13 days

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.

One final belly laugh

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

 

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

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

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

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

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

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

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

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

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

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

And I closed the door.

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

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

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

The nasty neighbor has never spoken to me again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

It was Easter on this day in 2008

My sons, Danny and Mike, on Easter 1978.

Eleven years ago today it was Easter. Flowers were blooming, the air was warming, and my house was full of people here to say goodbye to my son.

Shannon and the kids celebrated with an Easter egg hunt in my back yard, and Mike watched some of it from the Mike-around on the deck.

I was trying not to think about death in this season of rebirth, but it lurked around every corner of my existence.

My house was abuzz with activity because Mike was dying.

People were visiting, not because of the holiday, but because of Mike’s impending death.

The food on the kitchen table and in the refrigerator was here because people brought it so I wouldn’t have to worry about cooking because Mike was dying.

I was taking more time than I should off work because Mike was dying. Soon I would be out of vacation days and would have to take unpaid leave.

I would find out a couple of days later that the publisher of the paper where I worked had overruled the editor who was charging me with vacation days after he discovered my colleagues had gotten together and donated 33 vacation days to me and my husband. One by one, they had gone into Human Resources and offered between one and three of their vacation days.

The publisher stood in the middle of the newsroom and announced that everyone would have their vacation days returned and my husband and I would be able to take whatever time off we needed and still be paid.

I’m still grateful for that, by the way.

There are so many things we take for granted, but the support of friends can’t be overvalued in times like this.

People from work and people from church visited. The contingent from Cary left late in the afternoon, leaving the house a good deal quieter. Mike seemed to appreciate it.

I remember the constant aching in my heart. I remember holding back tears every time I saw him, now weighing less than 100 pounds, unable to get up without help, unable to walk without the walker, unable to eat anything more than a little nibble.

But as soon as he opened his mouth and spoke, it was the same Mike. He was still irreverent and still funny. But my time with him was so damn limited now. I wanted to squeeze in every second I could with him. I even began to resent the naps he needed to take several times a day.

I need people to know that the pain I felt 11 years ago is still fresh, still unbearable after all this time because he should still be with us.

I need people to know that there are a half million others whose families feel this same pain because that’s about how many people who have died from lack of access to health care since my son died.

If this is OK with you, stop calling yourself “pro-life” or “Christian.” You are neither.

Jesus told us to heal the sick. He never charged a co-pay or a deductible. He never asked whether the sick person was working. He never asked to see an insurance card.

We are the only industrialized nation in the world that hasn’t found a way to do this. There are no excuses. I reject all of them because every other nation has access to care for ALL people.

I will not stop pushing for this. I will not go away. I will not give it a rest.

I will fight for access to care for every human being, because I DO follow the teachings of Christ, and because I wouldn’t wish this on anyone — not even on all the presidential candidates who insist this can wait if we’ll all just be patient. If you are one of these candidates, please know that you will not get my vote under any circumstances.

On this day 11 years ago, it was Easter, a day of rebirth. We would have just one week and two days left with him.

My vote is reserved for someone who will fix health care

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

Eleven years ago today, hospice came.

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

Part of the visit was an intake interview.

“Do you use tobacco?”

“Yup and I’m not quitting now.”

“Do you use drugs or alcohol?”

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

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

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

He got the reaction he wanted, a shocked look.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

Murder. That’s what ‘repeal and replace’ really is.

“You die and you die and you die …”

The House will vote today on whether to murder tens of thousands of innocent Americans.

While you might not think the repeal of the Affordable Care Act and a replacement that takes health insurance away from some 24 million Americans is murder, but it is the premeditated removal of access to health care.

In my book, that’s murder, just as the death of my son was.

My son didn’t have to die. He shouldn’t have died. But he was denied insurance because a birth defect was a pre-existing condition. Because he didn’t have insurance and he didn’t have thousands of dollars in cash, he was denied care.

Think about this for a second.

My son was denied care when he got sick.

He was turned away, even though he was in pain and obviously sick because he didn’t have insurance.

Michael, age 3, playing with his food.

He committed no crime, but he was handed the death penalty for being born with a birth defect.

Yes, he went to the emergency room. But the emergency room only has to stabilize you, so my son was given pain pills and a laxative when the problem was a malignant tumor blocking his colon.

He went to the emergency room three times and got no help.

He was denied a colonoscopy for three years running — even though he’d already had pre-cancerous polyps removed by the time he was 25.

Yes, Republicans, he was working when he got sick, but he got too sick to work — try reporting for a shift waiting tables when you have stage 3 cancer.

And if you think you’re safe because you have employer insurance, this new law allows states to remove the protections of mandated coverage from your plan as well.

That’s right, you could lose maternity coverage, addiction treatment, mental health coverage. And while you may not want maternity coverage because you’re a man, your wife or daughter could lose a child because of lack of access to maternity care. In fact, you could lose your wife or daughter.

But go ahead, laugh and say, “like I need maternity coverage, chortle, chortle.” Maybe it’ll be a little less funny when your wife or daughter dies from lack of access to care.

And if you think they don;t know what they’re doing, consider this: They kept all the protections of the Affordable Care Act for themselves in this bill. We can die, but they won’t because they wrote the law to protect themselves and their families.

These murdering thugs belong in  jail, not in Congress.

But because they’ve been able to convince enough Americans to vote against their own interests, because they’ve been able to gerrymander their districts to prevent a Democratic majority, they get to murder tens of thousands of Americans.

If the ACA goes, I lose coverage because I have asthma.

If the ACA goes, 22 million Americans are in the same situation I am.

Are you one of them?

I have tried to appeal to my congressman, Mark Meadows — a man who claims to be “pro-life” and “Christian.” He is neither. I have called, written, e-mailed and faxed appeals to him, trying to appeal to his better nature.

As it turns out, Mark Meadows has no better nature. Nor do Robert Pittinger, Patrick McHenry or Paul Ryan. These are not reasonable people. These are criminals who belong behind bars for their part in this heinous crime.

You can say I’m a little over the top with all of this, but if you lose a loved one to this mess, you’ll understand.

If you don’t have health insurance, you are not a criminal, as much as those in power would paint you as such. Why else would their first question on hearing my son’s story be, “Was he working?”

Perhaps they should have to watch their children die. Perhaps that’s the only thing that will work to change their minds.

I really do hope there is a Judgment Day. I want to be there when they’re condemned. I want to see it happen.

 

 

Nine years ago today

This is my son, Mike, a kind and wonderful young man. Nine years ago today, I brought him home to die.

Nine years ago today, I brought my son home to die.

In my heart, I feel as though it could have been yesterday.

I remember everything about the day because it’s etched on my heart as the day his impending death became real.

We had coffee in the living room of his apartment after his roommate and best friend, James, left for work. From across the room, Mike looked up at me and said, “I’m ready for this to be over.”

I was not ready. I would never be ready. I’m still not ready to be without him.

We had an appointment for his third chemo infusion, hoping to give him a few more weeks or months.

But he hadn’t gained any weight at the last appointment, and his doctor had said he needed to put on two pounds. I had gone to the Duke Chapel to pray for those two pounds. It didn’t seem like too much to ask. Two pounds.

But it wasn’t to be. We drove from Cary to Durham to the cancer center at Duke University Medical Center. We passed by Mangum Street and he laughed and asked what I though man gum was.

“I can’t help it,” he said. “I think that every time I pass that street.”

We got to the clinic and he stepped on the scale. He had lost another pound.

“I tried!” he said. “I really tried!”

I’ll never forget the look on his face — frustration, disappointment, disbelief.

Dr. Herb Hurwitz came in and told us there was nothing more he could do. His eyes filled with tears as he said, “You’re a good person, Mike. You don’t deserve what’s happening to you.”

I remember thinking it would have been nice if Dr. Patrick Hammen in Savannah had felt that way. Perhaps if he had, Mike and I wouldn’t he hearing these words from Dr. Hurwitz now.

But Hammen had given up on Mike before he even started treatment for his recurrence — which wouldn’t have happened if Hammen had been willing to take payments instead of demanding cash up front for a colonoscopy three and four years earlier.

Hammen had been very matter-of-fact when he told Mike the cancer was back and a cure was unlikely, and he never came back to check on Mike during his nine more days in the hospital.

And here, Dr. Hurwitz was weeping as he told us there was nothing more left to do and that Mike should come home with me and enjoy what time he had left.

As we were leaving the clinic, I was pushing Mike in a wheelchair and he looked up at me.

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

“I hope it’s more than that,” I said.

But it was not.

We called James and Janet and they both met us at the apartment. They had packed up a few things they knew Mike would want, including his gaming computer, his game console and games, a few books and all his plaid flannel pajama bottoms and T-shirts, underwear and ostomy supplies. It all fit in the back of my Honda CRV.

At that point, these few things were about all he owned, except for a massive antique desk, which would go to Janet.

James and Janet would come out to Asheville the following day; Mike and I would do the four-hour trip alone, stopping at an outlet store about halfway home so I could get a memory foam pillow for his bony butt. I think it was as much an excuse for him to have a cigarette as any soreness in his backside, but I was willing to indulge him.

He weighed about 102 pounds at this point, but he would lose more since his body had stopped absorbing any food.

For the next two weeks, I would share him with friends and family from as far away as New York and New England, from Savannah and Cary, and from Asheville. All of us tried to soak up as much of his presence, wisdom, humor and love as we could. We knew it would have to last us a lifetime.

Nine years ago today, he came home to die. I would have given my own life to spare his, but it was not to be, and the pain of losing him has not abated. I was so unwilling to imagine life beyond his death that I convinced myself my heart would stop when his did. It didn’t, of course, and all I know to do now is to fight for access to health care for everyone because no one should have to go through what my family has endured.

On the day he died, some 45,000 Americans were dying every year from lack of access to care. Things are somewhat better now because more than 20 million people have access to care than had it then, thanks to the Affordable Care Act.

But the occupant of the White House, the Speaker of the House and other Republican politicians want to go back to that. Perhaps if they had to watch their own children die the way I had to, perhaps if they had to live with the unspeakable pain I do, they would change their minds.

But I wouldn’t wish that on anyone — even on them.

Nine years ago today, I brought my child home to die.

We would have two more weeks with him.

 

 

The new opium war

In the 19th century, the British sent tons and tons of opium into China knowing full well its addictive properties and the health problems and deaths that would follow.

The British wanted to trade with the Chinese, but the insular nation wanted little to do with the outside world. China’s ruler insisted that instead of trading for British goods, it would only sell the porcelain and tea the British people wanted for silver. The British didn’t want to deplete their silver reserves, so they developed a work-around — they sent opium into China illegally, demanding payment in silver, which they then used to buy Chinese goods.

In other words, the British sabotaged an entire nation with opium. People who are addicted are not interested in fighting for their rights; all they care about is getting more opium. And even though the sale of opium to China was illegal, the British could always find a corrupt official who would deal with them.

The mess finally led to two wars, known as the Opium Wars, which the British and their allies (France and the United States) won.

So, what does this have to do with today?

In the 1990s, drug companies, particularly Purdue Pharmaceuticals, came out with a new pain killer called Ocycontin, and almost immediately, it began to be abused.

But Purdue and the others kept insisting it wasn’t addictive if taken properly, and doctors continued to prescribe it, even where it wasn’t necessary, when something else could control the patient’s pain. The experts, after all, insisted it was safe.

Over the last 20 years, millions of people have become addicted. I know a number of them, and in the last year or so, three have died of overdoses. One died of a pain pill overdose and the other two died from heroin overdoses. People who are addicted to pain pills often turn to heroin because it’s less expensive.

Pain clinics began to spring up, especially in Florida. These weren’t legitimate pain clinics, but places where people who were addicted could go get an easy prescription.

Patients go in by the droves and are called back to see the doctor a dozen at a time. The doctor asks whether they’re still in pain and they say they are. The doctor writes each of them a prescription.

Now, are these addicts paying attention to their rights being taken away by the 1 percent, bit by bit?

Not so much.

Are they watching while our so-called leaders march us toward a police state?

Nope, they’re looking for more pain pills.

And, if they’re caught, they’re thrown into a justice system that makes them pay their own costs, which for many means there is no escape. People tend not to hire ex-convicts, so paying the tens of thousands of dollars is impossible.

So the question becomes, was this mass addiction deliberate, or are the 1 percent just happy with the coincidence?

That’s not a question I can answer, but I suspect it’s deliberate now. It’s the perfect distraction because not only does addiction take the user’s mind off what the 1 percent is doing to rob us blind, it also distracts the family and friends of the addict, who tend to concentrate on trying to get help for the person.

I refuse to take opiates. I don’t care how much I hurt. If I’ve had surgery or an injury, it will heal and I can manage pain with ibuprofen, naproxen or Tylenol until it does.

If I had cancer or another painful and terminal condition, I probably would agree, but as it is now, I don’t fill prescriptions for opiates. I’m not going to chance it.

I’ve seen what opiate addiction can do. It disables, then kills.

We know this, but we continue to addict more and more people, then we conveniently blame those people for their illness and tell them we don’t have enough beds in rehab to help them kick the addiction.

It seems to me this is deliberate now. Perhaps it wasn’t in the beginning, but it is now.

Yes, I’m jealous of Debbie Reynolds

Debbie Reynolds was lucky enough to be able to join her daughter, Carrie Fisher.

If you have lost a child, you will understand why I’m jealous of Debbie Reynolds.

It’s impossible to express the grief of losing a child. One friend described it as losing a huge piece of her innards, as though something had been torn from her. It was a physical pain.

Another friend recalls falling to the floor and screaming because there were no words and she lost the strength to stand.

We carry a hole in our hearts that can’t be patched, and it never, ever stops hurting, even for a moment.

I remember I had it in my head that my heart would stop when my son’s did. I couldn’t imagine life without him.

I sat by him, holding his hand and telling him how much I loved him as he breathed his last.

“He’s gone,” the nurse said after he stopped breathing.

But that couldn’t be so, I thought. I’m still here, and I can’t be here after he’s gone.

But there I was, alive and pissed.

I hadn’t told anyone I would die with him; I didn’t think I had to. Everyone would know why my heart stopped.

But then it didn’t stop.

I tried to will it to stop, but it kept beating.

In eight and a half years since he died, I have wondered every day when I will be able to join him.

I feel my heart beat and the injustice of it still makes me angry.

Yes, I have another child and four grandchildren, and a great-granddaughter. Yes, I have nieces and nephews and siblings whom I love very much. And yes, I have friends — wonderful friends, a ton of them.

But I don’t have Michael.

I know this doesn’t make sense to you unless you have lost a child, especially if you lost that child to injustice.

He shouldn’t have died.

If he had been able to gain access to health care, he would still be with us.

If Carrie Fisher had been downtown instead of on an airplane, she might have gotten help in time. She might still be alive, and so would her mother.

If, if, if …

But the reality is my Michael is gone and I’m still here.

When I heard Debbie Reynolds had suffered a severe stroke, I felt a tinge of jealousy.

“She’s going to die,” I told my husband. “She gets to go be with her daughter.”

Sure enough, an hour later, he was online and saw she had died.

“Lucky,” I muttered under my breath.

My son has come to me a few times in extremely vivid dreams since he died. Don’t try and tell me he wasn’t there because I know he was.

When I see him, I tell him I want to go with him. I tell him I don’t want to be here any more.

But every time, he says the same thing: “That’s not an option now, Mom. You have work to do.”

Since he died, I have fought every day to expand access to health care to all people. I don’t say all Americans because there are plenty of people who aren’t Americans who need health care too.

I have gone to Raleigh and to Washington. I have spoken to people in power and told them there should be no test for access to care. Everyone should have it, even if we have to give it to them without requiring them to have a full-time job or to make more than poverty wages.

I have called them out when they say they are “pro-life” but in the next breath try to rationalize why we can’t allow everyone to have access to quality care like most of the rest of the world does.

And in the eight and a half years since my child died, we have made a little progress, but now we are poised to step backward, and all the work I have done to try and prevent more people from dying the way my child did appears to have been for nothing.

I have told his story again and again, but people seem to think he was the exception, that most people who die from lack of access to care somehow deserved it.

“Screw work,” I want to say, but I know it won’t do any good.

I can’t go yet.

Debbie Reynolds was the lucky one.

I have to stay here, without my son, because I have work to do.

Four dead, three troopers hurt

A protester at Wayne LaPierre's press conference Friday injects a little truth into the proceedings.

A protester at Wayne LaPierre’s press conference Friday injects a little truth into the proceedings.

It’s what you call irony.

National Rifle Association lobbyist Wayne LaPierre was still talking, telling us we need more, not fewer guns, that armed teachers are the solution to mass shootings in schools, as a man walked up and down a street just outside of Altoona, Pa., shooting people, killing four, according to early reports.

Among the injured are three —armed — state troopers. These are people whose job it is to stop people with guns and he shot three of them. We don’t know yet whether any of the dead are troopers.

It seems to me that something is trying to tell us that LaPierre and his ilk are full of shit. More guns is not the solution to gun violence.

Do we put guns on school buses next? Do we arm crossing guards? Remember, this latest shooting was a man walking up and down the street.

Where does the arming cease? Do we provide Sunday school teachers with an arsenal, just in case?

I’m tired of the killing, aren’t you?

I don’t think we should spend another moment listening to the NRA. I don’t even care of you’re a responsible gun owner who loves target shooting and hunting. If you believe more guns will stem the violence, you are wrong. Period.

I have tried to respect other opinions because I have a lot of friends who are responsible gun owners, but we need to control guns. We need to stand up to the bullies in the NRA and tell them where they can put their guns and ammo.

I have listened to the “other side” of the gun debate and I have reached the conclusion that they no longer deserve our time and respect. The NRA represents gun manufacturers, not gun owners. I don’t even care of we repeal the damned Second Amendment. Our gun “laws” now have nothing to do with the founders’ intentions anyway.

We have the Second Amendment because George Washington didn’t believe we needed a standing army; that well-regulated militias would suffice. It wasn’t meant for every person to have an arsenal of weapons of mass destruction. That was the totally twisted interpretation by Supreme Court Justice Antonin Scalia.

As my husband says, “Piss on your Second Amendment rights! What about the rights of innocent people to live their lives?”

It’s time to regulate guns. It’s well past time, actually.

To those who disagree that increased regulation will help stem the tide of violence, with all due respect, piss off. I’m tired of listening to it as people die by the tens of thousands in this country.

 

The ‘hypothetical’ young man

My very un-hypothetical son, Mike, who died because he didn't have insurance.

I didn’t watch the GOP debate, but before I went to bed Monday night, I checked the headlines.

There it was: video of people cheering, “Yeah!” at the prospect of letting a “hypothetical” young man die rather than care for him. No one, not the candidates, not the moderator, not anyone in the audience reprimands them.

There is nothing hypothetical about it. About 45,000 people die every year — one every 12 minutes — because they don’t have insurance. The vast majority of them do not CHOOSE to be uninsured; they either can’t afford the premiums, or like my son, the insurance companies won’t sell to them.

My son had a birth defect, which is a pre-existing condition. It left him vulnerable to cancer, so he needed colonoscopies every year. He couldn’t get them, though, because he didn’t have insurance and he didn’t have the money to pay cash-up-front for them.

So, here is how it went for my not-hypothetical 30-year-old son:

First, he gets stomach pains. Eventually, they get bad enough so he decides to go into debt to see a doctor, who informs him he can’t have the medical tests he needs because he’s uninsured and he can’t pay the full cost, in cash, up front. The doctor writes in his medical record, “Patient needs a colonoscopy but can’t afford it,” and bills the patient for the appointment.

A week or so later, the patient goes to the Emergency Room, where he’s told it’s persistent gastroenteritis. Still no colonoscopy. The patient is unable to move his bowels and wonders why it would be diagnosed as gastroenteritis. He is billed for the ER visit.

A little more time goes by and the patient is still suffering, so he goes back to the ER.  This time the doctor says he has an ulcer and gives him an antibiotic. He is billed for the ER visit and the medicine.

Still a few more days and by now the patient has lost 30 pounds and is still in pain, still unable to move his bowels. His family is frantic with worry, but no one has enough money to pay cash up front for the colonoscopy. He goes back to the ER and is told he probably has diverticulitis. He is given a strong laxitive and sent home. He is billed for the ER visit and the medication.

The next week, the original doctor agrees to do a colonoscopy and bill the patient, who will be allowed to pay over several months. The patient is sent home without hearing any results. What he doesn’t know is that the doctor didn’t even finish the procedure because the colon was completely blocked. He never told the patient.

Three weeks later, the patient is down to 112 pounds. He is 6 feet tall. He is vomiting fecal matter and his kidneys are shut down. He is hours from death. The doctor realizes he probably could get in trouble for neglecting the patient so badly, so the patient is admitted to the hospital, where it takes five days to stabilize him.

By now, the patient’s cancer is Stage 3. It has spread. A charity pays the hospital, the doctors and the pharmaceutical company for chemo and radiation, so he at least gets treatment.

But six months later, the patient again is in pain and vomits up everything he eats.

This time, the doctors take a wait-and-see attitude, even though they know the radiation has caused another blockage. The patient drops to 104 pounds and family members threaten to take the story to the media as his doctors refuse to feed him intreavenously. They finally agree to feed him and a few days later, he is wheeled into surgery again.

The pathology lab finds “a few viable cells,” and the patient is told he will die. The doctors don’t bother to come talk to him about further treatment, even though he is on the oncology floor for another week. They don’t bother to treat a life-threatening infection in his incision.

The family searches and finds a doctor who will consult with the patient for about $400; as soon as he sees the patient, he knows he has to adopt him to give him any possibility of even short-term survival.

There’s more chemo — the patient has to leave his wife so the giant pharmaceuticals will get paid for his meds through Medicaid. The patient has no income because he has yet to be approved for disability, as though someone with his medical records might be scamming the system.

His family and friends gather round to support him, both financially and emotionally, but he was neglected too long, and he dies on April 1, 2009. His first disability check comes nine days later.

The doctors got paid by the charity; the pharmaceutical companies made hundreds of thousands of dollars from his chemotherapy. But the patient spent three years in horrible pain and in abject poverty. He was treated as though he wasn’t worth saving until he was adopted by a doctor with a heart, although by then it was too late.

His family still grieves, and always will. His friends still tell stories about his amazing courage, his gigantic heart and his decidedly off-kilter sense of humor.

He was not a bum; he was never lazy.

He was my son, and he didn’t deserve to be left to die.

For those whe cheer the thought of his death, I just want you to know I would never wish the same thing on you or anyone you love.