Grieving one son and worried about the other

This is what I’d like my back yard to look like in a couple months. It’s one of the ways I find peace in the spring and summer since my son died 12 years ago.

Isolation, Day 6: Is everyone still wearing pants?

It feels very strange to be home and know I’m going to be here for awhile. It’s another example of what my grandmother used to tell me: “Be careful what you wish for.”

How many times did I sigh and wish I could just stay home and chill for a few days? It’s beginning to look like it could be a few months. My husband and I decided we probably could enjoy a beer with friends online via Skype or Zoom, so we’re looking into that today.

Meanwhile, I’m going to order some seeds and plants online for the garden. I have lots of work I could do out there, and if I get that all taken care of, I could order some stuff from Home Depot, get onto YouTube and learn how to do some home repair and remodeling.

What makes this hard is that I have little to distract me from this time of year, of reliving the death of one son and fearing the death of my only surviving son.

What makes this hard is that I have worked for a dozen years to try and convince legislators and policymakers how important it is to get access to health care for everyone, only to be called a commie, a radical and countless other names. I tried to speak to them, only to be arrested time and again rather than have anyone hear me.

And here we are, facing a genuine health care crisis with one of the most broken systems on the planet. We could lose 2.2 million Americans — twice as many as would die if we had done the right thing and fixed this.

Twelve years ago today, all hope of any serious time with my son was dashed, as we learned the chemo wasn’t working and there were no more options.

Mike had his third chemo appointment this morning. His doctor had told him at the previous appointment that he needed to gain two pounds before today. I had gone into the Duke Chapel to find a quiet corner and pray for those two pounds. It seemed like so little to ask. Two pounds. Two fucking pounds.

I slept on the couch at his apartment the night before so we could get an early start, and when we settled in with a cup of coffee, he sat in the easy chair across the room and sighed.

“I’m ready for this to be over,” he said.

Maybe he was, but I wasn’t. I would never be ready to lose him.

We went to Duke and he stepped on the scale.

He had lost a pound. I still remember the look on his face as he turned to me and said, “I tried. I really tried!”

This was it.

His doctor’s eyes began to tear up.

“I want you to know you’re a good person and you don’t deserve what’s happening to you,” he said. I wished his original doctor in Savannah had felt that way — it would have saved his life.

There would be no more chemo. There would be nothing but Hospice.

The physician assistant advised him to come home with me.

“Go today,” she said. “Let people take care of you now.”

As we headed back to the car, me pushing Mike in a wheelchair because he was too weak to walk, he turned to me and asked, “So, how much time do you think I have left, two weeks, maybe?”

“Oh, I hope we have more than that,” I said.

We did not.

His heart would stop, and mine would break, two weeks later, almost to the moment.

Two more days

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.

Ten years ago today, we had a dozen or so people in the house. Along about mid-afternoon, Mike was napping and I was just getting out of the hot tub and drying off when the doorbell rang. I opened the front door to find a very angry woman standing on the steps.
“What the hell is going on with all these cars on my street!” she demanded. “What makes you think you can clog up my street with all these cars? I have to get in and out of here, you know and this is a menace!”
I listened for a moment as she ranted, a couple of my friends standing behind me in utter disbelief that someone could be so nasty without asking what was going on before launching into attack mode over cars on “her” street.
“Excuse me,” I said finally. “These people are here to say goodbye to my son. He’ll be dead in a few days and you can have your precious road back, although I’ve been led to understand you don’t own the road, we all do.”
Her jaw dropped.
“Oh, I’m so sorry.”
“You should be.” I started to close the door.
“Wait! Is there anything I can do?”
“Yes. You can drive carefully. None of us needs to add a wrecked car to our grief.”
A half hour later, Mike woke up and I told him about it. He burst out into a belly laugh. He always loved it when rude people got put in their place.
That would be his final belly laugh.
That evening, all our company would leave and it would be just me and Rob and Mike. James and Janet went back to Raleigh to take care of things there and would come back Wednesday.
Janet would lose her job because her boss said she couldn’t have any more time off. James’s boss would allow him the time he needed to say goodbye to his best friend.
Rob’s and my boss, Randy Hammer, had told us to take whatever time we needed.
Randy had told me a few days earlier he was praying for a miracle, and I told him that was nice. I did appreciate the prayers, I said, but there wasn’t going to be a miracle and I would appreciate it even more if he would pray for strength for those of us who were left behind.
He was a little shocked that I would give up, but I had to be realistic. I didn’t want to have false hope. In my mind, praying for a miracle just means you’re not good enough to get one when it doesn’t happen.
The people in my childhood church always blamed the victim for not praying hard enough or not believing enough when no miracle happened. I won’t fall into that trap. If anyone deserved to live, it was Mike. He was kind and generous, smart and funny. But he would die because he didn’t have insurance and he didn’t have a doctor who gave a rat’s ass about him until it was too late to save his life. He would die, just like 45,000 other Americans that year because our health care system is broken and the powerful people who have all they access they need are too greedy and corrupt to fix it.
Even now, 10 years later, Republicans’ first question on hearing his story is, “Was he working?” As though we have criminalized poverty to the extent that we believe all poor people are lazy, as though unemployment should be punishable by death. And when I say that, the response is always, “Well, some people just want a handout.”
No. Nobody wants a handout. I’ve worked with people in poverty in one way or another for more than 30 years and I’ve never met anyone who just wants a handout. Not one soul. What people want is to live in dignity, working and being paid enough to meet basic expenses in exchange for a week’s work. People want access to health care, a decent education, safe housing, healthy food, clean water — and they should all have these basic things.
For the final three years of my son’s life, he lived in abject poverty because he had to leave his wife to be eligible for Medicaid and it took 37 months to approve the disability payments he had earned over 18 years of working, and his first check didn’t come until nine days after he died.
On this beautiful spring day 10 years ago, we had just two more days with him; 48 hours to soak up enough of his spirit to last a lifetime.

What a devastating day

This is my son, Mike, who paid taxes right up to the time he got sick. After his Stage 3 colon cancer was diagnosed, he became one of the people Mitt Romney doesn't care about.

This is my son, Mike, who was so impoverished by the time he died that he left behind very few belongings. One of those was stolen last night.

I have very few things that belonged to my late son, mostly because our broken system impoverished him to the point that he had very few belongings.

This morning, I found that one of them, his iPod, had been stolen from my car. I bought it for him a few weeks before he died because he had always wanted one and we didn’t know whether he would survive to see his first disability check.

As it turned out, he didn’t. He was dead nine days before that first check arrived, but at least he’d had the chance to enjoy that iPod for a few weeks.

All day, I have felt his loss anew, a stabbing grief that won’t go away. His photos were stored on that device and it was in a compartment in my car, together with a charging cord.

The thief also got away with a projector that belonged to my nonprofit, WNC Health Advocates, a Bluetooth speaker and some other odds and ends, altogether about $1,000 worth of stuff.

When I reported it at the Sheriff’s Department, the deputy behind the glass acted as though I had invited the thief in and handed him my belongings because the driver’s side door was unlocked.

“What are you doing with a thousand dollars worth of stuff in your car, anyway?” he asked, scowling at me.

Not only did I feel violated by the theft, I was blamed. I was the person at fault.

I was left wondering if I would have been so shamed and blamed if I had been a man.

I was so upset, I came home and called Sheriff Van Duncan, who apologized profusely for the way I had been treated.

Meanwhile, I have struggled to hold back tears all day. This is more than a loss of a thing — that thing was connected to my beloved son, and it’s one less┬áconnection I have as the days since I last was able to touch him and hear his voice add up.

I left a profane post on Facebook after I discovered the loss, but I know I won’t see that iPod, or the photos he had stored on it, again. The f-bomb helped for a fraction of a second, but it would help more if I could find the person responsible and explain what that small thing meant to me. My first impulse would be to smack him (or her) upside the head, but I wouldn’t actually do that because physical violence never solves anything.

But I would like that person to understand they pain their actions have caused.

It’s bad enough I have to face the rest of my life without my son, but can’t I at least have this one small connection to him?

 

 

 

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