Simpler days

BR's brother just sent him a tweet...

johnmckellar: @dedesbigboy Amen!!!!! I sometimes long for those simpler days where people were born, lived, and died in same small town.

It got me to wondering ... has globalization done a disservice to the disabled? By encouraging families to become so scattered during good times, does the global economy leave people out on a limb in bad times?

When BR was diagnosed with MS, we were living in San Francisco. That's roughly 2000 miles from his family near Shreveport, Louisiana ...



... and my family near Chicago, Illinois ...



The best families act as life's safety nets. Better than any government health care plan. Better than Meals-on-Wheels and Goodwill and Red Cross Shelters. By encouraging family members to seek their fortune in far off lands, it would appear that we are sacrificing our family safety nets on the gamble that nothing bad will happen while we are away.

But something bad always happens, doesn't it? After all, nobody gets out of this world alive. Be it our parents, our siblings, our partners, or our children, or even the community of friends we've built around us, we are all called upon to give and receive "family" assistance sooner or later.

It's the people who don't have any family that I worry about the most. They are the ones who necessarily end up in the government safety net. They are isolated. Too proud or too sick to ask for meaningful, lasting community assistance. I pray that whatever health care reform comes out of this congress, its primary focus is on the safety and comfort of those who need it most.

As for the rest of us, I pray that we continue to reach out to one another as a community. Give of our resources and talents to support our families. And make a continuing effort to grow those families.

The Politics of Garbage

This UPI headline says it all: Toronto stinks on Day 4 of trash strike.

The key issues are pay raises equal to what was given emergency workers last year, and the city's desire to drop bankable sick days and replace them with short-term disability insurance.

I'm all for the right to strike when workers are being treated unfairly. I'm just having a hard time empathizing with a pay raise demand given the miserable fiscal condition of most cities during this recession. Where exactly is this money supposed to come from? When it isn't flowing in, it can't flow out. When the city goes bankrupt, nobody gets paid.

You say it isn't fair that the emergency workers got their raise last year? Times change. Budget forecasts get refined. Consider the emergency workers lucky to have negotiated their contract under sunnier economic outlooks.

I wish it weren't the case, but the timing of contract negotiations always adds a bit of chance to what should be a completely uniform process. Better luck next time, CUPE.

Pain Pain Pain Pain Pain Pain Baked Beans Pain Pain Pain and Pain

BR's pain levels were off the chart today. He says he feels like his muscles are trying to pull away from the bone. It's been a day full of tears for him. Hugs provide emotional support, but make the pain worse.

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I've been reading the Musings of a Cranky Caregiver blog for a while now, and I think Cranky and I were separated at birth. Come to think of it, I've never seen us in the same place at the same time before. Hmmm...

Anyway, she discusses the things about caregiving that make her cranky, and how she tries to de-crank those situations. Exhaustion is a big one for me. BR and I have always been night owls. In a way, the MS encourages this, as he will sleep until 11am no matter when he goes to bed. The hard part comes in deciding when to call it quits for the evening. If we're still up when I hit the wall, I can't just crawl into to bed -- I have about an hour's worth of work still ahead of me.

The first step in the night routine is getting him into bed. Then the jealousy sets in -- he's done, and I still have to work. So it's time to go back to a set bedtime: 10pm. We can still stay up and watch TV together in the bedroom.

But that wasn't an issue today. I got him into bed at 6:30pm, and with his permission, medicated him until he was able to sleep. Still, he was moaning and twitching with pain.

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I was reading in the local paper that our state Senator Watson had authored and pushed through a bill to ban additional billboards along a stretch of scenic Texas highway. This is the same senator who told me he would keep BR's situation in mind if any legislation was brought to the senate floor to legalize medicinal marijuana. So his pen moves to keep his drive pretty, but not to relieve the pain of his constituents. It makes me sick to my stomach just thinking about his bass-ackward priorities.

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We've started discussing end of life options. BR doesn't want to live with this much pain. Prayer. Lots of quiet prayer and looking for signs.

Tax day aftermath

Can someone call Chris and Mariska? I've just been molested by my Uncle Sam's weird friend. I can't bring myself to say his name, so I'll just use his initials -- AMT.

Last year, he touched me inappropriately, leaving me confused with a sick feeling in my stomach. But this year it was a full on assault.

Seems that in financing our relocation from California to Texas through the exercising of stock options, I caught AMT's attention. I tried to reason with him. "I used the money to buy and remodel a home closer to my disabled partner's family," I pleaded. "I'm paying for his caregiver, which creates a job and lets me keep my own." No reaction. "I'm paying for his medical insurance and bills, including hundreds per month in medications alone. We bought a wheelchair conversion van to stay active and productive members of society."

"You're just a couple of fags," he muttered as he tore down my pants and grabbed my checkbook.

"But I need that money to pay for BR's care!"

"Shut up and bend over."

Tilting at Windmills

What do you do when the medical community doesn't know how to alleviate your pain? What do you do when the insurance company defers coverage for your prescribed medications for over a week? What do you do when you know there is a weed that will take away your pain, and yet make you a criminal?

I think we all know where this blog is heading. Out of the hospital bed, and into the streets!

His laughter is my drug of choice.

I'll admit it. I'm addicted to his full-body laugh. Not that patronizing one I get when I say something incredibly witty that he didn't really hear but he saw the expectant look on my face and threw me a bone. No, I'm talking about the laugh that only comes when I get it, and he gets it, and we know how stupid it is, so we do it again. And we still get it. And we laugh until we can't breathe and tears are running down our faces.

These days, that kind of laughter has been in short supply. Since the failed intrathecal pump trial, his pain is a guest that insists on hearing every word I say, then analyzes what a poor joke I'm making. In the end, my jokes have the opposite of the desired effect.

And all this while he is taking enough opioids to kill most men. Jack Osbourne would be paying me to tell jokes half as funny.

So like most good addicts whose supply has dried up, I've found alternatives. I'm blogging more and hanging on every comment. I'm being hypercritical of the American Idol contestants. Hell, I'm being hypercritical of everything, including myself.

And then tonight I got a fix. I put BR to bed and set him up on his side to ward off bedsores. He wanted some water before I changed the pain patches, so I grabbed the mug and made some stupid comment. And he started laughing. And he didn't stop. And I laughed. And we laughed. And we stopped. And we laughed again just as hard. Oh God, it's better than sex!

When we lived in California, the laughter came a lot easier. So much has changed since then, not the least of which is the loss of medicinal marijuana. You can take your Marinol and shove it, Texas. It is not a replacement for good, old fashioned, American grown, God created, pain relieving, appetite increasing, mood elevating pot! By criminalizing such an effective drug with centuries of recorded safe usage, you are condemning BR to be a guinea pig for the pharmaceutical and implant industry.

I invite every politician that has ever opposed the medicinal use of marijuana to come and care for BR for a month. In fact, I insist!

Gay Clergy don't merit air time, huh HBO?

Reverend Robinson delivered his prayer this afternoon, but you wouldn't know it from the HBO broadcast. For unknown reasons, the prayer ended up on the cutting room floor, and the televised portion of the event opened with a speech from Denzel Washington.

I'm sure conspiracy theories will be flying around the blog-o-sphere. Still, HBO owes the viewers an explanation.

Here's what Reverend Robinson said:

Welcome to Washington! The fun is about to begin, but first, please join me in pausing for a moment, to ask God’s blessing upon our nation and our next president.

O God of our many understandings, we pray that you will…

Bless us with tears – for a world in which over a billion people exist on less than a dollar a day, where young women from many lands are beaten and raped for wanting an education, and thousands die daily from malnutrition, malaria, and AIDS.

Bless us with anger – at discrimination, at home and abroad, against refugees and immigrants, women, people of color, gay, lesbian, bisexual and transgender people.

Bless us with discomfort – at the easy, simplistic “answers” we’ve preferred to hear from our politicians, instead of the truth, about ourselves and the world, which we need to face if we are going to rise to the challenges of the future.

Bless us with patience – and the knowledge that none of what ails us will be “fixed” anytime soon, and the understanding that our new president is a human being, not a messiah.

Bless us with humility – open to understanding that our own needs must always be balanced with those of the world.

Bless us with freedom from mere tolerance – replacing it with a genuine respect and warm embrace of our differences, and an understanding that in our diversity, we are stronger.

Bless us with compassion and generosity – remembering that every religion’s God judges us by the way we care for the most vulnerable in the human community, whether across town or across the world.

And God, we give you thanks for your child Barack, as he assumes the office of President of the United States.

Give him wisdom beyond his years, and inspire him with Lincoln’s reconciling leadership style, President Kennedy’s ability to enlist our best efforts, and Dr. King’s dream of a nation for ALL the people.

Give him a quiet heart, for our Ship of State needs a steady, calm captain in these times.

Give him stirring words, for we will need to be inspired and motivated to make the personal and common sacrifices necessary to facing the challenges ahead.

Make him color-blind, reminding him of his own words that under his leadership, there will be neither red nor blue states, but the United States.

Help him remember his own oppression as a minority, drawing on that experience of discrimination, that he might seek to change the lives of those who are still its victims.

Give him the strength to find family time and privacy, and help him remember that even though he is president, a father only gets one shot at his daughters’ childhoods.

And please, God, keep him safe. We know we ask too much of our presidents, and we’re asking FAR too much of this one. We know the risk he and his wife are taking for all of us, and we implore you, O good and great God, to keep him safe. Hold him in the palm of your hand – that he might do the work we have called him to do, that he might find joy in this impossible calling, and that in the end, he might lead us as a nation to a place of integrity, prosperity and peace.

AMEN.

How many invocations does a new president need?

Yesterday, the Presidential Inauguration Committee announced Initial Talent Line-up Confirmed for Lincoln Memorial Event:

Musical performers scheduled for the event include Beyonce, Mary J. Blige, Bono, Garth Brooks, Sheryl Crow, Renee Fleming, Josh Groban, Herbie Hancock, Heather Headley, John Legend, Jennifer Nettles, John Mellencamp, Usher Raymond IV, Shakira, Bruce Springsteen, James Taylor, will.i.am, and Stevie Wonder. Among those reading historical passages will be Jamie Foxx, Martin Luther King III, Queen Latifah and Denzel Washington. The Rt. Reverend V. Gene Robinson will give the invocation. Rob Mathes will be the music director and arranger for the backing band, which will support all of the artists. Additional performers will be announced as they are confirmed.

While I was reading this paragraph, I started humming that song from Sesame Street.

One of these things is not like the others.
One of these doesn't belong.
Can you tell which thing is not like the others
now before I finish my song?

Despite the obvious misclassification of the opening invocation prayer as entertainment, I couldn't be happier that Reverend Robinson will be there to deliver it. As the first gay man to be elected bishop in the Episcopal Church, Reverend Robinson is viewed by many as a divisive force, even causing some congregations to splinter away from the church. Unfortunate as that is, I'm reminded of one of my early software development mentors who taught me that "you have to crack a few eggs to make an omelet." Reverend Robinson puts it this way in his book, In the Eye of the Storm: Swept to the Center by God:

Everything we do in our congregations, our workplaces, and our families -- all of it has a ripple effect. And the actions we take in the Episcopal Church have ramifications around the world for our brothers and sisters in Christ. Sometimes, we are told, those ramifications are negative and divisive. But sometimes, especially to the ears of the discounted, despised and marginalized, those ramifications are breathtakingly holy, bringing life and hope to those whom Christ came to serve."

I'm a Christian who doesn't believe that homosexuality is an enormous sin, an abomination, or anything other than God challenging me to find purpose in a world that would rather I didn't exist. The church in which I was raised stressed the importance of family, of the sacraments, and of love. When I came out, I was told that my love wasn't the right kind of love, I would never receive the sacrament of marriage, and any family I built would be inferior. I hadn't received communion at a Christian church since.

Many members of BR's family attend the Gilliam Methodist Church in Gilliam, Louisiana. When BR was diagnosed with MS in 2007, the church did what churches do best -- they came together to support the family. But not only that, they reached out to San Francisco to support BR and me. The regular cards, letters, and e-mails of encouragement from the pastor, choir, and individual church members really helped us as we adjusted to all the change. So when BR and I attended Christmas Eve services with the family in Gilliam, I felt perfectly at ease receiving communion.

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WE ARE ONE: THE OBAMA INAUGURAL CELEBRATION AT THE LINCOLN MEMORIAL, the Opening Celebration for the 56th Presidential Inaugural, will be presented exclusively by HBO on Sunday, January 18 (7:00-9:00 p.m. ET/PT). HBO will televise the event on an open signal, working with all of its distributors to allow Americans across the country with access to cable, telcos or satellite television to join in the Opening Celebration for free.

Saddleback Church tries to electronically disguise their message

Back in a previous post, I expressed my anger at Mr. Obama choosing Rick Warren to deliver his presidential invocation. In that message, I provided a link to the Pastor Warren's Saddleback Church website, which made it clear that homosexuals could not be members of his church.

What do you find if you click on that link today? Not a single word about gay, homosexual, or sexual sin. Could it be that Mr. Obama was able to open Pastor Warren's eyes to the possibility that discrimination based on type of sin is not acceptable in the Christian faith? Has Pastor Warren's and his followers' hearts grown three sizes over the Christmas holiday?

Not in the least.

Though they took down the text, you can still find the same message in an audio recording stashed away on the "Bible Questions and Answers" page. The content of audio recordings is not indexed by search engines like google.com, yahoo.com, and live.com. So the change in the page appears to be just an effort to "lay low." Anyone want to bet the page goes back to the original text after the inauguration?

You're a mean one, Mr. Grinch.
You really are a heel.
You're as cuddly as a cactus,
You're as charming as an eel.
Mr. Grinch.

What are you thinking, Mr. President-Elect?

I find myself getting increasingly angry this holiday season. I'm angry that after a year of seeking medical assistance, BR is still in constant pain. I'm angry that Johnson & Johnson has chosen to kill the iBOT. I'm angry that a majority of Californians have chosen to put a "but not for them" amendment into the state constitution.

And now I'm angry that Mr. Obama has selected Rick Warren to deliver the invocation at his inauguration.

For those not familiar with invocations, here's an example delivered by the Reverend Billy Graham at the inauguration of George H. W. Bush.

This invocation starts by recognizing that we are "one nation under God." It also references the president's duty "to preserve, protect and defend the Constitution".

I can't imagine Rick Warren delivering these words with any credibility.

From the Saddleback Church website:

Because membership in a church is an outgrowth of accepting the Lordship and leadership of Jesus in one's life, someone unwilling to repent of their homosexual lifestyle would not be accepted at [sic] a member at Saddleback Church. That does not mean they cannot attend church - we hope they do! God's Word has the power to change our lives.

Does that sound like "one nation under God?" Even if you believe that homosexuality is "an enormous sin", Jesus himself said "Let he who is without sin cast the first stone" as an admission that we are all sinners. To refuse church membership based on this one particular sin seems arbitrary at best, and downright hateful at worst. There are lots of sins listed in the Bible. Pride is one of the seven deadly sins. Yet Reverend Warren's bio page seems to list only things one might be proud of, and nothing that might make him appear to be a sinner. Pretty ironic -- by not disclosing his sins and painting an accurate picture of himself, he has unashamedly committed a sin. Must he now repent his prideful lifestyle, or risk being thrown out of his own church?

And how am I supposed to take him seriously when he talks about the president's obligation to preserve, protect, and defend the Constitution, when Reverend Warren worked tirelessly to remove a right from the California Constitution? Enough said.