Through the Looking Plexiglass

No father/daughter dance for me last night. I do have a virus, perhaps a flu, and combined with the bleeding I didn’t have the energy to go. And thus there was no punching other dads in the nose (sorry, Liz).

When I told my daughter I might have to go back to the hospital, she started crying and didn’t mind not going to the dance. We stayed home and played Kirby on the Wii.

Between her sobs, my daughter said it was hard to explain to her friends about having a dad who goes to the hospital. I had to give her the low down about some kids not having dads at all or having dads who were alcoholics or dads who had other medical challenges. There is no norm. Your life is your life and your challenges are your challenges. I’m sympathetic, but firm that she needs to step up and be brave like the female heroes she’s grown up reading about and watching. At 9, it’s not easy to do.

The blood is almost gone; streaks remain. So, I restarted the hypertonic saline this morning. I feel better and am no longer a Tylenol junkie.

Just a moment

For today’s party we went ice skating, which was strange because the ice rink was freezing cold, but it was almost 80 degrees outside. Like walking into an icebox in the desert – and out again – and in – and out.

I didn’t skate. I’m terrible at it and the exertion would have left a lot of bright red blotches of blood on the ice with kids screaming and skating away – think 50s horror movie “fleeing from the creature.”

Instead, I watched from the other side of the plexiglass, which feels like it explains what CF can be like sometimes – a barrier between me and real life. Sometimes it’s the actual glass of ICU or the hospital door or walls. Or the ice rink plexiglass as I watch my family and think that’s where I’d really like to be.

But there’s something in my way.

It’s all good. No complaints. The view through scratched plexiglass is better than the alternative. I’m sure of that.

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“Me Time” Is Overrated

My sense of isolation has increased over the years as this disease has worsened. During the past three months and the hemoptysis surprise parties I’ve had, I’ve felt more isolated. I have friends, but it’s hard to plan getting together. At times, when my lungs have gone south, it’s an effort to speak. Or, there are the times I just don’t feel well, which have increased. It’s harder to make an effort to hang out, and easier to stay home.

Life is like a postcard here in L.A.

Then add Los Angeles to the equation. It may seem strange to say that this expansive city of millions can feel isolating, but it can and does. Everything is spread out here, including my friends. And what may be a short drive in distance can take forever thanks to the worst traffic in the country. Visits across town take planning. You can’t just drop in on someone. Add to that the fact everyone is busier these days making ends meet and managing life. Even my healthy friends are tired.

The daily management of CF and time spent doing treatments each day interferes with going out or having friends over. I laugh when I fill out CF “quality of life” surveys. I have a great life, but the question asking if CF gets in the way of my doing stuff makes me want to ram my head against a wall. I need an answer choice of “F**k yes, it gets in my way. Are you kidding?” Clearly, someone with CF didn’t write that question because they’d already know the answer is yes.  Okay, maybe not for all CFers. I don’t want to make that assumption. I hope it doesn’t for everyone. Just place a permanent check mark in my survey, please.

So, it’s Christmastime and I’m lucky. But I would have loved to have had a holiday party this season, which I say we’re going to do each year, but we didn’t yet again. Life with CF got in the way. The blood came after Thanksgiving and it was “all hands on deck” mode to maintain life as we know it. Now I’m on blood watch, as the streaks have returned and it’s anyone’s guess when my lung pops again. Can you say “fourth embolization coming up?”

Life is good. Yet, CF can make it feel like normal life is going on while I sit at the computer with a nebulizer in my mouth. That’s the “me time” I’d happily exchange for “hanging out with friends” time.

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.