Sitting in the hospital bed I am incessantly acknowledging being surrounded by these blank, art deficient walls and this view of the city below me with the brick that is growing out of the ground instead of grass or trees. I have to remind myself of how wonderful life is outside of these walls and why I need to be here, now, to be able to continue to enjoy it. Yes, I am hospitalized with a lung exacerbation and pneumonia in New York.

It’s hard to find the words to write in this uninspiring surrounding. In my mind, I am constantly repeating this quote by Jack Kerouac, “One day I will find the words and they will be simple.”

But right now, I really don’t have the words.

I am staring at a sign that says, “Amazing things are happening here.” This is also a good constant reminder of the recent advancements that will soon be available to more CF patients (Check out Brian's last blog and Barbara’s recent post to read about how Vertex has positively impacted their lives with drug innovations).

I don’t really have a lot of words now.

But, I do have this video blog I made from when I was healthy recently. I traveled to Denver to visit my best friend Goldie and celebrate her birthday. We went to yoga and to Red Rocks for a Primus show. We have made Primus a ritual we share. I watch this video and am thankful for my friends around the world I have who share their lives with me. I hope this video gives a glimpse into the everyday routine CF’ers have and I hope it encourages those living with CF (or any illness) to embrace the moments when you are healthy. In those moments I hope you explore and make or build upon your connections to share the love. All we have is love. And that’s what we can share in any moment that will be infinite beyond this lifetime.

I’m sorry not to have more words for you to accompany the video blog. But I am assured that one day I will indeed find them. And they will be effortlessly shared because they will be simple.

 

 

Vicki Thompson is a 29 year old with cystic fibrosis living in upstate New York. She explores the arts on the daily, takes care of maintaining her health in every moment and searches for the moon when it is missing from the sky. Follow her journey on Instagram at vicki_lynn27.