I talked to Amy Mitchell today. Her 3-year-old son, Paxten, died of leukemia five days after Mike died. We talked about the flashbacks and the short-term memory loss.
"How are you dealing with that?"
"Dealing with what?"
We're moving through parallel grief. Good days and bad, anger and acceptance, laughter and tears.
Paxten is riding a purple dragon and Mike is hanging out with his aunt and grandfather, maybe playing guitar alongside Stevie Ray Vaughn.
Amy has a terrible fear of losing her 9-month-old daughter and I understand it completely. I worry about Danny a lot more than I used to.
It was good to talk to Amy to compare notes and share our grief. Paxten was a beautiful boy.
I did get some good news today: one of the TV stations in Savannah wants to do a story in advance of the rally next month. I can tell Mike's story and maybe get more people out to tell their stories. The more faces we put on this issue, the better. One face after another after another after another ... people who were loved and who died before they should have because of a broken health care system. One tragic story after another, one grieving family after another. There are 200,000 out there in the last eight years alone.
We can change things, one story at a time.
I was browsing through the blog of another mom who lost a child to cancer just five days after Mike died. One of the things she said was that she keeps going back to the moment he died. It comes at seemingly random moments, when all seems to be going well, and suddenly I'm back at that moment -- by far the worst moment of my life.
I knew in my head those last days of his life that there would be no miracle, but when the moment actually came, it brought such overwhelming heartache. It still does, and I guess it always will.
I'm told the moments will become less frequent as time goes on. It's been likened to walking on a beach and being knocked over by a wave. You get up and start walking again.
Last night I was making a fresh fruit crisp -- peaches, blueberries and blackberries. We've had a hell of a blueberry crop this year, and Mike loved, loved, loved blueberries. He used to threaten to come at the height of blueberry season and eat all of them right off the bushes. He said he wanted to stand there with a pint of heavy cream and swig it while his mouth was full of blueberries.
I can almost see him out there. He loved instant gratification when he could get it. He never had money, but he always found joy in simple things, even though he claimed to want a big house and a fast sports car. In reality he was happy with a good book, good food, a video game, friends, family and good conversation.
I would have loved to defend my blueberries against his assault. Instead I flash back to the moment he died whenever I look at those branches bent over with the weight of the best blueberry crop I've ever had.
I take my bread out of the oven and hear, "The only thing wrong with this bread is that it's not at my house!"
So many little everyday things remind me of him, and sometimes they make me laugh, but too often they bring me back to the moment he died.
Danny and Jennifer came up this weekend with Meghan and Trey (the two older girls were busy), and we went to Asheville's annual street festival, Bele Chere.
I was fine most of the time, but a few times during the weekend, I really, really missed Mike. Danny would say something, and I could almost hear Mike making his smart-aleck comment on top of Danny's.
We heard some great blues, which he would have loved, and some incredible bluegrass -- we were right up front for the Steep Canyon Rangers. They put on a big fundraiser every year to raise money for kids. I wish I could land them for Life o' Mike. I have to start thinking about raising money along with consciousness.
I talked to Bill Murdock, the executive director of Eblen, and he's happy to spend anything marked Life o' Mike or Mike Danforth on getting medical care for people. Eblen already does that, but we want to formally name the program the Life o' Mike Fund. We need people t give first, though.
So, if you're looking for something worthwhile to do with your money, give it to Eblen, marked for the Life o' Mike Fund. Details are on the main page.
More friends and family have said they want to come to the rally in Savanah. My niece Christina wants to come. I might have to pass her a few bucks to get her there, but she and Mike adored each other. She got him tickets to a Slayer concert. I still have the hat, worn and dirty from wear.
Shannon and Matt and the kids are coming, so I'll get to play with my sweet little Cassie and Liam. Shannon was Mike's favorite cousin from the time they were very little. It started when he was 4 and she was 3. We were hiking in the woods behind my sister's house and we came to a fork in the path. Shannon turned around and asked which one to take and Mike pointed to the one on the right.
"That's right," Ellen said. "That was really good."
Shannon looked at Mike with adoring eyes and said, "Oh Mike, you're so smart. You know eveeything."
Ellen decided she had to have a talk with her daughter, but it was too late. Mike adored her for the rest of his life, and she adored him. They both have the twisted Boyd sense of humor, and they both know their mothers are more than a little crazy.
We lost Ellen two years ago this week to lung cancer and Mike in April to colon cancer. Shannon and I lean on each other whenever we need support. She's an amazing young woman.
But then, so is Christina. She's bold and in-your-face, which Mike loved. But he also loved the sweet, vulnerable side of her that she rarely shows anyone. God forbid anyone know she's scared or hurt. She's such a Boyd woman.
I saw Bill Murdock of Eblen Charities today and we can collect money to be distributed to people in need under the Eblen umbrella. So, we're going to start the Life o' Mike Fund soon. It will be a part of Eblen Charities to start. It could stay there permanently because Eblen, a home-grown charity, is going places and doing big things, and Life o' Mike will be part of that.
We're starting to think we can make a difference. Now we just have to do it.
Things are starting to come together for our rally in Savanah on Aug. 24. I mailed off the permit application today for a gathering on the mall in Daffin Park.
I was still pretty angry when I came up with the idea of a rally, and I guess I still am angry that Mike died because he couldn't get access to health care. But Mike hated negativity, so we're going to keep this rally as positive as we can. We want health care for everyone. We're tired of living in the only industrialized nation in the world that denies health care to its people and we believe it's time to stand up and be heard.
In the last few days, I've gotten a number of calls from people who don't have access to health care. I hear story after story from friends and family, from strangers, from doctors, nurses and other practitioners. One woman can't get a diagnostic test she needs beause she can't afford it and Medicaid won't pay for it. f she could get the test, Medicaid would pay for the treatment for whatever s wrong and she likely would be able to go back to work and become a taxpayer instead of a tax burden.
The system is so self-defeating. We wait until people are really sick -- and really expensive to treat -- before we help them, if we do help them.
Our disability system is in even worse shape than out health care system. Attorneys tell me about clients who die while waiting, and even people who get disability aren't eligible for Medicare benefits for 24 months. So, they're to sick to work and they can't get coverage unless they're fortunate to have a spouse whose insurance covers them. Fat chance of that nowadays.
It's time for us to speak up and tell our stories. It's time for us to be seen and heard. People like Mike and the 200,000 others who have died since 2000 deserved better than they got. Maybe if enough of us speak up loudly enough, 200,000 more won't have to die in the next eight years.
So, get your plaid on and come out to Dafin Park in Savannah on Aug. 24. We'll celebrate the Life o' Mike and everyone else who should have health care.
I think it's easier when I'm around people who've been with me since Mike died. Everyone wants to know how I'm coping and what happened at the end and on and on.
I'm coping, but it's harder here. Maybe it's because I visited my sister's grave and then my father's grave yesterday. Mike doesn't have a grave. He's in my heart, but there's no one place I can go where there's a memorial to him. Once Eblen's new building is up and the break room is there, maybe that will be good.
My late sister's neighbors came over last night. I love Gary and Claudia. They were the best man and matron of honor at Ellen and KJ's wedding. They knew Mike had cancer, but they were horrified to learn that he died because he couldn't afford a colonoscopy when it might have saved his life.
Gary talked about someone he knew not being able to deal with a tooth abcess because he couldn't afford it. People die from that. Honest. The infection can spread to the brain and kill you.
Gary owns his own business and he thinks about whether he'll ever be able to retire and still have access to healthcare. MIke's death has made him think more about healthcare as a right for all Americans instead of just the ones who are lucky enough to have insurance and/or money.
That's where I want to start. I want to get people thinking about healthcare as a right, as it is in every other industrialized country in the world. I want people to question the system and then demand change. I'm tired of hearing how we ought to do something. People are dying; it' time for action.
It seems as though we're timing things as before Mike got sick, after Mike got sick, before Mike died and since Mike died. All our lives seem to be broken down into that right now. Peyton and I were talking about her friendship with a boy tonight and it was broken down into those terms without our really thinking about it.
They were mad at each other at this point, less mad at this point, back to being friends at this point -- and all the points related to whether Mike's pain was back, whether his recurrence was diagnosed yet, whether he was still in Cary with James or back here with us.
It's like we tell time based on whether Mike was alive or dead, and what state his illness was at. That's because time doesn't matter when someone is dying. It's all focused on the person, and time passes only as it related to Mike.
The pain came back in October, the fluid was noticed the middle of February. The diagnosis came back the end of February. He came home weeks later and died two weeks after that. Time has pretty much stood still since he died, There's before Mike died and since Mike died. Everyting else revolves around that.
It's pretty graphic, but it's right there, captured on video -- a 49-year-old woman who had been waiting in a psychiatric emergency room at Kings County Hospital in Manhattan for nearly 24 hours, fell out of her chair and landed face-down on the floor, where she was ignored for 45 minutes.
The video shows people coming into the room and leaving, and no one even checks to see if she's OK. By the time anyone does, she has died.
It sounds like something from a bad, dark science fiction novel about the world gone bad.
But then, so does the death of 200,000 people in eight years because they didn't have access to health care. Count her as one of them.
According to the New York Times, she was Esmin Elizabeth Green, a native of Jamiaca. She worked with children and the elderly and had six children, the youngest of whom was 14. My heart goes out to her family.
To see the video, go to http://video.google.com/videoplay?docid=-6743551142523684531&q=patient+dies&ei=mctqSK3GKJqarQL-yKznCw&hl=en
To read the New York Times account of the incident, go to http://www.nytimes.com/2008/07/02/nyregion/02hosp.html