D Tour
Last night, PBS/Independent Lens presented D Tour, a documentary about Pat Spurgeon from Rogue Wave. He was born with only one kidney, and was lucky enough to get a kidney transplant only to have it fail as well. The doc focuses on his struggles to live the life of a touring drummer, all while administering dialysis to himself twice a day while on the road, not to mention his search for a new kidney donor.
I learned about this doc through Adam from Beggar’s Banquet, as he’s friends with Pat and helped produce the documentary. Tying this into my previous post about social media, this was all revealed on the Elbows Forum, showing that social media can be a force for good, and not just self-promotion! That there’s my optimism showin’ again!
This particular subject matter hits close to home. It’s hard for me to explain why, because I have a hard time being personal on this blog, which sounds completely asinine as the primary thrust of a blog is sharing yourself with other people. Hey, I’m a study in contrasts, okay? I’m a fairly open person, but I’d say I’m superficially open. Very few people know me intimately, and I don’t really like to discuss the ins and outs of my life with anyone outside a very small circle of friends. Even they don’t necessarily get everything unfiltered, so going beyond something like ‘I watched Land of the Lost today and it was really stupid, the end’ to people I’ve never met is a daunting – possibly terrifying – task.
With that in mind, I’m going to do my best here. My great aunt died of kidney failure almost exactly 1 year ago last month. It was a very long, uncomfortable illness. My grandmother also had renal failure, and I frequently took them back and forth to doctor’s appointments, surgeries, dialysis and the like. My grandmother died in 2003, but my great aunt lived on until 2008. She was on dialysis for 9 years, which as the documentary points out, is a fairly long time for someone to survive on dialysis. Some people go for 20, 30 years, but it’s not the norm. Even if you do last that long, dialysis patients are especially susceptible to pneumonia, diabetes and other secondary illnesses. Your diet is incredibly limited, and you can only take in a very small amount of fluid per day. It’s not an easy or especially enjoyable lifestyle, to be frank.
I took care of my aunt a great deal in her final years, as she’d begun to suffer from macular degeneration (it’s not blindness exactly, it has to do with your ability to properly recognize shapes and faces) and couldn’t drive or really perform a lot of basic tasks for herself anymore. She was also in a weakened physical state from the dialysis, which is a pretty common side effect – especially from hemodialysis. Another side effect is a loss of appetite, and that one was especially bad because as I’m sure anyone with a grandmother or elderly relatives can attest to, going out to eat is one of the only social events left that seniors can enjoy. It’s like going to the movies or a show. So if they lose their appetite, they can quickly become depressed. She definitely went through that, but thankfully she had an upswing in the last month before she died, and regained a lot of her appetite. I’ve been told by several doctors that the sudden energy surge isn’t uncommon, and that it’s more or less the body releasing every endorphin in a last ditch effort to combat the disease.
Watching the documentary was a very personal experience, since it brought back the memories of her final years in a very visceral way. The doctors were convinced she could go at any time, and when you live on the edge like that for 4 years it can fray your nerves, to say the least. So to bring it all back was…odd. Uncomfortable. But it also meant I was identifying with what Pat was going through, as well as what his family and friends were going through. That he’s only 40 made it hit even harder. It’s a very, very scary disease, and it’s always in the back of my mind as there’s every indication it’s hereditary. My great grandmother on the same side of the family had kidney disease, though thankfully neither my mother nor father have any signs of it.
With that context established, let’s get back to the documentary’s subject…the first question that likely comes to mind to most sensible folks (and is in fact asked by his bandmates, family and friends within the doc) is: What is he thinking? Why would you go on the road with kidney failure? Usually a dialysis session (even peritoneal dialysis, which is what Pat was lucky enough to be on) lasts at least a few hours, and he needed 2 per day. Beyond the basic time constraints, you also need a relatively sterile environment – something band vans, cheap motels, groupies and dirty green rooms aren’t really known for. I mentioned the dietary restrictions before, and liquor is right out, so in some ways it’s like an alcoholic buying a brewery.
As the story progresses, however, you begin to realize that were it not for the music, Spurgeon might not have had much reason to go on. He suffers numerous setbacks prior to and during the year or so that the film crew follows him, including losing the first transplanted kidney and a few false starts finding a 2nd compatible donor. In the words of one of his friends, ‘he went to a dark place’ for a while. But the band serves as a support system, and keeps his focus on something positive. I’m not going to argue about ‘the power of positive thinking’ or imply that mind-over-matter is a valid medical philosophy, but I think it’s reasonable to say that sitting in a chair for hours, not doing what you love and dwelling on your infirmity is not the best way to improve your mental health. Regardless of whether Pat’s decision to go on the road was particularly wise, I think it’s something most of us can understand and relate to.
Another important point the doc drives home – particularly in its second half – is the key role organ donation plays in the lives of victims of not just kidney but any organ failure. It’s such a simple thing, but so many of us don’t do it. I’ll fully admit that I haven’t been an organ donor myself. Not because I secretly harbor ill will toward the sick, but as one woman interviewed in the documentary pointed out ‘It just feels weird’. It’s a stupid mental block. If I die, my organs certainly aren’t doing me any good, are they? What better way to turn tragedy into joy than to become an organ donor? I’m determined to rectify the situation and update my license. It’s such a small thing for me to do, but obviously it could mean the difference between life or death to someone else.
You could never argue that the main message of this film has anything to do with filesharing and the current state of the music industry, but it was hard not to see some of the ugly facts related to those debates peek through here and there. Pat is a 41-year-old drummer in a reasonably successful indie band, yet he can’t even afford health insurance (you could argue that’s due to his pre-existing condition, but I’d be surprised if any of his bandmates had health insurance, either). He’s on Medicaid. He’s obviously not living high on the hog, and he and the band are spending a lot of time on the road touring. I couldn’t help but think of the ‘free-free-free’ argument that basically says it’s okay to download because bands will make up the money on tour. Rogue Wave have had their music featured in numerous television shows, they’ve played Letterman, they’ve played major festivals and have shared stages with Death Cab For Cutie (Ben Gibbard makes a brief appearance in the doc), yet these guys are barely eking by. Maybe we can’t hurt Radiohead or Nine Inch Nails by downloading their music, but is it possible we’re hurting the small-to-medium guys like Rogue Wave? I wonder.
You can watch the preview and some video interviews on the PBS website, and I’m sure the documentary will eventually be available to view online. For now, it looks like it’s replaying here locally on Sunday, so I’m sure it’s due to repeat wherever you are, too. Keep an eye out, it’s well worth your while. It’s obviously made me think, and that doesn’t happen all that often.
Tags: independent lens, pbs, rogue wave
