Two years ago tonight, I spent my last evening with Mike. The 16 people who had come for the weekend to say goodbye had left and Janet and James had gone back to Raleigh for a couple of days.
Mike and I watched some "Star Trek" and nibbled on dark chocolate.
"You know, Mom, I'm having a good time," he said.
I was a little stunned by that. He weighed about 90 pounds and he was in pain most of the time. He was too weak to get out of bed, although he was still alert and aware. His world had shrunk to a small bedroom with a TV, a game console and a hospital bed.
"I have everything I need," he said.
He had "boo bankie," the remains of a blanket I crocheted for him when he was a little boy, "Idiot Bear," a cross-eyed bear that my mother sent to comfort him, his cigarettes, and me to bring him whatever else he might desire.
He found joy in his final day.
These days are difficult for me. I miss that joy. I try to find it myself, and I usually succeed. If he could be content that evening two years ago, I have nothing to complain about except that I miss him so terribly.
So, tomorrow afternoon, I'll put on my plaid flannel pajama bottoms and his leather jacket and we'll go to Black Balsam, where his ashes are scattered. We'll tell a couple of stories about him, toast his with Cadbury Creme Eggs and leave one for him nestled in the roots of a flame azalea bush.
It all may sound a little silly, but that was Mike. How appropriate that we celebrate his life on April Fool's Day.
Just a day after saying they could deny coverage to sick children by refusing to sell policies to their families, the insurance companies have said they will follow the intent of the law.
It reminds me of me telling my older sister, "You're not the boss!" when she was left in charge. I found out when my parents got home from grocery shopping that although she wasn't the mom, my mother's powers of bossiness had been transferred temporarily to Ellen. There would be consequences if I didn't behave.
The insurance companies found a "loophole" in the law and if it hadn't generated total outrage, they would have gone with the more profitable option.
But HHS Secretary Kathleen Sebelius called them out.
Health insurance reform is designed to prevent any child from being denied coverage because he or she has a pre-existing condition," she wrote to the industry’s top lobbyist, Karen Ignagni. "Now is not the time to search for nonexistent loopholes that preserve a broken system."
Big Insurance is trying to soften the laws effect on its profits and pissing everybody off isn't the way to get anything. So, they'll go behind the scenes and lobby the people who will further define the regulations and enforce them.
Believe me, they're not done; they were testing the waters yesterday to see how much they can take. Next time their efforts might not be so public.
Insurance companies claim a basic part the new health reform law doesn't apply to them until 2014.
They say they don't have to cover children at all until then -- their way around having to cover children with birth defects, asthma, diabetes and other pre-existing conditions.
They say they don't have to sell insurance to families with sick kids.
According to the NY Times (http://www.nytimes.com/2010/03/29/health/policy/29health.html?hp):
Insurers agree that if they provide insurance for a child, they must cover pre-existing conditions. But, they say, the law does not require them to write insurance for the child and it does not guarantee the “availability of coverage” for all until 2014.
"William G. Schiffbauer, a lawyer whose clients include employers and insurance companies, said: “The fine print differs from the larger political message. If a company sells insurance, it will have to cover pre-existing conditions for children covered by the policy. But it does not have to sell to somebody with a pre-existing condition. And the insurer could increase premiums to cover the additional cost.”
Sen. John D. Rockefeller IV, Democrat of West Virginia and chairman of the Senate commerce committee, called the insurance company claims outrageous.
I'm not at all surprised, but like Sen. Rockefeller, I am outraged.
I don't know, maybe it's the letdown after the big push, but I'm just exhausted.
It has been an eventful few months -- four trips to Washington, the deaths of my mother and stepfather and one of my cats, my husband's near death, and finally, the passage of the health care bill.
I won't say the bill is transformative because it isn't, but it is a foundation on which we can build an equitable health care system.
I think seeing all the vitriol and hatred has worn me out too. I'm watching as Americans are whipped up into a frenzy that is sure to cause more deaths before it's all over, and I feel helpless because I can't talk sense into people and I can't stop the fear-mongering and lies.
All of this and I can't help but relive the weeks and days leading up to Mike's death. I see the woman at the door complaining that there were too many cars outside and I hear myself telling her in a sweet voice, "Oh, well they'll be gone soon. They've some to say goodbye to my son, and he'll be dead in the next few days."
She was horrified and asked if there was anything she could do, so I politely asked her to drive carefully.
It was mean, I know. But I wanted to spread the pain around, hoping I wouldn't feel it so acutely. It didn't help.
I hear Mike's frustration when the batteries ran out in the walkie-talkie and no one realized until one of us heard him calling. He had been calling for 20 minutes and the guilt still makes me cry.
I see the smile on his face when one of my friends promised him she would try a 12-step program to help her stop drinking.
I remember us putting stickers all over his walker as he said, "Yeah, pimp my walker."
I remember him ordering an electronic game and hitting "next-day delivery" because he wanted to be sure he got to enjoy it before he died.
I remember the hospice social worker telling me what a rare person he was. I knew that already.
I remember his ability to make people feel at ease when they were uncomfortable with his appearance.
I remember telling him I would work for access to quality health care for everyone in his memory, and he gave me his blessing.
This health care bill is not the end; it is just the foundation for real reform. Fight me if you wish. Call me a socialist-communist- leftist- pinko-hippie. But this is America and I want us to do the right thing.
After a little rest, we'll start working again to make the system better.
And I have the power of Mike behind me.
Rob and I watched the final vote in the House of Representatives tonight and of course it passed easily.
So we won the battle to create a foundation for equitable health care in America.
I know a lot of people are angry about it, but I think we'll see its popularity rise as insurance companies are forced to cover illnesses instead of dropping coverage when people get sick and when parents are able to get coverage for children who have birth defects (a pre-existing condition!).
I want more restrictions on the insurance and drug companies, but this is a good start. I'd love to be able to buy into Medicare. Let me pay what it costs and I'll take that coverage because it's better than most insurance companies' coverage.
It's been an emotional time for me because it comes in the middle of the anniversary of Mike's dying. Two years ago I was promising Mike I would work for reform in his memory.
I believe if this law was passed 10 years ago, Mike would be alive. So, to see it pass now is bittersweet. At least we have stemmed the tide of deaths.
That's a good start.
So when I tuned in to see President Obama sign the health care bill into law, there was 11-year-old Marcelas Owens, dressed up with a tie that matched the president's.
I used to fantasisize that I would be there on this day, holding a photo of Mike, but I couldn't be happier about who was there.
Marcelas lost his mother, Tifanny Owens, because she couldn't get health care. He was in Washington with us two weeks ago, and the media met him and loved him.
So did all of us "survivors" who came to Washington to protest against the insurance companies and to meet with our legislators.
Marcelas said his mom was a health care activist, and now that she is gone, he has to carry on her work in her memory.
This wasn't rehearsed. It came from his heart. I know because I heard him speak in private. His eyes welled with tears as he talked about how much he misses his mother and how he wanted to see health care reform passed so other kids don't lose their moms.
His grandmother and I share the grief of losing a child, but Marcelas was the one who spoke out, and he was eloquent.
He is one brave little boy and I love that he was there when history was made this morning.
As Joe Biden said, it was a big f*****g deal.
If you want to know how your representative voted last night, The Washington Post has a database of votes at http://projects.washingtonpost.com/congress/
For those of you in the NC 11th District, our representative, Heath Shuler, voted against the health reform bill. As a constituent, I had to express my feelings. Here's my e-mail to him:
I'm extremely disappointed to learn you voted with the insurance companies and against health care reform for me and my family.
The health reform bill that passed will make health care more affordable, do away with many of the insurance company abuses, and help small business and our economy.
It's not perfect, but is a good start, and it is a step toward a system that would provide quality, affordable health care to all.
Instead of standing up for the people you represent, you sided with the insurance companies and voted for the status quo - denial of care, skyrocketing prices, and medical bankruptcy.
You voted to allow 45,000 people to die every year from lack of care -- one every 12 minutes.
You call yourself pro-life, but you are merely anti-abortion. It appears you don't care about people once they are born.
As a Christian, perhaps you should have thought more about what Jesus would have wanted for these people who are dying because they can't get care.
I'll remember this vote when it comes time for me to cast mine in the May primary.
Shame on you.
I would ask that all of us send a note of appreciation or disappointment to our representatives in Washington. They need to know how we feel.
Two years ago, I promised Mike his death wouldn't be for nothing. I told him I would take my grief and use that energy to work toward health care for all Americans. I promised him I would work toward that, whatever it cost.
It cost me my job, but not my soul.
Tonight we made an important step in the right direction. Rep. Stupak stood up for his pro-life values and voted to help the already-born. I disagree with his strident anti-abortion stand and his threats to vote against this bill. But he did come to the table and we have a bill.
We have a ways to go before we have real reform, but this is a big step. We stood up to the hatemongers and did what was right.
Thank you to all who voted for life.
And to those who voted against it, I do hope you will come to regret your vote.
And to Mike: I love you, I miss you and I will continue to work in your memory for access to quality health care for all Americans.
Yesterday, demonstrators walked through the halls of our Capitol and hurled slurs at Rep. John Lewis (they used the N word) and Rep. Barney Frank (calling him a f****t and spitting at him).
Whatever happened to civilized discourse?
Republican leaders dismiss the incivility as a response to totalitarian tactics by the Democrats.
First of all, the Democrats aren't using any tactics the Republicans haven't used again and again to gain their tax cuts for the wealthy and deregulation for big corporations.
But even more important is the fact that they didn't even seem the least bit ashamed of these boors. No apologies, just condoning of their horrible behavior.
How low can we go?
Rep. Heath Shuler announced this afternoon he will vote no on reforming our broken health care system.
WLOS TV news came by to ask for my reaction and I gave it: I'm disappointed. I thought he really might be pro-life. But it turns out, he's only anti-abortion. It doesn't matter what happens to people after they're born.
If he has a primary opponent, I will vote for that person. I will not lift a finger to get him re-elected, and if his Republican opponent is worth voting for in the general election, I will vote for that person.
Heath Shuler no longer has my support. He has shown me who he is, and it's not someone I can ever support again.