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.
Another great post. Since I was diagnosed in my early 20s, I never felt the isolation as a child. But now, I can understand it. There still isn’t enough awareness out there. I’m always trying to avoid the kiss hello, try to avoid gatherings with lots of people in case someone has a cold… But only recently began to make friends online and can relate with other CFers – which has been wonderful! I don’t know how I didn’t start doing this sooner.
Keep the posts coming 🙂
Very strange. I think wordpress ate my reply.
Thank you for the kind words. I am going to have to start sending you cash for them. 🙂
I carry Purrell around all the time and avoid handshakes. I do pretty well, but sometimes all it takes is one cold to derail me.