Courage is hard to find some days

I want to be the fearless guy – the one who can do anything and not care what anyone thinks, or look like it. John Belushi comes to mind. Charles Bukowski.  Bob Flanagan. Any stand-up comedian. I may have come close years ago in my bungy-jumping stage. If it was risky, I was willing to try it, or say it. Wrap a rubber band to my feet and let me jump. And I did.

He didn't have a fear bone in his body, but he did have a lot of drugs.

But it’s amazing how I’ve gone to the opposite extreme as I’ve aged. When I was younger, I didn’t care what happened to me. Now I have panic attacks because I’m afraid of dying in my sleep or on a plane. All it takes to set an attack in motion is a tweak in my chest for a fraction of a second. “Game on” in my head. With announcers, too.

And then there is this blog. I want to takes risks, push the envelope, be fearless. But I don’t know if I have the courage to do it, and that makes me disappointed in myself. The fear I’ve developed over the years, combined with OCD, is a roller-coaster of bravery and panic. Up and down, up and down. Like yesterday and today.

I pulled my first published post, the one written in the style of Charles Bukowski. I spent three days on it with my OCD firing like a rocket engine. I even held back in comparison to how far Bukowski pushes his prose. I think I got close to his style and how the world might have looked to him had he had cystic fibrosis. I knew the post pushed boundaries, even for this blog, and added a warning like you might find on property guarded by a crazy farmer with a loaded gun. But I thought the post was true to its subject. Then the “it sounded better in my head” part of fear crept in with: Are you crazy? But I summoned a crumb of courage and clicked “Publish” last night.

Then I panicked. I wrote another post to push the Bukowski post back one notch. Done, in the past. No one will notice it. I felt better. Then I woke up this morning in “spiraling out of control mode” thanks to lower back/kidney pain (another post).

What did I do? Not one comment. Not good. Hmm. Did I go too far? What will people think? I like the people who read my blog. I don’t even know them. But I do. They won’t understand the style and connect it to me. It is connected to me – I wrote it. The post is too far out there. But it’s mellow Bukowski compared to his works. It will be okay. Leave it, you wuss.

So, I removed it. And I’m not sure how I feel now. Disappointed in myself because I pulled it? Perhaps. I take this blog seriously. It’s interesting to put writing out there for others to read and see how it’s interpreted. If there’s a silver lining to this story, it’s that I am pushing boundaries because my posts have made me uncomfortable lately. The question is: do I have the courage to keep pushing?

If there’s there’s a blogging downside, it’s finding your own internal editor to tell you when you pushed too far, what’s gold or crap, and whether to hit “Publish” or “Move to Trash.” I can never tell. Maybe I need to ask: What would Bob Flanagan do?

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Solitary Confinement, the 60s and Bob Flanagan

I read an article about the damage solitary confinement does to prisoners. One might say that’s not a bad thing, a little payback for their horrific crimes. I won’t debate that here. What was interesting and relevant to CF was how much humans need the company of other humans. Without it we literally go mad, as evidenced by solitary confinement research.

That’s the closest I can get to describing growing up with CF in the sixties and seventies. I wasn’t isolated from other people, just other people like myself, which is one of many cruel ironies about this disease. Mask up and stay a certain distance away from each other, symbolizing separation even when together.

Thanks to the Internet a younger generation of CF kids can grow up knowing there are others out there like them. And, more importantly, some of us grow old with CF. I felt like a zoo animal at times growing up, different and apart, which was occasionally reinforced by the neighborhood kids through statements such “you’re going to die” or the rocks they threw. Being skinny didn’t help the situation.  (Sorry, crying like a baby here.)

And then there was Bob Flanagan, CFer, performance artist.

I speak of him for three reasons: to keep his warrior memory alive; I respect him; and because I wonder what his life would have been like had he grown up in the age of the Internet. Did he feel the same isolation?

I was lucky to see Bob perform one night in Venice CA at Beyond Baroque in a room painted all black, which was quite disconcerting in itself. Bob’s dark performance fit perfectly in the suffocating space and created a sense of disorientation.

He and I had a mutual acquaintance in a local college professor, a great writer who I still owe an apology to for monopolizing his office hours with my crying about my life with CF. (Sorry, JK.)  He told me about Bob’s show and I took my future wife to see him. (I’m surprised she married me after that night in Venice.)

I won’t go into detail about Bob’s performance because there is plenty of web content about him, including a documentary. And I offer this warning: Most of Bob’s performances are beyond Adult Content. In fact, some of his material might be the type of thing that you wished you’d never seen.  So, you may want to read about Bob. Proceed with caution before entering his tortured world.

How would the Internet have reshaped his life and mine? People are more knowledgeable about CF and understanding these days than they were when I grew up, and Bob 10 years ahead of me. Most realize we have more to catch from them than they from us.

Even today, with my friends, Twitter friends, and family, I still feel a sense of isolation.  Is it from my youth, or is it that I learned very young not to talk about CF, to hide it from people, and rarely discuss it?

My thoughts on this now: We all have challenges in life. Are mine really that different? I don’t know. Maybe.

I do know this: Solitary confinement won’t be punishment enough for cystic fibrosis and its crimes; Judgment Day is coming.