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When a Nursing Assistant Asked Me What the Real 'Red Band Society' Is Like

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Today, while chatting about odds and ends and the ridiculousness that is Hollywood’s recent obsession with sick and/or terminal teens, a nursing assistant asked me a question that left me stumbling over my words. And in my drugged, delirious and exhausted state I just could not find it in my vocabulary to answer.

“What is the real ‘Red Band Society?’”

(For those of you who don’t dabble in the far-too-many poorly created scripts that have managed to make it onto television or the silver screen, you can find an explanation of the show “Red Band Society” here. Just don’t blame me for side effects: incessant eye-rolling, gagging and what-the-heck moments.)

I’ve been thinking about that question all day and decided (though still delirious, so forgive me!) to attempt to craft an answer that adequately explains my feelings on the matter. First thing. Being in the hospital is not all about freedom, fun, friends and pizza parties (which sounds to me a lot more like the description to a sixth-grade birthday celebration). It’s not where “life starts,” as the show’s previews proclaim. It’s not all clichés and sentimental, sensationalized stories of bald kids and bravery. And it’s certainly not all feel-good happy endings to cater to that warm, fuzzy place in your heart so you can rest your head easily on your pillow at night knowing all is good and right in the world.

What is it?

It’s more like crying so hard you puke and puking so hard you cry. It’s where the life you’ve always imagined for yourself stops, reality slaps you in the face, and you have no choice but to confront it face-first — whether you’re ready for it or not. One thing is for certain: You will not be ready for it. It’s those moments of loss and pain and sadness so deep and scary you never knew such depths existed or that they could ever exist within your soul. And no words or inspirational quote slapped on a pretty placard could ever come close to explaining it or fixing it. On good days, maybe your eyes and mind will focus on the kind notes from thoughtful friends and family and maybe even strangers. Their cards will help cover your walls. But on most days those walls will feel strikingly white and bare. Harsh, fluorescent overhead lights will replace sunshine, and the air will be so dry and sterile that no amount of ChapStick will keep your nose and gums from bleeding.

Oh and if you’re lucky? Maybe, just maybe, you’ll eventually get to walk through those exit doors. But your soul will forever hold a gaping wound, and all you can do is hold onto the hope that you’ll have equally as many days of joy, laughter and sunshine in your life to fill that hole back up again.

The real Red Band Society has no exclusions or mercy rule. At any moment it could be your life. So make sure you take some time to breathe and send your gratitude out to the universe for that club you’ve been spared from for yet another day.

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Originally published: April 28, 2015
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