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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