

It always bothers me when people use Jesus as a weapon. Most of the people who ask whether my son was working when he got sick identify as born-again Christians. Like Jesus ever asked for a co-pay or an insurance card or turned anyone away who was poor and sick.

The fundamentalist Christians I grew up among tried to teach me that it was OK to lie, cheat, steal or even kill, as long as it’s for Jesus. I never understood that, even as it was pushed on me throughout my childhood and adolescence, so hypocricy is something I just can’t tolerate, and using Jesus as a weapon is hypocrisy. You can’t be a Christian and believe it’s OK to harm people.

Anyway, I enjoyed the look on that woman’s face when she reailzed what a jerk she’d been. She never stopped back, although another neighbor came by later to ask whether everything was OK.

“I noticed all the cars and thought something might be going on, so I said a prayer for y’all,” she said. She checked on me a couple times after Mike died to make sure I was OK.

Mike woke up an hour or so after the woman left, so we related the story to him. When I told him I’d used the “Dying Kid Card,” he let loose a good belly laugh. It would be his last.

On this day 17 years ago, we had just two days left with him.

The bad news

Mike was a proud, unapologetic jackass, and it served him well.

On this day in 2008, I brought my son home to die.

We had been told he needed to gain 2 pounds before his next chemo appointment, and he had done his best to eat anything he could tolerate, but when he stepped on the scale, he had lost another pound. I’ll never forget the look on his face, as he said, “I tried, I tried.”

I remember Dr. Hurwitz choking up as he said, “You’re a good person, Mike. You don’t deserve what’s happening to you.” I couldn’t help but notice the difference between this and the Savnnah doctor’s cavalier attitude as he told Mike there was nothing more he was willing to do (I also remember dropping an F-bomb on that thoughtless monster).

The nurse tactfully told Mike he didn’t have much time left and that he should go home with me that day, which relieved his roommate and best friend, James.

“I’ve been so afraid I’d come home and find he had died while I was at work,” James told me.

As we were leaving the clinic, Mike turned and looked at me.

“How much time do you think I have?” He asked. “Maybe two weeks?”

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

When we got back to his apartment, I called his father, who had survived stage 3 colon cancer and couldn’t seem to grasp why Mike hadn’t. I lost my cool a little as I explained that he’d had all the access to care Mike didn’t have. He had money to make co-pays and deductibles. He had the top-of-the-line medical insurance, while Mike only got Mediaid after he moved and left his wife. He had to leave his wife, I reminded his father. I gave him a moment to allow that to sink in, but it didn’t. He kept insisting there must be something we can do because he was so damned used to being able to buy whaterver he needed and he assumed the rest of us enjoyed that level of privelege.

“What can I do?” he wailed between sobs.

I lost it.

“You can send him some fucking money!” I said. “He has lived in poverty for the last three years while he waited for approval for his disability — which we’re still waiting for, by the way. Meanwhile, everyone else supported him. We fixed his car, we paid his bills, we bought him clothes. You gave him a loan that came with a lecture on the importance of repaying it. It’s too late for you to do anything of consequence. You had your chance and you blew it.”

I was surprised at how angry I was. I wanted to feel regret for what I had said, but I didn’t. I still don’t. But I did make sure he had the chance to come and say goodbye to Mike, and that it was a good visit.

It was a three-hour drive from his apartment to my house. He told me he was glad he didn’t wait longer to come. I got it. Coming home meant he was ready to die, when he loved his life so damn much. Whatever he was put here to do, he had done it.

I didn’t know how much time we had left, but I knew it would be measured in days, perhaps weeks. Until then I would soak him up. Every wisecrack, every cackle, every goofy moment.

It turned out he was right on our way out of the clinic. On this day in 2008, we would have just two more weeks with him.

His first disability check would arrive nine days later, 37 months after he applied.

Just short of two years later, the Affordable Care Act would pass, forcing insurance companies to cover people with “pre-existing conditions.” Insurance companies wouldn’t have to cede much power, as it turned out. The average family deductible for an employer-sponsored policy is over $3700 at a time when nearly half of Americans report they can’t pay a $400 surprise bill without borrowing money. People still can’t afford care.

While most states have expanded Medicaid, it could become a moot point as the current administration plans to slash its funding. Tens of thousands of Americans die every year just the way my son did in 2008 — probably more than 2 million since he died — and the current administration is planning drastic cuts.

The bad news 17 years ago was that my son was dying; the bad news today is that things are even worse now.

Thanks, Chuck, but we have to talk …

Congressman Chuck Edwards (R-NC11), had the guts to come out and face his constituents last night. He learned that’s not enough to get our approval.

Thanks for coming out, Chuck. I really do appreciate you coming, facing us and talking to us.

Not all of us behaved well, but the more I think about it, the more I get it. I have decided that as long as you are civil to me, I will be civil to you. After all, Mark Meadows sneered at me and told me he wasn’t interested in anything I had to say, turned on his heel and left.

I sat and listened to you and didn’t try to shout you down. That does not mean I approve of your stands on pretty much anything except Ukraine, if indeed you are as willing to support Ukraine as you said.

I disagree that Elon Musk is a “very smart man,” or that he’s doing “necessary work” allowing his incel tech bros to go wading through my personal data.

I disagree that these cuts are necessary, even though you read from an already debunked list of crazy expenditures (they sound crazy because they’re not true for the most part — you know, like the millions in Social Security benefits being paid out to 150-year-olds).

On on the subject of Social Security, two more things: Number one, Social Securoty can be kept solvent by raising the income cap on the Social Security tax and making the wealthy pay their share, and two, when you promised that benefits won’t be cut for anyone receiving them already, that tells me you’re going to screw our children and grandchildren, which to me is no more acceptable than screwing me over.

Social Security adds nothing to the debt. I paid for these benefits, as do my son and his children and their spouses. We deserve to collect, period.

Let me also issue a warning on Medicare and Medicaid while we’re on the subject. You know my son died 17 years ago because he couldn’t access care. I do consider that murder, since doctors decided they wouldn’t treat him, even though they knew he would die without treatment. And tens of thousands of Americans die from the same cause every year. That’s murder on a massive scale, and cutting Medicaid or privatizing Medicare will not save a single life. It will, in fact, cause more innocent people to die.

And yes, it is the government’s job to regulate things to protect its citizens.

Seen at last night’s town hall.

Also, you’ll want to choose a bigger venue than last night’s auditorium. Only about 300 people got in, which is just over 10 percent of the crowd that showed up. I understand you might not have expected between 2,000 and 3,000 people. And you might have expected more supporters (I didn’t see anyone holding up a pro-Republican sign), but you had to expect that more than 300 people would show up (the auditorium holds 340, but at least 40 seats were roped off for media and staff). I showed up three hours early and I was not the first one there. I knew it was going to be an overflow crowd and I wanted to be sure I got in.

Yes, the crowd was angry at what’s happening and at your votes supporting so much of it. No one gave the “president” a line-item veto. He canot defund things Congress has funded because under the US Constitution, he doesn’t control the purse strings — you do, and you have no business handing that duty over to the “president” or to his unelected overgrown adolescent sidekick.

On education, I understand the Department of Education isn’t specified in the Constitution, but it’s necessary to ensure an equal education for all Americans. It’s far from perfect, but it needs to be improved, not shut dowm because too many parents are not the best judge of what theit children need to know in a competetive and challenging world. One key thing fascists need to succeed is an uneducated populace, and that’s what the aim is here.

A lot of the people who did get into the auditorium were rude and that pissed me off a little. I actually wanted to hear what you had to say, since the last time we met, you spent almost an hour listening to me and the people who were with me. But I also understand why people shouted over you. You are, after all, one of very few Republicans willing to face your constituents. So, you have to understand that you’re getting all the vitriol because you’re the only one willing to speak to us.

That vitriol is not undeserved, by the way. Your willingness to face us does NOT give you a pass to help a fascist unravel our Democracy. You did a good job keeping us informed and advocating for us after Helene, but now you’re allowing benefits to be slashed for veterans, children, people with disabilities and others who need your help.

I’m glad you came out to talk to us. I really am. But you also need to listen. You need to heed the warnings that were issued last night. We will not sit by and let you and others destroy this country. We will fight. The rude behavior from the crowd may have been annoying, but we the people are just getting started.

You need to listen. You need to heed the warnings.

Two pounds.

This image, taken seven months before my son 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 17 years ago, I was praying for two pounds.

Michael had endured two rounds of chemo and had been told he needed to gain two pounds before his next appointment, now less than a week away.

I had wandered around the Duke University campus after he fell asleep during his chemo infusiuon and decided to visit the “chapel,” a magnificent church. I found a quiet little space and sat down.

“Two pounds,” I prayed. “Please, just two pounds…”

Every bite of food was a victory, it seemed, but we didn’t know the cancer was preventing the nutrients from being absorbed. We still hoped for a year with him, but we needed him to gain two pounds to show the chemo was working.

My colleagues decided to take my vacation quandry into their own hands, since the company seemed prepared to let me run out of vacation days and then have to choose whether to go to work or care for my dying son without an income. One colleague donated two of his vacation days to me, and by the end of the day, my husband and I had 33 vacation days. The executive editor heard about it and thought there had to be a better solution, so she spoke to someone at Gannett Corporate, who agreed to roll back my vacation clock to zero and then pay me for any days I needed to take off to care for Michael. I didn’t need to worry anymore.

The paper’s publisher got a little emotional when he told my colleagues they were getting their vacation days back because my husband and I would be given the time we needed to care for Michael.

“I’m praying for a miracle,” the publisher told me.

Something about that really bothered me. It took me a moment to reply.

“Please don’t try to get my hopes up,” I said. “I know you think that’s a comfort, but what it says to me is that maybe I haven’t prayed hard enough, or maybe that God will give the OK because someone other than his mother asked. Maybe it’s better for you to pray for us to have the strength we’re going to need to get through this, because there isn’t going to be a miracle. My son is going to die because he couldn’t get the care he needed to survive, not because nobody prayed hard enough.”

That would be the first example of someone trying to be a comfort and saying the wrong thing. After Michael died, I would hear how he’s in a better place (the loving arms of Jesus), or God needed another angel, or be thankful you have another child … People are trying to be kind, I understand. But as a bereaved mother, I have to tell you the best thing you can say to me is, “I’m so sorry. Tell me about him.”

My views on God and religion changed a lot during this time. I no longer believe God will intervene. I believe God gave us free will and now is watching us fuck everything up. I believe in the teachings of Jesus, but he is not my personal friend. He doesn’t have to be watching me like Santa Claus and the Tooth Fairy for me to be kind to others, or have empathy. You can agree with me or not, I really don’t care. Your beliefs sustain you, and as long as you don’t impose them on me, I’m good with that.

One thing, though — don’t ever tell me God took my son. God had nothing to do with it. My son died because humans are greedy. My son died because humans had no empathy and the insurance companies think profit is far more important that human life.

On this day in 2008, I was praying for two pounds. I was praying for a little more time with my precious son.

It was not to be. On this day, we had two weeks and six days left with him.

Try to focus amid the chaos; have a bite of elephant

At a rally to protest the attempt to overturn a free and fair election in Asheville last week, some 800 people came out, despite frigid temperatures.

I think we’re all feeling it — the seemingly endless parade of outrageous acts by the new administration. It seems inconceivable that things could deteriorate so quickly, and hard to fathom that it’s been planned so carefully for so long. The chaos in Washington is purposeful, deliberate.

The Oval Office is churning out executive orders, each more outrageous than the last. The Justice Department is running short of lawyers to defend all the lawsuits and the courts are putting some brakes on the slide, but Congress sits with its collective thumb up its collective backside. The Democrats ask me for money a dozen times a day in a dozen different ways, but I see no effort on their part to throw a monkey wrench into the works.

So, it feels like it’s up to us, and in reality, it probably is.

We all know we can’t do it alone, and it’s really hard to look at the big picture when your rights and financial assistance are being attacked from every direction. It’s hard to know where to start, and that’s the point. If they can overwhelm us, the can win.

So how do we fight?

I heard a great riddle the other day that I think is truly appropriate now:

How do you eat an elephant? Answer: One bite at a time.

Each of us has something we do well, something we are passionate or particularly knowledgable about. That’s your bite. Whether it’s calling or writing to your government representatives, organizing a block party to help others learn about the issues, plannning and executing rallies and teach-ins, getting out the vote … You get the point. There’s a hell of a lot of work to do, and if we each concentrate on our own “bite,” we can clean up that elephant in no time.

Seventeen years ago today, I was driving to Raleigh so I could take my son for chemo. I was having to use vacation days to care for my dying son, and I was running through those pretty quickly. I couldn’t afford to take time off without pay, but I was trying not to think about that. Mike and I had several doctors’ appointments to see whether we could do anything to extend his life by a few months, and I had made appointments with officials I needed to interview for a story I was working on about the state’s mental health system “reform.” That would allow me to get paid for the time I was in Raleiugh, writing a news story as I sat by my son’s chemo bed.

It would turn out there really was not much more they could try than chemo, and that might keep the cancer at bay for up to a year if we were lucky. We were not. On this day in 2008, we had just four weeks and two days left with him.

I started out working on improving access to health care as the oligarchs began to dismantle every other part of the safety net. It didn’t tke me long to realize I needed to stand with my brothers and sisters who were working on wages, food security, education, justice system reform and more. We can’t weave one strand of the safety net back in, we have to put it all back together, each doing our part.

Don’t worry about the Gulf of America, worry about a foreign national accessing our Social Security and other records and sharing it with his tech bros. Worry about the inaction of Congress. Take your piece and work it. Stand with your neighbors and understand we’re all under attack here.

I fight in memory of my precious son. But I also fight for everyone still here.

Not sure what you can do? Look into organizations that are doing the work already — Common Cause, the ACLU, the Poor People’s Campaign, Indivisible, the NAACP and more. There’s a place for you and your bite of the elephant awaits.

Hoping for more time

Michael was a proud, unrepentent jackass. He loved being silly for silliness sake.

Seventen years ago, I was praying for more time with my son. His cancer was back and we knew there would be no cure, but we might have a year with him — if the chemo worked.

Michael was born with a birth defect that left him vulnerable to an aggressive type of colon cancer. He was supposed to have a colonoscopy every year, which he was able to do in New York, and he had no idea a move to Savannah, Ga., would be a death sentence.

Georgia doesn’t offer Medicaid to adult men. If you can’t get a job with good insurance coverage, you’ll die from something preventable, just the way Michael did. My son was a chef and very few restaurants offer decent health coverage. What the Republicans are working on now, by the way, is gutting the federal program that has saved millions of lives. In fact, Georgia is still killing its citizens — it is one of only 10 states that have refused to take the federal money to expand Medicaid to care for those who don’t otherwise have access to health care.

If you think a job is the best route to health care access, think again. Minimum wage hasn’t budged in 16 years, so salaries haven’t kept up with inflation, and the average deductible — the amount you have to pay out of pocket before insurance kicks in — is $1,787 for a single worker, $3,800 for a family. Premiums averaged $8,435 for singler coverage and $25,572 for family coverage (this comes from Kaiser Family Foundation) — for employers that offer family coverage. In other words, you can be fully insured and have no real access to care. This at a time when 41 percent of Americans say they can’t pay a $400 unexpected bill without borrowing money, according to research done for the Poor People’s Campaign two years ago.

When Michael and Janet decided to movde to Georgia so she could attend the Savannah College of Art & Design and he could attend Atlantic Armstrong University, he took a chance that he’s be OK for four years. He lost the bet.

Michael couldn’t find a doctor who would let him pay off a cololoscopy over time. They wanted cash up front. Of course, as a college student, even though he was working, he had no access to health care.

He started having symptoms, but the doctors didn’t budge. One even wrote in his medical record, “Patient needs a colonoscioy but can’t afford it. Will advise financial counseling.”

The symptoms got worse and he started losing weight. Still no help from the doctors.

He kept losing weight and he went to the emergency room three times and was given laxatives and pain pills — and huge bills.

Finally, the doctor agreed to do a colonoscopy. This time he wrote in the record, “Couldn’t finish procedure. Next time use (pediatric) scope.” He never told us that. We found it in the medical records a year later.

Three weeks after the failed colonoscopy, Michael was finally admitted to the hospirtal. His organs were shutting down and he was vomiting fecal matter. Think about that for a minute. His colon was so blocked it was all coming back up. This led to the running joke that Michael was the expert on all things “tastes like shit.” He would take a bite, consider it for a second and then pronounced that whatever it was, it most decidedly tasted nothing like shit.

That was the beauty of my son — he never lost his sense of humor, or his dignity, even while being disrespected and humiliated or altogether ignored by the health care system.

He weighed just 111 pounds — he was 6 feet tall. It would be five days before he was stable enough to withstand surgery. Before surgery, one of the doctors tried to refuse to answer our questions and tried to a leave with a “trust me, I’m the doctor.” I stood between him and the doorway and let him know he would have to knock me over to leave. He wasn’t happy, but he did answer our questions.

After surgery, Janet and I had to go looking for the surgeon to find out the results. They had taken a large section of colon and samples were sent to pathology. Several days later, the doctor would saunter into the room and announce it was cancer like he was diagnosing a cold.

A charity covered the cost of his surgery and treatment, but he was treated like a charity patient, and a couple months after the chemo ended, he began getting sick again. The doctors took a “wait-and-see” attitude for weeks on end as my son’s weight dropped again, this time to 104 pounds. He was admitted to the hospital on Thanksgiving, but his doctor was out of town, so no one would start IV nutrition. Finally, my daughter-in-law theatened to take it to court. I sat her back down, faced the on-call doctor and told him he had 15 minutes to get a nutrition line in or I would go to the press.

“What do you know about the press?” he asked.

“I am the press,” I said.

I was a reporter with connections in a lot of cities, including Savannah.

“I know what to say because I know what gets the attention of editors and reporters and I think the words ‘deliberate starvation of a 31-year-old man because he can’t pay cash,’ will do the trick just fine,” I warned. They hooked him up.

He needed surgery again, and this time, he was treated no better, and several days after surgery, the doctor came in and blithely told him the pathology report showed a few viable cancer cells.

“That’s it then,” he said. “You should get your affairs in order.”

I chased him down the hall to ask why there wouln’t be more surgery to get those few cells.

“We’re not going to do that,” he said.

I told him to fuck off. Janet gave him a good what-for as well, and he never came back into Michael’s hospital room. Mike was there for 11 more days and we never saw another doctor.

I was desperate, so I started calling every cancer center on the East Coast, hoping to find one that would see him even though he didn’t have insurance. That’s when Dr. Herb Hurwitz at Duke University Medical Center agreed to do a consultation. Once he saw Michael, he decided to adopt him.

Michael had a life-threatening infection in his surgical incision and the surgeon in Savannah told him it was healing slowly because he was so malnourished going in.

“Well, that and a dangerous infection,” Dr. Hurwitz said, snapping the exam glove off his hand. He knew to send my son back to Savannah would be a death sentence, so he helped Michael get Medicaid (he had to separate from his wife to get it), and gave us two more years.

But this time, there would be no hope of a cure. Dr. Hurwitz did all he could to save my son’s life, and he wept when there was nothing more he could do. All he asked in return was that we advocate for universal access to health care, and as my son lay dying 17 years ago, I promised him I would fight for health care to my dying breath.

So, that’s what I do. What happened to my son shouldn’t happen to anyone, ever, and yet it happens every day in this country. Private insurance companies add NOTHING to health care. In fact, they are dedicated to denying it every chance they get.

Now, as I re-live my son’s death yet again, things are worse than ever. We have people in Washington determined to make health care inaccessible to as many people as possible.

This season of grief, I renew my promise again. I will fight. I will not stop. If you’re tired of hearing it, too bad.

We live, we die, and we leave a legacy

Rev. Dr. Nelson Johnson, a fighter, mentor and peace seeker, died Feb. 2. Here, he speaks to a crowd in Raleigh last March.

My friend and teacher, Rev. Dr. Nelson Johnson died Feb. 2. It’s hard to imagine the Movement without his booming voice at the podium as he worked for peace and justice, and without his quiet wisdom when speaking to a few or just one.

But as Bishop William Barber pointed out at his home-going, Rev. Nelson left a legacy. He leaves two daughters and two grandchildren devoted to carrying on his work. He leaves two generations of ministers and civil rights workers he has mentored and led to carry on his work. He leaves the legacy of the Greensboro Truth and Reconciliation Commission, modeled after that of South Africa, but without its power to force testimony from anyone.

Rev. Nelson left people like me, who have been influenced not just by his woirds, but by his life, and that of his devoted and equal partner, Joyce Hobson Johnson.

Of course, this time of year, my thoughts always turn to Mike and the horror of watching my child die.

But yesterday reminded me: Mike left a legacy.

He left a legacy of sobriety even under the most horrifying circumstances.

He left a legacy of silliness, where dozens of people, maybe more, pause every April 1, don something plaid and eat a Cadbury Creme Egg in his memory.

My son left a legacy of dignity, even in the face of medical neglect and humiliaton.

Seventeen years ago, I vowed to fight for health care justice as long as I need to, and I continue to do that.

Imagine that. I am part of my son’s legacy.

The grief doesn’t end.

Mike Danforth in 2000, with his niece, Meghan. This was eight years before he died from legalized medical neglect.

It’s been very nearly 17 years since I heard that maniacal laugh that meant someone had just been the butt of one of my son’s practical jokes; 17 years since I tasted one of his delicious meals; 17 years since I picked up the phone late at night to hear, “Hey, Mom, I figured you’d still be up.”

Time does not heal all wounds. Some are just too traumatic and gaping.

Michael was born with a birth defect that left him vulnerable to a particularly aggressive form of colon cancer, and he needed colonoscopies every year. The problem was that in our country, insurance companies hold sway over the entire health “care” system, and profit is king. He was classed as uninsurable because that birth defect was a pre-existing condition. He went without the needed tests because the doctor demanded cash up front — no credit cards or checks — and he didn’t have the money, a fact the doctor noted in Mike’s medical records. “Parient needs a colonocopy but can’t afford it.” One doctor even wrote that he suggested financial counseling, as though it were a prescription for the symptoms Mike was experiencing.

Yes, he went to the emergency room, and no, it is most definitely not mandated to fix what’s wrong with you. They only have to stabilize you, which means giving you pain pills when the problem is a massive tumor. But they don’t have to look for that, they only have to stabilize you — in other words, give you pain pills for a tumor blocking your colon. He left with the wrong diagnosis, medications that did nothing to address the cause of the pain and a huge bill — three times.

Once, the gastroenterologist agreed to do a colonoscopy, but Mike’s colon was blocked, so he stopped the procedure. He didn’t say anything to Mike; we found it later in the records we had to threaten to sue to get. (In case you didn’t know, your records are YOUR properry, not the doctor’s) So this man knew my son had a life-threatening condition and never told him.

We struggled and fought for months to find out what was going on until, finally, he went to the ER and discovered his organs were starting to shut down. He was vomiting fecal matter, he weighed just 111 pounds and he was in excruciating pain. He was hours from death. To turn him away at this point was actionable, so they put him in the hospital. It took five days to stabilize him so he could have surgery, and the night before surgery, I had to physically block a doctor from leaving the room until he had answered a couple of questions for us. Uninsured people weren’t really worth his time, but this mouthy broad wasn’t going to let him off the hook quite so easliy.

After surgery, we saw his doctor briefly, and then not again for several days. When he finally dropped in, he casually told my son and daughter-in-law that Mike had cancer, then left.

I can still hear my son’s voice as he told me over the phone that it was cancer and that he had no answers at all about its type or extent. That would be several weeks in coming, when he was finally able to get an appointment at the cancer center. He had chemo and radiation, but then he got sick again six months later. Again, they ignored his symptoms for months. This time they let him get down to 104 pounds (he was 6 feet tall). The radiation had caused a stricture in his small intestine, and it should have been diagnosed and dealt with weeks before. Still, I had to threaten to go to the press with the story of the deliberate starvation of a 32-year-old man because he couldn’t pay cash for care. As a veteran reporter myself, I know the words that get the attention of media because they get my attention, and there was nothing false in what I was saying.

After that second surgery, the doctor came in and matter-of-factly told us that the pathology report found a few viable cancer cells. “So, that’s it,” he said. “You’ll want to get your affairs in order.” There was no emotion from the man. Nothing. If anything, he seemed bored.

Six weeks later, we got an appointment with Dr. Herb Hurwitz at Duke University Medical Center. He asked Mike when he had last seen his surgeon.

“A few days ago, why?” my son asnwered.

“What did he say about your incision?”

“He said it’s healing slowly becuse I was so sick going in.”

“Well, that and a serious infection,” Dr. Hurwitz said, his latex glove snapping as he pulled it off. “It’s a good thing you’re here and we caught it in time.”

They had intended to let him die from the infection. Either that or they were incompetent. Pick one. It can’t be neither.

Dr. Hurwitz gave us two more years with Mike, and his quality of life was pretty good through most of it.

But then, 17 years ago this week, I got the call.

The cancer was back.

We had just six weeks left with him, and I have to re-live those weeks, day-by-agonizing-day, every damn year, and if you’re sick of hearing about it, then think about how damn sick I am of living it, of being dragged back there year after goddamn year. I have to remember him weighing under 100 pounds, unable to walk, unable to eat more than a few bites at a time and still cracking jokes and watching Star Trek.

He was that wildly silly kid, even through all the humiliations and indignities he suffered during those three years.

He never let go of the jackass in him. He died with a lot more dignity than the people who neglected and killed him.

So, for these six weeks, at least, I’m back. I need people to know the pain these dreadful public policies cause real people — good people.