Invisibly Seen: Ruminations on Five Feet Apart

I sat at the center of an empty theater with the essence of my life being reflected from my eyes - a moving image that seemed to have been pulled from the reels of my deepest unconscious being. It was epically surreal and constant feelings of deja vu reverberated through my body. I not only saw themes of my own life drawn out in technicolor before me, I felt them present within the very breath that poured into my body.

In-Visible

Most of all, sitting there I felt the echoes of diverse emotions permeate the weakened and patched fractures of my façade - daring to overwhelm me with a truth in which I internally battle to accept and fully embrace both physically and mentally. While what I saw isn’t an exact depiction of my personal journey with CF, there undoubtedly were many unmistakable moments of familiarity that dredged up a well of emotions. Ones in which I knowingly keep deeply suppressed and safely removed from the rawness of the world. Ones which silently accompany me through this life in which I’ve dedicated to living my truth - a truth founded upon CF that while may be visible to the world, can yet remain truly unseen.

Sitting there drenched in the theater’s darkness and embraced by its comforting anonymity, I felt for once in my life truly seen. While every individual with CF has a different living truth unique unto themselves, there is an unfathomable reality that much of the world has never been able to even begin to imagine. This movie in no way begins to depict every unique and complex story of CF. But, it does authentically capture CF’s unforgiving and unrelenting mental, emotional, and physical realities. It gives us the chance for CF not only to be visible, but for each of us and our unique stories to be truly seen and most of all, shared.

Unspeakable Empathy

I left the theater that day struggling to comprehend what the general public would possibly feel during the course of those two hours and fifteen minutes. They simply couldn’t begin to know or understand what it was like to see your own truth depicted on a screen with such evident care and honesty. Mark and I had the theater completely to ourselves, so I will never know such an audience’s reaction. I couldn’t help but wonder if those who had seen the movie were experiencing the same raw emotion churning within them as I was experiencing. I wondered if they would walk back into the light of the world and see things a bit differently - if they would see CF a bit differently. Did they even know what CF was before this movie? Would they see not just a disease, but a real person? A population of people? Would I be able to see understanding in their eyes? An unspeakable empathy forged in action for fighting for more beautiful breaths? Could I see my own fight for every beautiful breath reflected in their their own eyes and a tenacity within them to fight for more?

Here’s to seeing the beauty in every breath - even those projected onto a screen. Here are some ways in which we can be a positive and life-giving part of this movie’s ripple:

1). If you are an individual with cystic fibrosis, live your truth and share your story! We are listening.

2). If you have not seen the movie, “Five Feet Apart”, I urge you to do so to get a small glimpse into the complexities and demands of CF. Remember, this is a fictional story, but the portrayal of CF and its realities are thoughtfully depicted in the movie. Thank you to Justin Baldoni and the cast of the movie for taking such care in the portrayal of CF and the overall representation of its community through the friendship and love shown through Claire Wineland.

3). TAKE ACTION. If you truly see us, join us in the fight in adding more tomorrows for each of us living with CF. Make a donation to www.cff.org. Your donation could literally be life-giving.

4). Watched the movie? Reach out to someone with CF and start a conversation. Ask questions, get involved, hear our diverse stories. Most of all, become part of our tenacious and strong community.

Love to you all.

*These are my personal opinions and thoughts in regards to the movie, "Five Feet Apart". Opinions and experiences will differ for every unique individual both living with CF and those who are hearing its name for the first time.