I drove out to Cary today to help James go through the last of Mike's stuff. He's still struggling, and it's not easy for him to do this. But being there and seeing things in his handwriting, looking at the photos he took, just touching his things -- it was comforting.
I didn't bring a whole lot home, but it was good to see James and know he is coping. James was Mike's best friend and the two of them helped each other through a lot of bad stuff. I told James he was adopted just after Mike died and Danny told him he'd never get rid of us. And he won't.
I had an early dinner with Janet, and we talked about the rally in August. Very exciting.
Let me start by saying I'm a firm believer in people coming back to visit the ones they loved after they've died.
My grandmother believed it, and I guess she passed it on to me. Her sister, Eunice came to her when she was dying to tell her it was OK. I remember my father thinking it was pretty bizarre, but I think she did see her sister.
After my sister died, I had several incredibly vivid dreams about her, and I believe we were speaking. Ellen and I always had a strong connection.
The first time she came to me was to tell me to finish a tablecloth she had been making the way she wanted me to. We used to debate whether pieces of a project should be stitched together or crocheted. I started to crochet the pieces to a tablecloth she had started, and when I went to sleep that night, there she was, hands on hips.
"It's my project, dammit! Use the tapestry needle, not the crochet hook!"
I switched to the needle.
The next time, I walked into her living room in another vivid dream and there she was, sitting on the couch. When I spoke to her, she sat bolt upright and grinned.
"You can see me! You can hear me!"
I said I could, but I wondered what she was doing there.
"Katherine (her spouse) still needs me," she said. "I have to stay here awhile."
When Shannon and I were at the house a couple months later, she told me she could feel her mother's presence there.
The third time, I dreamed I was cleaning up after a huge, messy party, and Ellen showed up to help me. She was healthy and her old irreverent self. A friend of mine walked in and I introduced her.
"I thought she was dead," he said.
"I am," she said, grinning. "But I'm always here to help you."
That was just before Mike's pain came back.
The night before he died, we talked about Ellen coming to fetch him home. I could see her pushing angels aside.
"He's my nephew, dammit. I'll get him."
And so she did. Just before he died, he reached out and called her name.
Two weeks later, James asked me if Mike had come to visit me.
"No, he said you'd need him more," I said.
Well, he had been to visit James three times. I never told James about the third time Ellen came to see me, but his dream was nearly identical,as though Ellen had told him what to say.
"It comforted your mother," she probably told him. "I'm sure it will help James."
Early this morning, he came to talk to me. He was healthy and whole again, wearing blue jeans, as he did before he got sick, and a T-shirt. His teeth were white again, like they were before chemo, and his skin clear.
We talked about how much I miss him, and how hard I'm trying to be OK.
I asked if he was OK, and he said he's at peace.
"When you get close," he said, "you can tell you really want to go there."
So, as I assumed, I know now that he is at peace. He is whole and contented.
And I miss him more than I can say.
Just saw this online:
The number of Americans with diabetes increased by 15 percent in two years to 24 million, according to the Centers for Disease Control and Prevention. About 8 percent of the population now has the disease, mainly Type 2 diabetes, which is linked to obesity and sedentary living, the agency said in a report using data from 2007. A quarter of people ages 60 and older had diabetes, the agency said. The number of people worldwide with diabetes will double to 366 million by 2030, according to the World Health Organization, which calls the disease an epidemic. Most people with diabetes have resistance to insulin, which the body uses to convert blood sugar to energy. The C.D.C. report was its first update of the prevalence of diabetes since 2005, when it reported that about 21 million Americans had the disease.
What that means is that 21 million people need to monitor blood sugar carefully and take medication -- none of it cheap -- to avoid devastating side effects like blindness, kidney failure, amputations because of infections, heart attacks and stroke.
Studies have shown again and again that people who are able to manage their diabetes have fewer side effects. But diabetes supplies are expensive. Blood-glucose monitors, test strips, syringes, oral medications, when covered by insurance, are affordable for most people. But without insurance, it's nearly impossible to control blood sugar properly.
People who don't have access to medical care to manage the illness die sooner than those who can see a physician regularly.
How much less expensive would it be to manage the disease? Billions. Right now, people show up in the emergency room in renal failure and then need dialysis, or with massive infections that end with an amputation.
As with all chronic illness, we pay now or we pay later. Too often, the cost is a life.
We're trying to organize a healthcare rally in Savannah, Ga., for Aug. 24. We have a whole lot of people interested in coming -- we just need to know where to tell them to gather.
We decided we're going to keep it positive -- we have no intention of blasting Memorial Health. They've blown me off at every turn. They don't want to talk, and I won't sue, so it's time to move on and try to do something to prevent more deaths from lack of insurance and lack of care. Going negative won't solve anything. It won't bring about change. It won't give Mike back to us and it won't get healthcare for other people who need it.
It's time to get vocal. We need to be out in public talking about healthcare as a right, not something avaialable only to the favored few.
People deserve preventive care, diagnostic tests, chronic disease management -- the less expensive alternatives to emergency room as primary care.
If Mike had access to colonoscopies, his cancer likely would have been caught early. It would have meant one operation, possibly one round of chemo. Much cheaper than two major operations, two rounds of chemo, radiation and a life over at 33.
It's time to speak out. We chose Savannah because that's where Mike lived when he got sick.
So, get your plaid on and be in Savannah on Aug. 24. We'll let you know where as soon as we nail down a place.
I had supper with my friend, Liz tonight. Monday night. Rob works late, so it's often girls' night out. Liz runs a nonprofit that takes care of people with developmental disabilities, and she loves those she calls "my people." She has a wonderful sense of humor and finds such joy in these people others don't want to see. Since I'm the same kind of bleeding heart, we get along.
Her last name is Huesemann, but after I ran into her at an event with a beer in her hand, I told her I was going to rename her Juiceman. It stuck, and as she dispenses pearls of wisdom, like "If they think my people are worthless, they're wrong. I love my people." and "I love it when my people sing, even when they don't know the words." Then there's "She should just shut her mouth." or, "Can I have your face jug? I really love it and it would look so good at my house."
She knows one of my pet peeves is to have people I'm interviewing say, "Put that in your story," or "Write about that." So, she'll say something outrageous, followed by, "Put that in your story," or "Write that down." It evolved into my proposing a new series of stories: "Juiceman says ..." The pearls of wisdom get sillier every time we get together.
She met Mike once, last Thanksgiving when she came for dinner, and he had her doubled over laughing. He offered to take the face jug and put it in her car. He was sick and in pain, but he was still funny and she just loved him immediately.
"I'll never eat Thanksgiving dinner again without thinking about him," Juiceman says. "He was a doll."
That he was. He touched everyone who met him.
The American Medical Association came out with a report card this week, assessing the claims processing performance of Medicare and seven national commercial health insurers: Aetna, Anthem Blue Cross Blue Shield, CIGNA, Coventry Health Care, Health Net, Humana and United Healthcare.
So, who most often pays the rate they've contracted to pay? Medicare. Our national single-payer insurance plan. If you think the government can't do anything as well as the private sector, think again.
The big insurance companies use an incredible array of tricks to reduce or deny payments to physicians, who then must hire entire departments of people to chase down the money due them. It adds billions of dollars to healthcare costs every year while returning nothing of value. It's pure greed and dishonesty on the part of the insurance companies, and they get away with it year after year, and tens of thousands of people die every year because they don't have access to care.
How many of those people could be cared for with those wasted billions of dollars?
If you want to look at the report card and the press release explaining it, visit:
As Mike's stepfather, I can't say why it's taken me so long to visit this site or post anything. I guess in my own way I'm working through feelings and memories, and even though I freely talk about it with Leslie, other family and friends, I find myself at a loss to adequately express how I feel about Mike's death. Maybe this will be a start: On Father's Day each year -- without fail -- Mike would take the time to call and wish me a happy Father's Day. Even though we talked only a few minutes, it always touched me that he would make that effort. I've never been really secure in my role as stepfather, and Lord knows I made more than my share of mistakes. But Mike always reached out to me, and it always made me feel special. My day will be emptier without that phone call. I know I never said this enough when you were alive, but I hope it still counts for something: I love you, Mike
As a daily newspaper reporter for more than 25 years, I've learned to be wary whenever I hear the word "reform." In today's America it usually means making things worse for average people like me.
Mental health "reform" here in North Carolina took a system that was working and shut it down. It wasn't perfect, but it did work for the most part. The public system was privatized and now fewer people have fewer options. Waiting times for treatment continue to grow and our state psychiatric hospitals are falling apart with too little staff and too many patients. The state continues to make policy decisions that don't make sense as the system sinks deeper into crisis.
So, whenever I hear someone talk about tort reform, I figure it's bad news for the little guy. Now I know my instincts are right. It's not about preventing outrageous awards by juries, although that's what they'll tell you. What it's really about is protecting practitioners, hospitals, insurance companies and pharmceutical companies from having to pay for their mistakes.
I don't want money for my son's death. What I want is for someone to admit it's wrong to not inform a patient of a life-threatening medical condition. I can't even get that. I can almost see the doctor shimmying around in gold lame pants like MC Hammer, singing "Can't touch this."
Danny talked me into talking to a lawyer about the horrible treatment Mike got at Memorial Health in Savannah, Ga. Apparently it isn't malpractice unless the patient dies then and there. Because Mike suffered terribly but survived their mistreatment for a couple of years, there's no lawsuit.
It may be immoral to not tell a patient about a life-threatening condition, but it isn't actionable. It may be immoral to take a wait-and-see attitude for weeks when a patient is starving and you know there's a colon blockage, but you can't sue over it. You can let an infection fester until it's weeping pus and smells of death, but it's not enough to sue over.
I don't want their money, but I can't believe what they did to Mike isn't worth more than a shoulder shrug and a smug "you can't touch us."
People without insurance are being told they have to pay up front for lifesaving treatments or they can't get them. People go to the emergency room and are sent home without the treatment they need. Insurance companies cancel policies for no good reason.
And they get away with it.
I have to admit I'm pretty angry right now. There are hundreds of thousands of people feeling all the frustration and grief I'm feeling, and we all seem to be powerless to motivate people in power (who have the best medical coverage anywhere) to do a damn thing about it.
This report from the Robert Wood Johnson Foundation documents, state-by-state, the rates of people without insurance, the percentage of people who could get care if they needed it. In several states, that number barely tops 80 percent. That means one-fifth of the population has no access whatsoever to health care except for the emergency room, where you have to live — or die — with whatever the doctors tell you.
In March, a homeless man in Asheville went to the emergency room here. He was having respiratory problems, so the staff gave him some medication and released him. The man protested, saying he was really sick, and refused to leave.
The hospital called the police because the man became unruly, and he was carted off to jail, where he died later that night.
I don’t blame the hospital nearly as much as I blame the system. If the man had access to medical care, he could have been treated before his cold developed into pneumonia. Maybe in a humane society he would have been cared for.
The Robert Wood Johnson Foundation has just announced a $300 million commitment to improve the healthcare of Americans. Read about the effort.
“Across America, there are serious gaps between the health care that people should receive and the care they actually receive,” said Risa Lavizzo-Mourey, M.D., M.B.A., president and CEO of the Robert Wood Johnson Foundation. “Despite having the most expensive health care system in the world, patients are subject to too many mistakes, too much miscommunication and too much inequity. As a result, too many Americans aren’t receiving the care they need and deserve.”