Writer’s block

September 27, 2023 progressive living No comments

My friend and former colleague, Tony Kiss died in August. John Boyle led the memorial service, which I think Tony would have loved.

Trust me, it’s a real thing.

It happens when my brain thinks it’s busy enough and doesn’t want to do any more.

“Knit,” it tells me. “You love to knit. It calms you.”

So, I knit for a little while. Nothing.

“You know,” I tell me, “we’re running low on bread. You should make bread.”

So I make bread. Still nothing.

“A nap,” I say.

No. I’m not a napper. Besides, I can’t fall asleep when I’m all keyed up like this.

You know, a walk in the woods always does wonders.

It does, but when I sit down at the keyboard, nothing happens.

It’s been a tough year, — we lost my brother-in-law to a long and debilitating illness — but things are finally settling down.

And then Tony Kiss died.

Damn. I knew he’d been sick and I wanted to visit, but I was running back and forth to Louisville, caring for my brother-in-law. I just couldn’t get there, and just as we finished up our final trip to Louisville, we got word.

Tony was my colleague and my friend. He was funny, and (we all like to use the word) quirky.

For a time, our desks were adjacent, and since both of us were packrats, the piles of paper and other stuff tended to overflow from his desk to mine. Sometimes, it would be a beer he was asked to review (I always knew before you did whether a new beer was worth the price). I once joked that if any beer landed on my side of the “divide,” I’d confiscate it.

Tony laughed, but then something lovely happened. I was having a terrible day — I don’t remember what was going on, but I was unhappy. I went out to do a interview, and when I came back, there were a couple of beers on my side of the divide. Tony was back-to me, so I said something. He turned around, smiled and shrugged. It happened a few times. His reaction was always the same: a smile and a shrug.

He loved to be the center of attention, and we all loved to hear his stories. He loved meeting important people, and then he delighted in telling the tales. As an entertainment writer, Tony got to meet a lot of important people, and we got to hear the stories, often over a couple cold beers.

I wish I’d found time to call him one last time, but I don’t think he’s the only friend I should have called awhile ago. I think I’ve drifted away from a lot of old friends since the pandemic hit. Maybe that’s part of this malaise. Perhaps it’s time to reconnect.

Hello again

June 30, 2023 progressive living Comments Off on Hello again

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They’re still killing us.

February 27, 2023 progressive living No comments
Lisa Edwards, 60, died of a stroke in police custody after being refused treatment at a hospital in Knoxville, Tenn. /Photo: Knoxville News Sentinal

Fifteen years ago, in the final weeks of my son’s life, I was devastated that my son really would die because doctors in Savannah, Ga., refussed to treat him. Because the Emergency Room at Memorial Health in Savannah refused to treat him.

Most people don’t know that an ER can refuse to treat you, but the fact is, they only have to stabilize you. If you show up in pain, they can give you pain meds and release you. If you have an intestinal blockage, they can give you a laxative and release you. I know this because it’s what happened to my son as he desperately tried to seek care.

Lisa Edwards, 60, went to the ER at Fort Sanders Regional Medical Center in Knoxville, Tenn., on Feb. 5, saying her ankle was broken and she believed she was suffering a stroke. Doctors blew her off and told her to leave. When she begged them to listen to her, they called police.

The video (https://www.knoxnews.com/story/news/local/2023/02/23/knoxville-police-investigate-officers-after-woman-collapses-in-custody/69937224007/) shows Edwards pleading with police to listen to her, while they insist she has to leave, and finally arrest her. She collapsed in the back of the police vehicle and died a short time later.

Fifteen years and a few days ago, I had rushed to Raleigh after getting a call from my son that his cancer was back and there would be no cure. My husband and I checked into a motel near my son’s apartment and I got a call from one of my colleagues in the newsroom. A young homeless man had died after being turned out from the emergency room. Since I covered health care policy, my colleague needed some names and numbers of people to interview for a story about him.

Tommy McMahan had pneumonia and the doctors had given him antibiotics and discharged him. McMahan knew he was too sick to go back on the street, especially since the twmperature was well below freezing. But doctors refused to admit him.

Emergency Room personnel called the police, who arrested him. He died that night, alone in his cell.

Like my son, Edwards and McMahan weren’t wealthy and couldn’t pay for treatment. Like my son, the hospital disposed of them. Like my son, they died, The only difference is that my son suffered, in poverty, for three years because that’s how long it took to approve his disability. His first check came nine days after he died.

This is how we treat poor people in this country, and about 68,000 of them die each year from lack of access to care, according to a study before the pandemic hit in 2020. And it’s been estimated that up to a third of the more than one million covid deaths could have been prevented if people had sought care right away. But they didn’t because nearly half of Americans say they can’t afford a $400 suprrise bill without borrowing money.

What’s worse is that up to 14 million people could lose access to health care when the pandemic spending ends. Medicaid grew by nearly 20 million low-income people under the expanded access during the pandemic, which began in 2020. Once the spending dries up, some 14 million of them could be booted from the program as their eligibility disappears. Thousands will die from lack of access to care.

Before my son died, I promised to fight as long as I lived to get a system of universal health care in place. I thought the Affordable Care Act would do that, but I was mistaken. Big Insurance has preverted the law to benefit themselves, and we, again, lose.

The average deductible out-of-pocket costs for workers covered by an employer plan is over $6,000, according to the Kaiser Family Foundation, with workers at small companies paying up to $2,000 more.

That’s not affordable.

In addition, plans with lower deductible (and Medicare “Advantage” plans) have networks so narrow that you can go bankrupt if you get sick or injured while traveling.

In the end, that’s not affordable, either.

Fifteen years ago today, we were preparing to say goodbye to my son. I was making calls to set up interviews in the Raleigh area so I wouldn;t be charged with vacation time when I took him to see his doctor and to his forst chemo appointment. I could do nothing to save his life.

Fifteen years and people are still being refused care and dying as a result. We hear about them all the time, but we still refuse to vote for people who will give is the health care system we need.

If this isn’t state-sponsored murder, I don’t know what is.

On this day 15 years ago, we had less than five weeks left with my son.

The immorality of our health care system remains

February 18, 2023 progressive living No comments
My late son, Mike, with my husband on a hike in Maine in 1998.

Thirteen years ago today, less than two years after our broken helath care system killed my son, it very nearly killed my husband.

He had felt a heaviness in his chest for several days, and with his family history — the men tend to die of heart attacks in their 40s and 50s — he went to the doctor. She ordered an EKG, which was alarming, so she called his cardiologist. They informed him our insurance required preauthorization for cardiograms, even after an alarming EKG. It could take a couple days.

Fortunately, he survived the wait, and the cardiologist sent us straight to the hospital. Do not stop at home, do not collect your pajamas and toothbrush, get to the ER. He was rushed upstairs and diagnosed with a nearly complete blockage of the artery knows as the “widowmaker,” and taken into surgery within an hour. Still, just as they got him onto the table, his heart quit. His doctor told me if it had happened so much as a minute earlier, he would have died. As it was, he wouldn’t be out of the woods for about 48 hours after double bypass. The wait imposed by the insurance company, which went against medical advice, very nearly killed him.

I got a little revenge two years later, when North Carolina was considering building its own Marketplace for the Affordable Care Act. I was part of a panel of stakeholders brainstorming and advocating. The rep from my insurance company stated that they would like to be able to keep costs down by insisting on preauthorization for expensive tests.

I raised my hand.

“Would that mean pre-auth for shoulder MRIs or, say, cardiograms after a bad EKG?”

“Oh, we would never do that,” she said.

“You’re gonna have to walk that back,” I said. As she reacted with shock, I added, “I have the record of when you made my husband wait 48 hours for pre-auth after a truly alarming EKG.”

More “shock” from her. “That’s inexcusable! Who’s your carrier?”

“You are.”

Suddenly, everyone was scribbling on their notepads. The insurance company would not get permission to demand pre-auth in cases where people’s lives were at stake. Sure, demand pre-auth for non-vital tests, but not for tests that diagnose life-threatening conditions.

The insurance company that wouldn’t sell insurance to my son and that delayed my husband’s cardiogramdamn nearly long enough to kill him is still in business. They’re classified as a nonprofit, but they are powerful and they, together with others, are loaded with cash to bribe lawmakers to maintain their power over our lives.

Yes, the Affordable Care Act forced Big Insurance to sell insurance to everyone, but copays and deductibles average almost $4,000 per person, and some of the networks are so narrow that if you fall ill on vacation, it could bankrupt you. This is at the same time nearly half of Americans say they can’t pay an unplanned expense of $400 without borrowing money.

So-called “Christians” are happy to spent $14 million on commercials to tell people Jesus loved them, but to live what Jesus told them — to heal, feed, clothe and love the poor and marginalized — seems to be beyond their capabilities. Instead, they vote for lawmakers who will impoverish them and then vilify them for being poor.

These are the same people who ask whether my son was working when he gor sick, implying that he was somehow undeserving of care, even of life itself.

Fifteen years ago today, I was in Raleigh, contemplating life without my precious son. Two years later on this day, I would be cotemplating life without my husband, all because we can’t do what every other industrialized nation has done and move to a system that covers EVERYONE.

So, if you want to talk morality, explain to me the morality of allowing tens of thousands of people to die every year, of healing only the rich, of putting and keeping people in poverty. If this is your view, you are most definitely not morally superior to anyone.

Battle fatigue

February 5, 2023 progressive living, Uncategorized No comments
Ron Mikulak, fussing with the fire in my backyard. He was forever fussing with things.

It’s been awhile since I’ve been able to sit down and write. It seemed as though my brain has refused to cooperate when I have something to say.

There’s been a lot to process. My brother-in-law died recently, after a long and painful illness. I watched him waste away just as my son did, and there was nothing I could do about it but try and keep him confortable and safe.

We die the way we lived. Whoever we are as we go through life is who we are as we lay dying, and Ron was no exception.

Ron was a brilliant and cranky man. Apparently, he was that way as a child, too. He loved spending hours fussing over model ships and airplanes while the other kids played baseball. He just loved fussing over things, especially food. He was an extrordinary cook, and an accomplished conversationalist. Dinners with Ron were always entertaining and delicious.

I was allowed in Ron’s kitchen to assist, but never to direct the preparation of a meal. It was, after all, Ron’s kitchen. So, when he told me to go ahead and bake brownies, with the only direction being, “If you line the pan with foil, you can lift the whole thing right out when it cools and then wrap it up,” I knew he really was dying.

As his strength ebbed, his incredibly well equipped kitchen became my domain. When things became too much, I escaped into the kitchen and fussed.

Ron was nothing if not tenacious. Not just stubborn, but determined. If something needed to be done in his mind, no one was allowed to rest until it was done to his satisfaction. He remained ambulatory through sheer force of will until days before he died. “If you don’t use it, you lose it,” he muttered as he stood, wavering, and grabbed his cane. “Let’s go for a walk around the apartment.” I was so afraid he would fall, and that would be the end. When I stop to think about it, I don’t think he would have minded if he “died trying” to walk.

Ron also had a legendary temper, and one of the largest vocabularies I’ve ever encountered. He could berate you with an eloquence that would leave you reeling more than the volume at which it was delivered.

Ron was never afraid to show his temper in public. He figured it it made him angry it must make others just as frustrated and he felt it his duty to put a stop to whatever bullshit was under his skin. He once stood up in a movie theater and declared the theater had shown enough previews and ads already and it was time to start the damn movie.

At a party once time, I was talking to an elderly civil rights lawyer about activism. His generation paved the way for the work I do today, so it was a rare pleasure. We sat in the corner talking until Ron came over and yelled, “Enough activism talk, already. Talk about something else! Mingle, for chrissake!” The room fell silent and Ron turned and went about his business, his job done. My new friend and I continued ouir conversation and no one ever mentioned it again because Ron did these things now and then.

But his intellect, his curiosity, his sense of humor and wit, his way with food — all if these made the temper worth it. Most of the stories I’ve heard about Ron’s temper are told with humor and deep affection. His former students (he was a high school English teacher and then a food writer) acknowledged he was tough, but also that he was one of the best teachers they ever had.

He married his beloved Annie, artist Ann Stewart Anderson, and they traveled. She really was the best thing that ever happened to him. She kept him on an even keel. She died in 2019, and Ron created a beautiful garden space outside his condo building in her memory. And under the plaque that says, “Annie’s Nook,” I want to add another: “Lovingly created by her husband, Ron Mikulak.”

Let’s all raise our voices

September 15, 2022 progressive living No comments
North Carolina still won’t expand Medicaid, even though people die every day here from lack of access to health care. Our legislators are playing political games while they have all the care they need and innocent others die.

I haven’t been writing much lately. I think it’s mostly because I’m frustrated that, 14 years after the death of my son from lack of access to health care, I still can’t make legislators care enough to fix this.

I have held rallies, I have spoken in public at every opportunity to explain how we can fix this. I have been arrrested six times trying to talk to legislators. I’ve never been violent, not have I ever condoned violence. Yet the violence of allowing people to suffer and die because of corporate greed not only continues, but is protected.

But I made a promise to my late son to work on this every day. I’ve been busy organizing, registering voters, speaking out … but it’s gotten really hard to just sit down and write, to tell other people’s stories, and then see the same bad actors getting elected again and again, to see things get worse instead of better.

I was naive enough to believe the Affordable Care Act would improve things but it turned out to be just another way to drive customers to Big Insurance, where customers are required to pay thoudsands of dollars before their insurance company has to shell out a dime.

I used to say the ACA would have saved my son’s life, but that’s no longer the case. An insurance policy no longer offers access to care. Deductoibles soar to $3,000 and above for an infdividual, which means if you don’t have $3,000, you don’t have access to care. This is at a time when nearly half of Americans say they would have to borrow money to pay an emergency expense of $400.

In other words, 14 1/2 years of activism has resulted in nothing but further degredation of the “system.” I know it’s hubris to hope one’s work will result in something positive, but to watch things get worse while tens of thousands die needlessly is downright depressing.

I’ve let it get to me, and it’s time to stop wallowing and start shouting again.

I’m busy registering people to vote right now because this is an election we can not lose. Period. Nothing good will happen on any front if we allow the corporate elite to hold power.

If you’re not registered to vote, do it NOW. And then be sure to vote. If we lose this one, we’re toast.

And if you think I’m too radical, ask yourself how the unnecessary death of your child might affect your outlook.

Time to rise up

May 3, 2022 progressive living No comments
Protestors in front of the Supreme Court, now controlled by the far-right minority of this country.

Chief Justice John Roberts called the leak of the draft opinion ending a woman’s right to control her body an “egregious breach of trust.” Funny, that’s how I feel about the far-right minority in this nation stealing the court to get this enforced-pregnancy plan through.

I am outraged by this, but I’m not surprised at all. I grew up among these people who claim to be Christian, but who wouldn’t know Jesus if he stood in front of them. They believed it was fine to lie, cheat, steal, even kill, if it’s for their version of Jesus.

They believe all women are “Daughters of Eve,” and are guilty of her “original sin,” which was seduction. It meant we were at fault if we suffered sexual violence. It meant we have to be controlled — really, closely controlled at all times.

I’ll be 70 years old in November. I remember when a woman couldn’t choose. I remember my 16-year-old friend being coerced into a marriage to an abusive boy because she was pregnant. Her baby died when she was 6 months pregnant and he threw her down the stairs. It was called an accident and he wasn’t charged with a crime. But had she skipped the marriage and being thrown down the stairs, she would have been charged with a crime.

In Massachusetts in 1971, the year I turned 19, I wanted to get birth control, but it was illegal for a doctor to presscribe it for me. The law was so paternalistic, he was the one who would be punished, not me. I apparently, was too childlike to be responsible.

So, we had no choices. None. If we were raped, it was our own fault for being women — for being where we were, wearing what we had on, talking to a man, having a drink, letting a man drive you home after a date …

Well, welcome back. Let’s try to think about what they want next.

Back in the 1960s and ’70s, we didn’t just lack access to birth control and abortion, we lacked access to credit in our own name. This meant my next-door neighbor who made three times what my then-husband was making, couldn’t get a credit card. She tried to buy a condo and the bank insisted her father had to co-sign the loan, even though she made more than enough money to afford the condo and her father was retired.

Women could be denied a job if they were pregnant or had children.

White women had it better than women of color, but we lacked rights. We lacked the ability to break free of a bad or abusive marriage.

And we died. We died from botched abortions. We died at the hands of abusive husbands. We died in childbirth.

What the far-right minority is telling us is that we don’t matter enough for them allow us dominion over our own lives.

And if we don’t matter, you don’t, either, unless you’re one of them.

They won’t stop here. They’re determining what your children can learn in school, and because they own the media, they get to tell you only what they want you to know. They’ve been plotting for more than 60 years, and they’ve been playing the long game.

Here we are. What are you going to do to stop fascism? I started by voting today, and I voted against all of them.

Life in the time of chaos

April 27, 2022 progressive living No comments

Arlo sleeps on whatever project I have in my lap. This helps keep me sane.

This is how I calm down at night. I knit, I crochet, I quilt, and I snuggle my cats. During the day, I do my best to work on the world. That gets more difficult all the time.

I can’t watch the news anymore, what with a former president and his cronies still trying to stage a coup, and the US Department of Justice still doing nothing about the leaders of the violent coup atempt on Jan. 6, 2021.

The country — no, the world — is being run by oligarchs, and we seem powerless to stop the slide into a global death spiral. The ice is melting, storms are becoming more severe. We have refugees streaming from war zones, who are being joined by climate refugees and the wealthy of every nation that can help are lobbying for closed borders. Their motto is “I got mine, get your own,” as they monetize absolutely everything.

This is late-stage capitalism. Privatize everything so it’s all owned by the few oligarchs and then keep everyone else in a permanent underclass.

If we don’t start taking the climate crisis seriously right now, we’ll be extinct in a couple more generations. Humans are clever, but not clever enough to breathe methane, which is being released into the atmosphere in increasing levels as the permafrost melts. Even the wealthiest can’t buy their way out of this.

It’s paralyzing. I look at all that’s happening — a madman ruling Russia and trying to bring the world to war so he can control it all, another madman trying to usurp power in the US and several of his co-conspirators still sitting in Congress, economic and ecological systems teetering on the verge of collapse, millions who refuse to believe the science of it all, and no one seeming to notice or understand.

My own “representative” has been caught trying to bring a loaded gun through airport security twice in just over a year, and has been stopped for speeding three times, and for driving with a revoked license. He’s been caught in dozens of lies and he was one of the insurrectionists at the Jan. 6 “rally” that preceded the attack on the US Capitol. As of today, he has faced no real consequences for any of his actions.

I’ve had a hard time even wanting to write about all that’s happening because I’m so overwhelmed all the time. I want to hide from the world and pretend everything is OK because that’s what everyone seems to be doing these days.

We’re going to have to find a way to work together, and we’re going to have to find a way to deprogram the people who believe the lies and propaganda of the extreme right. Even supposedly liberal news outlets and media platforms are owned by huge corporations or by oligarchs like Jeff Bezos, Mark Zuckerburg and Elon Musk, so some things just don’t get the coverage they should. We know what they want us to know unless we know where to look for real information, which is getting harder to find.

There’s so much to do, and that leaves us feeling helpless.

But we all have to stand up and start working to overthrow the oligarchs and save out planet. We need to start talking again and stop letting right-wing media whip us into a frenzy.

Both of our political parties are owned by the oligarchy and our primary elections are set up so they can decide which candidates make it to the general election. If you see a candidate who stands for universal access to health care, a living wage, voting rights, taking real action on the environment, reforming elections … rest assured that candidate likely will lose in the primaries to a very well funded “moderate.”

It may be too late for us to take it back, but we can’t stop trying. We have to shake off this paralysis and work together. There’s just too much at stake to stop now.

13 days

March 19, 2022 progressive living No comments
Michael with his hero, my dad. They were quite the team.

On this day 13 years ago, the intake nurse from hospice came. Michael was, as usual, in good form.

“Do you use tobacco?” she asked, clicking her pen.

He held up a half pack of Marlboro Reds. “I’m not gonna quit now.”

“Do you use drugs or alcohol?”

“I did, but I’m sober 11 years now.”

“What was your drug of choice?”

I could see the wheels turning as his eyes lit up.

“Whadaya got?”

The nurse looked up from her clipboard, startled, and Michael laughed.

“I was whatcha call a garbage head,” he said. “Whatever altered my conscoiusness was good with me.”

She laughed and seemed a little more at ease. This was someone who knew what was happening to him and decided he could still laugh. He intended to exit laughing. He had charmed his hospice nurse.

The nurse ordered a hospital bed and tray and a walker, which were delivered that same day. James and Janet arrived in the afternoon with the last of Mike’s belingings, including his gaming computer, which he and James had built. They used to build or refit computers for people who were newly sober and trying to put their lives back together. Some of those people were already getting in touch to visit and say goodbye, and for the next 13 days, our driveway and house would be full. You might think the mood would be sad, but it wasn’t because Mike saw every day as a gift and even though he was pretty much confined to a small bedroom, he was enjoying every moment.

It was a new chapter for us — Mike’s final chapter. I can’t even put into words how it felt to know this, but it was right about this time I decided my heart would stop when his did. That’s how I would cope with my child dying; I’d go with him. It wasn’t reasonable and I didn’t say anything to anyone, I just believed it.

We have a family joke that came from something my mother-in-law said back in the 1980s as my husband and I sat down to watch a program we had taped earlier.

“Oh, I’ve seen this one,” she said. “The guy dies.””

It’s the family spoiler alert.

“Oh, hey, you know what happens, right?”

Yeah. The guy dies.

We had just 13 days left with him.

14 years and it’s still no better

March 18, 2022 progressive living No comments
My Mike, clowning around on Jekyll Island. The gorilla is still there, and I have photos of other family members with it.

This day, 14 years ago, started out with my son looking up at me and saying, “I’m ready for this to be over.”

“Say the word, I said. “If you don’t want to do chemo anymore, just say the word.”

I was not ready for this to be over because I knew when this was over, he would be gone and I could never be ready for that. But we had been fighting for three years — actually for much longer than that because we couldn’t get anyone to care for him for years before that because no one would sell him insurance, so he had no access to the care he needed.

“No, I want to keep trying,” he said.

So, I got him in the car and we headed for Duke. As always, we headed east on I-40 and north on 146, and as we got to Durham, we passed the Mangum Street exit. He didn’t disappoint.

“Man gum,” he said. “I don’t know what that is and I don’t think I want to.”

Ask anyone who ever took him to a chemo appointment. He said it every time he passed that exit, and then laughed at his joke.

We thought he might have another few months. Chemo every two weeks might keep the cancer at bay for a short time. Every day — every moment — was precious.

But when we got to the clinic and he stepped on the scale, he had lost another two pounds. He was hovering around 102 pounds. The look on his face said it all. He really wasn’t ready to give up, but the chemo wasn’t helping and there were no more options. I would be bringing him home to die.

He thought maybe he could wait a few days, but the doctor told him it was time. He choked back tears as he said. “You don’t deserve this, Mike. You’re a good person and you don’t deserve this.”

On the way back to the car, Mike looked at me and said, “So, what do you think I have left, maybe two weeks?”

“I hope it’s more than that,” I said.

But it would not be.

His roommate and best friend, James, had cared for him, changing his dressings, making sure he was comfortable, trying to get food into him. But James feared coming home and finding he had died, and he didn’t think he could cope with that. We decided to bring Mike home and call hospice, and James would come to Asheville to be with us. Janet came too because even though they’d been forced to split so he could get Medicaid, they still loved each other.

We got him settled in and had a Hospice intake nurse scheduled for the next morning. James and Janet were just a couple hours behind us with the rest of Mike’s few belongings.

I remember every detail of this day in 2008 because I was very deliberate about remembering it. Time was so short and I wanted to savor every moment I had left with him.

On this day 14 years ago, we would have 14 days left with him. I couldn’t imagine life without him, and in some ways, I still can’t. Everything reminds me of him. I had hoped these anniversaries might get easier, but they haven’t. In fact, it gets harder every year as the echo of his laugh fades and his scent is erased from the leather jacket he wore everywhere.

And then I think about the million or so American families who have endured this same injustice from lack of access to health care and I’m furious that we won’t fix this. It’s not that we can’t, it’s that we won’t. It’s a choice to deny millions of people access to health care. It’s a policy choice to turn the other way and pretend we’re a decent, moral society. We are not.

On this day 14 years ago, I had to face the fact that my precious son was dying and there wasn’t a damn thing I could do to stop it, and now I have to live with the result of our backward, cruel and immoral policy decisions.

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