Bob Flanagan should be dead

If you've never heard of him, Bob Flanagan is a performance artist, writer and self-proclaimed supermasochist. Well, he was. He was also one of the longest lived cystic fibrosis patients on record in his time, living well into his forties with a disease that had historically taken the lives of nearly all sufferers as children.

But his was an unpleasant life, to say the least.

I first heard of Bob Flanagan back in the mid-1990s, a period I now think of as "before" in my own patient brain. I watched the documentary titled "Sick" with shock and awe (warning: this film is unsuitable for most humans). I won't go into detail here except to say that my interest then was more from a filmmaking perspective.

Today, having recently passed the 10-year mark of my own medical odyssey, I watched it again. Admittedly, I blew through a few of the most graphic images, but my mindset was much more philosophical.

In essence, Flanagan's goal was to battle the pain of his illness by becoming a supermasochist. His reason for inflicting unspeakable pain upon himself was simple: He wanted to be able to control his body for a change.

As a prognosis he was promised an early death. He lived with that knowledge for decades. And during that time he committed such acts of violence against himself --- although it was surely comparable to anything the doctors did --- that he has become a quiet legend, especially among cystic fibrosis patients.

One 17-year-old girl featured in the filmed documentary met Mr. Flanagan as part of the Make a Wish Foundation's activities. Accompanied by her mother, she confessed to him that his book was her bible. Trust me, it resembles the actual Bible in no way shape or form. She thanked him for laying himself so bare for those who come behind him. Mom was clearly out of her element here given the living environment Flanagan and his partner, and dominatrix, had created for themselves. But parents with dying children tend to fall more on the liberal side when it comes to doling out rules.

But it made me ask myself: are we stronger as patients if we bond together? Or are we better off to go about our lives trying not think about it? I know the latter isn't totally realistic, especially with illnesses of such a chronic and deadly nature.

I have a close friend, we'll call him "BTK," who explained to me that he'd become a practiced needle, scalpel and rigger-type dungeon dweller (literally) who focused much of his time "playing with" a young woman with multiple sclerosis. He worked to help ease her pain by inflicting it upon her with disciplined application and sterilization.

As I tried to wrap my head around this concept, it occurred to me over and over while I revisited the documentary. I understand the desperation and the desire to control your body, rather than having it control you. And although this isn't the type of therapeutic regimen I myself would want to pursue, I think to some degree I comprehend it in a way that's slightly terrifying.

I should also note that, blissfully, Bob Flanagan is dead.

Read his obit in the NY Times.