Celebrating Bobrobert

I'll be writing more about the wonderful memorial service and celebration when I return to Austin. But this was just too good not to share right away.



Hazel Vickery was BR's fifth grade social studies teacher. Back then, she taught BR how to dance the Charleston. At the memorial celebration, she entertained the crowd with a couple numbers at the piano. Guaranteed to bring a smile to your face.

Jordan's first motorcycle lesson

Saturday was Jordan's 20th birthday. When I asked her what she wanted to do to celebrate, she said she wanted to learn to ride the motorcycle. She was quite successful.

Illinois Postcards

Landing at Chicago's Midway Airport

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Visiting with Cindy. We've been friends since high school.

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Meeting my niece, Hope

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BR and Prialt - Day 1

Six hours after the catheter insertion, BR wasn't getting relief. The doctor wants to give it a full 24 hours before adjusting the dosage, but I feel pretty sure it's a bit too low.



Discharge is still scheduled for Tuesday AM.

Summer 2009 at Mueller, Austin

I took a little time this weekend to put together a little clip video of some of the things we did this past summer. It wasn't all urine and pain. :-)

Nature's Pain Relief

Not enough to relieve the drought, but it sure was nice.

I'm not dead yet

One last postcard

Postcards IV

Postcards II

Bless the Drag Queens and the Leathermen

For in this world we have no voice
We have no choice

My apologies to the Carpenters, and in no way am I comparing Drag Queens to beasts, or Leathermen to children. At least not the ones bigger than me.

It may surprise some, but gays are largely a silent minority. The vast majority of homosexuals live their lives without discussing who they sleep with at night. Unlike different races and nationalities, we can hide who we are to avoid discrimination.

Well, not all of us.

I have long admired both Drag Queens and Leathermen. Despite society's dictates, they are compelled to live their lives as they are. In the open. Harming no one. And they are often the foundation of best part of the gay community. The part that gives. The part that puts together fundraisers and runs non-profits. The part that vocalizes the needs of the silent. They take no prisoners, unless that's your thing.

So this gay pride week, I tip my gay hat to the Drag Queens and the Leathermen. Thank you for all you do.



I shot this video with my cell phone (duh), so I apologize to Donnarama for the crappy quality. There's plenty better Donnarama footage on YouTube.

Earth Wind & Fire

It was a mercifully cloudy day last Sunday, when BR, Steve, Jeanne, and Greg helped turn Jazz Fest into a Boogie Wonderland with Earth Wind and Fire.

Sights and Sounds of Bourbon Street

BR and I took a road trip to New Orleans this past weekend for the Jazz and Heritage Festival. We met up with our friends Jeanne and Greg from Oakland, as well as the Louisiana crew.

This was BR's first trip to New Orleans in a wheelchair. On the whole, things went well. We arrived at 4am on Friday looking a bit like the Beverly Hillbillies after being on the road for 10 hours. The room at the Iberville Suites had just enough space to accommodate the hospital bed and wheelchair.

The streets and sidewalks of the French Quarter have never been known as consistent. Potholes, missing sections of bricks, and general unevenness make navigating in a wheelchair quite the adventure. We shot a video while walking down Bourbon Street this past Saturday evening to give you a feel.

BP MS 150 rolls into Austin

This past Sunday, BR and I set up an unofficial community pit stop at the edge of the Mueller Southwest Greenway. Several neighbors, as well as Cathy and Todd from Dallas, joined us in cheering in the 11,000 riders, who raised over $12 million for the Lone Star Chapter of the National MS Society.

Spinal Cord Stimulation Experience (part four: DVD Extras)

Spinal Cord Stimulation Experience (part three: post-op)

Spinal Cord Stimulation Experience (part two: pre-op)

Spinal Cord Stimulation Experience (part one)

Mardi Gras time again

It's that time of year again. Mardi Gras time! It was 1992 when BR talked a group of us into a road trip from Dallas to the Mardi Gras in New Orleans. I instantly fell in love with the city. As Anne Rice said, New Orleans is a city of "preservation through neglect." So many beautiful old buildings that nobody bothered to tear down.

Every year when Mardi Gras comes around, I do everything I can to justify making the trip. "You deserve a vacation." "You'll get to see so many friends with just one trip." "It's a late Mardi Gras this year -- those are always the best!" "You'll be driving this year, so you'll save money on airfare." And the newest, "BR may not be able to go next year." But when push came to shove, the budget just couldn't absorb the cost.

I guess I'll just have to wax nostalgic.

Information Society

There is so much information out there. Some good. Some bad. So many people blogging about their lives. So many corporations and governments tracking our interactions. So many medical professionals trying to do what they can to help their patients. So many medical equipment and pharmaceutical corporations trying to sell their products. So many medical insurance corporations trying to keep the cost-to-benefit ratio in line.

Digital information never dies. Some is public, like every post I ever made on Usenet dating back to 1990. Some shouldn't be public but is, like my personal information that has been "lost" by two of my previous employers. And then there is information on the effectiveness of medical treatments.

When BR and I met with the representatives of the corporation that makes the spinal cord stimulator equipment, I had one simple question. "Based on the data you've collected over years of trials, what are the chances that someone with BR's condition will benefit from the device?" You would have thought I had asked for their first born.

The responses we got ranged from, "We don't collect that type of information," to "FDA regulations don't allow us to disclose that type of information," to "We have 'Patient Ambassadors' that you can e-mail," to "When I searched the internet, I found a study that showed up to an 80% effective rate on MS patients." All within a 45 minute guided tour/sales pitch.

It is so obvious that the SCS equipment company isn't going to talk. Why would that be? I'm guessing it's because of the insurance company. If they admit that there is less than a 50% chance of success, the insurance company may not pay for the trial at all.

But wait a minute. The insurance company has their own information. For years they have been paying for SCS trials and know which patients went on to get the full implant. So I put the same question to the insurance company -- it's been a week with no response. Why would that be? I'm guessing tort law. If the insurance company admits that there is greater than a 50% chance of success and they still denied the procedure, they may get sued.

Lost in all of this is the most important person in my life who is in a whole heap of pain. The SCS trial won't be easy for him, no matter how many times the sales critter says "it's just a little needle." Every time she said that in the meeting, he would glare at her, until he finally said, "Have you ever had that little needle shoved in your back? No? Then shut the fuck up!"

It's pretty obvious that SCS treatment won't be a slam dunk for BR, but still we are leaning towards the trial. The dosages of pain killers are only going up, and with each increase, I'm watching BR struggle more to communicate clearly. In the end, the insurance company's threshold for approval is going to be higher than ours. I just hope it isn't too high.

Here's what BR has to say.