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.

Black tag of courage or a Liberal learns about war

I was a Paramedic in the Air Force in the early 90’s.  Joining the military was one of the better decisions I have made in my almost 50 years and even at the old age of 27, the training I went through gave me a wealth of discipline I previously did not have. There’s a plethora that I completely disagree with in how our military personal are utilized, but I was lucky to be at their disposal before the right wing, corporate quest for empire began to pick up speed in earnest.  Pretending to assist the wounded and pick up dead soldiers on the battlefield is all fun and games until it really happens.

The Air Force Medical Core / Paramedic training was (at that time) conducted at Shepard Air Force Base in Wichita Falls, Texas. I love Wichita Falls, but that’s another post. We slept in tents, ate MRE (Meals Ready to Eat) out of plastic pouches plucked out of 55 gal. drums of boiling water, rescued the pilots of a long forgotten war from their rusting C-2 Greyhound and learned about triage. The pic to the left was taken during my time at the Med Red (Medical Readiness) training grounds somewhere near or on Shepard Air force Base.

The one and only time I ever argued with a superior officer was in triage class over the black tag. In the military they call the black tag “expectant” and in the civilian world the term “morgue” is used.  The protocol for the black tag soldier was a simple one… pain meds until dead. How could anyone not do all that could be done to treat all the wounded, no matter how badly they were injured, I asked? To the instructor’s credit he was very kind to me as he explained that war is not about helping the few, it’s about helping the many. Maybe I was not the first bleeding heart liberal he ever had in his class. That was probably lesson one for me on my way to seeing what all soldiers probably know, even the person of peace is sometimes called upon to fight and die for it. A person who hates war must sometimes wage war to stop it. Until humans decide to deal with our differences differently, create a world where despots have no place and stop ignoring that our precious freedoms depend on all of us finding our common ground and contributing what we can to that common good… there will always be bloodshed.

I wrote the following letter to the editor of my conservative, East Tennessee town in early October, 2004. It was my first act of publicly putting my thoughts in front of the Republican faithful. I didn’t get lynched and a couple of people even told me, in confidence of course, that they felt the same way.

The Policy is not the Soldier

A Memorial Day flashback to October 2004

The Republican party would have you believe that their policy is the Soldier. They would prefer that no one make the distinction between their personal agenda and the Soldier that dies in Iraq.  As Mr. Bush’s comments clearly stated: that would simply send the wrong message, “mixed messages” to our brave troops.  How indeed could they follow a leader of questionable intent, morals and leadership?

How indeed? The Republican Party’s story is that this is all about freedom, bringing democracy to the middle east and fighting terrorists wherever they may be.  Those of us who don’t believe that story is entirely true are considered by many as un-patriotic and un-supportive of our sons and daughters fighting and dying in Mr. Bush’s war.

Every person that I meet who cannot allow my right to that opinion has cited the same sentiment, that it disrespected the soldier. No! The Soldier and the policy are not the same thing.

As a Gulf war veteran, I respect those who have chosen to protect our country. I do not respect a commander and chief that would spill their blood for profit, power and a personal vendetta while lying about it.

This president seriously underestimated the consequences of his actions; he will not admit his error in judgement and he hoping that Americans will not be able to separate his failed policy and premature actions from the brave men and women he put in harm’s way.

The spin is relentless in keeping the idea going that one cannot disagree with poor decision-making without disrespecting the troops, and sadly, it seems to be working.  I imagine Mr. Bush and his cronies having a good laugh at just how much the American people are willing to swallow.  And after numbing us out with the unprecedented fear this administration generated in the wake of 9/11, the religious right was waiting to take us all in and show us the error of our ways and their path to salvation.  The path of writing discrimination into the constitution, the path of altering the idea of separation of church and state, the path of intolerance and judgement.

The right to disagree, the right to speak out belong to us all for the moment. Even Mr. Bush and his ilk have the right to express themselves under the same principles, but they do not have the right to legislate for their own purposes and enrichment. It is our duty as informed citizens to keep them in check for the day they overtake us the “other” terrorists will be the least of our worries.  that will be the day none of us are free any longer, not even the right-wing, Republican, Moral majority, Christian Coalition, NRA life member.

Happy Memorial Day and Peace Y’all

 

 

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