Monthly Archives: June 2010

Monday Musings – Tightrope Walking and Cystic Fibrosis

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What would it be like to be a tightrope walker?

Take one of the most famous, Philippe Petit: What’s it like to stand that high in the air, suspended between two buildings, knowing that you are completely alone? Should you lose your balance, no one will be able to help you. You can’t Google a solution or tweet your tweeps. Your cell phone rests out of reach.

Tinkertoy Tightrope Walker by moi & daughter

It’s you and the wire.

And that’s the obvious connection to cystic fibrosis – those moments when it’s you alone on the wire. You’re walking the tightrope with no doctor, no friend, no loved one, no tweet, no phone. It’s you and the disease connected and suspended without a safety net.

It doesn’t matter whether you have CF or you’re the parent of a CF child. At some point, you have a moment when you find yourself out there, above the street, deep in thought about your predicament. What can I do? What do I do?  The decision rests squarely on your shoulders.

But there is a deeper connection of tightrope walking to CF. It’s that moment when you look down and rediscover the true situation you face. You remember that you spend three hours of your day doing treatments and coughing up mucus that makes others jump back in disgust, and you take more drugs in one month than most take in a lifetime. Or, when you arrive at your hospital floor, they welcome you by name.

Some days, it is best not to look down at the street below. You can’t turn back, and looking forward doesn’t help either. The wire is long and platform ahead shrouded in fog. Surprises, wind, and close calls line the way. Your past experiences play back in your head, especially the ones that do not help.

How did I get here? Is this really my life? What do I do?

So, what do you do? Yes, you can take one step forward at a time. We all do that. However, there is another choice.

This is where Petit’s actions on the tightrope over New York City provide a possible course of action – lie down on the wire and look up. That is exactly what he did while suspended above the streets of NYC. He looked up, not down – the opposite of one’s instinct at those heights. And that is the true connection of the tightrope walker to living with CF – sometimes it’s best to live in the moment and not worry about what’s below, behind or in front of us. Block it all out and look up at the sky.

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Saturday Funhouse – Four Things You Didn’t Know About CF

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Win one for Unknown

@seanset requested a Saturday Funhouse post today. So, as it’s Saturday, its seems like his timing is on the mark. Plus, next Saturday’s post will be a recap of Team USA’s thrilling 2-0 World Cup victory over England. Go Red, White and Blue.

Let’s get started.

The Internet provides a great deal of information on cystic fibrosis. You name it, we discuss it. However, some facts get lost in the sticky web of the Internet. So, I cracked open the archives of Cysticpedia today and dug up the following facts about CF that many may have missed. All true, BTW.

75 cents per load

Vest invented by a mom? One Saturday morning, Mrs. Jones of West Palm Beach FL found her young son, little Unknown, sitting atop her old, out-of-balance, vibrating Kenmore washing machine. Cute, she thought, until she noticed the secretions everywhere. She told friends the story at a dinner party that night. One of the dinner guests was the engineer who went on to invent the Vest. Coincidence? To this day, grown Unknown prefers the unbalanced, bouncing washer. True.

We have alien DNA. If you know the story of Superman, then you know he has super powers on Earth. We CFers are aliens on Earth, too, but our powers are neutralized here. However, on our home planet, only people with our unique combination of DNA are super and can fly. And our mucus is a weapon that can eat through steel and take down super villains. Oh, and we live to be 1,000 years old and never get sick. Where’s the ship that takes me home? Hello, Cyslandia? Can you read me? Beam me up, please.

Just like the candy ones I used to smoke. My parents let me smoke candy cigarettes when I was growing up. Now you know what I was up against, don’t you? Which is why I was dumbfounded to discover this controversial new invention scientists are working on. It’s an eFlow-like nebulizer that looks exactly like a cigarette. This way we can do our treatments in the car and look just like smokers on a commute. It also helps us explain our coughing at work. “Maybe you should give up the smoking,” our co-workers will say on their way to lunch, as we stand outside the building smoking our TOBI Lights. “Yeah, kiss my ass. I’ll live to be 95 because of these,” we’ll shoot back, smiling, knowing the truth. At least people will stop thinking they can catch something from us.

Evil spirits begone

Blow this. Some demented MoFo invented the Flutter a few hundred years ago as a device to cure witches and those possessed by evil spirits. When anyone was suspected of being possessed by an demon, they were forced to sit and blow the evil out. It lost its popularity because it was a terrible spectator sport watching someone’s face turn red and puffy until they passed out. Instead, torturers turned to drowning witches and those possessed, as it provided the excitement the crowds desired. And it sold more cotton candy and rats dipped in chocolate. Still, the torture lives on in my house every day. “Out with ya, Green Demon from Hell.”

There you go @seanset. Just for you.

Stay well.

Letter for My Daughter – 06/03/10

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Dearest Daughter of the future,

This post goes down as my most frustrating to date. Argh. I’ve been struggling with it, wrestling it, for weeks. But I feel better when I write “argh,” which I’ve done twice now.

Let’s move on.

I apologize for being a failure. Or, at least for not living up to my full potential.

Everything was there for the taking. All in front of me, a buffet of opportunity, waiting to be placed on my plate next to the mashed potatoes of good fortune. The books, school, a different path, and I took the one most traveled – the easiest one, well worn by others lacking direction. I’m been in recovery mode every since.

Was I really the person who got involved with those people? The ones who lied and made bad choices.? I was. Yes. That was I.

I ventured out on my own at 18, CF warping my mind, and no guidance to help me mash down my own path in the grass. It’s no excuse. My intention isn’t to be cryptic. It’s hard to relive my mistakes. I don’t recognize myself in my past actions. How could I have shown such poor judgement and done so many stupid things? Argh.

I told you that’s it okay to make mistakes – that’s how we learn. The key is not to make the same mistake twice. I have an asterisk next to that advice now.

Call the dogs, they'll clean it up.

There are mistakes you can’t make in life. They are mistakes of great importance with irreversible consequences. When you’re 16, 17, 18, your brain will feel as mature as you think it will ever get. Wrong. Remember that. You’re wrong. That’s not going to happen until you’re around 25, or in my case, never.

What’s really ironic is how I was fearful of making mistakes that could have had a huge upside or reward in life and fearless when it came to actions with huge downsides. So, when your friends ask you to go smoke something behind the gym, know that it is a mistake you’ll have to live with forever. For f’ing ever and a day. Avoid it.

My message today: take risks, make mistakes, but keep an eye on the up and downsides. There is potential embarrassment, and there is what keeps you from achieving everything you’ll want later in life. I chose the latter when I should have chosen the former. Embarrassment may make you feel like dying at the moment, but it is fleeting and makes for funny blog posts for your kids. The other stuff will haunt you for life.

Choose your friends like you once chose your Pokemon – pick the good ones. And don’t follow bad ones into dark places. You’ll spend your life clawing your way out. And worst of all, you’ll never forget your time there.

With love. Take care of your mother. No one loves you more.

The Post I Could Not Write Today

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The daughter of my friend @seanset joined Twitter today. This situation, in my warped mind, opened the door for all kinds of fun and pranks at his expense. Oh, what I had planned. The title of tonight’s blog was going to be “Five Tweets @Seanset never wants to see from his daughter.”

I can say that they were quite silly and would have sent @seanset reaching for a pint or two. But something funny happened on the way to that post. It hit me that here was his daughter, 19 years old, enjoying Twitter with her father. I wasn’t speaking to my father when I was that age, and haven’t since. And I thought of all of his tweets about his three daughters, the love he’s displayed for them, and the photos he’s shared. The miles he and his wife have logged taking care of them.

And I couldn’t do it. I have too much respect for this man who lives an ocean away.

One day, I’m going to walk into a pub in England, place a few pounds on the bar and buy him and my other English friend @onlyz the drinks of their choosing. I might even watch some cricket with them. Okay, maybe the cricket part is a stretch. I’ll watch soccer. You don’t need a 500-page rule book to understand it.

I also know that his daughter’s real tweets will get him in the long run anyway. That’s what daughters do. I just have to be patient and pick my moments.

I will share one fake tweet from his daughter. It’s the one that would shock him the most.

Dad, eloped with @unknowncystic. Made huge mistake. Send plane ticket. Bag on his head for a reason. Fugly. Talks to invisible fox. #ohshite

Stay well.

60-second Tuesday Rant – My Bucket, Medical Bills and Stratego

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My allergy doctor told me I have a bucket that holds all of my medical challenges. With CF, he said, my bucket is close to full every day. And, it doesn’t take much or even something physical to cause it to overflow.

Medical bills make my bucket blow like a Vegas water show.

I feel embarrassed that I drain the system to the tune of four hospitalizations a year and a potpourri of inhaled and oral meds. It hurts to look at the bills. A panic attack can start just by pulling an inch-thick stack of them from the mailbox. They are reminders of my greatest fear of not having insurance and knowing what I might have to do at that point.

Luckily, I married above my pay grade and my wife deals with them.

But that upsets me, too – the time she spends navigating the maze, making sure we don’t overpay, pay twice, or just plain get screwed. It’s shocking how incorrect the bills are. She has an MBA and an honorary degree in detective work, yet it still takes numerous phone calls to tie the numbers together and figure out what we owe. It also doesn’t help that some bills arrive a year after the service.

What do people without her expertise do? I bet they pay what they don’t owe.

Sometimes, collection agencies harass us for payment while the insurance company and service provider debate who who is at fault for non-payment, each telling my wife to call the other party to resolve the situation. Her phone conversations sound like a lawyer’s, documenting the name of the person, time of the call, and what was said.

Available at Amazon.com

It’s amazing in this age of technology that these problems still exist. It’s not the government who needs to run our healthcare system, it’s Google. Now that’s a company with the communication intelligence to fix the billing errors that take place between the patient, insurance company and medical provider.

I’m not complaining. I’m lucky to have insurance. I just wish it didn’t have to be a game of Stratego every time we open a stack of bills. That’s the part of CF I didn’t anticipate when I was younger – the stress and battle of medical insurance. It’s Stratego come to life with healthcare on one side and my wife and I on the other. Luckily, my wife plays a hell of a game. But it’s a shame it’s not a more friendly game like Candy Land, which doesn’t require a Xanax to play.